Question:

– Hide quoted text — Show quoted text – Hi. My name is Lisa. I have read messages on this board for some tme now, and thought maybe it was time for me to join in. Maybe you could give me some advice or atleast support. I am 28 years old, and have migraines since I was 14. By my mid teens, the migraines seemed to me triggered hormonally. I usually would get them only if I was pregnant or on birth control pills. There were those few exceptions, but very rare. I mean maybe 2 per year. I had a daughter in August 2002 and had migraines through the whole pregnancy – as usual. I would normally get 5-6 a month, and sometimes more. But this time they were different. I had 2 what they call "complicated migraines". It freaked me out. I could not talk, I could not move my right side, and I was completely blind. The doctors told me not to worry as long as things were back to normal within 2-3 hours, which they were. So I ended up getting induced early with her, so that the headaches would go away faster, and after she was born, they did not go away. I mean they were not any worse, but they had always gone away before. Well to make sure we did not go through that again, I went to get my tubes tied, and found out in January of 2003 that I was pregnant again. This time, things took a turn for the worse. I had HA constantly and they were worse than before. I ended up taking pain meds 4-5 days per week and then I ended up changing over to narcotic injections because the pain pills were not working anymore. I ended up getting those 1-2 times per week. Then all of a sudden things got bad, and I mean REALLY bad. In May 2003, I got a compliacted migraine again. I was again unable to speak, (it was all jarbled like baby talk) I was completely blind, and I lost all movement of my right side. Since then things have never been the same. I have not been HA free since then. I have HA 24 hours a day, 7 days a week. I get all the migraine symptoms like the auras, the nausea, etc. atleast 4 times a day. I have been told by 4 neuro that I can not take any triptan or ergot drugs because of the complicated migraines which I get 2-3 times a week still. I had tried imitrex before the complicated ones, which made me feel like my head was exploding of my shoulders. I tried cafergot previously, and it did nothing. I have tried verapamil, propanolol, depacote, butalbital, topomax, and a few others I can not remember. Nothing has ever worked. I heard the whole "it is probably a rebound HA", so I went off of all meds that I was taking (approx 250 pain pills per month and 4 narcotic injections per week (yes 4 per week!!) and needless to say, I wanted to die!!!!! But atleast I can say that I tried to make sure it was not that. I wish it was, then they would be gone! They have done 3 MRI’s and they are all within normal limits. So now I am taking 50mg of Elavil at night, 45mg of long acting Morphine twice a day, and other pain pills for break through pain. I also still get 1-2 injections per week. I am not asking for a cure. I have figured out by now, that there probably is not one. But if you guys are open to sharing some support, it would be greatly appreciated!! I have tried 2nd, 3rd, 4th opinions, and more. They have all said that what I am doing right now is the best thing. I am still not HA free, even with all the meds I am on, but atleast I can somewhat function!! I have a wonderful husband that I have been married to for 10 years, and I have 5 children that I miss taking appropriate care of. If you guys have any ideas, I am surely open to them. I did go to a HA clinic, but they said I was ot a good candidate, and I went to a pain clinic, and they said they do not deal woth HA’s. So here I am, hoping to hear that I am not alone!! Hope someone was willing to take they time to read my story and maybe wants to be a cyber-friend! Sincerly; Lisa K.

A couple of questions:  Are your still having one-sided paralysis with the headaches?  Does anyone in your family have similar headaches? It sounds a bit like hemiplegic migraine, which often responds to verapamil at sufficient dosage.  Theoretically, addition of magnesium and CoQ10 could help the effect of the verapamil, but I know of no studies to bear that out.

Response:

Hi Lisa,  I was adopted so I too have no medical history to go on but my grand daughter and grandson have migraines that I have passed on to them. I have been at this for 56 years and other than taking Imitrex I think what has slowed them down is Methadone and Topamax that I take for my chronic pain.  I never have gotten the aura’s but what my signals are is I pee alot before I get one and my mind gets wirly.   Welcome to the group and you are not alone when you are here.. Ronnie

– Hide quoted text — Show quoted text – Thankyou for your response. I will definetly check into that. I do still have the paralysis about 2-3 times per week. My 8 year old daughter has been diagnosed with migraines. They are just normal? migraines where she gets nausea and then the pain. She has never had the aura’s before the HA starts, atleast not that we know of. She only gets them about once every couple of months, and her HA’s are manageable with preventative treatment. Nobody else in my family had ever had migraines before me, but a couple of  them has popped up saying that they think the HA’s they had all their life must have been migraines. I highly doubt that, Just because from my own experience, if you have a migraine…. YOU KNOW IT, AND NEVER FORGET IT!!!!! My dad was adopted, so we don’t know any medical history about his side of the family. There were times I think it would be so nice to know. I did not put this in my original post, but with my last pregnancy, I was hospitalized (not just the ER) 7 times JUST to try to get the pain under control! It was terrible. Anyway, thanks again. I will check into the magnesium and the CoQ10. Lisa K. Hi. My name is Lisa. I have read messages on this board for some tme now, and thought maybe it was time for me to join in. Maybe you could give me some advice or atleast support. I am 28 years old, and have migraines since I was 14. By my mid teens, the migraines seemed to me triggered hormonally. I usually would get them only if I was pregnant or on birth control pills. There were those few exceptions, but very rare. I mean maybe 2 per year. I had a daughter in August 2002 and had migraines through the whole pregnancy – as usual. I would normally get 5-6 a month, and sometimes more. But this time they were different. I had 2 what they call "complicated migraines". It freaked me out. I could not talk, I could not move my right side, and I was completely blind. The doctors told me not to worry as long as things were back to normal within 2-3 hours, which they were. So I ended up getting induced early with her, so that the headaches would go away faster, and after she was born, they did not go away. I mean they were not any worse, but they had always gone away before. Well to make sure we did not go through that again, I went to get my tubes tied, and found out in January of 2003 that I was pregnant again. This time, things took a turn for the worse. I had HA constantly and they were worse than before. I ended up taking pain meds 4-5 days per week and then I ended up changing over to narcotic injections because the pain pills were not working anymore. I ended up getting those 1-2 times per week. Then all of a sudden things got bad, and I mean REALLY bad. In May 2003, I got a compliacted migraine again. I was again unable to speak, (it was all jarbled like baby talk) I was completely blind, and I lost all movement of my right side. Since then things have never been the same. I have not been HA free since then. I have HA 24 hours a day, 7 days a week. I get all the migraine symptoms like the auras, the nausea, etc. atleast 4 times a day. I have been told by 4 neuro that I can not take any triptan or ergot drugs because of the complicated migraines which I get 2-3 times a week still. I had tried imitrex before the complicated ones, which made me feel like my head was exploding of my shoulders. I tried cafergot previously, and it did nothing. I have tried verapamil, propanolol, depacote, butalbital, topomax, and a few others I can not remember. Nothing has ever worked. I heard the whole "it is probably a rebound HA", so I went off of all meds that I was taking (approx 250 pain pills per month and 4 narcotic injections per week (yes 4 per week!!) and needless to say, I wanted to die!!!!! But atleast I can say that I tried to make sure it was not that. I wish it was, then they would be gone! They have done 3 MRI’s and they are all within normal limits. So now I am taking 50mg of Elavil at night, 45mg of long acting Morphine twice a day, and other pain pills for break through pain. I also still get 1-2 injections per week. I am not asking for a cure. I have figured out by now, that there probably is not one. But if you guys are open to sharing some support, it would be greatly appreciated!! I have tried 2nd, 3rd, 4th opinions, and more. They have all said that what I am doing right now is the best thing. I am still not HA free, even with all the meds I am on, but atleast I can somewhat function!! I have a wonderful husband that I have been married to for 10 years, and I have 5 children that I miss taking appropriate care of. If you guys have any ideas, I am surely open to them. I did go to a HA clinic, but they said I was ot a good candidate, and I went to a pain clinic, and they said they do not deal woth HA’s. So here I am, hoping to hear that I am not alone!! Hope someone was willing to take they time to read my story and maybe wants to be a cyber-friend! Sincerly; Lisa K. A couple of questions:  Are your still having one-sided paralysis with the headaches?  Does anyone in your family have similar headaches? It sounds a bit like hemiplegic migraine, which often responds to verapamil at sufficient dosage.  Theoretically, addition of magnesium and CoQ10 could help the effect of the verapamil, but I know of no studies to bear that out.

