Trigeminal neuralgia

[IsabelleAdjani]

Has anyone got any positive stories of recovering from this? I was in constant pain in right side of jaw for about a month, went to the dentist twice who did xrays both times and could find nothing wrong and was mystified, so went to doctors who first put me on Naproxen, which didn't work, and then on Amitriptyline - started on 10mg and have now increased to 30mg. Have been on it for about a month now and pain has mostly gone away, and also had acupuncture. At first was like a complete zombie on Ami but feeling better now but am not sure about the long term - the doctor was not very positive and did say that nerve pain is inexplicable and sometimes never goes away, but it is impossible to say whether it will or not. Am not keen on idea of being on Amitriptyline for ever but would rather that than be in pain. Also am afraid will gain weight on it - have not so far but it is worrying me! I have no idea what caused the neuralgia and have not identified any triggers - has anyone else experienced this?

Yes & no - I get this, so I really feel for you as it's horrendous

That said, thanks to my ENT doctor listening when I was there for a sinus check up & I apologised as I was zombie like due to pain ills I needed to take just to get there - he arranged a CAT scan & turned out mine has a cause, one that he thought could be operated on & fixed - sadly the maxillary surgeon he passed me onto disagreed

My source turned out to be a small pocked of infection in my jaw bone, left ver from what appears to be a botched emergency wisdom tooth extraction - this infection flares up from time to time & causes the nearby lymph glands to swell up

It's this lymph gland swelling & pinching the trigeminal nerve that causes my TN - I still get it from time to time, but in my case it's the right type if antibiotics that are needed to nip the infection flare up in the bud - turns out it's also the source of my recurring sinus infections & having a sputum test by the ENT doc identified the bacteria so they now know which AntiBs to give me

I've also found taking Spirulina gels as it boosts my immunity

I had numerous dental X-rays & it never showed up - neither did the crack in my wisdom tooth that can also cause this - new dentist discovered that with a funny little tool ( sorry, I'm just so technical )

Hope you find an answer

Taking Spirulina HELPS - autocorrect gone mad

Thank you! The dentist did refer me to dental hospital so they could do further checks so am waiting for referral. I had root canal on one of my back teeth about 15 years ago and have a crown so dentist thought it could be this and wanted dental hospital to investigate root canal further but he was dubious this was the cause as he didn't see why it would suddenly have flared up. Have not had any sinus problems or anything like that though. I will look into the Spirulina as well, thank you! I am not keen on staying on Amitriptyline long term but equally don't want to be in pain forever (am only 39, from what have read on line this disorder is more common in older people!). Do you think stress could be a factor? Just been through very stressful few months at work. Thank you for responding - no one I know has heard of this and is very difficult to explain so glad am not alone :).

Just sending sympathy . I think the pain with this is notorious . I met a lady in hospital who ended up with a spell in a psychiatric hospital because the pain was so bad ...must have literally driven her mad .

Hope you find a way of coping .

I think there's a thread about pain and long term use of pain killers . If I spot it I'll come back with the link .

Not very long ,don't know how helpful ...
www.mumsnet.com/Talk/general_health/2114251-Chronic-Pain-Long-Term-Medication

I have TN. I first thought it was dental, as did my dentist. After a tooth extraction the pain continued and intensified. In the end I went to the GP. After a bit of googling I had an idea it might be this and asked outright if it was TN. The gp agreed it might be. He started me on carbamazepine (which is the first line treatment and what the GPs are recommended by the NICE guidelines to prescribe). I couldn't tolerate it and had side effects so was swapped to gabapentin. It's going a good job of managing my pain.

You asked what causes it... have you been referred to a neurologist? I was and had an MRI. It shows that an artery in my brain is compressing the trigeminal nerve, which is the most common cause for the pain. It also showed white spots on my brain so I'm going down the MS diagnosis route (lumbar puncture yesterday) to rule that out as that can also cause TN.

As for cure... if you are lucky, you can get periods of remission. They can be quite long for some - months or even years. But the typical route for TN is that it will come back and that periods of remission will be shorter each time.

