Hi all,
I have recently been diagnosed after 6 yrs of this daily. I saw two neouros in that time that said no, can’t be migraine not all the time. I’ve since learnt yes it can. Basically I have no neurologist. Anyone got any idea where to go from here? Thanks
Hi Fedup
I too have constant relentless daily migraine, complicated by also having Glossopharyngeal neuralgia. My last stint of migraine has lasted 7 months unabated. I was hospitalised to try and stop the pain with an 11 day non-stop ketamine infusion and previously lidocaine infusions. Didn’t work. I am in WA. I am under the exceptional care of a Dr David Holthouse, pain management specialist and neurosurgeon (and guru) and Dr Julian Rodrigues, neurologist. The latter is now looking after the chronic migraine and running me through a series of preventative drugs and other drugs to cope with major exceptional attacks. We have also just started botox. Whilst in hospital all opiates/opiods were withdrawn - drugs I was on for the neuralgia. They initially thought it was just rebound migraine - but unfortunately not. I wonder does this help at all? I really hope so. xx
Sorry Sfk that you’re dealing with this too. I’m glad u have good Drs to help u. The hospital stint sounds pretty scary. It’s such a vicious thing to suffer from. I’m at a real loss who to go to. To think it’s taken 6 yrs to be diagnosed is plain depressing. Thankyou for the info. I hope u have some better days ahead x
Btw Botox was mentioned for me last visit too, still toying with the idea and again need a dr to administer it.
I’d give the botox a shot. I’ve now had my second treatment and I am in much better shape than I was four months ago. I’ve even had pain free days. Give it a whirl? x
That’s great to hear Sfk glad it’s helped. I go this afty for first one…nervous x
Good luck love. Don’t be nervous. It’s really fine. Just wriggle your toes to distract yourself and breathe deeply. You’ll be totally cool. It all sounds much worse than it is. Don’t expect too much from the first treatment. All my fingers crossed for you. xxx
Thanks so much Kerry, very kind x it all went well, didn’t hurt. Had hairline and temples and couple in back of head. I’m crossing my fingers it helps long term
Good news. How many injections did you have? My neurologist does 46! I presume your going in for another round in 3 months time and having to keep a migraine symptom/pain diary? Fingers crossed, fingers crossed…xx
Wow 46!!! I bet u felt like a pin cushion yikes! I only had 15…erring on side of caution…back again in 3 months yep. Am glad ur finding some relief x
Oh yes and keeping a diary too 