Response:

Lisa, you poor thing.  You are way too young to already be struggling this much…not that any age is really worthy of that great award, but it sounds like you have been through a lot.  I didn’t have children, several miscarriages and ectopics, but I know my hormonal migraines got worse as time went on and each of those pregnancies seemed to have brought worse migraines. Your migraines sound so much more complicated than mine, although I do have a daily migraine that I treat.  I’ve never found a preventive that worked and it’s been hard.  However, I have gotten my seriously bad ones under control with a continuous birth control pill, Yasmin, that I take two times a day.  They found that it was the only bcp I can take, but I have to have two doses of it.  Strange, but true.  I see a specialist and it took me a long time to find her.  I would suspect you might have to do a lot of searching to find a good doctor willing to actually go through this with you…I know that is hard to do…been there.  There are also good pain management doctors out there who do treat migraines, and somewhat effectively. Can you share with the group where you live so maybe some people who are in the area can offer some ideas?  Also, are you a stay at home mom, or do you work?  Do you have health insurance that helps you out or are you fairly limited by your insurance when it comes to selection of doctors? Just some questions I thought I would ask…maybe we can throw around some ideas for you.  We welcome you, but are so sad that you’re in pain and have to join us under these conditions. We’d love to be your "pals." Michelle

– Hide quoted text — Show quoted text – Hi. My name is Lisa. I have read messages on this board for some tme now, and thought maybe it was time for me to join in. Maybe you could give me some advice or atleast support. I am 28 years old, and have migraines since I was 14. By my mid teens, the migraines seemed to me triggered hormonally. I usually would get them only if I was pregnant or on birth control pills. There were those few exceptions, but very rare. I mean maybe 2 per year. I had a daughter in August 2002 and had migraines through the whole pregnancy – as usual. I would normally get 5-6 a month, and sometimes more. But this time they were different. I had 2 what they call "complicated migraines". It freaked me out. I could not talk, I could not move my right side, and I was completely blind. The doctors told me not to worry as long as things were back to normal within 2-3 hours, which they were. So I ended up getting induced early with her, so that the headaches would go away faster, and after she was born, they did not go away. I mean they were not any worse, but they had always gone away before. Well to make sure we did not go through that again, I went to get my tubes tied, and found out in January of 2003 that I was pregnant again. This time, things took a turn for the worse. I had HA constantly and they were worse than before. I ended up taking pain meds 4-5 days per week and then I ended up changing over to narcotic injections because the pain pills were not working anymore. I ended up getting those 1-2 times per week. Then all of a sudden things got bad, and I mean REALLY bad. In May 2003, I got a compliacted migraine again. I was again unable to speak, (it was all jarbled like baby talk) I was completely blind, and I lost all movement of my right side. Since then things have never been the same. I have not been HA free since then. I have HA 24 hours a day, 7 days a week. I get all the migraine symptoms like the auras, the nausea, etc. atleast 4 times a day. I have been told by 4 neuro that I can not take any triptan or ergot drugs because of the complicated migraines which I get 2-3 times a week still. I had tried imitrex before the complicated ones, which made me feel like my head was exploding of my shoulders. I tried cafergot previously, and it did nothing. I have tried verapamil, propanolol, depacote, butalbital, topomax, and a few others I can not remember. Nothing has ever worked. I heard the whole "it is probably a rebound HA", so I went off of all meds that I was taking (approx 250 pain pills per month and 4 narcotic injections per week (yes 4 per week!!) and needless to say, I wanted to die!!!!! But atleast I can say that I tried to make sure it was not that. I wish it was, then they would be gone! They have done 3 MRI’s and they are all within normal limits. So now I am taking 50mg of Elavil at night, 45mg of long acting Morphine twice a day, and other pain pills for break through pain. I also still get 1-2 injections per week. I am not asking for a cure. I have figured out by now, that there probably is not one. But if you guys are open to sharing some support, it would be greatly appreciated!! I have tried 2nd, 3rd, 4th opinions, and more. They have all said that what I am doing right now is the best thing. I am still not HA free, even with all the meds I am on, but atleast I can somewhat function!! I have a wonderful husband that I have been married to for 10 years, and I have 5 children that I miss taking appropriate care of. If you guys have any ideas, I am surely open to them. I did go to a HA clinic, but they said I was ot a good candidate, and I went to a pain clinic, and they said they do not deal woth HA’s. So here I am, hoping to hear that I am not alone!! Hope someone was willing to take they time to read my story and maybe wants to be a cyber-friend! Sincerly; Lisa K.

Response:

Ronnie;     Thanks for the open arms of invitation for me to be here. Being alone is something I have always felt. Family is great, and I would not wish things to be any other way, but when you have migraines like this, you feel so alone, because you know that NOBODY around you has a clue about what you are dealing with. My family for a long time had the attitude of "take an aspirin and get over it". They just don’t understand. I wish they could, but I certainly would NEVER wish migraines on anybody. Not even my worst enemy!!  So I don’ t think they ever will truly comprehend what we go through. Again, thanks for the kind words. Lisa K.

– Hide quoted text — Show quoted text – Hi Lisa,  I was adopted so I too have no medical history to go on but my grand daughter and grandson have migraines that I have passed on to them. I have been at this for 56 years and other than taking Imitrex I think what has slowed them down is Methadone and Topamax that I take for my chronic pain.  I never have gotten the aura’s but what my signals are is I pee alot before I get one and my mind gets wirly.   Welcome to the group and you are not alone when you are here.. Ronnie Thankyou for your response. I will definetly check into that. I do still have the paralysis about 2-3 times per week. My 8 year old daughter has been diagnosed with migraines. They are just normal? migraines where she gets nausea and then the pain. She has never had the aura’s before the HA starts, atleast not that we know of. She only gets them about once every couple of months, and her HA’s are manageable with preventative treatment. Nobody else in my family had ever had migraines before me, but a couple of  them has popped up saying that they think the HA’s they had all their life must have been migraines. I highly doubt that, Just because from my own experience, if you have a migraine…. YOU KNOW IT, AND NEVER FORGET IT!!!!! My dad was adopted, so we don’t know any medical history about his side of the family. There were times I think it would be so nice to know. I did not put this in my original post, but with my last pregnancy, I was hospitalized (not just the ER) 7 times JUST to try to get the pain under control! It was terrible. Anyway, thanks again. I will check into the magnesium and the CoQ10. Lisa K. Hi. My name is Lisa. I have read messages on this board for some tme now, and thought maybe it was time for me to join in. Maybe you could give me some advice or atleast support. I am 28 years old, and have migraines since I was 14. By my mid teens, the migraines seemed to me triggered hormonally. I usually would get them only if I was pregnant or on birth control pills. There were those few exceptions, but very rare. I mean maybe 2 per year. I had a daughter in August 2002 and had migraines through the whole pregnancy – as usual. I would normally get 5-6 a month, and sometimes more. But this time they were different. I had 2 what they call "complicated migraines". It freaked me out. I could not talk, I could not move my right side, and I was completely blind. The doctors told me not to worry as long as things were back to normal within 2-3 hours, which they were. So I ended up getting induced early with her, so that the headaches would go away faster, and after she was born, they did not go away. I mean they were not any worse, but they had always gone away before. Well to make sure we did not go through that again, I went to get my tubes tied, and found out in January of 2003 that I was pregnant again. This time, things took a turn for the worse. I had HA constantly and they were worse than before. I ended up taking pain meds 4-5 days per week and then I ended up changing over to narcotic injections because the pain pills were not working anymore. I ended up getting those 1-2 times per week. Then all of a sudden things got bad, and I mean REALLY bad. In May 2003, I got a compliacted migraine again. I was again unable to speak, (it was all jarbled like baby talk) I was completely blind, and I lost all movement of my right side. Since then things have never been the same. I have not been HA free since then. I have HA 24 hours a day, 7 days a week. I get all the migraine symptoms like the auras, the nausea, etc. atleast 4 times a day. I have been told by 4 neuro that I can not take any triptan or ergot drugs because of the complicated migraines which I get 2-3 times a week still. I had tried imitrex before the complicated ones, which made me feel like my head was exploding of my shoulders. I tried cafergot previously, and it did nothing. I have tried verapamil, propanolol, depacote, butalbital, topomax, and a few others I can not remember. Nothing has ever worked. I heard the whole "it is probably a rebound HA", so I went off of all meds that I was taking (approx 250 pain pills per month and 4 narcotic injections per week (yes 4 per week!!) and needless to say, I wanted to die!!!!! But atleast I can say that I tried to make sure it was not that. I wish it was, then they would be gone! They have done 3 MRI’s and they are all within normal limits. So now I am taking 50mg of Elavil at night, 45mg of long acting Morphine twice a day, and other pain pills for break through pain. I also still get 1-2 injections per week. I am not asking for a cure. I have figured out by now, that there probably is not one. But if you guys are open to sharing some support, it would be greatly appreciated!! I have tried 2nd, 3rd, 4th opinions, and more. They have all said that what I am doing right now is the best thing. I am still not HA free, even with all the meds I am on, but atleast I can somewhat function!! I have a wonderful husband that I have been married to for 10 years, and I have 5 children that I miss taking appropriate care of. If you guys have any ideas, I am surely open to them. I did go to a HA clinic, but they said I was ot a good candidate, and I went to a pain clinic, and they said they do not deal woth HA’s. So here I am, hoping to hear that I am not alone!! Hope someone was willing to take they time to read my story and maybe wants to be a cyber-friend! Sincerly; Lisa K. A couple of questions:  Are your still having one-sided paralysis with the headaches?  Does anyone in your family have similar headaches? It sounds a bit like hemiplegic migraine, which often responds to verapamil at sufficient dosage.  Theoretically, addition of magnesium and CoQ10 could help the effect of the verapamil, but I know of no studies to bear that out.

