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ClusterBusters

DitkoNL

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DitkoNL last won the day on May 17 2016

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About DitkoNL

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    Female
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    Amsterdam NL
  1. DitkoNL

    link between drug abuse and CH

    Hi Ricardo, I appreciate your reply (and warning, which I fully support). As a matter of fact I did. I've done some recreational use of cocaine in the past so I considered it worth a try. Shortly after taking it I experienced one of the most excruciating hits I ever had, so that's it for me, never again. Whatever the reports may say, it's obviously not for me. On the other hand, I have the impression that Amphetamine is helpful to keep the beast at bay (compare to coffee/energy drink). Evil side effect is that it keeps you awake till exhaustion; in the end we all have to face sleep & waking up with The Pain. I count myself lucky. I'm off the hook again, so far my episodes don't last longer then six weeks. Best, Dit
  2. DitkoNL

    5 hour energy

    I always have some energy drinks handy in case I have a daytime hit (preferrably NOT Redbull, I hate the taste). The colder, the better. Most of them have 32 mg/100 cl caffeine I believe. Ever since my current episode started I tried to get concentrated energy shots, tiny plastic bottles with orange label, but it seems they don't sell them anymore in the Netherlands. Which is kinda funny because shrooms are not a problem. It's a strange world we live in.
  3. DitkoNL

    Introducing myself

    Thanks everyone for your advice & replies. And welcome to you Kelly. I put the chiro and the acupuncture on hold for now. My first priority now is finding a good neurologist, getting the oxygen & maybe Verapamil so I can quit the Sumatriptan. I'll also look into the vit. D and Buster files. I got some material from a friend who works in a hospital and Sunday I last night managed to split two injections into five, of 0,2 ml each. Administering the injection wasn't as scary as I thought it would be and the smaller dose was just as effective. The best part is that didn't have an attack last night so I'm keeping my fingers crossed that the end of this cluster is in sight. Thanks y'all for being here. Namaste
  4. DitkoNL

    link between drug abuse and CH

    Hi, for what it's worth: I tried marijuana against the pain over the past weeks and it does nothing for me. I read somewhere that cocaine can immediately provoke a cluster attack.
  5. DitkoNL

    Introducing myself

    Hi, I'm Dit and I'm 55. I'm here to learn, share and offer my experiences and support. I had my first cluster episode in spring 2003. Before it really started, I woke up one day with a sudden rash all over my body (no itch). That went away over the next couple of days. Then, within a weeks time, all of my joints were suddenly flaring up. I remember that especially my hands and feet were sore. So I went to my GP, who did some bloodwork on reumatism, but he ruled that out. By the time the results were there, things were back to normal. I was puzzled about these unfamiliar conditions in such a short time frame, but my GP said he saw no connection and considered them to be 'freak phenomena'. Then the Monster came out. He stayed with me for 6 weeks and was just going in remission when I was finally properly diagnosed. I had no clue about CH and thought they were migraine attacks, so I got Imigran tablets that didn't do much for me. The pain would wake me up every night around 2 AM and keep me busy for a few hours. I had to wait 5 weeks before I could see a neurologist, and he told me I had most likely suffered from CH, given all my symptoms (timing, location and duration of the pain, droopy eyelid, nasal congestion, urge to move, what have you). So I read up on it and it all made sense, even the flare and the joint pain, which may have been connected with histamine release. I dreaded the next spring, but the monster stayed away. Guess I'm one of the lucky few because the Monster stayed away all those years. Until this spring that is. He returned early April and he's got the same agenda. He visits me every night around 2 AM, but this time I have Sumatriptan injections from my current GP. They do the trick within 5 minutes. The only difference is that I see no signs of remission this time and I'm past my 6 weeks now. Instead, I get more attacks, once ore twice during the day. But when I'm awake I can usually fight them off with coffee, energy drink, movement and distraction. I know there isn't an unlimited supply of triptans so I keep those for the night attacks, they are the worst. This coming week, I have another appointment with my GP to discuss a more structural approach. I've seen my chiropractor twice. He said my atlas (C2) was mis-aligned but so far his corrections have not had any effect on my condition. I'm looking into acupunctural treatment as well. In fact I'm looking into anything that can help me to fight back the Monster. I'm interested in your experiences. Thank you.
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