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Cluster Headache Help and Support >> Getting to Know Ya >> First Post From New Member: Hello Everyone! http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1565304314 Message started by Jason Z on Aug 8th, 2019 at 6:45pm |
Title: First Post From New Member: Hello Everyone! Post by Jason Z on Aug 8th, 2019 at 6:45pm
When I started getting these attacks as a teenager (35 years ago) I was misdiagnosed with migraine, in part because it runs in my family. I used to bash my head against the wall when I got attacks and wish I could cut my eye out of its socket. I even asked my Dr. to amputate my eye, which she refused to do, saying it wouldn't help. (Still, if that did the trick I would do it without hesitation.) Finally diagnosed with Cluster Headaches about 6 years ago, for the first time in my life I've found some relief. Oxygen worked for me the first time I tried it and I was so overwhelmed that I wept. My attacks are triggered by relaxation, sleep or even the tiniest trace of alcohol. I could be wrong, but I've noticed a correlation just lately with sparkling, intense sunlight. Not sure about this because I've only noticed it three times in the last few weeks and never before in my life. They come like clockwork, waking me up a few hours after I've fallen asleep. So, I take Verapamil twice a day and a combination of oxygen and Sumatriptan at onset. I'm entering my third month of this cluster cycle and haven't slept through the night in over 10 weeks. I dread going to sleep because I know the next thing I feel will be excruciating pain. My husband of 25 years is incredibly supportive but feels totally helpless. Presently the oxygen will stave off a headache for a few hours, but it always comes back. The Sumatriptan seems to work very well, but the pills take 30 minutes to kick in. The injectable Sumatriptan works almost instantly, but I can only get 8 doses in a 23 day period. So I'm saving those for when I'll be away from my oxygen tank for a 5 day trip next week. I've had some success with acupuncture.
I'm so grateful to find this community and see some similar stories about how truly excruciating these headaches are. There is no pain that I've ever felt IN MY LIFE that comes anywhere near this level of torture. Even calling it a "headache" just doesn't do it justice. It is absolute agony. I was and am, totally serious about amputating my eye if that would end these attacks. No question. Super glad to hear that there are some more promising therapies on the horizon. Waiting to try a new, once-a-month injectable that my Dr. suggested. I hope it helps because I am worn-out, depressed and short-tempered. My longest cycle was 8 months with, maybe one or two nights in the entire period where I didn't get an attack. The longest I've gone without entering a headache cycle is a little over 10 years. So, hello and thank you to all of you in this community. Thank you all for being here. |
Title: Re: First Post From New Member: Hello Everyone! Post by AussieBrian on Aug 8th, 2019 at 10:29pm
G'day Jason, welcome, and getting that diagnosis is so important because at least now you know the beast you're dealing with and can finally fight back.
Shame about the Sumatripan shortage but as your headaches are so close to clockwork you could perhaps take a pill an hour or so before a big one is due to give it time to start working within your system. There's also a button on the left side of your screen marked "Immitrex Tip" which might see you get more than one shot out each of your eight injectibles. Also look around the boards here in regard to the vitamin D3 regimen which is offering great success for many people at just pennies a day. You say you have a great supporter and I ask you give him our sincere thanks because people like that are hard find to find and we rate them right alongside gold and diamonds. CH is an absolute menace, no doubt about that, but the fight is winnable. All the best from down under, Brian. |
Title: Re: First Post From New Member: Hello Everyone! Post by Jason Z on Aug 9th, 2019 at 12:28pm
Thanks Brian.
It means a great deal to me to hear back from you. Just knowing that there are other people who understand... I'll look into the D3. Thanks for the recommendation. |
Title: Re: First Post From New Member: Hello Everyone! Post by Jason Z on Aug 9th, 2019 at 5:06pm
Thanks, I have to admit that I really want to try the D3, but I am so tired and fuzzy headed-that I feel overwhelmed by all the different pills and doses. I've read the D3 link a couple of times and I worry about starting without getting my bloodwork done first, whether to take it with meals, hours apart from my verapamil... 10 weeks without sleeping through the night has shredded my ability to think clearly. Any advice for a simple way to begin?
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Title: Re: First Post From New Member: Hello Everyone! Post by Jason Z on Aug 12th, 2019 at 11:46am
Thank you very much for your thoughtful and detailed reply.
It means a great deal to me that you took the time to reach out. Thank you. One of the things about my experience with acupuncture is that I have such a strong desire to find ANY sort of pattern that I'm sure I assign meaning to conditions and events that may correlate without cause. I had the intuition that the acupuncture helped to reset my circadian rhythms and helped break the cluster I was in at the time, but I haven't had the same luck with this cluster... I'm on a multivitamin that includes 175% RDA D3, along with magnesium and verapamil and my cluster seems to be tapering off. No attack last night, mild attack the night before, broken with Oxygen and a shallow attack the night before that. 90 minute onset, which is very unusual, and an hour long headache at a (comparatively) manageable 6-7 Kipple. I was "only" rocking back and forth and moaning. So, I'll keep taking that Multi. In any case, I'm clinging to the hope that this cluster is tapering off. The shadow which is always there during my clusters seems to have vanished. I'm only getting periodic echos of the "electric tickle" that is my shadow. Until I got to this forum I knew my experience was excruciating, but without the Kipple scale and others who share this torture, I thought I was being overly sensitive or, just not strong enough to deal with "a headache." It's shocking to find validation for the scale of this challenge. Thanks to you again and everyone here. |
Title: Re: First Post From New Member: Hello Everyone! Post by Peter510 on Aug 12th, 2019 at 3:20pm
Jason,
What is the dosage of D3 in that multivitamin you mention. It should be stated in IU (International units)? Peter. |
Title: Re: First Post From New Member: Hello Everyone! Post by Jason Z on Aug 12th, 2019 at 3:54pm
Dear Peter,
It's listed as 700 IU. Thanks, Jason |
Title: Re: First Post From New Member: Hello Everyone! Post by Peter510 on Aug 12th, 2019 at 5:59pm
Jason,
You should really follow the 4 week loading dose set out in Batch’s paper and then have your bloods done to establish your 25(OH) level. 700iu daily is not likely to build your D3 levels high enough to chase the Beast away. Peter. |
Title: Re: First Post From New Member: Hello Everyone! Post by Jason Z on Aug 19th, 2019 at 8:16pm
Thank you Peter,
I will do so. Just got back from being away for 4 days, three of which were CH free! This is very unusual for me and almost always means that my cluster is breaking up. I will start the regimen and get my bloodwork done, now that I'm able to think clearly again. It's amazing what sleeping through the night does for making me feel human again. Wishing you the best, Jason |
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