capsaicin / apple cidar vinegar / breathing techniques

[Dany]

I'm a new member with chronic CH for the past 18 months. I've read that capsaicin cream can be helpful for CH, but I can't get it anywhere. I made my own by following a basic recipe I found online, for back pain. By simmering a tbsp of chili powder with a cup of olive oil. Put that mix in a jar in the fridge and when I started to have a cluster, I would take a tbsp of the mix, swish it around in my mouth for about a minute and swallow it. I think it might have helped (placebo effect?) for a few CHs, but it's no guarantee. I also did a mix of the above, plus strong coffee and ginger, all simmered together. It was actually delicious, but I don't think it helped much. On clinicaltrials.gov I saw a CH study with a nasal capsaicin spray, but the trial was stopped and I've read nothing about any trials since then. It appears that some drug stores might carry capsaicin creams, but they're for back pain and typically include all sorts of other ingredients for back pain, which could make the CHs worse, especially if you're hypersensitive to odours around a CH.

I also read that apple cider vinegar might be helpful with neuralgia and nerve pain. So I made a mix of 70:30 water and ACV, stuck it in a glass jar in the fridge. As soon as I get shadows, I take a sip from the jar, swill it around in my mouth, spit it out, then chase it with cold water. I do this up to five times. Sometimes it helps, I can avoid an extreme attack, or cut it down to less than 10 minutes. I also put straight ACV on a cotton pad and apply directly to the throbbing temple, and to the skin outside the nasal cavity. (I don't put it up my nose.)

I do this while doing a sort of "Bohr" effect breathing technique, which is supposed to increase the efficacy of oxygen, by increasing red blood cells. This is one video showing the technique, but when the CH hits extreme, I double the number of inhales/exhales to get more oxygen. https://www.youtube.com/watch?v=UZKivmRajgE Sometimes I do squats in place while I do the above. (It's hard to run around when I have to keep my eyes covered from light sensitivity.) But I do wonder if this diverts oxygen and red blood cells to my muscles, away from my head, which might cause increased vasodilation?

Anybody used any of the above as DIY hacks to curb CHs? The ACV is easy to tote.

I plan to start on the oxygen therapy protocol one of these days. But so far my clusters are extreme for about 15-30 minutes (and I'm lucky that I typically only have one per day) and I'm not sure if oxygen will help since I read that it can take 15-30 to get relief.

I just started the vitamin program, though I'm only at 5,000 IUs of vitamin D daily (and the required combo of cal and mag) right now. 

Thanks for any feedback. This forum has provided me with incredible info and support for the past year. At first I wanted to believe the pain was due to an impacted max wisdom tooth. And the lidocaine sure did help for a few days post-extraction. But then I had to face the music. For 18 months I've taken none of the meds recommended for CH, and learned a lot from this group about which ones to avoid. I dream of remission, even for a month. Yet I realize I'm incredibly fortunate to have one per day, and sometimes a day off in between. Once I had four in a 12 hour period. My definition of grateful sure has changed since the CH started.

[BoscoPiko]

1 hour ago, Dany said:

I've read that capsaicin cream can be helpful for CH, but I can't get it anywhere.

Hi Dany,

I have read on here of others that have used capsaicin (nasal spray) with an occasional positive report. I've never used it myself, but was able to find something similar on  iherb.com.

1 hour ago, Dany said:

I read that it can take 15-30 to get relief.

You really should procure o2 as soon as possible as it is reported to be one of the best/cleanest ways to abort and attack. Many are able to abort is as little as 7 to 10 minutes. You will want to make sure that your setup includes a proper non-rebreather mask and regulator that allows for a minimum of 15LPM's. 

 

1 hour ago, Dany said:

I just started the vitamin program, though I'm only at 5,000 IUs of vitamin D daily (and the required combo of cal and mag) right now. 

Glad to see that you started on the D3 reg. It sounds like you have been reading on here for a while so hopefully you are including all cofactors with the D3.  

[Dany]

Thanks Bosco. Yes I've read the details about the vitamin combo protocol and the oxygen. Great info, though with oxygen, I surprised to read that you have to go through so much of it. I was hoping that a 3-foot (or so) tank would last for at least a month, if I only had one big attack per day. But even shaving off 5 minutes of the extreme portion of a CH would be wonderful. For me the most extreme clusters involve the high pain in the orbital/eye, and I think maybe the cold water/ACV swish localizes that pain to the upper gum section of the trig, or at least temporarily distracts from the other three zones of fire. Even placebo is effective, until it isn't!

[Bejeeber]

8 hours ago, Dany said:

Anybody used any of the above as DIY hacks to curb CHs?

