I’d just like to connect with other people who have GN . We might get each other . I’m interested in hearimg different things others have tried .
I’ve had it for 2.5 years now. It seems to be progressing quickly. The meds only work for a little while each . I’m on the 6th one now. I’ve thought i was At the end of my rope so many times now . I don’t understand why we have to suffer so much before we get real treatment .
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Hi, I have GN! Like you I’ve had it for a while, over three years now. I had a MVD in Nov 15 and it helped with the TN but didn’t help at all with the GN. I take a cocktail of Gabapentin, Phenytoin and Oxcarbazine. The meds help a small amount . I keep getting told that because it’s rare there is very little they know about it so there’s not much treatment available. What hospital are you under? I’m off to see a neurologist today which I’ve never seen before, my neurosurgeon has referred me to see if they can help. I’ll let you know. Hope you have a pain free day xx
I was starting to wonder if I was the only one . I just started seeing a nero in sanfransisco . He did say there was a surgery , mvd. I’ve recently been taking carbamazapine. But every time I try a pill it only works for a month or two . Have your meds been working for a length of time ? On this forum i read that some people use a topical ? Have tried anything like that ?
So you had tn and gn , geeze how does one get so lucky ? My step dad had tn and it was horrible. At least you got some relief from that. I’m always asking myself why WHY . What did I do ? Was there any cause for yours or dis you just wake up one day with it ?
I wonder what we have in common ?
I’m 33 I have 3 kids , live in Humboldt county , very northern CA . Had one cad accident when i was 16 , broke windshield with my forehead. I’ve had chronic headaches since my 20’s . But have generally been healthy .
One day it just started with a small stabbing behind my ear. I was giving allergy meds first , it actually helped for a week . Doctors had no idea what it was . One night I was balling to my husbamd to HELP me I was lossing my mind. He looked in a medical book that was in our house and found occipital nero. We took that to my doc and he agreed . So eventually I saw a real neurologist and he thought the same thing and proceeded to give me pills and more pills and an ON nerve block shot . It didn’t work. When I saw the guy in Sf he have me the new diagnosis of GN . That was in may. I thought I liked them , but I called in tears , in a lot of pain that had been going on for over a week non-stop. His assistant was very insensitive. My general doc told me I could speed things up by getting a referral to nero surgery. That woman asked me WHY wanted the referral. Why omg lady .
I doubled the amount of carbamazapine I was taking and it finally started to work. When my pain comes back it’s almost non stop , go to sleep with it wake up with it . It gets worse and less through out the day with no signs of why .
What about you ?
I’m 37, four boys, had TN off and on, with the worst bouts starting around your age. With the accident in your background, headaches starting in your 20’s, and now GN, consider trying upper cervical chiropractic…has really helped me.
I’ve tried chiropractic work, it didn’t help . I’m going to see an ear nose and throat guy and physical therapy just to be sure. But i am finally getting a referral to nero surgery!
It does feel as though we’re the only ones on the planet suffering doesn’t it?! I had a MVD in Nov 2015. It helped with the TN but made no difference to the GN unfortunately and that has got progressively worse . As I said I was seeing a neurologist on Monday (referred from neurosurgeon). She’s basically looking at how we manage the pain better . She wasn’t happy that I’d been on Phenytoin since last November so I’m now on a plan to get off that as long term use isn’t good for you apparently. Her plan now is to Indomethacin which is a type of anti inflammatory for a few weeks then change into something else long term, if still really suffering then have local anaesthetic injections in different areas of head! At least there’s a plan!
I’m currently on 900 mg Gabapentin 3x day , Phenytoin 300mg 2x day and Oxcarbmezapine 150mg 2xday. She thinks I’ll prob have to stay in the Gabapentin and Oxcarb.
There are lots of drugs out there and it is a case unfortunately of finding one that works for you. It’s the side effects of them that I hate, however you just have to try your best to get through them .
My 10 y.o daughter just diagnosed geniculate neuralgia. She’s been having the stabbing pain in right ear since February 27th 2018. Our neurosurgeon advice us to have a micro surgery to cut her intermedius nerve with minor side effect. But we are still thinking about it. Have anyone ever perform this surgery for treating GN?
I was diagnosed with GNa few months ago. It started very suddenly and went to excruciating within 48 hours. I take Trileptal and Elavil and I am lucky to have total pain control. I hope it lasts. I deal with anxiety about the meds losing effectiveness. I’m sorry the rest of you are also suffering but it is helpful to know you are there.
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Why on earth would such a young child get something so horrible, I’m so sorry you guys . I would recommend starting on lower doses then recommended on a lot of that stuff . It all makes you feel terrible . And it looses it’s effectiveness, so the lower dose you start out on the more room you have to go up . Good luck you guys
I suffered for 3 years , tried so many meds . Carbamazapine made me want to kill myself . I stopped all meds and started taking exercise classes 3 days a week , the PAIN IS GONE as long as I keep working out. It’s a miracle. If I stop going after a few days the pain comes back so and then goes away again if I workout. So I know it’s the exercise. It’s worth a try. I wish someone else would try it . I’ve called all my old doctors and have told every one I know. Exercise exercise exercise !!!
I wonder what us with GN have in common ? Why? What did this to us ?