Hi,
this post was ages old and I have since talked to my neurologist about the symptoms that I had written about and if he thought that all my problems were just "migraine", he said no, he still says I have two problems. Migraines and TM.
I find that the changeable weather can bring my migraines on too and I think the Neuro has helped me better identify which is migraine and which is the TM.
But sometimes I do still feel a bit confused. I know stress can trigger my migraine as well and hormonal stuff.
Cheers,
Udkas.
I have MS and I have typical and atypical migraines. Sometimes my headaches last weeks. When I have an atypical one my whole left side goes numb but it is different from my normal MS numb. I can get dizzy and lose vision for short periods in my left eye. I also have a brain stem lesion. Since I was a young child I accepted headaches as a way of life. I take medicine but that means I have a headache most of the time but I don't fall down and vomit all the time. Barometric Pressure plays a big role in mine.
Alex
Hi Guys
Nice to find you, I am 40 and I have had a neurological problem that has been called 'complicated migraine' for just over a year. Prior to this i had the occasional manageable migraine but nothing else.
One day I woke up and couldnt walk straight, now i get blurred vision, watering in my eye, balance problems and head nodding oh.. and still the occasional rotten headache! Initial investigations found nothing.
I recently had my arm go heavy and my mouth drop down the left side, they did CT but again nothing.
They are not going to repeat the MRI so if something has developed it will just carry on! Before themigraine diagnosis it was suggested by another Neurologist that it was just an extreme stress response(...to?)
So once you have been told its all in your head you tend to lose faith a bit!
You just want someone to say "this is what's wrong, take this and you will get better!"
Thank you so, so much for your responses, it means a lot.
I think I will follow up on Quix's advice and find out exactly why my neuro doesn't think it's migraine (there must be a reason), my neuro certainly has never fobbed me off, he repeating MRI in 12mths or sooner if I get worse.
I have asked him all 7 visits I have had with him if he thinks it's migraine and all 7 he has said no, i don't think so, that the migraine is secondary... that yes i do have migraine but that's not my problem. I just don't know why he thinks this when all my testing is normal. I do think this is different from in the beginning, this is definately migraine...
I do have a sinus infection or something at the moment, so perhaps that is why I have migraines for so many weeks, yesterday I had sudden onset of discharge out my nose that was rust coloured, my nose just flowed this blood like stuff (but not bleeding nose) and I have had the sinus when you put your head down, so maybe that's why everything is so bad.
My neuro is miles away, not easy to get back into unless it's an emergency, I will maybe run these questions past my General Dr.
THanks again, I was just feeling fed up with the tongue thing and pain and confused to what was wrong with me, when my symptoms go away I don't focus on it so much.
Glad to know I am not alone, there is comfort in that (not that I enjoy knowing other people suffer.
Quix I have always been slightly insane.
THANK YOU, appreciated your answers.
Hi,
I've been through much the smae thing. I started getting weird symtoms along with murderous migraines, different from the migraines I've had since I was a kid. After seeing the obligitary partonising neuro, I enventually got a diagnosis of complex migraine disorder. When I got a bit shirty with my GP, he told me that it is one of those things they hear about at med school, but is actually very rare, and that most GPs never see a case.
What my diagnosis didn't explain was all my continuing neurological symptoms, and my migraine specalist thinks that in addition to the complex migraines, I have some other neurological condition, she thinks MS, the GP thinks Fibro, I'd just like an answer...
Sorry, drifted off there, complex migraines can mimic a number of MS symptoms, and of course, they are horrible.
Don't get fobbed off, and you are NOT wasting time (people who want antibiotics are wasting time). The pain from these migraines is completely disabling, and you shouldn't have to suffer it. Ask for a migraine specialist (if you go to an MS specialist, and they don't think you have MS, you get a pretty rubbish response), and hopefully, you'll get some answers.
Good luck and keep up informed.
I'm really sorry you're going through this. I went through some very similar sx several years ago and was finally given a dx of complicated migraine. I've never felt like that fit very well since my sx would last for weeks at a time (though get better and worse over that period, as you described). Preventative migraine meds did very little for the neuro sx, though did help my headache.
A recent bout of new sx (including a two month long headache) sent me back to a neuro and eventually (again) an MS specialist. Still no answers as my MRI is clear. MS dr thinks MS, but can't dx right now. I don't know what to think.
At any rate, you're not alone and I hope you can find some answers. Quix gave you great advice.
Stephanie
I find this the most perplexing side of neurology - the possibility of severe atypical migraines. I do know that during some kinds of severe migraine the neuro exam certainly can be abnormal.
I also know that in hemiplegic migraine the symptoms of weakness and such can last weeks.
It sounds like your neuro has a whole grasp of what is going on with you. He believes that you are having migraines, but that they are secondary to a TM process. If you are really upset by the thought that he may be missing some trees (migraines) for the forest, ask for a separate visit with him to go over his thoughts. Tell him you need to have some more understanding of what is happening. Press him for why he doesn't think this isn't ALL just migraine.
Consider a referral to a major headache center. Talk to an expert.
So sad you are now insane. I am merely now inane. We may need to sit in a corner and twiddle our lips until we get some better answers. ;-))
((HUGS))
Quix
Sorry I forgot something...
These symptoms are different to what I had in the very beginning, but some things similar if this makes sense, but the tongue numbness is very new, I had it occur once before and it was severe and then I got a headache, where this time it's there most of the time, just tight underneath and weird tingle feeling but sometimes it can be painful..
Thanks, the symptoms are driving me insane, so unpleasant, can't focus on anything else while this is happening..