Response:

Hi Michelle;     Thanks for your response, and your kind words. I live in Portland, Oregon. I am lucky enough to be able to stay at home with my kids. Although half the time, I feel like they are taking more care of me, than me taking care of them. I feel like I have missed out on so much of my youngest two childrens lives already. So many times, my husband, mother, mother in law, or whoever was up helping me at the time, would say, "Oh Lisa, guess what one of the kids did today"? It makes me so angry. Not at them, but at myself, and at the HA’s. It took me a long time to understand that none of this was my fault. I thought if I blamed myself, and made it my fault, that I could change it as well. Unfortuantely, that was not the case! Just gotta live and learn. Or in my case, and so many of you guys….Learn to live! Anyway, we have excellent health insurance, but it is a plan that we have to see doctors that contract with. At this point though, we have figured that it really does not matter. If we can find a doctor that can actually help, we will pay for it ourself. Small price to pay for freedom. I say that because I feel like a prisoner that can not get the guard to open the door and let you out of this place! I wish there was a easy solution. I know we all do. I saw a doctor last week for another opinion. Alot of the nurses that I have seen thought he would have some magic cure, and boy was I hoping they were right! All he said was, "well, keep doing what you are doing". He said he thought my body was kind of shocked by another pregnancy so quickly, and that it just went into this rut and could not get back out. And that it is his job to figure out how to get me out of it. I liked him, He was nice, and QUIET!! I hate when nurses, doctors, etc. come in to see you and talk loud, or better yet, when they walk in and the light is off, and they turn it on so they can talk to you. I guess most doctors can not open their mouth in the dark?? Anyway. Thanks again for your support!! Please know that you are all in my thoughts. And thanks to everyone that has put me in theirs!! Lisa K.

– Hide quoted text — Show quoted text – Lisa, you poor thing.  You are way too young to already be struggling this much…not that any age is really worthy of that great award, but it sounds like you have been through a lot.  I didn’t have children, several miscarriages and ectopics, but I know my hormonal migraines got worse as time went on and each of those pregnancies seemed to have brought worse migraines. Your migraines sound so much more complicated than mine, although I do have a daily migraine that I treat.  I’ve never found a preventive that worked and it’s been hard.  However, I have gotten my seriously bad ones under control with a continuous birth control pill, Yasmin, that I take two times a day.  They found that it was the only bcp I can take, but I have to have two doses of it.  Strange, but true.  I see a specialist and it took me a long time to find her.  I would suspect you might have to do a lot of searching to find a good doctor willing to actually go through this with you…I know that is hard to do…been there.  There are also good pain management doctors out there who do treat migraines, and somewhat effectively. Can you share with the group where you live so maybe some people who are in the area can offer some ideas?  Also, are you a stay at home mom, or do you work?  Do you have health insurance that helps you out or are you fairly limited by your insurance when it comes to selection of doctors? Just some questions I thought I would ask…maybe we can throw around some ideas for you.  We welcome you, but are so sad that you’re in pain and have to join us under these conditions. We’d love to be your "pals." Michelle

Response:

Welcome aboard Lisa ;o) I’m fairly new here myself, and I must say these are some of the best guys, and gals that I have ever asociated with. They have made me feel very welcome, and have help me beyond all expectations. Hang in there because you are NOT alone….. most if not all of us literally feel your pain daily, but each of cling to the belief that better days are ahead. If we did not, they would have buried us all, long ago. Hugz, Kevin

Response:

– Hide quoted text — Show quoted text – Thankyou for your response. I will definetly check into that. I do still have the paralysis about 2-3 times per week. My 8 year old daughter has been diagnosed with migraines. They are just normal? migraines where she gets nausea and then the pain. She has never had the aura’s before the HA starts, atleast not that we know of. She only gets them about once every couple of months, and her HA’s are manageable with preventative treatment. Nobody else in my family had ever had migraines before me, but a couple of  them has popped up saying that they think the HA’s they had all their life must have been migraines. I highly doubt that, Just because from my own experience, if you have a migraine…. YOU KNOW IT, AND NEVER FORGET IT!!!!!

