Newbie here

[Spud]

Hi all. I've been an episodic clusterhead for about 33 years. Every 2 to 3 years for about 12 weeks is typical. I'm trying to find out about prescriptions that "Play Well Together" with the psilocybin method. I am currently taking Cyclobenzaprine (1st time and the jury is still after after 30 days) and am wondering if anyone knows if the two get along. Thanks for listening. I am so happy to find folks that have some idea of what I am going through.

[CHfather]

The good news is that it's highly unlikely that Cyclobenzaprine (flexeril), a muscle relaxant, is going to interfere with busting.  It's always possible that I have this wrong, and others will correct me.

In other news: Cyclobenzaprine--WTF??  I've been here for ten years and read hundreds of posts in which people describe the meds they are taking, and if there have been three other people who have had that prescription, I'd be shocked.  I've never seen any research that it helps with CH.  Maybe some discomfort can be ascribed to muscle tension, but I seriously doubt that flexeril can address it at that level.

I'm probably being overly cranky late at night, seeing another person with an prescription from an actual so-called medical professional that is highly unlikely to have any value, so don't take me too seriously. Maybe I'm turning into Potter (very inside reference). As one actual medical professional has said here, if you take something for six weeks and you don't know whether it's helping, it isn't.  So the jury can be out a couple more weeks.

I'm going to imagine that over the course of 33 long years, you have tried the more conventional CH medications and concluded that they didn't work for you--verapamil, oxygen--or maybe you didn't like the side effects of triptans or prednisone. And since your cycles are relatively infrequent, maybe you don't have reliable sources for those things. One thing I can tell you, particularly regarding oxygen but also with reference to those other things, is that they are all prescribed wrong more often than they are prescribed right, so most people who think they don't work for them probably just weren't doing it right.  Also, non-pharma things like the vitamin D3 regiment are hugely effective, but largely unknown outside of CH message boards.

You don't have to respond to all that. Just me "venting," I guess. Busting is a good choice, but it can take time, and it's nice to have some effective abortives or preventives while you're doing it.  If you haven't seen the general principles of busting as listed in the blue banner at the top of each page ("New Users - Read Here First "), that'll give you a good starting place.  Those same principles are listed at the very end of this file -- https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ -- along with a bunch of other info, most of which, as a CH veteran, you probably already know. 

[Spud]

Thanks CHfather. The Cyclobenzaprine was definitely a reach . I have tried many of the conventional drugs over the years and triptans are effective at aborting a CH but I need to pick and chose when to use it as I am not taking that stuff everyday for health and financial reasons. I have yet to try O2. As you said given the frequency of my episodes I just haven't gotten to it.

My number one most effective method for aborting a CH (for daytime events) has been deep breathing and consciously relaxing my next muscles (that why I hypothesized about the muscle relaxant). If I can get away from everything when I first get the signs I can usually abort within 10 minutes (sometimes not). This has been a life changer for me. My issue is the arrival of the beast at night. By the time it wakes me the party has already started and it is a real challenge to slow it down at that point. 

Absolutely no perception of crankiness on your response. I very much appreciated it. I have read through the basic non busting busting info in the past but need to re-read it. I will look more closely into the D3 regiment.  Just thinking of what I have available with regards to busting.

Thanks!

 

 

[Spud]

Thanks CHfather. The Cyclobenzaprine was definitely a reach . I have tried many of the conventional drugs over the years and triptans are effective at aborting a CH but I need to pick and chose when to use it as I am not taking that stuff everyday for health and financial reasons. I have yet to try O2. As you said given the frequency of my episodes I just haven't gotten to it.

My number one most effective method for aborting a CH (for daytime events) has been deep breathing and consciously relaxing my next muscles (that why I hypothesized about the muscle relaxant). If I can get away from everything when I first get the signs I can usually abort within 10 minutes (sometimes not). This has been a life changer for me. My issue is the arrival of the beast at night. By the time it wakes me the party has already started and it is a real challenge to slow it down at that point. 

Absolutely no perception of crankiness on your response. I very much appreciated it. I have read through the basic non busting busting info in the past but need to re-read it. I will look more closely into the D3 regiment.  Just thinking of what I have available with regards to busting.

Forgot to mention, I also increase my water consumption and take turmeric 3 times a day. Started this about 10 years ago and it appears that it lessens the number and severity a bit. Could be fooling myself but sometimes that what it takes.

 

 

[jon019]

9 hours ago, Spud said:

 I have yet to try O2. As you said given the frequency of my episodes I just haven't gotten to it.

you're making me nuts spud....ONE abort with O2 will make it a worthwhile "get" and probably eliminate the need for most if not all the meds you've tried/trying.....i can still cry at the memory of the first hit being aborted like water down a drain.... and that was almost 40 yrs ago....

Quote

My number one most effective method for aborting a CH (for daytime events) has been deep breathing

...imagine doing that with O2...it's about a thousand times more effective...

Quote

My issue is the arrival of the beast at night. By the time it wakes me the party has already started and it is a real challenge to slow it down at that point. 

....used to happen to me....had the O2 tank set up next to bed ...everything ready to go...slap the mask on and crank the valve....3-5 mins later back to sleep. keys: rig ready, train yourself to wake upon hit (it's hard but doable), keep lights off/eyes closed, activity minimal, no angst/anger/adrenaline, try not to fully wake....no thoughts...just breath.....

...yes...do the D3....and water is good

 

best

jonathan

Edited December 4, 2020 by jon019

[Spud]

Hey Jonathan. Just ordered a 0 to 25 lpm reg and the O2 kit from Clusterheadaches.com. Waiting for the doc to call back for an O2 prescription.

