Ok I have gn and sometimes when I over talk too much I get severe pain worse than normal. What does everyone take when they get breakthrough pain that gabapentin does not control? I can’t take it anymore it is driving me crazy!!!
Any answers would be greatly appreciated!
Linda
I was on tegretol for a while, it helped but wore off after a couple of months, then I had MVD surgery which cured the problem. Good luck!
Hi Linda,
I have suffered from GN for about 10 years. My Neurologist has me on Gabapentin also. Are your pains in the throat or ear? How many MG of Gabapentin does your doctor currently have you on? Hope you're feeling better soon.
Zane
I had an MVD 2 years ago but the pain has come back with a vengeance. And now I have 5th and 7th. My neurologist finally started layer caking the meds--taking several different meds together as they work differently but chemically together, in treating the pain. I am on Lyrica , Cymbalta, Zonegren and Diamox. The Lyrica was the game changer for taking away the pain. I also found that compazine or vistaril would help with pain (I know, weird, but it even took away pain post op when nothing else worked). Gabapentin never worked for me. But once again , I think you may need a couple meds together .
I have to take pain medication when; I cry, I laugh, brush my teeth, take a shower, taking on phone, when I smile, eat, chew, swallowing. Even looking down to work on the computer or read a book sets off the pain. Thank goodness for oxycontin.
So since I last was on this site this is what I have been up to regarding my GN. I underwent radiosurgery or cyberknife surgery on May 24th, this year. I have been pleased so far with it.While it is not perfect and scar tissue in the vicinity of my original decompression surgery is no doubt the reason for some pain, I am in a better way then I was. I still take the neurontin and have the Vicodin ES for sometimes but it is no way like it was. I recommend this to everyone who struggles with pain of GN or Trigeminal neuralgia too. Actually I am they think only number 6 to have had the cyberknife done. and the only one to have gone through the traditional decompression surgery then radioknife. You have nothing to lose in trying.
So......there you have it~!
NEURONTIN 400MG (3-4 times a day). It worked for me and now I take it only when I've occasional GN pain. For me GN pain started in July 2012, it took some months to diagnose what actually was wrong as my throat, ear, head pain neck all were in acute pain. It was driving me crazy too. But it will take time, be patient. I too NEURONTIN 400 for 3 months regularly. My Dr. started the dose with 2 tablets per day for 1 month, than 3...about 2 weeks and than 4 per day. wit 4 per day I was fine...I kept it 4 for almost 3 months and than gradually I reduced back to 2 and since 2 months I'm without medication. I'm fine and as and when it comes I take 2 tables for couple of days in between.
I know it is difficult but try to divert your mind. Let your family play a role, your parents, sister, brother, children to pay more attention to you and spend more time with you. Go for long walks, do prayers for healing. I believe it will get better and better once you stop paying attention to it and that can happen only if you are busy with something else.
I've gone through hell with GN pain but I did not give up and sat down crying. I tried to help myself by keeping myself busy with reading, watching TV, spend more time with family etc...try it...it works.
I had the decompression surgery as well in 2010 but then i developed symptoms again pretty severe and once again medication was getting too strong the doses to keep pain at a minimum too strong and making me way too sleepy. So, eventually a oral surgeon i worked with suggested a neurosurgeon.....son of a dentist that he works closely with. This neuro surgeon only does radio surgery in that area and we did radio surgery on me May 24............i am so happy. No....not perfect but I could tell almost immediately it was a success. They tell me that is not possible but with such a rar disorder how would they know., I am #6 only to have had the radio surgery on this and only # 1 to have had it after the decompression surgery so I am happy! Check it out you have nothing to lose,
I was taking Tegretol + Cymbalta + nerve injections prior to my MVD surgery. My surgery was, in my estimation, abut 80% successful. I am taking a new anti-epileptic, Vimpat, which is working really well. Pain-free with it. Unfortunately, it makes my hair fall out, so I am going to go back to my ENT and get another nerve injection. For me, they last about 6 months.
The doctor injects a nerve block into the GN nerve at the back of the throat - it works miracles for me. I don't know what drug he uses. The first one he did only lasted 3-4 weeks and then he ordered a stronger medicine that lasts for many months. The injection may sound awful, but I am telling you - it was less uncomfortable than . I was really nervous the first time - and it was no problem. I had trouble swallowing for about an hour as the local lidocaine spray wore off - and then I was good.
I am really surprised I don't her more people on this site saying that they tried this. For me, it was initially done as a diagnostic - if the GN was injected and my pain went away - it confirmed the diagnosis.
Good Luck!
Honestly nothing relieved my pain at all! Had MVD surgery. Feeling great now.
Sleep. I never had episodes in my sleep. Or change in prescrition. :(
Sleep. I never had episodes in my sleep. Or change in prescrition. :
I did have the MVD surgery in November 2012. Pain free ever since. Few set backs, however. Paralyzed right vocal chord, but with speech therapy, and answered prayer, I have regained my voice. I do still have an annoying cough which was so bad it herniated a disk in my back. L4/5. I had micro discectomy the end of June. Just received medical clearance for that. My breathing is still somewhat labored especially when I speak in settings of more than two people and when I speak of something I feel patiently about. This is due to the vocal fold not sealing. Perhaps walking and continued speech will improve that as well. Completely med free now. Will keep you in prayer for solutions.
Hi Annie
I had MVD surgery 6 yrs ago. It did not resolve the pain and paralyzed my left vocal cord. My pain is getting worse especially when I talk. The meds I take daily, 1800mg Gabapentin, 600mg Tramadol. 50mg Nortriptyline at bedtime and 5-500 Hydrocodon when needed.
I am currently communicating with the University of Pittsburgh Medical Center / Cranial Base Surgery Center to get an appointment for further evaluation. The cyberknife procedure helped you with pain reduction. I would be happy to reduce my pain level by 50% and reduce the meds which make me feel lethargic and slow thinking.
Where was your cyberknife procedure performed? Hope you continue to improve and thank you for sharing your information.
Jeff
annie said:
So since I last was on this site this is what I have been up to regarding my GN. I underwent radiosurgery or cyberknife surgery on May 24th, this year. I have been pleased so far with it.While it is not perfect and scar tissue in the vicinity of my original decompression surgery is no doubt the reason for some pain, I am in a better way then I was. I still take the neurontin and have the Vicodin ES for sometimes but it is no way like it was. I recommend this to everyone who struggles with pain of GN or Trigeminal neuralgia too. Actually I am they think only number 6 to have had the cyberknife done. and the only one to have gone through the traditional decompression surgery then radioknife. You have nothing to lose in trying.
So......there you have it~!
Have you tried Tegretol? I did eventually take up to 1600 mg but no pain. The dosage was every 3 hours and if a dose was missed I'd be in excruciating pain. I decided to have the MVD surgery. I had exactly the same symptoms as you.
It was the worst pain of my life.
Good luck
Dr. Duma was my neurosurgeon, Newport Beach, Ca
Pittsburg is extremely knowledgeable with this illness too.