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Agree with Jeebs on all counts (except insofar as those counts apply to me), and with Jon'. Just a reminder that welding oxygen can be used as the basis for an easy to set up, cost-effective O2 system. Lots of people with CH do it that way. You've already been exhorted about the difference O2 can make. Don't blame you for your misgivings about more meds. For those who don't know the brand names, Xyrem is sodium oxybate and Xyway is a low-sodium version of Xyrem. The study that Kprice mentions, on four folks with chronic CH, showed results that were pretty amazing -- 90 percent reduction in attacks for three of them, over an extended period, I think. There was a person here, with chronic CH, whose attacks stopped for quite a few months after taking Xyrem, but then started again. Maybe there's more about sodium oxybate over at clusterheadaches.com.

....a) oxygen can have such dramatic and positive effects for CH treatment that you really should go all out to get it....which may include some shoving of the civilians who just don't get the URGENCY CH hits cause. quick, easy once dialed in, nunna the nasty side effects of some of the meds we use...life changer for some of us. ....b) i TOTALLY get wanting to stick to the hard earned strategies that one uses to deal.....been there, done that. but, there just might be another way that works, might even be better......and it's always nice to have alternatives. clusterheads sharing about beast wrangling is why we're here.....that and a cool family that happen to understand and care... .....there are countless clusterheads who would be doing a happy dance for access to the vials. BIG score! Nothing to add to @Bejeeber concise and vital primer. above...agree with everything he said! Note from experience re self injecting. The only ooky part is the first time or 2....after that it's no big deal no more.... PS....26 D reading is NOTHING. the lowest level i've ever heard of lowering CH hits is in the 60's....i believe batch @xxx would say 80's or even higher. ...hope he comes along to comment. benefits beyond CH for your overall health too.....

Good info in that follow up, @Kprice, thank you. My take at this point is that if you're going to continue to use triptans, there is a semi-hidden opportunity to get better results while significantly reducing risk of the bad side effects. It is there in THIS EXTENDING YOUR IMITREX LINK that the venerable @CHfather had also supplied. Reasons: Yep, you'll be greatly extending your supply, with much less risk of running out at end of month You should still get very reliable results with the 2mg doses. I found that pretty much impossible to believe at first, so I went with 3mg, but when I finally tried 2mg, even with very old imitrex, wow, it worked. In my experience injections with plain old syringe are surprisingly way less flinch and cringe inducing than the auto injector! Once you get the muster up to do the first one, you realize "oh this is nuthin". Of course 2 mg injections should present way less side effect risk than 6 mg, right? Syringe pro tip for abdominal area injections: pinch an inch of belly fat if ya got it, skin if you don't, and inject there. Most often it is practically painless. All this said, I would still advocate for use of O2 first whenever possible, triptan to only be considered as emergency back up, and I applaud your resolve to pursue the O2 again.

My clusters have seemingly evolved over the years. Like others, I was sure I was dying or had a brain tumor when they first started. Not knowing the first thing about cluster headaches. They started when I was about 16 or 17 years old, waking me at 3AM. Quickly peaking & lasting 3 hours at a horrid intensity. Idk if it's the meds over the years or what, but for the most part now, I'll wake with a shadow. & depending on the intensity of the shadow I'll either take a tablet or nasal spray. Since I only get 6 nasal sprays a month, I usually opt for the tablet first. It seems like there's some sort of intensity threshold there that determines the effectiveness of tablet vs nasal spray vs injection. I RARELY, if ever, have any nasal sprays left before it's time to refill. I MAY have a tablet or 2 left during a good month. I get 50mg tablets but usually try 1/2 first cause the nausea isn't so bad with just 1/2. & I hardly ever use all 4 of my injections I get a month. I'm sure that's still a pretty good bit of sumatriptan to be taking in though. Oh, & the nasal sprays are 20mg sumatriptan. I had looked into the d3 regimen years ago when I first found cluster busters. & I did request to have my vitamin d levels checked at my next dr apt. I believe it came back at 26ng/mL, which I've read that some consider low. I'll look into the d3 regimen on here further & hopefully get started on it soon. Sorry for the lengthy post guys. I've also been diagnosed with Idiopathic Hypersomnia (although, they didn't completely rule out Narcolepsy) in recent years. Dr wants to put me on Xywav, but I have concerns considering the reactions I've had to sumatriptan. I did read about a small study on 4 cluster patients who were treated with Xyrem that showed promising results. Just a tad weary of putting something else in my body. Thanks again yall!

...welcome....glad yur here, sorry you have to be....now, ...where's the OXYGEN?

Hi Ta, There is a plethora of info on this site specific to the D3 regimen. In the top search bar of the forum just type in D3 and be sure to follow the instructions from a user named Batch (handle XXX) there is more to making the D3 be effective than just taking the D3 (you need to take the co-factors). You never mentioned oxygen so I am unsure if you have a scrip or have tried it or not but many on here swear by it to abort. It works for me from time to time. There is a video on here that goes over the breathing techniques that seem to be effective with a non rebreather mask. I was able to get the intensity of attacks to be manageable without the triptans on the D3 reg. I so understand the frustration with folks mentioning migraine etc. I think a majority of us have gotten that response a time or 2..

Lol of course that one goes through..

