What meds are best for pre-syncope caused by obstruction?

[Cynaburst]

Hi everyone,

Before I even start the rest of my post, I know that the answer is to talk to your Dr., but since he is at NASPE until next Monday when I see him, I will post and see what everyone else thinks so I will be prepared next week.

I have HOCM, and was implanted with an ICD/pacemaker in February.

I was feeling pretty good, being paced at 60 bpm about 50% of the time, and am taking 25 mg. of atenolol twice a day. I was having the occasional arrythmia, but feeling less short of breath and generally better until last week when I went to visit my family in New Orleans where it is much hotter and more humid than here in sunny California.

(I was also taking antibiotics and guenafenesin for a sinus infection which may or may not enter into this), but anyway, while I was there, I started having much worse arrythmias and almost fainted several times. My ICD was quiet at least, so apparently the rhythms weren't dangerous, but I was feeling really bad.

I called my doctor at home who wants me to have blood work done and who I will see Monday, but in the meantime over last weekend I almost fainted several times in one day. In a panic I called my dad's cardiologist who is also a friend of our family and treats my dad's HCM. He felt sure that my symptoms were being caused by obstruction and not arrythmias since my ICD didn't go off and due to the weather and other circumstances. He advised me to drink alot of water and to be very careful, advice which I took to heart and which really did help.

In the meantime, though, I still am having terrible palpitations. I am sure my meds need some tweaking and I am thinking about asking for Verapamil. Up until now, the only thing I have taken is atenolol, which has been ok, but is obviously not entirely taking care of the problem.

Any thoughts or words of advice?

[kathyn2]

This may be stupid advice but maybe you should get your icd/pacemaker checked out and make sure it is still running the same way as when you had it installed. Perhaps something has gone haywire or something. I hope you can get in asap and get everything checked out. I am sorry you are not feeling too well Cyn...

[kathyn2]

PS Your baby is adorable!!!

[Cynaburst]

Hey Kathy,

No, your suggestion isn't stupid...the doctor who installed the ICD is who I am seeing next week when he returns from the same conference Lisa is at. They do check the device every 3 months, and I am due and will do that next week.

And thanks for the compliment about the baby. I am going to upload some new pics from the trip soon, so stay tuned...that one is old.

[Pat]

Hi, Cynthia!

I have learned that much of my own dizziness is related to my blood pressure dropping too low. We keep it pretty low with the beta-blocker normally. And when I get dehydrated it drops pretty fast. We do have hot--and sometimes humid--weather here in Yuma and that has always made it worse. So I drink 3 to 5 liters of water daily in hot weather. Since you are not acclimated to the hot humid weather in New Orleans you probably lost fluids fast.

I'm also wondering if sometimes I have a sodium depletion when I'm out for long in the heat because I'll feel dizzy and generally yucky at the same time as I crave chips. I usually find that eating something salty, drinking more water, and resting a bit will make me feel better. I'm going to check out this idea with my cardiologist tomorrow!

Have you a way to check your blood pressure when you're feeling dizzy and having the irregular beats? That would give you more information to take to the doctor next week.

Good luck--and always sit down before you fall down! :lol: (I've learned that the hard way!)

Pat

[Reenie]

Sometimes guifenesin has sudafed in it. You should be careful with any decongestant. Many of them will make your heart race or act weird. Ask the doctor who prescribed it to you whether or not the one you used might've had the sudafed in it.

Reenie

[Lisa Salberg]

I am hitting the road in a few minutes so ya caught me before NASPE!
Great advise guys - I would check the device first and soon - if you had been traveling there is a chance that you were in a magnetic field that altered your programing - call your ICD clinic and ask to get checked out.
Lets work on that one before you head off to more meds.
Of course if it is not the ICD then lets look at the BIG picture and try to find the cause of the problem - this may mean an event monitor, blood tests and maybe some non cardiac work ups based on your history.
Be well -
If you need to get intouch with me - call the office and they will get your # to me on the road - I have a 4+hr drive ahead of me..WITH MY CELL PHONE!
Take care,
Lisa

[Cynaburst]

Hi guys,

Thanks for your suggestions. Pat - My Dad's doctor suggested exactly what you did...eating salt and drinking water. I am back in L.A. now and am definitely feeling better, but am off to the lab today to check my magnesium and to have a Chem 7, whatever that is. Also, I am hypothyroid so I am checking that out too.

