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  • New to board - ?'s

    [New to board - ?'s]

    Author: Shayne (192.76.86.---)

    Date: 05-22-02 17:32

    I'm new to this website. I just found it. I'm a 32 year old male and have been diagnosed with HCM since I was 23. I had a pacer implanted at 25 and a myectomy at 28. I'm still symtematic. I have shortness of breath when I get hot and when I walk stairs. I currently take 100mg of Metoprolol (sp?) twice a day.

    My questions:

    I've read some info on this site about alcohol. I've never been told not to drink alcohol. What effect does it have on my HCM?

    Does anyone have to take as much beta blocker as I? I feel terrible if I don't have my evening dose.

    There's not very much info on the alcohol ablation. Any recommendations on that? Should I pursue that? What questions should I ask?

    Thanks for answering my questions!

    Shayne

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    [Re: New to board - ?'s]

    Author: mia (202.164.166.---)

    Date: 05-23-02 09:34

    hi. i also just recnetly found out about HCMA. i was diagnosed just 8 months ago and am symptomatic almost everyday especially after taking the stairs. living in a tropical country also doesn't help. i think the heat aggravate my symptoms. i haven't had any surgeries done and i am managed only on medications. i take metoprolol 100mg in the morning and 50mg in the evening. i also feel terrible when i miss my evening dose. i asked my doctor recently if there are any food or drinks that i can't take but he said that there is none. i don't know much about alcohol ablation either but i'll email you as soon as possible if i get any info about it.

    mia

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    [Re: New to board - ?'s]

    Author: Craig (---.dsl.sfldmi.ameritech.net)

    Date: 05-23-02 10:43

    Shayne,

    I am 31 years old, also take 100mg Toprol a day (As well as 5mg Norvasc, a calcium-channel blocker.) Here's what I have learned recently about alcohol and HCM.

    First, there is nothing definitive about it. There have been no studies, to my knowledge, of the effects of alcohol on people with HCM. Lisa explained that this is because when there are limited funds available for research, certain questions get studied over others. Maybe there will be a study in the future. This is important to keep in mind, because any doctoral advice needs to be placed in this context.

    That said, here's how Dr. Lever from Cleveland Clinic (an HCM expert) explained it to me:

    Alcohol can disturb the normal rhythm of your heart. For me, when I drank, I often had more palpitations. Others may experience other symptoms. Since the HCM heart is at a higher risk -- compared to the general population -- for potentiall life-threatening heart rhythms (Ventricular Tachycarida, for example), any alcohol can increase this risk even more. Dr. Lever also claimed that people with HCM were at a higher risk of having Atrial Fibrillation symptoms. Though I haven't seen any studies about this relationship, it makes some sense.

    While I am lucky to have very few symptoms with my HCM (really only occasional chest pain), I have chosen to follow his very black-and-white mandate about alcohol. He even said I should stay away from Non-alcoholic beer (which has trace amounts of alcohol in it.)

    One thing is certain: with HCM, few things seem to be black-and-white. This is why I have taken notice of Dr. Lever's very unambiguous recommendation about no alcohol.

    Personally, I don't think I have accepted the reality that I may never have a drink in my life again. It's a pretty nice, socially acceptable drug. But, as others have said, it is a small price to pay when considering the worst case scenario with HCM.

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    [Re: New to board - ?'s]

    Author: Shayne (192.76.86.---)

    Date: 05-23-02 13:12

    The reason I asked that, was that I've drank every now and then since I was diagnosed and have never felt any different before, during or after. I was on Verapamil(sp?) for a while and couldn't drink then, but he said that was due to the meds.

    My cardiologist talked about the alcohol treatment for awhile, but has kind of dropped it. I thought maybe there was some risks associated with it.

    I don't feel this disease has hindered my life too much. I can't run a marathon, but how many 32 year olds do.

    He wants me to get an implantable de-fibrilator, but says I can decide when on my own time. I don't have chest pain, palpatations, and only get dizzy when I over exert myself, so I'm putting it off for a few years.

    Thanks for the replies!

    Shayne

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    [Re: New to board - ?'s]

    Author: Glen (---.com)

    Date: 05-23-02 13:35

    Shayne

    I am 52 and was diagnosed over 30 years ago.

    Back then and until fairly recently I was never told not to drink alcohol probably because they just didn't know back then.

    Occasionally when I drank a lot such as at party I would go into A-fib for a couple hours, when I stopped it went away.

    I have gone into a-fib probably only a few times that I am aware over that 30 years.

    I asked my HCM specialist a couple months ago about alcohol and he was aware of the a-fib episodes.

    He feels a couple social drinks would not hurt based on my past history and that's what I do.

    However, I am sure you will get a couple responses on this posting from people who have a real problem with just one drink.

    I believe it really depends on the severity of your HCM, I am not obstructed and my thickness is not as severe as some others. I am also able to exercise moderatly.

    However if you at the point where they are talking about defribulators, then you may be more prone to the affects of alcohol.

    I would listen to you doctor.

    Good Luck

    Glen

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    [Re: New to board - ?'s]

    Author: sarah beckley -moderator (---.dsl.mindspring.com)

    Date: 05-23-02 13:56

    Hey, Guys---

    Alcohol ABLATION is a procedure where alcohol is injected into the heart muscle to relieve symptoms of HCM. Only an HCM specialist can tell you if you are a candidate or not. The stats are pretty good, but if you are not screened properly and it isn't done properly, it may fail or there is a tiny risk of dying on the table.

    Drinking alcohol is another thing entirely and should NOT be done by anyone with HCM. Alcohol dehydrates the body and this effects the electro-chemical balance of the heart system.

    MIA---there are foods you should avoid: dark chocolate, black tea, caffeine, and grapefruit (it interacts with a lot of heart meds). Nicotine and alcohol are no-nos. It doesn't sound like your doctor is on top of HCM, please call the office to find a specialist.

    Shayne--either you need an ICD or you don't. If you need one, you should get one right away. Please call the office at 973-983-7429 to get the name of an HCM specialist so you can get a second opinion on the ICD. There are a set of criteria used to determine if you are at risk for sudden death, and if you meet them, then you have no reason to wait for something bad to happen.

    Alcohol puts me in afib too, so I just don't drink anymore.

    Sarah
    NOTE: This is a post from the previous forum message board.

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