If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

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    [newbie]

    Author: Wade (---.blumtn01.pa.comcast.net)

    Date: 10-29-02 00:37

    Hello... My name is Wade, I just found this website in a search engine and have been browsing for a while. Here's what brings me here:

    About 4 months ago I was running home from the grocery store down the street to get out of the rain. I got about half-way home and I suddenly started feeling 'light-headed' and stopped to catch my breath. I blacked out....it was night time and no one was around, so I'm not sure how long I was out for, but when I came to I called a friend to take me to the ER. They found nothing obviously wrong with me except the doctor let me know I had a heart murmor.

    I saw my PCP who refered me to a cardiologist for some testing, and long story short - he believes I have HCM. Since my initial consultation a few months ago I have been laying off strenious activity as he advised...I have had episodes of light-headedness after excersion in the past. Other than that I feel fine during my day-to-day routine. I am currently on beta-blocker medication and will have another Echo test in a few months...my septum measurement was 2.4cm. I've seen many, many recommendations here about seeing a specialist to all new posters, but since I haven't had any real 'symotoms' (I feel fine 99% of the time) - I personally haven't given it serious consideration.

    I'm in my late 20's and I guess here's my question... there is alot of talk in this forum about sudden-death, surgeries, implantation devices, and the progression of the disease -- Obviously these kinds of discussions are an attention grabbers for a newbie like me. I mean no disrespect to anyone here, but are these symptoms/treatments typical for all HCM patients? I seams from reading these posts that what I have to look forward to is very grim, at best.

    Thanks in advance for any advice you have. There are obviously many people here that have dealt with a lot of pain and loss because of HCM. I wish you all the best, and offer my consolences to those who have lost loved ones.

    Thank you,

    Wade

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: newbie]

    Author: Wade (---.blumtn01.pa.comcast.net)

    Date: 10-29-02 01:03

    Sarah - thanks in advance...I just saw your reply to a post earlier tonight that pretty much answered my concerns. Brody(sp?) is right, worrying about it won't help, but we still need to come to terms with the BIG news that we are now (at least) physically limited. Brody - this is what has been the hard part for me over the past few months...accepting that I have limitations I'm not used to having. From your post it sounds like this would also be tough for your son. But in reality, I can FEEL when I over-do it. Funny how your body lets you know...

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: newbie]

    Author: Sarah B.-Board Moderator (---.client.attbi.com)

    Date: 10-29-02 01:20

    Dear Wade,

    Welcome to the club you didn't want to join!

    Are you doomed? NO! You will find that people with more severe problems are the most likely to post, so you don't get a representative sample of the entire HCM spectrum here. The majority of HCMers live a full life span (barring cancer or other diseases, etc.) It actually breaks out to about 20% have atrial fibrillation, 20% need ICDs, and only 1-2% die suddenly each year --of the total HCM population.

    HOWEVER (and this is a BIG however), in order to make sure you are not in that 1-2%, it is in your best interests to walk briskly (not run) to the nearest HCM specialist. Regardless of your symptoms or lack thereof.

    Here's why: even the majority of doctors don't understand HCM and/or are using outdated info. PCPs are seeing maybe 1-4 HCM patients in their whole practice, if any and the research is advancing very quickly. AND HCM varies substantially from patient to patient. It is genetic and has about 10 strains. Everyone's progression is different--even within families.By the way, your parents and siblings should be screened asap (ecg and echos).

    The fact that you fainted, that you are in your 20s, and that your septum is very thick (1.0 is the most you would choose it to be), lead me to believe that you ___you____ regardless of how fine you feel, need to see a specialist. The fainting is a big red flag; you youngsters like to push yourself too hard; and if your septum is blocking the mitral valve, then you need to see about getting that fixed (I'm a really old 33 *wink*).

    ***Seeing a specialist will give you the best chance of continuing to feel fine.***

    If you become an HCMA member, you get the newsletter (research news, etc etc) and a book about HCM written by the preeminent doctor in the field and Lisa, our esteemed fearless leader. Even if you don't send the HCMA a dime, you can still call Lisa at 973-983-7429 and she will match you up with a great specialist.

