Does anyone have Trigeminal Neuralgia!!

mardatha

I always get it in the same place. Starts like a knitting needle poking into my ear drum and spreads right up the side of my head. I cant use a comb or a phone, heat sets it off and cold sets it off, and I seem to get it when I'm really extra low or stressed. Hot water bottles and staying still fix it, but it takes time. I havent had painkillers for it because by the time I get an appt it has usually gone away.

annie123

my mum had it, diagnosed at 42 (1984) which is apparently young to get it,
She didnt like the side effects of meds, but when they suggested brain surgery :eek: to kill the nerve off, she tried alternative medicine.

The Chinese herbalist was the last thing she tried (1987) and as far as I know was successful, but I haven't spoken to her since 1993 so dont know if it has returned.

She always felt embarrassed if it happened when at work as she said she must have looked like a complete idiot shouting..oh s**t ! and putting her hand to her face , she often wondered what members of the public thought:rolleyes:

mardatha

God annie, I always wonder what I look like too. If I'm on the Phone I do exactly that, but I do less ohshit and more ARGGGGHHH !

Chronic_tn_sufferer

Hi, I'm sort to read you're suffering. I suffer badly with it both typical and atypical take 3000mg daily of oxcarbazepine, 50mg amitriptyline, oramorph and lidocaine patches and still suffer badly with breakthrough pain. I had an mvd done last year, then had complications of a csf leak, and only managed about 6-8 weeks before the stabs were back in force along with the atypical pain which never went.

It is covered by the disability at work act, but not usually covered for DLA, as it doesn't affect being able to walk and needing daily care as such, despite it being very debilitating.

With tn, ordinary painkillers have no effect due to it being nerve pain, which is why the most common used meds are anticonvulsants or trycillic antidepressants which both have a profound effect on the nerves. The side effects from these are not pleasant and can often make people feel very rough, but do stick with them.

allydowd wrote: »

I had it and was 'cured'! It turned out that I had an unnoticed, and hence untreated, dental abcess up under my cheeckbone that was causing the pain. Have you seen a dentist lately?

TN is nothing like dental abcesses :mad: give me dental abscesses any day.

FleurDuLys

Chronic TN sufferer, whereabouts do you place the Lidocaine patches? And do you find them helpful I don't suffer from TN (thankfully) but I do get cluster headaches. I am prescribed lidocaine patches for spinal-related nerve pain but I also stick these over my forehead/eye socket to help numb some of the pain related to the clusters when I get them. I've never heard of anyone else trying this sort of thing so I was intrigued to read your post

I'm on a lot of other medication as well, a combination of different types of drugs to target different types of pain. I have found that Gabapentin really helps me with nerve-related pain so that's something I can recommend people with nerve pain ask their GPs about.

Wicked_witch

My husband suffers from it and finds gabapentin controls it very well. I had to go to the doctor with him and pretty much insist they gave it to him though as they kept prescribing anti inflammtories that didn't help in the least.

Yakubkarim

I have bilateral trigeminal neuralgia,it is totally disability a
I was operated long time ago on right side the pain had gone on the right side. Later my left side of face was dx as TN. I m on tegretol gabapentin I have increased the dose of both. Pain under control but drowsy unsteady on feet. I m on bed as feel very dizzy moving about.worst pain to have.
Yakub

Richie-from-the-Boro

Branch of the army we didn't wear gloves or headguards

- had it for two years in the 60's .. .. purgatory
- broke a tooth in half in a boxing match
- tooth out, pain disappeared with the tooth

Get a referral from your GP to Orthodontics and get checked out, best of luck.

lillie_put

yes i get it on an off an lose vision in 1 eye for a while does come back all b it very blurred an will never get better

the pain is horrendous

skintmacflint

Richie-from-the-Boro wrote: »

Branch of the army we didn't wear gloves or headguards

- had it for two years in the 60's .. .. purgatory
- broke a tooth in half in a boxing match
- tooth out, pain disappeared with the tooth

Get a referral from your GP to Orthodontics and get checked out, best of luck.

Same thing here. Had this terrible pain across face many years ago. Started with really bad earache then moved across face. Doctor advised seeing a dentist. Dentist did an x-ray said he couldn't find a problem But took a back tooth out, and problem solved .Never had it since.