I know that not everyone's treatments for TN might be right for me but I'm just curious about some of the treatments that people here have undergone. I have my neurologist appointment Thursday and I know they may give me multiple options like they did last time so I think it might be helpful to know what has worked for others? I'm also curious about the side effects that you may or may not have experienced from your medications? My last question is about service dogs and if anyone here might have one. I recently talked with another teenager my age who is also going to college on a large campus with TN almost exactly like mine who has a service dog (I believe she said it was a medical alert dog that's also trained to help with certain activites). He dog helps her when she has a severe "twinge" or when her medication makes it difficult for her to get around (She calls them zombie days). If anyone has one I'd love to hear your experience. I think thats all my questions for now. And thank you in advance to anyone who replies I really appreciate it.
Don’t know anything about service dogs, but I am happy to share my treatment experiences. I was first put on Topomax, but that was by a neuro who DID NOT think it was TN. Topomax did not help my pain, made me a zombie, but I did lose 10lbs. In a month! Got to the right neuro, got the TN diagnosis, and started Tegretol . Worked great on the pain, a bit zombie-like, but became allergic within three weeks. I am told that you body will adjust to the side affects over time, but I had to stop Tegretol too soon to tell. Was then put on Gabapentin, and increased to MY max dosage of 2400 per day within 3 months. Helps make the pain less noticeable, but still there. Six months after starting Gabapentin, I saw a top neurosurgeon, and scheduled MVD. while that helped with the shocks, it did not get rid of the burning, boring pain. ( I have bilateral ATN) six months after MVD, I had a peripheral neuro stimulator implanted to help manage theATN pain. So far, so good! Will be having MVD on the other side in October, and hopefully we be able to reduce, or stop meds!
Best of luck with your appointment!
I have had good luck with Gabapentin, have had to greatly increase dosage over the years and still have some breakthrough pain, but it helps a lot. Here is a link to a great service dog orginazation www.cci.org/
My dogs are therapy dogs, not service dogs, but there are a lot of places they can go and I always feel better with them than without. My husband is in a wheelchair and we are looking into getting them certified as service dogs, for a Saint Bernard it comes natural to assist as they were breed to rescue people. I find it comforts my mind to have them with me and helps to have them by my side. As you can tell I am a huge dog lover and I have often thought of this for help with my TN, just need to pursue. Also the AKC has info about this http://www.akc.org/
Let us know how things go and good luck at the Dr's. Take care.
Betsy
I’m taking Gabapentin 600mg 3x a day and it is helping tremendously!! I’m still achy and I have this weird sensation like there should be a lot of pain there (I’m sure that description doesn’t make much sense, it’s just a weird feeling and hard to put into words), BUT the pain is bearable and the side effects are tolerable!!! I still have breakthrough pain a few times a day though. The first day I took it I was a zombie, the next day I felt really drunk, and the day after that I felt like I had a little buzz, but now I just get an occasionally drowsy feeling. For me this gabapentin has been a life saver!! Good luck with your appointment, and good luck with your schooling!!
I hated meds. I used topical lidocaine as much as possible. It is progressive disease…and I flew to a top TN surgeon and had MVD surgeon. Year two…no pain. I Come here to help others. Most who have good MVD…don’t come back here because they are better…higher than 90% procedure with a BEST TN surgeon
I couldn't have the MVD surgery due to a AVM that was discovered with multiple MRI and angiogram procedures.( : Lots of big letters! It's like a bulging vein that is too close to the TN area.I had the AVM treated with a cyber knife procedure.The thinking was that the AVM was pushing the nerve.I get it checked every 3 months and no change so far.I tried to tough it out with meds ,but each time it would come back more severe.I finally went to the top neuro surgeon in the area and he recommended a Gamma Knife procedure.After about 9 weeks,im having totally pain free days with (almost) no med.I'm happy with it even though i understand it can return.If it does,i will try the TNS procedure.It seems to have a good track record.I love dogs and my little Maltipoo KIKI helped me tremendously get through the tough times.Severe attacks did make her leave the room though.
Get the book! Mannnnnny options!
I don't know if this will help you but I was at my wits end; meds stopped working and I read on this TN web site about a woman's whose husband went to an UPPER Cervical Chiropractor. At this point I figured I had nothing to lose so I went to Dr. Hall in Los Angeles and within 2 hours m TN zaps had stopped. It's been two months without pain and no meds. Upper cervical does not do any cracking or twisting; very gentle pressure. I try to share this with other TN suffers because if it helps only one sufferer feel better, I will have helped one person avoid those meds and possible surgery. Good luck to you.