I was surprised at the number of people coming in for headache medication trials who said "I don’t have migraine," yet when we got a good history they clearly did have migraine.  Some are lucky enough to get off with a moderate intensity HA lasting perhaps six hours.  Some even get fairly good relief from Goody’s Powder or Excedrin.  I’ve seen others who had three-day headaches that really laid them out three or four times a month.  They knew they were having migraine by the time we saw them.  There is a wider range of intensity and duration than one might think. – Hide quoted text — Show quoted text – My dad was adopted, so we don’t know any medical history about his side of the family. There were times I think it would be so nice to know. I did not put this in my original post, but with my last pregnancy, I was hospitalized (not just the ER) 7 times JUST to try to get the pain under control! It was terrible. Anyway, thanks again. I will check into the magnesium and the CoQ10. Lisa K. Hi. My name is Lisa. I have read messages on this board for some tme now, and thought maybe it was time for me to join in. Maybe you could give me some advice or atleast support. I am 28 years old, and have migraines since I was 14. By my mid teens, the migraines seemed to me triggered hormonally. I usually would get them only if I was pregnant or on birth control pills. There were those few exceptions, but very rare. I mean maybe 2 per year. I had a daughter in August 2002 and had migraines through the whole pregnancy – as usual. I would normally get 5-6 a month, and sometimes more. But this time they were different. I had 2 what they call "complicated migraines". It freaked me out. I could not talk, I could not move my right side, and I was completely blind. The doctors told me not to worry as long as things were back to normal within 2-3 hours, which they were. So I ended up getting induced early with her, so that the headaches would go away faster, and after she was born, they did not go away. I mean they were not any worse, but they had always gone away before. Well to make sure we did not go through that again, I went to get my tubes tied, and found out in January of 2003 that I was pregnant again. This time, things took a turn for the worse. I had HA constantly and they were worse than before. I ended up taking pain meds 4-5 days per week and then I ended up changing over to narcotic injections because the pain pills were not working anymore. I ended up getting those 1-2 times per week. Then all of a sudden things got bad, and I mean REALLY bad. In May 2003, I got a compliacted migraine again. I was again unable to speak, (it was all jarbled like baby talk) I was completely blind, and I lost all movement of my right side. Since then things have never been the same. I have not been HA free since then. I have HA 24 hours a day, 7 days a week. I get all the migraine symptoms like the auras, the nausea, etc. atleast 4 times a day. I have been told by 4 neuro that I can not take any triptan or ergot drugs because of the complicated migraines which I get 2-3 times a week still. I had tried imitrex before the complicated ones, which made me feel like my head was exploding of my shoulders. I tried cafergot previously, and it did nothing. I have tried verapamil, propanolol, depacote, butalbital, topomax, and a few others I can not remember. Nothing has ever worked. I heard the whole "it is probably a rebound HA", so I went off of all meds that I was taking (approx 250 pain pills per month and 4 narcotic injections per week (yes 4 per week!!) and needless to say, I wanted to die!!!!! But atleast I can say that I tried to make sure it was not that. I wish it was, then they would be gone! They have done 3 MRI’s and they are all within normal limits. So now I am taking 50mg of Elavil at night, 45mg of long acting Morphine twice a day, and other pain pills for break through pain. I also still get 1-2 injections per week. I am not asking for a cure. I have figured out by now, that there probably is not one. But if you guys are open to sharing some support, it would be greatly appreciated!! I have tried 2nd, 3rd, 4th opinions, and more. They have all said that what I am doing right now is the best thing. I am still not HA free, even with all the meds I am on, but atleast I can somewhat function!! I have a wonderful husband that I have been married to for 10 years, and I have 5 children that I miss taking appropriate care of. If you guys have any ideas, I am surely open to them. I did go to a HA clinic, but they said I was ot a good candidate, and I went to a pain clinic, and they said they do not deal woth HA’s. So here I am, hoping to hear that I am not alone!! Hope someone was willing to take they time to read my story and maybe wants to be a cyber-friend! Sincerly; Lisa K. A couple of questions:  Are your still having one-sided paralysis with the headaches?  Does anyone in your family have similar headaches? It sounds a bit like hemiplegic migraine, which often responds to verapamil at sufficient dosage.  Theoretically, addition of magnesium and CoQ10 could help the effect of the verapamil, but I know of no studies to bear that out.

Response:

Hi. My name is Lisa. I have read messages on this board for some tme now, and thought maybe it was time for me to join in. Maybe you could give me some advice or atleast support. I am 28 years old, and have migraines since I was 14. By my mid teens, the migraines seemed to me triggered hormonally. I usually would get them only if I was pregnant or on birth control pills. There were those few exceptions, but very rare. I mean maybe 2 per year. I had a daughter in August 2002 and had migraines through the whole pregnancy – as usual. I would normally get 5-6 a month, and sometimes more. But this time they were different. I had 2 what they call "complicated migraines". It freaked me out. I could not talk, I could not move my right side, and I was completely blind. The doctors told me not to worry as long as things were back to normal within 2-3 hours, which they were. So I ended up getting induced early with her, so that the headaches would go away faster, and after she was born, they did not go away. I mean they were not any worse, but they had always gone away before. Well to make sure we did not go through that again, I went to get my tubes tied, and found out in January of 2003 that I was pregnant again. This time, things took a turn for the worse. I had HA constantly and they were worse than before. I ended up taking pain meds 4-5 days per week and then I ended up changing over to narcotic injections because the pain pills were not working anymore. I ended up getting those 1-2 times per week. Then all of a sudden things got bad, and I mean REALLY bad. In May 2003, I got a compliacted migraine again. I was again unable to speak, (it was all jarbled like baby talk) I was completely blind, and I lost all movement of my right side. Since then things have never been the same. I have not been HA free since then. I have HA 24 hours a day, 7 days a week. I get all the migraine symptoms like the auras, the nausea, etc. atleast 4 times a day. I have been told by 4 neuro that I can not take any triptan or ergot drugs because of the complicated migraines which I get 2-3 times a week still. I had tried imitrex before the complicated ones, which made me feel like my head was exploding of my shoulders. I tried cafergot previously, and it did nothing. I have tried verapamil, propanolol, depacote, butalbital, topomax, and a few others I can not remember. Nothing has ever worked. I heard the whole "it is probably a rebound HA", so I went off of all meds that I was taking (approx 250 pain pills per month and 4 narcotic injections per week (yes 4 per week!!) and needless to say, I wanted to die!!!!! But atleast I can say that I tried to make sure it was not that. I wish it was, then they would be gone! They have done 3 MRI’s and they are all within normal limits. So now I am taking 50mg of Elavil at night, 45mg of long acting Morphine twice a day, and other pain pills for break through pain. I also still get 1-2 injections per week. I am not asking for a cure. I have figured out by now, that there probably is not one. But if you guys are open to sharing some support, it would be greatly appreciated!! I have tried 2nd, 3rd, 4th opinions, and more. They have all said that what I am doing right now is the best thing. I am still not HA free, even with all the meds I am on, but atleast I can somewhat function!! I have a wonderful husband that I have been married to for 10 years, and I have 5 children that I miss taking appropriate care of. If you guys have any ideas, I am surely open to them. I did go to a HA clinic, but they said I was ot a good candidate, and I went to a pain clinic, and they said they do not deal woth HA’s. So here I am, hoping to hear that I am not alone!! Hope someone was willing to take they time to read my story and maybe wants to be a cyber-friend! Sincerly; Lisa K.

Response:

– Hide quoted text — Show quoted text – Hi. My name is Lisa. I have read messages on this board for some tme now, and thought maybe it was time for me to join in. Maybe you could give me some advice or atleast support. I am 28 years old, and have migraines since I was 14. By my mid teens, the migraines seemed to me triggered hormonally. I usually would get them only if I was pregnant or on birth control pills. There were those few exceptions, but very rare. I mean maybe 2 per year. I had a daughter in August 2002 and had migraines through the whole pregnancy – as usual. I would normally get 5-6 a month, and sometimes more. But this time they were different. I had 2 what they call "complicated migraines". It freaked me out. I could not talk, I could not move my right side, and I was completely blind. The doctors told me not to worry as long as things were back to normal within 2-3 hours, which they were. So I ended up getting induced early with her, so that the headaches would go away faster, and after she was born, they did not go away. I mean they were not any worse, but they had always gone away before. Well to make sure we did not go through that again, I went to get my tubes tied, and found out in January of 2003 that I was pregnant again. This time, things took a turn for the worse. I had HA constantly and they were worse than before. I ended up taking pain meds 4-5 days per week and then I ended up changing over to narcotic injections because the pain pills were not working anymore. I ended up getting those 1-2 times per week. Then all of a sudden things got bad, and I mean REALLY bad. In May 2003, I got a compliacted migraine again. I was again unable to speak, (it was all jarbled like baby talk) I was completely blind, and I lost all movement of my right side. Since then things have never been the same. I have not been HA free since then. I have HA 24 hours a day, 7 days a week. I get all the migraine symptoms like the auras, the nausea, etc. atleast 4 times a day. I have been told by 4 neuro that I can not take any triptan or ergot drugs because of the complicated migraines which I get 2-3 times a week still. I had tried imitrex before the complicated ones, which made me feel like my head was exploding of my shoulders. I tried cafergot previously, and it did nothing. I have tried verapamil, propanolol, depacote, butalbital, topomax, and a few others I can not remember. Nothing has ever worked. I heard the whole "it is probably a rebound HA", so I went off of all meds that I was taking (approx 250 pain pills per month and 4 narcotic injections per week (yes 4 per week!!) and needless to say, I wanted to die!!!!! But atleast I can say that I tried to make sure it was not that. I wish it was, then they would be gone! They have done 3 MRI’s and they are all within normal limits. So now I am taking 50mg of Elavil at night, 45mg of long acting Morphine twice a day, and other pain pills for break through pain. I also still get 1-2 injections per week. I am not asking for a cure. I have figured out by now, that there probably is not one. But if you guys are open to sharing some support, it would be greatly appreciated!! I have tried 2nd, 3rd, 4th opinions, and more. They have all said that what I am doing right now is the best thing. I am still not HA free, even with all the meds I am on, but atleast I can somewhat function!! I have a wonderful husband that I have been married to for 10 years, and I have 5 children that I miss taking appropriate care of. If you guys have any ideas, I am surely open to them. I did go to a HA clinic, but they said I was ot a good candidate, and I went to a pain clinic, and they said they do not deal woth HA’s. So here I am, hoping to hear that I am not alone!! Hope someone was willing to take they time to read my story and maybe wants to be a cyber-friend! Sincerly; Lisa K.

