To ask for positive Trigeminal neuralgia stories

[Sickofthispain14]

I've been diagnosed with this condition. Had never heard of it before. Everything I read on Google is grim and making me panic awfully about the future.
Please, if anyone has any positive stories where they were diagnosed and just had one flare up, could you post them.
It would really really help me right now

My mum found acupuncture helped for quite a while. Might be worth a try?
I hope your pain is under control at the moment.

Ok , are they 100 per cent sure it’s TN? If you are the same lady who posted over Xmas re this I shared my experience which was that I though it was TN as did my doctor but it was a badly fractured undiagnosed tooth. I swear the pain was horrific. I suppose I’ll never know if the two were linked but I’ve never had any pain since?

Hope you get some positive posts , I know it does say on the TN website that it can happen just the once.

Thought not though. Sorry

My mum had this for years - and it was horrific for her. But, hers hasn’t flared in well over a decade. The thing that made a huge difference to her was working part time then retiring, because she was less stressed and so didn’t clench her jaw or grind her teeth at night any more (those things were exacerbating it). So I would say anything you can do to reduce stress will probably be a good thing.

You have all my sympathy OP. My mum described it as the worst pain she had ever experienced and when it struck all she could do was lie down and cry til it passed. It was truly awful. I really hope this is a one off for you.

I know someone who has had HUGE benefits by using an app called Curable - it's got her off loads of drugs she's been using for years. And changed her life completely.

I've not look at the app personally, but I keep meaning to - she really really rates it.

I've also had some luck with acupuncture but you have to do it right at the beginning of the flare up or it doesn't work properly. Once it really kicks off there's no stopping it but it does disappear as quickly as it came. The lack of positives is pretty much because there aren't many. It's not called the suicide disease for nothing.

I have a positive story. I am currently in remission. 5 years now. It does happen. Hugs for now though.

Presumably you are being treated. Carmazapine worked well for. With alternate para and neurogenic. Also try to find your ‘ trigger points’. They’ll be points on you face and head that if you touch will set the whole lot off. Keep warm. , never go out without a scarf on. Once mine was under control I could still go to work etc.. GOOD NEWS mine disappeared for no apparent reason that was about 3years ago. Good luck

Strangely, both my parents have had this and have both been in remission for years. My mother got it about 25 years ago and had it for I think two years. She was considering surgical treatment and was put in touch with someone who had had the nerve cut. Eventually a different consultant put her on amitriptyline and the pain went very quickly. She still takes an emergency supply of amitriptyline if she's abroad, just in case it returns.

My father got it about ten years ago and I think he had it for about three or four years. He also considered surgery, the balloon compression option, but was treated with carbamazepine. The pain went slowly over a period of a couple of years. He very occasionally has a "flutter" that reminds him of it, but nothing like the intense pains he used to have. I remember he spent some time on forums for discussing trigeminal neuralgia, but in the end decided that for him it was unhelpful to read the accounts people were posting - as they naturally tended to be people who had had very hard times with it. Cold and things touching his face (such as washing) were triggers for his pain.

I'm sorry, OP, it's a horrible condition, and I hope you are having support and treatment. If you have children, please also think about the effect on them if they see you in uncontrolled pain - I'm sure you would think about this and there may be little you can do, but I remember how hard it was for me and my sibling when my mother had it. Best wishes.

I have had TN twice. No pain killers touched it and I was in such a state I worried I may accidentally overdose while trying to rotate the different types.

My doctor has now prescribed Amitryptiline but just one per day. Since having the tablets I have not had a flare up but praying they will help.

actually someone at work had success with chronic pain and I’m sure it was something like mindfulness, I’ll ask him tomorrow. I was a bit 🤔 but he was really adamant it had helped.

Good to see some positive stories.

I was also wondering if you were the person posting over Christmas, although I think they had a fairly dismissive GP unfortunately.

I have TN, but have been symptom-free since surgery many years ago. There are treatments, the hospital that operated on me was a specialist neurological centre. Are you on medication now?

FamilyRefugee and I possibly know the same (utterly fabulous) person, I think.