Reenie - As to the Guinefesin, it doesn't have any sudafed in it because I already know I can't take that, but I wonder if the Guenefesin alone has any affect. I have stopped taking it until I can get checked out. Also, sinus infection is now gone.

Lisa - As soon as you are done with Dr. Cannom at your conference, I will see him Monday. I am off to have those labs done today so I will have them when he gets back. As I think I told you before though, I wasn't sure my symptoms were improved enough before, esp. the palpitations/chaotic heartbeat feelings. That is what was and continues to be really bothersome, so I will discuss with him.

We are going on another very hot trip later this summer, and I would hate for this to happen again.

By the way, I also asked for a pat down both ways and avoided the metal detectors, so that shouldn't be the problem, but who knows. I have been to lots of stores with them in the past few months.

[kthanki]

Some thoughts.....

If you find change in the rythms, do not wait for the 3month check up. I had pacemaker installed 4weeks ago, and i have been to my packemaker tech. almost everyweek. Now (Knock on wood), I feel much better.
I have an excellent pacemaker tech who reads up on HCM and research papers on various adjustment techniques for our type of problem before my appointment.

I felt a lot of palpitations a week after my pacemaker. It turned out, I had the AF suppression feature ON since my doctors had thought I had A Fib. And it was responding to every PAC or PVC. Some times antibiotics and food/liquids increase your PACs and PVCs.
After they turned off the AF suppression for me, I have been feeling great. Also changing my Toprol dose changes premature beats, and it takes a week after the dose change for them to settle down.
Hope you feel better....

[Pat]

An update from the desert southwest, Cyn! It sounds like you're addressing everything which needs to be checked out and you'll have answers soon. Great!

Knowing that I drink lots of water, my doctor suggested today that when I know I'm going to be spending an extended period outdoors doing some exertion in the heat, I should eat some salty stuff the afternoon and evening before. Or drink Gatorade instead of some of the water while I'm in the heat. It sounds like there's some agreement here that sodium loss could at least contribute to increased symptoms.

Interesting . . . .

Keep us posted, okay???

Pat

[Toogoofy317]

I've had some of the same experiences as you with the almost fainting and things like that. Being that I live in Florida I am constantly fighting the humidity and heat. We have already hit 95 twice this past week. A couple of those days I was out riding the Segway all day in a vest, lycra shirt, and black polyester pants. Needless to say the heat was getting to me. I'm hypoglycemic as well and have very low blood pressure and we are not sure anymore what is causing what.

To make a long story short I was working last night and guess I bent over to fast and next thing I found my self lying on the floor. It must not have been long becasue I jumped up real quick and everyone started laughing so for the moment I laughed it off. This morning I ended up at the Dr. office with a sprained shoulder. Fun! So I guess at this point any insight would be nice. I think I might give the docs up in Boston a call and see what's up!

Oh well, my two cents.

Mary

[Karen P]

Good morning Cindy,

#1 thanks again!

#2 You are familiar with Jamies story regarding syncope & pre syncope. Since she was started the Florinef 0.1mg............it hasn't been a problem...at all. This med helps keep the fluids up and appears to have helped tremendously. She's been on it for about 2 months now.

Jamies home from college and says hello and where is this picture of the baby????

Take care!!!

Karen

[Cynaburst]

Hi Karen,

I had forgotten about Jamie's situation. That is something to think about. I will discuss with the EP.

As to the picture, here it is again. For some reason, every time I post it, it works for that day, and then goes away. I wonder if it has something to do with being logged on to my ISP or not.

Anyway, here is a small one. We will see how long it lasts. This picture is a few months old. We just celebrated his 18 mo. birthday, and he is doing great.

[Karen P]

Hello,

I still can't see the picture?!? I'm clicking on the X under your name, but I can't open it. I'll wait till the kids get home from school.....they can educate me!!!

