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Hi everyone, Wanted to share my experiences as haven't seen this noted on any of the sites I've searched. to be brief... 1. Lithium disrupted my vitamin D. In addition to feeling awful from a low dose, the relief I found with Vit D was stopped while taking it and resumed when I stopped. Worth considering if you are taking Vit D without success. 2. Vit D levels are very high now, 343 nmol, & I continue to take 35,000 IU a day, but I'm reluctant to reduce dosage as worried attacks will return. Has anyone else had to maintain very high D levels to stay PF? 3. A very cheeky Christmas question.... I'd love a couple of drinks this Christmas, but alcohol has triggered me in the past. Does the Vit D disarm the triggers, or is that wishful thinking on my part? About me: I'm ECH, started about 14, I'm now 37. Luckily usually only get it every 2-3 years. Oxygen aborts cleanly but seems to give me rebounds - a huge debt of gratitude goes out to Ben Khan for that one. This Cluster experience: About a month ago it started up. I had tried the D3 regimen before but this time dosed up high 21,000 IU a day, moving to 35,000 IU, which amazingly worked - Batch is my hero! But I had started taking Lithium at the same time, which apart from making me feel all kinds of awful (nausea, loss of appetite, dizzinness/light headed, and extreme light sensitivity to *both* eyes) my attacks became more frequent and through the night when my pattern is for early morning attacks. Despite being a low /starter dose for lithium, I felt so awful I stopped taking it, at the time not knowing what I was reacting to. Within a day the attacks started to die down, and then back to attack-free days (small shadows excepted). When my D levels were tested, I came back at 260 nmol. I dropped down to 21,000 IU a day, but just 3 days of that and I could feel the shadows coming for me, so went back to 35,000 IU - sure enough had an attack a few hours later that night. I have stayed on this dose assuming the test was wrong, and went for another test 4 days ago - this came back at 343nmol. I'm reluctant to reduce again for obvious reasons but I have now been dosing pretty high for a month. Any advice or similar experiences? Thanks Leo

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...)

I've been a chronic CH sufferer for almost 4 years; 3 - 10 a day, every day during that period, though I did have been able to get kicked into one or two headache-free days when dosing with steroids. CHs have destroyed my career, my finances, and most relationships. Anyway, we all know how dear the cost of chronic CHs are. FINALLY, after exhausting pretty much all avenues and every drug (I've been entirely intractable and resistant to every treatment), a neurologist put me on low-dose Lithium. Within 24 hours, they were entirely shut off! It's only been a few days, but this is the first time I have been able to leave the house without feeling like the 'dragon' in my head was stirring and ready to wreak painful havoc. Honestly, I can feel that something has changed, almost like a switch has been turned off. Who knows if this will last, but for now, it's VERY promising. The dose is currently 150mg, twice a day. I don't feel side effects at all, other than being a little thirstier, but nothing else, yet. If this continues to work, I'll ask if we can start titrating down, a little at a time, until I can take the very minimal dose that works. At these dosages, though, sides effects are unlikely and if they occur, they should be mild and far more manageable than numerous CHs a day. All I'm saying is that, if you haven't tried Lithium...TRY IT! This is from a man who has tried EVERYTHING. Peace!