    Oh --you should avoid the following to prevent palpitations/problems: decongestants, ephinephrine, ephedrine, caffiene, alcohol, tobacco, dark chocolate, heavy meals, and grapefruit and grapefruit juice (this last one --as well as the first 6--effect your medication's ability to work properly).

    take care,

    S

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: newbie]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 10-29-02 08:51

    Wade,

    Well if you have read other postings your likley to know what I am going to say... you should seek the opinion of an HCM specialist. You have indicated 1 risk factor at this point - you passed out. Now here is the key we do not kow why - was it a rythm issue or was it hemodynamic. THIS is important to know. You are young and most your age do not feel symptoms and yes you will likely have some as you age...but it is not really that bad, at least most days it isn't.

    Your septal measurement leaves no room for doubt... this is HCM. Are you obstructed? Do you have any family history - before you say no..THINK about your grandparents, aunts, uncles and cousins... many of you know that when I 1st ask this question most of you say "No family history of anything" then is the ever famous.."well there was uncle 'so and so' he had a heart attach at 39" or somthing like that...look at your family tree ask questions it is important.

    I again welcome you to the club you never wanted to join...but know we are here and we can help.

    Best wishes,

    Lisa Salberg

    President

    HCMA

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: newbie]

    Author: Edlyn (---.tstonramp.com)

    Date: 10-30-02 02:37

    Hi Wade:

    I have been reading alot of the medical literature regarding what are considered risk factors for sudden death. Syncope is a major factor and should be taken seriously. I myself, never realized that even if prevented by either sitting down or putting one's head down to get blood to the brain, it is still considered an episode. I always thought that one had to lose complete consciousness for it to be syncope. Frequency of occurrance is serious and should be followed by a specialist who has seen/treated many cases of HCM. Sudden death occurs even without symptoms and the trouble with the doctors who are not specialists is that they will negate the seriousness of this condition from either ignorance or arrogance. Your septum is in the moderate range and that too is another risk factor. Since what we have is a congenital heart defect with gene mutations, family risk factors may not always be conclusive as it is not fully understood when they may mutate and appear in which family members. Educate yourself (read, read, read) and follow the sage advice of the moderators of this board ...... get to a specialist (that is the single most important thing you will ever do for yourself, don't procrastinate). I for one am so relieved to have found this support group and to realize that this wasn't all in my head or that I had become deconditioned (I used to be an athlete long ago, when I could still breathe normally).

    Hang in there!

    Edlyn

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: newbie]

    Author: Wade (---.eds.com)

    Date: 10-30-02 18:38

    Thank you all for your relpies...your advice is much apprieciated and will be taken seriously...

    Thanks again,

    Wade

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: newbie]

    Author: Janessa (---.dialsprint.net)

    Date: 10-30-02 20:55

    Hello Wade and everyone else. I will introduce myself and probably address some of Wade's issues all with one blow: I was diagnosed w/hcm at the tender age of 19. I am now 31 with a septal thickness of 3.50. When I was diagnosed I was only1.40. I went my "whole life", or at least the past 10 years being 1.40 then from April 2001 to June 2001 went from1.4 to 2.7 to 3.5. I, too, passed out which led to my diagnosis through an abnormal EKG. My family was full of hcm'ers but now, sadly, only my daughter and I are left. All of them lost to sudden cardiac death. All at a very young age. My only aunt at age 48 (ten years ago). My mom at age 52 (11/11/2001). My cousin at age 28 (03/2002). There were others prior to them but I really didn't pay much attention because it wasnt in my backyard. My mom wasn't even diagnosed until 5 years prior to her death. My daughter is 4 and she was diagnosed in-utero, which was an amazing experience. I currently have an ICD/Pacemaker. I am ventricularly paced 100% of the time but due to my continued symptoms I believe the next step is the ablation which I've read about but still not too sure of. I have ridiculous palpatations in spite of the pacing, chest pain and alot of difficulty breathing sometimes I'd swear that I'm asmatic (they keep promising me that I'm not).

    I don't know Wade. I was pretty "normal" until 2001 and things just became really weird after that. Even with the pacer I have terrible episodes of tachycardia which lead to the passing out or near passing out episodes. I've passed out so many times that I can't keep count. NOW at the age of 31 I have had to give up my career and retire on disability. CAN U BELIEVE THAT??? I still can't. I'm too young, right? We have to play with the cards that we are dealt but 1/2 of the battle is knowing how to play your hand: NONE of my relatives took any preventive measures other than beta-blockers. I can't say what options they were given but my cousin and I had the same doc and I begged him to have the ICD placed. He didn't. By the way, in our family out of at least 6 relatives that have passed due to this disease, only one male.

