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This is my first time with CH diagnosis and I have been in cycle since July 4 (I may have carried this for years, thinking it was sinus headache - but this year has been almost unbearable). Can you experienced folks help me understand what you experience when you come to the end of a cycle? Does the cycle end come suddenly? Are there subtle changes? Can you normally sense when things are winding down? By the way, THANK YOU for all the great information and experience. I am finding some pain relief through this forum, as well as emotional strength through our shared pain!
A Way Out posted a topic in General BoardHi All, In the past few weeks, I've been doing a lot of renovations, and the fall is here, and I've started getting cluster headaches again. But this time I only had one full-on blown headache, and it was a 1 on the 1-10 scale of cluster headaches. I've had shadows 10 or 15 times, but I wouldn't call them full blown headaches. The frequency and intensity of the shadows has been decreasing, and they're almost gone after 2 weeks. So I'd like to share how I've come to basically eliminate cluster headaches from my life. I'm quite confident that knots in the neck are the primary cause of the cluster headache. I use a trigger point cane massager to relieve the knots, and this has prevented cluster headache for a couple years. I also practice an active form of relaxing the muscles in the next and back, and work to preserve go is standing and sitting posture. If you're just starting a cycle, the trigger-point massage can provoke shadow-type cluster headaches, but rarely full-blown. It is not an effective treatment IN THE MIDST of a cluster headache, but it doesn't do any harm and the pain couldn't be much worse, anyway. I discovered this relationship after 20 years of cluster headaches, with a 2 to 3 month cycle coming every 2 or 3 years. Many people experience knots in the neck during a cluster cycle, but I'm quite confident that everyone experiencing cluster headaches has a knot in their neck, and that the know precedes the headaches. Here's a study backing up my claim, but I encourage everyone here to get a trigger point massage stick, practice relaxation and self-care, and find out if I'm right for themselves. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2631448/
Hey guys, this is my first post here and I just wanted to say hello. I started a new cycle on September 4th. This is my fourth time through it. First one started in 2009 When I was 21. I Was diagnosed with CH maybe 4 years ago by my GP who recognized it right away. They come every other day, always at night although each cycle is a little different. Earliest was on Thursday it came at 7 pm. Those are not as bad as the sleeping ones. Last night was the worst. It started around 3, but I feel back sleep, woke up at 5:30 and it felt like my brain was bleeding. They have always been about 45 minutes to an hour, but the last few were closer to two hours and they are getting more intense. Shadow lasts most of the next day, and then the day after a have a lot of tingling during the day before the attack comes on in the evening. It was cool to see a community of people that deal with the same thing that I do. Most people I know really don't get it at all. It's impossible to explain, people get this weird look on their face when u try to talk to them about it. I think I'm one of the lucky ones though. Sounds like a lot of you have it worse than me. I haven't seen my doctor yet, but in the past I have taken verapamil and that worked pretty well. I Took imitrex once. Never again, it was awful. I've never seen a neurologist and haven't had any brain scans done. I have also been diagnosed with severe depression, generalized anxiety, social anxiety disorder, and ADHD, as well as potential Central Auditory Processing Disorder. I took some tests a while back which showed severely impaired short term memory. All that it is to say, does anyone else have similar things a long with CH, and should a see a neurologist or just continue with my GP? I gave up on therapy because they were too patronizing. Sorry that was kind of long winded. Come say hello, and thanks for listening.
Greetings fellow clusterheads. Very grateful for websites and forums like these. Around the age of 12 I started getting the most brutal headaches I had ever endured. At the time we had no idea what they were. As most of you went through as well, I had all the tests, scans, sinus meds, the works. Eventually, on my own after the age of 18, I figured out what they were, and discovered that there was no cure lol. What a kick in the balls that was. Anyway, I'm now 35, in the middle of a cycle, after going 4 years since my last one. The older I get and the more I progress career-wise, the more pissed off I get at these headaches. I'm trying more things than I ever have before, and more consistently, in an effort to find something that works. In past cycles I would be so damn depressed that I would just wait until the next headache, at which time I would alternate between holding a scalding hot heating pad to my head, and taking hot showers for 3-4 hours until the pain began to subside. This time around, as soon as I got the first one, I went to see my doc, and informed all of my different clients (self-employed) that if I was to get a headache, I will be unable to function and work. For the first time ever I found something that worked as an abortive (so far, knock on wood). Imitrex injections. In the past I had taken tablets, but never the injections. A week and a half ago my doc put me on Prednisone hoping to knock the cycle out. 80mg the first day, then 60 for two days, then 40, 20, and 10. No go. As soon as I got to the last day of 10mg, I got a beast of a headache. As of yesterday, I'm now on Verapamil, started with 80mg yesterday, and 160mg today and for the next few days. Plus taking Magnesium supplements, still small though, only 250mg today. The new meds have fucked with my usual cycle, so I'm curious what everyone's thoughts are... In past cycles, I would get one incredibly bad headache in the morning every couple days. It would last 3-4 hours, then I would be sore the rest of the day, and then nothing the next day. The last few days have been as follows... Saturday early morning was the brutal headache following the Prednisone. I was headache free then until Monday early morning when I got one and used the imitrex injection for the first time. About 8 hours later when I woke up I had a milder version of one that I knocked out with a heating pad in a couple hours. That day (yesterday) I began the Verapamil. Today early morning I got another one, thought it seemed slightly weaker, and used the imitrex again to knock it out. Now this evening, earlier than usual, around 8, I got one that seemed even weaker than the one I got early this morning. It was still bad, like someone burrowing out my brain with a spoon, but not nearly as bad as the really bad ones. I used a heating pad, hot showers, and aspirin with codeine, and knocked it out in a couple hours. Today was the day I took 160mg of Varap. My question is... could the cycle be coming to an end already due to the Varap.? Sorry to sound anxious, these things are just a fucking living hell. I'm a musician, so I've basically had to hire subs to be 'on call' in case I get a headache. I anticipate another one a couple hours after falling asleep tonight, and then I will see how tomorrow plays out. I will be on 160mg of Varap. for the next few days. Would you advise me to jump up the dosage? Or see if this one works? And again to my question, can the weakening of headaches be a signal of the end of a cycle? In past cycles I do recall that was how it occurred, but it has varied every time, and I think honestly I try to block out the memories of these fucking things. Thanx for listening to my story! And my heart goes out to all of you sufferers.