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Hi everyone, I suffer from episodic CH. Over the years I've had a total of two occipital nerve blocks administered by my neurologist, neither included steroids. I guess it was just lidocaine that was injected as my nuero said she doesn't like doing the nerve blocks with steroids. This probably explains why neither procedure provided me more than about 12-24 hour relief. From what I've read online if the nerve block includes the steroids it can offer several days or even weeks of relief. In your experience, have you had an occipital nerve block with steroids? Did it help you? Who administered it, your neurologist or a pain management doctor? Any intel is appreciated, thanks!

I have a simple question for those that too suffer from episodic cluster headaches. Do you ever get a random shadow outside of, or between, cycles. I am talking like several weeks or months after a cycle has ended. I find that this happens rarely to me and am wondering if anyone else experiences the same phenomenon. It is strange and anxiety inducing for sure.

Hello there, I have been suffering with cluster headaches since I was about 15, and am 29 now. My cycles have always occurred every 2-3 years and have lasted anywhere between a month and 2 months. This current cycle I am in is going on 3 months now and I just wanted to hear anyone else’s experience, do your cycles vary in length? And have you had cycles where you couldn’t pinpoint when the attacks would happen? I have almost always been able to pinpoint my attacks down to the minute, but these feel all over the place. Some days I get one a day at 3pm, other days it’s 11:30, 1:30, 7 etc. just looking for some solidarity I guess. I don’t know anyone personally who has these so it’s been lonely. thanks! BB

I am curious as anyone experiences shadows on the opposite side of their head from the side they get attacks on? I seem to experience shadows on the left side of my head and behind my eye during my cycle more than on the right side in which my attacks occur. Is this normal or something others experience?

Hi my name is Brian and I am new here and have a quick question! I am 28 I have been having cluster headaches since my early 20s and as you all know the pain is unreal. My question though is about the nature of my cycles as I seem to have 2-4 cycles a year lasting only from a single day or two up to 10 days (longest it’s ever been). Is this abnormal as everything I read about cluster headaches suggests cycles are much longer than just a few days, I have all the normal symptoms of the headaches, the triggers associated with the headaches as well but my cycles don’t seem to fall at the exact same time each year maybe once a season or so. If anyone else could shed some light on whether very short cycles are common? also my average cycle is about 5-7 days

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