Dizziness Revisited

[Bucky]

OK....this dizziness (aka Orthostatic Hypotension) is getting to be very obnoxious.

Symptoms: 70% of the time when I stand up from a seated position I get very dizzy. Sometimes the dizziness hits immediately and I have to stand still for up to a minute to get stabilized lest I fall on my a__. Other times I stand up and walk 10 to 20 steps before the dizziness sets in.

Sometimes I am very, very dizzy and other times less dizzy. Sometimes the dizziness is accompanied by tingling sensations that either run across my back or up my legs.

Often when I am dizzy I also get a feeling in the pit of my stomach that is kind of like heartburn.


First Question: Please, does anyone out there have similar symptoms?

Second Question: Is this silliness one of the defining characteristics of HCM?

Third Question: Is there anything at all I can do about this? I have run the gamut from jumping off the nearest bridge (not higher than 3 feet off the ground you know) to saying to heck with it and buying a keg of beer to drown my sorrows

This all started about a year ago when my first symptoms of HCM Arrived and it has been getting worse since. This aspect of HCM has seemed to have stabilized somewhat over the last few months, but is certainly very, very bothersome.

Yes, I am keeping hydrated. Yes I am taking in a bit more salt to keep my fluid level up.

Help............"I've fallen and I can't get up". Well not literally, but certainly figuratively...This is an obnoxious symptom and I want it to go away!!!!!!!!!

So, I am anxious to hear from other dizziholics. There has got to be something we can do about this other than fall all over ourselves and others. Isn't there?

Thanks,


bucky

[mbcube]

Asking HCM'r if they get dizzy is like asking Dolly Parton if she sleeps on her back. You'll get a loud YES. As for the second question - I think that any serious heart problem involving the LV will cause this disturbing problem. I know you've played with you meds a lot (haven't we all!) and I question if you notice any difference with these. Was it worse on some, less on others? I'd report your findings to your doc. (and if he say just live with it, tell him he should try it).
Some of my tricks: Rise slowly (I fake a bad back & stretch). When exiting a car do not "swing for momentum" and look down first - Keep level headed. I like the trick you taught me & now keep my cell phone handy & pretend I'm talking when I exit a car till the world stops spinning. Try to breath deep a few times before to increase CO2 levels. Avoid rollercoasters and gymnastic competitions.

[Bucky]

Hi MBCube:

Yes....the old "I'm talking on my cell phone" works pretty good. I have managed to fool most people that when I get out of the car my cell phone mysteriously rings and I have a long one sided (listening) conversation with person(s) unknown until my head stops spinning. My wife always asks who I am talking to ......I have started to respond "God" who may be the only force that can solve this. Lisa has suggested another drug and I am waiting to see if my all knowing Cardiologist will OK it.

I've tried 4 meds, Verapamil, Metroprolol, Bisop????? and Diltizazem.....all of them make me even dizzier.

While it (the biG Dizziness) make me feel "one of the group" I am sure hoping that one of our brotherin or sisterin (ha, spelling) has some kind of solution. ..Like hold your breath till you turn purple, or inhale nitrous oxide or whatever.

I've tried the lowering my head when I exit the car routine.....it works very well. IN fact I';ve walked many hundreds of feet staring at the cracks in the sidewalk ("Just checking for ants sir, I am fine) but when I raise the head the BP drops and Mr. Dopey returns for up to 60 seconds. Why couldn't one of the symptoms be for instance "more gas", I could live with that....although perhaps this would be more obvious than the cell phone routine. Oh well back to watching the ceiling rotate which was not a good thing after too much beer in college and is definitely not a good thing now.

bucky

[RRKamm]

Bucky,

Dizziness? Mine is just how you describe. I get up from a seated or laying position, take a few steps and the dizziness kicks in. I just kinda stop, hold onto something for support and wait for the world to stop spinning.

Sometimes it is worse than others. I pretty much know at work and at home where there are support items (counters, copiers, cubicle walls, etc) at the points where the dizziness hits and head to them. When I get there, I just wait it out.

All the trills of a carnival ride without having to spend the money for a ticket. And I never did like roller coaster!

Later.
Bob

[Bucky]

Ah Bob:

I am getting the idea for a Broadway show. We have a bunch of HCMers seated on stage and we have them stand up in unison. It is kinds of a variation of "Stomp Out Loud". We'll title the show,,,,,,,,,,,,"All Fall Down"

Nice to know I have company.....Bob...sorry it is you.

One question. Do you notice that you get dizzy every time you stand up on only most of the time? What has your Dr said.......?


Bucky

[mbcube]

Hi MBCube:

Why couldn't one of the symptoms be for instance "more gas", I could live with that....although perhaps this would be more obvious than the cell phone routine.

bucky

Lisa already has a tough time finding a hotel to house 200+ cardiac patients. Imgine having 200 gassy folks with bad hearts!
Nobody would have us!

Although I may finally have a medical excuse I could blame instead of the dog . . .

[Reenie]

Lisa already has a tough time finding a hotel to house 200+ cardiac patients. Imgine having 200 gassy folks with bad hearts!
Nobody would have us!

Although I may finally have a medical excuse I could blame instead of the dog . . .

http://img.photobucket.com/albums/v602/reeniez/yociexp108.gif

I have nothing to add but this comment made me truly laugh out loud!

