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AndiD

Feel like I've finally got these Clusters mastered

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Hi all - just wanted to post a little positivity as I feel like I’m really on top of my Clusters at the moment and wanted to pass on my success (or what we could call a success with a condition that has no cure!)

 

39 years old - Episodic CH since I was about 21. Really struggled through my 30s with some very long episodes and not managing the pain very well.

 

4 years ago today I was in the middle of a mega-bout - 3 months in and crying on the floor asking my wife to kill me. I was splitting Imigran injections to have 4 of a day, nasal sprays, 6-7 melatonin gels every night and getting through 2 big bottles of oxygen a week. I was a mess and CH had just taken over my life. Tried magic mushrooms which unfortunately was an awful experience as well.

 

Finally went to see a CH specialist doc who turned things around for me, weaned me off the Imigran injections and sprays and put me on verapamil. His opinion is that there’s a dose for verapamil that will work for every CH patient, but of course some people can’t take a high enough dose due to health problems / blood pressure etc. Now whenever I feel a new cluster period coming on I start straight on with 560mg verapamil a day (taken in 4 doses over the day), and I’m allowed to up that to 960 if it’s not quite working. I also take 4000iu vitamin D throughout the year now as a matter of course (thanks Batch).

 

Right now I’m nearly 3 months into this season’s bout and my days are completely pain free. At night I’m still being woken by 1 or 2 clusters, but they’re a 3 or 4 pain max and I just roll over to my oxygen, 10mins sucking on the o2 and I’m straight back to sleep.

 

Now I always make sure to have my ammunition tucked away safely at home ready to grab whenever I feel a new season starting:

 

  • 2 week big-dose Predinsolone steroid dose on a taper - these are to have while the verapamil starts to work as it can take up to 2 weeks. I think the steroids are actual magic as they work within 24 hours and give you a week pain free - you can even drink alcohol, but ideally I think people are only supposed to use once or twice a year due to long term effects.
  • Lots of packs of verapamil stocked piled during my none-CH periods.
  • 2 full Oxygen cylinders in the garage

 

Fortunately I’m in the UK so verapamil prescription costs me £9 for 2 weeks worth and Oxygen tanks are just delivered for free whenever I call up and ask. Thank you NHS .

 

It’s really empowering to feel like you’re winning the fight, and I’m sure I’ll have bad clusters again at some point, but right now I’ve got my defences all shored up and the enemy can’t get through.

 

TLDR:

 

- If you’ve not tried high dose (500mg +) verapamil and you’re in relatively good health, please speak to your doc about it. Remember it can take 2 weeks to feel the effects, and you’ll feel shitty, dizzy and a bit poorly for a few days. It will pass.

- Oxygen is a basic necessity and every CH sufferer should have this.

- Try and stay away from Sumatriptan if you can - it’s instant relief but with long time problems.

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Omg! Reading posts like this makes me SO HAPPY. I just started verapamil recently at a fairly low dose, my doc was open to raising the dose if needed. I’m almost certain your intense cycle was from over use of Imitrex. Some days I just feel so lost and frustrated. I love my life and I miss the life I had before these. I think it’s just so new for me still. Can’t wait to master my headaches! I hope you keep having success 

Kat 

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...very nice post...thank you for sharing.....attitude, plan, TOOLS!

....my neuro had same thoughts on verapamil...was over 1000 mg at times....

....have you considered continuing at a  lower dose in between cycles or a ramp up for expected cycle start (if you know your cycles well)... it is possible to titrate dosage in between so you don't have the yoyo of stop and start and the need for prednisolone (IV/taper?) is reduced. you really want to avoid the steroids as much as possible.... as even 1-2 tapers/yr can have significant negative effects (and sometimes don't even work in my experience)...

....Zomig NS as effective for me as Imi with far fewer negatives....abort of last resort if energy drinks + O2 didna work...

...OXYGEN   :wub::wub::wub:...........

best

jonathan

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I’m actually having crazy side effects to verapamil. I’m having stomach pains like what come with diarrhea but I’m constipated so nothing is happening :(Verapmil is working so I don’t want to give up on it 

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@kat_92     hmmmm  I've had similar taking verap (or not)....bad combo and docs couldn't figure.....but when taking verapamil (which is really concrete mix) LOTSA water and fiber (metamucil if diet deficient) very helpful.............

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I’m actually having crazy side effects to verapamil. I’m having stomach pains like what come with diarrhea but I’m constipated so nothing is happening :(Verapmil is working so I don’t want to give up on it 

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@AndiD i am curious are you on verapamil immediate release or verapamil ER? I am on verapamil ER 320 mg a day and my headaches are ramping up. I called for an emergency appointment with my neurologist on the 8th to see if they can switch me to immediate release. I’ve heard it works better. I’ve been on it for a month already so it should be working well;/ 

Kat

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@kat_92 - it's the normal immediate release I'm on - 4x40mg tablets in the morning, 3x at 1pm, 3x at 6pm and 4x again just before bed so 560 dosage per day. Like I said the night hits still come, but much less painful than without and sorted quickly with oxygen.

Over the years I've previously given up on verapamil because it hadn't worked, but I'd never given it the 2 weeks to bed in, and had the right dosage. Fingers crossed it continues to be manageable like this. Good luck!

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So great to read about your success @AndiD

Wondering if it was tricky to get the oxygen suppliers to let you keep a couple bottles in storage when you're out of cycle? I'm London based and my supplier is Air Liquide, not really sure what to do about it when my cycle is up, would assume they'd be chasing me for them back after a while, but I wouldn't mind keeping one back just in case. 

Best of luck staying on top of it!

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When I start typing I often feel like I am spoiling something when the vibe in the conversation has been good before I entered. I personally would recommend Verapamil to no one. I have been actively (daily) working in the online communities for 10 years now. I don't know anyone for whom verapamil would have worked for 10, there are few who can stay on it for 5 years. Even if the response stays there are cardiac problems, detectable or not detectable. I would say if you are in relatively good health and have not tried verapamil, please keep it that way. I was on 480mg almost for a decade, 720mg for years and in the end 960mg and almost 1200mg. I regret every pill of it. I too started getting relief on my cycles, especially night hits. For me it was Vitamin D I was taking alongside verapamil. But I am not this against it because of my personal experience but because I admin finnish patient community and there is nothing in patient experiences - especially in long term - that would look good for verapamil. And when high dose patients get problems it's too late.

Steroids (prednisolone) are more dangerous than verapamil. They abort the first few cycles and doctors have limits on the dosages you can get as tablets. When the highest dosage steroid course does not abort a cycle anymore, usually the steroids have altered your cluster headache to hell of a lot worse it was before them. At this point some get steroids as IV. Again, not against these either based on my own experience (though I have lots) but they create nothing but tragedy if you follow same set of patients for 10 years.

Oxygen, Anti-inflammatory regimen and busting are giving nothing but great results though, in long term, in our community.

Edited by Tony Only
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On 6/26/2020 at 5:31 AM, kat_92 said:

I’m actually having crazy side effects to verapamil. I’m having stomach pains like what come with diarrhea but I’m constipated so nothing is happening :(Verapmil is working so I don’t want to give up on it 

Pay attention you are able to get the same amount of poop out (sorry for the language) you did before verapamil - there are probably lot of options for help in your pharmacy. Depending a bit of your diet but long term created constipation can lead to diverticulitis ("bubbles" in your bowels manifest as pain) - familiar to us in the verapamil family - and that's a whole new problem of it's own. In Finland there's a great product called "Vi-Siblin" (Google "Ispagula Psyllium") which usually helps verapamil users even when more ordinary products do not.

Edited by Tony Only
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