So sorry to hear you are struggling. Sounds like you are going to need a fusion which are highly successful procedures in most cases. Will likely lose some range of motion but the pain will be gone so it seems like a far trade. Spinal surgery is not for sissies and since you are anything but a sissy you will do well. Make sure you have someone who has been at it a long time, has a good volume of experience with the procedure and is nice to your wife. Stay strong.

https://vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 This link will get you started on the D3 Regimen. It is the first one and what I follow mostly. You will find that 8k of D3 is insufficient. More is needed. Along with the co-factors. I use this year round for my CH. It works. ATB!!!

@CHfather, my neuro did write a script for O2 but there were insurance hurdles that I guess they'd never followed through with. It probably is time to seek another doctor instead of pushing it off. I feel like I manage way better than I used to so I've more or less just accepted my current treatments. I don't think I've experienced those reactions with just the tablets. The most recent time was after 2 nasal sprays - taken probably 2 hours apart. The injections DO always work. There have been many times I've not had any though & I usually try to give the other methods time to work before using the injection. My most recent script I picked up were the vials - idk why, but they kinda freak me out worse than the autoinjectors lol. But I'm also trying to use up my oldest meds before getting into those.

Thanks for the responses everyone! I'm thankful (& hopeful) seeing so many finding some relief! Those side effects definitely seem familiar @Bejeeber. I did get my hands on some mushrooms a couple times. However, I didn't have the experience every one around me had. Maybe a mild euphoria but I did feel an unusual tightness in my jaw that I also get with sumatriptans. My best guess is I didn't wait long enough after taking sumatriptan. Haven't been able to find any more since then.

There is a brief discussion/illustration of hyperventilation beginning at about 7:20 in this video (which is at this CB site): https://clusterbusters.org/resource/oxygen-therapy-for-cluster-headaches/ Batch (now xxx) describes and discusses a hyperventilation process here (no video) -- https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/ -- but he is doing it differently. He has 30 seconds of hyperventilation with room air -- ten fast, intense inhale/exhale cycles of about 3 seconds each -- followed by a deep inhalation of O2 that is held for 30 seconds and then forcibly exhaled with a strong "crunch," then followed by another 30 seconds of hyperventilating with room air, then another inhalation of O2, etc. You should read what he says about all that. It begins following the instructions and photos related to the "redneck bag." I found it a little more jumbled than Batch's usual descriptions, but the info is all there.

If you can get off the triptans get some o2 if you haven't already and really look in to th D3 regime its help so many people with CH . I know it's easier said than done with the samitriptan . I was the same it was the only thing I had prescribe by my neurologist. It took the pain away within 5 to 10 mins so I thought it was a God send but when I look back all it did was made my cycles more intense and prolonged the cycle

.....^^^^^^^^^this is very good advice....i wish it wasn't so but i've lost count of how many times i've seen that hyperventilation is THE way to use O2. it MAY be the best (probably but not universally)... but it sure as hell aint the ONLY. i personally can't hyperventilate, but thru hard earned experience found that very slow deep in/out was extremely effective. may not get the max O2 in circulation in the minimal time, but it worked...it DID calm me the f down, and eliminated the adrenaline, overheating, agitation, anger, spastic movement, stress hormone reaction that are the hallmarks of a killer hit. mixed in, or after, i progressed to a very similar technique as described by Freud. my fear is the seemingly never ending reports from newer clusterheads that "oxygen doesn't work for me". well....maybe....and maybe it's just a particular technique that doesn't..... and you.need.to.keep.trying the various methods. ....there...rant over (afterall, aint that part of what CB is for?)...this ones a pet peeve...oxygen made all the difference in giving me a life....

Hi @Kprice, FWIW it looks like maybe some similar sumatriptan side effects are listed at mayoclinic: Less common changes in patterns and rhythms of speech confusion dizziness fast, slow, irregular, pounding, or racing heartbeat or pulse trouble breathing Rare lightheadedness, dizziness, or fainting severe numbness, especially on one side of the face or body trouble speaking or swallowing twitching weakness of the arms and legs And as @Dallas Denny mentioned, you may wanna revisit preventatives for consideration of something more consistently effective. For many of us that includes busting, as seen at the "New Users - Read Here First" blue bar above^^^^^^

Hi K...welcome... ...agreeing with Denny....these dramatic symptoms are highly unusual. LOTSA folks have unpleasant/alarming reactions to the hammer that is suma (esp the dang 6mg stat)... but that is typically much more transitory. talk to your pharmacist...make sure they have time to listen/digest even if that means an appointment. those behind the counter are frequently overwhelmed. i'd try to find one connected with a health org or a large corporation....those have specialized pharms in supervisory positions they can refer you to..... or consult themselves. good luck...keep poking around....this sounds concerning and well worth pursuing... best jonathan

I once had a side effect to tramadol -- my heart rate dropped into the 30s -- and at some later point, a doctor blew this off as impossible. But I looked it up and bradycardia was listed as a "rare side effect." Your reaction is your reaction, and it's a message saying that it's probably a good idea to explore other options, such as the Vitamin D anti-inflammatory regimen (which by the way gave me, a chronic, five and a half years of total peace). There's also a new drug, Emgality. Even without the bad reaction, triptans are not great for our bodies. I noticed that I had more and more palpitations and gave them up for that reason. Whoever prescribes your sumatriptan needs to know about your reaction.

This thing is adamant about not allowing me to respond