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ClusterBusters

Matakarap

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Matakarap last won the day on October 4 2018

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About Matakarap

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    Male
  • Location
    France
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    Music
    Diving
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  1. Matakarap

    What would you do

    Thanks Siegfried for your message, i'll try milk+curcuma+black pepper. It's good not to feel alone with the same problems. As it was impossible to find medical O2 at an efficient flow in Japan, i felt i was becoming crazy so i've just cancelled my tour and have taken the first plane back home (France). Kind of professional suicide, but i felt i was in real danger and mental health is the most important thing... So i will see my doctor this monday, and will restart the D3 regimen with everything needed. Thanks BostonDoc, i'll try to find Zolmitriptan as you said it's better than sumatriptans, but don't forget that all countries are not USA... In Japan even vitamin D3 is almost impossible to find or to ship from abroad. I'll need to go there again soon, so my only hope is to find welding O2, plus a kind of MM called "Hikageshibiretake". Japan is really late about treatment of CH. Hope the fact to cancel some important shows will make things move a little bit, thinking about all japanese Clusterheads... Yann
  2. Matakarap

    What would you do

    Ok i started yesterday, and i'll get vitamins K2 & B50 after a couple of weeks. I have honey as a boron source. Hope i'll feel better... I didn't try steroids as you said Freud, but it's something more added in the possibilities ! I'll try first everything not so chemical, and then i'll see some other ways if needed. Stay well you kind people. Yann
  3. Matakarap

    What would you do

    What i found on Amazon didn't ship to Japan, specially the D3 with high IU recommended by Batch. I'll try again, but i'm fed up with this today. Thanks again
  4. Matakarap

    What would you do

    Yes i have always some with me, and drink about 2/day or night when i feel an attack coming. It helps sometimes ! Tried 3 drugstores/pharmacy, couldn't find D3 (only Super D 1000iu) nor the missing co-factors. Any suggestions ?! Maybe some japanese people here trying the anti-inflammatory regimen... ここで日本人いますか??? Yann
  5. Matakarap

    What would you do

    I'll try another drugstore today to find the missing things. Thanks for the link about D3-50000IU but they don't ship to Japan, neither other brands... So tired !!!
  6. Matakarap

    What would you do

    Thanks for your advices. Got 3 attacks this night... Fortunately, i have 2 free days, so i went to hospital with the mask i usually use at home, but the flow seemed very low although it was written 15l/mn and it was the max they could do hère ! Then i went to a drugstore, i could find fish oil (epa-dha 241,2mg), multiple vitamin&minerals, calcium (500mg) + magnesium (250mg), zinc, but no vitamine K, no boron, and no B50. I could find only "super D" (1000 IU). Should i begin and take 10 pills of it, or should i wait to order the missing things by internet ???
  7. Matakarap

    What would you do

    Thanks so much for reading such a long post and for your replies. Really touched me. I take triptans with nasal spray (imigrane 20mg/0,1ml), i guess it's not possible to split the dose. I first have tried pills but couldn't feel no effects. I fortunately could find CBD oil, it helps to feel the shadows lighter. I'll check gamma-core, and alternate medicines you mentioned (erenumab, naproxen, topiramate / never heard about these). About D3 regimen, i meant "this" winter, as soon as i'll be back home. I've already downIoaded the file and talked to my doctor about it (the guy who first told me about CH). I understood that i need to ask for blood analyse before starting it, don't i ??? Busting seems very interesting too, just hard to find vitamin M or L in France and even more in Japan. I'll try to find some from Netherlands. And if anyone can help me about this in France, welcome ! I read interesting posts about welding O2 and appropriate regulator. It seems to be available here in Japan, not that convenient while touring and moving everyday, but can help. I'll also have an acupuncture session next month, last year it could break a 10 weeks cycle. And thanks also for deleting the previous post about holystic whatever which was obviously not serious. Yann
  8. Matakarap

    What would you do

    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 ???
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