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
Bless you, I wish I could help but all I can do is say I wish you well. I understand your pain and wish it away for you. I hope you get some rest as that will keep you strong. please let us know how you are doing
There are two options for you. One is to have MVD surgery. It is not a big deal and I have had it. The surgery did not find any blood vessels touching my trigeminal nerve but, in most cases,this surgery is successful. I also had sterotactic radio surgerery (SRS). This is radiation and it worked for me. The first session lasted for about 1 1/2 years. The seond session hs lasted for several years and I m still in remission.
Thankyou for your advice, I was offered an Mvd years ago but because I don't have TN constantly, like some poor people do, it was a big operation to have and I decided against it . I also suffer badly from abdominal adhesions, and over the last two years I have had some surgery to try and correct it, I have also had an abdominal hysterectomy, and ovaries removed. I suffer daily with chronic pain from that, and now TN has decided to pay me a visit! I don't know how much my body can take! If it's still bad tomorrow I will go to my dr and see what she can suggest. I have all this and I'm 41. I'm also in a surgical menopause so have issues with that as well, sorry to complain a lot , I'm just feeling low because of it all. Thanks again for your reply xx
I also suffer from TN for the past 12 years. The first five years was not bad. It comes and goes within days like yours and to be honest I didn't know what it was. I thought I had a tooth ache and went to several dentist and they said nothing was wrong after looking at Xrays. Of course when I went to them I no longer had the flares. It wasn't until 2007 that it came back with a vengence and stay longer and longer. My remission seems shorter and my pain got worse and worse. For the past 3 weeks it hasn't left me yet. I can't sleep, eat, smile, talk. I went to my neurologist today and begged to her refer me to a neuro surgeon. She agreed and ordered blood work, MRI and MRA. I was on Trileptal 300mg twice a day. The was heaven because it worked right away. No pain at all! However, after 7 months pain free the TN came back with a vengence. Today my neurologist prescribed steriods, and Lyrica, but so far it hasn't done much to reduce the pain. I spent all day at the hospital today getting all the tests done. We are trying to schedule an appointment with the neuro surgeon.At this point I do not care what kind of surgery they perform on me as long as the pain goes away. However, I did a lot of research on Gamma Knife Radiosurgery and would prefer that surgery. I will keep you posted on the outcome.
Yes please do, I have been like you, backwards and forwards to the dentist and doctors. In the end I just gave up and accepted that I have this, and always will do. 25 years later and I still have it, it's not going to go away permenantly, but the flare ups are definitely getting worse. I had about two hours sleep last night, so today is just a right off, I will prob be in bed most of the day. One side of my head just feels like it's on fire this morning.
I hope you get the answers that you need, and are treated for this horrible, horrible condition xx
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.
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.
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.
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
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
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
This is an update to my previous reply to Tam41. Please read above reply as this is a continuation. I went to my neurologist crying because I was in so much pain. She referred me to a neuro surgeon that I will see next Tuesday. I am ready for any surgery. At this point I do not care, just take this pain away.
Anyway, here's the good news I want to share with everyone. Yesterday the neurologist prescribe a steroid pack called "MethyIPREDNISolone" that I have to take for 6 days. Also, prescribed a pain med called "Tramadol-HCL 50mg". She also switch my med from Trileptal to Lyrica. I took all these medications as prescribed starting at 4pm and went to bed. Woke up at 5:30pm and felt the pain subsided about 30%. By 10% the pain subsided about 50%. I don't have that stabbing/electrical shock, but more like a major aching in my gum, which feels like a thousand ants are chewing on my gum. Anyway, I went to bed and this morning my pain subsided about 80%. The achingness to the gum now is managable. I am able to talk, smile, eat, walk normally instead of super slow because it hurts just to walk. Well, it in now 12:20pm central time (I'm in Houston, Tx) and I haver zero pain at all.
For a temporary fix maybe you all can ask your doctor to prescribe the steroid pack. I think that is what helping me the most.
I'll update you all about progress, especially after surgery. In the meantime good luck to everyone. This is a horrible disease. I pray to God that there will be a cure for this.
I feel your frustration with what life has handed you as I have followed exactly the same path with adhesions, complete hysterectomy and now 7 years post menopausal at 43. however in some ways I am fortunate that my TN has arrived only within the last year. however it does feel like ' yeah go on kick me while I'm down'!
and please don't feel you are moaning. this is the place to let it out because as I have found with all my medical issues in my life that generally people around you do not understand. But here people do.
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...
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.
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.
Thankyou, it's nice to know people understand. Adhesion pain is constant, and barely treatable, I had them operated on a few months ago and they are back worse than ever I have been to the drs with my TN and he's put me on carbamazepine, if it doesn't work or comes back worse, I will be referred to a specialist, but I'm really not keen on another operation!
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
