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        New Message Board Archives >> 2002 Posts >> CH/Heart related ?'s
        
(Message started by: catlind on Oct 28^th, 2002, 6:42pm)

Title: CH/Heart related ?'s
Post by catlind on Oct 28^th, 2002, 6:42pm

I know there are alot of CH'ers out there that also have heart issues. I've discovered I apparently have some serious ones going on...no diagnosis yet, but I'm wondering what you do to abort attacks when triptans are out of the question?

If there's a good side to this, it's that verapamil is the med of choice for palpitations/arrythmias/tacchycardias that are causing problems.....so my hypotension will become a none issue and I'll get a win win with the new med (if that's the one they give me that is hehe)

Thanks for any info you clusterheads can give me :)

Oh yeah, another bonus is the oxygen.....it's a lovely abortive and does wonders for the heart! LOL

Cat

Title: Re: CH/Heart related ?'s
Post by Slammy on Oct 28^th, 2002, 6:48pm

Damn!

When I read the topic, I thought... " Cat is back!" and I was going to read something about wondering if there is a connection between Cluster Headaches and Heart problems! :D

Instead, she asks a good valid question! :(

Thanks for the misleading topic, Cat! >:(

and.... Who the hell are you, and what have you done with the "real" Cat! I want her back! ;D

Slammy 8)

Title: Re: CH/Heart related ?'s
Post by catlind on Oct 28^th, 2002, 6:54pm

ROFLMMFAO!!!!!!!!!!!!!!!!!!!!

Well I did read that there is an autoimmune link with both heart conditions and pituitary glands that are close in physical position to the hypothalamus so maybe they are related!!!!!!!!!!!!!!!!! ;D

The real cat got eaten by the backdoor.litmus.gen virus
GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR

but I'm baaaaaaaaaack.....and don't worry, it won't take long before you realize I haven't changed LOL

Cat

Title: Re: CH/Heart related ?'s
Post by Marc on Oct 28^th, 2002, 7:05pm

Cat,

Hope you meant Hypertension (high blood pressure) and not Hypotension (low blood pressure) Verapamil can actually aggravate Hypotension.

Is your heart problem related to Mitral valve prolapse?

Marc

Title: Re: CH/Heart related ?'s
Post by catlind on Oct 28^th, 2002, 7:12pm

No marc, I meant hypotension. I suffer from fairly low blood pressure. My norm is in 100's/60's. I've had it in 90's/40's many times. When they did my nuclear stress test, they had to cut it short because my starting bp was 118/67 and I was supposed to reach max heart rate of 158, I never made max heart rate because my bp went up to 157/92.

I think at this stage (depending on what diagnosis they give me) the hypotension will be the least of their worries and may be a benefit. I dunno....I have not had much luck researching cardiac stuff....it's too ... ummm cardiac-ese for a simple confused cat to understand LOL

Cat

Title: Re: CH/Heart related ?'s
Post by Jim R on Oct 28^th, 2002, 7:39pm

Cat,

Glad to see you're back! Now, Marc had a point - if you're hypotensive, verapamil can make it more so and you might be prone to syncope or passing out... I have high blood pressure- hypertension - and I take verapamil year round for the antihypertensive effects - in other words its hypotensive effects. I don't know what your heart problems might turn out to be, but I'm one who my docs will only approve the use of Amerge for as far as triptans. They don't dare let me "do" imitrex because they really don't know - despite a cardiac stress (treadmill) test that turned out okay. They say that test only shows 60% of a potential picture of one's heart health.

Now, having said all the above, I am assuming you do use O2, right? I think I remember you mentioning this. And, barring triptans, of course there are narcotics, but I think you don't like those either...although when O2 fails me, that's what I have to use sans Amerge (which I still don't dare to do...) I don't know what else might help...maybe others here can pipe in too. Regardless, best wishes in this and glad you're back! - Jim R

Title: Re: CH/Heart related ?'s
Post by Ree on Oct 28^th, 2002, 8:02pm

I have really low BP too, Cat you have to watch the meds your'e on big time... sorry to hear your having heart issues. I'll be happy when they finally tell you what your diagnosis is... Most people that can't use the triptans use O2 but I dont know if that is ok for you either... I wish I lived closer so I could watch the kids for you and give you a break... my best girlfriend is having heart problems right now and doctor says to rest rest rest... but how can YOU when you suffer with CH... Prayers are with ya girl... love to ya Ree

