I've recently had to continue increasing my trileptal daily. My breakthrough pain is also getting more frequent. At this point my anxiety levels are so high, and I feel myself getting more depressed because of it. I don't know what direction to head, because I feel I've already put myself through everything I can to try and stop this terrible pain. I feel so bad for my husband, because he feels so helpless. All he can do is sit next to me and rub my back while I hold my face and wait for it to stop. All I do is cry because I just don't know what to do.
I recently had back surgery, and the neurosurgeon who did that, asked my why the surgeon who did my mvd ( and didn't find the arterial compression) didn't just cut the nerve. Has anyone heard of that????
Thank you everyone for listening.. I'm so glad to be here !!
Hi...I'm so sorry to hear about what U are going through. My husband is in the same boat as urs. Very sweet about all this & could not see myself able to deal with this w/out him. He has been such a great encouragement but does often feel helpless. Especially when I am in the climax of these pain attacks that we all go thru. I am like u crying and holding my face w/ a hot towel trying to wait for the pain to let up. Sometimes I just cry out to God to please heal me or take me. I know how u feel and will keep u in my prayers and just to let u know that u are not alone. We are all her to help each other and to offer support..keep the faith..I know it's hard..but we must!
I had a neurosugeon state that for atypical pts...he has had pts still ask for mvd even though he does not encourage this for atn pts..only as a last resort..he sd that since nothing is compressed that he will go in & " rough up the nerve" those were his exact words. He sd that this damages the nerve and basically stops the nerve from sending those signals...but of course the nerve then can and prob. will regenerate and then who knows what the pain wil be like..especially for atn pts..this is sometimes due to some kind of trauma such as a dental procedure etc...then that means the reason we have pain is due to the nerve being damaged...so this kinda confuses me..if they basically go in & damage the nerve even more how does this help our pain stop..it seems like it could make it worse..but if they cut it... could it help...not sure..is seems like it is all a risk..& seems like the Dr's generally state(atleast to me )that the procedure could help alleviate some of the pain but there is also a chance that the procedure could make the pain even worse..best wishes and hope that u r feeling better today!!
Hi, my name is Natalie and yes I've heard of ccutting the nerve I believe it's called a Rhizotomy. The problem with that one I felt is that there is a risk like everything else that u may not be able to feel your face or tell if something is in your eye. I liked the part of not feeling my face. Ive had this for 11 years
Min_C -- I'm not sure if I ever answered you question, and if I didn't I apologize -- My neurologist had gotten to the point where he lets me adjust my meds myself. Right now I am taking 900 MG of Trileptol - right upon waking, about 7 or 8 hours after that and right when I crawl into bed. But don't get me wrong, if I wake up in the middle of the night with an attack, my bottle of water and my pills are right there. They are in my purse, in my glove box, and before I got layed off, they were in my desk. I hate it, I hate it, I hate it. If I go somewhere and I don't have my pills with me I get freaked out, and know that I can't stay long or have to measure the time from when I took my last dose. It sucks.
And Baze - my L5 - S1 fix was an aftermath of having the L4-L5 discectomy I had 13 years ago on the right side. This time it was the left side. The neurosurgeon who did that for me is the one who was an understudy of the neurosurgeon who did my MVD. And the Dr. who did my back was the one who asked me why "he didn't cut the nerve while he was in there". All questions I can't answer as you all know.
None the less , life goes on, and we figure out how to deal everyday. It sucks there is no silver lining in this. Usually you can find a silver lining in everything, or almost everything. This situation, you can't...
Well, my GP recently did blood work on my me and found my liver enzymes to be elevated. With getting layed off and changes in my insurance, (plus I was out of town for 3 weeks over the holidays) I haven't had the chance to get into my neurologist. My GP wants him to put me on new meds. There is NO WAY I am going through that. NO WAY ! So, I started on milk thistle and dandelion root, each of which reduced my enzymes from over 400 to 165. She was happy, so I'm happy. And this neurologist is going to be a new one for me. Since I'm not working in downtown seattle anymore, I'm not going to drive into the city to see him.
Also, they want to start testing me for MS. But, the only symptom I have is the TN, which they can't explain. Another thing I don't want to get into, because seriously, what are they going to be able to do to treat the TN. As far as I'm concerned, nothing.
I hear ya. I am stubborn too. Ha. I didn't like the Tegretol, and I am hoping against all hope that I tolerate the trileptal at the current dose of 1200mg daily. I guess we'll find out in a couple of months when I go back and have blood work done. Which if he doesn't ask me, I will definitely ask him to do!! I totally zonked out on the teg. plus I had other nasty side effects so I don't really know if it would have effected my liver. But I sure hope this one doesn't cuz it's workin so far. Maybe they can try some of the tricycle anti-drepressant meds for you. I hope you can be pain free soon!!!! I know this ride is relentless and not fun and all. You are not alone. Best wishes to you for something new to come along that works for you!! Peace, Min