Question:
Hello all, I lurked around for a little and done quite a bit of searching, but I’ve not come across any description that comes the closest to matching my symptoms. I’m really tired of the drug roller coaster and don’t really want to try anything unless I find someone with similar problems that had success with a particular med or combo of meds. I’ve tried many. From the ones I’ve tried, the cure is worse than the disease. So if anyone has similar symptoms, I would appreciate hearing from you. TYPE OF MIGRAINE: Cyclical I have cyclical migraines. There’s no set pattern. A little while without them, and then a little while with them every day. Mine are usually on the right, but occasionally I get the left side migraine. DESCRIPTION OF MIGRAINE: Gradual They start slowly. I rarely get the spots, blurry vision, or visual auras that signify a very bad migraine. Most of mine are low to mid-grade migraines, but when they start they are there *all* the time. Sometimes I will first feel pain and swelling in the back of my neck, and then it crawls up the right side of my head until it hits the temple – migraine. Most of my migraines are there in the morning when I wake. I wake up with my right eye sore and swollen and pain in my right temple. With an ice pack on these mornings I can chase the migraine away for a while. If I’m lucky it won’t come back until the next day. However it usually returns in the afternoon and slowly builds in a crescendo. Depending on the severity I either can nap it off, ice pack it away, or take meds. Other times I wake up in the morning and just know it’s coming by the not-normal feeling I have. My wife didn’t believe me for a long time about this. I think she does finally. I really can’t explain the feeling. I just don’t feel right. MIGRAINE MEDS: Imitrex For me this was the magic pill. I don’t know what I did before it. The only problem is the rationing I must do since I only get 9 a month. So I stock up in the good times to have plenty in the lean times. I live in constant fear of running out. However this one pill cures all that ails me. It always cures the migraine as well as any muscle soreness I may have that preceded it. However it does cause my to pee a lot. I don’t quite understand why, but every 15 mns for an hour or two is par for the course. I don’t know if that’s important or not, but you never know. CONTRIBUTING PROBLEMS: Sleep I’ve never slept well, at least as an adult. I have constant daily fatigue or get sleep attacks. I’ve had all the sleep tests. I really don’t have sleep apnea. I don’t have narcolepsy. But I go through phases where if I don’t nap in the afternoon or evening I’m going to get a headache. My body completely shuts down and forces me to nap. I wake up feeling fine and fully refreshed. If I don’t nap, I will feel incredibly brain tired and headachy until I sleep for the night. Other times I feel like my body cycle just completely resets. I go for a few weeks ready for bed at 11pm or so and feel generally ok the next day. Then all the sudden I feel the exact same way at 5 in the afternoon. It’s like jet lag, but I haven’t gone anywhere. It’s a good bed migraines won’t be far behind. As with the headaches, this tends to cycle. Sometimes I don’t need much sleep and do fine. Sometimes I can’t get enough. I’ve tried a c-pap machine for the slight sleep apnea I had. The left me headachy every morning, so it really didn’t help. People with real sleep apnea feel immediate relief. I didn’t. As for sleep meds, I take elavil sometimes when my sleep cycle adjusts or I develop insomnia where I wake up in the early morning and can’t return to sleep. I also take melatonin, and it helps a little. It’s by no means a cure. EMOTIONAL FACTORS: Low grade bipolar II. I have mood swings. However they aren’t tremendous, and I’ve long since learned to control the mood swings through self discipline. I constantly examine myself from the outside in or as an objective bystander and ask myself if what I’m feeling makes sense. If it doesn’t, I act accordingly. This has solved the problems I used to have with impulsive actions. It has been diagnosed by a doctor. This isn’t just speculation on my part. Many people hear this described and think to themselves, "Everyone goes through mood swings." These people don’t understand. If you have it, you know you’re not normal, but you don’t know why. At least now I know why. As for my symptoms, my manic stage is brief but not overly traumatic. It can last a few days and in rare cases a few weeks. During these times I feel like I can take on the world and have changed jobs, gone back to school, taken on large projects, etc. I have always been known as someone who doesn’t finish what they started. This is because shortly after I start my mood changes, and I come back down to earth. Maybe someone sees this in themselves. My depressed state is not that bad. During these times I am unduly depressed but never to a tremendous and have never been suicidal. I also have a little ocd and medium anxiety attacks can hit me at any time. However, overall the bipolar aspect is not that bad. Apparently many people with migraines also have bp II. Unfortunately there hasn’t been a whole lot of research into dual cures, so maybe someone here recognizes themselves in me and has stumbled across something that works. Obviously this affects personal relationships. I could always hide this before I got married, but when you live with someone it’s impossible. Our sex life has never been normal because of my migraines and mood swings. Many times the over-excitement during sex brings on a migraine. As a result, I think something somewhere turns off the desire in order to avoid the migraine. It’s just never been normal. For anyone who experiences this, you know how difficult it can be. Your partner blames themselves, and no amount of explaining the mysteries of the brain will help. Unless you’re missing arms or legs or something obvious, sometimes people just don’t understand. "It’s all in your head!" How many times have I heard that. As if I could just make it stop at will. If only. OTHER FACTORS: Misc These are things that happen from time to time which aren’t normal but might be important to someone. Tremors: I get tremors semi-regularly. Never ones that shake my whole body, but I feel it internally. I’m a little weak around this time. I have been diagnosed with hypoglycemia also, but I check my blood sugar levels during my tremors and have ruled blood sugar out as a factor. My levels are fine. But the tremors leave me shaky all day and weak during athletic activities. A lot of times I just notice it in my face, where my mouth is shaky and won’t stay still. I can’t look at people without constantly adjusting to hide it, or I chew gum. Frequent urination: Sometimes I go through phases where I just pee all the time. Usually I’m also having some sort of a sleep attack at the same time, but not always. This could be totally unrelated, but seems to fall in a pattern of when I’m having other problems as well. Vision problems: My focus comes and goes. That’s probably because of the eye swelling, but it’s noticeable. Sometimes I can see things without my glasses, and sometimes I can’t. So, that’s about it. The problem with having migraine and other brain problems is that there are so many things that can go wrong in the brain, so many chemicals and so many different types of meds, that one can spend years trying to find meds that work. The doctors I’ve seen aren’t basing my treatment on any case studies to try and narrow the possibilities but simply on the latest/greatest drug or whichever they happen to have the most samples of. I can’t do that anymore. The cure may be out there for me, but I don’t want to lose any more weeks of my life trying to find it. I hope that by finding someone with symptoms as close to mine as possible I can increase my chances of finding something that works. Thanks for taking the time, Marc
Response:
Dear Marc: It sounds like you have your hands full. I have two questions for you. Why are you limited to 9 Imitrex per month — is that what your doctor recommended or a cost issue? It’s a shame, because I have many pills lying around that I’ll never use (they didn’t work for me, but I didn’t realize until I filled the prescription). And, secondly, have you tried acupuncture? That’s one way to target all the specific problems you’re having. Good luck! Rebecca – Hide quoted text — Show quoted text – Hello all, I lurked around for a little and done quite a bit of searching, but I’ve not come across any description that comes the closest to matching my symptoms. I’m really tired of the drug roller coaster and don’t really want to try anything unless I find someone with similar problems that had success with a particular med or combo of meds. I’ve tried many. From the ones I’ve tried, the cure is worse than the disease. So if anyone has similar symptoms, I would appreciate hearing from you. TYPE OF MIGRAINE: Cyclical I have cyclical migraines. There’s no set pattern. A little while without them, and then a little while with them every day. Mine are usually on the right, but occasionally I get the left side migraine. DESCRIPTION OF MIGRAINE: Gradual They start slowly. I rarely get the spots, blurry vision, or visual auras that signify a very bad migraine. Most of mine are low to mid-grade migraines, but when they start they are there *all* the time. Sometimes I will first feel pain and swelling in the back of my neck, and then it crawls up the right side of my head until it hits the temple – migraine. Most of my migraines are there in the morning when I wake. I wake up with my right eye sore and swollen and pain in my right temple. With an ice pack on these mornings I can chase the migraine away for a while. If I’m lucky it won’t come back until the next day. However it usually returns in the afternoon and slowly builds in a crescendo. Depending on the severity I either can nap it off, ice pack it away, or take meds. Other times I wake up in the morning and just know it’s coming by the not-normal feeling I have. My wife didn’t believe me for a long time about this. I think she does finally. I really can’t explain the feeling. I just don’t feel right. MIGRAINE MEDS: Imitrex For me this was the magic pill. I don’t know what I did before it. The only problem is the rationing I must do since I only get 9 a month. So I stock up in the good times to have plenty in the lean times. I live in constant fear of running out. However this one pill cures all that ails me. It always cures the migraine as well as any muscle soreness I may have that preceded it. However it does cause my to pee a lot. I don’t quite understand why, but every 15 mns for an hour or two is par for the course. I don’t know if that’s important or not, but you never know. CONTRIBUTING PROBLEMS: Sleep I’ve never slept well, at least as an adult. I have constant daily fatigue or get sleep attacks. I’ve had all the sleep tests. I really don’t have sleep apnea. I don’t have narcolepsy. But I go through phases where if I don’t nap in the afternoon or evening I’m going to get a headache. My body