Trigeminal Neuralgia

Brain and nerves
1

I have been diagnose with Trigeminal Neuralgia and am taking 800mg carbamazepine along with OxyContin.  Will the druggy feeling go away? The pain is unbearable.

2

No I don't think the "druggy" feeling will go away. If you are taking those dosages I would suggest that you explore surgical options.  Long term i don't think you'll be happy if you continue with the drug remedy. 

3

I would stop the Oxycontin (with the Doctor's help).  From my research, it doesn't help the pain and will compound the problem as you will get hooked on it.  Have you tried Tegretol?

4

Dear Hank, I feel your pain literally!  I found that the drugs stay with you and did everything I could to get off!  Found the guy in Oregon where I live who does the sugeries to get rid of the pain. He did radio frequency surgery (burning the nerve) which was a quick recovery and worked for several years so he did it again.  I have MS. So he believes there is no other surgery that would work for me. And I can do this forever if necessary.  No drugs for me.  The surgery isn't perfect ( have a numb jaw) but I don't care. The TN is gone and that is all I care about and you know why!  How did we get so "lucky"?  I say, find a surgeon, research it on line and learn, and get off those awful drugs!

5

Thank You...you are right....Hank

6

Yes, the Oxyc is not working...thank you for the info...Hank

7

I too have MS and and live in Oregon.  Will do the research...thanks...Hank

8

OHSU..DR. Kim Burchiel

9

Hi Hank. Sorry to hear of your suffering. I did not get used to the side affects, although I took it with pregabalin. I stopped as soon as the pain went into remission. I have been advised by my consultant next time however to take oxycarbamazepine. It's the sister drug. Newer on the market and more expensive but apparently less side affects. You could ask your consultant about it?

May I ask what your MS symptoms are please? My MRI was clear but I am experiencing numbness and tight squeezing sensations in my left arm, fingers, toes and leg. All the same side as my TN pain. The consultant suggests trigeminal neuropathy as well as TN but no definitive conclusion.

Thanks

Janine

10

Hi Hank, sorry you are feeling bad.

My Dad was fine on 200mg carbamazepine but it stopped working and he had to up his dose. I could tell when he had taken 300mg!

By Christmas he was on 600mg and seeing double, he felt so ill and it didn't control the pains. By January he was starting to get some relief and was getting used to the drug. He had gamma knife surgery mid January but had to keep up the dose of 500mg. He finally got use to the dose but luckily the treatment seems to have worked he is gradually reducing the dose and is back down to 300mg.

Ultimately he did get used to the drowsy, zombie feeling. But it took quite a while.

I hope that you find relief soon

11

Hi Hank,  If things do not improve fast I would also suggest surgery.  My pain is gone after Balloon Compression surgery and if it comes back I would want Radio frequency surgery like alicot has mentioned.  Studies show it lasts years longer pain-free although both of these are out-patient and can be repeated.  Hope this helps! 

12

Hi...my symptoms with the TN is great burning pain above the left temple that travels to the back of the scalp. It comes in waves of pain.  It's like a headache x 10.  I am in my last phase of MS and can still walk okay. The reason why I can still walk is because of my simple diet. No alcohol, no red meat and no fried foods. My numbness went away and have much less symptons than others with MS. I was diagnose in the 90's.

For the meds I am taking...none..untill this TN.  I will probably find the solution to end this TN by exploring a correct CBD(thc) combo. Do not get caught up with all these fancy drugs.  

Hank

13

Hank, I found that at each increase of dose, I felt a bit weird but it went away after a few days.  Seems a bit extreme to start on such a high dose but maybe that's better in the long run, then when its under control you may be able to gradually decrease the dose.  I'm not a fan of any type of surgery so determined to avoid it if at all possible.

14

Thanks for the insight into your MS Hank.  My case seems to have baffled the consultants as I have a combination of TN [atypical], trigeminal neuropathy and cluster headaches.  Tests are still inconclusive for MS.  I will take on board your comments about diet.

Good luck with your meds.  I agree they all come with side affects so stay clear as much as possibble.

Janine