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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?
Hi all, episodic cluster sufferer here. I have had cluster headaches on the left-side of my head for about 9 years now. I have tried everything from triptan medication to prescription medical oxygen. The only thing that has really worked to abort the attacks is the oxygen, and that is only convenient when it is available and works completely. Recently, I have been doing a bit of research and experimentation regarding the trigeminal nerve and intranasal application of capsaicin (hot pepper extract). I have had great success with this, and my cluster headaches have been less frequent, as well as the pain of attacks has been reduced greatly. For a high level overview of why/how this works, please reference this video. Also, here and here are published studies. Method: The method that I use to accomplish this is relatively simple - Instead of using pure capsaicin extract, I use really hot peppers and a Q-tip. Lately, I have been using bird's eye chilies, but really any hot pepper hotter than a jalapeno should work. I take a sharp knife and slice the pepper down the middle. From there, I spread it open and roll the Q-tip around inside of the pepper, while pinching the pepper around the Q-tip to get the most liquid that I can. After that (make sure there is no debris on the Q-tip, first), I place the Q-tip directly inside of my nostril on the side that I experience headaches on (for me, it is my left side) and rub it around directly on the mucous membrane inside my nostril. Immediately, you can feel the burn. Here's the thing - the first time I did this, it hurt like holy heck. The second time, it hurt, but not as bad as the first time - this pain continued to subside with daily application, and I currently barely feel anything when it is applied to the inside of my nostril. It is best to place the Q-tip directly inside your nose and apply, then when your nose starts running, inhale through your nose to get it a bit further up there. If you are doing it correctly, your eye will automatically begin to water (just like during a cluster) and you possibly may begin sneezing. I have done this twice a day for the past month, and my headaches have decreased greatly in both pain and frequency. I believe there is something to it, and suggest that others give it a try. I should definitely be amid a cluster period right now, but have been for the most part headache free. I understand that it sounds a bit bizarre, but I was willing to try anything to get my headaches under control. This seems to be working for me, and I couldn't be happier. If you have any questions, feel free to ask. Thanks!
paulamac posted a topic in General BoardHello fellow Clusterheads! This community has been super helpful in helping me to discover ways to better manage my chronic cluster headaches. Thank you! I've been in a great place with my cluster headaches now for a little over a month- which is huge for me. But, I am noticing I am starting to get more frequent migraines. I do have both, but I really haven't had migraines in years. Has anyone else noticed that a period of decreased/diminished clusters can increase migraine?
Hey all. I have been an episodic CH for 15 years. I am 34 years old As an integrative/alternative doctor, I have tried almost everything to treat this. Yes including all the psychedelics The past year I have found an amazing combo that hasn't cured me but certainly made it possible to have a wonderful normal life between attacks. I have learned what foods my gut is intolerant to and stay away 90% of the time (gluten, diary, almonds, bananas, caffeine etc), I have acupuncture from an excellent acupuncturist at least once a week, I live a clean life with as few toxins as possible (free range foods, no smoking drinking etc) and most notedly have intravenous magnesium every second day or so during a cycle. I do still use a third imitrex/imigran to treat a headache What's different on this is that between attacks I feel completely normal. I can work, sit in the sun, run around with my kids, not feel low etc and the attacks are much milder, never more than 1 a day, never after the first hour of waking and no longer everyday for a month. Have about 2 a week or less. Thought I had beat it My problem ... And question is thus: I started with first headache of cycle in June. Then nothing for a month. Another 2 in July, then about 5 in August and now 8 or so in September. Still following the changes I noted above. I know I'm a special case but has anyone experienced anything like this?! I have never lasted more than 2 months but then everyday for 2 or more attacks a day. I'm terrified I've gone chronic but trying to hope for the best. Has anyone gone from episodic to chronic .... What was it like? Searching for light in this madness Xx