Constant Migraines

Hi everyone.  I've had constant migraines for over 5 years now and have tried a lot of things and have seen a lot of doctors.  I see others like me on this site and it makes me sad.  Some things that can cause constant migraines are: Hemicrania Continua and Idiopathic Intracranial Hypertension.  I'm going to see if I have either of these things but even if I don't maybe someone else on this site will and I would've helped someone just by mentioning these things.  I'm also going to see a high ranking specialist soon and may have more causes of constant migraines to post for people.  Anyway, it'd be nice to relate and talk to people like me and maybe we can help eachother out and throw around some ideas, so please write me.  I'm 23 years old and the migraines started when I was 18.  For years before that though I was getting increased headaches of increased intensity, but they were never disabling until when I was 18, and it all seems to happen overnight.  What makes me a little different, and which I've never heard of before is, I was just asleep when I was awaken in the middle of the night with all of the muscles in my back violently spasming.  It felt like 3 people were shaking me, then I tried to move my arm and it twisted back into me, then I tried to get up and then all the muscles in my legs were going crazy and I didn't have any control of my body.  I got up anyway because I was so scared, but walking was difficult and I was bobbing up and down and crashing into the walls because the muscles were all spasming.  Then I tried to scream for help but I couldn't.  My neck was stiff and it seemed that every muscle in my body was spasming and I couldn't talk.  All I had control of was my eyes and I could move them around, the rest of my body was crazy.  I tried to open the door to my room and couldn't and had to do it with my elbows.  After a few minutes of this I was normal again, although my arm still twisted around off and on throughout the night, and I did have leg spasms every night for about 2 years after that.  But after that night I had constant migraines with are usually low in intensity, but have periods all throughout the day where they get bad.  Every morning when I wake up they are at their worst, and anytime I eat anything that triggers it, etc.  Twice I had migraines that on a scale of 1-10 were a 10 and that lasted about 10 days each time where I had to crawl to the bathroom if I needed to use it.  They are very hard to deal with and I haven't been working or out in the world for all this time, I've just been to neurologists and doctors and trying lots of pills.  I'd like to find out from others though what they think I could have or what else causes constant migraines.  I know migraines can get so bad that they can cause seizure type things and maybe that's what I experienced that night, but I never felt a migraine until after this.  I had headaches but never a migraine until this, plus I get these spasms at night and that's when my migraines are at their lowest severity so I don't see how it could cause a seizure at night.  Also, when I've had those 10 scale migraines for about 10 days, I never had any spasm type things happen to me.  So I'm wondering, since migraines didn't start until after that spasmic night, if the spasms are the cause of the migraines.  If there is some sort of epilepsy condition or something that exist where migraines could be the most noticable thing.  I've had a sleep study but that didn't show anything because the spasms went away after about 2 years and I just had the sleep study done.  Okay, please write me even if you don't know what's going on with me because it'd be nice to talk to people dealing with constant migraines.  Thanks. 

Hello

I am new today, just wanted to see how everyone else suffers I guess. I have Hemiplegic Migraines that I suffer with daily. I was 13 when I started having visual distortions I attributed it to my mothers cooking. Then at 15 I had my first absolute fall down, back spasms, distorted speech and loss of major muscle control. I don't know why but they thought it was epilepsy and gave me tegretol, the problem was I was completely alert and aware of what was happening to me. The tegretol did not work.

As for your statement on the movements you made A girl it sounds like your going through a tough time. I felt so alone and like such an odd ball because one my sister said I didn't really have a problem that I just wanted attention and two I couldn't work. I tried so many jobs and falling down on the job is just humiliating and there wasn't one where I didn't have to be hauled away in an ambulance. So scary no one wanted to be my friend, and after I lost the couple of friends I did have, I have just been isolating.

I am glad I was able to have one son since then, I have finished a degree and a couple certificate programs however I still can't control the (migraines or episodes) I have a migraine specialist he prescribes fiorecet as needed, since I had a horrible experience with topamax. I just wanted to say hang in there. Its gonna be hard, looks like you've come to the right place for support. I wish I knew about this place when I was 23.

Thanks for your support people and I feel for you all too. I am going to a specialist in a little over a month and hope all of this gets figured out soon. I did try the Indomethacin but unfortunately it had no effect. I started on 25 MG 3 times a day for a week, then 50 for a week, then was on 75 MG 3 times a day and nothing. I know that there's Indomethacin resistant Hemicrania continua that respond to other medications so that may be something I'll have to look into. I'm going to read about the Status Migrainous and
Hemiplegic Migraines because I'm very curious about those. Stick in there every body.

I am so pleased you are seeing a specialist soon, and really hope they can do something to help you. I have got to say that my understanding of Hemicrania Continua is that Indomethacin response is diagnostic.

This is a criteria laid down by the International Headache Society, and the protocol all Headache Specialists go by. This is why the 'Indomethacin Test' is done. The criteria for Hemicrania Continua is that it does not respond to any other medications only Indomethacin.

I would agree with that as I have struggled for so many years with meds that have not worked or made the situation worse!

I really do hope you can get to the bottom of your situation very soon and find something that works for you!

take care

Ann

So I've been doing research and think I could have Parietal Lobe Epilepsy and this seizure and others were Frontal Lobe Seizures because Parietal Epilepsy moves into the temporal and fronal lobes also and other than the symptoms I posted I see to have symptoms of all 3 epilepsies and do have epilepsy in my family.  The migraines started when the seizures did so I think if I am diagnosed with this epilepsy and start taking meds for it, then the migraines could go away.  We'll see.  I'll talk to my doctor about it and tell you if I'm getting better in a month or two, I don't even know if I have that but I feel pretty much positive that I do, and I read other people's posts who've had these epilepsies, all over the internet, and many of them had daily or constant migraines that went away with the epilepsy meds.