Trigeminal Neuralgia

[Nomad]

I haven't been on here for a little while due to severe pain. Some here might remember that I had some crazy, weird dental work that led to pain. (Didn't have pain when I originally went to the dentist). I went to other dental professionals for help and had a root canal and other surgeries in an effort to fix it, but it only made things worse.

I now have severe pain in my right ear and other pain all around the area on my right side...even in my eye. I have been diagnosis'd with atypical trigeminal neuralgia. IT is a BAD diagnosis. I'm in pain all the time and often it is horrendous. Sometimes the pain is a little better (like now), but it rarely lasts more than 30 minutes.

I tried some traditional medications, but had horrible side effects. Now I'm on a tryciclic pill and a compounded cream with neurontin, lidocaine and capsaicin inside the cream. I just started that.

Was wondering if anyone here has this or knows of someone very well who has this...particularly the atypical kind. My pain is 24/7 as opposed to the shocking pain that zaps people badly periodically.

There are surgeries for this, but sadly, those with traditional/typical Trigeminal Neuralgia often fare better, so my options are very confusing.

Any information (and prayers) would be appreciated.

 

[InsaneCdn]

This is not from direct experience... but I remember seeing info about facial nerve pain, and the use of botox to treat that... it would seem like a safer option to try than surgery.

 

[TerryJ2]

My husband has a lot of experience with it. I remember him talking about it because it was a weird word. Trigeminal.
I am so sorry you are still in pain.
I will report back.

 

[AnnieO]

I don't have any experience but I wanted to let you know I've been thinking about you, and am keeping you on my bead-rattling list.

 

[cubsgirl]

I don't have any experience but ((hugs))....so sorry you are going through this - it sounds awful.

 

[Nomad]

Thank you.
I was going to go to an acupuncturist awhile back, but something happened. She also didn't have much exp. ith this.
However, I am going MOnday to a different one who does have some exp. with this.

 

[buddy]

SO very sorry. that is a tough one. my neighbor did have surgery but if she eats hot or cold it triggers it still. but the constant pain is gone. not sure what kind she had though.

I had heard of Botox too for that. other nerve blocks too. I wonder if a pain clinic (reputable, hospital based kind not the drug seeking kind, sigh) would help too? Sr.Kenny institute in mpls. for example(haven't gone there...just an example of the type) has an inpatient pain program getting people to manage horrible pain they needs if needed, getting off needs if needed, and things like biofeedback, hypnosis, acupuncture, etc......

 

[Signorina]

I do. It's not severe lately but I have had periods when it was - especially when I was around age 10-17 or so. It was never properly diagnosed - was thought to be recurrent ear infections ( i was 10 in 1977) then neuralgia pain due to scar tissue inflammation in my ears (I did have a lot of ear infections as a kid) and eventually i was diagnosis'd with TMJ- which i do have- but I've since discovered my TMJ is a bi product of the neuralgia. I was treated for the pain with empirin w codeine. At one point in HS the nerve spasms actually caused muscle stiffness on one side of my face & I was thought to have Bell's palsy! At that point, I was given an antispasmodic and put on therapeutic rx motrin as an anti inflammatory and prophylactic antibiotics for 6 weeks with the pain medication as needed .My pediatrician - a wonderful man- went out on a limb after consulting with the ENT who diagnosed the TMJ. (Realize this was the early 80s, malpractice wasn't a prevailing concern, Motrin was still rx, antibiotics were still widely rx'd, and HSers didn't yet abuse/resell pain medications! )

His premise was that the neuralgia has taken on a life of its own after being triggered by an ear infection or some sort of sinus pressure or tooth inflammation. And that dulling the nerve (anti spasmodic) reducing the inflammation (Motrin), addressing the shooting pain (empirin) and making sure no infection lurked (antibiotics) & that I stayed infection free for a few months would end it. And it did .

