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So much pain

I,m in so much pain from trigeminal neuralgia i could scream its in my teeth my ear the back of my head and down to my shoulder, it hurts sooo much nothing is taking the pain away.

I,m on 25mg pegablin breakfast and tea time and 50mg at night also take co-codomol as an extra when needed, but i only get up to 1 hr releaf from the pain with the co-codamol.

i just cant take it any more its been this intense since Saterday never had it so bad for so long.

I can,t sleep i cant drink hot or cold drinks and i,m near to tears all the time Anyone had it this bad? and if you did what did you do to ease the pain?

I went to the dentist yesterday just to make sure it wasnt a tooth causing the pain but he couldnt find anything wrong.

Sorry to be so down but i cant take this pain anymore.

Barbara.xx

Oh Barbara. You poor thing. I really feel for you.

I was going to advise Co-Codomol as this is the only thing that really kicks my pain into touch but you have already tried this. I don’t know what else to suggest. I hope someone else will have an idea of something that will help you.

The only little thing that helps a little for me is pressing the pressure points on the flap of skin between my thumb and pointing finger. This takes away the pain while I am sqeezing that area. I have even resulted in putting a clothes peg on the area so I can sleep.

(((Hugs)))) Barbara.

Shazzie x

Hi Barbara,

I’ve suffered TN for years (sometimes mild, sometimes horrific). You seem to be on a fairly low dose of Pregabalin - can you get this increased? I am taking 300mg twice daily at the moment as well as 20mg of Amitryptilene.

Murraymint

Really feel for you Barbara its the most awful pain you can ever have, i had it in my jaw in a tooth a few months ago and i screamed with the pain,and i have a high pain threshold, i find taking ibuprofen,like a course helps with the inflammation a little,i took 2 tablets 3 times a day for a week .hope it goes off for you very soon.

((((((((((((hugs)))))))))))

J x

Have you tried holding a bag of crushed ice against your face? It works for me for both TN and toothache. Of course you have sit there and hold it in place, but why not give it a try? It may work for you too. You will need to wear a protective glove (gardening or oven glove) otherwise your hand will go numb.

Hope you get some relief soon.

Ben

Thanks shazzie i will try the pressure points thing iv,e never heard of this will let you know if it helps anything is worth a try just to get some relief from this.

Barbara.xx

Thanks Murray,i might just ring the out of hrs service to see if i can increase my meds or i might just take an extra 50mg tablet before bed tonight see if this helps.

I hope you dont get to much bother with the T I yourself its the worst pain ever.

Barbara xx

thanks Mrs j unfortuniatly i,m asthmatic and cant take ibuprofen as it dosn,t agree with me, but thanks for the suggestion i wish i could it might just have helped.

Barbara.xx

Oh Ben thats a big no,no ice eeekkkk the cold weather in the winter give me jip.

when the cold wind hits my face i get thousands of pins and needles all over my cheeks, i hate this trigeminal neuralgia its just so bad nerve pain is the worst thing ever.

But thanks for your suggestion

Barbara.xx

Thanks shazzie i will try the pressure points thing iv,e never heard of this will let you know if it helps anything is worth a try just to get some relief from this.

Barbara.xx

In which case, might a heat bag help? I use one for neuropathic pain and the heat does ease it a bit.

I haven’t had TN (thank God!) so just a suggestion and probably someone is going to tell me how stupid a suggestion it is.

Forgot to say, Barbara, have you got an MS nurse? IMHO they are much better with this kind of emergency situation than GPs or the Out of Hours medical team (and such pain IS an emergency as far as I am concerned) . I know that it is the weekend now but did you think of them before?

In my experience. NHS Direct (or whatever it is called this week) is likely to result in a trip to A+E rather than real advice and A+E at the weekend …

How are you today Barbara?

I was really sceptical about the pressure points thing until someone I used to work with was working part time in that field and I I had a thumping headache one day while I was with her and she said pinch the skin between the thumb and pointing finger and it will go. I did it to shut her up and it worked!!!

Not sure if it will work for your pain as your pain sounds awful. Worth a try though.

Shazzie xx

I took an extra pregablin last night and managed to get a bit of sleep thankfully, the pain is still there but tits coming and going today so getting some relief i went to town with my daughter and it was nagging in my ear and teeth sometimes sharp but had to grit my teeth on the bus cos i didn,t want to look daft screaming out on the bus.

Im going to take and another pill this afternoon and try and have a nap see if it will ease a bit more thanks i did try the pinching that you said but maybe not long enough i will try again though as it sounds interesting.

Many thanks for helping me Barbara xx

I wish i did have an ms nurse bu i,m in limbo land i,ve been told 3 times i have ms and then had it taken away each time so i cant get any help there, i dont want to go to A&E as it could be a 4 hr wait or more and still not get any help so only 2 more days i will go to the gp,s sit and wait surgery on monday morning and hope i don,t go mad before then lol.

Thanks Barbara.xx

No probs Barbara. It’s horrible being in pain.

I’m on Gabapentin and my neuro said that when times are really bad increase slowly until the pain eases. He said only I can know how much to take and how much my body needs to stop the pain. I know though that the increase has to be done slowly.

Good luck sweets.

Shazzie x

Barbara

I’ve just googled pressure points for TN and the pressure points for this pain is on the ear. Why don’t you google it? It’s intresting.

xx

Is there a pain clinic near you? I think these clinics deal with pain whatever the cause.

thanks shazziie i will have a look on google at the pressure points see if there any good.

thanks also kracowian i will have to ask my gp for a refferal i never want to be in this much pain again.

I,m actually a bit better today its not so intense although still taking co-codomol regularally but there lasting longer before wearing off so hopefully i,m past the worst "touch wood " i just hope that it continues to subside and not flair up again.

Thanks all for the help i thought i would go mad with the pain, Barbara.xx

hope the awful pains easing for you Barbara,i honestly dont know how you have put up with it for this long,i have only had it in short bursts thank god, last time i had it i fell to the floor in agony,my family thought i was being dramatic,you cant make people understand who havent had it JUST how bad the pain is.will keep my fingers crossed for you that its easing for you.

J x