Shaun brearley

Mri lol i hot mixed up i was on about ct scans idiot

You never had mri scan xboss wow . . First thing i had .ive had this for nearly 40 years now and the docs over here still insist on giving me then . I think they are still looking for a brain Ive had about 15 i think ive lost count

Shit damage to the brain . I wont tell the missus . She already thinks im mad . That will just confirm it

As ive said in a previous post on a different subject when im at home my attacks are regular every 3 hours but im relaxed at home . When im at work im highly stressed and that seems to keep the beast away . So I'd say that changes the times of my attacks for some reason . I have stayed awake all night to try to reduce my attacks as that when i get hit with my worst attacks but it didn't wirk for me 0135 every morning the beast would hit me with aa 3 hour kipp 10 kicking me round my bedroom . Got to the stage where I'd set my arlarm for midnight so i could go down stairs so didnt wake the rest of family up

As freud has said LSD is hardly ever tested for . Im a transport manager in uk when needed i drive a coach . Not within a couple of days of taking it but after 3 to 4 days im ok

Buddy really look at busting . It works for so many people on here . Mm or LSD. LsD is the best if you can get hold of it

I have to be fair when im at work i dont get as many attacks . My work is stressful .im running around alot . When im home relaxing i get most of my attacks . So may be something there

Hi devonrex. Im on Topiramate have been for last 10 years know . Im lucky im episodic. The trick with toprimate is you need to have them in your body 3 months b4 cycle starts and you need to drink plenty of water to stop kidney stones . Not saying it stops cycles but i have skipped a couple of cycles.

Just so you know in the last 12 mouths ive had 2 mouths pain free and had between 8 to 14 attacks aday most attacks during the night . Im exhausted due to no sleep. Ive had CH since i was 13 im know 52 . Wasn't diagnosed till i was in my 30s so had to cope with no med till then so yes ive suffered to buddy . Like i said only trying to help

I understand mate ,im not judging you believe me and yes ive been at that point where my mind has wondered in that direction ,but again life is precious as a ex practicing heart surgeon you should understand that . You saved lives. Im just trying to help . I will keep my mouth shut sorry if you took my post the wrong way

I understand buddy .when i first started getting them when i was 13 years old i thought i was going to die ., but we all know its not going to kill us

Buddy seriously get euthanasia out of you head . Plus from what ive seen on posts the gamma knife isn't a nice way to go plus not great results . You can get through this . Ive got kids at home i work its hard i understand that . Im lucky as im episodic not chronic like you it must be really hard . Plus i understand the cost for meds in US is ridiculous where in UK we get it free you can't just give up , life is to precious .

Looks like the welding o2 is the way to go in the US

Im sorry your finding it so hard to work . Im a transport manager for the biggest family run coach company in UK . We operate 165 coaches all over UK and europe ive struggled during this last CH cycle had to take a bit of time off work , but my boss is really understanding so im really lucky . I can't really give any advice as ive always been employed whilst suffering with this condition even when in military for 7 years

My god that is ridiculous. I'm so shocked at how much it cost in US for medical supplies. We are so lucky over here in UK . I get my o2 supplied at no cost

Everything is so expensive in US for you guys . I feel so sorry for you . We are lucky over here in UK even tho we do complain alot

Sorry people got to try to get some sleep hoping for a pain free night after vitimin L party in friday it 0014 over here in uk im in work at 0930

Just doesn't make sense jon019

Topic phama company buddy they run the world. Its all about money. Thats why we have no proper treatment for CH Not enough of us CH sufferers in world to buy medication of them for them to bother developing 1 for us .

Sound thanks a lot NHS report over here has stated that it is going to give CH sufferers there lives back lol . They state that the cost is only £2700 per year . First 3 months is free to see if it work , if not you hand it back . . My neurologist tried to get me on it but local heath authority won't fund it . Makes you laugh really they fund triptan injections at £58 a shot . If i used them all the time id cost NHS thousands every year . But if your rite and results are not that good i will stay away from it . Cheers for info CHFather

Hi every1 just a quick 1 to you lot over in US has any of you had the pleasure of this so called Gammacore , being rolled out in UK know Just wanted a bit of feedback on it if any as my nuro is taking about it. But can't get funding for it

Organic Ginger root capsules 1100MG off amazon work wonders the beast has come back to hit me bosco but still no shadow since ive been taking these . 2 a day

Lol . If we could i bet he would find a way to cause us pain !!!!!

I wait to be pain free for 3 week b4 a drink as its 1 of my biggest triggers and it gives me 1 of my biggest attacks i have

Hi bosco , im the same i managed to bust mine with LSD had a few days pain free, thought id shut (not shit ) the beast away but he came back to hit me big time , not panicking about it gonna give busting another go but also now been on D3 for last 3 days . Keep smiling through you will get there as we all will