1. Community
  2. Brain and nerves
  3. Trigeminal Neuralgia

Longtime sufferer with TN , really bad flare up, advice needed :(

Posted , 19 users are following.

tam41
tam41

I have suffered with TN for 25 years, luckily for me, I only have flare ups every so often, maybe every three or four months lasting for around five days. However, I am in so much pain right now and don't know what to do. 

My TN started when I had all four of my wisdom teeth removed in hospital. Over the years I have tried different medications and seen a few different specialists. The problem has always been, that by the time I get an appointment with a consultant, I am out of the flare up and have no pain. I have been offered an Mvd , but I was scared and as I was in remission at the time, I said no. I have managed all these years to just accept it when I have a flare up, and just know that it will go and I will be ok.

my last flare up was quite bad, and this one I am having now is horrendous, I am taking gabapentin for a seperate medical problem, and I did think it was keeping my TN at bay as well. Yesterday I felt very uncomfortable at the base of my neck, sort of behind my ear, I felt as though something was swollen and it was sore, today I have had the very familiar TN pain, but it seems worse than ever. I have took ibuprofen, which usually works, and I also have some oramorph for my other medical problem, even this is not working. I can't eat, talk, or stand noise right now. My family want me to get the dr out or go to a and e, but I really don't see the point, I have had this for too long, I won't have surgery for it, and what can they possibly do about it!? I just need to sleep but I can't see that happening tonight, if it' gets much worse, of course I will go, what are people's experiences of this? Is it really worth a visit to a and e? Or will they just treat it as a migraine or another type of headache! I'm sorry if I have moaned a lot, I just really need some advice of people who understand. Right now, I have the lightening strikes in my head and down the side of my face, it makes me cry in pain, but crying then triggers another attack! I just wish it would hurry up and leave me alone again sad

1 like, 34 replies

34 Replies

Prev Next
  • sharon33606
    sharon33606 tam41

    Posted

    Hi Tam,

    think you you must seek help I went to A &E with one of my bad attacks. Keep on at your GP. Not all of them have a clue about this condition. The original GP I saw didn't but then fortunately the next one I saw nailed it immediately.

    Best wishes

    Sharon

    • tam41
      tam41 sharon33606

      Posted

      Thanks Sharon, how did they treat your TN then? I am thinking about going back and asking for a referral again, I just have other medical issues going on and don't know how much more I can take! Hopefully this will have gone in a couple of days, then returns just to let me know it's still there! X
  • chardew88
    chardew88 tam41

    Posted

    Hey

    Your TN sounds really similar to mine. I only have attacks every few months lasting for a few days but then few days are sheer torture. I dont sleep and I just cry! I take tegretol which helps a bit but I have 2 young children so the side effect of making me tired means I cant tske I high dosage. I find though that having acupuncture helps. Albeit for a short time but enough that I can sleep thus making me a little more tolerable as the pain seems so much worse when your insanely tired.  I also brought an e-acu pen which wors similar to a tens machine and acupuncture an this is worth its weight in gold.. it temporarily numbs the nerves an takes the pain away so if u can get hold of one of them definitely try it. Its helped me more than any of the drugs ive been prescribed and like you im reluctant to have any surgery mainly because im only 25 and most options my neurologist suggested are ones id have to have repeated so I want to hold off as long as I can bear. I hope you find something that helps soon as I can completely sympathise with what your going through. 

    Good luck and take care x

    • tam41
      tam41 chardew88

      Posted

      Thankyou, I remember when my children were only little and trying to cope with a flare up at the same time, it's impossible! I can remember lying on the floor , curled up in agony and they thought I as playing a game with them! I tried tegretol once, but I think I had a reaction to it and felt terrible, I take gabapentin for another medical problem but it seems to keep my flare ups away for longer, they are longer apart but more intense and painful when I have one. I will look into the pen, thankyou and I hope you find a way of coping with your flare ups x
  • cindy67932
    cindy67932 tam41

    Posted

    Hi Tam,  I feel so bad for you, that is to long to suffer with this illness, Mine is just new, only a few months so I am scared of how long this goes on,  How do you do things, how do  you work.  

    So sorry for you.

    • tam41
      tam41 cindy67932

      Posted

      Hi cindy, yes it is a long time, 25 years and I started with it at 16 yrs old. So most of my life, luckily for me it is not constant, just every few weeks/months. Have you seen anybody about it? I don't work at the moment as I have other medical problems and have not been able to work for two years, I really don't think I would be able to work when I have a TN flare up now, they are a lot more intense than they used to be. I just want to be in bed, curled up in the dark and lie still. I sometimes can't even talk without getting the horrible pain. I am considering asking for a referral to a specialist, but I have a lot going on at the moment, and am already attending a pain clinic for a seperate illness, I might mention it there next time I go, I do hope you get some form of treatment, it is very scary and so cruel as well x
  • JFHS
    JFHS tam41

    Posted

    Hi..

    I haven't been a sufferer myself, but my mum suffered for many many months. She was put on medication which was increased and increased as the pain got worse, to the point she slept most of the day and didn't enjoy life at all... She stopped eating, smiling, laughing or talking..

    I started to do a lot of research and eventually went to convince my mum to have the MVD op-but she had already decided to have it as her pain was so unbearable. And this was the best decision she ever made! Her recovery was very good and just the fact that she could talk again (straight away!) without any worry of being in pain was amazing... This was also just before my wedding which was just fab!

