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Sorry..I'm smiling and laughing, ...oh we get that, no problem......sometimes ya just have to. there are so few times in life when you can laugh and cry at the same time. still vivid memories of catching my bawling self in the mirror a couple times during a real bad cruncher, and bursting out laughing: hair askew, eye closed, face crooked, snot/spit/god know what else smeared all over....who IS that guy!?.... I think, because misery loves company. It's so nice to have people that understand this "thing" ....ask, share, support, make shit up, vent, whatever...we care! clusterheads/supporters are our own best, frequently only, advocates and company...we have to be.... This is my first time trying verapomil. Well the one last night after sleepng 4 nights with no attacks...that's what's concerning. ....oh, i thought you had more experience with it. my experience and observations of most frequently reported over the yrs: takes a 10-14 days to work (which is why a concurrent prednisone/methylprednisolone iv/taper is standard western med treatment), takes a while to dial in, just when ya got it figured stuff changes. 240 mg is a low dose, many go higher (some much higher) so best to start low and build to higher levels if needed. more reported success with immediate release vs extended. lotsa water/fiber to keep things moving along. timing doses to expected hits sometimes helpful. highly recommended to do baseline ecg and repeat as dosage increased significantly due to possible heart rhythm effects (reversible upon discontinuation). a headache specialist neuro (regular neuros can be and usually are as ignorant of CH as regular Dr's) is familiar with high dosage tolerance in cluster patients and can guide you through up/down tapers as well as other control measures. there are those who believe extended use causes ECH to turn CCH. again, an experienced HA specialist would have thoughts on this. i used verap for 7 yrs before dialing in the OXYGEN, energy/drink, D3 and zomig ns. turned chronic 2 yrs after...so never felt a connection. chronics will tell you they'd rather be episodic, episodics just the opposite. having been both, to me it's all the same shitshow, just a different channel. most all tools work, just in different ways....only you can figure your best path. Also worth noting--- I took melatonin last night, 1st night in 4 ....good on ya for finding that, many find help there, be willing to adjust dosage. Benadryl (diphenhydramine) also helps with sleep and allergies that may trigger hits... I like the suggestion of wriiting down possible triggers etc. I have been taking note of attack times start and end. First time ever, because traditionally, I didn't need to---if I was 11:01 pm, it was 11:01 Pm til I was done, apart from the final blasters, which I could never ever get away from.....it's the weirdest thing---i can never get away with no blasters at the end...If I OD'd on pain killer, like rizotriptan, timing it perfectly.....the devil would say-- "nuh-uh boy, I'ma hit you at 3am then.....no free rides asshole." ...a log is a great idea, if you are organized about it there is lotsa great info to be gleaned.... ...i used to PRAY for that last screamer...knowing a) this is gonna be bad!! b) yee-haw, it's gonna be beer-thirty in a few days!! it's all relative... I'm going to try the Vitamin D3. ... do all the regimen...no dabbling.. Have not tried O2 yet, ...YESTERDAY!...there are countless clusterheads who can testify to OXYGEN as a LIFE CHANGER! 15-25 lpm, non-rebreather mask/demand valve/direct from hose, and dialed in (for you) breathing technique all vital... and definitely I normally stay away from energy drinks.....but perhaps not anymore. ...totally understandable...i've never touched one outside of CH need myself....but, incredible difference maker used judiciously. some prefer just a high dose caffeine beverage...really hot or really cold for whatever you use can help... But my attacks, the worst ones anyway, come and crack me one after I'm sleeping......however, all of you know that there are worse things than being jacked up on energy at 2am....ummm, like for instance---being tortured behind your eyeball .....nothing regular or planned, but i could pound caffeine and be asleep in minutes....many others report same.... I'll say it again though, it is nice to be among people that know exactly what it is, and I don't have to explain it to friends and family....only to hear- "Oh yeah, I get bad headaches at work too, it sucks kinda bad" ..yeah, sorry, you don't get it my friend ...if ya want a chuckle check out this link: New CH.com Forum - Dopiest responses to CH (clusterheadaches.com) ....poke around the rest of the ch.com site too...priceless info therein....

