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POSSIBLE FIX

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(BOTTOM PARAGRAPH IF YOU DON'T WANNA HEAR MY STORY)

 

Hello again!

I'm not gonna start by asking how you're all doing because if you are reading this, then clearly you are having a really shitty time. 

I am on my 11th year of CH and I've finally had a breakthrough. I am not sure if any of you have heard of this medication so I'd like to tell you a bit about it.It's called "Verapimil" which is a calcium blocker, and it has completely changed my life.

At the beginning of my CHP I was awaiting an appointment with a neurologist. I've been through the MRI and to several doctors and had zero success with dealing with these headaches. I was combating the headaches with my usual concoction of illegal drugs. Something I'm not overly fond of doing but resorted to it because if was the only thing that would put a dent in the demon. I was depressed (as i get) and very tired from not being able to have sound sleeps. 

I finally got into my neurologist. He was the tits. The guy is like the front runner neuro in my area and deals with several people up the valley that deal with this bullshit. He told me there are solutions. I didn't believe him but what the hell am I gonna do? Say no? I filled his prescriptions and went my not so merry way. The other Two drugs in toe were Indomethacin  and liquid lydocain (I was a guinea pig for nasal usage)

The Verapamil has a 1-2 week stacking onset (1 week for me) at which time you're to use the indomethacin and lydocain to treat accute attacks. The lydocain was a complete fail. The Indomethacin worked pretty well however it left me pretty foggy. takes like 15-20 min to set in so you're gonna need to be pretty on the ball as soon as you feel that aura. HOWEVER;  the verapimil I have been using 3 times a day since November 1st, it's now February 28th and I am really pleased to report that I have only been victim to a couple of auras here or there. Absolutely zero fucking cluster attacks since the meds kicked in. I am a normal man again. I haven't felt this since I was in my early 20's. 

Anyways guys, I hadn't seen anyone mention Verapamil in any of my searching so I wanted to share this in hopes that it may be able to help some of you. 

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what is the dose of the Verap that your taking now? Alot of people on this site have tried and need very large doses for any relief. Also have you tried oxygen to abort your attacks? High flow oxygen at 25lps with the proper non re-breather mask know as the cluster mask can abort a cluster in as little as 5 minutes. if you add a 5hr energy drink to the first sign of pain you can maybe get off the other meds that you are using to abort.   

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I've tried everything else. Oxygen wasnt an option because I'm a theatre actor and musician. I needed something to keep the attacks away. Triptans just zonked me out. 

I'd never heard of Verapimil before but for whatever reason it solved things for me. 80mg 3 times a day. I was really hoping to drop a cure bomb on everyone. That sucks. Sorry guys.

 

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Hello e3rr,

Verapamil is THE first line preventive treatment for CH. Similar to what propanolol is for migraine. Verapamil is a calcium channel blocker and propanolol is a beta blocker. You probably did not find any info on this forum about it as it is so normal here that people not talk about it anymore. Almost everybody takes it or have at least tried it.

Anyway, what is really positive is that a low doses of 240 mg worked for you and that is important information. Many have to go much higher (up to 960 mg) and getting all kind of weird side-effects such as swollen ankles, anomalies in their heart rhythm etc. Previous year I have been on 240 mg for a month but it did nothing. So the doses was probably too low for me.

All the best !

siegfried

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@Siegfried Really hey? I have noticed a little swelling in the wrists and some pain but I will certainly take that over headaches any day of the week. 

I truly am bummed that I wasn't able to shed some light and help everyone. He said it doesn't work for everybody but most of the patients this fella treats have had some decent results with the Verapamil. Hope they figure something else out. I was looking into gamma knife radiology. It's used for trigeminal neuralgia. It is prone to some fairly serious side effects. 

Take care my friend.

 

Joel

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I was on Verapamil 240mg 3 times a day but it was slow release and made my feet look like balloons. I have changed over to the fast release version and worked my way down to 120 once a day. I read on here that the fast acting works better for most so I figured I would give it a try so I had to change doctors to one who knew what I was looking for and what do you know.. people here really do know what they are talking about. 

This site is great. you will find all kinds of new information here that will help your life go just a little better every day. 

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@Freud Just curious if you adhere to any diet restrictions and a sleep schedule? Once I got on the Verapamil I ceased any and all forms of smoking, drinking and drug use. I also kept my diet extremely clean. Only prepared fresh food. I also kept my sleep schedule very strict. Never deviating from the time I go to sleep.

