how on earth do people with this wretched disease go years or even 20 years suffering with this?
i'd like to know if anyone has had any treatment aside from drugs, ie, cannabis oil, glycerol injections, or any other type where it has worked out please
im on oxcarbazepine 2100mg and gabapentin 1800mg a day, upped oxcarb the other day and today got confused and took an extra gaba anyway, i have pain today so even taking two of each this morning is not working! why do these tablets work for a couple of days then get pain breaking through? what happens when the drugs stop working? would love to hear about treatments that work.
Hi there - totally understand!
I am a newcomer to this 'club of pain', so my comments may be somewhat naive. I have a very good physiotherapist who is also a personal friend. He said that when things get worse, he would try acupuncture, if I wanted that treatment. He has several clients where this has proved very helpful, apparently.
Have a go and let me know how you get on.
Stay strong, my friend. Colin
I will get back to you mid next month as i am having an MVD on 25th May but i gather i will be in hospital for a week and then i dont know if i will be on a lot of pain killers or what.
Where are you having the op? I wonder if they will do that at Leicester. I'll have to find out.
Oh, I am in Australia so not sure what they do in the UK. Find out what is on offer where you live though and i will get back to you about what its like and whether it works well.
Fingers crossed for you :-)
Hi Valkyrie. Yes ,I am very interested in hearing if you have the energy after an op to post here. Best of luck . I have had MRIS which let me know the TN could happen on the left side in the future( awful news)while I am fighting the Monster that currently lives on the right side of my nose.Have neuro appt in 10 days .I am looking forward to it.I am on 3x75mg Lyrica which lets a lot of pain in and the terrible side effects but am going to quit and replace with Tegretol.How do you open a discussion please? Can you get away with just dropping 25mg for a month and replace with Tegretol and how to do it? So many questions; so little time. Best wishes to all
Doc told me it was very dangerous to just start taking less of any of the medications because it can double the side effects if done incorrectly eg double the pain as well. Go see your GP for advice on that. I got no side effects from Tegretol except dry mouth and a bit fuzzy in the brain these days. The lyrica makes me fall over but does not seem to help the pain much for me. I will try to get back to you asap after the op. I too am FED UP. Strangely, mine improves if i lay on my right side. Why? Um, as for opening a new discussion, the sidebar on the right of my page says "start a new discussion" with a green box around it. Do you not have this? Its not near the top of the page, its down a bit.
Doc told me it was very dangerous to just start taking less of any of the medications because it can double the side effects if done incorrectly eg double the pain as well. Go see your GP for advice on that. I got no side effects from Tegretol except dry mouth and a bit fuzzy in the brain these days. The lyrica makes me fall over but does not seem to help the pain much for me. I will try to get back to you asap after the op. I too am FED UP. Strangely, mine improves if i lay on my right side. Why? Um, as for opening a new discussion, the sidebar on the right of my page says "start a new discussion" with a green box around it. Do you not have this? Its not near the top of the page, its down a bit.
thanks Colin. accunpcture is certainly a thought bit i just havent got around to it yet. let me know if it works please.
that is the one im counting on, i don't want injections and all the like as i have read all that makes it worse and comes back after a couple of weeks/months. this has seriously messed up my life, im a prisoner in my own home and im upping the drugs mostly myself and at the moment i couldn't care less if i overdose, i have tripled in weight and smoking, my hands can't stop twitching and i can't get my boots on as my feet are swollen, i just can't explain how i feel, im lucky as i have this one both sides! i have an appointment with neuro next week and boy is he getting it!
I understand your frustration. Here is my story. I hope it helps you to understand about medications and treatments.
I was first diagonised with TN in 2000, however for several years before that I had pain in the front teeth in my lower jaw. Also, when in my twenties I had a bout with Horton's cephaligia (extreme pain inn my left eye), and in my 50's I had Bell's Palsy on the left side of my face.
Once I was diagnosed I was given tegretol (over the years I tried other medications, but tegretol was the only one effective). Eventually, I was taking so much tegretol that it was negatively affecting my kidneys. Additionally, I started having extreme break-through pain. I had (MVD) micro-vascular decompressio with a craniotomy. I had complete pain relief for 5 years. Then the pain came back. I had a second MVD and had complete pain relief for one year, then the pain came back. I am currently taking Lyrica, but I am having breakthrough pain that has been excalating. The surgeon tells me I am no longer a candidate for MVD. I am not crazy about the other procedures such as ballon compression, radiation, gamma knife, etc. but I thinking about Percutaneous Stereotactic Radiofrequency Rhizotomy (PSR), Also, I am hearing about research in a therapy called (PNS) peripheral stimulating electrode implantation. I have to do something pretty soon because it starting to become hard to talk. I'll report back hear when I have more information.
By the way, I am an American living in the Seattle, WA area.
Thanks for that Cary, you've been through the mill and back by the sounds of it.
I've only ever heard people's regrets with gamma knife such as permanent half tongue numbness and other parallings affects. I think you'd know more on these issues?
In your opinion was 5 years pain free worth the op even though it came back? It sounds worth it to me.
Hi cary
Thank you for sharing your experience with the MVD treatment - you certainly have been through the mill and are still looking for relief. That's tough! I'm a novice at this TN misery, but am very interested in the treatment side of things, should I get to that stage.
Would you give the reasons why you are not attracted to ballon compression, radiation, gamma knife etc.? Is that from research or second-hand experience of those you know?
Thanks again for your message and best wishes with the treatments.
I live in Kent, England. Take care. Colin x
I would absolutely do the MVD again, even with only 5 years pain free, but it was no pain,, so yes it was worth it. I chose MVD because the success quotient was about 85%. I did it a second time with hopes I would get another 5 years, but alas I only got one year. I would do MVD a 3rd time, but I am no longer a candidate.
Have you heard there is research into DNA.(check out the March 2015 Naples Science meeting)..here is a link
http://www.facingfacialpain.org/
I have been doing research over the years. The reason I am not attracted to some of the treatments you mention is that the success rate is very questionable. On the other hand I may have to make a choice soon if this episode does not quiet down, and so may turn to one of these treatments. There is research going on into the possibility that their is an inherited piece to the mystery of TN. There could be something in one's DNA that makes them prone to TN. At this point it is just a theory but you might be interested in the Facial Pain Research Foundation that reported on the March 2015 Science meeting.The report has the names of the scientists and researchers looking into DNA and TN. I hope your TN is manageable and I hope this information helps you.
Thank you, Cary.
My maternal grandmother suffered from acute face pain but it was never identified as anything specific at the time. Like so many people of her generation and previous generations, little was known about many of the disorders that we understand today. It could be that I've inherited an allele from my mother's side of the family and one from my dad's! Bingo,they've met up in me.
Anyway, thank you so much for the references - I will certainly research into them, while I'm still relatively pain free, and report back anything that seems relevant.
Keep in touch. Colin
Just saw the last two comments about other people in the family having had TN. My mother had it for many years. After my dad died, mum moved in with me and, coupled with the loss of my father was enough to send her to her bed most of the time. I am just applying through the Freedom Of Information Act to a couple of the hospitals in town to find out exactly what operations she had. I think she was on 5oomg a day when she moved in with me but i assume that progressed over the next 6 years until her death. Researching that also