Carbamazapine help!

[Lovecavatese]

Hello peeps, I’m in terrific pain in my mouth and face, doc thinks could be Trigeminal neuralgia. Honestly feels like Jaw is splitting at hinge. Anyone else on Carbamazapine? It’s lower dose atm but think it’s helping a bit, can anyone comment. I’m in Hell!

[Colourpink66]

hi lovecavatese I really feel for you my Dad and my brother have this and I’ve seen the agony that the pain has caused them and made them nervous wrecks , I know my brother has tried injections in the past which did elevate the pain but unfortunately there is no cure, really trial and error with which pain relief works for you , also try acupuncture , wishing you the strength to keep trying my heart ❤️ goes out to you

[Lovecavatese in reply to Colourpink66]

Thank you soo much for replying, I’m not alone thank goodness. Thanks for your warm wishes ❤️

[Jacjai]

My partner has been diagnosed recently with the same condition. He was crying with pain, he was given tegretol 100mg.

He started on a doze 100mg in the morning and 1 at night.

It's did help for 2 weeks but the pain came back.

Was told to up the doze 200mg morning 200mg in the afternoon and 200mg at night and has worked.

Cross fingers the dosage seems to be working.

[Lovecavatese in reply to Jacjai]

Thank you so much for your reply, it’s great to be able to reach out , yes I’m crossing my fingers too, it’s awful having to endure the pain which is very like having abscesses in more than one place and electric shocks. I was crying too but good to know drug may work , they said 6 months on the drug then stop . Thanks might be rambling 💕

[Jacjai in reply to Lovecavatese]

Trigeminal neuralgia is the worst kind of pain apparently. It's was awful to watch my partner loosing his mind through the pain, I'm glad the dentist was quick enough to know about the condition.

We went to see the doctor with a name and was prescribed Tegretol and doing a lot better.

Hope you'll be better soon..

[deejames]

On a more positive note I had it for just over two years and medication only made it partially better. Then gradually I was noticing the pain less and then it disappeared. I very occasionally get a small burst of pain which lasts a few minutes but it always goes. Let's hope that this happens to you.I found meditation was the best way to deal with the pain. It did not remove it but helped me to deal with it when it was happening.

[Lovecavatese in reply to deejames]

Thank you for your reply, it’s getting like layers of pain, I’m in shock re it all. Really, struggling, thanks

[deejames in reply to Lovecavatese]

I was in despair initially and it ruled my life but strangely, although the pain was the worst I had ever had , because it was intermittent I could cope know it would go away.

[Lillylilac]

Hi there My daughter has this. She had a tooth out thinking it was that causing the pain but it wasn't. After being referred to the Max Factor clinic she was then referred to a Neurologist.

Sometimes with Trigeminal Neuralgia it can be the nerve which is trapped and causes the pain. My daughter was hoping it was this as an operation can often solve it. However after 2 MRI scans nothing showed up so then it is medication.

She tried Tegretol but it didn't suit or work.

She is now on Carbamazapine I am not sure of the dose but I know it is a high dose. She has taken it for about 5 years now and her pain is more or less controlled.

I so hope you find it works for you as I am aware the pain is just horrendous.

Sending you comfy hugs.

Lilly xx

[Lovecavatese in reply to Lillylilac]

Thank you for caring enough to reply. Yes, I keep crying. I hope your daughter recovers, the doc has said something about it might not return after the meds are gone. Warm wishes x

[Bantamdyno in reply to Lillylilac]

Hi ,I was tempted to have a back tooth out years ago ,the dentist xrayed it nothing ,next time I went I told her I was treating my shoulder with my tusbo and the pain in my tooth disappeared she was sceptical but nhs practitioners only know what they are tort .

[Dreamgreen]

Hello Lovecavatese,

I have trigeminal neuralgia and am taking Carbamazepine, the doctor slowly upped it to 200mg three times a day, which I find really helps.

I find knowing my triggers helps, I kept a diary to work out what they are.

I find the wind is one, so always carry a scarf, which helps.

A hot water bottle helps when I'm at home & those hand warmers are good to have when I'm out & about & the pain kicks off.

As has been said, acupuncture has really helped.

It's a horrible, all consuming pain so be kind to yourself.

Sending gentle hugs🤗

[Bantamdyno in reply to Dreamgreen]

Hi, I have just replied🤔 to L0vecavatese about my Acupoint avance and how to get on top of Pain points.

[Dreamgreen in reply to Bantamdyno]

Thankyou Bantamdyno, I didn't know about Acupoint avance. I've had a look & ordered one, I find acupuncture very beneficial, to be able to do this at home is helpful.Sending gentle hugs🤗

[Lovecavatese in reply to Dreamgreen]

Thanks for your response, upto now hot or warm drinks have aggravated it. But I think I’ve had this coming for a while with nerve pain in my cheek bones and face. Warm wishes to you,, x

[Bantamdyno]

Hi, I have peripheral neuropathy and I can easily get trigeminal if I stress my neck

muscles so I wear a soft neck collar when i'm lifting ect, there are trigger points in the front neck muscles to treat these I use my Acupoint avance which finds and treats the points, there are also points under the chin which affect the face also.

[Lovecavatese in reply to Bantamdyno]

Thanks for your response, yes I think my trigger is the same, I’ve been wearing my neck brace at bedtime to keep my neck safe, I struggle with my neck already, I’ve been trying to improve my fitness, I clearly shouldn’t have bothered😊, another reminder telling me to pace myself. Migraines seem to travel into my face too now and my skin is hypersensitive. I’ll look into Acupoint advance. Thanks and warm wishes

[Bantamdyno in reply to Lovecavatese]

Hope this will help,works for me🤔purchased from Merit

Acupoint

[Lovecavatese in reply to Bantamdyno]

Thanks I will definitely get when I can , thanks again 👍

[redkite55]

I have had this recently so know how painful it is. Mine was like the worst toothache, earache and headache possible but all at the same time. I had it for 2 solid weeks to start with, sometimes upto 20 times a day lasting anything from 5 minutes to over an hour. I saw an emergency Dr who said to up my Gabapentin, which did nothing, and to go back in 2 weeks if it hadn't stopped. It did stop but then started again 3 weeks later, so I went back to see my own Dr this time. He said the pain could last on and off for 3 months but should clear up eventually, he did mention anti epilepsy medication but was reluctant to give it to me for something that should go away on its own, but to come back if it got worse. A week after the Dr visit the pain went and touch wood hasn't come back, that was 4 weeks ago. Hopefully your pain will go quickly too.

[Lovecavatese in reply to redkite55]

Hi thanks for your response, last night I started with blisters on the roof of my mouth so had to stop taking Carbamezapine, I rang my docs today at 8 but wasn’t offered any help for my pain, they’re so paranoid about drug seeking behaviour that pain meds are starting to be a thing of the past. So I have no option but to take Synadol and self prescribe. I still have the jaw and face pain and my whole body nerve pain. 🤷‍♀️hope it goes soon , sleep is difficult.