Living with long-term Trigeminal Neuralgia.
Posted , 5 users are following.
Hello Everone.
I'm 74 now and have suffered with T.N for over 20 years. If you're young and strong there's every chance that medication or surgery will help you, but in my case my consultant advises that any further surgery could worsen my condition . I've become imune to medication and no longer have remission periods. I rarely leave the house and have to rely on my family for anything outside the home. I can function within the house but have long periods of being unable to speak, I don't wash the right side of my face, can't clean the teeth on that side, can't go outdoors in even the slightest breeze,.There are other symptoms and I live in constant fear of the lasting attacks which I've experienced in the past.
One of the worse things is trying to keep all this from a loving and concerned family.
I'd welcome input from other long-term sufferers of this darned condition.
Gill
2 likes, 11 replies
patricia64722 gill32586
Posted
Hi gill
i too am 74 yrs old . At the moment I have 4 years without pain since I had a ballon compression in 2013. I suffered for 16 years.. It is wonderful.
I relate to everything you have written. I don't wonder they call it The Suiside Disease
I wish you all the best
Patricia
gill32586 patricia64722
Posted
Thanks so much Patricia. I'll certainly ask my neurologist.why he has never suggested this. I've had four thermocoagulations under anaesthetic ( one has tmade this even worse ) but he doesn't want to do MVD. I have the distinct feeling feeling he has now given me up. I've been with him so many years he seems disinterested now. I'm just trying to live with the darned thing now. I also can identify with those who call it the suicide illness.. Not good., is it? I do hope your condition continues. Fingers crosse for you and thanks for being so helpful and staying on this website even when you're so much better.
Gill
patricia64722 gill32586
Posted
when I had my balloon compresion they also knocked me out.but I went home the same day. Where abouts do you live?
Patricia
gill32586 patricia64722
Posted
Hello Again Patricia,
I'm in Wakefield, West Yorkshire. My Consultant neurologist is at Leeds General Infirmary (LGI)., a teaching hospital. I'm sure you've found out, as I have, that most GPs don't have a really have a good understanding. Even when I recently passed out during a pain episode, the hospital doctors also seemed a bit lost about the condition.. I suppose we're quite a rare breed and can't expect them to have expertise on everything but it does makes you feel frustrated. Understanding helps a great deal, doesn't
it . I've encountered the comment 'Oh, I've had that too' more times than I care to mention..
Are you alsoin the Uk.
Gill
patricia64722 gill32586
Posted
Yes I live in Selby near York. I was referred by my gp to go to the pain clinic in York. A dr Armstrong recommend the balloon compresion
Thank goodness she did.
I hope you can get yourself sorted
Patricia
michael64483 gill32586
Posted
I am 65 . Suffering for over 20 yrs. Had MVD surgery in 2002. Gamma Knife in 2010 and again in 2014. Had failed PSR surgery in Apr 2017, pain in remission now.
?300 mg Tegretol daily & 300 mg Neurontin too. In past, I always quit meds after surgeries so it may take awhile to build immunity to them. I get so bad I can't
?eat, drink or swallow and have to be fed liquids by IV and food too. Then it
?suddenly improves. Docs from several states have said they can do one more
?gamma knife it pain gets bad enough again. When it has been at worst I come
?close to starving and frequently lose 15 pds in 20 days. I can't brush teeth or even swallow when pain gets bad. Fortunately I am known to go into remission for several years at a time.
gill32586 michael64483
Posted
Hi Michael,
I'm so sorry to hear of your history and prognosis. I too have had this for over 20 years and completely sympathise with you. This is such a difficult condition to deal with in daily life. It's a constant worry about the return of it and when it will overtake us again.
I find one of the most depressing symptoms is the sheer randomness - you never know when the pain is going to strike and how severe the attack will be. Although .I've never been pain free for the last 10 years or so, at times it has been livable with but at the moment I've been strugggling for the last 9 months and am now housebound. I do hope this remission you're experiencing will continue..Anything's possible with this thing and we have to try to be thankful for these periods.
When I'm really bad I always try to think of those have this condition and who do not have access to treatment. There must be many in this disturbed world of ours. I do find it difficult not to feel sorry for myself but I keep trying. At least we have a roof over our heads, warmth when it's needed and enough food to eat..