completely shuts down and forces me to nap. I wake up feeling fine and fully refreshed. If I don’t nap, I will feel incredibly brain tired and headachy until I sleep for the night. Other times I feel like my body cycle just completely resets. I go for a few weeks ready for bed at 11pm or so and feel generally ok the next day. Then all the sudden I feel the exact same way at 5 in the afternoon. It’s like jet lag, but I haven’t gone anywhere. It’s a good bed migraines won’t be far behind. As with the headaches, this tends to cycle. Sometimes I don’t need much sleep and do fine. Sometimes I can’t get enough. I’ve tried a c-pap machine for the slight sleep apnea I had. The left me headachy every morning, so it really didn’t help. People with real sleep apnea feel immediate relief. I didn’t. As for sleep meds, I take elavil sometimes when my sleep cycle adjusts or I develop insomnia where I wake up in the early morning and can’t return to sleep. I also take melatonin, and it helps a little. It’s by no means a cure. EMOTIONAL FACTORS: Low grade bipolar II. I have mood swings. However they aren’t tremendous, and I’ve long since learned to control the mood swings through self discipline. I constantly examine myself from the outside in or as an objective bystander and ask myself if what I’m feeling makes sense. If it doesn’t, I act accordingly. This has solved the problems I used to have with impulsive actions. It has been diagnosed by a doctor. This isn’t just speculation on my part. Many people hear this described and think to themselves, "Everyone goes through mood swings." These people don’t understand. If you have it, you know you’re not normal, but you don’t know why. At least now I know why. As for my symptoms, my manic stage is brief but not overly traumatic. It can last a few days and in rare cases a few weeks. During these times I feel like I can take on the world and have changed jobs, gone back to school, taken on large projects, etc. I have always been known as someone who doesn’t finish what they started. This is because shortly after I start my mood changes, and I come back down to earth. Maybe someone sees this in themselves. My depressed state is not that bad. During these times I am unduly depressed but never to a tremendous and have never been suicidal. I also have a little ocd and medium anxiety attacks can hit me at any time. However, overall the bipolar aspect is not that bad. Apparently many people with migraines also have bp II. Unfortunately there hasn’t been a whole lot of research into dual cures, so maybe someone here recognizes themselves in me and has stumbled across something that works. Obviously this affects personal relationships. I could always hide this before I got married, but when you live with someone it’s impossible. Our sex life has never been normal because of my migraines and mood swings. Many times the over-excitement during sex brings on a migraine. As a result, I think something somewhere turns off the desire in order to avoid the migraine. It’s just never been normal. For anyone who experiences this, you know how difficult it can be. Your partner blames themselves, and no amount of explaining the mysteries of the brain will help. Unless you’re missing arms or legs or something obvious, sometimes people just don’t understand. "It’s all in your head!" How many times have I heard that. As if I could just make it stop at will. If only. OTHER FACTORS: Misc These are things that happen from time to time which aren’t normal but might be important to someone. Tremors: I get tremors semi-regularly. Never ones that shake my whole body, but I feel it internally. I’m a little weak around this time. I have been diagnosed with hypoglycemia also, but I check my blood sugar levels during my tremors and have ruled blood sugar out as a factor. My levels are fine. But the tremors leave me shaky all day and weak during athletic activities. A lot of times I just notice it in my face, where my mouth is shaky and won’t stay still. I can’t look at people without constantly adjusting to hide it, or I chew gum. Frequent urination: Sometimes I go through phases where I just pee all the time. Usually I’m also having some sort of a sleep attack at the same time, but not always. This could be totally unrelated, but seems to fall in a pattern of when I’m having other problems as well. Vision problems: My focus comes and goes. That’s probably because of the eye swelling, but it’s noticeable. Sometimes I can see things without my glasses, and sometimes I can’t. So, that’s about it. The problem with having migraine and other brain problems is that there are so many things that can go wrong in the brain, so many chemicals and so many different types of meds, that one can spend years trying to find meds that work. The doctors I’ve seen aren’t basing my treatment on any case studies to try and narrow the possibilities but simply on the latest/greatest drug or whichever they happen to have the most samples of. I can’t do that anymore. The cure may be out there for me, but I don’t want to lose any more weeks of my life trying to find it. I hope that by finding someone with symptoms as close to mine as possible I can increase my chances of finding something that works. Thanks for taking the time, Marc
Response:
Welcome Marc, glad you came out of the lurk mode. You will probably find any number of people at ASHM who have some symptoms similar to yours, but whether you have a twin out there somewhere, well who knows? 
Something you might consider though, it’s almost written in stone that what works for one individual may not work for another…e.g. your *twin’s* regimen may not work at all for you, but it wouldn’t hurt to try. Stick around, you’ll see *yourself* in other posts. I wish you luck and once again, welcome. ~Sage
– Hide quoted text — Show quoted text – Hello all, I lurked around for a little and done quite a bit of searching, but I’ve not come across any description that comes the closest to matching my symptoms. I’m really tired of the drug roller coaster and don’t really want to try anything unless I find someone with similar problems that had success with a particular med or combo of meds. I’ve tried many. From the ones I’ve tried, the cure is worse than the disease. So if anyone has similar symptoms, I would appreciate hearing from you. TYPE OF MIGRAINE: Cyclical I have cyclical migraines. There’s no set pattern. A little while without them, and then a little while with them every day. Mine are usually on the right, but occasionally I get the left side migraine. DESCRIPTION OF MIGRAINE: Gradual They start slowly. I rarely get the spots, blurry vision, or visual auras that signify a very bad migraine. Most of mine are low to mid-grade migraines, but when they start they are there *all* the time. Sometimes I will first feel pain and swelling in the back of my neck, and then it crawls up the right side of my head until it hits the temple – migraine. Most of my migraines are there in the morning when I wake. I wake up with my right eye sore and swollen and pain in my right temple. With an ice pack on these mornings I can chase the migraine away for a while. If I’m lucky it won’t come back until the next day. However it usually returns in the afternoon and slowly builds in a crescendo. Depending on the severity I either can nap it off, ice pack it away, or take meds. Other times I wake up in the morning and just know it’s coming by the not-normal feeling I have. My wife didn’t believe me for a long time about this. I think she does finally. I really can’t explain the feeling. I just don’t feel right. MIGRAINE MEDS: Imitrex For me this was the magic pill. I don’t know what I did before it. The only problem is the rationing I must do since I only get 9 a month. So I stock up in the good times to have plenty in the lean times. I live in constant fear of running out. However this one pill cures all that ails me. It always cures the migraine as well as any muscle soreness I may have that preceded it. However it does cause my to pee a lot. I don’t quite understand why, but every 15 mns for an hour or two is par for the course. I don’t know if that’s important or not, but you never know. CONTRIBUTING PROBLEMS: Sleep I’ve never slept well, at least as an adult. I have constant daily fatigue or get sleep attacks. I’ve had all the sleep tests. I really don’t have sleep apnea. I don’t have narcolepsy. But I go through phases where if I don’t nap in the afternoon or evening I’m going to get a headache. My body completely shuts down and forces me to nap. I wake up feeling fine and fully refreshed. If I don’t nap, I will feel incredibly brain tired and headachy until I sleep for the night. Other times I feel like my body cycle just completely resets. I go for a few weeks ready for bed at 11pm or so and feel generally ok the next day. Then all the sudden I feel the exact same way at 5 in the afternoon. It’s like jet lag, but I haven’t gone anywhere. It’s a good bed migraines won’t be far behind. As with the headaches, this tends to cycle. Sometimes I don’t need much sleep and do fine. Sometimes I can’t get enough. I’ve tried a c-pap machine for the slight sleep apnea I had. The left me headachy every morning, so it really didn’t help. People with real sleep apnea feel immediate relief. I didn’t. As for sleep meds, I take elavil sometimes when my sleep cycle adjusts or I develop insomnia where I wake up in the early morning and can’t return to sleep. I also take melatonin, and it helps a little. It’s by no means a cure. EMOTIONAL FACTORS: Low grade bipolar II. I have mood swings. However they aren’t tremendous, and I’ve long since learned to control the mood swings through self discipline. I constantly examine myself from the outside in or as an objective bystander and ask myself if what I’m feeling makes sense. If it doesn’t, I act accordingly. This has solved the problems I used to have with impulsive actions. It has been diagnosed by a doctor. This isn’t just speculation on my part. Many people hear this described and think to themselves, "Everyone goes through mood swings." These people don’t understand. If you have it, you know you’re not normal, but you don’t know why. At least now I know why. As for my symptoms, my manic stage is brief but not overly traumatic. It can last a few days and in rare cases a few weeks. During these times I feel like I can take on the world and have changed jobs, gone back to school, taken on large projects, etc. I have always been known as someone who doesn’t finish what they started. This is because shortly after I start my mood changes, and I come back down to earth. Maybe someone sees this in themselves. My depressed state is not that bad. During these times I am unduly depressed but never to a tremendous and have never been suicidal. I also have a little ocd and medium anxiety attacks can hit me at any time. However, overall the bipolar aspect is not that bad. Apparently many people with migraines also have bp II. Unfortunately there hasn’t been a whole lot of research into dual cures, so maybe someone here recognizes themselves in me and has stumbled across something that