Tuesday, September 9, 2014

Cluster Headaches...."The Beast"

Well, it has come to my attention that other CH sufferers refer to their headache as "The Beast." That describes them perfectly. I found a website yesterday for folks that have these debilitating headaches. Why haven't I found this before???? I have been researching headaches for years trying to find help with mine. I spent about an hour reading and taking mental notes on a lot of information. I was on day 6 of my "Beast." As I read through the folders, it became apparant to me, that most of us have low vitamin and mineral levels. With having UCTD, I've known this for years. My vitamin d is always low. Along with magnesium and vit b. For a long time I took supplements to make up for what I couldn't get with foods. What I didn't know, was that I probably wasn't taking enough. With that, I only drink lemon water....all day, every day. I do this to help keep my liver clean and to flush out toxins, which my body hoardes. So, I was also washing out important vitamins and minerals too. I then went over all my files and papers on my bloodwork that I do twice a year. My vitamin d levels are low, but not low enough for anyone to pay attention to. Only, with having UCTD, those levels won't work for me. My UCTD antibodies destroy what is there. Thinking that it couldn't hurt, I took 8000 is of vit d3 and within 45 minutes my 6 day "Beast" was gone. Is this a fluke? Am I excited...absolutely not. I've had other things work for a month or two then come back. Most "Beast" sufferers take 10,000-20,000 iu of d3 everyday. During the "Beast" cycle, they bump it up to 40,000 iu. Quite a few sufferers have noticed improvement and some have even stopped it in its track. I'm fairly certain that I brought on last weeks "Beast" with working out in the heat for 2 days. I was drinking water like mad and sweating all my nutrients and vitamins out. Within 24 hours of being out in that nasty heat, the headache hit me hard. I barely made it home from work. Usually I get a 6-10 hour notice of one on the way. This time, only 30 minutes.
Please know that I write these blogs in hopes of finding others out there like me. Some may be suffereing from being misdiagnosed, like I was for 7 1/2 years. I am not looking for sympathy. Just knowledge. Also know that when I am "busy" it is because I know this "Beast" will return within a few weeks. I have to get things done. I lose 6-8 days at a time when they hit. That may not seem like much, but in a year, that is 48-60 lost days. With these, combined with UCTD, I am an insomniac during the cycle. That is from the pain. I sleep, if you can call it that, sitting up. I can feel the veins in the back of my head and neck pulsating. I put ice on my head to the point of my skin getting burned. My others senses are highly elevated. Whispering can feel like a bomb in my head. Food smells and tastes awful. I fidgit trying to find a way to rest. I will sometimes sleep on the cold floor to relieve some of the pressure. No lights. I take shots and tablets to help. Sometimes they work for 6-10 hours, sometimes 2-3 hours. I am limited to the amount I can take of each. Most CH start in the middle of the night and I hate getting up to go give myself a shot. My leg is one big bruise from the shots this past week. I can't even think of going back to work or school with those kinds of numbers. I am thankful for the folks that I do work for and their understanding when I have to call off or rearrange my week.
I am blessed with an amazing family and group of friends that let me vent during these cycles. I try not to vent very often...there are so many people out there worse off than me. I have several friends dealing with the ravages of cancer. I can deal with this. As long as I have these, I will continue to educate myself and try to find the treatment that works for me. If I can help 1 person with CH and get them to the right website or right doctor, then it is worth blogging about.
Here's a link to the CH website. www.clusterheadaches.com. So much information out there.

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