Title: Re: CH/Heart related ?'s
Post by talitha on Oct 28^th, 2002, 9:35pm

Cat,
Ditto on the hypotension-my bp is usually 80/40 and it freaks the medical folks out. i read someplace that there is a connection between episodic clusters an internal carotid pressure. incredibly intelligent ch that i am-i decided to squeeze my neck really hard-made the ha much worse-i don't recommend it. verapamil helped for a few bouts for me (back in 1996) but had to stand up real slow so as not to pass out.
also, i do have mitral valve prolapse-recently diagnosed. Hmmm.
peace and grace,
talitha

Title: Re: CH/Heart related ?'s
Post by Svenn on Oct 29^th, 2002, 6:18am

Hi Cathy

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: CH/Heart related ?'s
Post by catlind on Oct 29^th, 2002, 6:30am

Talitha,
My son was diagnosed with a congenital heart defect, specifically a mitral valve prolapse. There is a very long history in my family of heart disease both maternally and paternally. My Dad dropped dead from unexplained cardiac reasons.

We are starting to wonder if that congenital defect is present in more than just my son, and that perhaps it's also present in me. Through my research I have found that there are some areas that they believe are genetic, there's a particular gene that is passed on that causes all these problems.

Of course, modern medicine can now easily detect these things and then allow folks to take pro active measures, whereas when I and my parents etc didn't have that advantage.

Anyway, we'll see. Right now all I know is I have low b/p, palpitations, and arrythymia that they are saying is a tacchycardia, and that's about it hehe.

Will find out more on Friday. The O2 is a great asset for the whole heart thing, and it does help alot with the CH's, although after about a 6/7 kip it doesn't abort it. I seem to have to catch it right at onset for the O2 to work, and with a 2 year old around that has turned into a typical 2 year old devil child, it's hard to just run to my room and get my O2.

Hopefully all will be well and nothing serious will come out of it :)

I was just hoping any members who have experienced heart issues would be able to give me some help on what else I could use as preventatives (although my celexa seems to work - I'm out of cycle now) but it doesn't look like anyone is going to approve any triptans :/ I'd rather not take narcotics, but I'm not keen on riding it out without meds either...too many times has my hubby had to physically hold me from running out to the road to find a moving car to stick my head under hehe.

Cat

Title: Re: CH/Heart related ?'s
Post by Hound_Dogg on Oct 29^th, 2002, 7:15am

Jim R.,

Did you have the reg Stress Test or was it a Nuclear Stress Test. The Nuclear stress test (Stress Test with Radioactive imaging). Is at least 80percent accurate 90percent in men. This is really no more invasive then the regular stress test, just takes a little more time and requires an I.V. line. But the extra accuracy for me, was worth the extra time. Also, ask your doctor about daily aspirin. I read somewhere (Can't find it now), that they tried to do a placebo-controlled, long-term study with physicians on the benefits of daily aspirin therapy. But they could not find many physicians who were willing to risk taking a placebo.

Take care...

Title: Re: CH/Heart related ?'s
Post by catlind on Oct 29^th, 2002, 7:35am

Dogg,
You had the nuclear stress test too? Did they tell you what they were looking for? They keep doing all these tests and no one is telling me anything other than what I already know and that I have a T-wave inversion.

Any info you can give would be appreciated :)

Cat

Title: Re: CH/Heart related ?'s
Post by Hound_Dogg on Oct 29^th, 2002, 9:17am

Cat,

I've had a couple throughout the years. A Stress Test is mainly a special EKG where they can check your heart's electrical activity at rest and upon exertion. This part of the test is good for checking any unusual heart rythyms, prior heart attack and to a lesser degree any potential blockages. With a nuclear stress test, you get all the benefits of the Stress Test along with an imaging of your Heart at rest and upon exertion. The Doctor can then get a clearer picture of your overall Heart Health. There is also a test called an Echo-Stress test, which is also about 80 percent accurate.

Cat, they could be looking for any ailment pertaining to your heart, with this test and I'm not quite sure what a T-Wave inversion is. But a great site for heart health is www.heartcenteronline.com...I would check it out..

Dogg

Title: Re: CH/Heart related ?'s
Post by Sweet_Landings on Oct 29^th, 2002, 9:27am

Hmmmm? Low BP seems to be a common factor, as mine too runs low. Generally in the 90's/60's range. For some reason while I was on the Verapamil in rose into a more 'normal' range but within a week of quitting the Verapamil it was back down. Doesn't make a bit of sense. It may have dropped because I started the Topomax when I stopped the Verapamil and experienced a HUGE reduction in pain.

Makes you wonder...