works. Obviously this affects personal relationships. I could always hide this before I got married, but when you live with someone it’s impossible. Our sex life has never been normal because of my migraines and mood swings. Many times the over-excitement during sex brings on a migraine. As a result, I think something somewhere turns off the desire in order to avoid the migraine. It’s just never been normal. For anyone who experiences this, you know how difficult it can be. Your partner blames themselves, and no amount of explaining the mysteries of the brain will help. Unless you’re missing arms or legs or something obvious, sometimes people just don’t understand. "It’s all in your head!" How many times have I heard that. As if I could just make it stop at will. If only. OTHER FACTORS: Misc These are things that happen from time to time which aren’t normal but might be important to someone. Tremors: I get tremors semi-regularly. Never ones that shake my whole body, but I feel it internally. I’m a little weak around this time. I have been diagnosed with hypoglycemia also, but I check my blood sugar levels during my tremors and have ruled blood sugar out as a factor. My levels are fine. But the tremors leave me shaky all day and weak during athletic activities. A lot of times I just notice it in my face, where my mouth is shaky and won’t stay still. I can’t look at people without constantly adjusting to hide it, or I chew gum. Frequent urination: Sometimes I go through phases where I just pee all the time. Usually I’m also having some sort of a sleep attack at the same time, but not always. This could be totally unrelated, but seems to fall in a pattern of when I’m having other problems as well. Vision problems: My focus comes and goes. That’s probably because of the eye swelling, but it’s noticeable. Sometimes I can see things without my glasses, and sometimes I can’t. So, that’s about it. The problem with having migraine and other brain problems is that there are so many things that can go wrong in the brain, so many chemicals and so many different types of meds, that one can spend years trying to find meds that work. The doctors I’ve seen aren’t basing my treatment on any case studies to try and narrow the possibilities but simply on the latest/greatest drug or whichever they happen to have the most samples of. I can’t do that anymore. The cure may be out there for me, but I don’t want to lose any more weeks of my life trying to find it. I hope that by finding someone with symptoms as close to mine as possible I can increase my chances of finding something that works. Thanks for taking the time, Marc
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Response:
– Hide quoted text — Show quoted text – Hello all, I lurked around for a little and done quite a bit of searching, but I’ve not come across any description that comes the closest to matching my symptoms. I’m really tired of the drug roller coaster and don’t really want to try anything unless I find someone with similar problems that had success with a particular med or combo of meds. I’ve tried many. From the ones I’ve tried, the cure is worse than the disease. So if anyone has similar symptoms, I would appreciate hearing from you. TYPE OF MIGRAINE: Cyclical I have cyclical migraines. There’s no set pattern. A little while without them, and then a little while with them every day. Mine are usually on the right, but occasionally I get the left side migraine. DESCRIPTION OF MIGRAINE: Gradual They start slowly. I rarely get the spots, blurry vision, or visual auras that signify a very bad migraine. Most of mine are low to mid-grade migraines, but when they start they are there *all* the time. Sometimes I will first feel pain and swelling in the back of my neck, and then it crawls up the right side of my head until it hits the temple – migraine. Most of my migraines are there in the morning when I wake. I wake up with my right eye sore and swollen and pain in my right temple. With an ice pack on these mornings I can chase the migraine away for a while. If I’m lucky it won’t come back until the next day. However it usually returns in the afternoon and slowly builds in a crescendo. Depending on the severity I either can nap it off, ice pack it away, or take meds. Other times I wake up in the morning and just know it’s coming by the not-normal feeling I have. My wife didn’t believe me for a long time about this. I think she does finally. I really can’t explain the feeling. I just don’t feel right. MIGRAINE MEDS: Imitrex For me this was the magic pill. I don’t know what I did before it. The only problem is the rationing I must do since I only get 9 a month. So I stock up in the good times to have plenty in the lean times. I live in constant fear of running out. However this one pill cures all that ails me. It always cures the migraine as well as any muscle soreness I may have that preceded it. However it does cause my to pee a lot. I don’t quite understand why, but every 15 mns for an hour or two is par for the course. I don’t know if that’s important or not, but you never know. CONTRIBUTING PROBLEMS: Sleep I’ve never slept well, at least as an adult. I have constant daily fatigue or get sleep attacks. I’ve had all the sleep tests. I really don’t have sleep apnea. I don’t have narcolepsy. But I go through phases where if I don’t nap in the afternoon or evening I’m going to get a headache. My body completely shuts down and forces me to nap. I wake up feeling fine and fully refreshed. If I don’t nap, I will feel incredibly brain tired and headachy until I sleep for the night. Other times I feel like my body cycle just completely resets. I go for a few weeks ready for bed at 11pm or so and feel generally ok the next day. Then all the sudden I feel the exact same way at 5 in the afternoon. It’s like jet lag, but I haven’t gone anywhere. It’s a good bed migraines won’t be far behind. As with the headaches, this tends to cycle. Sometimes I don’t need much sleep and do fine. Sometimes I can’t get enough. I’ve tried a c-pap machine for the slight sleep apnea I had. The left me headachy every morning, so it really didn’t help. People with real sleep apnea feel immediate relief. I didn’t. As for sleep meds, I take elavil sometimes when my sleep cycle adjusts or I develop insomnia where I wake up in the early morning and can’t return to sleep. I also take melatonin, and it helps a little. It’s by no means a cure. EMOTIONAL FACTORS: Low grade bipolar II. I have mood swings. However they aren’t tremendous, and I’ve long since learned to control the mood swings through self discipline. I constantly examine myself from the outside in or as an objective bystander and ask myself if what I’m feeling makes sense. If it doesn’t, I act accordingly. This has solved the problems I used to have with impulsive actions. It has been diagnosed by a doctor. This isn’t just speculation on my part. Many people hear this described and think to themselves, "Everyone goes through mood swings." These people don’t understand. If you have it, you know you’re not normal, but you don’t know why. At least now I know why. As for my symptoms, my manic stage is brief but not overly traumatic. It can last a few days and in rare cases a few weeks. During these times I feel like I can take on the world and have changed jobs, gone back to school, taken on large projects, etc. I have always been known as someone who doesn’t finish what they started. This is because shortly after I start my mood changes, and I come back down to earth. Maybe someone sees this in themselves. My depressed state is not that bad. During these times I am unduly depressed but never to a tremendous and have never been suicidal. I also have a little ocd and medium anxiety attacks can hit me at any time. However, overall the bipolar aspect is not that bad. Apparently many people with migraines also have bp II. Unfortunately there hasn’t been a whole lot of research into dual cures, so maybe someone here recognizes themselves in me and has stumbled across something that works. Obviously this affects personal relationships. I could always hide this before I got married, but when you live with someone it’s impossible. Our sex life has never been normal because of my migraines and mood swings. Many times the over-excitement during sex brings on a migraine. As a result, I think something somewhere turns off the desire in order to avoid the migraine. It’s just never been normal. For anyone who experiences this, you know how difficult it can be. Your partner blames themselves, and no amount of explaining the mysteries of the brain will help. Unless you’re missing arms or legs or something obvious, sometimes people just don’t understand. "It’s all in your head!" How many times have I heard that. As if I could just make it stop at will. If only. OTHER FACTORS: Misc These are things that happen from time to time which aren’t normal but might be important to someone. Tremors: I get tremors semi-regularly. Never ones that shake my whole body, but I feel it internally. I’m a little weak around this time. I have been diagnosed with hypoglycemia also, but I check my blood sugar levels during my tremors and have ruled blood sugar out as a factor. My levels are fine. But the tremors leave me shaky all day and weak during athletic activities. A lot of times I just notice it in my face, where my mouth is shaky and won’t stay still. I can’t look at people without constantly adjusting to hide it, or I chew gum. Frequent urination: Sometimes I go through phases where I just pee all the time. Usually I’m also having some sort of a sleep attack at the same time, but not always. This could be totally unrelated, but seems to fall in a pattern of when I’m having other problems as well. Vision problems: My focus comes and goes. That’s probably because of the eye swelling, but it’s noticeable. Sometimes I can see things without my glasses, and sometimes I can’t. So, that’s about it. The problem with having migraine and other brain problems is that there are so many things that can go wrong in the brain, so many chemicals and so many different types of meds, that one can spend years trying to find meds that work. The doctors I’ve seen aren’t basing my treatment on any case studies to try and narrow the possibilities but simply on the latest/greatest drug or whichever they happen to have the most samples of. I can’t do that anymore. The cure may be out there for me, but I don’t want to lose any more weeks of my life trying to find it. I hope that by finding someone with symptoms as close to mine as possible I can increase my chances of finding something that works. Thanks for taking the time, Marc
There is not enough information to feel very certain, but I wonder if you have cluster headaches rather than migraine. If you have not already done so, you might want to go to http://www.i-h-s.org, the International Headache Society’s site, go to guidelines, then criteria, and read through various types there to see what seems to fit best. Ultimately, and perhaps going directly without bothering with the reading suggested above, you would want to see a headache specialist.
