An Introduction and a Thank you

[SpidaH]

Hey folks, 

I just joined, so I first want to say- sorry if this is redundant to the veterans, as I havent read through all the threads here, yet. 

Second, I'm not sure the etiquette here, but I tend to swear and use harsh language, so sorry for that, in advance. 

 

Also, would like to thank the founder of Cluster Busters. Mainly, for bringing some awareness to the world, for creating a (I don't like the term, cuz it makes me feel I've got a problem hehe) a support group, for people that go through the same thing that made me feel like a "freak", that I hid from everyone, for so long.

I'm a 47 year old man, living in Southern Manitoba, Canada (about 40 mins south of Winnipeg). I'm a smoker, a joker, but not a midnight toker....anymore. (quit that when i was in my 20's). I'm an avid fisherman, I have amazing family, friends and a supportive caring sexy woman to go through the rest of my life with, God willing. I'm not a real religious man, but I often think so much beauty, awe and wonder, simply could not have happened "by accident". 

 

I have had episodic Cluster Headaches since about age 24. At first--I thought I had a cavity/toothache, affecting that nasty little bastard nerve we all have come to get familiar with. ...then as the next cluster of attacks (I don't call them headaches, because I feel it's misleading the public), I was convinced I was dieing of a brain tumor. 

Being a stubborn male....I avoided medical help, and thought I'd just die like a man, if that was how I was gonna go. (stupid, I know). Then I snapped out of it and sought out medical attention. It was the typical set of mis-diagnosis, running about 5 yrs til I got a doc that was aware of CH.

 

Fast forward to shortly after proposing to my fiance, on August 3rd, 2021----the beginning of my personal torture interrogator showed up, after a 3 year hiatus from hell. 

I scrambled to get some old prescriptions filled--- Verapomil and Rizotriptan. 

The rizotriptan does reduce the torture, from a 10 of 10 pain, to a 4 of 10, IF I TAKE IT IMMEDIATELY at the very start.....however, like most---my torture iterrogator shows up roughly at the first onset of my deepest sleep, so by the time I wake up from pain, it's already at 3 or 4.....and the Rizotriptan has to climb a steep hill to catch up, only making it to where it's at an 8 of 10

 

So I was at the end of the cluster period, last Wed, when i had my last one, then went 4 nights, pain free! Hazzahhhhhh!!! I'm done!!!! .....or so I thought..  I weened myself off the verapomil, from 3 pills daily, to 1, yesterday....well hello you sick sonofabotch! Woke up last night with a 4 of 10---rizo down the hatch...you folks know the rest---wait for relief...pace.....hold my head.....shake my fist at my own brain....curse human existence.....wait...pace....stomach bloating--sign of rizo coming into to help....GI tract protesting the drug...too bad GI tract, there's a bigger fight, deal with it...pacing waiting.....annnd relief. 

 

So-- to anyone that has used verapomil---- should I be concerned about stopping, for fear of rebound cluster period??! This scares the shit out of me--the thought that the drug that seems to have turned off the attack cluster period (usually 6 weeks for me, which is about now)...could actually mess up my clock, to spur on the beginning of a "new" 6 weeks of battling a ####ing demon?

 

How long after you feel verapomil has aborted an episode, do you stop taking it? 

I don't want to take verapomil forever...it messes me up bit--tired, constipated, dizzy, unmotivated

 

Any feedback would be phenomenal

For anyone new to this condition--- stay positive. I know it's tough when you're in the thick of it and you're on a total of 40 hours of sleep deprivation over the last 5 weeks...but stay positive. Know this--- everything happens for a reason. I believe I suffer from this, so I can appreciate everything that's good in life, just that much more, once hell has passed. And we only visit hell......so don't do anything stupid that may put you there permanently. Get help, be kind (I know it's tough when you're in the shit times) but be kind. Most people don't understand what this is, so don't hold it against them. It's not an easy thing to imagine--- a hot poker searing and pushing your eye out, when it's labelled a "headache". So help them understand, be patient and know it will pass. 

 

Cheers everyone, and thanks for listening. 

 

 

[xBoss]

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 

[Bejeeber]

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?

 

 

 

[jon019]

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

Edited September 13, 2021 by jon019

[SpidaH]

Thanks Scott and Bejeeber

7 minutes ago, jon019 said:

if you know when a cycle is over (experience and one ultimate blaster at the end told me) you can do the taper. 

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 

[BoscoPiko]

5 hours ago, SpidaH said:

Hey folks, 

I just joined, so I first want to say- sorry if this is redundant to the veterans, as I havent read through all the threads here, yet. 

Second, I'm not sure the etiquette here, but I tend to swear and use harsh language, so sorry for that, in advance. 

