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trigeminal neuralgia anyone

Hi

Any one out there suffer from trigeminal neuralgia. I’ve had 4 episodes of this horrible symptom over the last 6 weeks, each episode lasting 45 minutes.

I’m on a couple of different meds to try and prevent it, but my question is does anyone out there have any suggestions for dealing with the pain when it hits?

For anyone, especially newbies, who haven’t heard of this, and feel the need to go googling, please don’t freek out thinking this will happen to you. Apparently it’s quite rare. I’m just one of the lucky ones.

Hi,

many sympathies - it is the worst pain imaginable and I feel for you. It takes a while to get the dosage of medication right - if you are still suffering with intense pain then you need to up the amount that you are taking. It has been many years since I suffered with the full blown pain. I used to get it every day and did some crazy things to try and get relief - including putting a cloth with water straight from the kettle on my cheek ( blisters but hey - You’ll do anything!) in the end the only thing to do was endure it. It always lasted about 35 minutes so I used to watch the clock until it was over. I met someone recently who had it - constantly - I can’t begin to imagine what that would be like. I have had an op now so manage with a very low dose of carbemezepine but I live in dread of it returning. Keep going back to your GP to adjust your tablets until you get relief. It took ages to get it right for me

jane

Thanks Jane.

Glad you seem to have yours under control. You’re right it is horrific. In fact I can’t find words strong enough to describe it.

My consultant has pretty much given me carte blanche to increase the dosage as I need providing I don’t go over a certain dosage. He’s given me some strong pain killers for if it hits again, but I could tell he wasn’t confident they would work. He pretty much said there is nothing that can be done I just have to ride it out.

At least adding the new tablet seems to be working at the moment. Mind you I’m also floating some where between the floor and the ceiling!

Him I am also one of the lucky ones. I find nuerontin, OxyContin and Oxynorm give me enough relief to make it bearable. They also make me float but it is better than the alternative.

there is an injection that my gp mentioned that can give you relief for a few months but it sounds a fairly horrific procedure done up through the back of the roof of your mouth. So for the moment I am happy floating.

ann

Hi, I’ve had TN since Feb and, yes, giving birth was a breeze compared to this, I remember an attack happening while I was driving so couldn’t do anything but carry on with tears steaming down my face hoping it would stop, almost had to pull over onto hard shoulder on motorway but it passed quite quickly thankfully. I take Gabapentin, I try to keep it at 600mg per day but sometimes I get twinges and then increase it straight away to 900mg, sometimes 1200mg, anything to stop the pain coming back! When the attacks were bad I would carry a hand towel around with me as the only thing I could do to help was bury my face in it until the pain had gone, somehow my face being smothered completely did help. I also drank through a straw and basically eat soft food only, not much fun but worth not triggering an attack.

I’m sorry you have this, it’s not something I’d wish on anyone and I hope you find something that works for you xx

hiya

i too have had this. i begged my dentist to take 2 of my teeth out! he wasnt keen (quite rightly!) but my mouth, swallowing and speech has all been affected (still is) and the pain was unbearable. since the teeth were removed no tn/pain at all so it was right decision for me BUT i know this is drastic and not recommended as routine! be 110% sure what is causing the pain-which i know is impossible so i hope u get relief in some shape or form.

ellie x

ps being told ‘its rare’ just winds me up! it doesnt help when its real and happening to you. take care.

Hi Ellie

Sorry I didn’t mean to wind you up by saying it was rare. I just wanted to reassure others that it’s highly unlikely that they would get this.

I think my teeth are safe as my pain is all centred around my ear. I seem to have an unusual form of tn in that it’s set of by electrical activity in my head that I can feel in the form of a woosh through one side. I can get up to 200 of these a day without them always triggering an attack.

Glad you found a solution that worked for you.

Shuffler

Sarah and Ann

Sorry to hear you are both sufferers.

I’ve also found stuffing my face into something also seems to help me cope. I’m not sure it does anything for the pain though.

Ann , you made me smile as floating up near the ceiling is about where I am at the moment.

I hope you both stay pain free. As you say , this is not something I would wish on my worst enemy.

Take care all.

hiya again

i didnt make myself clear! YOU didnt wind me up-i meant professionals! i have several ‘rare’ things…*sigh!

you take care ellie