Search the Community

Does anyone have a strong support group for Cluster Headaches? I've been trying to see if people are willing to start some type of support group. Maybe via zoom, or Skype call. I know that people that suffer from cluster headaches fall into isolation and it's hard to find other C/H patients. I would like to try and start a weekly zoom call if enough people are willing and discuss things like. Treatments Dealing with pain Depression Anxiety Loss of job Disability Dealing with family and friends Anything related to Cluster Headaches Does anyone know of a call existing already?

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...)