I am getting so frustrated... I go see my doctor on Tuesday, I was having issues with the dosage of Verapamil that I was taking....it was making me seriously ill...I mean, omg if I throw up one more time I will kill myself kill... I tell him, I can't tolerate the stuff... well, wait let me go back one step, by nature I run a low blood pressure, usually mid 70's to low 80s.. so you all know the Verapamil is usually given for blood pressure, high blood pressure... okay, so back to the problem, I go in I say Dr. M, I can't tolerate this stuff, I've been on it 30 days now, and it just makes me sick, I can barely get out of bed, I get winded, I feel like I've run a marathon, and I literally feel like I've had the flu for like forever.  I was on 280 mg a day... so I say, I want to try Topamax, because this other crap you have me on just isn't cutting it... Dr. M. says, Erin, let's cut it in half, I think the dosage is to high for you and it was causing your blood pressure to crash that is why you weren't feeling so well.... so I was like, well, what about the Topamax, he said, that he didn't feel that Topamax was a good alternative to the Verapmil and that he wanted me to try the lower dose.... so fine! okay, day 3 on the lower dose, still feel like shit, still feel lethargic, still feel as if I've been run over by a mac truck...so I call Dr. M. he says, Erin, give it time, you'll get used to it.... I said OKAY, I DON'T WANT TO GET USED TO FEEL LIKE CRAP....I WANT TO FEEL NORMAL! I am in the shadows right now, so if I stop it, I'll go in another cycle and well, I just got out of one, so, I am just ticked off beyond belief....oh and btw, I ask for oxygen script, he says, I'll give you one, but you won't be able to afford it... (I am uninsured), so whatever, hubby is going through the loophole.... see what I mean my blah!  It's bad enough that I have this over my head, and it's bad enough I know a cycle is coming, but, for the love of Pete, if I think a medicine needs to be changed shouldn't he change it??? He says that if he lowers the dose anymore, it become ineffective to treat Cluster Headaches.... (banging head on wall)  Any suggestions on meds?  Dr. M is totally against Topamax not enough data or some bullshit like that (pardon my language)

yeah, that's the loophole I was speaking... was going to cost me 2k my dr said medical prescription, so we going to the welder's places.... I just can't do the verapmil its killing me....

Get the O2 as an abortive, but have you tried lithium as a preventative instead of verapamil?

Lincare here has O2 (without insurance) for $15 a tank.  It isnt super cheap BUT also not crazy expensive. 

Now, you can also try energy drinks ($2 a pop) as an abortive.

I know right?? When I asked my doctor for a oxygen prescription he said I 'll give you one, but you can't afford it..he said a couple grand, I damn near fell off the table.  I didn't think it was that much but he insisted.  I don't know he is thinking I am asking for one of those box looking things or what.  My husband's mom was with me, and she said, he's right Erin.  She had a son that was on oxygen 24/7...I don't know, I get so many different stories, so I am digging doing my due diligence and doing the research, because honestly, I am confused.  As far as trying the lithium, my body doesn't tolerate it well...I get toxic fast...even at a low doses... My husband says I am just fragile LOL I say he's full of crap.... I haven't given up...I won't give up....I'll figure it out, one way or the other.... i also haven't slept in like 3 days either, so I am teetering on insanity at the moment.... but it'll work itself out........ I hope!

PLEASE DON'T TAKE ANOTHER DOSE OF VERAPAMIL.

(Note: since it DOES help some people, this advice is ONLY for those who have a bad reaction to it).

I had the same bad reaction to Verapamil, my doctor insisted I stay on it and I am CONVINCED it is what made me shift to chronic because on it I felt my symptoms shift to those of a chronic.  A few years back there was a long discussion on it and I'm not the only person who thinks Verapamil made them worse not better.  If there's one thing I wished I'd known from the beginning of this it's to take charge of my own health and that means listening to my body about what medications work for me instead of a doctor who clearly is in over their head.  If you need courage about that, go through the archives and find where we wrote about that and then you can tell your doctor you've read too much anecdotal evidence that verapamil makes people with low blood pressure worse not better.

I'm overtired and shadowing right now so I don't have the energy to do the research for you & link everything to this post but you should research treatment protocols yourself.  Print them out and take them to the doctor if you want.  Though if it's an option you should probably find a doctor more willing to work with you.  This one seems too opinionated and unknowledgable to be much good.

A mention of Kudzu above....was wondering the amount a man of 175 lbs should be taking. I've been researching this plant for my husband's CH, speaking w/ herbalists etc. on it's benefits and find all positives about this "natural" preventative. Thought it could also help his belly and digestive issues.
Thoughts?
diane

Potter wrote on May 5^th, 2010 at 11:59am:


    I posted this in your other thread.  I'm gonna assume you overlooked it.

        Potter