 

Also, would like to thank the founder of Cluster Busters. Mainly, for bringing some awareness to the world, for creating a (I don't like the term, cuz it makes me feel I've got a problem hehe) a support group, for people that go through the same thing that made me feel like a "freak", that I hid from everyone, for so long.

I'm a 47 year old man, living in Southern Manitoba, Canada (about 40 mins south of Winnipeg). I'm a smoker, a joker, but not a midnight toker....anymore. (quit that when i was in my 20's). I'm an avid fisherman, I have amazing family, friends and a supportive caring sexy woman to go through the rest of my life with, God willing. I'm not a real religious man, but I often think so much beauty, awe and wonder, simply could not have happened "by accident". 

 

I have had episodic Cluster Headaches since about age 24. At first--I thought I had a cavity/toothache, affecting that nasty little bastard nerve we all have come to get familiar with. ...then as the next cluster of attacks (I don't call them headaches, because I feel it's misleading the public), I was convinced I was dieing of a brain tumor. 

Being a stubborn male....I avoided medical help, and thought I'd just die like a man, if that was how I was gonna go. (stupid, I know). Then I snapped out of it and sought out medical attention. It was the typical set of mis-diagnosis, running about 5 yrs til I got a doc that was aware of CH.

 

Fast forward to shortly after proposing to my fiance, on August 3rd, 2021----the beginning of my personal torture interrogator showed up, after a 3 year hiatus from hell. 

I scrambled to get some old prescriptions filled--- Verapomil and Rizotriptan. 

The rizotriptan does reduce the torture, from a 10 of 10 pain, to a 4 of 10, IF I TAKE IT IMMEDIATELY at the very start.....however, like most---my torture iterrogator shows up roughly at the first onset of my deepest sleep, so by the time I wake up from pain, it's already at 3 or 4.....and the Rizotriptan has to climb a steep hill to catch up, only making it to where it's at an 8 of 10

 

So I was at the end of the cluster period, last Wed, when i had my last one, then went 4 nights, pain free! Hazzahhhhhh!!! I'm done!!!! .....or so I thought..  I weened myself off the verapomil, from 3 pills daily, to 1, yesterday....well hello you sick sonofabotch! Woke up last night with a 4 of 10---rizo down the hatch...you folks know the rest---wait for relief...pace.....hold my head.....shake my fist at my own brain....curse human existence.....wait...pace....stomach bloating--sign of rizo coming into to help....GI tract protesting the drug...too bad GI tract, there's a bigger fight, deal with it...pacing waiting.....annnd relief. 

 

So-- to anyone that has used verapomil---- should I be concerned about stopping, for fear of rebound cluster period??! This scares the shit out of me--the thought that the drug that seems to have turned off the attack cluster period (usually 6 weeks for me, which is about now)...could actually mess up my clock, to spur on the beginning of a "new" 6 weeks of battling a ####ing demon?

 

How long after you feel verapomil has aborted an episode, do you stop taking it? 

I don't want to take verapomil forever...it messes me up bit--tired, constipated, dizzy, unmotivated

 

Any feedback would be phenomenal

For anyone new to this condition--- stay positive. I know it's tough when you're in the thick of it and you're on a total of 40 hours of sleep deprivation over the last 5 weeks...but stay positive. Know this--- everything happens for a reason. I believe I suffer from this, so I can appreciate everything that's good in life, just that much more, once hell has passed. And we only visit hell......so don't do anything stupid that may put you there permanently. Get help, be kind (I know it's tough when you're in the shit times) but be kind. Most people don't understand what this is, so don't hold it against them. It's not an easy thing to imagine--- a hot poker searing and pushing your eye out, when it's labelled a "headache". So help them understand, be patient and know it will pass. 

 

Cheers everyone, and thanks for listening. 

 

 

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!!!

[jon019]

 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....

 

Edited September 14, 2021 by jon019

[SpidaH]

11 hours ago, jon019 said:

there are those who believe extended use causes ECH to turn CCH.

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.  

[Bejeeber]

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!

 

 

 

[CHfather]

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/

 

 

[Racer1_NC]

13 hours ago, jon019 said:

 there are those who believe extended use causes ECH to turn CCH. 

 

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

[SpidaH]

You folks, are awesome. 

I mean it. 

 

**An update---last night, no boomer...not even a twinge... just the "head in a vise" feeling I've had from verap, and my neck pain (from rear ender car accident that's always there) getting worse. 

I went back to 3 verap a day. 

 

Convinced, it's what halted my cycle. I had 4 nights with no blasters. Weened off verap at one a day---boomer, next day, back to 3/day, slept like a drunk baby 

 

Not wanting long-term verap, but I'm going 2 weeks, starting yesterday, win or lose. 

 

If I stop the verap and the bastard returns (it shouldn't, my cycles are typically not longer than 10 weeks, I'm on my 7th, avg cycle is 6 weeks), then I'm gonna dose the fungus.....that i may or may not have acquired. As well as try the many options mentioned here, by you wonderfully helpful folks! 