    Unfortunately for my mum the TN came back 6 years later-which can I just say is so very rare. But she had no question in opting for the op again.. Which she had this winter and is now pain free again. The surgeon is 90% she will be forever.. One down side is she has lost feeling in a small section of her face but in her words, 'this is so much better than pain!' 

    I don't know how the pain must feel but to see my mum (a pretty strong character who doesn't suffer pain easily) suffer that much was pretty horrendous... I would only ever recommend this surgery as I really don't believe TN will ever leave you-just come and go, then get worse and worse.. 

    We live in the South East and my mum went to St George's hospital in Tooting, and had an amazing surgeon... I know this is a big decision so I can understand your hesitation...

    I really hope you get done pain relief soon..

    Kind regards Jo 

    • laurel3865
      laurel3865 JFHS

      Posted

      Hi JFHS,

      Your mom sounds a lot like me. I am also a very strong character because I do not want to affect people around me. However, it got to a point that I no longer can hide my pain. I am scheduled to see a neuro surgeon next Tuesday in Houston, Tx. I've research on MVD and pretty scared about that surgery, but willing to do it if that's what the surgeon recommend..I am glad to hear your mom is feeling better.

      Thanks for your input in this discussion.

  • Guest
    Guest tam41

    Posted

    Hi Tam41,

    You have my sympathy with this pain I know how you feel.

    Briefly, my experience goes back over 20 years. I had the MVD procedure back then and it was very successful because the surgeon was able to find where the blood vessels touched the trigeminal nerve and sepatated them. I had no after effects and everything was perfect for most of 20 years. Then the TG returned and I went on tegretol which made me sick. Later I had a treatment of REIKI which seemed to work and I was alright for about a year. When it came back again I had another REIKI treatment but it did not work so went to the doctor who put me on Lyrica. This had little or no effect and the pain grew worse. After about two months of pain I decided to get the surgery again which was done last January. This time (it was the same surgeon as 20 years before) he could not find the exact location of the problem and it ended up that he did a rhizotomy (cut the 5th nerve) . This was successful insofar as the pain was completely gone.

    However, the after effects are horrible. I now have a "dry" left eye which feels like it's full of grit all the time and feels "jumpy" making it hard to sleep. I have a constant soreness around the left side of my mouth, my lips feel numb and have no feeling in the left side of my mouth making it difficult to eat and very little taste.

    I am not suggesting that anyone should not have the surgery but if I had the choice again I would be very very reluctant and would definitely try every other possible treatment first, including alternative medicine and faith healing.

    Sorry for sounding negative, I do not mean to and just wish you and all TN sufferers the very best.

  • tam41
    tam41

    Posted

    I went to my gp yesterday, I'm trying the carbamazepine, although I'm sure I have tried it years ago. If this doesn't work or if my next flare up is worse, I will be referred to a specialist, I just don't want another operation. I've had my fair share over the past few years! But when I'm in the middle of a bad flare up, I think I will have any surgery just to get rid of it! Today I feel like it might be going, although I thought that yesterday, but as the day went on it just got worse. Fingers crossed it's leaving me for a while now. Thankyou for your replies, very helpful. Xx 
  • sharon33606
    sharon33606 tam41

    Posted

    Hi! Tam, I had a very nasty reaction to carbamezapine and was then put on oxcarbamezapine and helped so much with no adverse reaction.thinking of you.
  • patrice95661
    patrice95661 tam41

    Posted

    please try high dose b complex daily. my attacks have since stopped since taking them as advised by my doctor. i i still cannot believe how suddenly it stopped since i started taking it. i went from about four  200mg tegretol daily to none. i know everyone is different but it's worth a try. 
  • aniLhamo
    aniLhamo tam41

    Posted

    HI, fellow sufferer,

    My sympathies.  I have just had the worst flare-up ever, and completely understand the need to moan. Just had the worst flare-up ever and it was not ending, so

    out of desperation, tried a chiropractor who was highly recommended.

    Within a day, the pain dropped from 10 to 3, and over the next five days,

    it has been at 0-2.  Maybe it has overcome the flare-up.

    Is good chiropractic care available to you?  Not the old forceful adjustments, but the more subtle ones that adjust cervical vertebrae, facial bones, and skull bones.

    It might be worth a try.  

    • patricia_93319
      patricia_93319 aniLhamo

      Posted

      Hi all, 

      I have had TN for about a year or so now, following a bout of Bell's Palsy. Has anyone else developed TN after having Bell's Palsy? 

      I also go to chiropractor, because my C3 gets so turned / twisted and it actually throws my skull off kilter so to speak. When they adjust, it takes the rest of the day but it subisdes almost completely. I haven't had too bad of experience with every day; however when it comes to my falre ups... i get them about every 3-6 weeks - they are horrendous. it is a mirgraine X 30. I am on carbapenzine (or however you spell it), and it doesn't seem to be working at all. I'm on 300 mg twice a day which i saw worked for some, but it hasn't for me. I go back to the Neuro on tuesday 11/10 to see if there are any other suggestions or things i can do. I have noticed that alcohol is a HUGE trigger for me. I cannot drink anymore. I have no clue how that can be related, but that is a big reason for my flare ups (even if it is 1 glass of wine, or 1 budlight). However now, even without alcohol, the flare ups are coming more frequently. I just had one start yesterday and is horrible today. But I don't knoy why. Does anyone know if stress can be a trigger, or emotional stress (i lost a close friend 2 days ago)?

      Thanks,

      Trish 

Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.