Kevin B. Posted January 31 Share Posted January 31 This is Kevin again at 2:30 AM EST. Having my now nightly attack between 2:30 and 530 in the morning. Been getting usually 2-3 every 24 hour period especially the last 2 weeks. Just before that I thought my CH was on the wane because started to get them about once every 36 -40 hours which was a huge relief at the time. Then it got worse again. Big disappointment...never had a cycle this long before. Let me just say I'm an active 75-year-old and didn't start CHs until I was 68 or 69 years...only 5 or 6 years ago and only diagnosed in Jan '24 I've been taking triptans and 5 hour energy drinks extra strength which usually shorten the duration to 15-30 min. I take the pills, nasal and the injectable...one of those depending on the severity of the attack I know about the O2 of course but thought I'd wait until the Spring and summer to really get into that...as well MM but will not get into that unless I knew someone that I could procure from. Having said all that, I finally got all of the "ingredients" of the D3 regimen as talked about by Batch "or XXX" in his vids and writings. I've also checked out all of the various links sent to me by the kind people at Clusterbusters. My big question is about the blood tests suggested or needed if going on the D3 method. I have been completely spaced out because of only 2-3 hours sleep a day and pain and absolutely do not understand the graphs or the medical terminology spoken about these tests. I would really appreciate some simplified or in laymen's terms how it works. The other problem is imagining how in the hell I'm going to explain this whole deal to my Primary...don't have a printer so can't, at this time, print out the Lit. Really so tired and worried at this time about this turning into Chronic CH. Seems never-ending. Thanks so much for any simplified instructions. Everyone here is so kind, take care you guys. Later Quote Link to comment Share on other sites More sharing options...
Kevin B. Posted January 31 Author Share Posted January 31 BTW, I do know about the problems re: triptans and how they can extend cycles and frequency of attacks but if I have a 5 or above, I'm not going to deal with that. Just can't. Quote Link to comment Share on other sites More sharing options...
CHfather Posted January 31 Share Posted January 31 I will urge you to start the D3 right away, without waiting for a lab test. I promise you that unless you have been taking regular D3 supplements at high levels, your D is low. (If you had a thorough annual physical (Medicare, I assume), your D was probably tested then.) The best way, as you say, is to ask your doctor to prescribe the vitamin D test. If you don't want to go that way, or get refused, you can have the test done at a lab without a prescription. Your doc should be okay with ordering the test, just in general because most docs appreciate the importance of D. Also, if s/he has any respect for what you are experiencing with CH, it seems like it ought to be enough to say that you have seen some promising results from an anti-inflammatory regimen that includes D3 and you'd like to try it. (I would try to avoid telling the doc what the amounts of D3 in the regimen are, because some can get a little freaked out by that.) For the lab test, if you just google, lab vitamin d test near me, you should see places where you can go to get the test, and pricing, etc. There is also a mail-in test that you can order online (or maybe find at a pharmacy). I think this is the least reliable (and slowest) method. I hope you are splitting your Imitrex injections. Getting partial doses from sumatriptan injectors (Imitrex, Imigran, etc.) - ClusterBuster Files - ClusterBusters For a pill to have any chance of helping, it has to be taken at the beginning of -- or before the beginning of -- an attack (some people can do that if the attacks come at predictable times). I'm sorry you don't have O2. Some people get good abortive results from deeply inhaling cold air, from an air-conditioning vent or outside, if it's cold out. Please get back to us if/when you are considering busting. This isn't the right board for discussing it, so I'll just say that there are substances that you can legally buy and possess that are just as effective as MM (eliminating the sourcing problem you mention). And they are typically tripless. 1 Quote Link to comment Share on other sites More sharing options...
Kevin B. Posted January 31 Author Share Posted January 31 So, for the D3 regimen, what you're saying is that the testing is for the D3 and not necessarily the co-factors? If so, that makes it easier for my not so nimble brain to understand. That's a good thing. As far the injections go, I'm trying not to use them unless it's a 9 or 10. I did go out and buy a PVC pipe cutter for 18 bucks and it doesn't cut the injector, it just kinda crushes it which is worthless. I don't know what kind of cutter that the YouTube guy bought but mine is not it. But you are saying that if I get the vials, I can just hit the blue button and inject into the vial and not my skin and it will work? That I could do. I was just afraid to do anything that might waste the med. Thanks for your time CHbro. Very much Quote Link to comment Share on other sites More sharing options...
