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  • Frustration

    [Frustration]

    Author: Martha (---.eonet.net)

    Date: 06-19-02 19:34

    I was diagnosed with HCM about two weeks ago. I wrote the message board the first week after I got home. Since that time I visited a doctor here in my home town. My one real symptom has been my heart racing and what I thought was

    asthma. In the hospital they prescribed Cardizem. I have had a few bouts with

    my heart racing since I got home. When I told the doctor here in my home town about the racing heart and that it happened many times while I was asleep. It wakes me up. He gave me xanex to "help me sleep". Well, I'm sleeping really good!! I can almost sleep right through my heart racing episodes. At the same time all this happened, I had taken a new job ( part time) that has ( and will )

    be a challenge for me. The money is great, the working conditions are great, the

    stress is NOT great! I'm so tired I can barely make it 4 hours a day. I mean TIRED , TIRED!!! I don't know if it's the Cardizem, the Xanex or the heart problem.

    I don't know if I'm just being a weeny and trying to weasel out of my new job situation and to make matters worse my husband's comment is, that I'm just

    "FEARFUL and I should get over it." He says I wasn't this tired when I went into the hospital, so what's wrong with me, unquote. I know the two weeks before I ended up in the hospital I was feeling really bad. Heart racing HOURS at night and some in the daytime and getting more and more tired. My husband thinks I'm just a wimp. The cardiologist that gave me the Xanex said I should use my family doctor if I wanted more because that wasn't his line..... whatever that meant but I don't have a family doctor here so I know if I call him back, he's just going to say stop taking it. ooooooohhh good grief. Sorry to dump on you guys but I just want to know how some of you feel. Do you feel tired? Am I just being paranoid? Part of it has got to be depression too. I would appreciate just hearing from some of you. Thanks

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

    [Re: Frustration]

    Author: Dora (---.proxy.aol.com)

    Date: 06-19-02 21:29

    Hi Martha,

    I am not going to say to much except most of us get really tired. And are you aware that xanax is very very addictive.

    Dora J.

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

    [Re: Frustration]

    Author: Board Moderator--Sarah Beckley (---.dsl.mindspring.com)

    Date: 06-19-02 23:26

    Dear Martha

    I'm very sorry your husband is not being supportive of your situation. Please call the HCMA office tomorrow morning at 973-983-7429 to get the names of some HCM specialists for you to see. Your tachycardia (racing heart) should not be ignored (or covered up with Xanax) but treated properly which it clearly is not. You are probably tired from a combination of heart arrhythmias and the Xanax and stress and so on.

    The sooner you see a "real" doctor the sooner you will get some real treatment that can make a difference in your quality of life (and get hubby off your case).

    keep us posted,

    Sarah

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

    [Re: Frustration]

    Author: Dora (---.proxy.aol.com)

    Date: 06-19-02 23:31

    Hi again,

    Sorry I was so short last time but my husband was getting ready for work. You can find more information on Xanax by going to Drugstore.com and then typing Xanax in the Search space. I was on Xanax for anxiety attacks. You can look up most drugs by going to Drugstore.com and you can also do a check to see if any of your medications work against each other.

    My husband takes Trazadone and my son takes Zyprexa to go to sleep. Xanax and Trazadone are a type of Antidepressent. Zyprexa is used for certain mental disorders. My son is ADHD. But they can be used for other things as well.

    Dora J.

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

    [Re: Frustration]

    Author: Pat M. (---.tellico.net)

    Date: 06-19-02 23:42

    Hi there, just a line to let you know you are not alone. How about suggesting a referel for a sleep study ? You might need a Cpap. I am going throught this myself right now. I would wake with loud pounding heartbeat, come to find out my O2 level was 66 and normal is 98%. I am scheduled for the Cpap part of the sleep study in a month. Until then I was put on 2L of O2 at night when I sleep. It's a great help. Hope you feel better. Pat M

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

    [Re: Frustration]

    Author: Mary (---.proxy.aol.com)

    Date: 06-19-02 23:51

    My biggest problem at night is atrial fib. It usually wakes me up, or if I'm sound asleep it shows up in my dream (seriously). The tiredness seems to be so consistent with folks with hcm, it's hard to calculate. My first symptoms (besides pneumonia that wouldn't go away) were constant tiredness, but since I was pregnant when diagnosed I put it down to that.

    I've just learned to rest--no matter what--when I'm tired. If I do too much I pay for it in loads over the next few days. I don't know what causes it more, the meds or the disease, but I know that even through different meds I'm still constantly tired.