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What little freedoms in life I’m left with after the CHs I enjoy. I happen to eat a diversified diet. I smoke, and use medical marajauana is that a drug?  I use mushrooms and LSD to treat my clusters do they count as drugs?

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@Freud Are you chronic? I get them every winter for 3 months. I was also using mushrooms to keep them quiet for years. Cocaine for bad attacks. Cocaine worked like an absolute charm. Stopped them dead in their tracks. But then I was on Cocaine which is kind of a drag after a while. 

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e3r

I have not changed any diet for verap. I eat like crap most of the time and smoke a pack of cigars a day. I can not drink beer anymore because that is a trigger but I can sometimes pull off a whiskey drinking day. Interesting enough, when I tie a load on with Whiskey I tend to get 3 days pain free after that.

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That’s interesting funtimes, didn’t picture the cigars either. 

 

E3r that’s one hell of a way to attack them. I’m scared of coke so I don’t touch the stuff. I’m chronic, long story short I was on another blocking med that takes a long time to get out of your system but I did achieve a 2 month break with mm when I was in monthly and not quarterly injections. 

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I just mean Diet restrictions for CH in general. Smokes trigger them, chocolate, any alcohol sends me into a savage attack. 

I hear you about being afraid of coke. It's really bad for you lol. But I got to a point where I didn't give a shit. I would have happily broken a finger a day to keep them away.

@FunTimes have you tried stopping cigs during your cluster? I quit completely this year. I found they weren't as severe.

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My story is like many of yours. Episodic, 12 years, didn’t know what I had until the past 3 years.  Many false positives only to realize my cycle had ended. Just wanted to share what has worked; I think. Verapamil 80 mg three times daily, Topamax 25 mg twice daily. 12 mg melatonin (over the counter) before bed. For many years I took the same prescriptions but in lower doses and suffered through my cycle. Raising the verapamil finally seems to have worked. Many will need a higher dose. Give it time to work. The effects are not instant. Sumatriptan injections (6mg) for relief before the preventatives have had time to become effective. I began “splitting doses” when I couldn’t get enough injections to keep up with my headaches. There are videos on how to get to the syringe inside the epi-style injector. 3mg still gets rid of my pain- giving me 2 for 1 on each injection. I’ve never tried oxygen and since the Sumatriptan works so well with my “system” I doubt I will unless things change.

I know the same stuff doesn’t work for everyone but I struggled for 11 years with no relief until now.  I wish I’d known. Hopefully this helps someone. 

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EggMan

You should look into the oxygen, it can abort your attack in as little as 5 minutes once you get the hang of it and you are not taking any sumatriptan. I was in the same boat as you at one time maxing out on all flavors of sumatriptan, the shots and in pill form. Not only did then make me feel all drained and tiered they cost me a lot of money. I had a struggle at first getting a good vendor to work with getting oxygen but now that I found one things are much better for me. I still keep the triptans for when the shit hits the fan but that is maybe only once every other month if even that. 

At this point I take 120mg of verapamil once a day do the D3 vitamins and bust on a set schedule. I keep a 5hr energy drink or something like that with me at all times and drink that on my way to the oxygen tank to kill off any attacks I have now. I still get one or 2 a day but that is much better then the 6 to 10 I was up to only fighting with triptans. Dont get me wrong, Sumatriptan does work and it never to far out of reach for me but the oxygen is better for your body and does not cause any rebound attacks like the triptans can sometimes do. 

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Sadly Verapamil while likely one of the most prescribed drugs for CH, has terrible efficacy.  Through data compilation of Dr's Halpern (etc) Verapamil has shown to have about a 5 percent efficacy.  I'd suspect diet and a simple termination of peoples cycles are more the cause and not the Verapamil itself.  The first year I tried it, I thought it was a miracle drug.  The second year it didn't work at all and instead It gave me heart palpitations (PVC's). 

Glad it's doing good for you. :)

J

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All too often you think you’ve found a “cure.”  One year later you try the same things only to find they don’t work. (Cycle must have been over the last time). “FunTimes”, what are the D3 vitamins you speak of?  Thanks. 

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EggMan

Search for a user on here named Batch, he is the king/inventor of the vitamin D3 regimin. They are all OTC vitamins you can get online of in local drug stores here in the US. 

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