I personally am waiting with hope for a first remission. I've had it for 6 months and although my medication works pretty well, I can still feel that the potential for attacks is there and I get aches and niggles.

My neurologist disagrees that this is a condition reserved for older people - and a peek on the fb groups (there are lots) backs that up. I was 39 when I started with it.

I think stress can add to it all, but it isn't the cause of your pain and the dental issues are unlikely to be a cause too.

Feel free to PM me for any questions.

Thank you gingeroots for the sympathy :)! And 2 kids in tow, will PM, thank you - sorry to hear that you are suffering from TN too!

Thanks Isabelle. Interesting link too, ginger.

Next week I go to see the neurosurgeon at Walton to discuss surgery. I expect to be told I am too young (hurrah), haven't had it long enough and haven't tried enough drugs yet to be a candidate for surgery. Not that I want the surgery anyway.

Positive story here...
I have TN. Lost two teeth unnecessarily before my wonderful GP figured it out ( I now have a dental phobia as a result and a very apologetic dentist..it really wasn't her fault)
Amitryptiline did nothing for me, and a was sick on carbamazapine. Gabapentin however, hit the spot, in huge doses and I remain on it, at a lower dose. I still get 'niggles' and the odd strong pain but NOTHING like the initial, agonizing pain that made me want to die.I up the dose if I get 'warning 'pain.

Having said that I need a broken tooth repaired and a couple of old fillings done and i have just requested to be referred to a sedation specialist as I am having a few niggles and no WAY are they touching my face when conscious!

I was dx 5 years ago..at 41. So far after the awful initial bout, it is well controlled. I also have MS like problems but no lesions so the jury is out on that!

I think mine started in my 20s.. when I also had teeth removed unneccesarily (at the back thank god.. no one can see my gummyness!)

It is a bitch of a condition but the right meds DO help. I'd go back to the docs and ask for carbomazapine or gabapentin tho!

I'm glad to read your post, medusa. Gabapentin stopped spontaneous attacks at 1500mg a day, and it stopped triggered attacks at 1800mg. I could eat a meal again without stopping halfway through because it had triggered an attack. and I could drink hot drinks again. I do get niggles and if my face gets cold then it aches but that is nothing like what I had before.

It has left me with a few minor side effects which I can live with compared to how ill the carbamazepine made me feel.
I worry that it will stop working at some point as I've read that it can, so to read that you are on it 5 years layer is good.

For those worried that gabapentin will stop working - prefab alien is a sister drug that can be swapped to if this happens - learnt this at the pain clinic & it worked for friend who had sinus cancer, she kept swapping between the 2

Magnesium and B12 are both supposed to be good for nerve pain of any variety.

Thank you for all the advice and positive posts Medusa and Sleepy, it does make me hopeful that it can get better - although it is a bitch of a condition. Amitriptyline does seem to be working for me so far but will switch to Gabapentin if it seems to get worse. I know what you mean Medusa about the pain making you want to die - much worse than labour which was worse pain I'd ever experienced, but at least there was a point to labour and I knew it would end (eventually :)!!). Think it is made worse by the worry that it will never go away - so undersand why you are worrying the Gabapentin stops working 2kids.
Also agree with Sleepy that acupuncture does seem to help. And I am an extremely nervy/nervous person - combination of my disposition and finding life quite stressful at the moment. I think mine started after a really stressful period at work when I was very run down so am going to try Magnesium and B12.

I haven't had a bout for 5 years now. Touches wood!
Prior to that I was on 50mg of amitriptilene which worked for me. This was probably for a year. I was very depressed and on medication for that, so stress could well have been a factor.
The pain was horrendous, and there were times when I could have clawed the side of my face off. So taking the mess long term didn't really bother me. I wouldn't worry about it too much, but talk to your go. Different people react differently to different meds and I had to try about 3 before they found one that worked, so don't assume it will be easy to change if your current meds are working. The new ones might not be as effective for you.