Hi everyone i'm lost. Episodic CH since 2014 (first 3 cycles misdiagnosed as sinusite, even going to emergency hospital supposed to have the best special service about CH in Paris, sadly common story...) to chronic from the beginning of this year (1 to 4 hits everyday or night). It hurts so much. I have 02 at home, my tank became my best friend, unfortunately more important than my wife or mother. My neuro prescribed Verapamil, but for many reasons i don't trust her, and i don't want to destroy other parts of my body with side effects, i'll think about it again if someday O2 become not efficient anymore (actually my worst nightmare). Reading your messages helped me a lot last month, i feel less lonely since i found this website. I read every single post, glad to be part of a community for the first time ever. It gaves me hope to learn about busting, or the D3 regimen (will try it next winter if still alive). Thank all of you. But.
I'm a musician, and i've to be out of home for touring a lot. July, triptans everyday, i felt my mood changing as well as it became hard to concentrate on music. Lost weight again. Annoying shadows+side effects like if i were out of my body. I completely quit drinking alcohol as i realized it was one my triggers. Gave a try on energy drinks, sometimes it helps to abort low level hits, as well as vaping CBD (no nicotine, no flavour). While touring in Japan i heard about Kampo (chinese herbal medecine) and met a doctor who seems to know CH. I felt relief after one week, still in hell but less warm, and 5 PF days (longest period since 7 months). But expensive and i finished my 6 weeks doses. Back home in August after the worst 12h plane trip in my life (last year i took 18 planes, 14 boats, and more trains, more than 110000km, so much jetlag and quick season's changes from north to south hemisphere...), really imagining how it would have been possible to jump out without risks for other passengers (couldn't find the way). Still no alcohol, old friends thinking i'm not funny or talkative anymore. I don't care, i've got O2. Then touring again, until november. Japan only this time, important recording at the end of this month. But i'm really unconfortable, as it seems impossible to have 02 out of hospital here, and i can't even carry a tank as we're moving everyday day with lots of stuff. Triptans makes me feel bad after attacks (belly hurts, thinking slow, depressed feeling, stoned like a zombie). I just feel like coming back home, stopping my work, being alone. Nobody around me seems to understand how tough it is. Social life became so difficult, i can't stand people talking to me, just answering "ahan, ahan" or trying to smile when a story seems funny to other people. Everyday losing patience and curiosity. My dreamy life (people think it's so cool to travel round the world to play music) became torture. I didn't use to make exagerated sentences with strong words but i think it's accurate now.
Do you think i should suffer but keep on working hard, or i'd better go back home and marry my O2 tank to feel better ? What would you do ?
I'm ready to lose everything, to avoid becoming crazy.
Mata karap means broken head in bengali language, a term used to qualify people born with heavy mental troubles.
In japanese, CH is called "gunpatsu zutsu" which means repeated occurency headaches. Hard to explain reality to people ! And i'm fed up to explain again and again why i'm not that polite, or to lie about why i'm not drinking anymore, or not able to eat ramen or chinese food... Air conditioner is also a quick trigger for me, and it's everywhere here !
Yann from France, 35 yo, half-life smoker, now on a tiny bed in a ferry boat's dormitory for 6-7h to reach Miyakejima. Writing this after crying my deepest tears and trying not to shout in order to avoid waking everybody up. Just not enough force to jump into the sea and forget the pain, but the will is deeply here. Not my habit to complain, but this time i reached my psychological strength limit. Once again, what would you do ???