Response:
Thanks Sage, Yeah, I unfortunately understand that even if I find someone who has all my symptoms their cure might not work for me. From the tons of materials I’ve read about the different medications and the people who tried them, I know what a crap shoot it can be. I guess that’s why I’m trying to narrow it down at least a little by going with something that at least worked for someone like me somewhere. I took some graduate classes in neurology trying to get a little insight into the problem. The classes were fascinating. The brain is quite an incredible organ, and it doesn’t take much to throw it off kilter. When you learn how it works it makes you wonder how it ever works correctly at all. A chemical in one part of the brain is a stimulant, then in another part the same chemical is a depressant. You fix one thing then you screw up another. It’s like a snake eating it’s tail. A person takes a drug for one thing, then all the sudden they’re taking two drugs to try and counteract the other three. So as interesting as the classes were, it was also a little depressing with the knowledge that most doctors prescribe these drugs without knowing why they work but that they just keep trying things until something does. All in all, there’s no analytical way to figure out which drug is right for which problem in which person. On top of that, it can be a little frightening take new medication. No one knows what the long term effects might be. We’re all sort of guinea pigs just trying stuff to see what will happen. So for an engineer like me the non-analytical approach to solving this problem kind of drives me crazy. I guess I’m hoping I can at least find a better jumping off point. Twin! Where are you?? Marc
– Hide quoted text — Show quoted text – Welcome Marc, glad you came out of the lurk mode. You will probably find any number of people at ASHM who have some symptoms similar to yours, but whether you have a twin out there somewhere, well who knows? Something you might consider though, it’s almost written in stone that what works for one individual may not work for another…e.g. your *twin’s* regimen may not work at all for you, but it wouldn’t hurt to try. Stick around, you’ll see *yourself* in other posts. I wish you luck and once again, welcome. ~Sage Hello all, I lurked around for a little and done quite a bit of searching, but I’ve not come across any description that comes the closest to matching my symptoms. I’m really tired of the drug roller coaster and don’t really want to try anything unless I find someone with similar problems that had success with a particular med or combo of meds. I’ve tried many. From the ones I’ve tried, the cure is worse than the disease. So if anyone has similar symptoms, I would appreciate hearing from you. TYPE OF MIGRAINE: Cyclical I have cyclical migraines. There’s no set pattern. A little while without them, and then a little while with them every day. Mine are usually on the right, but occasionally I get the left side migraine. DESCRIPTION OF MIGRAINE: Gradual They start slowly. I rarely get the spots, blurry vision, or visual auras that signify a very bad migraine. Most of mine are low to mid-grade migraines, but when they start they are there *all* the time. Sometimes I will first feel pain and swelling in the back of my neck, and then it crawls up the right side of my head until it hits the temple – migraine. Most of my migraines are there in the morning when I wake. I wake up with my right eye sore and swollen and pain in my right temple. With an ice pack on these mornings I can chase the migraine away for a while. If I’m lucky it won’t come back until the next day. However it usually returns in the afternoon and slowly builds in a crescendo. Depending on the severity I either can nap it off, ice pack it away, or take meds. Other times I wake up in the morning and just know it’s coming by the not-normal feeling I have. My wife didn’t believe me for a long time about this. I think she does finally. I really can’t explain the feeling. I just don’t feel right. MIGRAINE MEDS: Imitrex For me this was the magic pill. I don’t know what I did before it. The only problem is the rationing I must do since I only get 9 a month. So I stock up in the good times to have plenty in the lean times. I live in constant fear of running out. However this one pill cures all that ails me. It always cures the migraine as well as any muscle soreness I may have that preceded it. However it does cause my to pee a lot. I don’t quite understand why, but every 15 mns for an hour or two is par for the course. I don’t know if that’s important or not, but you never know. CONTRIBUTING PROBLEMS: Sleep I’ve never slept well, at least as an adult. I have constant daily fatigue or get sleep attacks. I’ve had all the sleep tests. I really don’t have sleep apnea. I don’t have narcolepsy. But I go through phases where if I don’t nap in the afternoon or evening I’m going to get a headache. My body completely shuts down and forces me to nap. I wake up feeling fine and fully refreshed. If I don’t nap, I will feel incredibly brain tired and headachy until I sleep for the night. Other times I feel like my body cycle just completely resets. I go for a few weeks ready for bed at 11pm or so and feel generally ok the next day. Then all the sudden I feel the exact same way at 5 in the afternoon. It’s like jet lag, but I haven’t gone anywhere. It’s a good bed migraines won’t be far behind. As with the headaches, this tends to cycle. Sometimes I don’t need much sleep and do fine. Sometimes I can’t get enough. I’ve tried a c-pap machine for the slight sleep apnea I had. The left me headachy every morning, so it really didn’t help. People with real sleep apnea feel immediate relief. I didn’t. As for sleep meds, I take elavil sometimes when my sleep cycle adjusts or I develop insomnia where I wake up in the early morning and can’t return to sleep. I also take melatonin, and it helps a little. It’s by no means a cure. EMOTIONAL FACTORS: Low grade bipolar II. I have mood swings. However they aren’t tremendous, and I’ve long since learned to control the mood swings through self discipline. I constantly examine myself from the outside in or as an objective bystander and ask myself if what I’m feeling makes sense. If it doesn’t, I act accordingly. This has solved the problems I used to have with impulsive actions. It has been diagnosed by a doctor. This isn’t just speculation on my part. Many people hear this described and think to themselves, "Everyone goes through mood swings." These people don’t understand. If you have it, you know you’re not normal, but you don’t know why. At least now I know why. As for my symptoms, my manic stage is brief but not overly traumatic. It can last a few days and in rare cases a few weeks. During these times I feel like I can take on the world and have changed jobs, gone back to school, taken on large projects, etc. I have always been known as someone who doesn’t finish what they started. This is because shortly after I start my mood changes, and I come back down to earth. Maybe someone sees this in themselves. My depressed state is not that bad. During these times I am unduly depressed but never to a tremendous and have never been suicidal. I also have a little ocd and medium anxiety attacks can hit me at any time. However, overall the bipolar aspect is not that bad. Apparently many people with migraines also have bp II. Unfortunately there hasn’t been a whole lot of research into dual cures, so maybe someone here recognizes themselves in me and has stumbled across something that works. Obviously this affects personal relationships. I could always hide this before I got married, but when you live with someone it’s impossible. Our sex life has never been normal because of my migraines and mood swings. Many times the over-excitement during sex brings on a migraine. As a result, I think something somewhere turns off the desire in order to avoid the migraine. It’s just never been normal. For anyone who experiences this, you know how difficult it can be. Your partner blames themselves, and no amount of explaining the mysteries of the brain will help. Unless you’re missing arms or legs or something obvious, sometimes people just don’t understand. "It’s all in your head!" How many times have I heard that. As if I could just make it stop at will. If only. OTHER FACTORS: Misc These are things that happen from time to time which aren’t normal but might be important to someone. Tremors: I get tremors semi-regularly. Never ones that shake my whole body, but I feel it internally. I’m a little weak around this time. I have been diagnosed with hypoglycemia also, but I check my blood sugar levels during my tremors and have ruled blood sugar out as a factor. My levels are fine. But the tremors leave me shaky all day and weak during athletic activities. A lot of times I just notice it in my face, where my mouth is shaky and won’t stay still. I can’t look at people without constantly adjusting to hide it, or I chew gum. Frequent urination: Sometimes I go through phases where I just pee all the time. Usually I’m also having some sort of a sleep attack at the same time, but not always. This could be totally
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Response:
Thanks Rebecca, I’m limited to 9 per month by my insurance company, so I guess I’m not limited to how many I can actually get from a pharmacy. I’d just have to pay full price for any I get over the 9 per month. The prospect of paying full price for every little pill can actually send some into full blown migraine from the price alone. However, my current neuro wasn’t too excited about me taking that many triptan’s. I called him recently to see if I could get a prescription for another triptan. I was hoping that I could rotate between the two and keep me good for a month. However he said they weren’t designed for that, and gave me something else. Something very NOT effective. I think it’s called midrin, and it’s not much more than a glorified aspirin. Either way, it does nothing for the migraines. This kind of bugged me actually. I know imitrex wasn’t designed as a preventative medication or something to take every day like depakote or topamax. However, I’ve never read anything to suggest that every day use has any negative effects. Therefore, I don’t see why I can’t take one every day when a migraine cycle hits. If anyone has any evidence to the contrary (or supportive), I’d appreciate it. The ironic thing is he has no problem with me taking heavy hitting medication that DO have negative side effects, some of them serious. Therefore it doesn’t make any sense to not allow me to take something that works, has no side effects, just in greater quantities. I’m thinking on finding someone new. The other problem I have is that in order to fix that migraine part and the bipolar part I need to see two different people. Unfortunately the psychological realm and the neurological realm just don’t mix. For people with crossover problems this is bad, but it also explains the lack of research into people with both problems. As a result, he won’t prescribe anything for psych problems. There just aren’t many doctors out there who specialize in this. I’d like to have one doctor oversee both problems. Preferably a doctor with a trial clinic who is constantly trial running new medication. I think a doctor such as this has a better chance of knowing case studies of people he recently worked with. So far, I haven’t found that doctor. I also have tons of pills lying around that I didn’t use. Which agravates me when some doctors think I’m just begging for more meds to abuse them. I’d give anything to be pill free, and every time I see a dr lift a suspicious eyebrow because I’m asking for more it really aggravates me. And I’ve never tried acupuncture. I’ve thought about it. I’ve had pressure point massages before, and they were fairly effective. I might actually give acupuncture a shot in the near future and see how it helps. I’m pretty much open to trying anything once. Marc
– Hide quoted text — Show quoted text – Dear Marc: It sounds like you have your hands full. I have two questions for you. Why are you limited to 9 Imitrex per month — is that what your doctor recommended or a cost issue? It’s a shame, because I have many pills lying around that I’ll never use (they didn’t work for me, but I didn’t realize until I filled the prescription). And, secondly, have you tried acupuncture? That’s one way to target all the specific problems you’re having. Good luck! Rebecca
Response:
Ah yes, this is an oversight on my part, and I should have included that in my original posting. When I said "cyclical" I should have used the term "cluster" instead. Sometimes I use the two terms interchangeably, but cluster is really a more descriptive and more accepted term for it. And I actually saw a headache specialist here in Dallas not too long ago. After seeing him I really didn’t see any difference between him and any other neurologist. I got the feeling from him I was being sort of pushed through. "Interesting problems, try this and tell me how it goes." I got the feeling I could have told him anything, and he would have prescribed the same thing. So I’m still looking for the right doctor. I talked in another posting about my frustration with my current one and who I’d like to find. These doctors are all smart, but I’d like to find one who doesn’t adhere to the "one size fits all" philosophy or whichever drug is new and in vogue at the time. It’s just frustrating. As a result, I’m trying to find a good list of drug candidates myself before I go back to a doctor. – Hide quoted text — Show quoted text – There is not enough information to feel very certain, but I wonder if you have cluster headaches rather than migraine. If you have not already done so, you might want to go to http://www.i-h-s.org, the International Headache Society’s site, go to guidelines, then criteria, and read through various types there to see what seems to fit best. Ultimately, and perhaps going directly without bothering with the reading suggested above, you would want to see a headache specialist.