I did the capsaicin cream inside the nostril way the hell back in the early 1990's, before imitrex was even available in the US. It did abort one attack (which would have been an easier one to abort for me as it was during the initial ramping up phase of an episodic cycle). After that it was only effective at providing me with one spicy hot nostril! I believe it hasn't really caught on because it isn't particularly effective.

Many years later I tried the capsaicin spray in the nostril, but didn't get effective results from it either.

[CHfather]

There's info here that might be helpful: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

For your future reference -- the tooth extraction probably made things worse, because the anesthetic typically used for dental work (and other things), epinephrine, is a major CH trigger.  You can see more about triggers in the file of that name in the ClusterBuster Files section (I think there's also a link to the Triggers file in the link I just gave you above).

Also for future reference, the search bar at the top of the page is a useful tool for information about some things.  Seacrching capsaicin, for example, yields interesting results.  (Search "oxygen" or "D3" would just be overwhelming.)

10 hours ago, Dany said:

My definition of grateful sure has changed since the CH started.

Ain't that the truth!

10 hours ago, Dany said:

I dream of remission, even for a month.

The D3 regimen, properly followed, just might do that for you.  And there's also busting, of course.

[Dany]

Thanks for all the input. Great info in that basic non-busting post. I might try the licorice root since it's listed as a natural vasoconstriction.  I will give the full vitamin protocol some time. Definitely considering the shrooms. Right now, I'm not living in my home city of Vancouver, Canada, but Canada plans to legalize it, and a few new labs there developing natural medical grade psilicybin and MDMA. (They got some press recently after getting FDA approval, and shipping their first batches to Australia.) Vancouver has already decriminalized them, like they did with marijuana in the early 2000s, before it was legalized nationally.

My Chs didn't get worse after the tooth extraction, which was done six months after the C CH started. It had a teeny root and when I saw it (combined with the xray of showing such a shallow root, no abscess, etc) I thought, "No way this is the root cause." And before the extraction, based on the xray, the oral surgeon said that my described pain couldn't be due to the tooth. She said maybe TMJ or sinusitus, which I knew I didn't have. Though I have definitely developed jaw stiffness, facial pain, tenderness with C CH and I do find that some TMJ exercises provide a bit of help opening up the nasal passage and relaxing my facial muscles. Every day is a DIY clinical trial. 

[Amholla3]

On 3/8/2024 at 3:23 PM, Dany said:

Thanks Bosco. Yes I've read the details about the vitamin combo protocol and the oxygen. Great info, though with oxygen, I surprised to read that you have to go through so much of it. I was hoping that a 3-foot (or so) tank would last for at least a month, if I only had one big attack per day. 

I have an 80cu tank which lasts me about a week, but I try to conserve it as much as possible so I don't use it for shadows. So about 1 time per day. Sometimes more since I end up needing to use it longer than necessary because I waited so long to use it... want to make sure I "need" it, which isnt smart lol. Definitely not a good feeling to be "rationing" a treatment but it's hard to get to the store for a refill, for me at least. My wife will sometimes go for me which is nice. 

[Dany]

I guess I'm using the word shadows incorrectly. I meant that I start trying to bust at the first sign of a CH. Amholla, I find that waiting just a minute too long will lead to a full-blown attack. I typically get mild symptoms for about five minutes before it ramps up to full tilt. Trying to bust instead of waiting and hoping it won't ramp up to an extreme, which rarely happens. I've read comments from others here, saying that they might have to try to bust a number of times in one day, but eventually the extreme CH happens. That's often my experience. Yesterday I had one mild, busted it with ACV in less than five minutes (ACV swish five times, chased with cold water), but an hour later I had to do it again, this time it went to moderate level, but not to full tilt. I was expecting it to come again, maybe in the middle of the night. (Mine typically happen between 3-5pm, but if I skip a day, it might happen overnight, hard to predict when the next one will be, though they're often 24 later.) But this time I didn't get one overnight.

[FunTimes]

2 hours ago, Dany said:

I've read comments from others here, saying that they might have to try to bust a number of times in one day

Dany, I think your getting your terminology a little mixed up here. You abort your attacks during the day with things like oxygen, energy drinks or whatever your go to is. You Bust a cycle with alternative medications that are covered on other parts of the forum. Shadow would be the feeling of a cluster attack coming on but does not fully set in and passes. The ramp up is the time that you have leading up to what you know will turn into a full blown cluster. 

[Dany]

Okay Funtimes. In that case, I have yet to "bust a cycle." I have had CHs since june 2022, so I would be in the chronic category. I haven't had a "cluster" period that ended.