Nothing is working to stop these migraines :(

I am absolutely at wits end with my migraines...I am almost 24 and have two kids... I have had them since as far back as I can remember usually 6 months or more apart (there was a time when I went like 5 years without one!) but in early 2011 I had my daughter via c-section with a spinal block and now I am having 2-3 full blown migraines a week! My MRI and EEG are normal, and while I have a thyroid auto immune disorder so far my thyroid hormones are normal and I just have a swollen thyroid. I have been through several doctors and so far none of them really seem to know what they are talking about, or they think I am just trying to get pain meds even though I tell them I don't want pain meds I want an answer! So far they have tried me on anti-seizure meds, 4 different migraine medications including Topirimate, and have tried those shots the ER always gives you (I forget what they are called) and so far nothing has worked they just started me on Imitrex but frankly I am not optimistic... the migraines don't seem to be triggered by anything in particular and I rarely have vomiting, nausea or the like, but sometimes it does happen, lights and noises also don't seem to aggravate me when I have them either.... here is a description of what happens...
My middle left finger starts to tingle and over the course of an hour this numbness travels up my arm and into my face until my entire arm is numb and pretty much useless and the left half of my face and tongue are numb and useless, my boyfriend thought I was having a stroke the first time he saw this because I loose all control of my facial muscles . Then withing about 10-15 min of all this numb happening my left eye becomes completely blurry can't see anything but a circle of blur best i can describe it as is someone peeled off my cornea or something... withing 20 min of this the right side of my head pounds and usually I sleep like the dead for about 5 hours, no one has been able to wake me up from this for anything, smoke alarms have even gone off and nothing... when I wake up the throbbing pain is usually gone and I am exhausted despite all that sleep :/ and I feel like the right side of my head was bashed in and every time I move my head to look at something or bend over etc the pain gets a million times worse this will last anywhere from 1-3 days after the original episode and my current doctor seems to think they are a different headache than the migraines as he told me the imitrex will only work on my migraines not the headaches I have everyday >.>. but he is at a loss as to what is causing my headaches, I have seen this neurologist twice and he seems to already have given up... and the second time was just for the results of my MRI and EEG... I need to find an answer to these as I can't go to far from home or I will be stranded if i drove myself and as hard as I sleep during the migraine I am afraid to even be left home with the kids because if the house were to catch fire or something I wouldn't wake up and being only 5 and 2 they wouldn't be able to wake me, my boyfriend cant even do it. does anyone else have experience with these types of migraines? what have you done? has anything worked?

My symptoms are also stroke-like (they are called basilar migraines) - I have numbness, confusion, inability to talk, and lowered level of consciousness leading to unconsciousness. For a long time I did not have any notice a migraine was coming - I would just hit the floor - it felt like someone had pushed me hard from behind. Now, I can feel one coming and I have time to find a safe space to curl up and fade out. It sounds like you also have time to find a safe space for both yourself and your children - when you first feel symptoms coming on that is the time to contact your boyfriend, neighbor, friend etc... to come and help you. I have a list of people I can contact when I feel that I should not be alone. Unfortunately, I have tried several preventative meds and have not found one that works - the best thing that I have done is identified my triggers and tried to cut down on my exposure to them. I am sorry that there is no cure for this disease but please find a supportive physician who can help you figure out what works best for you.

Also, I just wanted to add that you talked about how you sleep for hours afterward and even your boyfriend can't wake you up - I just wanted to suggest to you that you are not really sleeping. I think it may be the same thing I experience - a lower level of consciousness. I think there are 7 levels of consciousness and the symptoms I have most closely resemble a stupor which is one level above coma.

Hi
I have just read your post and feel so sorry for you. I have just been diagnosed with migraine after years of terrible headaches. I had a car accident about 15 years ago and it was mostly put down to that. The pins and needles you describe are from the c5 or c6 dermatome -the nerve pathways in your body. Have you had any nerve conduction studies? Impingement may also be a factor. I am an RN and have heard of an " old school " neurologist treating basilar migraines with localised injections of Valium to relax the head and trapezius muscles. I don't know if this is a common practice any more with the creation of migraine meds but apparently works like a dream.
I just can't imagine your pain and having to take care of your little ones. My heart goes out to you. I hope you find some relief and a great neurologist.
Alia68

I see a good massage therapist regularly and she does a lot to release the trapezius muscles that lock up my head and neck and contribute to the headaches.

I agree that it sounds like a pinched nerve may be a trigger point for you.

Jewishmother wrote:
Also, I just wanted to add that you talked about how you sleep for hours afterward and even your boyfriend can't wake you up - I just wanted to suggest to you that you are not really sleeping. I think it may be the same thing I experience - a lower level of consciousness. I think there are 7 levels of consciousness and the symptoms I have most closely resemble a stupor which is one level above coma.

Well said. When I mention this 'stupor' to my neurologist and TELL HIM THAT I'M IN IT 24/7 he still talks to me like I have 100% cognition. I am the one to keep pushing for treatment, when nothing has worked, and you'd think he'd wake up and understand that sometimes his patients are in so much pain/confusion that they are unable to help themselves. Sometimes I go weeks without knowing what the hell I have been doing with my life, and have no sense of time and/or space, and those are just more weeks he could have attempted to follow up with my health, KNOWING FULL WELL I AM IN A STATE OF STUPOR!

My God!

Do you mind if I ask you what your triggers are? I have tried everything: food, alcohol, caffeine, weather, etc. and still can't pinpoint most of my triggers. I'm just looking for ideas.

I have also heard that psychedelic mushrooms have been used to treat the worst headaches of them all, cluster headaches, when no other treatment has worked. I might give this a shot and see if it helps with migraines/whatever it is that I have. Check out clusterbusters.com for more info., since I'm sure you're probably willing to try anything to get some relief to your situation, as am I.

I wish you the best of luck. I sure as hell need it.

Thanks for all the responses sorry I took so long to reply, it has been a pretty hard few months migraine wise for me I was out of commission for most of march :/. I am kind of thinking that its due to nerves in my back seeing as this all started to get severe after I had a spinal block with my c-section, and now that you mention it, I could see the "sleep" being just lack of consciousness since I am still extremely tired when I wake up you would think sleeping that long I wouldn't be so tired lol. My Neurologist prescribed me Imitrex, just before I last posted, to try but it actually made my symptoms worse... about ten minuets after I took the pill I felt like I was going to vomit (and did) and my head pain was more severe :/ so that one is out! I have been trying to get disability for this but so far its not working, largely due to the fact that my doctors don't seem to believe me... as to how often I am having them and such... and my primary doctor filled out a paper for them saying I wouldn't have to miss work more than any other person... which is crap! (he also put on there that his answers were nothing more than guesses >.> ) I have not had a nerve study done before... in fact I have never heard about that! lol I will bring that up to my neurologist next time I am in his office, maybe that will shed some light on things... Luckily my boyfriend is usually home to take care of the little ones when I have a problem since he is out of work but once he goes back I don't have anyone to watch them most of the time, my dad and his girlfriend are the only ones who live in the area which is useful on weekends and after like 8pm but before then during the week I am out of luck pretty much.

I recommend trying the Imitrex again. The same thing you describe has happened to me once before - I took an Imitrex and threw up 10min later, then had extreme head pain all day. However on any other time I've taken it, it's worked like a charm. Also, if the Imitrex still doesn't work you could ask your doctor to try other triptans like Frova.

Edit: Also it really helps me to take 1 Ibuprofren at the same time as the Imitrex. Not sure why a single Ibuprofen makes any difference, but somehow it does.