Response:
Thanks Rebecca, However, my current neuro wasn’t too excited about me taking that many triptan’s. I called him recently to see if I could get a prescription for another triptan. I was hoping that I could rotate between the two and keep me good for a month. However he said they weren’t designed for that, and gave me something else. Something very NOT effective. I think it’s called midrin, and it’s not much more than a glorified aspirin. Either way, it does nothing for the migraines.
They don’t like to mix triptans and it can be dangerous for several reasons to do so. I used to rotate between imitrex nasal spray and DHE nasal spray (an ergotamine) but those two really shouldn’t even be kept in the same house at the same time. You could alternate between them with different scripts I guess. This kind of bugged me actually. I know imitrex wasn’t designed as a preventative medication or something to take every day like depakote or topamax. However, I’ve never read anything to suggest that every day use has any negative effects. Therefore, I don’t see why I can’t take one every day when a migraine cycle hits. If anyone has any evidence to the contrary (or supportive), I’d appreciate it.
They did some testing on Zomig as a preventive some years ago for clusters but it wasn’t effective. I can guess why but I’ll leave that for later. They are now testing frovatriptan as a preventive. Has a much longer half life than imitrex. Cephalalgia Volume 24 Issue 12 Page 1045 - December 2004 doi:10.1111/j.1468-2982.2004.00734.x Frovatriptan for the treatment of cluster headaches HC Siow1, P Pozo-Rosich1 & SD Silberstein1 Cluster headaches both episodic and chronic are some of the most challenging headaches to treat. Although effective treatments are now available, some patients continue to be unresponsive to standard therapy. We present 17 patients from our practice whom we treated preventively with frovatriptan, a new triptan with a long half-life. The promising results suggest that this medication may be an useful addition to our ammaterium against this painful disorder. I know people that give themselves "several" shots a day of imitrex, every day, for months. I wouldn’t recommend it though. There are reports coming out (finally) that imitrex is causing more headaches. Yes it works well but its also one of those great meds for the pharmicos. It works well but ends up creating more headaches therefore its needed more often. The ironic thing is he has no problem with me taking heavy hitting medication that DO have negative side effects, some of them serious. Therefore it doesn’t make any sense to not allow me to take something that works, has no side effects, just in greater quantities. I’m thinking on finding someone new.
well since you are interested in researching something new…take a look at this www.clusterbusters.com but, there is a problem to consider….(see below) The other problem I have is that in order to fix that migraine part and the bipolar part I need to see two different people. Unfortunately the psychological realm and the neurological realm just don’t mix. For people with crossover problems this is bad, but it also explains the lack of research into people with both problems.
This is the big drawback for the above mentioned treatment. Hallucinogens are also being tested with good results on OCD though. (so at least you could get a two for one) Sorry to say but you do have a very difficult set of……ummm….problems, to try and tackle. from your other post… "Ah yes, this is an oversight on my part, and I should have included that in my original posting. When I said "cyclical" I should have used the term "cluster" instead. Sometimes I use the two terms interchangeably, but cluster is really a more descriptive and more accepted term for it." This is not just a difference in terms. It is a very real difference in headache types. Migraines that come in what some docs call, "clusters" are not Cluster Headaches. Symptoms and treatments are very different. So, if you have been diagnosed as having Cluster Headaches, there are different things you should be doing than if you have been diagnosed with migraines that come in clusters. (assuming that, your diagnosis is correct.) Getting the "correct" diagnosis is the first step in getting better relief. Kadee gave you a great list of links..(Kadee does give good link 
if I can help, let me know, BobW
Response:
Thanks Bob, and to Kadee also. There’s some good information in there and has given me plenty of other areas to go research on. The shrooms is interesting. I’m not sure I’d have the cajones to try that right now, but I will keep track of the research. While it sounds crazy, it’s really not such a crazy idea when you consider the fact that some of the most effective medication in use right now comes from the same place that cocaine comes from. It’s not too far fetched to think that a derivative of other mind influencing things found in nature might be helpful. And wasn’t LSD a failed attempt at a prescription drug in the first place? Maybe a different version of that can be helpful as well. It’s also interesting the way doctors refer to some drugs as addictive forming in a bad way and some in a good way. I know what they mean, but some of the drugs prescribed for migraine prevention can kill you or cause serious side effects if you stop cold turkey. That’s some serious stuff. I would call that quite addictive. I do have one question for you: I don’t understand the difference between cluster headaches and migraines that come in clusters. I had always assumed that cluster headaches referred to migraines, but from what you are saying that’s not the case. I guess cluster headaches just refer to people who get normal headaches in clusters that aren’t migraines. Either way, I get migraines in clusters. Occasionally I get the isolated migraine. My dad said his migraines got better when he hit 30. However he had them really bad up until that point. Mine seem to be getting worse now that I’m a little over 30. It’s weird how it’s genetic but affects people in different ways. My great-grandmother got them as well, and getting one in the early 1900’s must have been brutal. Especially in the Texas heat with no A/C and no ice packs to help a little. Apparently for some relief she would have one of her kids tie a bandana around her head and tie it as tight as they could pull it. They said the bandana would bite into her head and into her temples, but that’s how she found some relief. I just can’t imagine what that must have been like. Marc
– Hide quoted text — Show quoted text – Thanks Rebecca, However, my current neuro wasn’t too excited about me taking that many triptan’s. I called him recently to see if I could get a prescription for another triptan. I was hoping that I could rotate between the two and keep me good for a month. However he said they weren’t designed for that, and gave me something else. Something very NOT effective. I think it’s called midrin, and it’s not much more than a glorified aspirin. Either way, it does nothing for the migraines. They don’t like to mix triptans and it can be dangerous for several reasons to do so. I used to rotate between imitrex nasal spray and DHE nasal spray (an ergotamine) but those two really shouldn’t even be kept in the same house at the same time. You could alternate between them with different scripts I guess. This kind of bugged me actually. I know imitrex wasn’t designed as a preventative medication or something to take every day like depakote or topamax. However, I’ve never read anything to suggest that every day use has any negative effects. Therefore, I don’t see why I can’t take one every day when a migraine cycle hits. If anyone has any evidence to the contrary (or supportive), I’d appreciate it. They did some testing on Zomig as a preventive some years ago for clusters but it wasn’t effective. I can guess why but I’ll leave that for later. They are now testing frovatriptan as a preventive. Has a much longer half life than imitrex. Cephalalgia Volume 24 Issue 12 Page 1045 - December 2004 doi:10.1111/j.1468-2982.2004.00734.x Frovatriptan for the treatment of cluster headaches HC Siow1, P Pozo-Rosich1 & SD Silberstein1 Cluster headaches both episodic and chronic are some of the most challenging headaches to treat. Although effective treatments are now available, some patients continue to be unresponsive to standard therapy. We present 17 patients from our practice whom we treated preventively with frovatriptan, a new triptan with a long half-life. The promising results suggest that this medication may be an useful addition to our ammaterium against this painful disorder. I know people that give themselves "several" shots a day of imitrex, every day, for months. I wouldn’t recommend it though. There are reports coming out (finally) that imitrex is causing more headaches. Yes it works well but its also one of those great meds for the pharmicos. It works well but ends up creating more headaches therefore its needed more often. The ironic thing is he has no problem with me taking heavy hitting medication that DO have negative side effects, some of them serious. Therefore it doesn’t make any sense to not allow me to take something that works, has no side effects, just in greater quantities. I’m thinking on finding someone new. well since you are interested in researching something new…take a look at this www.clusterbusters.com but, there is a problem to consider….