Thanks.

[Lisa Salberg]

Dr. Cannom should be home now...GO GET HIM! and tell him I said hello..
My goodness that man has a strong hand shake - he left ring marks on my hand!
Be Well and DRINK water!!!!
Lisa

[Cynaburst]

Well, everyone....

I am afraid my visit to the Dr. today was pretty anti-climactic. Basically, he told me to stay hydrated, and he wants to do another echo in a few weeks and then to talk to one of the two HCM specialists I saw a few months ago before he decides what to do. He doesn't think we should increase atenolol right now, or switch to/add something else until he sees whether my obstruction has increased.

My last regular echo was resting gradient 60, but then I had a stress echo a few weeks later, and at rest gradient was 20, and following intense exercise went to 80.

Well, as always, I guess we have to just stay posted. I fondly remember the days when I would just go to the Dr. and they would immediately fix me....no waiting, no tests,......

Yuck!

[Lisa Salberg]

With that gradient it sounds like a septal reduction MAY help OR simply stay WELL hydrated will help it.
Hang in there!
Lisa

[Cynaburst]

Well, my story continues....

I saw the guy here in L.A. today who I suppose is my new cardiologist...I saw him for a second opinion regarding my ICD implantation recently, and he is the HCM expert to whom my EP doc is closest. Also, lucky for me, he is close by. At my EP's suggestion, I went to see him today.

I had an echo which shows that my gradient and mitral regurg have gotten much worse. I didn't get the actual numbers, but apparently the regurg went from mild/moderate to more like severe, and the gradient was somewhere north of 80 mm, when it used to be non-existent, and then for the last year or so, was only 20.

The doctor wants to increase me gradually from 50 mg. of atenolol a day to 100, and see how that does. If it doesn't help, then he wants to try me on Norpace. I guess I am somewhat relieved to hear that he thinks there is a reason for my recent symptoms which he can objectively see and treat, and that I don't seem to have to have the tilt table test that he had mentioned before. That didn't sound very pleasant.

Oh, I forgot, he also wants me to take 1200 mg. a day of Motrin or Advil. 2 pills three times a day. He says that it will help keep me retaining water and has a vasoconstricting effect, which will help keep the fainting in check. I am also instructed to drink and eat salt....At least I like salt, but I still have to lose 20 lbs.! Well, maybe one day!

Anyway, wish me luck. Hopefully this will help, but at least I feel like I am on the path....He told me that he is optimistic that we will get things under control.

Stay tuned.....

[Reenie]

Cyn, I'm so glad that you've got a plan of attack now. I know how miserable it is to feel yucky with no way to fix it. Good luck and keep us posted.

Reenie

[Lisa Salberg]

At least we know WHY - now lets work on fixing it.
RE the salt - tomato juice is a good souce of LOW FAT sodium (and you get your veggies too :D )
Be well,
Lisa

[Cynaburst]

Lisa - Thanks for the tip re: tomato juice. Although I would love to run out and eat alot of french fries, as it is I still have 15 lbs. to lose!

My big crisis today was finding some clothes that fit to wear to my first job interview since my son was born 19 mos. ago!

I told the doc yesterday I HAVE to start exercising again soon. By the way, I went up to 62 1/2 mg. of Atenolol today, and so far, so good.

[Lisa Salberg]

Well...how did the interview go???
Yeh the tomato juice is a trick I learned long ago. It has TONS of salt in it!

be well,
Lisa

[Toogoofy317]

On the whole adding salt part I was told that to by my local cardiologist office the last time I was there because my BP was extremely low. It is normally low and the Verapamil and Isordil make it even lower 80/60. So I tried it and a week later I was in the hospital with CHF. I was dehydrated/retaining fluids go figure. As I was later told by my primary that it is not safe for anyone to add salt to the diet just to raise BP is there any truth to that?

Mary

[Lisa Salberg]

Again we are in that odd world of HCM and we tend to be the exception to many rules - -I have been on both high salt diets and months later on diuretics for fluid retention... it is a balance that is hard to find. Your body NEEDS salt---balance is the key!