17 minutes ago, jon019 said:

you're making me nuts spud

If I had a dime for every time I heard that line. I am the poster child of procrastination even to my own demise. LOL

Thanks for the advice. Once I get my O2 rig going I will definitely follow up to let you all know.

Spud

[jon019]

...throw in an energy drink or strong caffeine drink slammed at first sign of hit.....with a box of zomig ns (5 mg) back for abort of last resort and you are golden....

...D3 and or 'shrooms may make the above moot....

[CHfather]

 

Good on you, spud!!!!!!!!!!!!!!!!!

As jon' suggests, it might not hurt to have a triptan, too.  If the nasal spray works for you (as it probably will) for backup to an O2 system, that's great.  If only injections work, be aware that you can reduce the physical and financial consequences very significantly by getting three shots from each autoinjector.  We can help you cross that bridge if you come to it.

[Spud]

Quick update. Getting no response from my doctor after multiple phone calls requesting O2. NO RESPONSE?!?! So today I have found a new doctor recommended by a nurse practitioner friend who I respect greatly. We shall see. 

With regards to busting, round 1 went well with a decrease in overall intensity but still many shadows. Still multiple CH during the night although only 1 last night (hurray) but all have been aborted within about 10 minutes with deep breathing and slight hyperventilation. I found that going the full bore method for hyperventilation with aggressive exhalation would make things much worse before they got better. I have found a middle ground that still gets me tingling after about 5-10 breaths but doesn't jostle the beast as much. Whatever works. 

Bottom line, things are trending better I believe. Next bust tomorrow.

With regards to D3, I have had a nice long conversation with Batch and have things on order. Want to isolate the variables, so one step at a time.

Quick question about caffeine as Jon had mentioned it above. I had been told (from my mom some 30 years ago) that I should stay away from caffeine as much as possible because of rebound headaches. This is the first episode I have not done that and still have a cup in the morning. Seems to keep be CH free until later in the day. After Jon's comment I wonder if it shouldn't be taken more regularly. My apologies if this has been covered heavily in the forums and I'm just too much of a slacker to have seen it.

Thanks for help guys. I'll keep you updated. 

Spud

[CHfather]

I don't think many (if any) people think of caffeine as a preventive, but it works great for many to stop an attack that has begun.  I would consider drinking some as you start your breathing routine when you have an attack.  There was a research study once showing that breathing cold air was just about as effective as O2.  Maybe you want to consider doing some of your breathing by an air conditioning vent, if you have one, or even at an open freezer.  Or not -- not sure you want to mess with what's working okay now.

Hope this new doc is responsive!  And glad to see you getting the D3 in order.

Regarding your mother's observation, I sometimes speculate that significant overuse of caffeine might worsen some aspects of CH.  This is just fuzzy speculation, based on my daughter's experience. The "energy drinks" that are recommended, particularly the smaller energy shots like 5-Hour Energy, can have a lot of caffeine, and that can be kind of jangly if overused.  I don't think that some coffee in the morning and some as you abort an attack will have any counterproductive effects. 

[jon019]

.....excessive use of caffeine (and i would suspect that "excessive" is user dependent)  is a known cause of rebounds.....

.....inconsistent use is a known cause of headache (that i know not the proper term for)....consider the well reported "weekend headache" where the worker drone abstains or greatly reduces typical weekday consumption...and the body cries out and objects to lack of the normal  with a  "reminder" headache....

....personal....anecdotal...talkin about me.....over years of dancing with the devil practice.....I found that abstaining from caffeine at ALL times, other than when hit, resulted in fewer hits and improved efficacy when used FOR a hit. the body is a marvel at maintaining stasis...it'll get used to and regulate for all kinds of differing factors. if one regularly ingests caffeine there becomes an amount that is "normal" and effects are dampened.....abstaining and then introducing a large bolus of caffeine  as an abortive at least temporarily overwhelms the dampening effect, and the desired vasoconstriction aids in CH suppression (always hit the O2 concurrently, if possible). works for me.....YMMV

....triple strength, HOT coffee used to be my go to...a little inconvenient and hard to get down but effective. energy drinks, kept really cold and pounded FAST became an effective replacement, i think the additional ingredients (taurine, et al?) improved effect...but DAYUM what an awful taste, and SO MUCH sugar or the dreaded trigger, aspartame. the 2 oz 5-hr energy types became my go to.....LOTS of caffeine+, minimal sugar, and easily carried everywhere............

best

jonathan

 

Edited December 9, 2020 by jon019

[Spud]

Hello,

Quick follow up. I've got a new Primary Care Physician and have gotten the results of my OH 25 D2 test. 14 ng/ml which is deficient. Been waiting on the protocol until I had the baseline numbers. I will be starting the D2 (plus cofactors) today. 

The reason that I had the luxury of waiting for the blood test results instead of just starting is because the busting method was an incredible success! No headaches after the 2nd installment although I went ahead with the 3rd installment to complete the regimen. I have been CH free since 12/10 with very slight twinges that I wouldn't even call shadows. After bust 1 there was definitely a shift in symptoms for the best although a ton of shadows for several days leading up to bust 2. Ginger tea was my friend. After the 2nd bust all was well except for a nice tension headache that was easily attacked with ginger tea and Excedrin.

FYI I was about 6 weeks into my episode which are typically 12+ weeks long.

Thanks for all the help CH Father, Jonathan and Batch! Your tips in this blog and previous ones have been very helpful and you have made my quality of life so much better. And thank you Mr. Bob Wald for having the courage to advocate for us!! I owe you big time.

Peace and love,

John