headaches turned to chronic migraine, 2015 resection, deaf right ear

[1020b]

I am praying that someone can help with CHRONIC Migraine from AN. Headaches started month after 2015 resection. Fioricet worked. After 5 years headaches became chronic migraine. No migraine meds work. I have been treated by "the best" Neurology Clinic for a year and a half and "the best" University CSF Leak Program over a year as well as 3 other Neurologists over 5 years now. I began doing a lot of research myself last year. I cannot find help. I am on a crazy amount of Diamox and just found Gabapentin to be helpful. These are band aids though, not remedies. Tested negative for CSF Leak in 2023 and and lumbar puncture was unremarkable. Positional pain change/relief, feels like a big wet sponge, hurts turning my head.  I am worse now but they won't redo the lumbar puncture.     I have been treading water with this pain for 5 years now.  Please help as I am on disability now and my pain and symptoms fluctuate so much i can't do anything at all. I can go 2 weeks not too bad and then get pummeled for 2 days with head pain and never leave the bed.   Has ANYONE heard of this? FESS 2013, 2 concussions 1998, 2012. Disc fusion 2017, prob 20 spinal epidural facet branch blocks from 2013 to 2016.  55 yrs.  I am also single so I have NO ONE to advocate for me and I am sick all the time (sounds weak but is true).  I have been reading about food triggers. I eat pretty plain already, no sugar for instance and i don't eat out, but i will reign it in more if it even helps a fraction.  NEW here and feeling very stupid for not looking for forums or associations but glad to know i can speak with you guys now.  NO ONE around me knows ANYTHING about it.  Even after all the trouble.  JB   

[Mark F.]

Have you tried salt and caffeine?   A lot of people with chronic migraines find the combination really helps.   They say McDonald's fries and a Coke can work wonders.   Also heard putting your feet in warm water helps.   Worth a shot. 

[1020b]

Thank You Mark! Any excuse to get fries and a coke is welcome.  I am pretty sure the fioricet that helped before it was chronic had a ton of caffeine in it so caffeine sounds about right.  Thank you for the suggestions.
Jonathan

[mwatto]

I have found full spectrum CBD really helpful (I use the Humacology brand in Australia). I use the pink lable CBN for sleep and they now have a THC free CBD/CBG which is anti inflammatory and also for pain.

[Mark F.]

MWATTO,

I know you say it worked for you, and I know it's totally legal in a lot of places.  As a personal choice I will not use that for anything short of a terminal illness.   There are lots of studies about the long term side effects and risks.  I for one am very leary of anything that is so easily addictive unless it is a last resort on a terminal diagnosis.   I just had the craniotomy surgery 7 weeks ago and I stopped taking anything for pain on day 3 as I don't want any issues with stopping the meds.

Now I do not judge others or try to impose my opinion so if you're ok with it and it works for you that's great, I just like to see people try every other option first before going down the road of addictive drugs weather legal or not.

[mwatto]

Hi there I am def not addicted. This is prescribed TGA approved medical cannabis I only use it when I get nerve pain and that is not every day. I put two drops under my tongue before bed and sleep deeply. I have no side effects nor is it meant to make one high (this is a very low THC full spectrum product with all the terpenes and its the only brand I would use). For me its a useful anti inflammatory that is all. I dont smoke ,dont drink and am not taking anything else thats medication. Its prescribed and I am fully educated on it . I take it also because it wont damage my glymphatic system.   I had very bad neuroinflammation post covid and it helped then also. I am an exceptionally health orientated person who diligently reads in depth on everything from nutrition, sleep, supplements etc.

[Mark F.]

I get it and like I said if it works for you and you are ok with it that's great.  Just because something is prescribed though definitely doesn't make it non-addictive and safe.   The opioid problem here can be traced back to legally prescribed pain killers.   My concerns with it were not about getting high.  But the long term effects listed include things that I was already battling, one of the main ones being dizziness.   The acoustic neuroma was causing dizziness already and there was no way I wanted to add to that.