Hi Lisa, your migraines sound similar to mine except I don’t get the headache (for which I am *very* grateful but I get abdominal pain instead). The diagnosis I have is complicated migraine/Basilar Artery Migraine and Triptans are an absolute no, no because of the risk of depriving the brain of oxygen and causing permanent damage. The aura/prodrome part can be really scary. I know some of the things which cause my migraine, alcohol, bananas, cauliflower, msg, pork, low blood glucose, periods/hormone fluctuations…etc., and avoided them but I still had 2 migraines a month. Pizotifen (a preventative medication) seems to work for me, I’ve been migraine free since starting it in February. {{{{{Lisa}}}}} — Shirley http://community.webshots.com/user/shirleycatuk

Response:

– Hide quoted text — Show quoted text – Hi Shirley;    Well, I know what I will be trying this week. Can you tell me if Pizotifen is a prescription, or an OTC. (herbal??) I will certainly try anything at this point. I am sorry for everything you have gone through. How did you find out all those triggers? Scary is an understatement for the aura part of things. The first time I had it, I thought for sure that I was havng a stroke and I was goiing to die. And I can say that freaking out and being stressed certainly does NOT help HA’s!! Hugs back to you. Thanks for the info. Lisa {{{{{{{shirley}}}}}}}

Hi Lisa, Pizotifen (generic name) is prescription only in the uk, I don’t know if that’s the case where you live. I found the triggers by accident (I didn’t know the *episodes* I was having were migraine) I thought I had food intolerance or something (given a diagnosis of IBS when the episodes first started). I faint along with all the difficulty speaking/breathing, going blind etc. and many a time I wished I would just die quickly so it would all stop, it took me a while to figure out that in an hour or so the nasty stuff would be over and I’d fall into an exhausted sleep. Good luck with finding a medication that works for you — Shirley http://community.webshots.com/user/shirleycatuk

Response:

Lisa, can’t remember from your earlier post, cut have you been through all the antiseizure medications already…Topomax, Zonegran, Gabitril, etc? Michelle

– Hide quoted text — Show quoted text – Thanks Dana for your kind words. I think that the "COMPLICATED" migraine stuff is exactly why I have gotten so many different opinions. I have been worried about the same exact hting. They said that strokes cause permanent side effects, and since mine are not permanent, that measns they are not. I do not really think that is so. I have heard of people having mini-strokes and they are not permanently disabled (for lack of better words). I have almost hoped for some time that they were strokes. I know that sounds terrible, but right now, I would not care what they found as long as they could find a reason. I am so tired of hearing the "oh we don’t know why you have so much pain, that you want to kill your self, but you will be just fine, here, take some more pain pills!!!" I just want them to find out why. I have never understood why people can have head  aches this bad, and it be NO BIG DEAL!! Maybe doctors don’t think so, but I am hear to tell all of I am a lousy wife, a lousy mother, a lousy daughter, a lousy sister, and a lousy friend! I just want people to leave me alone, because when they talk, it hurts. The other day we were wtching a movie, and my husband laughed. I wanted to kill him. That is ridiculous! And God forbid anybody cough around me! I mean this is a really lousy way to live a life. Although I don’t even live life anymore. I call it survival mode. I just survice. I have days that I wake up ready to start another day, and I have days that I wish I never woke up again! Sorry for the babble. I am not having a great day,and I really want to hibernate for a while. Again thanks for your kind words Dana. Hope all of you are doing good today.   Hugs right back to you… Lisa K. Hope someone was willing to take they time to read my story and maybe wants to be a cyber-friend! Holy COW Lisa, I don’t even know what to say. You have definitely been through the ringer. Ringers. More than once. Support? You’ve come to the right place. Wow. The first thing I want to say is are your doctors *sure* this is migraine? I know you’ve had second/third/fourth opinions, but the "complicated" migraines (a term I’ve never heard of, but that doesn’t mean anything) sound more like strokes to me. I’m glad you found us, but I’m so sorry you had to. <<<<<<<<<<<<<<<<<<Lisa (That’s a very big hug from me) Dana

Response:

Hi Shirley;     Well, I know what I will be trying this week. Can you tell me if Pizotifen is a prescription, or an OTC. (herbal??) I will certainly try anything at this point. I am sorry for everything you have gone through. How did you find out all those triggers? Scary is an understatement for the aura part of things. The first time I had it, I thought for sure that I was havng a stroke and I was goiing to die. And I can say that freaking out and being stressed certainly does NOT help HA’s!! Hugs back to you. Thanks for the info. Lisa {{{{{{{shirley}}}}}}}

– Hide quoted text — Show quoted text – Hi Lisa, your migraines sound similar to mine except I don’t get the headache (for which I am *very* grateful but I get abdominal pain instead). The diagnosis I have is complicated migraine/Basilar Artery Migraine and Triptans are an absolute no, no because of the risk of depriving the brain of oxygen and causing permanent damage. The aura/prodrome part can be really scary. I know some of the things which cause my migraine, alcohol, bananas, cauliflower, msg, pork, low blood glucose, periods/hormone fluctuations…etc., and avoided them but I still had 2 migraines a month. Pizotifen (a preventative medication) seems to work for me, I’ve been migraine free since starting it in February. {{{{{Lisa}}}}} — Shirley http://community.webshots.com/user/shirleycatuk

Response:

Hi Lisa!  You didn’t have to ask, you’re already one of us! Welcome and I hope you stick around, hang out, and share. :-) (((((Lisa))))) Hugs, ~Sage

