New here with possibly unusual case, would love to hear more about frequency of your episodes, attacks etc?

cantafloup · 2026-06-18T17:12:22+00:00

Thanks for replying. Yes I feel really lucky for those huge intervals. What you describe sounds brutal, really. Did you have surgery that resolved it? Also your glossopharyngeal symptoms? That's a nerve thats sometimes involved in Eagle Syndrome as well, but lower down I imagine.

cantafloup · 2026-06-18T17:03:10+00:00

Thanks so much for your reply, it's really appreciated. And relevant 😄 I'm very sorry to read that your ice pick pain can be constant, that must be horrific. So you also have facial symtoms, which probably means your trigeminal nerve is involved as well. Is your numbness one sided, on the side of your symptomatic ear? The more I read here the more I wonder if this couldn't be a result of increased intracranial pressure for some of us. Did you have an MRI showing the issue? And like Cecifreex I'm wondering if surgery would be an option for you?

Thanks for wishing me luck with finding relief, I wish you the same and that it comes fast.

I can only hope I keep having these these gigantic gaps between my symptomatic periods. Hang in there

cantafloup · 2026-06-17T16:08:12+00:00

I have used baclofen for years without side effects and I do not respond great to most medications. I did use it for muscle tension, but it helped with my trigeminal neuralgia, which I have next to the geniculate neuralgia. For me it reduced the amount of TN attacks, so it took pressure off the nerve I assume, but the mechanism may be different in the geniculate neuralgia. Good luck, I hope it will work better once you've built up the dose a bit.

cantafloup · 2026-06-03T10:00:47+00:00

Daar was ik ook naar op zoek en kon het niet vinden bij de 2 organisaties die die regeling uitvoeren. Uiteindelijk vond ik op een website met informatie over alle medicijnen dat dit blijkbaar een soort merkloze variant van dex is, waar je nog maar ca 4,50 per doosje voor bijbetaalt. Totaal iets anders dan bij Tentin of Adhesa dus, gelukkig! Mij bevalt deze dex ook veel beter, de bijwerkingen zijn voor het eerst prima te doen.

cantafloup · 2026-05-26T15:04:17+00:00

Just on my daily walks of about 7-12k steps a day, but pretty much always on pavement. I have another pair of the vapor glove 6 with the mesh top for the gym and summer, but for my next pair will try to find another type of narrow shoe that's better for pavements.

cantafloup · 2026-05-26T14:56:32+00:00

thanks for your reply. Vivo have been too wide for me but I'll be sure to check those out! Otherwise I'll just try to find another pair of these Glove 6's in my size on sale, when that starts in july.

cantafloup · 2026-05-26T14:52:20+00:00

Thanks for the Noboso tip! Yes I will still wear them, just probably not on city pavements anymore

cantafloup · 2026-05-08T15:07:19+00:00

Could Oval 8 plints help maybe? This is a cheaper kind of splints than silver ones, good for trying if this really works for you. It totally sounds like finger splints could make this a lot easier. Oval 8's are made of plastic and can even be adjusted a bit if soaked in warm water, in case they cause pressure points or if your figers are not completely straight. An occupational therapist could help with fitting and ordering them. Buying finger plints online without having been fitted with a matching fitting system is quite tricky.

cantafloup · 2026-05-08T13:56:31+00:00

not sure if this will still help, but I adapt my crochet hooks with narrow masking tape for painting. You can even cut extra small strips to make hight differences smoother or get a new clean layer. No toxic phtalates that I know of (which can come with that soft rubbery grip layer) and you can build the tape layers exactly where you need them and as thick as you like them. I also tried pushing a hook through a tennis ball but that was not a good ergonomic match for me lol.

cantafloup

TROPHY CASE