 

I've read the banner at the top, but am wondering--- how do folks start? 1/8th of a gram? ...1/16th..?  

I should say--I have a history with the zooms, back in my 20's pre-CH, recreational....very, recreational. The FunGuy and I got along really well for a time......so stating that--I'm not afraid of the mushroom, but i also don't want to trip. I had my trips long ago, been there, done it, got enlightened, enjoyed it, but now that I'm a responsible adult, with some amount of anxiety that comes with providing for a family and whatnot...I don't wanna trip out

 

PS--- any males that have taken verapamil.......is it me, or is it like a low-grade cialus/viagra? ....it's kinda one side effect my better half might be enjoying ...but maybe it's in my head...no pun intended. Might be too much information...but it seems like the verapamil is making me horny like a jackrabbit lol 

[jon019]

10 hours ago, SpidaH said:

 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--- 

To quote myself, cuz i'm tired and it's easier than rewriting:

"My greatest fear over  23 yrs of episodic was that it would become chronic. I was obsessed with the thought. Used to dismiss comments that chronics preferred it to episodic.... thought they were nuts. Then it happened.... and the reality was FAR less than the fear of the unknown had led me to believe.

Hits were generally lighter, aborts worked better, triggers were reduced or went away, depression lessened. It still aint no damn fun...but if ya got the right attitude, a plan and the right tools..... it's manageable."

now....re meds:

...this is an alternative medicine site, so i always think long and hard before sharing my experiences with western pharma....but it's what i know...and frankly, i'm an opinionated sumburger....

...no personal experience with the alternative methods and substances discussed here...only that i whole heartedly endorse, follow with passion and glee the success stories, applaud the ongoing research, and am delighted by the increasing societal acceptance. were i just starting out on this journey today, i would bag all the 20+ meds tried (except for OXYGEN!!!) .... avoid all the woeful lack of western medical knowledge re headache ...and CH especially...  and go the Clusterbusters route!  it's too late for me, but i would encourage you to explore....

 

6 hours ago, SpidaH said:

PS--- any males that have taken verapamil.......is it me, or is it like a low-grade cialus/viagra? ....it's kinda one side effect my better half might be enjoying ...but maybe it's in my head...no pun intended. Might be too much information...but it seems like the verapamil is making me horny like a jackrabbit lol 

 ...interesting...one of the most frequently reported and distressing side effects of verapamil in males is impotence. same area of "action" ...so consider yourself fortunate....

[BoscoPiko]

Ok... I feel like I'm on the shrooms after this LOL. Guess I suppose I'm the simpleton in the room here "Hi" I never ever want to go chronic I have never read anything about being chronic being easier to manage or the hits hurting less? However I am a new hell dweller. I suppose in telling you that I have also never heard of tapering off of the verapamil will show as much or I could blame that on my Neuro for never filling me in on that part as well as telling me every time I have an appointment "sorry these things are still bothering you" (as if they are going to magically go away) I also liked his statement that they are sometimes lunar? Funny that the verap is making your member stand at attention as I have to monitor my heart rate because it dips mighty low sometimes who knew.. Maybe I'll plug my husbands nose tonight and see what happens..JK... (Not shrooming just an odd sense of humor).. You did mention a beautiful wife!! Go get her buddy!!! Wishing you no pain!!!!!   

[SpidaH]

Last night again--- pain free! 

 

I think (hope) I am done for a couple years. 

 

I consider myself incredibly lucky in a lot of ways. One is knowing/hoping my shadows will be gone for a couple years. If I disappear for a couple years, just know you all have helped a ton, even just by knowing there are people that understand this thing, and there are people helping people and doing incredible thngs  making traction toward a brighter future. 

 

And isn't Batch an incredible man! Holy! It's like he was put on this earth to help all of us. Just incredible. 

 

Wishing all of you peace and serenity and all the joy and happiness possible. Goodness knows you've all earned it! 

[xBoss]

3 hours ago, SpidaH said:

Last night again--- pain free! 

 

I think (hope) I am done for a couple years. 

 

I consider myself incredibly lucky in a lot of ways. One is knowing/hoping my shadows will be gone for a couple years. If I disappear for a couple years, just know you all have helped a ton, even just by knowing there are people that understand this thing, and there are people helping people and doing incredible thngs  making traction toward a brighter future. 

 

And isn't Batch an incredible man! Holy! It's like he was put on this earth to help all of us. Just incredible. 

 

Wishing all of you peace and serenity and all the joy and happiness possible. Goodness knows you've all earned it! 

Nice, hope it works great for you. Keep us posted!

[Shaun brearley]

Good luck keep us updated 

[SpidaH]

Thanks guys.

 

Pain free again last night. 

 

Still fearing a "slap back" when i come off verap, as I've got a constant hint of shadow....