Will I ever go into remission with TN?

Hi Big D, Thanks for your reply. Being a big bloke myself I think I could tolerate a larger dose than what I'm on at the moment too! I'm honestly not sure if I've got Type 1 or 2. The pain is constant (a bit like having a toothache pain 24/7) and I don't get flare ups as such. Does that mean I would probably be Type 2? I'm only just finding out about this. I havn't even been diagnosed as having TN yet, but two doctors seem to think it is. That must have been a relief for you when the neurosurgeon told you about the 'pesky artery'!! Perhaps I'll get a definite answer soon. I have to see a Maxillo-Facial specialist this week but I'm not optimistic they will find anything. It would rule out TMJ though. Not sure if you live where I do but my nearest hospital is the Conquest. I live in Hastings, UK. I have x-rays from my dentist if the examiner wants to see those this week. My dentist has been unable to find anything wrong and refuses to remove what she says are perfectly good teeth. She only found evidence of grinding. I'm not sure if the MRI scan I had last year was a high quality one or not but, according to the specialist, nothing untoward showed up. It's a mystery! Maybe another scan might show something since its been about eight months since I had the other one. Glad to know that you're doing well now! - Steve

Hi,

I am in Hastings too! I had pain for many years and thought it was a variety of migraine as it was focused on my left eye. It was only in the last two to three years that I began to realise it most definitely was not migraine. The pain got more severe, more frequent and began to affect other parts of my face. I have episodes of absolutely no pain at all, anywhere on my face, but then I will suddenly get the stabbing or electric shocks. My triggers are cold wind, eating and a variety of others. I have a confirmed diagnosis of bilateral TN1 affecting all three branches, often a combination of two or all three during an attack.

Since starting Carbamazepine I have been experiencing far fewer episodes of pain. And despite taking precautions to reduce attacks I suspect I will need to further increase the dose of Carbamazepine, currently on 1200mg a day. As awful as it is for you I am soooo glad to know that I am not the only person in Hastings with this hideous disease! 😁

Keep your spirits up and best wishes.

Hi Susan, you're in Hastings, East Sussex, UK? I know there is a Hastings in the USA too. Sorry to hear about the pains you experience. It must be awful. Actually, although two gp's diagnosed me as having TN, I went to the hospital today to see a Maxillo-Facial specialist and he said I've not got TN but TMJ instead! I've been off the painkillers for a couple of days but the pain is beginning to nag at me again. I get these cramps in the jaw muscles which are incredibly painful. I've had to get up at 1.30am this morning because every time I tried to sleep it was impossible. It seems to be when I'm on the borderline between waking and sleeping that it really gets to me. The specialist I saw has given me some facial exercises to do. They're not very clear and I must admit that I've found better ones online. He said there's 'no quick fix' for it, so I could be stuck with it for a long time. Pity I can't just stop using my jaw completely for a week! I've been advised to only eat soft foods from now on. The Carbamazepine was helping to reduce the pain (whereas co-codomol didn't) and I've asked for a repeat prescription of it (higher strength if possible). I hope you will be able to get the higher strength medication as well. I actually live in St Leonards but I work p/t in Hastings for a local charity. I walk in every day. Has your doctor/consultant suggested any surgical procedures to you like MVD? I'm going to start a separate thread sometime this week to mention the TMJ. Do you know if TN is recognised as a disability in the UK? If not, it ought to be!

Best wishes to you,

Steve

Yes, Hastings East Sussex UK! It's a small world really! I think the distinction between TN and TMJ is that TN 1 includes electric shocks, TN2 is more of constant ache with stabbing-like throbs, and TMJ only affects the immediate area of the joint and is worsened by movement of the joint(?). I saw Mr Surwald, and although I don't have TMJ pain I do have a misaligned clicky joint! I agree with you about the exercises, they're a bit rubbish to be honest and I forget to do them! 😁

Today is a good day, very few episodes of pain so far, but I am still suffering from the flu bug. It sometimes seems like there's not right all the time 🤧🤒

I have a very good GP who's prescribed a good combination of drugs to combat the TN pain. It doesn't get rid of it but makes it just about bearable.

TN isn't currently classed as a disability, but should be! It's something to do with the pain being subjective and not easily provable. If someone with a 'bad back' can be disabled surely a TN sufferer with what's widely accepted by the medical profession to be the most painful condition known to man and beast can be classed as disabled!!!

OK, rant over! Good luck with sorting out your pain!

