Is the Tegratol working?
Te drugstore had to order it so I haven’t started yet. I’ll keep you posted.
Laura said:
I'm postoperative day 2 success!To Vicdoc.....I hope your surgery was a huge success today! I have been thinking about you. Please let us know. Expect the fluid in your head to make it seem like you can't hear on one side. after a couple of days that will start to get better, but will be bothersome for a few weeks. Hope all is well!!!!
Yahooo!!! So glad to hear!!!
Congratulations...so glad to hear this! Wishing you continued success.
Thanks…
Just a quick update… I have been on Tegretol now for about 5 days. No major pain since starting it but have had a couple very very minor bouts but I can live with it. One curious thing is that at times it feels like my inner ear is twitching instead of the major pain I had. Has anyone else felt this or could it be a psychosomatic symptom? All in all, I am feeling better even though the Tegretol kind of wiped me out the first day or two, I will trade that for the lack of pain any day. Thanks to all for your continued support.
I sensed this with my tympanic membrane with certain throat movements, not unexpected with GPN. That is one of the areas covered by the nerve. I would hear it as a krinkle. Tegretol can cause some twitching, I had it in my hands and when I pursed my lips, I could feel twitching. My face would flush, too. Glad I'm weaning off of the meds. However, recovery from MVD surgery has been interesting, shall we say. I will post a complete recollection of my experience when it is done.
Can’t wait to hear about your recovery Vicdoc! And to Ricknot…I would often get a duller kind of odd pain when the tegretol worked…and sometimes I would feel a plucking type thing…as if the nerve was a rubberband and it was being plucked…odd…pluck, pluck…it would drive me crazy, but was better than the pain. I go back to work Tuesday…all recovered and feeling awesome!
Laura, I will post small parts of my recollections in my post. My wife says I should try to move on. Lol...
I agree…however, I think that it is good for those that may have the surgery to know what they may experience.
Hi everyone! Hope you all had a great Thanksgiving. I have to say I am very thankful this year for your support and for finding Doctors who don’t think I am crazy or a hypochondriac. I went to the neurologist last week and am scheduled for an MRI this Friday. It was amazing that he walked me through my symptoms and helped me figure out what seems to be a trigger for my condition. I told him he might think i was crazy but that a cold breeze seems to be a trigger and he said that is very possible.
The Tegretol is working well I think. I can still feel something in my ear but it is almost like a shadow of the previous pain. The Tegretol does make me very tired and restless but it is still much better than the pain. The neurologist upped my dosage and I look forward to the MRI in hopes they can see something. Thanks again to everyone here and hope you all find peace with this condition. By the way, Charlie Rose had a whole program on pain yesterday that was very interesting. Check it out online if you can find it.
Wind blowing on my ear was a huge problem for me the last few years. That was a huge trigger. Glad to hear the tegretal is working for you, although it makes you tired. It helped me for along time , but I kept having to adjust the dose higher. Good Luck to you and keep us updated.
Ricknot, Glad to hear you found a neurologist who will listen and work with you! Don’t be discouraged if your MRI doesn’t show anything. Mine didn’t show a thing, but when the neurosurgeon got in there he found a blood vessel was touching the nerve. Since surgery I have had no shocks at all! Good luck to you.
Ungortunately, welcome. I am sorry you are having GPN oproblems. This is my same exact story. It is a hard road to be taking. I am 2.5 years in with many treatments later and now having MVD surgery in 2 weeks. Please read my blogs and hopefully you won't have to go through so much before having it corrected. Good Luck. Ask your doctor about Nucynta ER. It has been the most beneficial pain relief for me. I do not have any high feelings from it. Unlike the regualar Nucynta and other pain meds.
Do you all get headaches as well? Or is it the Tegretol? Or am I just lucky?
You may be having tension headaches coming from your neck the same side of the pain in the ear. I developed headaches with the GPN and now after having the MVD surgery, I’m still struggling with just the headaches from the tension in my neck that wasn’t treated before. Get it under control now before it gets out of control like me!
Just what I need... And this is just one year after I had a compressed spinal nerve that required surgery.
tinabh said:
You may be having tension headaches coming from your neck the same side of the pain in the ear. I developed headaches with the GPN and now after having the MVD surgery, I'm still struggling with just the headaches from the tension in my neck that wasn't treated before. Get it under control now before it gets out of control like me!
Hello!
It took 3 years for me to be diagnosed correctly. Pain Medication does not help with Glosso or Neuralgia. The only medication that helped me and many others is Tegretol, an anti- seizure medicine. Hopefully, you will only need to take it a couple times a day. I had to take it every 3 hours and then opted for the MVD sugery.
I highly recommend becoming a member of TNA, it is an amazing organization for Trigiminal and Glossoharyngeal Neuralgia.
I hope this helps. Good luck