    Honestly, I felt great (most of the time) after my diagnosis, did everything I wanted to do with an occasional passing out (or so I thought) and now I still do what I want I just do it alot slower. I am now able to tolerate excercising (only walking) but that is wonderful to me because I never could do that without great difficult. Whatever your hcm brings your way just stay on top of it and just like everything else, make the best of it.

    Ladies of the house (Lisa / Sarah) or anybody: Is there any connection to INSOMNIA and hcm or maybe it's the verapamil (beta-b) or atenolol ( My hcm has also given me the gift of mild hypertension) My doc is a little slow on this one and I haven't slept for days.(30 min to an hour every night) I'm exhausted and no matter what I try (over the counter and otherwise) NOTHING is doing it for me so I just started thinking that maybe something else is going on here. Thanks for being here, wish I'd known a long long time ago

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: newbie]

    Author: Lisa Salberg (208.47.172.---)

    Date: 10-31-02 14:13

    Janessa,

    Welcome to the board, and thank you for sharing your story with us all. Your family has been through so much and I am sorry to hear of your losses.

    RE the sleeplessness, I will have to look into in and let you know, I am not aware of anything off the top of my head that may cause this.

    Best to all,

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: newbie]

    Author: Wade (---.eds.com)

    Date: 10-31-02 14:45

    Janessa,

    I'll be 30 later this year...about the same age as when your symptoms started getting worse.

    Anyway, I have read in the past that there is such a thing as stress-induced asthma...and we all know stress can lead to insomnia. Just a thought - take care, relax, and thanks for sharing your experiences.

    Take care,

    Wade

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: newbie]

    Author: Janessa (---.dialsprint.net)

    Date: 10-31-02 23:46

    I have thought that maybe the stress of this whole disability thing may be the cause. Maybe I should look into Yoga, especially now that I have so much time on my hands (smile). Thanks for responding and Lisa let me know if you run across anything.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: newbie]

    Author: Pat (---.d00832.dlup.digitaldune.net)

    Date: 11-01-02 15:26

    Janessa,

    I was on atenelol briefly in the last month. I developed several side effects, but the one which caught my attention the most was that I awakened at night and could not go back to sleep. The literature talks about nightmares--as does Sarah. I didn't remember any dreams, but my being unable to go back to sleep "felt" like I was aroused as I would have been from a nightmare. As soon as I went back to metoprolol I started sleeping better.

    Had you had a drug change--either a new one or an increased dosage--before the sleeplessness started?

    Good luck!

    Pat

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: newbie]

    Author: Board Moderator (Sarah Beckley (---.client.attbi.com)

    Date: 11-01-02 15:39

    Dear Janessa,

    I'm so sorry about your family. It is a crime that your cousin wasn't given an ICD. I'm glad you have one now. Still, it probably wouldn't hurt to see a specialist from time to time, especially for your daughter. The HCMA can hook you up with those.

    Wishing you all the best despite everything,

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: newbie]

    Author: Jason (---.ushwy1.com)

    Date: 11-01-02 21:56

    Janessa, I have the same stupid problem with no sleep. I have changed my meds to late afternoons and have not noticed any difference yet. I wonder if there is a connection? Sorry for all your losses. I hope you will be ok. Jason, angry at HCM.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: newbie]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 11-03-02 16:03

    Jason,

    I think we are all angry HCM, the patients, the families, the doctors, the nurses, the technicians, the insurance companies, the employers, and everyone else that has HCM in their lives. I have yet to meet via the message board, e-mail, letter or phone call one person who has said "cool, I have HCM" I have yet to hear one person saying "I'm OK with this" or "I don't mind".

    Most days here on the message board we tried to put a positive spin on what is obviously a far far from positive place we find ourselves.

    Our dear friend Sarah has said to me on a number of occasions "I just want to stand in the middle of the street scream"... in her case I may be at the cable guy, the phone company or more likely the movers... but I think there are days when each of us want to do just that the.... Stand in the middle of the road and scream. I would not Suggest this manner of anger management as it could cost us each a small fortune in either bail money or confinement in a psychiatric Institute but it is the truth we are all angry, and it's OK to be angry, it just matters what you do with the anger.

    I do not mean to jump on a small comment that you made, but I think it is extremely honest... and I think it is good to say it out loud every once in a while.

    Thanks Jason!

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

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