Suspected trigeminal neuralgia Tegretol offered.

[Eme65]

Hi

I have just got back from gp's he wants me to try tegretol for my face pain which radiates over the left side of my head ( sinus & behind eye) so painful to touch I could vomit, it makes me feel dizzy. I woke up this morning with palpitations, pressure in my head & my teeth hurting.

I have always thought this pain which comes & goes was fibro related ( I don't get zapping electric shock pain, it's more like a toothache pain, but nothing wrong with teeth) as lots of posts have confirmed.

Really worried about taking an anti epileptic drug which seems to have so many side effects...is there an alternative?

[Hidden]

Hi Emme, my son-in-law had this problem for over 2 years, After he was found crying with the pain I decided to take him to see my rheumo doc privately, the pain IS fibro, he clenches his teeth at night and the dental surgeon was asked to make him a shield to stop this, the migraines he woke up with where horrendous, he gets chronic fatigue, he had a ct head scan=normal, he had bloods taken=negative, he was a bike rider and has been advised to stop until his leg muscles are much stronger, he was also found to have ceoliac disease (nothing to do with the fibro) and as part of his diet his g.p was asked to prescribe high strength vitamins as gluten free is short on vits, his blood pressure sores when he is in pain and so he is on b.p tablets, all this because he had g.p who labelled him a hypochondriac like his mother- that guy has had a nasty letter from me. yes Emme you can get fibro in your face, head and jaws.

[bluebell99]

Hello Eme65 , your symptoms sound horrendous, but I have looked at the side effects of Tegretol and they looks horrendous too.

Sorry, I am not being much help, but personally I think it depends how desperate you feel. Don't forget Gabapentin and Pregabelin are both anti epileptic drugs and many fibromites do very well on them.

Has the doctor definitely ruled out TMJD which is well known to be fibro related and can give you nerve pain up your head, along the jaw and into your neck. I have toothache pain even though I have no bottom teeth on that side.

It is a difficult choice and no one can make it but you.

I wish you luck whichever you decide.

X

[Hidden]

You have my deepest sympathies - I had trigeminal neuralgia several years back - I was given several meds for it but they did no good. I ended up with major - surgery partial dissection of the trigeminal nerve. It cured it but the surgery was no picnic in the park. I also had the electric shock pains. I really hope you find something that works for you asap .

Best wishes Jacqueline X

[Hidden]

I have this as well and tried tegretol but it did not help me (but everyone is different)

Since taking pregabalin my trigeminal neuralgia is under control. Hope you find something that helps you x

[TheAuthor]

Hi Eme65

I am so genuinely sorry to read this my friend. Both Pregabalin and Gabapentin which are both used for Fibro are also anti-epileptic medications in their own right also, and they also carry a huge amount of potential side effects.

I have pasted you the link to the NHS Choices cache on treatments but they do mostly consist of anticonvulsant drugs such as: Carbamazepine, oxcarbazepine, lamotrigine, gabapentin, pregabalin and baclofen:

nhs.uk/Conditions/Trigemina...

I want to sincerely wish you all the best of luck and please take care of yourself my friend.

All my hopes and dreams for you

Ken

[Fra22-57]

Yes When I was prescribed Tegratol I was surprised as my ex brother in law took this for epilepsy. Drugs are used for all sorts of different aliments thou.The side effects scare the life out of you but they have to note them down. It doesn't mean you will get any.I didn't and it helped my trigeminal neuralgia. Good luck.

[deejames]

Works for me. Only one or two attacks a week now