Thank you everyone who has replied. I seem to remember reading another post over Christmas but I didn't post it. I was fairly out of it then and actually spent most of Christmas day in bed due to not having sorted my levels of pain relief out. I'm on Carb...something epilepsy drug and it does seem to be working but I'm still trying to work out my triggers so do have some level of pain every day but it is manageable without codeine.
I'm waiting for a neurology appointment and also have a maxillofacial appt as my dentist referred me when he thought I had TMJD. I'm going to go to that to see if they can offer a view on it.
I've basically had this come out of nowhere. 9 weeks ago it just struck me down and I feel like a shell of my old self. I do have kids and am trying to limit telling them about it or letting them see me in pain. I want to protect them from it but my youngest has already told his support worker in school that he's worried about me.
Whoever said to avoid the chat groups about it, I tend to agree. It scares me just reading the horror stories and I figure those people with positive outcomes have just left the group or stopped posting so I'm going to avoid from now on.
Mindfulness etc I think are all great ideas and I've been trying to get out and walk and breathe deeply etc so it's an extension of that I guess. I will also look into acupuncture.
Your replies really have helped so I thank you again

@MoorMummy so who discovered your tooth issue? Was it dental hospital or normal dentist?

An aunt had this and suffered dreadfully. When she retired, she was brought out of retirement and posted to Ethiopia for a while. I don't know if the very different life and climate contributed but she's had 1 recurrence in what is now 36 years.

Amitriptyline, quitting my high-stress job and getting physio on my neck is gradually sorting mine.

I had two or three bouts, as you say it is horrendous and the information online was not making me feel any better but it seemed like I had the right diagnosis. I had amytriptyline, went to ENT twice a year, had x rays etc. Then at a routine dentist appointment the dentist decided I had an abscess behind a tooth that I had had problems with before. They removed the tooth and it was really really weirdly long - it turned out whenever I had a cold and my sinuses would swell, they would push the nerve down against the root of the super long tooth. I've never had anything other than an odd twinge since. Hopefully yours could be similar

Carbamazepine probably, keep taking it regularly as it needs to build up to an effective level in your bloodstream - it's not an instant acting painkiller (as you probably already know only too well).

I had/have it. Carbamazapine is the first line of treatment, and if it works for you fab.. unfortunately it made me vomit! I then went on HUGE doses of pregabalin which spaced me out beyond belief but gave me blessed relief from the pain.. I was as close to suicidal as I can imagine before the pain decreased.

Eventally I was able to switch to gabapentin (cheaper but as affective) and lower the doses. I am still on it now. I have no pain at all most of the time, but occasionally a sharp wind sents off a little warning pain. If I get a cold it comes back (but then goes again)

I currently have what I suspect is a tooth abscess and I am terrified that dental treatment will set it back off. I lost two teeth unecessarily before my TN was diagnosed..

BUT I am 99% pain free and have been for 4 years. It is the worst pain there is (known as the suicide disease!) but it IS fixable these days. Hang in there!

I had posted about this over Christmas after having a horrendous time. The 2nd GP prescribed amitriptyline and I took one straight away and went for a sleep and when I woke up the unbearable dragging stabbing pain had lessened. Took another that night and the next morning I was pain free. I continued taking them for 3 nights just incase.

The GP didn't say anything about me being diagnosed or investigations so ill leave it til it happens again.

Anyway just wanted to share my experience with amitriptyline, nothing else had worked including naproxen 500 mg, Co codemol 30/500, hot water bottle etc. Hope you get some relief soon op

I had it for nearly the whole of my pregnancy. Never had it before and haven't had it since giving birth. But I didn't enjoy my pregnancy at all because of the awful pain in one side of my head and face. It got so bad, just having my husband speak/having the tv on etc made it worse. I ended up at the Drs in tears because the only thing I could take was paracetamol which obviously didn't touch it. I had reflexology sessions which really helped and a found holding a hot water bottle on my face took the pain away slightly

Again, thanks for the replies. Every positive story is a relief to read. I'm not sure how to reply individually as I don't know if it works so just to say that I will bear amitriptyline in mind if the one I'm on stops working.
To the poster who had it during pregnancy, that must have been truly awful.

Just one episode for me a few (6?) years ago. Took a while to figure it out, misdiagnosed as sinus infection and I spent a lot of time at the dentist too but eventually figured out what it was after a really bad night that involved an emergency codeine prescription and a trip to a 24 hour pharmacy.

My GP put me on amitriptyline, I seem to remember being instructed to gradually increase the dose by taking more tablets each day. I took them for a couple of weeks maybe and the problem has never reared its head again. I hope it’s the same for you.

I am not sure if what I had was TN or not. it is what my GP suspected when I described my symptoms (having lived with regular flare-ups for years as a previous GP who I mentioned it to had no idea) and I was prescribed some powerful meds but I never took them as I was TTC at the time and the side-effects in terms of possible birth defects were horrific.

However like some other PP I haven't had a flare-up for ages. having a less stressful lifestyle has probably helped but the thing I most noticed was that flare-ups were strongly linked to getting dehydrated so I do always take care to drink plenty of water these days.

The fact that it has gone away without any treatment other than drinking more water and reducing stress does make me wonder if it was never TN in the first place though.