(see below) The other problem I have is that in order to fix that migraine part and the bipolar part I need to see two different people. Unfortunately the psychological realm and the neurological realm just don’t mix. For people with crossover problems this is bad, but it also explains the lack of research into people with both problems. This is the big drawback for the above mentioned treatment. Hallucinogens are also being tested with good results on OCD though. (so at least you could get a two for one) Sorry to say but you do have a very difficult set of……ummm….problems, to try and tackle. from your other post… "Ah yes, this is an oversight on my part, and I should have included that in my original posting. When I said "cyclical" I should have used the term "cluster" instead. Sometimes I use the two terms interchangeably, but cluster is really a more descriptive and more accepted term for it." This is not just a difference in terms. It is a very real difference in headache types. Migraines that come in what some docs call, "clusters" are not Cluster Headaches. Symptoms and treatments are very different. So, if you have been diagnosed as having Cluster Headaches, there are different things you should be doing than if you have been diagnosed with migraines that come in clusters. (assuming that, your diagnosis is correct.) Getting the "correct" diagnosis is the first step in getting better relief. Kadee gave you a great list of links..(Kadee does give good link if I can help, let me know, BobW
Response:
– Hide quoted text — Show quoted text – Ah yes, this is an oversight on my part, and I should have included that in my original posting. When I said "cyclical" I should have used the term "cluster" instead. Sometimes I use the two terms interchangeably, but cluster is really a more descriptive and more accepted term for it. And I actually saw a headache specialist here in Dallas not too long ago. After seeing him I really didn’t see any difference between him and any other neurologist. I got the feeling from him I was being sort of pushed through. "Interesting problems, try this and tell me how it goes." I got the feeling I could have told him anything, and he would have prescribed the same thing. So I’m still looking for the right doctor. I talked in another posting about my frustration with my current one and who I’d like to find. These doctors are all smart, but I’d like to find one who doesn’t adhere to the "one size fits all" philosophy or whichever drug is new and in vogue at the time. It’s just frustrating. As a result, I’m trying to find a good list of drug candidates myself before I go back to a doctor. There is not enough information to feel very certain, but I wonder if you have cluster headaches rather than migraine. If you have not already done so, you might want to go to http://www.i-h-s.org, the International Headache Society’s site, go to guidelines, then criteria, and read through various types there to see what seems to fit best. Ultimately, and perhaps going directly without bothering with the reading suggested above, you would want to see a headache specialist.
There have been posts here suggesting that breathing oxygen by mask at a high flow rate–6 to 8 L/minute–may break them. One of the people who did the research on that said that it is important to lean forward–I gather so that the face is horizontal or nearly so–while doing it. I have seen somewhere else a notion that a lidocaine nasal spray helps some. Good luck. Sandy L
Response:
LSD had such dramaticly good results treating headaches, that the FDA asked if it could be made without the hallucinogenic properties……Sansert was the result. They traded hallucinations for fibrosis of the smooth muscle organs and said we were all better off. Sansert was recently taken off the US market after years of use.
– Hide quoted text — Show quoted text – Thanks Bob, and to Kadee also. There’s some good information in there and has given me plenty of other areas to go research on. The shrooms is interesting. I’m not sure I’d have the cajones to try that right now, but I will keep track of the research. While it sounds crazy, it’s really not such a crazy idea when you consider the fact that some of the most effective medication in use right now comes from the same place that cocaine comes from. It’s not too far fetched to think that a derivative of other mind influencing things found in nature might be helpful. And wasn’t LSD a failed attempt at a prescription drug in the first place? Maybe a different version of that can be helpful as well. Like ergotamine which I used years ago until I had a bad episode and it just made the pain worse. http://www.achenet.org/articles/61.php Many migraine sufferers rely on ergotamine preparations (e.g., Cafergot, Wigraine or Bellergal) or DHE to stop a migraine attack in progress. Sufferers from severe, frequent migraine or cluster headache are often prescribed methysergide (Sansert) to prevent their headaches. These commonly used headache drugs all belong to the ergot family. Like many other distinguished families, the ergots spring from humble beginnings, fungus, and include a disreputable ne’er-do-well, the hallucinogen LSD. The ergots are all derived from a mold called Claviceps purpurea that grows on rye. In the Middle Ages, there were frequent mass outbreaks of an ailment known as St. Anthony’s fire, caused by consuming toxic amounts of ergot in bread made from moldy grain. Sufferers experienced hallucinations, panic, convulsions, and painful burning in their limbs that followed a loss of circulation in constricted blood vessels. This vasoconstrictive effect of ergot led to its earliest medical use. Sixteenth-century midwives used the fungus to bring on labor and limit blood loss during childbirth. It’s also interesting the way doctors refer to some drugs as addictive forming in a bad way and some in a good way. I know what they mean, but some of the drugs prescribed for migraine prevention can kill you or cause serious side effects if you stop cold turkey. That’s some serious stuff. I would call that quite addictive. I do have one question for you: I don’t understand the difference between cluster headaches and migraines that come in clusters. I had always assumed that cluster headaches referred to migraines, but from what you are saying that’s not the case. I guess cluster headaches just refer to people who get normal headaches in clusters that aren’t migraines. Cluster headaches are entirely different from migraines and the treatment is different though some meds which work on migraines may also help some clusters. I will see if I can find the criteria. http://www.meldrum.demon.co.uk/migraine/clusterfaq1.txt "If you are a sufferer, you sure know it. Imagine a red hot poker being slowly driven through a single eye socket, lasting anywhere from 10 to 90 minutes. No wonder we pace back and forth, unable to relax, sleep or concentrate. We literally bang our heads against walls, as that pain is a relief." (TW) "The attacks are relatively short, 15 minutes to 3 hours, and tend to recur in "clusters" several times a day or the same time each day for several days. Attacks often come on during the night. The patient with cluster headache often will have one or more of the following symptoms on the affected side during the attack: tearing or reddening of the eye, eyelid edema, contraction of the pupil, drooping of the eyelid, nasal congestion or discharge. The individual may have headache-free periods of months or even years between clusters." They must be updating this website as I couldn’t access the link. Here is the cached version though.