If anything has been missed in all the great responses you have received from these members of the starting lineup of the CB all-star team, it might be covered in here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

Count me as someone who also finds @jon019's detailed response above to be an epic masterpiece of helpfulness. Now on the subject of episodic turning to chronic, dude don't worry about it! Easy for me to say as someone who couldn't bear such a going chronic thought during episodic bouts, and considered it to be the ultimate nightmare of nightmares concept, but has now made it through 40 (!) years of remaining episodic, with some seriously long remissions. When I've asked chronics how they could possibly think even for a second that it was preferable to when they were episodic, one of the reasons I've heard is the hits haven't been as strong while they're chronic. No guarantee that'd be the case for everyone of course, but it was something. Thing is, you appear to be on the verge of taming this MF with the various ultra effective non-pharma approaches that have been mentioned, so I think you should now be leaning much more towards a solid vision of life restored than horror unleashed!

Back in the saddle! THAT'S what I meant. DAMMIT I wish I could have conjured that.

Also try clinicaltrials.gov and use search boxes.

LOL.. You crack me up.. One would indeed think that in the land of skittle farting unicorns that you could at least get a script for a pool.....

Hi Spida, Sorry you're here but glad you found this place... There really is something about knowing that you are talking with others that understand what you are going through. I myself am not at a place of experience to offer much in the way of feedback as I have only been living with CH for about 2 years and still feel like I'm walking around blind most of the time. I can say that you hit the jack pot in finding this site though:) Lots of awesome guys and gals on here with mucho experience, more than helpful info and humor to boot! Wishing you pain free days!!!

Welcome to the cool kid club Spida. I'm against pharma so my advice is to seek non pharma solutions like D3 and psychedelic busting. Oxygen for aborts etc. Red bulls and hot soaks also work for me when it comes to aborts. I'm sure pharma works great for some people but the side affects can suck. Try to learn as much as possible from here and inform yourself with some weapons to fight this terrible condition. It can be managed fairly well most of the time for most of us. Oh, and keep a log book of your hits and possible triggers. Just knowing your triggers can be very useful and there are many like alcohol, flying, foods, smells, even sitting positions! GL warrior! -Scott

I am one of those that firmly believe this to be true.

I really appreciate you taking the time write up a detailed helpful response Jon. The quote above, not gonna lie, scares the living shit outta me! I'm not sure I'm strong enough to deal with chronic. That was actually my apprehension for pharma treatments, like the verapamil--- the possibility, since so much of this seemed to do with our own bi0-clocks, and the fact that I don't seem to be able to "get away with not having one a night" once I'm in a cycle....it's like getting away with one is an attempt to cheat the devil, and he pays it back, often with two a day, just to catch up, so i never have a balance in the bank....therefore, the thought is real to me, that if i use ways of avoiding individual blasters, or an entire cycle.....this shit may go chronic. I really can't have that. It takes a lot of strength to go 6-12 weeks....365 days.....I dunno how you do it. You must have an amazing outlook on life and positive supportive people surrounding you.

You are very kind I have all the plans of getting back in the saddle... (pretty sure that's what you meant)

Definitely good to see the cowgirl rear her head - she'll be back permanently and in all former glory after this transitory dissociative phase of riding a....um...bucking bronco?....OK forget that pathetic attempt at a rodeo sort of analogy, but I do predict we'll all see reports right here of some seriously extended pain free time gained, and BoscoPiko's mom being herself again.

I know of what you speak....some strains of MJ having become so strong they can actually cause hallucinations, which is so over the top.

I thought I heard my name mentioned...

I have and they kina just scare the bejeebies out of me.. So I only have a consult set for the 28th of this month I figure it cant hurt to learn?

There are trials going on currently, I believe, using schrooms for CH and PTSD. A co-operative union of the VA and Yale (or Harvard). Hey, if I don't think about it weekly, I lose a bit! It is being held in the northeastern part of the country. So, 'probably' is a very real statement. So, lock onto that and march yourself forward with a feather in your cap and a smile on your face. It is going to get better - for the first time ever!!! It has already been proven that MM is a 'best' med for CH, that is why it is in trials! There are people on this site who dreamed of and made a reality of going to Congress to get O2 approved for Medicare patients. After some 6-7 years, guess what? It is now being approved for all old clusterheads. No, we have not 'aged out'! Pretty much all forward progress began here, years ago. Many thanks to those who led the way!!!! I am forever grateful. Go to NIH.gov and type 'cluster headache psilocybin trials' in the search bar. You will find some reading material there. This one will keep you busy for a day or two: The Therapeutic Potential of Psilocybin! Enjoy! Oh, and somewhere in there, it will tell you if it is Yale (my vote) or Harvard (cya).

That's interesting. When I'm getting one, whether it's the rizotriptan or instinct, I dunno, but I crave water, so I sip it constantly, until the attack has passed. ...then I get woken up to pee 3 times...much nicer then the flaming fingernail of Satan lol Good luck and keep up with whatever is working!

