Shaun brearley

Thanks Jono a lot more in depth

Sometime if your lucky you can abort the attack with the energy drink or strong black coffee without having to hit the o2 . I think in the US the best energy drink is the 5hour energy shot . Sorry don't know the brand we don't get it over here in UK

I've never taken my portable o2 on a flight , but when I do fly I always take a samitriptan injection with me in my hand luggage, plus a hand full in my suitcase

Sorry can't help with cost or insurance side of things as I'm in UK and get it free on BHS over here thank God, as for what to do with it . You hit it straight away as soon as you feel attack coming on . You need a non rebreathable mask you need air flow to be minimum 15L/PM exhale all the air in your lungs then inhale as fast as you can some people hyper-ventilate to abort an attack some people dont, you will learn as you go along . Once you have managed to abort the attack stay on the o2 for an extra 10 to 15 mins to prevent the attack from returning . A good thing to do is have some energy drinks close by so when you feel an attack starting shoot the energy drink down as you heading to your o2 it helps . Don't ask my why but it does

I've always said I think it has something to do with head trauma,but I'm no doctor or neurologist so what do I know , and I guess some Cluster heads haven't had head trauma

Charles so your not on the o2 know then ?

Well sue know you come to mention it . Only joking .mine curve down the sides

Trouble with that sue is I bite my nails so I can't really tell

Got to be fair a lot of CCH say they prefer to know when they are gonna get the attacks instead of the unproductive side of ECH but I can't imagine getting hit every day . I do look forward to my CH free time

Yea not good bej . Probably thinner than skinny oops spiny

I gurn loads just before an attack the missus notices and always will say that she knows a good 15 mins b4 I get hit. I can't really afford to lose the weight as I'm stick thin as it is . I've never been above 154 pound . After my most recent cycle I dropped to 112 pounds.

Strange I lose so much weight when in cycle as I don't feel like eating plus I vomit really bad if I get hit with Kipp 9 or 10s , but I am really thirsty after an attack

Me to Jono same dates for 39 years until this years extra cycle that started end of July

I have blue eyes

Hi Charles sorry to hear about your cycle starting up buddy , I'm afraid it's the same story for all of us who are episodic my friend . As Xboss has said get a journal started it will give you a bit more of an understanding of it . Some of us who are episodic can name the date that are cycles will start same can't it's just the nature of the beast I'm afraid. I'm normally every 2 years but this year I jumped back in to cycle after only 4 month remission , so as I said the beast will do as it wants . Have you been prescribed o2 by your neurologist? Have you been prescribed a preventative such as varapamil ? Can you give us a bit more information buddy . Their are so many great people on this forum that can help you out my friend we are all here to help . The first thing I would advise is getting on to the D3 ragime it's a multi vitamin ragime put together by a great guy on here goes by the name of batch aka xxx . People on here have managed to become pain free for years just by following his D3 ragime. If you don't get pain free it will reduce the frequency and pain levels so it really is worth getting on straight away . If you go to search bar at the top of the page and type in D3 it will give you a run down of vitamins needed and loading instructions . I'm sure 1 of the experts on here ie Bej , spiny, CHF of xxx himself will read this and add some more advice plus put the D3 instructions on here for you as I'm a but useless when it comes to that sort of thing

Veteran self help groups and/or healing circles are also widespread. Less is specifically known about outcomes because these groups hold thing closely and in confidence. YES VERY CLOSE AND IN CONFIDENCE .

Well I've had CBT and I've got to say it didn't work for me as I wasn't will to talk about what I did or saw whilst in the military which caused my PTSD ,I have really bad nightmares which I call horrormares , I have done for over 20 years know It caused the break up of my first marriage .I will say that since I've used vitamin L the horrormares have subsided not completely but they have calmed down . My mental health nurse has said she has noticed a difference in me and top me to carry on with what I'm doing . I did explain to her that I was using it to treat my CH , but as she said it's also helping with my PTSD

It's got to be worth a try . It's not a drug which is should a good thing as us CHers have had enough s--t thrown inside are body's that don't seem to do Any good or if they do they gave major side effect to go with them . Just think if this works for 3 or 4 % of are community it would be a success in my eyes .

Bohm great job buddy. Sounds interesting. I'm willing to jump down any rabbit hole if it help people myself included . I'm guessing it would be a good idea to get in touch with Bob or dome1 on the board

Hi Leanne if you type in Predisone in search bar at top of page you will find some post on it . It has helped some people and not other . I wish I could help but I've never used it myself

It was Bosco travelled all over Europe free off charge .I was on holiday every week . And during ski season I would get 10 weeks skiing in free of charge , as the driver of the party u would get a free lift pass for the week

Me and the missus fly a lot when I'm out of cycle .only been hit once when we flow to Mexico, always carry triptan injections on flight with me even when out of cycle just in case . Plus when I came out of military I drove coaches all over Europe and during the winter I would have to take holiday makers to the French, Austrian,Italian and Swiss alps for ski trips .The highest was Val thorens in France which was 7545 feet never got hit whilst up there , but again I only drove those trips if out of cycle

I work with computers everyday at work. I've reduced the blue light on my screen and it hasn't help one bit .So from my experience blue light reduction doesn't help CH , but I could be wrong

Defo be interested

I've seen your incognito Facebook page buddy . Didn't want to put it out there but as you've asked I've had no choice