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Trigeminal Neuralgia- Complication Of Eds?


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Hi folks. I had dental trouble last week which I'm being told has triggered the pain I'm now feeling- the worst of my entire life. All through my left jaw and left teeth. It has had me screaming, sobbing, hysterical with pain because it is taking me far beyond my pain threshold.

No painkillers help. Not even tramadol.

I was given marcane and other local anaesthetic injections by the dentist. I was assured these would give 12 hours of relief but it was not even two hours later that they wore off.

I am home from Oxford, unable to function, unable to eat or sleep properly.

I am wondering if this is some kind of complication of EDS, and also if I had an adverse reaction to the injections, since they made me - and my poor gums and mouth in general- feel FAR worse.

What other treatments are there? I feel very alone with this. PLEASE anyone who has had experrience - tell me what helped and how you coped as I am not doing too well with this unbearable and unmanageable pain right now.

Persephone. xx

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I had severe trigeminal pain last spring. You describe it well, as the most intense nerve pain ever experienced. I am afraid I never found anything that helped except ice. I had ice packs on my face so often I was sure i was going to get frost bite!

Eventually as some of my other POTS symptoms began to shift around (and the shaking lessened, which was probably causing teeth chattering as well as bracing against the pain) the facial pain subsided as mysteriously as it came on.

Good luck finding some relief. My thoughts are with you.

~EM

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Traditional painkillers like tramadol often don't work well for nerve pain. Often meds such as amitryptaline, gabapentin and pregabalin are used for this sort of pain. Ask your GP about medication options, they may be able to phone someone from the hospital pain team for advice if needed.

I hope you get some relief soon!

Flop

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Oh, I wonder if this is what I had in the past. The slightest breeze and my cheek/upper jaw on my right side were in the worst nerve pain ever. OTC painkillers did nothing. Sitting still and keeping out of the cold helped reduce the number of waves of pain. It came and went within a week each time.

Thinking it was dental related and being some distance away from my usual dentist, I went to the local dental hospital. They still exist in cities with dental schools and the one I went to had an A&E department which ran on a first come first served basis (which meant getting there before 8am and being prepared to stay all day). After much searching and scanning, they couldn't work out what was wrong, so injected some anaesthetic and cut some nerves. This didn't sound like the best plan ever to me, but I was desparate! The pain did wear off a couple of days after this. I don't know if this was related to the treatment or coincidence.

I have EDS. Can't say I had heard of trigeminal neuralgia until I read your post. I'm not sure if it describes mine or not. As Flop says, looks like anticonvulsants are the way forward if you can persuade someone to prescribe them quickly enough to catch this episode.

Good luck in sorting this out and hope the pain subsides soon.

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I also have a question for those of you who are familiar with trigeminal neuralgia. I have migraines, but a couple of times recently along with my migraine I have had pain extending down into my cheek. Does anyone know if this could be trigeminal neuralgia, or just part of the migraine. Are they related?

Summer

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Guest tearose

I find when the nerves of the left side of my face are sensitive I may tirgger the neuralgia/ neuritis which is extremely painful.

I avoid breezes, showers to that area and the worst can be the car seat belt strap!!! Dental work was also a trigger. Actually, I have had too many root canals and think the blood supply to my teeth was compromised from POTS and it inflamed my TN symptoms.

I was offered neurontin but with its contraindications, chose darvocet, short term instead. In my case, it passes in time. It is hard to do or think about anything else but for me, it eventually passes.

I am sorry you have this terrible pain.

tearose

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