Thanks Scott and Bejeeber Me too! ie-- "one ultimate blaster at the end". That is often the signal the end is within a couple days----a succession of true 10 out of 10, hell raineth upon thee, 'ultimate blasters' that have me pleading with God (and I'm not religious) signaling the end. Sorry..I'm smiling and laughing, I think, because misery loves company. It's so nice to have people that understand this "thing" So, same as you, I had a real (two actually) blasters, which told me, that's it, I can ween off the verap. This is my first time trying verapomil. Well the one last night after sleepng 4 nights with no attacks...that's what's concerning. Also worth noting--- I took melatonin last night, 1st night in 4 I like the suggestion of wriiting down possible triggers etc. I have been taking note of attack times start and end. First time ever, because traditionally, I didn't need to---if I was 11:01 pm, it was 11:01 Pm til I was done, apart from the final blasters, which I could never ever get away from.....it's the weirdest thing---i can never get away with no blasters at the end...If I OD'd on pain killer, like rizotriptan, timing it perfectly.....the devil would say-- "nuh-uh boy, I'ma hit you at 3am then.....no free rides asshole." Thank you three for the comments and valuable information! I'm going to try the Vitamin D3. Have not tried O2 yet, and definitely I normally stay away from energy drinks.....but perhaps not anymore. But my attacks, the worst ones anyway, come and crack me one after I'm sleeping......however, all of you know that there are worse things than being jacked up on energy at 2am....ummm, like for instance---being tortured behind your eyeball What a messed up deal we got eh folks? I'll say it again though, it is nice to be among people that know exactly what it is, and I don't have to explain it to friends and family....only to hear- "Oh yeah, I get bad headaches at work too, it sucks kinda bad" ..yeah, sorry, you don't get it my friend

Hi Spida....sorry ya had to find us...excellent first post ....any experience with OXYGEN?....saved my sanity perhaps my life. advantage of being quick, side effect free, relatively inexpensive (compared to triptans), and more portable than many think. using an energy drink with 120 mg caffeine minimum and 1000 mg taurine minimum was especially helpful in making O2 more effective...sometimes on it's own. both O2 and energy drink used at first sign of a hit is critical.....the 2 oz 5-hr energy type very portable, quick to down and nunna the gross amount of sugar they put in these drinks to make palatable... ....verapamil was an extremely helpful med for me for many years until i too got tired of the side effects you describe. only the immediate release kind worked for me. 480 mg/day in divided doses for low cycle, 960+ in high cycle. tapering on and off is important but i never experienced any rebound effect either way. since my cycles were so frequent i just stayed on full time, tho i would have preferred to use only as needed. if you know when a cycle is over (experience and one ultimate blaster at the end told me) you can do the taper. ...pill form triptans were of no use to me and most clusterheads (unless you know your cycle well and can time use). for breakthroughs , zomig nasal spray (5 mg) worked better (minimal side effects, long term action) than Imitrex injections...tho i could get by with 2 mg drawn from vials (the 6 mg statdose typically prescribed is way too big a hammer)... ...many clusterheads have found relief with the vitamin D3 regimen....definitely look into that... best jonathan

What @xBoss said! And @SpidaH you have plenty of keen observations! Yes to your choice of "attack" terminology in place of the insanely misleading "h***ache" word. You'll never catch me using that h word in this context. I can only imagine that staying on the verap a bit longer, not forever, could be called for, but that is one of the very few Cluster drugs I never had been prescribed high (enough) doses of, so I'll leave further commentary on that to others with more real experience. If you ever find yourself resorting to triptans for aborts again, you could find it useful to know that sumatriptan injections (which are actually pretty easy to self administer) can be orders of magnitude more effective, even at low doses, especially if the attack is caught at onset. Also there are faster acting sublingual versions of the riza, if you've actually been prescribed a pill form, right?

I live between attacks. I am chronic ch with little to no breaks...ever. been this way for 10 years. My hobbies include dabbling in psychedelic drugs and I live way off the grid on our family homestead in Montana. I am a retired professional musician and I love hanging around with my odd friends who are mostly societies rejects. I am married and have six kids. I am the ultimate mountain man stoner punk rock dude blessed with the beast. The beast is my friend cause he likes me to do shrooms to make both of us happy. I am happy just to participate in this brutal life us ch folks live. We are super heroes. Best to all. Psychedelic Brian reporting from the lp3 ranch.