Trigeminal neuralgia

FishOutOfWater · #1 07-14-2020, 07:53 PM

Anyone (else) have it ?
Did Carbamazepine (Tegretol) help ? (not for me, it doesn't)
How did you manage sleeping ?

Dear Lord... Please make the pain stop...

. . Waiting for my referral to a neurologist.

Osky · #2 07-14-2020, 08:16 PM

Sorry to hear of your condition. Do you have any idea the cause? This would of course have bearing on which medications may help.

Osky

FishOutOfWater · #3 07-14-2020, 09:45 PM

Quote:

Originally Posted by Osky

Sorry to hear of your condition. Do you have any idea the cause? This would of course have bearing on which medications may help.

Osky

Thanks. No, wish I did. Medication helps, but hasn't "cured" it or taken it away.
Before medication, I almost contemplated self-induced permanent sleep. It was that bad.
This just started happening 6-8 weeks ago, minor at first - grew into debilitating pain that ended in a call to the doctor last week.

Worse part about it, trying to sleep it off doesn't work... When you lay down, your blood naturally tries to equalize and sends more blood to the head. This increases volume and pressure, which in turn places more pressure on the nerve as it pulses...

Basically, 2-5 minutes after I lay down I have to get back up to make some of the blood leave my head (due to gravity), then return to bed once the pain subsides or diminishes to the point I can try laying down. At which point the cycle repeats, usually 3-5 times before I can lay down without a sudden rush of "electrical pulses" thru my temple/ear/jaw/tongue. Sometimes it's so bad, it makes me salivate profusely.

Twisted Canuck · #4 07-14-2020, 10:09 PM

I've never heard of this, had to look it up. It sounds truly awful. I know chronic pain can be totally debilitating and bring on depression, I've dealt with it on and off for years (arthritis), though your monkey sounds worse. I have no answer for you, but much sympathy. I can only suggest you keep talking to your doctor(s) and hopefully something can help you. Hang in there.

Atex · #5 07-14-2020, 10:25 PM

You need to see a specialist, my grandma had it really bad until she had a small five minute surgery, what did wonders. I've heard botox injections also help.

Koschenk · #6 07-14-2020, 10:49 PM

I had shingles in the trigeminal nerve, symptoms sound damn near identical, I sympathize for your pain. Gabapentin took the edge off but makes a fella pretty dull. I hope you can get it sorted out sooner than later.

FishOutOfWater · #7 07-15-2020, 02:36 AM

Thanks for all the kind words. Any advice is truly appreciated. I'll look into every recommendation.
This medication (Tegretol) is pretty heavy stuff, used for epilepsy patients.
Makes me kinda dopey (see my other new thread), like the day after a nasty hangover.

Thank you

FishOutOfWater · #8 07-15-2020, 02:38 AM

Quote:

Originally Posted by Twisted Canuck

I've never heard of this, had to look it up. It sounds truly awful. I know chronic pain can be totally debilitating and bring on depression, I've dealt with it on and off for years (arthritis), though your monkey sounds worse. I have no answer for you, but much sympathy. I can only suggest you keep talking to your doctor(s) and hopefully something can help you. Hang in there.

I can be brutal... It's done me no favors.

This is comparable --->

Osky · #9 07-15-2020, 05:56 AM

I do not know your treatment options but keep at it.
I was diagnosed with an extremely rare disease 15 years ago or so. Once diagnosed I was sent immediately to the lauded Mayo clinic. There I had a meeting with doctors including the Dean of medicine and they turned around and sent me right back up to the University of Minnesota medical facility in Mpls/St. Paul where they did a fabulous job and brought me back. Before leaving the Mayo I asked them why, being they are the world famous Mayo, would they send me to the U? The Dean simply said " Where'd do you think we doctors come from?"
Point in this is if you are able to up there keep searching for the very best specialist.

( sleep in a recliner at a slightly up position maybe )

Osky

tbiddy · #10 07-15-2020, 06:06 AM

That sounds awful. Join a Facebook group (There is a group for everything) and they might be able to help. Did a quick look and surprisingly there are lots of Trigeminal neuralgia support groups on there.

rafternk · #11 07-15-2020, 07:39 AM

I had a case of Trigeminal Neuralgia 23 years ago. Was quickly shipped off to Rocky View Calgary for an MRI. Found nothing in the way of brain tumor as they wanted to rule out a possible cause for the pressure. Turns out it was dental. After a tooth extraction Trigeminal Neuralgia pain was gone. This whole process took 2 or 3 weeks and O.M.G. the pain is horrible. Keep demanding an escalation of testing and medical professionals until you get an answer.

