migraines with contortion, joint pain and confusion

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Olykate
Regular Member


Date Joined Jul 2005
Total Posts : 32
   Posted 10/26/2008 9:55 PM (GMT -7)   
Hi
I have migraines and neuropathy usually down my right side. Since starting neurontin the neuropathy is usually under control except for lately, probably need to up the dose again... Migraines are generally about half the month and partially relieved by triptans most of the time but not fully, and since I only get 6 a month with a fifty buck copay basically I have to live with migraines, I don't get relief. For a couple months of the year I can go a couple weeks straight migraine free but not lately
My parents moved into town and are all worried about me, I guess I don't think a lot about what is going on or I'd get real depressed and even suicidal. Better not to think. So they bought me "migraines for dummies" Ha ha ha and are wanting to know why I twist up during episodes. My body usually contorts on the side of the migraine, and having joint hypermobility I can really get contorted without thinking about it. People stare at me too, and if I try to control it I still limp. It does not hurt to twist up, I rather find it relieves the pain somewhat in all the joints, which feel like they are sort of like about to explode, including my teeth. The more I press on my head and contort my joints the better it feels so I can will myself to stop if people are bugging me about it but I involuntarily or unconcsiously start doing it again a minute later. I get real confused during attacks, left is right and all kinds of embarrassing mistakes. Does anyone else do this? I have seen some excellent and more crappy doctors, not much help so far and am not too hopeful. I get my retina checked for MS and prescribed another couple thousand dollars of physical therapy, and that is about it.
There is a lot of arthritis in the family but not much else. High blood pressure,, emphysema. Nothing special. Maybe a lot of depression.
Anyone else get this kind of weird stuff?
Thanks,
Kate

Easy Goin'
New Member


Date Joined Nov 2008
Total Posts : 3
   Posted 11/18/2008 12:22 AM (GMT -7)   

Are you sure you're not having a partial seizure??  I've watched my son do what you've described & that's what his diagnosis was...He takes 3 pills a day and all is OK.  If I were you I'd see a neurologist or your GP and tell them what's going on. That is definitely not a normal migraine.

Good luck!


Olykate
Regular Member


Date Joined Jul 2005
Total Posts : 32
   Posted 11/22/2008 11:09 AM (GMT -7)   
Hi,
Thanks for the reply, I had wondered about that. I got a referral to a neurologist but she is busy til next spring. Guess I can wait, it's been years (: I quit working again so am at home where I don't have to try so hard so things are better. Doing retail sales with a migraine is really hard. The owner gets them too b ut refuses to take medication. Some kind of man thing.
I just read a bit about partial seizures and the symptoms and effects of both migraines and them are similar. Very interesting. I hope your son feels better knowing what is going on. I think the worst is not knowing.
Thanks,
Kate

Easy Goin'
New Member


Date Joined Nov 2008
Total Posts : 3
   Posted 11/24/2008 12:04 PM (GMT -7)   
Spring! Good heavens. Where do you live? Just curious if there isn't more than one clinic or neuro around. I couldn't tolerate my migraines that long w/o some type of relief, even if it is a prescribed narcotic. If you are having partial seizures and had one while driving which resulted in an accident, you could be sued for not reporting it to the state-providing you live in the US, that is. Been there, almost did that til I was advised differently.

Good luck to you, and if I were you I'd see someone else soon.

mrs mac
Regular Member


Date Joined Nov 2005
Total Posts : 163
   Posted 11/25/2008 8:35 AM (GMT -7)   
totally agree with what has already been said!!!

when booking your neuro, try and get one who specialises in headache conditions, really helps to get a confirmed diagnosis of what exactly is going on, then you can get a proper plan put in place

good luck

Sandra xx

Easy Goin'
New Member


Date Joined Nov 2008
Total Posts : 3
   Posted 11/27/2008 6:04 PM (GMT -7)   
One more thought...If you call that neurologist's office & speak with his secretary, she might be able to get you in before spring time. They have the doctor's entire calendar and know when he's going to be out of the office, in office, can be squeezed in, etc. When I'm in a lot of pain (not from migraines or seizures, something else), I call her and get in ASAP.
 
Please, for your own sake, call her next week and plead your case.
 
Elisa

Olykate
Regular Member


Date Joined Jul 2005
Total Posts : 32
   Posted 12/27/2008 3:36 AM (GMT -7)   
Hi,
Thanks all of you for the ideas, I did get on the call list for cancels. Partial seizures is an interesting thing to look into, one of my docs thinks it's plausible. Another funny thing... there was a story about a rare sleep disorder that is found to predate parkinsons in the news a few days ago. I have that sleep disorder. Gee. Fun. I am going to have a busy neurologist.
I am having another run of migraines I cannot end. Ugh. I do have a med that is used on seizures, tried that on a few migraines and it seems to work.
I just stumbled upon a little product called Auxigro. I am extremely sensitive to MSG. Auxigro is a chemical marketed to be applied to crops boosting performance, containing MSG and GABA. Since the FDA does not regulate MSG they don't care about how much MSG remains on/in the produce and who would think to ask if your fruit has MSG? I had no idea... and gaba too, just what I need, unknown amounts of extra neurotransmitters science does not understand put alongside the other things they don't understand in my brain. I take gabapentin, (which was developed to treat partial seizures) usually it works on the peripheral neuropathy and some months I don't have many migraines since starting it, and sometimes it just does not work. Lately have eaten eaten a lot of things I just learned definitely have Auxigro or plain MSG added, I have completely failed to rid my diet of this toxin. Very frustrating and expensive too, Imitrex is not cheap in the US. If it is more a seizure thing I will gladly stop buying these expensive pills, which don't work about 1/3 of the time anyways. At least now I know one alternative, and it's cheap too. Yay.
You probably all saw this already but if you did not it's funny... and I thought I had weird problems. A guy who was taking migraine meds daily fell asleep in a chair and almost lost his legs as they fell a little too asleep. In surgery they made the first cut... and he bled green. Got his story in the BBC and the Lancet, but the Lancet does not have the nice picture of Spock.
http://news.bbc.co.uk/1/hi/health/6733203.stm
Priceless.
Kate
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