    It helps though that I'm on disability, so don't have the added stress of work. Do have to deal with a teenage daughter, which is worse than most jobs I've had (BIG sigh).

    Good luck. Force yourself to sit or lie down when you can. Try to ignore hubby and others who just don't know yet how the disease will probably affect your life.

    Mary

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

    [Re: Frustration]

    Author: Patricia Grall (---.dwave.org)

    Date: 06-20-02 08:52

    Hi Martha:

    Keep in mind all new jobs are stressfull. As you become more comfortable with your work you will enjoy it more. For now, the learning process will make you very tired. You need to try to keep the job, if you like it and plan your afternoons off better. Try to think of the whole week ahead of you and plan your home duties accordingnly. You need to learn too pace yourself during the day. This way you may be able to take a short nap each day and be freasher when that man of yours comes home. My husband was the same way in the begginning, but he softened up as we both became more educated about the medications and HCM. Many of the heart medications can make you tired. When you pick up the cardizem the next time, show the "drug printout" to your husband. A side effect is fatigue. Slowly keep talking to him about your problems when he is in a good mood, or when you are in the car. (he can't get away). Ask him for his help and to be more understanding. I actually found my husbands attitute helpful. It helped me try harder and not give into the fatigue, but to plan my daybetter. ( but I also keep educating him, sweetheart that he is.)

    I truly agree that you should not take the Xanax for any lenght of time. It is very addictive. Listen to Lisa and Sarah and get a new doctor that will help you properly.

    Also when you can't sleep at night, just try to relax and try tojust enjoy this time of thinking. Try not to let it irritate you. I promise you, if you try this, you will find you will get good at it. Many a night I do not sleep well at all and I still function very well the next day - because I do not let it get to me. I just lay there ( toss and turn alittle) and rest my body, trying to think about nicer things. Usually by the third or fourth night, my body knows it needs a good nights sleep and I sleep like a baby. I function great this way because I refuse to let it make me worse. If I am tired, or "in my window" I go to bed at that very moment. I break my normal bedtime routine because I know if I go to bed I will fall asleep. Listen to your body. Learn to pace yourself and take naps when you can. If you must use a pill once in a while, ask your new doctor about the "Over the counter" Benadyrl. that my help. But, as with any sleep agent you should not use it ever night, or it may loose it's efffect.

    You can do this. Take good care and good luck!

    Paricia Grall

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

    [Re: Frustration]

    Author: Board Moderator--Sarah Beckley (---.dsl.mindspring.com)

    Date: 06-20-02 11:21

    Dear Martha

    You should NOT be in atrial fibrillation. Cardizem is clearly not keeping you in rhythm and there are medications to try that are designed to do that. Furthermore, if you are going in and out of atrial fibrillation and are not on a blood thinner, you run the risk of having a stroke (and also a heart attack).

    PLEASE call the office immediately so we can get you some proper treatment.

    Thanks

    Sarah

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

    [Re: Frustration]

    Author: Lisa Salberg (208.47.172.---)

    Date: 06-20-02 12:58

    Hello all,

    Great advice on this line - I will echo what Sarah said re NOT covering up your symptoms with the Xanax - franlky, that is out right scary to cover up symptoms by attemping to sleep through them. Let us help you find an expert in HCM to help you get a handle on managing your symptoms and to ensure you are getting the proper treatment.

    set up an appointment with the HCMA and we can talk more - help us help you...

    I look forward to speaking to you.

    Lisa Salberg

    HCMA

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

    [Re: Frustration]

    Author: Martha (---.eonet.net)

    Date: 06-21-02 00:09

    I appreciate so much your responses. I know it's said everyday how good it feels to have someone that knows what you feel, etc. but it really is such a comfort.

    Thank you, all of you that have sent messages to the board.

    Thank you

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

    [Re: Frustration]

    Author: stephanie (---.proxy.aol.com)

    Date: 06-28-02 00:05

    I know exactly how you are feeling. I am 18 now and when I was first diagnosed with HCM is was 15. The doctor put me on atenolol which for the first 5 or 6 months did nothing but drag me down. I know how frustrating it can be to have this feeling of fatigue all the time and it's like no one around you understands. Just trust me when I tell you eventually your body gets used to the new medications and you too will get used to the fact you have an illness.

    stephanie

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    [Re: Frustration]

    Author: Martha (---.eonet.net)

    Date: 06-28-02 08:25

    I appreciate all of your responses. It's so good to know others that are dealing with the same problems! My 'wonderful" cardiologist has changed my

    'sleeping pill' to Paxil. I called and told him I was continuing to have bouts with my heart racing, shortness of breath and mild chest pain, mostly at night and

    he changed my sleeping pill!!!!!!!!!!!! O.k.....My daughter is calling the cardiologist

    in Dallas that discovered my problem. He seemed quite knowledgeable about HCM and in fact called interns and a few of his friends who were in family practice to view my sonogram and chem stress test so they could see a "classic case of HCM! I was a celebrity for a day! ( Not that I wanted to be that kind of celeb! haha)

    My new job is must more stress than I can handle right now. I've battled with whether I needed the good pay or wanted to live! Guess I'll try to live a little longer!My husband still thinks I'm a wimp but he's more understanding than he has been.

