Shaun brearley

Im having same problem can't seem to copy from youtube to post on here

How many have they given you , As CHF has said you could really do with the larger M or H tanks as the E tanks only last for 20mins i get an hout out of my H tanks . Ive managered to get my oxygen nurse to prescribe me 5 H tanks and 5 E tanks so im not on the o2 supplier all the time . Make life a litte easier

Masters of the universe such a good tune !!!! . My missus has just come up with Blockbuster from the sweet . Lol she did say sorry after saying it . Just a play on words

Sorry i know im a bit weird but i listen to hawkwind when im on a trip . As for getting rid of CH ????????

God my spelling is s__t must be the Topiramate

Topiramate is am epileptic drug mot the best drug in the world buddy . I had a rew side effects when first taking them i bit of short term memory lose and things seemed to sliw down a bit , but after a while things got better or i just got used to it or my brain just got mashed by it dont know really , i hold down a decent job so can't be that bad

Have you tried Topiramate as a preventative Axel , not saying its gonna work for you buddy , but ive used it for years know .im episodic and i have missed a couple of cycles ,again im not saying its down to the Topiramate but as i wasn't on any other meds i couldn't put it down to anything else , and of course my neurologist jumped at the chance to credit the Topiramate with me missing a couple of cycles

Sorry to say but your gonna have to forget about the cost and get OXYGEN!!!!!!

Wow this weird i managed to obtain my PADI certifcate in Mauritius in 2017 whilst on holiday can only dive up to 30 metres at the moment , but thought that id never be sble to really stretch it any further due to CH interesting

Had loads bosco. docs seem to think they will find something new everytime they give me 1 for some reason . Idiots really but if it makes them happy

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