You seem to have tried to research who might be able to offer you hope and must feel upset that they have all come to same conclusion. I've read that Radiofreqency Lesioning can be repeated several times. I've had this 4 times but my consultant won't do it again. I just wondered if this is what you're caling PSR and if you've tried it.
Hoping your remission continues well into the future. You've certainly suffered enough.
Gill
tanis65622 gill32586
Posted
My heart goes out to you. I am on the beginning of this journey. I am new and am terrified and nervous most of the time. I can only say you have my thought and positive energy coming your way. You must be a very strong person after these years living this,way. My heart hurts for you. I am 44 and got diagnosed about 3 weeks ago and I would not wish this he'll on anyone. I've had rheumatoid arthritis for 15 years and it is not even in the ball park of this kind of pain. Live for those moments in between and I hope you find peace. I know pain suffering long-term and it is very hard on your mental health. Try to see a therapist or counselor if you haven't. Best wishes to you.
gill32586 tanis65622
Posted
Hello There, I started a discussion for 'Long Term TN' and you should not be scared off by this. Listen to me! Many of us have been cured or given great relief and are not long term. I worry about those who have been newly diagnosed and read some of these posts. I'd be despairing myself. Remember that the many who have, or have had T.N and have been helped are not likely to to join and some who have been cured will just forget about the site. We have to be grateful to the few ( read army's post) who visit to help and support although cured.
We don't know what treatment you've been given but there are many alternatiives if it's not helping. Surgery, various day care procedures, and some medications which you may not have been given..
I suggest you join the FPA - Facial Pain Assoc.. They have a wealth of help and explain in detail the various alternatives to T.N. treatment.
If you're new, just don't give up. We're always here and just to know that others completely understand what you're going through does give you some comfort.,
Gill
army183 gill32586
Posted
Hello Gill and other contributors.
I'm with you all the way with sympathy and understanding of this pesky condition. A couple of things stand out for me in your message but maybe I have misunderstood.
Age: there is NO barrier to effective treatment including MVD surgery because of age.
Persistance: you should not have these terrible occurrences over so many years without some proper intervention.
I could write pages about this but currently I'm stabbing a large finger on an iPhone screen, so I'll just say this: I had grim TN type 1 for about 3 years and showed absolutely every symptom you have described. My neurosurgeon (in Cambridge) carefully advised on the chemical and procedural options that were available to me. As my condition was rapidly getting worse and my high quality MRI confirmed a classic arterial compression at the Trigeminal nerve root, he said that MVD would offer a very good option. I took it up and have never regretted it. I was 69, overweight and on BP tablets but that was of no negative impact.
My surgeon said the eldest patient he had receiving MVD was 75. There are other interventions than MVD of course.
I would be a bit concerned about the level of care you are getting clinically. You don't have to be "done" by your local neurosurgery team at all you can even get your GP to refer you to a centre of excellence that you prefer. Just scan the hospitals and you'll soon find surgeons with skills and experience in TN. You can go where you like. If you feel uneasy about it, your GP can refer you to any consultant anywhere and you can pay for a consultation only - that would be about £250 at the most. The rest of treatment can be on NHS, because you are already in the NHS system anyway. You'd just be paying for a private consultation. I did that to accelerate progress.
I hope you can get some relief and progress soon, you've been waiting long enough.
Keep safe
Big D
gill32586 army183
Posted
Thank you so much for your help and support.
I'm touched by the people who have had good results from the treatment recieved and yet still take the time to visit the site to help others suufering this devastating pain..
I've had theree MRI scans over the years and been told that the nerves affected do not show clearly enough on the scans and would require deeper and more invasive surgery than usual. Considering my age and general condition it was not advisable. I do wish that MVD had been performed in the early years of diagnosis.,
However, I've certainly taken on board all the excellent advice you offered. You're quite right ,I do need to be more assertive. I have found it difficult because I know the poor guy is rushed off his feet. He has always seen me personally although there have been other less qualified docs in his clinic . It's really difficult to get an appt. and I always see young brain-damaged people. I've felt that they are more worthy of his time .
I'll look into alternatives you suggest and will certainly ask my GP about changing my consultant. There have been various good suggestion from other on this site , one quite lo near to me. All help is appreciated.
Thank you again - and I love your description of the stabbing finger! Anger caused by concern. Made me laugh and cry at the same time
Gill