It has been ages, yes, years have passed! And I'm good! After switching some years ago to melatonin pills (not liquid) I just ended taking those at night a few weeks ago. Of course I wonder if it will affect Horton. Or rather, the lack of it. But it looks good. The spring sun is in my eyes often (my old trigger), and wearing my shades I feel - nothing! I'm so grateful. Other than melatonine I have used my "sun lamp" in the autumns to set the body's own clock straight. That I will pick up next autumn, too. But it seems like I can leave the melatonin for now. Thumbs up.
During these years the ache has tried to return, even at night when it used to hit so bad, but every time that I've gotten that tingling feeling of a cluster headache coming up (like feeling my tongue sticked to the teeth, the neck getting stiff on one side etc), I've taken a small dose (1 mg) Diapam (or Diazepam as it's called, I've learned). And meditated. And every time this combination has helped. One time I used Sirdalud, a muscle relaxant, instead of Diapam, and that worked too. I just have to get my body relaxed, just as my mind. Get totally awake, but totally in peace. All in all I've turned to Diapam maybe eight times per year, especially when the sun light hours change. I can live with that, no problem. One can say that Horton knocks and wants to stick his head in, but I just tell it through the door to breathe a little and leave in steady pace since I don't want it anymore. It might sound weird but I've kind of promised myself to take care of myself instead. To avoid the triggers and listen to every signal my body sends me. A little yoga kind of life, if you wish. But of course, if this does not work I will be disappointed. But I've told myself to not blame myself if Horton returns. Cluster headache is nobody's fault, ever.
And of course, I'm very happy about these peaceful years. I have met so many chronic cluster heads in my years - many did not return to the meetings that many times - that I feel not a gratitude but a soldierly honour-kind-of-feeling. After each autumn and spring I feel like a survivor of great war threat, and like a happy-bouncing lottery winner, all at the same time. Many are not this lucky.
I have no new advise, but I want to give hope to those who suffer now. Even though I know that Horton is for life, there might be many years of peace. I hope my peace lasts for as long as I live, but I never take a painless day for granted.
All the best to you!
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Finnish:
Halusin kirjoittaa tänne pitkästä aikaa, että kaikki on hyvin! Horton on pysynyt poissa. Cluster headache - tämä sarjoittainen päänsärky - ei ole enää riesana. Noin kahdeksan kertaa vuodessa se yrittää tulla, mutta pidän tuntosarvet hereillä enkä anna sen päästä lähelle. Apunani on ollut kirkasvalolamppu ja melatoniini nämä vuodet. Säryn olen saanut pois alkuunsa Diapamilla (1 mg) ja meditoinnilla ne kerrat, kun se on yrittänyt rynnätä päälle. Myös Sirdaludia olen kokeillut, ja se toimi kuten Diapam. Tärkeintä minulle on saada keho ja ajatukset yhtä rennoiksi mahdollisimman nopeasti, jos alan tuntea jotain, kuten sen että kieleni painautuu hampaisiin tai niskani jännittyy tietyllä Horton-tavalla. Joten paljon toivoa teille, jotka luette tätä ja mietitte, että onko tästä tietä ulos. Ulos-reittiä en usko vielä löytäneeni, mutta hyvän kiertotien, joka on jatkunut nyt jo uskomattoman monta vuotta.
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Swedish:
Jag ville bara berätta att jag mår utmärkt. Efter ett antal år med minimal medicinering och en lugn inställning till det mesta har jag kunnat njuta av livet och nästan glömma Horton. Visst har den försökt knacka på några gånger, men jag har ett "recept" som hjälper: En liten gnutta Diapam (1 mg) och meditation. Det använder jag mig av vår som höst, ca 8 gånger ett milligram, totalt, på ett år. Det kan jag leva med. Jag har medvetet reglerat dygnsrytm och solljus, med hjälp av melatonin och "sollampa" samt solglasögon vid behov, och försökt ta hand om mig så att jag stannar upp och luktar på blommorna precis som jag brukade göra alltid efter en period av cluster headache då länge sen. Nu har jag trappat ner melatoninet till noll, men sollampan gräver jag nog fram på hösten sen, när kvällarna blir mörka igen :) Önskar dig välmående och lycka till!