http://64.233.167.104/search?q=cache:KwrA3gudOyQJ:www.upstate.edu/neu… and Migraine diagnosis
http://64.233.167.104/search?q=cache:93MG9ID99OcJ:www.upstate.edu/neu… Natural Migraine Treatment FAQ http://www.faqs.org/faqs/medicine/migraine/natural-cures/ ashm archives
http://groups.google.com/groups?hl=en&lr=&ie=UTF-8&group=alt.support…. – Hide quoted text — Show quoted text – Kadee
Response:
Hello Marc! I can’t believe how many factors you describe which I can really relate to! I read your post (must have taken you ages to write all that!) and just thought, "Yep….yep….yep….yep….!" Sorry to hear about your problems – I can understand a bit how you are feeling! Perhaps I might be your migraine twin! Apologies, I can’t write much now – I’ve got a headache!! Actually, I have to go to bed too – up early in the morning. Will try to post more of my details sometime within the next few days, and see how you think we compare! I’m not sure the cause of our headaches are the same, but it’s still interesting to discuss! Hazel xx (28, England, sufferer since 1997)
– Hide quoted text — Show quoted text – Hello all, I lurked around for a little and done quite a bit of searching, but I’ve not come across any description that comes the closest to matching my symptoms. I’m really tired of the drug roller coaster and don’t really want to try anything unless I find someone with similar problems that had success with a particular med or combo of meds. I’ve tried many. From the ones I’ve tried, the cure is worse than the disease. So if anyone has similar symptoms, I would appreciate hearing from you. TYPE OF MIGRAINE: Cyclical I have cyclical migraines. There’s no set pattern. A little while without them, and then a little while with them every day. Mine are usually on the right, but occasionally I get the left side migraine. DESCRIPTION OF MIGRAINE: Gradual They start slowly. I rarely get the spots, blurry vision, or visual auras that signify a very bad migraine. Most of mine are low to mid-grade migraines, but when they start they are there *all* the time. Sometimes I will first feel pain and swelling in the back of my neck, and then it crawls up the right side of my head until it hits the temple – migraine. Most of my migraines are there in the morning when I wake. I wake up with my right eye sore and swollen and pain in my right temple. With an ice pack on these mornings I can chase the migraine away for a while. If I’m lucky it won’t come back until the next day. However it usually returns in the afternoon and slowly builds in a crescendo. Depending on the severity I either can nap it off, ice pack it away, or take meds. Other times I wake up in the morning and just know it’s coming by the not-normal feeling I have. My wife didn’t believe me for a long time about this. I think she does finally. I really can’t explain the feeling. I just don’t feel right. MIGRAINE MEDS: Imitrex For me this was the magic pill. I don’t know what I did before it. The only problem is the rationing I must do since I only get 9 a month. So I stock up in the good times to have plenty in the lean times. I live in constant fear of running out. However this one pill cures all that ails me. It always cures the migraine as well as any muscle soreness I may have that preceded it. However it does cause my to pee a lot. I don’t quite understand why, but every 15 mns for an hour or two is par for the course. I don’t know if that’s important or not, but you never know. CONTRIBUTING PROBLEMS: Sleep I’ve never slept well, at least as an adult. I have constant daily fatigue or get sleep attacks. I’ve had all the sleep tests. I really don’t have sleep apnea. I don’t have narcolepsy. But I go through phases where if I don’t nap in the afternoon or evening I’m going to get a headache. My body completely shuts down and forces me to nap. I wake up feeling fine and fully refreshed. If I don’t nap, I will feel incredibly brain tired and headachy until I sleep for the night. Other times I feel like my body cycle just completely resets. I go for a few weeks ready for bed at 11pm or so and feel generally ok the next day. Then all the sudden I feel the exact same way at 5 in the afternoon. It’s like jet lag, but I haven’t gone anywhere. It’s a good bed migraines won’t be far behind. As with the headaches, this tends to cycle. Sometimes I don’t need much sleep and do fine. Sometimes I can’t get enough. I’ve tried a c-pap machine for the slight sleep apnea I had. The left me headachy every morning, so it really didn’t help. People with real sleep apnea feel immediate relief. I didn’t. As for sleep meds, I take elavil sometimes when my sleep cycle adjusts or I develop insomnia where I wake up in the early morning and can’t return to sleep. I also take melatonin, and it helps a little. It’s by no means a cure. EMOTIONAL FACTORS: Low grade bipolar II. I have mood swings. However they aren’t tremendous, and I’ve long since learned to control the mood swings through self discipline. I constantly examine myself from the outside in or as an objective bystander and ask myself if what I’m feeling makes sense. If it doesn’t, I act accordingly. This has solved the problems I used to have with impulsive actions. It has been diagnosed by a doctor. This isn’t just speculation on my part. Many people hear this described and think to themselves, "Everyone goes through mood swings." These people don’t understand. If you have it, you know you’re not normal, but you don’t know why. At least now I know why. As for my symptoms, my manic stage is brief but not overly traumatic. It can last a few days and in rare cases a few weeks. During these times I feel like I can take on the world and have changed jobs, gone back to school, taken on large projects, etc. I have always been known as someone who doesn’t finish what they started. This is because shortly after I start my mood changes, and I come back down to earth. Maybe someone sees this in themselves. My depressed state is not that bad. During these times I am unduly depressed but never to a tremendous and have never been suicidal. I also have a little ocd and medium anxiety attacks can hit me at any time. However, overall the bipolar aspect is not that bad. Apparently many people with migraines also have bp II. Unfortunately there hasn’t been a whole lot of research into dual cures, so maybe someone here recognizes themselves in me and has stumbled across something that works. Obviously this affects personal relationships. I could always hide this before I got married, but when you live with someone it’s impossible. Our sex life has never been normal because of my migraines and mood swings. Many times the over-excitement during sex brings on a migraine. As a result, I think something somewhere turns off the desire in order to avoid the migraine. It’s just never been normal. For anyone who experiences this, you know how difficult it can be. Your partner blames themselves, and no amount of explaining the mysteries of the brain will help. Unless you’re missing arms or legs or something obvious, sometimes people just don’t understand. "It’s all in your head!" How many times have I heard that. As if I could just make it stop at will. If only. OTHER FACTORS: Misc These are things that happen from time to time which aren’t normal but might be important to someone. Tremors: I get tremors semi-regularly. Never ones that shake my whole body, but I feel it internally. I’m a little weak around this time. I have been diagnosed with hypoglycemia also, but I check my blood sugar levels during my tremors and have ruled blood sugar out as a factor. My levels are fine. But the tremors leave me shaky all day and weak during athletic activities. A lot of times I just notice it in my face, where my mouth is shaky and won’t stay still. I can’t look at people without constantly adjusting to hide it, or I chew gum. Frequent urination: Sometimes I go through phases where I just pee all the time. Usually I’m also having some sort of a sleep attack at the same time, but not always. This could be totally unrelated, but seems to fall in a pattern of when I’m having other problems as well. Vision problems: My focus comes and goes. That’s probably because of the eye swelling, but it’s noticeable. Sometimes I can see things without my glasses, and sometimes I can’t. So, that’s about it. The problem with having migraine and other brain problems is that there are so many things that can go wrong in the brain, so many chemicals and so many different types of meds, that one can spend years trying to find meds that work. The doctors I’ve seen aren’t basing my treatment on any case studies to try and narrow the possibilities but simply on the latest/greatest drug or whichever they happen to have the most samples of. I can’t do that anymore. The cure may be out there for me, but I don’t want to lose any more weeks of my life trying to find it. I hope that by finding someone with symptoms as close to mine as possible I can increase my chances of finding something that works. Thanks for taking the time, Marc
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– Hide quoted text — Show quoted text – Thanks Rebecca, However, my current neuro wasn’t too excited about me taking that many triptan’s. I called him recently to see if I could get a prescription for another triptan. I was hoping that I could rotate between the two and keep me good for a month. However he said they weren’t designed for that, and gave me something else. Something very NOT effective. I think it’s called midrin, and it’s not much more than a glorified aspirin. Either way, it does nothing for the migraines. They don’t like to mix triptans and it can be dangerous for several reasons to do so. I used to rotate between imitrex nasal spray and DHE nasal spray (an ergotamine) but those two really shouldn’t even be kept in the same house at the same time. You could alternate between them with different scripts I guess. This kind of bugged me actually. I know imitrex wasn’t designed as a preventative medication or something to take every day like depakote or topamax. However, I’ve never read anything to suggest that every day use has any negative effects. Therefore, I don’t see why I can’t take one every day when a migraine cycle hits. If anyone has any evidence to the contrary (or supportive), I’d appreciate it. They did some testing on Zomig as a preventive some years ago for clusters but it wasn’t effective. I can guess why but I’ll leave that for later. They are now testing frovatriptan as a preventive. Has a much longer half life than imitrex. Cephalalgia Volume 24 Issue 12 Page 1045 - December 2004 doi:10.1111/j.1468-2982.2004.00734.x Frovatriptan for the treatment of cluster headaches HC Siow1, P Pozo-Rosich1 & SD Silberstein1 Cluster headaches both episodic and chronic are some of the most challenging headaches to treat. Although effective treatments are now available, some patients continue to be unresponsive to standard therapy. We present 17 patients from our practice whom we treated preventively with frovatriptan, a new triptan with a long half-life. The promising results suggest that this medication may be an useful addition to our ammaterium against this painful disorder. I know people that give themselves "several" shots a day of imitrex, every day, for months. I wouldn’t recommend it though. There are reports coming out (finally) that imitrex is causing more headaches. Yes it works well but its also one of those great meds for the pharmicos. It works well but ends up creating more headaches therefore its needed more often. The ironic thing is he has no problem with me taking heavy hitting medication that DO have negative side effects, some of them serious. Therefore it doesn’t make any sense to not allow me to take something that works, has no side effects, just in greater quantities. I’m thinking on finding someone new. well since you are interested in researching something new…take a look at this www.clusterbusters.com but, there is a problem to consider….(see below) The other problem I have is that in order to fix that migraine part and the bipolar part I need to see two different people. Unfortunately the psychological realm and the neurological realm just don’t mix. For people with crossover problems this is bad, but it also explains the lack of research into people with both problems. This is the big drawback for the above mentioned treatment. Hallucinogens are also being tested with good results on OCD though. (so at least you could get a two for one) Sorry to say but you do have a very difficult set of……ummm….problems, to try and tackle. from your other post… "Ah yes, this is an oversight on my part, and I should have included that in my original posting. When I said "cyclical" I should have used the term "cluster" instead. Sometimes I use the two terms interchangeably, but cluster is really a more descriptive and more accepted term for it." This is not just a difference in terms. It is a very real difference in headache types. Migraines that come in what some docs call, "clusters" are not Cluster Headaches. Symptoms and treatments are very different. So, if you have been diagnosed as having Cluster Headaches, there are different things you should be doing than if you have been diagnosed with migraines that come in clusters. (assuming that, your diagnosis is correct.) Getting the "correct" diagnosis is the first step in getting better relief. Kadee gave you a great list of links..(Kadee does give good link if I can help, let me know, BobW
Why, what happens? Is it like mixing bleach and ammonia or something? Kelly
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Why, what happens? Is it like mixing bleach and ammonia or something? Kelly
Mixing different triptans can be tricky due to the different half-lives involved. Add to that, the fact that most people trying to treat migraines are also often taking SSRI’s and I just think that it is a very dangerous combination if not properly monitored. Serotonin syndrome is a nasty and possibly deadly condition. There isn’t enough data yet and if you start mixing say, frova which has a half life of I believe (without looking) 22-24 hours and then start injecting imitrex with a short half life (a couple hours) you could be pumping imitrex into a system that is already still flooded with frovatriptan, as an example. Add that to maybe a preventive courses of Effexor or other SSRI’s and ….well…..it’s not safe. Most cluster patients don’t use SSRI’s because they just don’t work. If they did, there would be more problems when they start giving themselves 5 or 6 shots of imitrex a day. if you have acrobat reader…. http://www.courses.ahc.umn.edu/pharmacy/6124/Serotonin%20Syndrome.pdf… and check out section III You dont want to mix serotonin agonists.