– Hide quoted text — Show quoted text – Hi. My name is Lisa. I have read messages on this board for some tme now, and thought maybe it was time for me to join in. Maybe you could give me some advice or atleast support. I am 28 years old, and have migraines since I was 14. By my mid teens, the migraines seemed to me triggered hormonally. I usually would get them only if I was pregnant or on birth control pills. There were those few exceptions, but very rare. I mean maybe 2 per year. I had a daughter in August 2002 and had migraines through the whole pregnancy – as usual. I would normally get 5-6 a month, and sometimes more. But this time they were different. I had 2 what they call "complicated migraines". It freaked me out. I could not talk, I could not move my right side, and I was completely blind. The doctors told me not to worry as long as things were back to normal within 2-3 hours, which they were. So I ended up getting induced early with her, so that the headaches would go away faster, and after she was born, they did not go away. I mean they were not any worse, but they had always gone away before. Well to make sure we did not go through that again, I went to get my tubes tied, and found out in January of 2003 that I was pregnant again. This time, things took a turn for the worse. I had HA constantly and they were worse than before. I ended up taking pain meds 4-5 days per week and then I ended up changing over to narcotic injections because the pain pills were not working anymore. I ended up getting those 1-2 times per week. Then all of a sudden things got bad, and I mean REALLY bad. In May 2003, I got a compliacted migraine again. I was again unable to speak, (it was all jarbled like baby talk) I was completely blind, and I lost all movement of my right side. Since then things have never been the same. I have not been HA free since then. I have HA 24 hours a day, 7 days a week. I get all the migraine symptoms like the auras, the nausea, etc. atleast 4 times a day. I have been told by 4 neuro that I can not take any triptan or ergot drugs because of the complicated migraines which I get 2-3 times a week still. I had tried imitrex before the complicated ones, which made me feel like my head was exploding of my shoulders. I tried cafergot previously, and it did nothing. I have tried verapamil, propanolol, depacote, butalbital, topomax, and a few others I can not remember. Nothing has ever worked. I heard the whole "it is probably a rebound HA", so I went off of all meds that I was taking (approx 250 pain pills per month and 4 narcotic injections per week (yes 4 per week!!) and needless to say, I wanted to die!!!!! But atleast I can say that I tried to make sure it was not that. I wish it was, then they would be gone! They have done 3 MRI’s and they are all within normal limits. So now I am taking 50mg of Elavil at night, 45mg of long acting Morphine twice a day, and other pain pills for break through pain. I also still get 1-2 injections per week. I am not asking for a cure. I have figured out by now, that there probably is not one. But if you guys are open to sharing some support, it would be greatly appreciated!! I have tried 2nd, 3rd, 4th opinions, and more. They have all said that what I am doing right now is the best thing. I am still not HA free, even with all the meds I am on, but atleast I can somewhat function!! I have a wonderful husband that I have been married to for 10 years, and I have 5 children that I miss taking appropriate care of. If you guys have any ideas, I am surely open to them. I did go to a HA clinic, but they said I was ot a good candidate, and I went to a pain clinic, and they said they do not deal woth HA’s. So here I am, hoping to hear that I am not alone!! Hope someone was willing to take they time to read my story and maybe wants to be a cyber-friend! Sincerly; Lisa K.

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Response:

Hi Lisa.. I’m late in my welcome but it’s just as hearty!!!  I’ve been reading your previous notes and hope that you’ve gotten some relief by now. Liz

– Hide quoted text — Show quoted text – Hi Lisa!  You didn’t have to ask, you’re already one of us! Welcome and I hope you stick around, hang out, and share. :-) (((((Lisa))))) Hugs, ~Sage Hi. My name is Lisa. I have read messages on this board for some tme now, and thought maybe it was time for me to join in. Maybe you could give me some advice or atleast support. I am 28 years old, and have migraines since I was 14. By my mid teens, the migraines seemed to me triggered hormonally. I usually would get them only if I was pregnant or on birth control pills. There were those few exceptions, but very rare. I mean maybe 2 per year. I had a daughter in August 2002 and had migraines through the whole pregnancy – as usual. I would normally get 5-6 a month, and sometimes more. But this time they were different. I had 2 what they call "complicated migraines". It freaked me out. I could not talk, I could not move my right side, and I was completely blind. The doctors told me not to worry as long as things were back to normal within 2-3 hours, which they were. So I ended up getting induced early with her, so that the headaches would go away faster, and after she was born, they did not go away. I mean they were not any worse, but they had always gone away before. Well to make sure we did not go through that again, I went to get my tubes tied, and found out in January of 2003 that I was pregnant again. This time, things took a turn for the worse. I had HA constantly and they were worse than before. I ended up taking pain meds 4-5 days per week and then I ended up changing over to narcotic injections because the pain pills were not working anymore. I ended up getting those 1-2 times per week. Then all of a sudden things got bad, and I mean REALLY bad. In May 2003, I got a compliacted migraine again. I was again unable to speak, (it was all jarbled like baby talk) I was completely blind, and I lost all movement of my right side. Since then things have never been the same. I have not been HA free since then. I have HA 24 hours a day, 7 days a week. I get all the migraine symptoms like the auras, the nausea, etc. atleast 4 times a day. I have been told by 4 neuro that I can not take any triptan or ergot drugs because of the complicated migraines which I get 2-3 times a week still. I had tried imitrex before the complicated ones, which made me feel like my head was exploding of my shoulders. I tried cafergot previously, and it did nothing. I have tried verapamil, propanolol, depacote, butalbital, topomax, and a few others I can not remember. Nothing has ever worked. I heard the whole "it is probably a rebound HA", so I went off of all meds that I was taking (approx 250 pain pills per month and 4 narcotic injections per week (yes 4 per week!!) and needless to say, I wanted to die!!!!! But atleast I can say that I tried to make sure it was not that. I wish it was, then they would be gone! They have done 3 MRI’s and they are all within normal limits. So now I am taking 50mg of Elavil at night, 45mg of long acting Morphine twice a day, and other pain pills for break through pain. I also still get 1-2 injections per week. I am not asking for a cure. I have figured out by now, that there probably is not one. But if you guys are open to sharing some support, it would be greatly appreciated!! I have tried 2nd, 3rd, 4th opinions, and more. They have all said that what I am doing right now is the best thing. I am still not HA free, even with all the meds I am on, but atleast I can somewhat function!! I have a wonderful husband that I have been married to for 10 years, and I have 5 children that I miss taking appropriate care of. If you guys have any ideas, I am surely open to them. I did go to a HA clinic, but they said I was ot a good candidate, and I went to a pain clinic, and they said they do not deal woth HA’s. So here I am, hoping to hear that I am not alone!! Hope someone was willing to take they time to read my story and maybe wants to be a cyber-friend! Sincerly; Lisa K. —-== Posted via Newsfeeds.Com – Unlimited-Uncensored-Secure Usenet News==—- http://www.newsfeeds.com The #1 Newsgroup Service in the World! 120,000+ Newsgroups —-= East and West-Coast Server Farms – Total Privacy via Encryption =—-

Response:

Thanks Dana for your kind words. I think that the "COMPLICATED" migraine stuff is exactly why I have gotten so many different opinions.

Oh yeah, Lisa, I did forget to mention that I am getting GREAT results right now with magnesium. <sshhhhh…don’t tell anyone or it will quit working… I started taking it about a month ago, 350 milligrams a day and last week I actually had 6 days in a row of working all day in the yard (well, I use the word yard loosely, it’s 10 acres of lawn, trees, orchard, garden beds etc.) and then several hours of computer work at night without crashing the next day. Smallish headaches that were easy to deal with, one major headbanger during that time. It’s been *years* since I’ve been able to pull that off. This recent heat wave is proving more difficult to deal with, but today is cooler and so I’ll be better, I hope. I’m also staying up on all of my other preventatives. Topamax, Doxepin, Flexaril, Clonazepam, Progesterone cream, um, I think that’s it. Helen and Kadee are also on CoQ10 with the magnesium and are having good results with it, I’m going to start that as soon as my cash flow situation straightens out. (Hubby is just now back to work after being unemployed since February.) Dana

Response:

Thanks Dana for your kind words. I think that the "COMPLICATED" migraine stuff is exactly why I have gotten so many different opinions. I have been worried about the same exact hting. They said that strokes cause permanent side effects, and since mine are not permanent, that measns they are not. I do not really think that is so. I have heard of people having mini-strokes and they are not permanently disabled (for lack of better words). I have almost hoped for some time that they were strokes. I know that sounds terrible, but right now, I would not care what they found as long as they could find a reason. I am so tired of hearing the "oh we don’t know why you have so much pain, that you want to kill your self, but you will be just fine, here, take some more pain pills!!!" I just want them to find out why. I have never understood why people can have head  aches this bad, and it be NO BIG DEAL!! Maybe doctors don’t think so, but I am hear to tell all of am a lousy wife, a lousy mother, a lousy daughter, a lousy sister, and a lousy friend! I just want people to leave me alone, because when they talk, it hurts. The other day we were wtching a movie, and my husband laughed. I wanted to kill him. That is ridiculous! And God forbid anybody cough around me! I mean this is a really lousy way to live a life. Although I don’t even live life anymore. I call it survival mode. I just survice. I have days that I wake up ready to start another day, and I have days that I wish I never woke up again! Sorry for the babble. I am not having a great day,and I really want to hibernate for a while. Again thanks for your kind words Dana. Hope all of you are doing good today.   Hugs right back to you… Lisa K.

