meds

[Doreen]

Hi,
I am very worried about the medicine that my cardiologist has put me on.
Ramipril 5mg and Metoprolol 25mg. I stopped taking the metoprolol after only being on it for 5 days, I felt like some one was sitting on my chest, I couldnt take a deep breath and had a headache for four days out of the 5. I have read horrible stories about the dangers of Metoprolol and one of the main side effects is developing diabetes, which my brother passed away from and my mother was a diabetic also with heart disease and passed away from those two also. So right now I am scared and worried because I want to do whats right for my heart but I also dont want to develop other medical problems or try to live my life being so tired all the time. I guess what I really want to know if anyone has found the right beta blockers and ace inhibitors for them, and what are my choices? Safe choices?
Thank You

[Cynaburst]

Doreen - Ace inhibitors are not typically used for HCM while beta blockers, like metoprolol, are. We would suggest that you visit a center of excellence that is used to treating HCM (there is one at Northwestern in Chicago) - see the links page. And we would also strongly suggest that you call the office at 973-983-7429 and make an appointment to discuss your particular situation.

Most people here, including myself, take beta blockers with no problems whatsoever. I personally take Toprol, which is a type of long acting metoprolol, and feel much better on it.

[gfox42]

Hi Doreen,
It's common for people to feel a strong effect of beta blockers at first, but adjust to it. I know that when I first started taking Toprol, I felt tired and certainly slept a lot; that's long gone, and I've been taking big doses of Toprol for years without problem.

That doesn't mean it's necessarily the best drug for you, but it is used very widely and successfully with HCM patients. I'll echo Cynthia's suggestion: call the HCMA office, and make an appointment to see an HCM specialist. Discuss drugs with them.

And regarding ACE inhibitors, these can be problematic in HCM patients. Another reason to see an HCM specialist.

Gordon

[Reenie]

Doreen, to clarify what Gordon and Cynthia are saying, the Ramipril 5mg is an ace inhibitor. The reason they're not typically used in HCM patients is they tend to make the heart pump harder, something an HCM heart does too well on its own. I agree with you calling the HCMA office to get information on other medical centers that can help you manage your HCM. I think you'll feel much better once you have a doctor who understands your condition and can really help you with it.

By the way, on a totally non-related topic, my middle name is Doreen and I've always been called Reenie. Doreen isn't a very popular name, is it? :)

[Rainey]

Actually, I've been wondering about my medicine, too, lately. Back in November when I was first put on 25mg. of atenolol I had NO problems. My resting heart rate was consistently between 48-52 and I didn't have dizziness or too much light headedness. That was great for the first month. Now I've been on it for 3 months and my resting heart rate is typically between 60-64 and NOW I'm dizzy quite often - even if I just take a deep breath but very much so if I bend over or get up quickly or man, just do ANYTHING. I get some shortness of breath but it's usually only in conjunction with how swimmy my head feels at the time. I guess that I thought that the problems with the meds would have been in the BEGINNING but that's when I felt best. Is this normal? Since my diagnosis I've gained 5-6 pounds and am starting to get very lethargic because I've been afraid to exercise and all. Well, now I feel that I HAVE to do something because I was overweight to begin with and this isn't helping matters. I guess that as long as the light headedness is because of the meds I'm alright but I'd sure hate for this to be a sign that the condition is worsening right when I'm deciding to overcome my fear of exercise and get back into it, you know? I was told back when I was diagnosed that I could still exercise and everything (just shouldn't let heart rate get above 140, should wear heart monitor and work only with lighter weights) but the more I read and talk to the people on here, it seems like my outflow gradient of 185 isn't very conducive to very much exercise. I'm going to see Dr. Lever up in Cleveland in 8 weeks but I am going to start at least getting back into walking right away before I turn into a bigger BLOB.

[Pam Alexson]

Rainey ...probably but NOT definitely ..it is the gradient which is causing those symptoms of pre-syncope and not the atenolol. The fact that your P has gone up could indicate the harder work your heart is now doing to get the blood squeezed out with each beat; with any activity. I would agree w/ walking and just mild activities until you see Dr Lever.

That 185 ( which could be higher or lower on any given day for many varied reasons) is significant at 185. I am assuming it is a reading of your gradient when provoked ( sorry I did not go back and reread). IF anyone had a RESTING gradient that high I would say ( do very little until you see Dr Lever.)

I had a provoked gradient as high as 240 and higher at any given reading of echo. I was barely able to function. Before my myectomy.

If you are carrying extra fluid that too will effect your gradients at rest and provoked and it will make many symptoms as the increased volumes cause increased wall stress and hence increased preloading of the ventricle pressure/ hence all around symptoms of heart failure.
Here is a snipet of a statement addressing the exagerated version of what the picture can result in when one is hospitalized with HF.

