I've been researching TN and it seems like the prognosis is bleak. Pain meds may work now, but will not work forever. Surgery seems imminent. I never thought I'd volunteer for brain surgery, but I actually considered asking my neurologist about having it now while I'm 49 thinking recovery would be easier the younger I am, but even if I'm lucky and it is successful it is not a permanent fix.
I'm trying to remain positive, but it's not easy. Tegretol along with Baclofen got my pain under control, so after months of no pain my Dr weaned me off of Baclofen. That went well so we tried a program to get me off of the Tegretol as well. That did not work. I'm back on the full dose of Tegretol and the pain has not gone away so I'm going back on the Baclofen.
I feel like the shoe is going to drop at any moment so I find myself obsessing over it. When will I get slammed, how bad is it going to be, how long before we can get it under control again (IF we can get it under control again). It's awful. At my worst I could not eat, drink, talk, , touch my face, or brush my teeth without feeling like a railroad spike was being driven into my face. Sometimes I had what I call "shock therapy" which was unbearable. My pain felt like someone took a needle and threaded it with barbed wire and ran it up my nose, across my cheek, down along my gums and it ran in a continuous circle. Then the little devil on my shoulder would yank it just to remind me how bad it could get.
I'm afraid I'm going to fall into a depression. Every time I think about it I just want to cry.
How do you remain positive with this?
I can't talk about it to anyone because they honestly don't get it. I understand that, I really do, but it would be nice to talk about it without seeing that "eyes glazed over" look a person gets when they don't understand.
Please share some positive thoughts and how you are able to maintain a bright outlook.
I sure understand. I have been bounced back and forth from 4 drs now. Saw neurosurgeon yesterday but all the do is surgery. NO meds. I have 4 DRs and none will do anything. Talk about frustration. The depression is getting worse cause no one seems to b doing much to prescribe meds to even try. I am at a dead end and tired of being bounced from Dr to Dr. What now? IDK. If I go to one of them they say I need to go to another. Then theywill say go back to primary care and she never does anything. Just pawns me off of neuro who is doing nothing. I am not sleeping and the meds I am on are playing havoc w my mood. I don't know what to do now. I am begging for help from all 4 and still nothing. I can sure see why this is called the suicide disease now. I can't get anyone to help me!
Hi Coralumama. There are various meds and treatments available so don't give up hope. Plenty of people have a long remission from pain with an MVD. It is a serious op that's true so do have a good think about it.
The community here are quite happy for you to "talk" to us. We all know what you are going through. There is info for your friends and family to read so that they may have a better understanding of the pain.
I keep positive by believing there will one day be a cure or at least better meds without side-effects.
Wondering what dosage you are on for Tegretol? I am on 400 a day but univ dr said most are on 1200. wow this med really messes me up. I have extreme lows and ups. Dr increased amitriptyline double but as of yet I haven't heard from the Dr who prescribed Tegretol. I too would like to try other meds but seems I can't get anyone to do a thing. Don't know what Ishould do now. Wll b changing Drs Oct 1 so til then I try to get thru each day. I feel awful. My family has about had enough of me too. Can't blame them. Its like my personality is changing and cognitive skills too. Positive thoughts> there are none for me.
Moose--I am on 800 a day. My doctor said when on Tegretol your blood should be monitored to make sure you are on the correct dosage. I was maxed out at 800 so I could not take any more than the 800/day. The Tegretol helped me tremendously, but I still had small stabs of pain so I was put on Baclofen as well. Those two meds rid me of my pain entirely. Dr said after 3 months with no pain we could try to wean me off of the Baclofen. We did that successfully. Then we started a program to get me off of the Tegretol. That did not work. At 600mg a day, my pain started again (that was July 1st) so now I'm back to a full 800mg of Tegretol a day and I just started back on the Baclofen yesterday.
I am so sorry you are having such pain and such trouble getting help with it. Did they test your blood after you were taking the Tegretol to see if your dose could be increased?
I'm glad you found another doctor to see although it is a shame you have to wait until Oct 1. Were there no doctors you could find which were recommended for treating TN? I can't believe you are not able to get any help! That just astounds me! Can none of the doctors recommend a doctor who is knowledgeable of TN and treatment for TN?
It seems I will have a new Dr. So hopefully something can b done. These meds seem to make me very jittery, and my moods change so much. Other Dr doubled dose of Amitriptyline. Can't see any difference. Have not had any blood tests taken since I been on these meds. I just feel awful or the pain is there big time. I am so hoping this new Dr will b willing to at least try diff meds but somehow I doubt it. She will prob want me to get back w neurologist. I left a msg w them lst wk and still haven't heard from them. I don't get it. Why are they so reluctant to gv you sleep aids? Or anything else to try. I am at my wits end. I stormed out of my other Drs off last time I was there. She did nothing for me as usual. I have not even tried increasing this med. Nothing cept Tegretol and Baclofen. I feel there must b other meds or combos I haven't tried. This is so frustrating. She (dr) asked me why I thought my frustration and anxiety was so bad. I told her YOU> cause they won't do anything. I wait for an hr to see her after getting back in the room. THen when she is done I have to wait for the nurse to bring in the summary paper work. I just left. Next time I have a bad 'attack' I am just going to go to ER. Least I can get something for pain. And this Tegretol is drying me out really bad and I do drink a lot of watr since I am prone anyway to dehydration. I am sick of forcing water down. You just can only drink so much. Thanks for your reply. Any suggestions would b greatly appreciated. At least here I get some ideas and help. Thanks so
And no I have not had any blood tests since I been on these meds. About 7 wks now. But how can I when I am being pushed from one Dr to another? It is an awful situation.
Hello, friend and fellow TN family member. I read your words and I understand them. I think we all understand the because we feel the same pain and fear. My pain has been on vacation and because of my current homeless situation I am very happy that it is one less thing to worry about.
I am 48 and I don't want to have surgery. I know the pain is still with me because every once and a while I feel a sharp bolt that lasts for a second or two. I still take my medication but only one a day instead of the prescribed 3 pills a day. The one is working for now. I try not to think about the moment the pain comes back with the intensity that it had before my situation began, you can read about my life in my blog at kelise1967.blogspot.com and kelise2015.blogspot.com instead I take everything one day at a time, one moment at a time. I am grateful for the moments in which I am pain free. I cry through my moments of pain. Stay strong, we are in the early stages and our ride is most likely to be a very long one. I keep a pain journal to keep up with when the pain hit and how long it lasted. I keep note on what I was taking at the time and how well it worked. l learned that breathing deeply and trying to relax my mind helps not a lot but enough. I hate to admit it but after a while the pain no matter how intense becomes a part of who we are and learning to live with it is our way of beating it. You can do it, it hurts unimaginably but one moment not in pain is a wonderful moment of living.