Hi all, this is kind of a short question and is geared mostly at the guys and perhaps any wives/girlfriends/partners of men who might have some thought on this matter.

I'm on a pretty high dose of Calan (720mg/day), and it took a long time to get to this point and to get my headaches (more) under control. We're still really not sure if "cluster headaches" are an apt diagnosis or not, but my specialist isn't as concerned about it since the Calan is mostly working... just not totally. I am, however, having a pretty frustrating side effect: since reaching about 480mg of Calan I've been having ED problems. I kind of lost track of exactly when the ED problems began occurring because I am in a long distance relationship and don't need to perform as frequently as I might, but that makes it even more difficult because there are so few times I have the chance to be intimate with my partner.

I just turned 21 and there is no other reason I should be having these issues based on other facets of my health. My doctor is aware of the problem and thinks it's very likely it's the Calan but doesn't really know what to do about it right now. ED medications can definitely cause headaches, so that's not really a good solution even though I'd only have to take them one weekend a month or less. Right now he just has me decreasing the Calan to 480mg a day (2 tabs in AM, then 1-1-2) for two days before my partner visits and then for the duration. This does not really work for me either, as my headaches tend to come back and it just requires a lot of abortive medications. I am someone who has had NO benefit from O2 even after doing absolutely everything recommended on this page and investing a decent amount of money in a set-up. It's no one's fault; it just doesn't work for me… but that means I have to be extra careful with how and when I treat attacks since if they occur, they always require medication.

It seems right now the Calan or something like it is one of my few remaining options. Suffice to say without attaching the list I have been through most of the medicinal and non-medicinal options for treatment without having surgery. Feel free to suggest a totally different medication if it's not widely used at all, but if it's conventional or 2nd (or 3rd or 4th course) treatment, chances are I've tried it.

Does anyone have ANY suggestions I can bring to my doctor? Someone suggested a Kudzu supplement in addition to the Calan (and cut back some on the latter), but I can't find where and I have no idea the dosing. Any other thoughts would be likewise appreciated… this is a very frustrating side effect for anyone, but especially somebody my age.

Thanks in advance,

Zac

Pretty common side effect.

I call verapamil (Calan) the anti-Viagra.

That's why I don't take it anymore. Life's too short, and so was I.

I don't disagree, but I can't have sex with attacks going on or in between 5-7 a day because I'm too physically and emotionally drained after so....

Truly hate to write this pal, but sounds like you're damned if you do and damned if you don't, many of us guys who take Verapamil have that common issue on high dosage such as yours and you just have to deal with this and the many other issues that impact CH so called life :(

Drug free options exist....

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No experience, but I bet if you asked people to PM you you might get a response.

Also consider the "alternative" route:

Clusterbusters.com

Verapamil had the same effect on me when I tried it in the 80's. :( I now use lithium as my prevent, at 1200 Mg a day blocks about 60-70% of my attacks.

Joe

The more we are the same...the more we are different. I take 480-1040 mg/dy...this has never been a problem....

Now then.....Flomax..... is a different story.......

Best,

Jon

Off to class but I wanted to respond quick before I left.

Ricardo, I own a number of those, but thank you very much. They're not really all that effective if you can't get a decent erection to begin with, plus if the fit isn't perfect (it never is... I have metal, elastic, plastic, and adjustable) and I'm really struggling I find the stress gets the better of me and things sort of "deflate," if I might be a bit crass. No better word. They do help sometimes though, so it's better than nothing.

Joe, there are a number of medications I might have been able to take but can't because I have a psychiatric history. I had such a violently bad reaction to Lithium that no one wants to put me anywhere near it. For a long time, it seemed the Clusterbuster method was really not a viable option because of my psychiatric past but the Verap has been becoming less and less effective and none of the abortives I have work anymore and I'm running out of options. I spoke to my psychiatrist about it and he obviously can't condone the Clusterbuster route as a medical professional but he did tell me that as I seem to have completely outgrown my mental instability (I am no longer on mood stabilizers either), he's not as concerned as he would have been say, 3 years ago. I'm going to do some research and see the minimum doses people have had success with... I know the information is all there.

Jon, lucky you. That's all I have to say  :-/

Ah, well. As I mentioned above the Verap is unfortunately becoming less and less effective anyway, so pretty soon between that and the fact it's wreaking havoc on my sex life I think I need to move on or take a break from it. Mostly because of the former, because why take it if it doesn't work? Of course, I don't know what my next option is after this.

Zac

I have not "busted" yet, I was a cop for 30 years so it was just too risky for me, but now that I'm retired I fully intend to try it the next cycle. I have several very close friends who have. The dosing is sub-hallucinogenic. It's certainly not a case of just chewing some shrooms and getting high. It requires a detoxing period from most meds, and then a fairly rigid schedule of dosing.

Spend some time on that board, there are some beautiful people there that will answer any questions you have and share their experiences. Good luck, would be nice to see you get a decent quality of life back.

Joe

Try this....o2 therapy...ive noticed it "extends the life" 1st thing in the morning...try it, you have everything to gain and well, um, nothing to lose at this point

Using both Lithium and Verap. has been useful for some.

Explore this publication. There may be some leads....

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In a PDF file.

wrote on Nov 11^th, 2011 at 9:22am:

Off to class but I wanted to respond quick before I left. Ricardo, I own a number of those, but thank you very much. They're not really all that effective if you can't get a decent erection to begin with, plus if the fit isn't perfect (it never is... I have metal, elastic, plastic, and adjustable) and I'm really struggling I find the stress gets the better of me and things sort of "deflate," if I might be a bit crass. No better word. They do help sometimes though, so it's better than nothing. Joe, there are a number of medications I might have been able to take but can't because I have a psychiatric history. I had such a violently bad reaction to Lithium that no one wants to put me anywhere near it. For a long time, it seemed the Clusterbuster method was really not a viable option because of my psychiatric past but the Verap has been becoming less and less effective and none of the abortives I have work anymore and I'm running out of options. I spoke to my psychiatrist about it and he obviously can't condone the Clusterbuster route as a medical professional but he did tell me that as I seem to have completely outgrown my mental instability (I am no longer on mood stabilizers either), he's not as concerned as he would have been say, 3 years ago. I'm going to do some research and see the minimum doses people have had success with... I know the information is all there. Jon, lucky you. That's all I have to say  :-/ Ah, well. As I mentioned above the Verap is unfortunately becoming less and less effective anyway, so pretty soon between that and the fact it's wreaking havoc on my sex life I think I need to move on or take a break from it. Mostly because of the former, because why take it if it doesn't work? Of course, I don't know what my next option is after this. Zac

Quit eating the narcotics and things might improve.

          Potter

Potter, I'd like to respectfully tell you that was misguided and not really helpful right now, especially since I didn't mention anything about narcotics in this thread. While I was prescribed percocet legitimately and necessarily in the past, I have not needed to take any narcotics (including in the ER) in almost two months, so I don't think that's the solution since I can't "quit eating them" anymore as I've already quit eating them in the first place. Thanks for the suggestion, though. If it were still the case it would have helped.