Over the years, it's returned - but never that badly or for that long. I've learned to pull out all stops the moment I feel even a tiny twinge. Heat works really well for me. I sleep on a heating pad often or lean up against one while reading, watching tv. (On the left side of my face) Microwaveable buckwheat beanbags help too- the heat and the pressure relieve it. I NEVER chew gum. I start taking sudafed & mucinex at the moment I feel sinus pressure. Aleve works well for me bc I don't have to remember to take it so often. If Aleve's not working, I alternate 2 Tylenol & 3 Advil every 3-5 hours.

I recently had nose surgery which triggered it. I realized for the first time that when the nerve spasms, I tend to clench that side of my jaw because the pressure is somewhat soothing. But if course that's the worst thing to do- so now I've added a night guard to my arsenal!

I had a bad episode triggered by childbirth. I was "pushing" with my face lol- broke the blood vessels. That time (ds3) I was placed on phenobarbital which worked.

Cold is also a trigger for me. I need to move away from the Midwest!

I've learned to manage it and yes- Botox helps. I was getting it in my "11"s which helped & my PS added a tiny bit by my temple to address it.

You should see a neuro - it's self perpetuating & once that nerve is ****** off & inflamed - it keeps flaring. The most important thing is to stop it - and neuro drugs work the best but may be trial and error! Then learn to recognize your nerve's triggers & address them early before that nerve goes on high alert!.

Please know that my original episode was the worst- horribly painful and months' long- but I have never has another episode even remotely that bad since. So, the pain will stop.
{{{{ hugs }}}}

 

[DammitJanet]

I have had two really bad episodes but I got them to stop with with some of the steps Sig outlined above. I also believe that the fact that I am on several mood stabilizers that also act on things like this help. I do take a fairly small dose of neurontin daily which probably helps. I refuse to go up on the neurontin because I am on the lamictal and topamax. Im afraid of making my brain into mush.

 

[TerryJ2]

Nomad,
good for you on acupuncture! Find one who has a lot of experience with it. Keep looking.
My husband said chiro won't work, but acupuncture will. He has had good results with every single person he has done!

 

[DammitJanet]

Odd thing I have noticed too is that I have something like phantom pain where I have teeth removed. It runs from where my jaw opens and closes near my ear down to the lower jaw bone where the teeth should be. It hurts!

 

[Nomad]

Thank you EVERYONE. For some reason, bein on the the computer long bothers me these days.
Sig....Thank you. How horrible to have this type of pain starting at such a young age. Yes, heat helps a lot! I actually wear a hand warmer on my ear! Yes, it looks crazy!
Janet...Be careful with dental procedures. Seems people with autoimmune type stuff...Fibro, Lupus, Sjorgens, MS are slightly more prone to nerve problems. So many of us started with a dental procedure.
Terry...Can you ask your husband about something called "Atlas Upper Cervical" A few people with TN have said that going to a specially trained chiropracter that uses this device/procedure has helped them. Although, my neuro said that he prefers acupuncture if I'm going to try something unusual. A few people have said acupuncture has helped them go into remission.

My neuro has prescribed a compounded cream for me. I picked it up a few days ago and am keeping a record/chart of how it is working.

For those so inclined, please pray. This has been very difficult. Thank you.

 

[TerryJ2]

Hi Nomad, I don't have to ask him. I know. He thinks it's hooey. It's just one adjustment, that any chiro can do. Of course, an Atlas practictioner would get all over my case for saying that ... I just don't see how they can stay in biz doing one adjustment all day long.
It certainly wouldn't hurt to have your neck adjusted, but I'd go for all of the certical vertebrae, not just one. in my humble opinion. (See, if it's only my opinion, husband won't get in trouble for criticizing another chiro; I'm the one typing this.)

The nerves to C1 are not the same as facial nerves, particulary trigeminal nerve 5, which has three major divisions: the ophthalmic nerve (V[SUB]1[/SUB]), the maxillary nerve (V[SUB]2[/SUB]), and the mandibular nerve (V[SUB]3[/SUB]).
(I had a little help from Wikipedia. )

Also, one item I found online says that it may be due not just to the nerve, but to an enlarged blood vessel that is pressing on the nerve.

Definitely, find a good acupuncturist with-experience in this issue.

Many gentle hugs. I know it's awful.