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Cluster Headache Help and Support >> Cluster Headache Specific >> 1 year pain free - my CH's caused by dust allergy http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1521562089 Message started by anubis44 on Mar 20th, 2018 at 12:08pm |
Title: Re: 1 year pain free - my CH's caused by dust allergy Post by Callico on Mar 27th, 2018 at 2:31pm
I'm sincerely glad you are PF! I'm of a mind you were misdiagnosed with a CH-like illness. So glad you found the answer, and I hope your post will be helpful to someone else in your shoes.
jlc |
Title: Re: 1 year pain free - my CH's caused by dust allergy Post by shooky on Mar 31st, 2018 at 6:01pm
CHers sometimes go into remission for a year or even several years. Also, CH triggers vary between sufferers. So, although it is possible that eliminating your allergies improved your CH, it is far from certain that you find the cure for all of us, or even yourself.
Note that CH was once called "Histamine headache", because it was found that sufferers produce a lot of histamine during bouts. Only trying to treat CH with anti-histamines failed, because histamine is only one inflammatory agent that is involved in CH, and is clearly not the root of the disorder. So your case is Having said that - Batch had suggested here that an allergic reaction may, in certain cases, exhaust D3 reserves and make us more sensitive. Maybe in your case an acute allergic reaction indeed was THE major trigger so treating it prevents your CH attacks as well. |
Title: Re: 1 year pain free - my CH's caused by dust allergy Post by anubis44 on Apr 8th, 2018 at 11:44am shooky wrote on Mar 31st, 2018 at 6:01pm:
Thanks for the thoughtful comments. I do have one very recent experience to point out in support of the dust mite protein being the cause for my CHs. The night before last, I stayed at a hotel where, for the first time in over a year, I slept in a bed without dust mite pillow/mattress covers. I figured that, between my allergy shots and taking a cetirizine before bed, surely I'd be fine. It was just ONE NIGHT after all. Then, yesterday evening, a full 14 hours later, I began to feel the telltale sensation of a CH coming, but only very weakly. This was the very first time I had felt this sensation in any kind of strength since I began to religiously use dust mite pillow/mattress covers. I did drop another cetirizine (first one that day), a couple of 10,000IU vitamin D3 tablets (which I hadn't taken in a while) and I also took my usual trazadone sleeping pills. Importantly, I did not actually end up getting a CH, but it was close. What I will say is that, at least for me, it has been proven beyond any doubt whatsoever that there is absolutely, positively a link between putting my head on a pillow/mattress without dust-mite covers/clean pillow case slips (and clean bed sheets!) and getting CHs. I really believe all CH'ers, especially those who are chronic, really owe it to themselves to try putting dust-mite proof pillow/mattress covers on their beds immediately. It's a cheap, immediate thing you can do right now to reduce your symptoms. The key is to make at the very least your sleep environment dust mite-free. Taking out any rugs/carpets from your bedroom will likely help, too, but remember that after you remove a rug/carpet, you've probably just swished a bunch of dust mite protein around in the room, so you'll need to wipe down the entire bedroom of any dust, and see what kind of sleep you get that night. Also, bear in mind that most vacuum cleaners don't have hepa dust filters on them, so all you're doing when you vacuum is spray dust mite protein into the air all around in your living environment! A sick irony, eh? Doing all the above has made me CH-free. Even though I am absolutely convinced that it is the dust mite protein which causes CHs, anti-histamines like cetirizine are not enough on their own. It did not stop my CHs, although I still take it because it was necessary to keep my rashes from recurring (in combination with the dust mite allergy shots), and seems to have a contributory, positive effect. It's another tool if you will in the anti-CH arsenal, but certainly not effective on its own. I believe that there are two possible explanations for why cetirizine alone won't stop CHs, even though they are caused by dust mite protein: 1) The body's histimine reaction to the protein is far to strong: it literally overwhelms the anti-histimine. 2) The dust mite protein may be triggering the release of other inflammatory agents in the body, only one of which is histamine. Thank you for all constructive comments! I'm really excited to share my experience in stopping my CHs, and answer any questions. |
Title: Re: 1 year pain free - my CH's caused by dust allergy Post by anubis44 on Apr 8th, 2018 at 11:51am Callico wrote on Mar 27th, 2018 at 2:31pm:
I'd like to put paid to and address the 'misdiagnosed' theory right now. I was diagnosed by Dr. Roberto Giaconne, a neurologist and CH specialist in Ottawa, Canada, nearly ten years ago. On my very first visit, I actually started to get a CH, and he personally saw the tearing in the eye, drooping eyelid, and heard my descriptions of my symptoms (onset between 20-45 minutes after going to bed, daily headaches over a period of weeks, in 'clusters', initial onset in early adult years, etc. etc. He told me that I absolutely had the classic symptoms of cluster headache, no doubt about it. I have been seeing him for my CHs since, and at no point has there ever been any doubt in his mind whatsoever that I am presenting the classic and established symptoms of CH. He is one of the leading CH doctors in Canada. There is no chance that I have been misdiagnosed. Is it possible that there are variations withing the CH spectrum? Possibly. But I am a CH sufferer plain and simple. I have gone from being an episodic sufferer, back in 2008, to a chronic sufferer back in August of 2014, at which point I took the question of how to stop my CHs into my own hands, as my specialist told me that his known options were extremely limited and far from consistently effective. I am a Cluster Headache sufferer plain and simple. |
Title: Re: 1 year pain free - my CH's caused by dust allergy Post by SamR on Jun 14th, 2018 at 6:16pm
Am I the only one who thinks this is too damn good to be true? I've been taking the D3 reg for 5 days now @ 50,000 IU to load and havent had much success.
Would you guys recommend I add an nsaid type addition to this first or is it the dust-mites? Could it really be pets as the culprit for this insane disease? Honestly the first time I started getting these was when I moved-into my girlfriend's (now my wife's) house and she had a cat. Before then I never had a pet in my life but was always allergic to cats. We now have 3 stinking cats and a dog... |
Title: Re: 1 year pain free - my CH's caused by dust allergy Post by Peter510 on Jun 14th, 2018 at 6:34pm
Sam,
5 days of load dosing the D3 Regimen is not usually sufficiently long to see the benefits. It takes a few weeks to complete the loading dose schedule, to get your serum levels high enough. Did you get your bloods done before starting on the Regimen? I am not a lover of domestic animals, but when the kids were young we had a German Shepard for a few years and then a cat for the next 14 years. Bloody hairs everywhere. No pets for the last 5 years and no more will be tolerated. I don’t think my Clusters were effected then and certainly didn’t improve when we became pet free. I’d suggest completing the loading dose stage and get your bloods done then. Hopefully you will be feeling an improvement by then. Peter. |
Title: Re: 1 year pain free - my CH's caused by dust allergy Post by Sean McE on Jun 14th, 2018 at 8:14pm
Gotta agree with Peter, 5 days is not enough time, at least it wasn't for me. 7 days at 50,000/day saw some improvement but then I added one 25 mg Benadryl at night at that was a game changer...I'm now almost 2 weeks PF since. Cycle is still on though cause I get the occasional little shadow. Batch recommends a first generation antihistamine if you've got allergies...I doubt allergies cause CH's but I do believe they aggravate CH's.
Sean |
Title: Re: 1 year pain free - my CH's caused by dust allergy Post by sj904fighter on Jun 18th, 2018 at 9:28am
I think it's Fan-Freakin'-Tastic that you've found something that works for you. To go through what we do, then become Pain free, well, there's not much better than that.
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