BarcodeJ
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I Love CH.com!
Posts: 6
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First of All, I want to thank the people that sent me info and support here and in private. Any information I can get that helps with coping or treating these is very much appreciated.
Secondly, I apologize, for the rather negative tone of my first post. Maybe not the best introduction. But as I said I was writing it in the middle of the night after an attack and wasn't really at my most tactful. I also went back and edited a bit to make it a little less offensive to the eyes. I typed that on my phone so formatting wasn't really a primary concern at the time.
Next, an update. After Friday I was so burned out on headaches and side effects I slept til about 2 in the afternoon. Around 9 I started feeling...tension in the base of the skull on that side and occasionally just these hints of the feeling of an attack. I guess you could call it shadows. I'm not sure. I decided to preemptively take the sumitriptan tablet to try to get a night of peace. Midnight came and went and I had no headache. So Sunday I waited til I started feeling these shadow and did this again and again I managed to spend the night free of the beast. Monday I tried calling the doctor and nobody answered or it kept going to busy signals the 20 or so times I tried calling. So I booked time off work for Tuesday morning and decided to get to my doctor's office an hour before they opened to ensure I would be one of the two walk-ins they would see today. But I decided to take a risk, no pill Monday night. If the beast came I would record it and the autonomic effects as further evidence of my self-diagnosis. If he didn't, even better. To my surprise, no headache Monday night. Had a few light shadow feelings but nothing as intense as what triggered me to take the Sumitriptan the two days before. As part of my preparation, I printed off an article from a peer reviewed European Journal that was a literature review on various studies published on CH. I went through and highlighted all the relevant information on diagnosis, general need to know, and treatment recommendations.
In my pain free evening I decided to start my headache journal. (I know, you are supposed to journal days when you have headaches, not really wait until you don't have a headache to journal, meh.) I wrote everything I could remember, about when they started, different times I had attacks, where I was and when it was. Unfortunately, that's not a lot. I have always had a bad memory when it comes to stuff that happened day to day. Facts and book info I retain well. But What I did last Friday I normally couldn't tell you (this time I can because it's posted up there^^^) But doing this, I did think to go search the old junk drawers and then look up my refill history from the pharmacy. My pharmacy history only goes back to 2016 but it Shows I filled my sumitriptan on 9/06/2016 and 2/23/17. My first Maxalt script bottle that I have is from 9/2/12. and Current Cluster being about a month off the February refill from last year. (I think I may have gone back and refilled because I was running low after the fact). Seems like a twice a year thing for me more or less.
Anyway, A bunch of potentially useless information up there I guess. The point is, today I took all that info to the doctor and with the article, my description of the symptoms, a chart review, and the medication refill history, along with the fact my previous doctor already did a CT scan with contrast when this started, he agreed completely that I have CH. He is just a family practice doctor and locally can't prescribe o2, or sumatriptan injections, or enough prednisone to be effective. (I get the first two, but really I'm sure most of you all know the recommended levels. He gave 20 mg x5 days. That level of prednisone isn't really effective against a common respiratory infection let alone a CH.) But he hooked it up with 240 mg Verapamil, and got me the Sumatriptan inhalers instead of the tablets so I guess that's an improvement. They are giving me a referral to a Neurologist, but no appointment set yet.
Currently, I have what I would describe as more than a shadow, but not an attack. I don't remember having this before but maybe wasn't paying attention? It's a headache for sure. I haven't taken anything as far as triptans or other pain relievers today. I think I would normally (outside of a cluster) rate the pain as severe, but compared to an attack it feels dull. But it is on that same side. There is no pain or abnormal sensation on the right side of my head or face. It started early. Around 6pm. It's now almost 10pm. I'm wondering if maybe the low dose of steroids and early treatment with verapamil(I have been taking some extremely out of date verapamil at 80mg a day before starting at the 240mg dosage today. It may have been 4 years old but it was potent enough to kill my appetite so it's doing something) is maybe delaying an attack from kicking in full force but not preventing it all-together so it is just hanging there in an in-between limbo state. Is that something any of you have ever experienced?
I'm sure that's more than enough information for one post. Sorry for rambling. Crossing my fingers for tonight.
BarcodeJ
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