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Showing all posts by "beastie"

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Posted in Greater Occipital Nerve Block on 18 Feb, 2016 - 8:39 pm

Iíve had the ONB several times - in the beginning it worked really well and broke cycles - but it does very little for me now mid cycle - maybe a day or two with reduced pain.

Iím not going to bother for a year or two to see if it gets its mojo back - when I told the Neuro that he said he wants to try to put an oscillator inside my head in roughly that location instead - he said he was looking forward to having a crack at it, never having done one before icon


Posted in hoping for help on 12 Feb, 2016 - 2:06 am

Was the epilepsy drug endep? I tried that a few years back and it worked really well but only for a few months.

I would second O2 through a re-breather mask and cold air or water on the head - if you get on to it quickly the pain is usually manageable after 15-20 minutes.

I have to permanently keep away from booze and find that getting good amounts of sleep, keeping well exercised and drinking plenty of water helps reduce severity.

If you get them at night, it could be worth doing a sleep study - O2 deprivation from sleep apnea wonít do your CHs any favours.


Posted in Enjoying a small break after 10 years on 12 Feb, 2016 - 1:11 am

Hopefully. Maybe...

Hopefully yours are almost done too - good luck with it.


Posted in Enjoying a small break after 10 years on 10 Feb, 2016 - 12:25 am

Hi there,

I am enjoying the first decent break in about 10 years from chronic CH - had been averaging 300-400 per year but 2015 was a shocker with almost 600. I havenít had one in about 6 weeks and have dropped my verapamil to 240mg. I get them around the clock so I have a big sleep debt to pay off still - but it feels like itís been at least a year since I had a visit from the beast and Iím really enjoying being able to get out of the house a bit and sleeeeeeeping!

Iíve tried many things over the years, but the only ones that keep working are O2, verapamil and sometimes an occipital nerve block to try and head them off.

Currently trying to find a doctor to sponsor a TGA application for 2-bromo-lsd - and generally enjoying catching up on life while the beast is away.