Odd symptoms

Hello everyone,

I've been gone for awhile while I was trying out the tegretol and I'm happy to announce that this one is not affecting me adversely (in fact I have had no side effects whatsoever). I have been slowly increasing my doses and so far I am still myself, the pain is still there but we're trying to find that golden dose still. So that's my good news!!!

The bad news is I'm experiencing some odd neurological symptoms that had been occurring before I started the medications and now I'm realizing that they have been going on for a long time (way before this whole TN fiasco started) and they have been getting worse and worse as time goes on. As of late I wake up with an awful headache everyday that isn't confined to one area of the head and makes me so nauseous that I sometimes dry heave. It gets better as the day goes on (which is weird you would think it gets worse) and isn't bothered by light or sound like a migraine would. I also feel this intense pressure at/inside the base of my skull like someone has put a balloon in there and is over inflating it (those tend to be my worse TN days for some reason). When I went to my occupational therapy appointment the other day they did a strength test in my hands and my left is significantly weaker than my right (now I know what you're thinking everyone's left is weaker than their right but I am an artist, lacrosse player, and I play the violin so my hand were normally close in strength). I dropped an entire container of gold fish food on the floor the other day because it literally just slipped through my fingertips and I thought I was holding it tightly and I'm noticing that my left hand can't go the same speeds doing tasks (such as typing) like it used to. The left side of my face is also going numb for some reason (when I'm not having a TN episode).The last odd symptom occurred today when I was walking to class. My left leg suddenly got an odd descending, patchy, cold feeling (kind of like when your foot wakes up from sleeping before the pins and needles part). I have no idea what's wrong with me all I can do is pray that this weakness doesn't flip over to my right side so I can keep going with school and my art.

Anyone else had odd symptoms like these? I have an appointment with my neuro tomorrow so hopefully he can tell me what wrong and/or try to fix it. My mom thinks he might order an MRI just to see what's going on in there (whatever that means?!?!?!?)

Yes, if you have not had an mri to this point of your brain, I would think your neurologist would at this point with these added symptoms be negligent if he did not order an mri. Keep us informed and I will be keeping you on my mind and in my prayers!!

Jay from North Idaho

I can think of three things (and there are probably more) that this could be. One, migraines don't necessarily have the symptoms of pain because of noise or light. Not everyone has the same symptoms but pain in one side of the head, nausea and vomiting. I was just at my neuro yeasterday and she assured me yes, migraines and TN have some interconnection. A migraine is a neurological event. The headache is a symptom but if you are having an pet while having one, huge parts of your brain will be lighting up.

As for the other neurological effects. Sometimes a migraine can bring on a TIA


and you should talk to your doctor about this because it is serious.

The second thing but less likely is SOME of these symptoms could be caused by a low b12. I know, it sounds dippy, but I went to a neurologist about 11 years ago because I would fall for no reason, my legs would go out, I couldn't grip things etc. I took b12 under the tongue and it took about a month before I felt better but I still can't feel cold in my feet. That effect was permanent. B-12 is responsible for myelin health and you should probably be taking it regardless. But the loss of strength doesn't sound like a b12 problem.

The third - MS. They can do painless tests for this and can actually measure how long it takes for the impulses take to communicate to the brain.

But an mri is the only way to know if anything is going on in your brain. But please let us know because the exchange of information is important. If it's a side effect from Tegretol, we would like to know. Really we can all speculate but only after tests are done will you know what's going on. Good luck.

I don’t know if you’ve had MVD but I’ve experienced about the same symptoms are you! My left side (TN pain side) that side of my face will get this tingling feelings and sometimes it will get in my fingers and hand. As well as my muscles will get extremely tight on my left side of my face. Then my left eye will get extremely foggy and blurry! My eyes have always been perfect! But I’ve noticed my left eye is now foggy and it gets ‘tired’ easily, tired as in when you stare and it starts watering and gets a heavy feelings. I don’t know if we are experiencing the same thing but I thought I should share!