Not discussed surgery, I think it's because of the other health issues I have (possibly Lupus). Surgery might be problematic or trigger flares.

Best wishes

I'm still not sure if I've been diagnosed correctly, I'm sure I don't have TN1 because I don't get the flare ups associated with that. I do get a constant ache and what are like mild electric shocks that go up into my eye area and forehead. It's a sort of prickly feeling. It really worried me at first but I'm getting more used to it now. I used to get clicks too. These were on my right side. It lasted for about a year then I woke up one morning and realised it had gone! I occasionally get a click on my left side when I open my mouth.

It must be awful having the flu bug with TN. Fortunately I've been spared catching the flu or a cold so far. I usually get something around November or December. I know two people who have been so bad they've had to be admitted to hospital (the Conquest). I think they've had that "Aussie" flu.

I'm glad you've got a good gp who is looking after you. I went to my surgery today (I have to queue up at 8.15 in the morning!) but they only had one doctor and one paramedic on duty. I had quite a performance trying to get a repeat prescription for the Tegretol. They said they'd faxed it through to the pharmacy but the pharmacy said they hadn't got it. It was the usual story of one blaming the other. I had to go back to the surgery (for the third time) to pick up the original signed prescription. The surgeries seem to be struggling at the moment. Mine has 7,500 patients on their books!

I think TN is classed as a disability in America and Australia. A petition was set up here to give to Theresa May.

I hope you're not in too much pain at the moment and that the flu is on its way out.

Greetings,

Some of the literature on TN describes a small proportion of sufferers experiencing a constant tingle/burn/ache in between the stabs and shocks. I think your diagnosis is likely to be correct especially as your pain is relieved so quickly by the Carbamazepine. That is often considered as an indicator of TN. Sorry🙁

Currently suffering from a huge mouth ulcer (as well as bugs) which is causing me some pain so will sign off for now. 😟

Ask your GP to refer you to a Neurologist if you haven't already been referred. Good luck.

Sorry to hear about your pain. I'll go along with the TMJ diagnosis for now but the thought that what I have is TN will always be at the back of my mind. I would have thought that Ibuprofen and similar painkillers would do the trick of it was TMJ but they havn't worked at all and I'm having to take the nerve painkiller Carbamazepine instead. I saw a neurologist about eight months ago but he says I don't have TN either. Oh well, its back to my gp for now! In the meantime I'm trying not to open my mouth too wide or eat the wrong foods which might aggravate my condition.

One good thing...I came off the painkillers Friday night in the hope that I would be well enough to walk from St Leonards (Warrior Square) to Bexhill and back on Saturday morning. I was doing it every week as part of my exercise regimen (I drop in on a friend who works in a charity shop too) but the painkillers make me a bit sluggish. I had the stamina this weekend though so I was pleased about that (I last did it three weeks ago). Come Saturday afternoon I had to go back on the painkillers though

Hope your mouth ulcer is healing up. Can't understand why I havn't had any bugs yet. I usually get something this time of the year!

Hi Vicki, I think it was you who mentioned turmeric before. I have the turmeric I ordered and also L-Carnitine. Does it take a while before it kicks in, so to speak? I'm waiting for the magnesium glycinate to arrive in the post now. This was recommended by someone else. I've seen some of the videos about TN on YouTube. I'm sure there are many videos made by people who are sincere but I'm wary of the charlatans who are just using YT to sell their wares or recommend a "specialist" who will fleece them of their money. I suppose its early days for me yet and I'm new to all this

Those other medications are not doing anything for me I'm afraid. I still have to take the Carbamazapine and get almost instant relief from that. If the turmeric etc work for you then fine but I think I'll give them a miss for now. Steve

Hi, yes, I will probably join that organisation so that I can keep up with the latest developments re TN. I may buy the book but being on a low income I might have to wait for a while. At least its cheaper through that link you gave me than on ebay and amazon! My dentist didn't seem to know much about TN otherwise she may have prescribed carbamazepine. It must be awful to have TMJ and TN together as well as the headaches. The funny thing is, since this thing started, it has made me all the more determined to carry on doing the things I like to do in life. I suppose it all depends on how serious the condition is. I have my Maxillo Facial examination tomorrow so at least I'll know where I stand when it comes to TMJ (I hope!). I hope you're having a relatively pain free day today. Steve