    Also, my daughter mentioned last night one thing I didn't hear the doctor say, something about if this medicine didn't help...... some kind of surgery. I've been reading all the messages and there are some mentions of other procedures and

    letters that I don't understand. What's an ICD? I guess I just need to learn

    more about what's happening inside me so I'll be able to 'help' the doctors. I don't see many people mention Cardizem.

    Stephanie, you're a brave young lady! Thank you for the encouragement.

    Thank all of you for 'being there!"

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

    [Re: Frustration]

    Author: susan (---.180-140.vldsgacbds.dial.optilinkcomm.net)

    Date: 06-29-02 01:52

    hi martha

    just to give you encouragement. i was diganosed with hcm at age 19 after my father died at age 43 with hcm, back then called ihss. there are many doctors out there that will tell you its all in your head. i had one like that until i got pregnant with my first child. my obgyn and my internal medicine doctor did alot of reasearch on the desease. yes i was aske if i wanted to have an abortion, the thought, no stressed that being pregnant was life threatening. i choose to have my son. as a matter of fact i have two children now and am 36 years old. its hard for people who don't have this disease to understand how you feel. they can't understand why you get tired. i still don't understand why i get tired. i will say this. i tried drug therapy, i had a pacemaker implanted and i have had the alcohol ablation, i know i spelled that wrong. as a matter of fact i was one of the first 14 people to have this surgery in the united states. it has improved much with time and research, i see my specialist once a year and he checks on my heart and makes sure its doing its thing. like beating.a back when i had my surgery they had a research fund that paid for it. i had it done in houston texas, medicaide does not pay out of state so that was a releaf.. ack my spelling is horrible. since then i was told to file for disablity and i now i have medicare which i thank God for every day. without it i don't know how i would survive. that and the support of my family keep me going. my sibilings think i am lazy but i have a wonderful mother who is an RN who is totally supportive, but even she gets tired of me telling her i am tired at times.all i can really say is that with time you get used to dealing with it. i still have chest pain and breathlessness, and i get dizzy when i stand up, but you can either deal with it or let it get you down. the support of a great doctor helps helps alot.. the support of your family helps more. don't ever let anyone tell you its in your head. its not. keep the faith, there are many things you can try, and you can have a almost normal life. the tiredness bothers the most out of all the symptoms. good luck on finding a wonderful doctor, it will make a great difference.

    susan

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

    [Re: Frustration]

    Author: Sarah B-Board Moderator (---.proxy.aol.com)

    Date: 06-29-02 02:15

    Dear Martha

    It is very clear that you need to be seeing an HCM specialist. If you call the office at 973-983-7429, they can hook you up with someone.

    To answer your questions...

    First, there are a LOT of medications out there and you don't want to jump straight into surgery without trying a few different things. It is a big step and can't be "undone" if it doesn't work. Paxil --I've heard nothing but bad things about it. And Cardizem is not drug of choice for HCM. Most people respond really well to a beta-blocker (Corgard, Tenormin, Toprol, etc).

    Second, there is a surgery called a myectomy that cuts away the muscle that is blocking the mitral valve from working properly (assuming you have extra muscle there --only 20-25% of HCM patients do). There is also a procedure called an ablation (and there are several types) that kill small parts of the heart to block the errant misfires that cause the arrhythmias to follow the right path (literally) across the heart and beat normally.

    ICD stands for implantable cardioverter-defibrillator and it is a small device they put in your chest and if your heart goes into ventricular tachycardia or v. fibrillation, then the ICD shocks your heart back to normal. It may also be set to fire for atrial fibrillation as well. THere is a specific set of risk factors you need to meet to qualify for an ICD.

    HOpe this helps. Please see a specialist and stay away from Paxil-man.

    Sarah

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

    [Re: Frustration]

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

    Date: 07-01-02 18:25

    Martha -

    Looks like your getting a great deal of input, and good advise from many.

    Keep your attitude possitive and get to doctors who can help you improve your quality of life.

    Best wishes,

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

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