New episode leading to preventative treatment

[Sub]

New episode started 2 weeks ago. Worst one since my onset in 2022. Attacks are painful and becoming more frequent. Yesterday was 4 in one day, with #2 being the worst of all time. Persistent shadow ever since.

My neurologist - who is on ClusterBuster’s recommended list - wants to start me on Verapamil and home Oxygen. My only treatment is sumatriptan nasal spray, but after yesterday I’m ready for injections. Very open to trying O2. 

I’m wary of Verapamil as my episodes are infrequent and I’m concerned about feeding into some kind of rebound cycle. I’ll discuss this with my neurologist, but wondering if anyone has first-hand experience to share regarding Verapamil usage for infrequent (1-3wk per yr) episodes. I don’t want to poke the bear that hibernates almost all year…

thank you for any insight, all.

[Shaun brearley]

Hi @Subreally good that you have a neuro that understands CH, that's the first step and normal that's one of the hardest, as for verapamil really works well for chronic and episodic,but not for everyone, biggest problem with varap is the dosage needed to be affective for CH, with it being a blood pressure med it can cause serious damage ie heart block, really need to get on O2 life changer for most CH, as for samatriptain injections, just be careful can lead you down a horrible dark rabbit hole that really hard to get out of, have a look at the D3 vit ragime, again works for loads of us and your shadows may well respond to ginger, 

[jon019]

....OXYGEN, an opti-mask nonrebreather mask  or direct tube, (other sourced demand valves the Cadillac worth investigating) from clusterheadaches.com, a regulator of 15-25 lpm (Amazon), energy drink or strong caffeine drink (5-hr energy my fav, no sugar, more caffeine/taurine than most), hit that O2 the first sign of a hit, try various breathing techniques like hyperventilation, breathe and hold, slow breathing....or a combination....

...and please do listen to Shaun...he knows whereof he speaks....suma and other triptans should only be used as abort of last resort. the near instant relief is so enticing it can lead down a rabbit hole of hit/abort/rebound....rinse, repeat and ride the agony train...

best

jon

Edited Tuesday at 10:53 PM by jon019

[FunTimes]

Agreeing with both above! I was put on Verapamil at the start of my cluster journey. Wish I never started it to be honest. I have had no issues with my heart or anything like that but it did mess with the feeling in my legs when I was up at around 1040 mg a day. I have slowly tried to take myself off of the stuff and am now down to 120 one time a day. They say that that does nothing for clusters but I can tell for sure that s not true. I have cut that last dose out and was clean of all verap for about 5 days before I started getting my ass handed to me in a big way and jumped back on it. And because I love to torcher myself I have done this a few times with the same results. When I was new to the cluster game I did not know anything about them at all and like everyone else dealt with it thinking it was a toothache or something. I  would get hit ere and there but nothing consistent. I started the Verapamil and an now chronic. I am not saying that is what made me chronic (my wife may say different) but it has been no lookin back since. 

Oxygen will be your best friend! 5hr drinks are your side hustle go to that you will tend to keep in your pocket at all times, Vitamin D helps a bunch of people and I feel does bring the pain down a few notches on that kip scale. Busting is not for everyone but definitely read up on it and not in the micro feel good about my life types, you need the cluster type who are trying to achieve a pain free life. Triptans are handy to have around for when you get stuck in a bad place and need that quick relief, and injection is the way to go for that.   

Just my 2 cents, I am not a doctor, this is just my experience. We are all different and you will need to tweak it as you go but the people on this site are pro's. 

[CHfather]

yes, get oxygen.  yes, consider busting preventively during the year.  definitely start on the D3 regimen, which will be as effective preventively (for future cycles) as the verap.

just a few more words on the verapamil.  first, it takes some weeks to get into your system, so if you can realistically anticipate a one-to-three-week cycle, there would seem to be no point, or very little point. prednisone is sometimes used as a "bridge" to quell the pain while the verap is taking effect. there are things to be said against prednisone, and using it more than once a year is strongly discouraged, but it could be considered, i would think, for cycles so short. except, as you say, why risk poking the bear.

(also, verap dosage has to start pretty low, to make sure there are no issues, and then it should be monitored as it is increased.  in such a very short cycle, it is very unlikely to help, and you don't want to be on it year-round in your current situation.)

 

[jon019]

5 hours ago, FunTimes said:

Oxygen will be your best friend! 5hr drinks are your side hustle go to that you will tend to keep in your pocket at all times, Vitamin D helps a bunch of people and I feel does bring the pain down a few notches on that kip scale. Busting is not for everyone but definitely read up on it and not in the micro feel good about my life types, you need the cluster type who are trying to achieve a pain free life. Triptans are handy to have around for when you get stuck in a bad place and need that quick relief, and injection is the way to go for that. 

 

[Sub]

5 hours ago, FunTimes said:

Agreeing with both above! I was put on Verapamil at the start of my cluster journey. Wish I never started it to be honest. I have had no issues with my heart or anything like that but it did mess with the feeling in my legs when I was up at around 1040 mg a day. I have slowly tried to take myself off of the stuff and am now down to 120 one time a day. They say that that does nothing for clusters but I can tell for sure that s not true. I have cut that last dose out and was clean of all verap for about 5 days before I started getting my ass handed to me in a big way and jumped back on it. And because I love to torcher myself I have done this a few times with the same results. When I was new to the cluster game I did not know anything about them at all and like everyone else dealt with it thinking it was a toothache or something. I  would get hit ere and there but nothing consistent. I started the Verapamil and an now chronic. I am not saying that is what made me chronic (my wife may say different) but it has been no lookin back since. 

Oxygen will be your best friend! 5hr drinks are your side hustle go to that you will tend to keep in your pocket at all times, Vitamin D helps a bunch of people and I feel does bring the pain down a few notches on that kip scale. Busting is not for everyone but definitely read up on it and not in the micro feel good about my life types, you need the cluster type who are trying to achieve a pain free life. Triptans are handy to have around for when you get stuck in a bad place and need that quick relief, and injection is the way to go for that.   

Just my 2 cents, I am not a doctor, this is just my experience. We are all different and you will need to tweak it as you go but the people on this site are pro's. 

Thank you everyone for the insight. I’ve read it all and am very grateful. Oxygen delivery is tomorrow, cluster equipment and all. Here in New England, my access to medical resources is fortunate at times. 

My neurologist confirmed I should only be on the verapamil during and while leaving the cycle. Direction is to start at 40mg and raise to 80mg if side effects aren’t bad; they didn’t mention doses beyond 80mg. I didn’t realize it reaches 1g+ for some people!

Everyone is different so there’s no right answer, but I’m curious if you feel the drawbacks of verapamil are curbed at lower doses. No experience or knowledge about it yet.

thanks again all!