CHfather Posted January 31 Share Posted January 31 I am very, very sorry!!!! I should have looked before I leaped! In my household (I don't have CH; my daughter does), we have only ever tested for D, and there have been no issues. Again, I am very sorry for my error. I see that the calcium/PTH test is also available from labs, if your doctor won't order it. (I guess it is a logical addition to the D test for a doctor to order, since D can potentially imbalance calcium and PTH.) I am hoping that others here will tell you how they approached their doctor about this -- and, you can send a message directly to Batch, who has always been very happy to advise people. You would not be imposing on him -- this is his baby, so to speak, and he has always been very generous with his time. To message him, click on the envelope icon at the top right side of the page and put xxx into the "To" line. The vial method was recommended by @jon019. I'm sure we got it right before posting it, but let's double-check. (We had similar frustrations to yours in getting the Imitrex dispenser open, but found that with patience the cut, keep wiggling, and crack open method eventually worked.) (Damn, I wish you had O2. That will so dramatically change all this.) Quote Link to comment Share on other sites More sharing options...
Kevin B. Posted January 31 Author Share Posted January 31 jon19 did say that. I checked. I just need to get vials and syringes. What do the vials look like and what size. order on Amazon? No problem re: calcium/PTH. I'll just have to include that with the other. Things are clearer to me especially since googled the test and it was explained to me clearly. As far as the O2 goes, that is still something I will look into in earnest over the Spring and Summer. If this cycle goes away as it should, it won't occur again until the Fall/Winter comes around. I get 2 cycles a year, historically anyway If the D3 really works, maybe it won't be necessary. I can only hope because this is destroying my quality of life to put it mildly. As always, thanks! 1 Quote Link to comment Share on other sites More sharing options...
CHfather Posted January 31 Share Posted January 31 The Dr. Reddy 6mg injectors are both .5ml. Sumatriptan - Sumatriptan Injection - Migraine Medicine So I would imagine a 1ml vial would work fine. Again -- if my reasoning is wrong, I hope others will correct me. Lots of 1 and 2 ml vials at Amazon. I called my pharmacy, part of a national chain, and they don't stock vials. Quote Link to comment Share on other sites More sharing options...
jon019 Posted January 31 Share Posted January 31 ...the inject into another container then draw from that is what i would call a hack of desperation...like when folks run into issues hacking the statpens (seems its harder than it used to be with new design). what you REALLY need (besides OXYGEN) is the 6 x 0.5 vials of Sumatex/Imitrex. using insulin needles you withdraw 1/3 of vial which is 2 mg med....this works for most of us. you can always up the dose as needed. i could get 15 aborts per script with a much lower chance of rebounds. since you are already getting the auto injectors its just a script change. periodically this med in this form has shortages...i just checked and its available in half a dozen pharms in my area. call around ...last time i checked Amazon Pharm did not carry...but that was a while ago.... ...the D3 regimen is a near must...us seniors are low in D and it is critical for many health functions besides CH... ...now then, ALL THIS (except d3) CAN BE MOOT once you get OXYGEN. saved my sanity, perhaps my life starting decades ago. absolutely the best abort for most clusterheads when used at the right flow (15 lpm to start), right non rebreather mask, and a breathing technique best suited for you....and don't let 'em pawn off a concentrator on you...gotta have pure O2 and enough flow which they don't. ...get thee OXYGEN brother!! best jon 1 Quote Link to comment Share on other sites More sharing options...
Kevin B. Posted February 1 Author Share Posted February 1 Hey CHfather and Jon...I ordered the 2ml vials because the other sizes had the self-healing tops which I didn't want, wanted the screw off tops. I also ordered the 1ml 31 ga syringes...will both come tomorrow also, I won't try to get the O2, I will get it one way or another!! So tired of this, it's wrecking my life. I started the D3 reg tonight. Thank you both for everything! I will keep you informed. Take Care. 2 Quote Link to comment Share on other sites More sharing options...
xBoss Posted February 4 Share Posted February 4 Hang in there Kevin, the no sleep part is the worst! Hopefully you are closing in on the end. 1 Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.