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Cluster Headache Help and Support >> Cluster Headache Specific >> Looking for advice http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1328625913 Message started by er on Feb 7th, 2012 at 9:45am |
Title: Looking for advice Post by er on Feb 7th, 2012 at 9:45am
I don't know that I have a specific question. I would just like to (as briefly as possible) share my current scenario and ask if anyone has any advice.
In November, I had my first ever cycle, which lasted approximately 3 months before complete relief. The cycle included weeks of nightly wake-up calls, many of which were of the most extreme intensity (don't think I need to explain to this group what that means). The cycle finally broke mid-January. I am currently taking 240 mg of Verapamil a day and had enjoyed approximately 3 weeks of CH-free days and nights. However, for the past 5 days in a row, I have had CH of moderate severity (a real relative term after suffering the most severe, but still debilitating), that have all hit me within 2-3 hours of waking up. As I write this, I feel I am currently starting my second CH of the day a mere 2 hours after the last one subsided and am about to pound a Red Bull. I do not know if this means my cycle never ended, I'm starting a new cycle, this is just a hiccup, or what. Does anybody have any thoughts or information that might help me before I start to panic that it's returning to full strength? Thank you!!! |
Title: Re: Looking for advice Post by Guiseppi on Feb 7th, 2012 at 10:17am
What Bob said! :-/
Maybe it's a new cycle, maybe the other cycle never really ended and the low dose of verapamil was keeping it in check. The numerous "maybe's" can drive you nuts if you let them. I've gone thru periods of predictable 3 month cycles, 2 times a year for many years, only to hit an almost 2 year remission followed by an 8 month killer cycle. We say it a lot on the board but it's something you must learn to embrace: Enjoy the pain free times, but ALWAYS be ready to do battle with the beast. So if it does return to full force, just be ready to slay the beast. Whether it's with oxygen, the "Batch regimen", busting, whatever your prefernce, hit him with both barrels. Joe |
Title: Re: Looking for advice Post by er on Feb 7th, 2012 at 1:47pm
Ok, I updated my profile. I live in Miami, Florida. I am currently seeing the same neurologist that previously treated me for migraines for the past 10 years. I like the familiarity and the fact that he knows my history. He was the one who recognized the change in my symptoms and diagnosed me with CH. I find him to be a good and open-minded doctor, though I would not necessarily classify him as a CH specialist. He is a life-long migraine sufferer, and he does not shy away from trying anything and everything because he feels he understands pain and the fact that everyone responds differently to different treatments.
I appreciate all of the information you provided, and it seems to me the answer is that everyone is different and that I should stay the course until it seems the course is not working, keep in contact with my neuro, and basically come to terms with the fact that this is a part of my life now and I have to be patient while I learn the best treatment for me. Thanks again. I have a follow-up in a few days with my neuro anyway, so we'll see how it goes. Perhaps an upping of my Verapamil dosage is in order. |
Title: Re: Looking for advice Post by Mike Bernardo on Feb 7th, 2012 at 2:17pm
I'm noticing that being on the medicine does not mean the cycle ends, it just keeps the pain at bay. You need to be on the medicine during the cycle to keep the pain at bay. I often can tell the pain is there, it's just dampened. When the intensity is way up, it "breaks through" even on the highest levels of relief (O2, Red Bull, Verapamil, Topamax, Clonazapam, Aspirin, Sumavel, and Cambia). However, at the lowest levels, taking nothing, the pain is manageable. Therefore, the cycle may never have ended, the pain may just be ebbing and flowing. Seems many of us are experiencing a rather long cycle right now. Could be coincidence, could be weather patters, could be the moon cycle. Who knows. All I know is that it sucks. I'm battling a double cycle from October to now, no end in sight, biggest dose of meds (see above) that I've ever taken still with the worst pain I've ever experienced. I don't know how you all have done this for so many years. I'm only suffering over the last few years with this. My hat is off to you.
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