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Just diagnosed


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Hello, I was recently diagnosed with CH, this cycle has lasted 3 months. Neurologist put me on Verapimil which seems to be helping. Only been taking it for 2 days so I hope the results become more noticeable but any improvement is a God sent. My last cycle was treated with Xanax of all things, but it worked. This time around was a bust, probably the only reason I did seek specialized help. But after 3 months I just could not take it anymore. The pain, along with sleep disruption still has me in a fog. It is shocking how distinct my symptoms are, how accurately I described them, and how it never got properly diagnosed. I told the doctor I had at time, I was getting headaches every night, behind my right eye which was blood shot for some reason, waking me up just after falling asleep, and it was like no other headache I ever had, having suffered migraines as a kid I knew what they felt like, and they were nothing compared to these, ibuprofen was not doing a thing, even if I took it all day, and the fact that I always rocked myself during this headache, occasionally pacing, but never sitting still, even a mild CH headache, I can not sit still, I can't be still, can not be around people, never hit my head on the wall, but punched myself in the head certainly. I don't scream, but I groan, massage the lower part of my face. I just feel  that it was not taken seriously, by anyone. This cycle was different, different doctor and she got blood work done, has been years since I had blood drawn, plus my medical coverage has been spotty, but had blood drawn about 2 weeks into this cycle, she called me at home and asked how I was feeling, told her I felt good that day, then she told me I was diabetic, bloodsugar was 389, I asked if that was high? Lol, looking back it's funny. But because of that diagnoses my headache symptoms were put aside as a possible result of high blood pressure (180/124) the week prior to my bloodwork and the diabetes. Finally on my last visit about 2 weeks ago I told her I had it with these headaches, couldn't even have a beer anymore cause I get a headache when I drink, and I love beer, and it's yard mowin time, the 2 were created to go together in my mind I told her. So she told me I needed to see a neurologist because that was not her field. Which brings me to right now. So I have posted all my medical mishaps on social media, just to try and get it out there, and I think people find my diabetes to be worse than my headaches. Ignorance is bliss, 

Thank you for putting all this information out there, it has helped a great deal. It's also nice to know I am not alone in dealing with this.

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Glad you got diagnosed, t'.  It's highly unlikely that verapamil has worked in two days, particularly at the low dose with which I assume you started.  Maybe your cycle's ending?  Pretty much everything non-arcane that I know about non-"busting" ways of dealing with CH is in this file, as well as some basic busting info:  https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ 

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10 hours ago, tmeseck77 said:

Thank you CHfafher, maybe it is wishful thinking or I am at the end of this cycle. 3 months is about as long as it last with last cycle, time will tell. 

Hey T,

Three months is the longest cycle I ever had as an episodic. Hang in there! Welcome to the club ;)

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Welcome! I'm new here too, although I've had clusters for 9 years now. This forum and the people on it are beyond amazing. 


It's almost funny how close your history is to mine. From the times, and severity to the amount of time it took to actually get diagnosed. I really felt as if I was reading my own story lol! 


Did they prescribe you with anything to abort the headaches when you have them? Sure the main goal is to avoid getting them all together, but the sad fact with clusters is that they're very sneaky, and you'll probably end up getting them here and there despite preventative measures. Oxygen has been my go to. Before the oxygen, I had nights that were beyond miserable. My bedroom wall will agree. (Two holes, one from a fist, and one from my noggin...) It's crazy how these headaches literally make you lose control of yourself, they're a wicked monster, but they can be controlled. 


I would for sure scan this whole site, because there are so many stories and the advice is amazing. These headaches are different for everyone, so what works for someone else may not do anything for you or I.  


Best wishes! Being diagnosed and educating myself here were the two biggest steps towards controlling these monsters!



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