{The potential detrimental effects of cardiopulmonary congestion and elevated ventricular filling pressure have also been well described .These effects include further neurohormonal activation, subendocardial ischemia and cell death by necrosis or apoptosis secondary to increased wall stress and decreased coronary perfusion, worsening of mitral and tricuspid regurgitation due to chamber dilation and spherical remodeling of the ventricles, and impairment of ventricular systolic and diastolic functions . Furthermore, correction of volume overload has been shown to have a favorable effect on symptoms and a positive effect on length of stay, rate of rehospitalization, and long-term survival and should therefore be an important therapeutic goal. At the same time, however, recent publications clearly indicate that this therapeutic goal is often not achieved, and patients with DHF( decompensated heart failure) are frequently discharged with persistent symptoms and with minimal or no weight loss or even weight gain during the hospital stay. What is the reason for failure to achieve therapeutic goals in many patients admitted with DHF? Is it lack of effective therapy or ineffective use of existing therapy? The answer to this question is probably both.}

Heart failure can get worse when treatment of obstructions is ineffective. I am glad you will be seeing Dr Lever. IF you are eating more TRY very hard to cut back on your calorie intake and DRINK lots of water. Weigh yourself everyday same time, same level of clothing on and keep tract of it. WRITE IT DOWN. If you are still gaining weight and not eating much more then usual, it may very well be fluid you are gaining. Watch for swelling in areas like abdomen, arms, hands , feet and ankles even neck area may feel tighter. If none of this is evident just follow a careful calorie count til you see Lever.

Pam

[Pam Alexson]

Doreen..here is an excellent statement of how ACE inhibitors are HISTORICALLY recommended w/ those who progress w/ HCM.

http://www.enewsbuilder.net/hypertrophic/e_article000227513.cfm

That said, some individuals who have been trialed and failed on gold standard treatment of BB's and Calcium channel blockers without progression of HCM have gone on to use ACE inhibitors alone or in combination w/ BB's or CCB's and done real well.

There is much research out there and for some with hypertension induced HCM, ACE inhibitors may also favorably remodel the stiff left ventricle. IT takes a great cardiologist: often, as we from this group here have experienced, an HCM specialist to properly discern the difference.

Pam

[Rainey]

Thanks, Pam. I'm actually going to start REALLY watching what I eat because I KNOW that at least some of the weight is poor choices by me. I weighed myself this morning and I'm up four pounds from last week so now, I've gained a total of 8 pounds in about 10 weeks or so. I'm SURE that part of it is me (but not FOUR pounds in a week's worth). I do feel bigger but I just assume that it's the weight and not water. Not sure. I haven't been wearing my rings lately but that might just be because of fat-weight, too. I'm leaving for vacation on Thursday and usually that's a reason to eat and not care but I'm not going to look at it that way. I'm packing GREAT snacks for the car for the family to eat and I'm going to make a totally concerted effort to eat well when we're at the condo on vacation or when we eat out. If I'm still up when I don't feel like I should be when we get home, I'll probably consider making an appointment with my cardio until I can get up to Cleveland. I don't feel these episodes all the time and they definitely get worse as the day goes on - so far, today is FANTASTIC. Let's hope that it continues. I thank you so much for your information. I really don't know what Lever will say when he sees me. But, YES, the 185 is only upon provocation. I have no gradient when at rest - which is why I've tried to remain at rest as much as possible! ;)

[Bucky]

HI All:

You've got to love this condition. Drink more water, drink less water. Eat as usual, don't eat. Take this, take that. Use an ACE Inhibitors, no ACE Inhibitors Exercise, but not to much. My chest hurts, my chest doesn't hurt, I've got swelling, I don't have swelling, Ive got a headache, I don't have a headache. I'm big and getting bigger. I am big and getting smaller....etc, etc.

Since I am in the pool with the rest of you I can sure relate to this and as the pirates say,....................."arrrrrrrrrrrgh matey".

Just know that whatever you are feeling or experiencing someone in this wonderful group has and they will give you a "heads up" on what they did or are doing.

I am on the metoprolol bandwagon now and the results are mixed. Basically I wish the whole thing (HCM would just disappear...but I have the feeling that won't happen. I tried Beer therapy and that actually works for about 15 minutes, but I would not recommend it for the long term.

So short of that, I take my pills, I keep a daily log, I note my weight and reactions and I talk to my HCM specialist......so far I am not pleased with the results,....but tomorrow will be a new day.

Best of luck and don't give in. My brother in law had a lung transplant last year and was so near death we were all sure of the outcome. At the last minute he got a new lung and he is amazingly vital now. When I asked him how I should handle this HCM situation, he said, "Don't ever give up or give in". ... Not that you are anywhere near this........so I am using him as an inspiration for me. There is a solution to the problems, even if it takes awhile to find it. If it's not today, it will be tomorrow or the next day or the next. But it's there.

Bucky