I tried a few things and ended up on Lyrica. The generic name for it is pregabalin. If you can't afford it, the original drug is gabapentin. The drug gabapentin is much older and cheaper and tends to be safe. But can make you drowsy at first (takes a few weeks to adjust). The new version is Lyrica and its more expensive but for many of us it makes us less drowsy. It's officially for fibromyalgia (which I also have) and a few other conditions. But off-label it seems both gabapentin and Lyrica can help some people with TN due to it works on the nerves. Personally I've tried nearly every migraine and TN medication out there. At first I tried gabapentin and was overjoyed at the relief it brought! I will never be pain free. I've finally accepted that. But I was in less pain than I had been in a long time. But gabapentin made me drowsy and my neurologist suggested Lyrica since I have fibromylagia. I just wasn't taking anything for the condition because I didn't want to add yet another drug to the list of what I was taking. Now? I'm coming off the other drugs. And that includes also my other migraines drugs as well! (You have to slowly come off of many of them.) So today I'm having flare ups due to severe stress in life can cause TN to get worse (which I have right now). But I'm doing better now than I was in September so I am very thankful. I hope this helps.

I meant to say to you to be careful. TN is still under debate even among doctors themselves on how to classify it and what even determines whether you have it or not. So many are not educated on it. Or think they are but have not read the wealth of literature out there. Be your own advocate. If it doesn't not feel like you are getting the right diagnosis, go with your instinct and don't accept what you are told. Research and show them. Unfortunately you may have to educate your own doctors on this matter. And remember: You, too, may have TN and TMJ.

I also had this tremendous pain & felt the same way. The side effects from the meds are bad. I did a lot of research on you tube & on this web site I found relief without side effects. with Turmeric 800 mg. Pain free for 12 hours at a time. Then I took Carbamazapine 400 mg at night.

I was suppose to go & have scans today then surgery tomorrow that had no guarantee of working. 

I was reading some post on this web site & a few of them found success with acupuncture. 

I tried it just to get free of this trauma. I wasn't totally free of the pain until the 2nd treatment. I did go for the 3rd then canceled the surgery. No pain hopefully forever!  If you go to see acupuncturist make sure it's not a chiropractor they get there license for it in a 60 hour course. 

You can usually get a free consultation. Ask them if they have treated TN & if it was successful. 

I pray this works for you as it did for me!

Hi Vicki, that's great! I'm glad its worked for you. Let me know if you continue to be pain free over a long period of time or whether the pain comes back. I'll make sure I see an acupuncturist instead of a chiropractor. Thanks for the tip! There's a Chinese medicine store in my town. They do acupuncture and other treatments but I'd rather be referred by my doctor. I wouldn't want to see someone who is not very good at what they do. I've been off the neuropathic tablets for about four days. The downside is that I've been experiencing these mild "electric shocks" again, which go right up my head. It has to be the cranial nerve. I'm putting up with it for now but if it gets worse I'll go back to my doctor. Trying to get an appointment to see him is not easy. I have to queue up outside from 8am to book a slot. The surgery I go to will be moving back to their old location soon, which is a shame because where its currently on the top floor of a building which overlooks the sea and the view is amazing! The old surgery got burned out but its just been refurbished. Hope you stay pain free!

Dr. usually don't agree with modern medicine. Still pain free 2 weeks now! If I need to go back 1 or 2 more times though I'm ok with that. It beats having surgery!

Thanks for the advice. I didn't know you could have both conditions at the same time. I agree that we have to be our own doctors if we're not entirely happy with what the GPs tell us. I'm going along with the TMJ diagnosis for the time being but keeping an open mind. Whatever I have seems to be continuing no matter what I do to stop it. I think stress can be a trigger too. I think mine gets worse when I'm stressed. I hadn't heard of Lyrica but I knew about Gabapentin. Two of my friends are taking that for their back pain and they said it helps them a lot. I've stopped taking the Carbamazepine for the time being and am just coping with the pain. It's agony sometimes when I eat but worse during the first minute or so and then I get used to it. Eating anything very cold or hot seems to be the worst. The specialist at the Maxillo-Facial department of the hospital thinks I have Facial Arthromyalgia, which is another name for TMJ I think. I'm glad that you're able to come off some of the drugs you've been using. It's never a good idea to take too many. I'm not sure what Fibromyalgia is but I'll look it up. My condition, whatever it may be, could be age related. I will be going back to see my doctor to see if he can refer me to an acupuncturist. Vicki (also commenting on this thread) seems to have been helped by that. I suppose it depends on how open to it my doctor is. It's available free on the NHS. Thank goodness we have the internet to do our research and connect with fellow sufferers!

That's great Vicki! I hope things stay that way