[Bucky]

I am still looking for the magical cure...somebody out there must have some good advice for dealing with the dizzeeeeees, eh?

Bucky

[Pam Alexson]

Maybe you need to see an allergist or even a rheumatologist or EENT. Could there be another condition going on at the same time or triggered by your HCM and meds ...perhaps true. Many w/ this condition report a fluid build up in the eustachian tubes. Without HCM they are able to treat it w/ some antihistamine. Get this dizziness evaled by an ear, eyes, nose and throat person to see if there is another issue/ connection.

Pam

[Bucky]

Hi Pam, how are you this AM.

You've hit on one thing that is so true.....

We (I) get so focused in on HCM symptoms it is quite possible to overlook other things that might be going on.

"Sir, did you know your leg is missing. Well yes, but that is an HCM Symptom don't you know. Don't let it bother you"

And, as my cardio tells me, I am not getting any younger..."Thanks Doc"


bucky

[RRKamm]

Bucky;

I would say the dizziness is about half the time. The cardio basically says it's part of the disease. Like most of us here, I've learned to accept and deal with it.

As far as the movie goes, we could all be extras if they ever re-do "Earthquake". When the earthquake is supposed to hit, we all jump up and start running. The stumbling and falling down would be a natural.

mbcube - with your rendition, we would need to find an outdoor venue in a very soft grassy area.

Outta here.
Bob
:big_bowl::big_bowl:

[Bucky]

Bob:

I like it. An on call group of extras for disaster movies....Now we are talking. Something good comes out of everything....

take care,

Doug (aka Bucky)

[Desert Flower]

Bucky,

One of my doctors kept telling me that my dizziness was not from HCM bc while he was doing my echo I got dizzy and nothing was showing on the echo. So he is convinced it is caused somehow by malabsorption issues from my lap band surgery in January. In any case, I am on sigulair too and that can cause mid ear infections, and it seems I have to treat one every few months. My dizziness (not my ditziness!) has been gone for two weeks now. I am glad you brought it up, bc I thought I was crazy and started doubting myself. In any case, I am now drinking a lot of electrolyte enhanced water, and that may be what is helping me!

Just a thought,
Eva

[gfox42]

Hi Doug,
I suffered from exactly the problem you describe before I had my myectomy. But the other thing that changed at that time was that I also went off ACE inhibitors and on to Clonidine. So I can't tell you that it was certainly one problem or the other (or it could have been them both together).

But I can tell you that most people don't actually notice the bizarre behavior that this leads to. Every time I climbed the stairs at work, I'd get to my floor, walk 5 or 10 steps, and then usually have to grab the wall (or answer my cell phone . . . that one never occurred to me). People who watched me do this for a number of years never actually noticed it. When I mentioned it to someone last yr, she had to think long and hard, and finally remembered one day when she noticed me standing in the hallway, doing nothing obvious.

Back to a more serious note: my cardiologist and I recently experimented with changing my dose of Clonidine. Suddenly I was back to my old self, getting those cell phone calls all the time.

Gordon

[Bucky]

Hi Eva:

Thanks for your input. I'd drink just about anything to get rid of the dizziness. I'll try the water you suggested...You'll see me float by.

Gordon:

Thanks for the input. BTW, what is Clonidine (SP) that is a new one me. Lisa has suggested I ask my Dr. about Nadalol (which is an older formulation).

Of course I still am in that never, never land of I feel worse when I take the meds, but I may check out sooner if I don't take the meds. (There is a big question mark on that statement, because no studies have shown it one way or the other).

One person a few weeks ago (in this forum) told me......."I am taking quality of life , bro.......if I leave the planet a few years early due to forgoing the meds so be it, at least I won't be as dizzy when I do leave"

We will see. Thanks to all for the input...This dizziness stuff is ...........obnoxious to say the least. Sometimes when I go to get out of my car I just sit there for a minute or two gathering my thoughts thinking "Here we go again".

Poor me.....Saying poor me to this group DOES NOT get me lots of sympathy, but it does get understanding and that is worth more than you can imagine to me.

Thanks again,

Doug

[gfox42]

Hi Doug,
Here's a cut/paste from a web site on clonidine:
"Clonidine works on specific nerve cells in the brain that are responsible for lowering blood pressure, slowing heart rate, and decreasing the body's reaction to the withdrawal of chemicals like alcohol, opiates, cocaine, and nicotine. Because of this, clonidine is often used to treat the symptoms of drug, alcohol, and nicotine withdrawal. "

I think the most important thing in terms of BP (for HCM patients) is that it doesn't act to dilate the peripheral blood vessels. But like any other drug that regulates your blood pressure, if you take too much of it, you'll be getting those extra cell phone calls.

I wouldn't say that it's affected my desire to have a glass of wine.

Gordon

[Midge Rollins]

I have never taken Clonidine orally it is an oldie but goodie BP med. I am on a Catapress patch, which is Clonidine but releases slowly and not all at once therefore my BP should not drop suddenly only to come back up when it wears off. With HCM I did not have BP issues mine was always so low I am not sure now how I functioned. I change the patch once a week. Never heard of it for drug treatment that is interesting.

[Bucky]

OK Gordon:

It doesn't affect the desire for a glass of wine...I love it. Now were talking ------- I knew this great group would have all kinds of good ideas.

Thanks,

Doug (Harry's Dad)