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I wondered something else. When you say this: """ I know people that give themselves "several" shots a day of imitrex, every day, for months. I wouldn’t recommend it though. There are reports coming out (finally) that imitrex is causing more headaches. Yes it works well but its also one of those great meds for the pharmicos. It works well but ends up creating more headaches therefore its needed more often. """ I can’t help but wonder how do they know that drugs like imitrex cause migraines. People say the same thing about barbituates. Butal worked for me in some cases, and I took that on occasion. I have a certain type of headache I get that imitrex doesn’t cure. It’ not a migraine, but it’s more of an incredible pressure headache. Alleve or any otc drugs won’t cure it. The only drug that did was Butal or another hardcore pain med. My new doctor wouldn’t give it to me because he said it was addictive and caused more headaches than it cured. However personally I never had any rebound headaches. I never had to take Butal more than once in a 2 or 3 month period. But now, I just lose a whole day because my personal experience doesn’t seem to carry as much weight as what he’s read elsewhere. That’s very frustrating for me. But as for rebound migraines, the thing is with people like me, chances are I’m getting a migraine the next day anyway. So what does it really matter? At least I get some relief in the short term. So I guess my main question is, if a person gets a migraine the day after taking a drug like Imitrex, how do they know that Imitrex caused it and that person wouldn’t have got another migraine the next day anyway? It seems to me that Imitrex simply provides short term relief, and once it wears off the condition returns. Knowing that, I don’t understand how a case can made that it actually causes the migraine when the condition was already there in the first place. That’s confusing to me. Marc
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Here is a post from an old friend back in ‘98 Still holds true… "Migraines seem to have a "life of their own". Once begun, many think that the underlying physiological processes continue regardless of what the patient does. Thus, whether one takes an analgesic or an abortive vasoconstrictor, when the medication wears off, the HA reappears if the underlying processes are still continuing. This is called "recurrence". Rebound refers to an increase in the frequency of migraine from overuse of vasoconstrictors, and, possibly analgesics. These are "new" HAs, not a continuation of an ongoing, underlying HA. If one aborts a HA which comes back within 24 hours, it is "assumed" to be a recurrence. If a HA appears after 24 hours, it is a new HA. If this is part of a pattern of increasing frequency with increasing use of medication, then it may be a rebound. The 24 hour rule is ARBITRARY, but it is AGREED upon, and is used for the sake of intelligent discussion. But, the "concept" of rebound is very different from recurrence." You can take that description to the bank. Imitrex and verapamil have both been linked to an increase in the number of headaches for some people. This is easier to tell with cluster headache sufferers. If they are getting an average of 3 per day during each cycle over the last 15 years and after introducing Imitrex, that average jumps to 5 per day, something is happening. If it happens to one person, it could be many things. When it happens to the majority of people in a study looking at triptan use, when other factors are factored out…..the finger points toward imitrex. Personally, I don’t attribute this increase to rebound. I attribute it to the triptans setting the neural pathways to the "on" position and making them more susceptable to headaches. Somewhat of a difference. Then again, it’s only my opinion. bobW
– Hide quoted text — Show quoted text – I wondered something else. When you say this: """ I know people that give themselves "several" shots a day of imitrex, every day, for months. I wouldn’t recommend it though. There are reports coming out (finally) that imitrex is causing more headaches. Yes it works well but its also one of those great meds for the pharmicos. It works well but ends up creating more headaches therefore its needed more often. """ I can’t help but wonder how do they know that drugs like imitrex cause migraines. People say the same thing about barbituates. Butal worked for me in some cases, and I took that on occasion. I have a certain type of headache I get that imitrex doesn’t cure. It’ not a migraine, but it’s more of an incredible pressure headache. Alleve or any otc drugs won’t cure it. The only drug that did was Butal or another hardcore pain med. My new doctor wouldn’t give it to me because he said it was addictive and caused more headaches than it cured. However personally I never had any rebound headaches. I never had to take Butal more than once in a 2 or 3 month period. But now, I just lose a whole day because my personal experience doesn’t seem to carry as much weight as what he’s read elsewhere. That’s very frustrating for me. But as for rebound migraines, the thing is with people like me, chances are I’m getting a migraine the next day anyway. So what does it really matter? At least I get some relief in the short term. So I guess my main question is, if a person gets a migraine the day after taking a drug like Imitrex, how do they know that Imitrex caused it and that person wouldn’t have got another migraine the next day anyway? It seems to me that Imitrex simply provides short term relief, and once it wears off the condition returns. Knowing that, I don’t understand how a case can made that it actually causes the migraine when the condition was already there in the first place. That’s confusing to me. Marc
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– Hide quoted text — Show quoted text – Thanks Bob, and to Kadee also. There’s some good information in there and has given me plenty of other areas to go research on. The shrooms is interesting. I’m not sure I’d have the cajones to try that right now, but I will keep track of the research. While it sounds crazy, it’s really not such a crazy idea when you consider the fact that some of the most effective medication in use right now comes from the same place that cocaine comes from. It’s not too far fetched to think that a derivative of other mind influencing things found in nature might be helpful. And wasn’t LSD a failed attempt at a prescription drug in the first place? Maybe a different version of that can be helpful as well. Like ergotamine which I used years ago until I had a bad episode and it just made the pain worse. http://www.achenet.org/articles/61.php Many migraine sufferers rely on ergotamine preparations (e.g., Cafergot, Wigraine or Bellergal) or DHE to stop a migraine attack in progress. Sufferers from severe, frequent migraine or cluster headache are often prescribed methysergide (Sansert) to prevent their headaches. These commonly used headache drugs all belong to the ergot family. Like many other distinguished families, the ergots spring from humble beginnings, fungus, and include a disreputable ne’er-do-well, the hallucinogen LSD. The ergots are all derived from a mold called Claviceps purpurea that grows on rye. In the Middle Ages, there were frequent mass outbreaks of an ailment known as St. Anthony’s fire, caused by consuming toxic amounts of ergot in bread made from moldy grain. Sufferers experienced hallucinations, panic, convulsions, and painful burning in their limbs that followed a loss of circulation in constricted blood vessels. This vasoconstrictive effect of ergot led to its earliest medical use. Sixteenth-century midwives used the fungus to bring on labor and limit blood loss during childbirth. It’s also interesting the way doctors refer to some drugs as addictive forming in a bad way and some in a good way. I know what they mean, but some of the drugs prescribed for migraine prevention can kill you or cause serious side effects if you stop cold turkey. That’s some serious stuff. I would call that quite addictive. I do have one question for you: I don’t understand the difference between cluster headaches and migraines that come in clusters. I had always assumed that cluster headaches referred to migraines, but from what you are saying that’s not the case. I guess cluster headaches just refer to people who get normal headaches in clusters that aren’t migraines. Cluster headaches are entirely different from migraines and the treatment is different though some meds which work on migraines may also help some clusters. I will see if I can find the criteria. http://www.meldrum.demon.co.uk/migraine/clusterfaq1.txt "If you are a sufferer, you sure know it. Imagine a red hot poker being slowly driven through a single eye socket, lasting anywhere from 10 to 90 minutes. No wonder we pace back and forth, unable to relax, sleep or concentrate. We literally bang our heads against walls, as that pain is a relief." (TW) "The attacks are relatively short, 15 minutes to 3 hours, and tend to recur in "clusters" several times a day or the same time each day for several days. Attacks often come on during the night. The patient with cluster headache often will have one or more of the following symptoms on the affected side during the attack: tearing or reddening of the eye, eyelid edema, contraction of the pupil, drooping of the eyelid, nasal congestion or discharge. The individual may have headache-free periods of months or even years between clusters." They must be updating this website as I couldn’t access the link. Here is the cached version though. http://64.233.167.104/search?q=cache:KwrA3gudOyQJ:www.upstate.edu/neu… and Migraine diagnosis http://64.233.167.104/search?q=cache:93MG9ID99OcJ:www.upstate.edu/neu… Natural Migraine Treatment FAQ http://www.faqs.org/faqs/medicine/migraine/natural-cures/ ashm archives http://groups.google.com/groups?hl=en&lr=&ie=UTF-8&group=alt.support…. Kadee
You forgot one of it’s most interesting roles in history: To help the people of Salem learn of the witches of Salem as their ergot-chomping little friends told them of the terrible things the "witches" were doing to them. It’s interesting that apparently the midwives in Europe in the same time were able to figure out this was caused by a fungus, but over here, we stopped at "She must be a witch–the kid says so!" Anyway, I always think of "the ladies" when my dHEA kicks in.
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