KenH

Hi Moxie, thanks for your reply and info about your busting experciences. What interests me a lot: how do you manage your cluster headaches while sailing?

Hi Spiny, thanks, you're right. Writing it down and talking about it with other clusterpeople helps a lot. "You can't control the situation but you can control your response..." hits the spot for me! At the moment I'm trying to tame the beast with microdoses of magic truffels (following 'the method') and I look forward to the outcome. I will soon ask for melatonin too, when I see my doc - the ones free of prescription are too soft: 0,3 mg - makes a lot of sense to me with my delayed pattern of sleep. Urs, interesting train of thoughts... Regarding Europe vs the US I'm not sure if the one or the other health system is better than the other. In Belgium we do have a pretty good health system, OK in terms of quality and service, and very good in terms of costs. I didn't pay much for my MRA scan for example (without having to bring in a private insurance). Also we have a few fine universities and high end hospitals. But maybe there is a lack of funding for investigation (read: money to earn?) on the subject. What I do know is that there aren't tons of good/real headache specialists among neurologists. And the few specialists sometimes work alone on the subject and don't have enough cases and figures to compare with. In comparison to the US which has differences between states, Europe is still a Tower of Babel: lots of different languages, health systems, government structures,... That's all not in favor of data and knowledge exchange. In terms of out-of-the-box thinking I think a lot of Belgians perform well too. But I can't speak for all of them, let alone for all "Europeans" But I do have the impression that the medical world is a little (and maybe very) conservative, and not eager to try out or experiment... (Although my doc was willing to experiment on me with the lithium )

Thanks! In fact, I have a prescription of them, but was indeed worrying that they would take too long to kick in - the zolmitriptans I normally take are melting tablets, but the prescripted sumitriptans (100mg I think) aren't. Maybe I could sniff them? (just joking!) 10 minutes is fine for me. Even the melting zolmitriptans take 30 minutes (faster with red bull of course). I think I pay like 1,5 - 2 euro's / pill (box of 24). Cheers!

Thank you both for your many advices! For the next episode I'll ask for oxygen. Don't know why three different neurologists haven't been prescribing it! It is possible to get in Belgium, that I know for sure. Concerning the triptan pills: that's a personal choice. The doctors already warned me that they don't kick in that fast - but injections and nasal sprays are very expensive in Belgium (despite our good health system). For my frequency, when I take the pills in time combined with caffeine, it is OK for nightly home situations - though I would prefer oxygen for those cases. And maybe some injections/nasal solutions for on the go. Melatonin and D3: I'll check for that asap. Melatonin is free of prescription since 2016 (funny because in the US it is free to buy in the supermarket for ages!). It makes sense for me because in the past I had some troubles falling asleep and disturbed REM-sleep. I also messed up my biorhythm pretty well in my college/university years - so maybe there is a connection there. Forgot to mention in my previous post: I tried some microdoses of mushrooms a few times, but didn't follow the cluster buster method yet. So still something to try out. I still have some mushrooms somewhere (you can still buy them in the neighbouring Netherlands). Regarding my anxiety: writing a post here did well to it, as did your answers!!! The Lithium: I'm not going to try that because of the side effects and risks. I would consider it when I wouldn't have any other options, or become chronic. I don't know what went wrong with the last neurologist. He has a good reputation (in general) and treats a lot of (?) cluster patients. But especially chronic cases - maybe that's part of the problem. Also it seems like he was more eager to treat my depression/anxiety symptoms - as if it's possible to diagnose me on that in ten minutes (yeah right!) I still don't get it because we have a very good health care system, well trained physicians, good hospitals... I think it's the combination of a complex syndrome combined with small patient populations so a lack of critical mass. Thanks again!

Hello everybody. I’m 37 and I’ve been suffering from episodic cluster headaches since the age of 24 or so. (Sorry for my incorrect English from time to time - my mother tongue is Dutch.) In comparison to some other cluster heads (don’t mean to be harsh!) I’m pretty lucky having only one episode each year / year and a half. In these episodes I have 3-5 attacks a week, all taking off at night. I have all the symptoms: unilateral pain, neck pain, ear pain, eye pain, droopy eye, runny nose, can’t sit still… For years I wasn’t diagnosed properly (migraine, tension headache, sinus problems…) and I didn’t take any abortive drugs (except of not working pain killers like Paracetamol and Ibuprofen). I tried Verapamil two or three times as a preventive measure, but we never adjusted the dose properly, so I always took 240mg/day. Sometimes it seemed to help, other times it didn’t. It’s difficult to say because sometimes it already can have been remission starting, sometimes I started to take them late in my cycle, I forgot to take them a lot… So I’m not sure if it’s effective for me or not. Drinking alcohol has always been a trigger for me during episodes. For about 4 years now I’ve been taking Zolmitriptan (5mg) orally to abort attacks - combined with coffee or red bull. It takes a while to work (30-45 minutes), but I can survive. My clusters never were a pleasant thing to have, but I managed to cope with them - although I was exhausted at the end of every episode . I went to a neurologist for three times, but I always went when I was out of an episode (so we never got far in trying out new things). At the moment I’m having a strange episode: When it started six weeks ago I stopped drinking alcohol immediately. As a result, I only have 1 ‘real’ attack a week. I’m having a lot of shadows, and sometimes ‘minor’ attacks (kip scale 3-4) of which I can get rid of drinking coffee, massaging neck and head, pressing the temple area… But on the other hand, for the first time in all these years the idea of “the beast” that can “attack” at any time (even though I only have it at night) is really frightening for me. I’m anxious all the time and I’m unsure of how my life / relationship / career is going to evolve. Even though I’m in the “best” cluster of my life (painwise/number of attacks), it feels like it ’s my worst ever in terms of anxiety. Maybe important to mention: I had a burn out last year (working again since seven months) and in general I’m kind of an anxious type. I’m seeing a (behaviorist) therapist for this, but it takes time to work on this. Because of the atypical episode and the anxiety surrounding it, I went to see a neurologist again. My previous neurologist is an hour and a half drive - that’s pretty far in Belgium :-) - so I went to see an other neurologist which I could find on the internet who is also specialised in cluster headaches. I had a nice meeting with him, and we talked about the possible (but not proven) connection in the brain between cluster headache, anxiety and depression. He wanted to interrupt both the clusters and the anxiety so he wrote some prescriptions for preventive medication. At first I felt some relief because of somebody listening to me, and wanting to help. But in retrospect I don’t like at all what he prescribed: Lithium 250 mg Deanxit (Flupentixol) (anti anxiety) Also he said something about “having to prevent the clusters well to prevent them of getting chronic” (??? evidence ???). In my opinion Lithium is overkill (for me) and too risky on the long term for the few attacks I’m having. And the anxiety is something I would like to learn to live with instead of sedating it. Instead of taking such destructive drugs I would rather sit out this episode without taking any (except the zolmitriptan of course). And then prepare well for the next episode. But I feel bad and guilty for having to/wanting to ignore the advice of somebody who is specialized in treating clusters. All comments or suggestions, similar experiences are welcome! (On the atypical cluster - the anxiety - the prescription drugs - ignoring a doctors advice...)