Anyone with Trigeminal Neuralgia ? Need advice pls

[Sweetcheex76]

I was diagnosed with Trigeminal Neuralgia in the Spring and was put on Tetrigol. It really worked but the longer I was on it, the more depressed I became. Like, "I don't want to live anymore" depressed. So a few weeks ago, I weaned off Tetrigol and started Gabapentin. My mood improved, I am not so sleepy, my stomach aches are gone, I have more energy during the day, etc. But, the Trigeminal Neuralgia has come back with a vengeance. My temple is sore to the touch, my teeth hurt, I have stabbing pains in my head, hot flashes to my face and all the other neurological issues are not controlled.

I wonder if anyone here with Trigeminal Neuralgia has had luck with either drug or if you started on a low dose of Gabapentin, if you upped your dose, did it help you? I'm on a low dose and worry that upping it will put me back in a depressive state as that can be a side effect. Any feedback or to hear your experiences would be so helpful. Thanks everyone!

[Nomad]

I have atypical TN. I got a relentless boring pain. Nausea. Very bad pressure.all this on the side of my face in jaw and ear area. Some stabbing pain in ear.

It is a very long story. Many meds tried.

I ended up on a compounded cream made at a compounding pharmacy.
In the cream is: lidocaine, gabapentin and capsaicin.
I was also on Baclofen and Desipramine but rarely take those now.
I sometimes take zofran.

At first I had to take Percocet a fair amount.  Now I rarely take it.


All I use now really is the cream which I rub on my face. I had nausea for the first few days on the cream.  And it barely worked the first week.

The cream works for me now very well.

I sometimes have to take Zofran.  Once in a blue moon I have to take a Percocet due to an extraordinary circumstance.

I never tried Tegretal. Gabaentin tablets helped a little but had difficult side effects.

The cream has no side effects.

[Joe S.]

It is part of the stomach meridian. When I was having problems with it I drank Plantation Mint Tea. The tea has a calming effect on the stomach and by association the meridian. It calmed the TN pain and spasms.

I hope that you find something that helps you.

[irish]

Most of the time people tolerate an increase in the gabapentin. This is because the dosage can be upped to many milligrams a day. Everyone has a different reaction to gabapentin and it would probably be worth your while to try increasing the dose and see what happens.

You might want to get a second opinion from a neurologist and see if there is something else that would work if the gabapentin increase doesn't work. Good luck. Irish

I for got to mention another drug that is a kissing cousin of Gabapentin. It is called Lyrica and many people swear by it. It was first developed for diabetic neuropathy in feet and has since been used for other neuropathies with luck. It is more expensive that gabapentin but offers an alternative. Irish

[Spring]

When I get the TN, it is usually mild and I can mostly ignore it, thank goodness. It goes away in a few days.
When I get a bad one, doc has put me on a dos pack, and nortriptylin. After a couple days I feel much better, and it gradually goes away.

Sorry to heat that yours seems more permanent. Maybe one day it will change for you.

Spring

[Carolina]

You know, I was re-reading this post and the comments.

I don't have TN, but I know the pain can be blinding and unbearable from those I know who have it.

However, when I'm in a terrible 'flare' my jaw and teeth hurt, particularly on the upper right side.  I always begin to think I'm getting an abscess because I've had several over the years.  Yet after a few days, when the flare is better, the pain is gone!

I wonder if this is some nerve pain due to the inflammation of the flare?  I know it isn't TN, but this happens even when I'm on 3600 mg of Gabapentin (taken for Small Fiber Neuropathy in the skin of my upper body).   So it is a pain that can break through a LOT of Gabapentin.

I often create my own version of a Steroid Taper to break the flare.....

It's a wonder we can manage at all with what we have 'going on' on a daily basis.

Hugs,  Elaine

[jazzlover]

I take Cortef for my adrenals. Many years ago I decided to try to get off of it...Bad decision. I began having nerve pain in my head.

Went back on it and the pain subsided.

So maybe that will help you? I also take Curcumin for inflammation.

[vrystaat]

One of my earliest symptoms were related to Trigeminal Neuralgia. There is very little knowledge about this with Physicians. I may also have Glossopharngeal and Vagal Neuropathies. My best treatment has been with Lamotrigine. Of course, prednisone stops it in its tracks.

[Fortitude]

Hi.  I was diagnosed with trigeminal neuralgia last fall.  I tried several anticonvulsants and a few antidepressants, but I cannot tolerate them.  I was in tremendous pain, but after trying all those medications, the pain has subsided for the most part.  The nortriptyline (antidepressant and nerve pain med) worked best for the pain, but unfortunately, it caused my dry mouth to be even dryer.  Acupuncture helps too.  It might be worth a try. 

[finallyadx]

I too have trigeminal neuralgia and was given Topamax for this as well as to address my migraines I seem to get with increasing annoyance...I was taking 12.5 mg of the Topamax for about a month but had to stop - it was causing me to not be able to be out in the sun at all with my children this summer...hoping to try it again in the fall and see if I can build up a tolerance for it while not out in the blazing sun.

I have heard some pretty negative comments about lyrica, gabapentin...any of the negative comments true or are folks having good luck with these?

[Sweetcheex76]

Thanks everyone and sorry for not responding sooner. I've been in Gabapentin heck and hope it's over soon. My neurologist upped my dose from 300 mg twice a day to 600 mg twice a day. The first day, I started to run errands but quickly realized that something was wrong. I felt almost drunk and quickly drove home. With the 2nd dose that night, I felt absolutely out of it and went to sleep. As each day passed, things got much worse. Feeling wobbly progressed to barely able to stand and not being able to walk in a straight line to running into furniture, walls, etc. I became incredibly dizzy, nauseous and am on my 6th day of diarrhea. My head was pounding it felt like my brain was moving inside my head. The symptoms started about an hour after taking each Gabapentin dose. Thinking I'd adjust, I pushed on for a week. Yesterday, my doctor pulled the plug. The pounding, dizzy head is gone but the rest remains, as does the Trigeminal Neuralgia.

I told my husband that I never felt like a medication was poisoning me before. I still feel horrible but I am hoping things will get better daily. I doubt any of my Sjogren's meds are sticking with me as nothing stays in my stomach more than 5 mins so the dryness is an extra whammy. I'm aiming for a shower tomorrow. ?

[jazzlover]

Ask your doctor about an anti-inflammatory or Cortef...

Gabapentin has a LOT of side effects, that is for sure. I'm glad you are off of it , but I pray you find relief.

[Sweetcheex76]

The TN and neurological issues are back full throttle so my Dr suggested 100 mgs of Tetrigol in the morning and at night. I'll give it a try but if the depression comes back, I'm done.

[Spring]

I had a very similar reaction to the gabapenten. I did not last much more than a week. If the tegretol? tetrigal? does not work, perhaps another? Surely there is another to try. I do so hate the ones that mess with my head.