– Hide quoted text — Show quoted text – Hope someone was willing to take they time to read my story and maybe wants to be a cyber-friend! Holy COW Lisa, I don’t even know what to say. You have definitely been through the ringer. Ringers. More than once. Support? You’ve come to the right place. Wow. The first thing I want to say is are your doctors *sure* this is migraine? I know you’ve had second/third/fourth opinions, but the "complicated" migraines (a term I’ve never heard of, but that doesn’t mean anything) sound more like strokes to me. I’m glad you found us, but I’m so sorry you had to. <<<<<<<<<<<<<<<<<<Lisa (That’s a very big hug from me) Dana

Response:

Hope someone was willing to take they time to read my story and maybe wants to be a cyber-friend!

Holy COW Lisa, I don’t even know what to say. You have definitely been through the ringer. Ringers. More than once. Support? You’ve come to the right place. Wow. The first thing I want to say is are your doctors *sure* this is migraine? I know you’ve had second/third/fourth opinions, but the "complicated" migraines (a term I’ve never heard of, but that doesn’t mean anything) sound more like strokes to me. I’m glad you found us, but I’m so sorry you had to. <<<<<<<<<<<<<<<<<<Lisa (That’s a very big hug from me) Dana

Response:

– Hide quoted text — Show quoted text – Hi. My name is Lisa. I have read messages on this board for some tme now, and thought maybe it was time for me to join in. Maybe you could give me some advice or atleast support. I am 28 years old, and have migraines since I was 14. By my mid teens, the migraines seemed to me triggered hormonally. I usually would get them only if I was pregnant or on birth control pills. There were those few exceptions, but very rare. I mean maybe 2 per year. I had a daughter in August 2002 and had migraines through the whole pregnancy – as usual. I would normally get 5-6 a month, and sometimes more. But this time they were different. I had 2 what they call "complicated migraines". It freaked me out. I could not talk, I could not move my right side, and I was completely blind. The doctors told me not to worry as long as things were back to normal within 2-3 hours, which they were. So I ended up getting induced early with her, so that the headaches would go away faster, and after she was born, they did not go away. I mean they were not any worse, but they had always gone away before. Well to make sure we did not go through that again, I went to get my tubes tied, and found out in January of 2003 that I was pregnant again. This time, things took a turn for the worse. I had HA constantly and they were worse than before. I ended up taking pain meds 4-5 days per week and then I ended up changing over to narcotic injections because the pain pills were not working anymore. I ended up getting those 1-2 times per week. Then all of a sudden things got bad, and I mean REALLY bad. In May 2003, I got a compliacted migraine again. I was again unable to speak, (it was all jarbled like baby talk) I was completely blind, and I lost all movement of my right side. Since then things have never been the same. I have not been HA free since then. I have HA 24 hours a day, 7 days a week. I get all the migraine symptoms like the auras, the nausea, etc. atleast 4 times a day. I have been told by 4 neuro that I can not take any triptan or ergot drugs because of the complicated migraines which I get 2-3 times a week still. I had tried imitrex before the complicated ones, which made me feel like my head was exploding of my shoulders. I tried cafergot previously, and it did nothing. I have tried verapamil, propanolol, depacote, butalbital, topomax, and a few others I can not remember. Nothing has ever worked. I heard the whole "it is probably a rebound HA", so I went off of all meds that I was taking (approx 250 pain pills per month and 4 narcotic injections per week (yes 4 per week!!) and needless to say, I wanted to die!!!!! But atleast I can say that I tried to make sure it was not that. I wish it was, then they would be gone! They have done 3 MRI’s and they are all within normal limits. So now I am taking 50mg of Elavil at night, 45mg of long acting Morphine twice a day, and other pain pills for break through pain. I also still get 1-2 injections per week. I am not asking for a cure. I have figured out by now, that there probably is not one. But if you guys are open to sharing some support, it would be greatly appreciated!! I have tried 2nd, 3rd, 4th opinions, and more. They have all said that what I am doing right now is the best thing. I am still not HA free, even with all the meds I am on, but atleast I can somewhat function!! I have a wonderful husband that I have been married to for 10 years, and I have 5 children that I miss taking appropriate care of. If you guys have any ideas, I am surely open to them. I did go to a HA clinic, but they said I was ot a good candidate, and I went to a pain clinic, and they said they do not deal woth HA’s. So here I am, hoping to hear that I am not alone!! Hope someone was willing to take they time to read my story and maybe wants to be a cyber-friend! Sincerly; Lisa K.

Wow lisa, sounds like you have been through a lot. There are many helpful people here, also good listeners when you need to vent. Hope you find something that works for you. I see many have already offered suggestions. Mine are not as severe as yours, so I am not the person to ask. But I will keep you in my thoughts and prayers for a solution. Glad you found us. Joy :o )

Response:

Thanks Dana for your kind words. I think that the "COMPLICATED" migraine stuff is exactly why I have gotten so many different opinions. I have been worried about the same exact hting. They said that strokes cause permanent side effects, and since mine are not permanent, that measns they are not. I do not really think that is so. I have heard of people having mini-strokes and they are not permanently disabled (for lack of better words)

Right, TIAs, or transient ischemic attacks. Which can be warnings of coming strokes. . I have almost hoped for some time that they were strokes. I know that sounds terrible, but right now, I would not care what they found as long as they could find a reason.

No, it doesn’t sound terrible. I’ve often thought "just *please* tell me I have a brain tumor and that you can either fix it or that I’m going to die. *Then* I could cope with living like this." I think we’ve all felt like that.  I am so tired of hearing the "oh we don’t know why you have so much pain, that you want to kill your self, but you will be just fine, here, take some more pain pills!!!"

ugh. I’m tired of hearing that too. "just pull a blanket up over your head." Pull a blanket up over your own head, doc. Live in my head for a few weeks and *then* be condescending. See how *you* cope with pain like this. I just want them to find out why. I have never understood why people can have head  aches this bad, and it be NO BIG DEAL!! Maybe doctors don’t think so, but I am hear to tell all of am a lousy wife, a lousy mother, a lousy daughter, a lousy sister, and a lousy friend!

I know. I’m sick of feeling like a *&$#)(! invalid.  I just want people to leave me alone, because when they talk, it hurts. The other day we were wtching a movie, and my husband laughed. I wanted to kill him. That is ridiculous! And God forbid anybody cough around me! I mean this is a really lousy way to live a life.

How about some earplugs? If the sharp, percussive noises hurt you, some foam earplugs you can get in drugstores might help. I’m *hooked* on my iPod. I have noised cancelling earphones and the shole world just goes away, all I head is the music. *My* music, that I’ve picked. Although I don’t even live life anymore. I call it survival mode. I just survice. I have days that I wake up ready to start another day, and I have days that I wish I never woke up again! Sorry for the babble.

