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        New Message Board Archives >> 2002 Posts >> Cluster&heartproblems
        
(Message started by: Svenn on Oct 30^th, 2002, 5:39am)

Title: Cluster&heartproblems
Post by Svenn on Oct 30^th, 2002, 5:39am

Hi Friends
With both clusterheadache and heartattack"heartproblems"
quitting the shots is no option at least for me.
I`m using verapamil retard 120mgX1+3X2,5mg Marevan for my heart.
125/80 bloodpreassure
Was at a convention about headache here last week.
It was 1 of the best neuroes in this field in Norway who was the speaker.
I told him my story abouth both things and all the meds that i`m using,and my question about the combination between Verapamil and Marevan.
He told me that he has 5 clusterheads that this combination work for,but the neuroes refuse to go out public with this because of that there has to be a close followups so the blood does not get to thin,"bloodtest every 3 week".Then he told me that there could be a "dangerous"sideeffect to get a blockage of arteries/wains in the brain.
That was a neuro that told me that
My personal neuro told me also that he has a patient with heavy migraine that is using the same combination.

Then comes the next question
Why is this so dangerous for us when this is the FIRST meds the cardioes give us for heartfailure

It seems the neurologist doesn't know what the cardiologist is doing, and vice versa

So the BIG question

WHO SHALL WE LISSEN TO

This things makes me rather mad and uncertain what to to with myself.
But still quitting the shots next time i get hit NO WAY
Not until that they can give me a repacement that works as good and fast as the shots.

any suggestion what to do folks?

Svenn

Title: Re: Cluster&heartproblems
Post by 2late on Oct 30^th, 2002, 4:45pm

i'll tell ya this, i've had a heart murmer all my life it's no big deal unless i take more than 360 MG of verap in one day, my heart skips like hell, it freaks me out. .........2late

Title: Re: Cluster&heartproblems
Post by Charlie on Oct 30^th, 2002, 5:58pm

All I know is that it's too bad doctors don't make as much sense as Svenn

Thanks

Charlie

Title: Re: Cluster&heartproblems
Post by Edna on Oct 30^th, 2002, 11:27pm

Svenn, sure wishing someone that knows a little more about the meds you're on would post an answer for you

But, guess since there's nothing here yet, I HAVE to put in my two cents. LOL

Kinda confused though, if they have to watch so much for the blood not to get too thin.....why would a horrible side effect of blockage occur? confusing to me

guessing though.......if I had to give an intelligent as possible answer..........I'd listen to my heart docs.......cuz since we all know here although the pain is horrific, don't know of anyone that has "died" from ch.......medicine effects perhaps but not from the actual ch. right?? SO THEREFORE my conclusion and answer to you would be to agree with you and skip the shots until you know more definite.

And from what I know you have been relatively pf of ch hits, which is quite good. Listen to your heart doc. Cuz I want my friend svenn around for a long time. Even with his crazy English as he says (which I know is not true)

After all, I know for a fact although it is some bastardly pain, one CAN live med free with ch.......did so for many years. Not a good thought, but hey, gotta do what you gotta do.

Perhaps using the 02 would be another route to go.

Well, long enough I know but hope I've helped some

Luv ya pal,
EDNA

Title: Re: Cluster&heartproblems
Post by Lapsi_Harmaahapsi on Oct 30^th, 2002, 11:48pm

Don't know what to do? Just listen to your heart!
Sounds good to me. :D

Title: Re: Cluster&heartproblems
Post by Hound_Dogg on Oct 31^st, 2002, 7:06am

Svenn,

The two meds you're on are Verapamil and Coumadin (Warfarin)in the U.S. I didn't see anything, in the PDR that would cause an embolism or blockage in your arteries. Coumadin or Marevan is a Blood Thinner used for Artherosclerosis and Verapamil (A drug most of us use) is mainly used for High Blood Pressure. So other then dangerously thinning the blood or causing Hypotension (Low Blood Pressure) in people with Cluster Headaches that are otherwise healthy, I don't see any other danger.

Definitely check with a third party Doctor on this one or even your Pharmacist (Chemist).

Can anyone else help Svenn on this?

Title: Re: Cluster&heartproblems
Post by Svenn on Oct 31^st, 2002, 8:48am

Just wish i could more english,then you would understand me friends :)

Svenn

Title: Re: Cluster&heartproblems
Post by nancyc on Oct 31^st, 2002, 10:58am

Svenn, I have to agree with Edna on this one..I would listen to your Cardiologist...Marevan can be a dangerous drug if you are mixing it with other drugs...I know you hate to let go of the shots but your life is more important....You will be in my prayers!....Oh, if you can, you may want a second opinion from another Cardiologist too.... ;Dnancyc

Title: Re: Cluster&heartproblems
Post by Edna on Oct 31^st, 2002, 12:06pm

Gee Svenn my pal, WHAT ARE YOU TALKING ABOUT???

"Just wish i could more english,then you would understand me friends "

WELL GEEEEEEEEEEE

If your English were any more...better, whatever it is you think you need......I'd be reading your mind before you think it......... ;D ;D ;D ;D ;D ;D ;D

Luv ya (even if you don't want to send Hans to me) LOL

your friend and pal,
EDNA and btw......if you'd teach me your language instead of only cussing at me in it.....I'd know more than I do about you.......WOW.....that could be dangerous

Title: Re: Cluster&heartproblems
Post by Charlie on Oct 31^st, 2002, 9:22pm

It makes sense to pay attention to the cardiologist. Neurological stuff can wait.....especially for CH which won't kill you. At least that's what I'd do.

Charlie

Title: Re: Cluster&heartproblems
Post by catlind on Oct 31^st, 2002, 9:44pm

one thing I've noticed is there have been a few of us CH'ers with heart issues and a few recently have reported mitral valve prolapse as well as CH. I can't help but wonder if the oxygenation process of the heart (changing oxygen poor blood to oxygen rich blood) might be an aggravating factor to CH....not enough O2 getting to the brain. Just a thought.

Cat

Title: Re: Cluster&heartproblems
Post by norma on Nov 1^st, 2002, 3:27am

i would listen to cardio as well, i had to go to cardio to get ok to take inderal before neuro would give me inderal, since i have heart problem and really low blood pressure.

you can ask another cardio for advice, or at least in US the pharmacist have been more helpful then damn drs.

PFDN

I agree if meds work and no side effects keep on taking it, thats what I told neuro before I went to cardio, thought he was going to have a heart attack or stroke!
I figure dr's covering their asses, to bad all of them dont get at least 1 cluster a GOOD one in their lifetime, then maybe they would have a freaking clue, no matter what field they practice in.

Your english is better than some American's so dont sweat it