58thecat · #12 07-15-2020, 07:44 AM

Quote:

Originally Posted by rafternk

I had a case of Trigeminal Neuralgia 23 years ago. Was quickly shipped off to Rocky View Calgary for an MRI. Found nothing in the way of brain tumor as they wanted to rule out a possible cause for the pressure. Turns out it was dental. After a tooth extraction Trigeminal Neuralgia pain was gone. This whole process took 2 or 3 weeks and O.M.G. the pain is horrible. Keep demanding an escalation of testing and medical professionals until you get an answer.

yup keep pushing for testing, find the cause and eliminate it.

good luck.

1899b · #13 07-15-2020, 08:57 AM

Exwife has it due to some dental malpractice. Dentist performed an extraction that an oral surgeon should have. She eventually got hooked on the Ativan and morphine she was being prescribed. It’s not a fun thing for sure.

Have you tried gabapentin?

calgarychef · #14 07-15-2020, 09:03 AM

My wife had it often for awhile.. endotpmethicin worked for her. It’s also what works on my gout by the way.

FishOutOfWater · #15 07-15-2020, 11:24 AM

Quote:

Originally Posted by 1899b

Exwife has it due to some dental malpractice. Dentist performed an extraction that an oral surgeon should have. She eventually got hooked on the Ativan and morphine she was being prescribed. It’s not a fun thing for sure.

Have you tried gabapentin?

Quote:

Originally Posted by rafternk

I had a case of Trigeminal Neuralgia 23 years ago. Was quickly shipped off to Rocky View Calgary for an MRI. Found nothing in the way of brain tumor as they wanted to rule out a possible cause for the pressure. Turns out it was dental. After a tooth extraction Trigeminal Neuralgia pain was gone. This whole process took 2 or 3 weeks and O.M.G. the pain is horrible. Keep demanding an escalation of testing and medical professionals until you get an answer.

This is very likely the cause in my case as well... Thank you for the insight.

oldgutpile · #16 07-15-2020, 12:22 PM

I fought this terrible issue about ten years ago.
Possibly the worst six months of my life. Mine was diagnosed as being shingles based, and although the epilepsy meds helped control it, there were days when I felt like a zombie, just totally unable to cope.
As time went on, the sessions subsided and I was able to slowly ween myself off of the meds. I still to this day carry some at work and in my vehicle to fight an episode if it should ever happen (had one minor episode about five years ago) I am Just that paranoid of it ever coming back.
The layman’s term for this affliction is “suicide disease” and for good cause. I went to two different dentists trying to find the cavity that wasn’t there.
In days long gone, people would rip out their teeth trying to fix the problem until ultimately ending their pain in a permanent fashion.
Stick with the epilepsy meds until you have a clear diagnosis and good luck getting it cleared up.

Burrowing Owl · #17 07-18-2020, 10:49 PM

About 20 years ago, I was to the point of slashing the side of my temple to stop the pain. It was never-ending soul destroying curse from he'll.

One day I went to see my chiropractor and said the neck adjustment was not going to happen due to the unrelenting pain that drugs didn't touch.

He had me lay on my back, head bent hanging down towards the floor. He fitted the ball of his thumb into the roof of my mouth and told me to breathe slowly and deeply. On the inhale he pushed really hard upwards to the top of my head... and on the exhale backed off on the pressure. After about 10 turns of this the pain began to ease off. After one more session of about 10 pressure hits I have been blessed with no more major pain.

Occasionally, when it feels like it might return, I do the exercise myself. According to the chiro it "helped realign the various plates and joints of the adult skull" Mumbo Jumbo? Dunno, but the blessed relief was astounding!!

Best of luck.... hang in, ok?

FishOutOfWater · #18 09-11-2020, 12:51 PM

Thanks again for the support, I appreciate it.

After another extraction, the pain has been reduced but still lingers and happens when I lay down.
I'm up to 800mg of Tegretol (Carbamazepine) per day, and constantly feel "blah".
I saw the neurologist, waiting for a CT scan now...

Cheers

tirebob · #19 09-11-2020, 01:11 PM

This may be a dumb suggestion, but if laying down triggers things much worse, can you elevate the headboard side of your bed to keep the blood flow down lower? Maybe try sleeping in a lazyboy? Nothing to do with what you have but I have GERD so bad that I often wake up in the middle of the night literally drowning from the inside. Choking so bad I can't even take in breath to cough. It really gets scary. I now have to be very careful about when I eat and volume, especially in the evening, but I started sleeping in a elevated yet reclined position to help and thankfully for my condition it does. It took a bit of getting used to by now I have trouble sleeping flat anymore.

It could maybe help your condition as well?