It’s not babble, it’s venting, and we all do it. It’s what we’re here for.  I am not having a great day,and I really want to hibernate for a while. Again thanks for your kind words Dana. Hope all of you are doing good today.   Hugs right back to you…

Ah, thanks. Not a great day here either. Hot, humid, a thunderstorm out there somewhere that just won’t happen. rrrgh…. Dana

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Shirley, how did you avoid your periods? Just Kidding

– Hide quoted text — Show quoted text – Hi. My name is Lisa. I have read messages on this board for some tme now, and thought maybe it was time for me to join in. Maybe you could give me some advice or atleast support. I am 28 years old, and have migraines since I was 14. By my mid teens, the migraines seemed to me triggered hormonally. I usually would get them only if I was pregnant or on birth control pills. There were those few exceptions, but very rare. I mean maybe 2 per year. I had a daughter in August 2002 and had migraines through the whole pregnancy – as usual. I would normally get 5-6 a month, and sometimes more. But this time they were different. I had 2 what they call "complicated migraines". It freaked me out. I could not talk, I could not move my right side, and I was completely blind. The doctors told me not to worry as long as things were back to normal within 2-3 hours, which they were. So I ended up getting induced early with her, so that the headaches would go away faster, and after she was born, they did not go away. I mean they were not any worse, but they had always gone away before. Well to make sure we did not go through that again, I went to get my tubes tied, and found out in January of 2003 that I was pregnant again. This time, things took a turn for the worse. I had HA constantly and they were worse than before. I ended up taking pain meds 4-5 days per week and then I ended up changing over to narcotic injections because the pain pills were not working anymore. I ended up getting those 1-2 times per week. Then all of a sudden things got bad, and I mean REALLY bad. In May 2003, I got a compliacted migraine again. I was again unable to speak, (it was all jarbled like baby talk) I was completely blind, and I lost all movement of my right side. Since then things have never been the same. I have not been HA free since then. I have HA 24 hours a day, 7 days a week. I get all the migraine symptoms like the auras, the nausea, etc. atleast 4 times a day. I have been told by 4 neuro that I can not take any triptan or ergot drugs because of the complicated migraines which I get 2-3 times a week still. I had tried imitrex before the complicated ones, which made me feel like my head was exploding of my shoulders. I tried cafergot previously, and it did nothing. I have tried verapamil, propanolol, depacote, butalbital, topomax, and a few others I can not remember. Nothing has ever worked. I heard the whole "it is probably a rebound HA", so I went off of all meds that I was taking (approx 250 pain pills per month and 4 narcotic injections per week (yes 4 per week!!) and needless to say, I wanted to die!!!!! But atleast I can say that I tried to make sure it was not that. I wish it was, then they would be gone! They have done 3 MRI’s and they are all within normal limits. So now I am taking 50mg of Elavil at night, 45mg of long acting Morphine twice a day, and other pain pills for break through pain. I also still get 1-2 injections per week. I am not asking for a cure. I have figured out by now, that there probably is not one. But if you guys are open to sharing some support, it would be greatly appreciated!! I have tried 2nd, 3rd, 4th opinions, and more. They have all said that what I am doing right now is the best thing. I am still not HA free, even with all the meds I am on, but atleast I can somewhat function!! I have a wonderful husband that I have been married to for 10 years, and I have 5 children that I miss taking appropriate care of. If you guys have any ideas, I am surely open to them. I did go to a HA clinic, but they said I was ot a good candidate, and I went to a pain clinic, and they said they do not deal woth HA’s. So here I am, hoping to hear that I am not alone!! Hope someone was willing to take they time to read my story and maybe wants to be a cyber-friend! Sincerly; Lisa K. Hi Lisa, your migraines sound similar to mine except I don’t get the headache (for which I am *very* grateful but I get abdominal pain instead). The diagnosis I have is complicated migraine/Basilar Artery Migraine and Triptans are an absolute no, no because of the risk of depriving the brain of oxygen and causing permanent damage. The aura/prodrome part can be really scary. I know some of the things which cause my migraine, alcohol, bananas, cauliflower, msg, pork, low blood glucose, periods/hormone fluctuations…etc., and avoided them but I still had 2 migraines a month. Pizotifen (a preventative medication) seems to work for me, I’ve been migraine free since starting it in February. {{{{{Lisa}}}}} — Shirley http://community.webshots.com/user/shirleycatuk

Response:

Shirley, how did you avoid your periods? Just Kidding

Getting older has some advantages.  <eg — Shirley http://community.webshots.com/user/shirleycatuk

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Thankyou for your response. I will definetly check into that. I do still have the paralysis about 2-3 times per week. My 8 year old daughter has been diagnosed with migraines. They are just normal? migraines where she gets nausea and then the pain. She has never had the aura’s before the HA starts, atleast not that we know of. She only gets them about once every couple of months, and her HA’s are manageable with preventative treatment. Nobody else in my family had ever had migraines before me, but a couple of  them has popped up saying that they think the HA’s they had all their life must have been migraines. I highly doubt that, Just because from my own experience, if you have a migraine…. YOU KNOW IT, AND NEVER FORGET IT!!!!! My dad was adopted, so we don’t know any medical history about his side of the family. There were times I think it would be so nice to know. I did not put this in my original post, but with my last pregnancy, I was hospitalized (not just the ER) 7 times JUST to try to get the pain under control! It was terrible. Anyway, thanks again. I will check into the magnesium and the CoQ10. Lisa K.

– Hide quoted text — Show quoted text – Hi. My name is Lisa. I have read messages on this board for some tme now, and thought maybe it was time for me to join in. Maybe you could give me some advice or atleast support. I am 28 years old, and have migraines since I was 14. By my mid teens, the migraines seemed to me triggered hormonally. I usually would get them only if I was pregnant or on birth control pills. There were those few exceptions, but very rare. I mean maybe 2 per year. I had a daughter in August 2002 and had migraines through the whole pregnancy – as usual. I would normally get 5-6 a month, and sometimes more. But this time they were different. I had 2 what they call "complicated migraines". It freaked me out. I could not talk, I could not move my right side, and I was completely blind. The doctors told me not to worry as long as things were back to normal within 2-3 hours, which they were. So I ended up getting induced early with her, so that the headaches would go away faster, and after she was born, they did not go away. I mean they were not any worse, but they had always gone away before. Well to make sure we did not go through that again, I went to get my tubes tied, and found out in January of 2003 that I was pregnant again. This time, things took a turn for the worse. I had HA constantly and they were worse than before. I ended up taking pain meds 4-5 days per week and then I ended up changing over to narcotic injections because the pain pills were not working anymore. I ended up getting those 1-2 times per week. Then all of a sudden things got bad, and I mean REALLY bad. In May 2003, I got a compliacted migraine again. I was again unable to speak, (it was all jarbled like baby talk) I was completely blind, and I lost all movement of my right side. Since then things have never been the same. I have not been HA free since then. I have HA 24 hours a day, 7 days a week. I get all the migraine symptoms like the auras, the nausea, etc. atleast 4 times a day. I have been told by 4 neuro that I can not take any triptan or ergot drugs because of the complicated migraines which I get 2-3 times a week still. I had tried imitrex before the complicated ones, which made me feel like my head was exploding of my shoulders. I tried cafergot previously, and it did nothing. I have tried verapamil, propanolol, depacote, butalbital, topomax, and a few others I can not remember. Nothing has ever worked. I heard the whole "it is probably a rebound HA", so I went off of all meds that I was taking (approx 250 pain pills per month and 4 narcotic injections per week (yes 4 per week!!) and needless to say, I wanted to die!!!!! But atleast I can say that I tried to make sure it was not that. I wish it was, then they would be gone! They have done 3 MRI’s and they are all within normal limits. So now I am taking 50mg of Elavil at night, 45mg of long acting Morphine twice a day, and other pain pills for break through pain. I also still get 1-2 injections per week. I am not asking for a cure. I have figured out by now, that there probably is not one. But if you guys are open to sharing some support, it would be greatly appreciated!! I have tried 2nd, 3rd, 4th opinions, and more. They have all said that what I am doing right now is the best thing. I am still not HA free, even with all the meds I am on, but atleast I can somewhat function!! I have a wonderful husband that I have been married to for 10 years, and I have 5 children that I miss taking appropriate care of. If you guys have any ideas, I am surely open to them. I did go to a HA clinic, but they said I was ot a good candidate, and I went to a pain clinic, and they said they do not deal woth HA’s. So here I am, hoping to hear that I am not alone!! Hope someone was willing to take they time to read my story and maybe wants to be a cyber-friend! Sincerly; Lisa K. A couple of questions:  Are your still having one-sided paralysis with the headaches?  Does anyone in your family have similar headaches? It sounds a bit like hemiplegic migraine, which often responds to verapamil at sufficient dosage.  Theoretically, addition of magnesium and CoQ10 could help the effect of the verapamil, but I know of no studies to bear that out.

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