I was on Tegretol XR for 12 years following a craneotomy to repair a ruptured AVM. My neurologist in an attempt to help me out with my constant drowsiness, started to try me out on different anti siezure meds. Keppra first...no change. Trileptal was next. Significant side effects.... muscle weakeness, etc. A drop in my blood sodium level He was considering moving on to Topamax, but I have read nothing positive about it. I asked to go back to Tegretol and just live with the drowsiness. He opted to put me on Carbitrol instead.
His office called a moment ago to give me the message that my blood work shows my sodium came up since I switched (about 8 days ago). The doc would like me to hang in there for a week. He feels I still may be feeling side effects of Trileptal. I assume he feels the shortness of breath may be unrelated. I do not know for sure. I probably should mention that at the start of all of this---back in March---my GP had mistakenly put me on Cipro for an infection. This caused a siezure. My neuro detected some muscle weakness post siezure. It is definitely worse now. He said if it does not improve, he will get me into physical therapy.

NOW i understand some things a bit better.just where was your AVM with regards to location within your brain?i honestly cannot understand just why,for drowsiness,your neuro would even think that anti S meds would actually help that when most of them actually CAUSE that same side effect?you stated that the AVM actually ruptured,what deficits were present when that happened and what exactly was present immediately after your cranio?the really best way to fully check out any possible muscle deficits that are being caused by any sort of actual nerve damage would be with an EMG.this test checks out nerve flow to the muscles themselves by using needles within the muscle and stimulating the nerve that goes to it.it sounds a bit more grusome than it actually is tho.i am haveing my second one of these tests next week to check out why my neck muscles on my R side are withering.i just need to know whats up there.my spinal cord damage came from the AVMs counterpart,a cavernous hemangioma.it is venous fed instead of arterially fed like your AVM.they still can bleed but they ooze not pump like an AVM.

so,from what you have stated,the only real siezure activity you have had is when the cipro was started?this coud have been the cipro itself or in combo with the particular anti S med you were on at that time too.if you have not actually shown any other real siezure activity i really do not understand just why your neuro has you on an anti S med?i am just wondering what real benefit you are gaining there since this will NOT in most cases,take away drowsiness,only will add to it.i have had to try many of the anti S meds to try and treat two very painful neuropathic pain syndromes caused by my spinal cord damage and they ALL appeared to cause the most freaky side effects.my eyes and my gait were most affected but gabitril,well i actually used that as a sleep aid since it just knocked me on my butt,even at a very low dose.they can just cause alot of problems within their selves.

have you seen any other neuro or neurosurgeon for a second opinion on your situation or have you just stayed with this particular doc becaue he was somehow involved from the beginning?believe me,every neuro is very different in how they seee things and approach treatment options.it wouldn't hurt to try and see another just to see what he/she may have to offer you.i really just cannot see any real benefit to you with the anti S meds if you have not actually shown siezure activity,you know what i mean?seeing a good physiatrist(this is not a headshrink type doc)may be very helpful with determining just whats up with your muslces.this is what these types of docs do.very similar to physical medicine docs but they are just soo much more knowledgeable and can also direct you to the best possible PT too.i have been seeing mine since i had to go to acute rehab post op to rebuild my left leg and hand.they are just really great for finding muscle/nerve problems.this is the guy who is also doing my upcoming EMG.i just think seeing a physiatrist could really really benefit you and your situation right now thats all.

ask your neuro about actually seeing a physiatrist.i really do think in your current situation,it would just be a really good idea.he/she can also place you on the best possible meds(if even needed?) for your situation.i am really glad i have mine.he is the only one of my many specialists i have to see that can explain my unexplainable symptoms.i don't know what i would do without his knowledge and expertise,really.just a good suggestion for you since the title of your post was what doc to see?i would at least give this type of doc a good shot at your case.it couldn't hurt at this point ya know?

good luck kelrik,and please keep me posted on how things are going for you,K? FB