christella

Member
trigeminal neuralgia
trigeminal neuralgia was told yesterday no cure I will probably have it for the rest of my life it is the worst pain in the world i think the chances of getting it
is 20 in 100,000

anybody else had it as tips would gratefully received
 

Akasya

Postless Pointer
trigeminal neuralgia
Of the meds referred to , gabapentin I would go to extreme lengths to avoid .. I found it a nastily seductive habit forming way to turn oneself into a full time afternoon tv watcher.

It was hard to come off , and a waste of time . It did work , but so do others.

Once again , best of.

Steve
 

cside

Member
trigeminal neuralgia
Sorry to read this. Hope you find a medication that is effective where the side effects are minimal.
 

Jan1

Member
trigeminal neuralgia
My mum has had this for many years, sadly there does not seem to be a cure, she has had at least one operation but it has not cured or alleviated the pain. She is on constant medication which controls it as far as possible. The cold, wind, rain aggravates this complaint immensely, unfortunately it's 'something she has to live with'
 

christella

Member
trigeminal neuralgia
mine started about 9 years ago i didnt know what hit me i think i drank half bottle of rum to relieve the pain but after seeing the doctor i was taking tegretol tablets and within a week or so it had gone in the 9 years i had it 3 to4 times no problem it was gone in a couple of weeks but this time it came back with a vengeance it was 9 weeks ago it started i ended up taking max tab it was 800 mg a day so i went private £250 for 1/2 hours work i didnt care as long as he could solve it so i am still taking the same drug but hes got me on 1200mg but there is no side affect as the tablets are prolonged release the pain is not so bad and i can live with it but i cant drive or have a drinkbut it makes me so tired i play bowls every day had to resign from the first team cos i just lost the way to play go on me push bike thank christ still got me bowls and TLF
 

Hilsjw

Member
trigeminal neuralgia
So sorry to hear of your dilemma Chris - nothing worse than constant pain, especially when you know there's no relief in sight. Thinking of you and wishing you better. Hilary.
 

christella

Member
trigeminal neuralgia
well theres a thought it might be worth looking at only thing is the blood vessel in my brain is touching a nerve which causes the pain
 

Jaycey

African Refugee
trigeminal neuralgia
Acupuncture has been very successful for my family when Western medicine has failed – but will you find an experienced practitioner in Portsmouth?

I have a couple of contacts but you’d need to travel to Singapore or Myanmar!
 

christella

Member
trigeminal neuralgia
its starting to get better hurts when i clean my teeth in the morning then ok all day till ii have my dinner at night but a can handle that ok
 

Maisie

Member
trigeminal neuralgia
Whilst not suffering from this horrible condition, I did have a brief brush with it. My dentist hit the trigeminal nerve once whilst administering novocaine prior to dental work. It was agony, but fortunately for me - wore off.

I take huge doses of gabapentin three times a day (for something else). Whilst I have not experienced lethargy or any other apparent side effects, I suppose I have become dependent on it. Only because of how ill I was when I didn't take them because of a stomach bug. I was not told the effect suddenly stopping them could be. Now I am paranoid about them and always making sure I have them on me at all times.

If you are offered these, please be aware of the dependence issue before starting them.

I do hope that something can be found for you.

Good luck.

Maisie
 

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