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Feeling Tired and Lethargic

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  • Feeling Tired and Lethargic

    Hi,

    I hope some of you can help me with my question.

    I was recently diagnosed with HOCM, after I visited the doctor to find out why I might be feeling tired, almost hungover, every day - no matter how much sleep I get. I had lots of tests and visits to Cardiologists, but at the end, did not find out anything about my original problem!

    I have heard that these symptoms could be related to the heart condition, but do not know anymore.

    I was hoping somebody here may feel the same, or know someone who does, and have any information they could provide me with?

    Thanks in advance,
    Max

  • #2
    Re: Feeling Tired and Lethargic

    Hi Max and WELCOME!

    HCM can cause everything you are explaining. It is part of HCM, the fatigue that is. Many people with HCM have the same issue, I am sure some will comment here and tell you that your not alone.

    If your obstructed you will want to first try to max. your meds and see if you get revief that way - if not septal reduction may be in order. The most important fact is that you have options and your in the best place to learn about them!

    What dose of meds are you on now?

    Be well,
    Lisa
    Knowledge is power ... Stay informed!
    YOU can make a difference - all you have to do is try!

    Dx age 12 current age 46 and counting!
    lost: 5 family members to HCM (SCD, Stroke, CHF)
    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
    Therapy - ICD (implanted 97, 01, 04 and 11, medication
    Currently not obstructed
    Complications - unnecessary pacemaker and stroke (unrelated to each other)

    Comment


    • #3
      Re: Feeling Tired and Lethargic

      Hi Lisa

      Thanks for answering.

      I'm not on any medication at the moment, I wasn't prescribed anything after the tests and visits, but that is probably a good sign!

      I've been noticeably feeling a bit tired etc.. for 3/4 years, so I went to see the doctor. She gave me blood tests and also managed to get my medical results from the immigration department (which showed the condition, thanks for telling me guys). My blood tests were fine, and the cardiologist wasn't very helpful about my tiredness, so I didnt get actually get any help!

      I should probably go back to see the Doctor, though I thought I might try to get a more informed opinion first!

      Thanks again,
      Max

      Comment


      • #4
        Re: Feeling Tired and Lethargic

        Max, when you go back to the doctor, make sure your going back to an HCM/HOCM specialist, sounds like you doctor is not up on the condition.
        Not all Cardiologists are HCM smart.
        Call Lisa she maybe able to put you in touch with an organization in Australia.
        Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
        So if you are capable of thought then you are capable of great things
        Good luck and stay well.
        Glen

        Comment


        • #5
          Re: Feeling Tired and Lethargic

          Hi Max,

          I am one of those that thought I would comment that you are not alone in the fatigue department. It seems to be a daily battle at times and the word 'hungover' is the same one I've used to describe it to others. I had a septal myectomy in August 2002 and some of the day-to-day fatigue has left but I still find after 'high energy' days that I'm tapped out. (My mitral valve is leaking so it contributes to my tiredness as well.) Sometimes there's no explanation at all (in terms of activity level) - it's like the mystery symptom with no rationale. When I'm frustrated with it sometimes I try to remember (if I'm awake enough - ) that the heart is always working harder in those of us with HCM and additionally if you have an obstruction - just never quite enough blood flow getting through the heart.

          Learning to 'balance' my activities and increasing my water intake daily has helped me some. I hope you get some relief soon!
          All the best,
          Lynn
          Lynn Stewart
          HOCM 4/2002
          Cleveland Myectomy Crew 8/2002

          Comment


          • #6
            Re: Feeling Tired and Lethargic

            Hi Max, I can certianly agree to feeling excessive fatigue also. Like Lynn said activity leaves you tapped out. Many rest periods while doing and recovery time after is a must . Sorry it is not very fun not being able to match our peers and often we feel out of sinque . Just part of the heart condition. Take Care, Pam
            Dx @ 47 with HOCM & HF:11/00
            Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
            Lead failure,replaced 12/06.
            SF lead recall:07,extracted leads and new device 2012
            [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
            Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
            Genetic mutation 4/09, mother(d), brother, son, gene+
            Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

            Comment


            • #7
              Re: Feeling Tired and Lethargic

              Hello Lynn,
              How is your Mitral valve leak rated, minor- moderate or severe?
              I just found out that my Mit. regurg. which used to be mild is now moderate to severe, and I don't know how it changed.
              I am going to Mayo in a month to get a detailed evaluation.
              I do have symptoms of SOB with little physical activity. But it is strange, the symptoms are there once in a while and a lot of times, I don't even notice anything.
              I have HCM, but it is not obstructive and my septal thickness is 22mm to 26mm depending on who measures it and when.
              I am anxious to find out if any thing can be done for Mitral leak. If I am not obstructive, can any septal reduction help with MR?
              It would be an interesting visit to Mayo.
              Thanks
              Ketan Thanki

              Comment


              • #8
                Re: Feeling Tired and Lethargic

                I would recommend a specialist at this point... not being placed on meds is not the "good news"...nor is it "bad news". I think you would benefit from a specialist...surprisingly you may get more energy if you were on meds!
                Must run...
                BUT MUST SAY what wonderful, well thought out responces you have all given to Max...I am so proud of all of you!

                Mama bear
                Lisa
                Knowledge is power ... Stay informed!
                YOU can make a difference - all you have to do is try!

                Dx age 12 current age 46 and counting!
                lost: 5 family members to HCM (SCD, Stroke, CHF)
                Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                Therapy - ICD (implanted 97, 01, 04 and 11, medication
                Currently not obstructed
                Complications - unnecessary pacemaker and stroke (unrelated to each other)

                Comment


                • #9
                  Re: Feeling Tired and Lethargic

                  Wow - Thank you all for your comments! Fantastic.

                  You are right about the doctor, she is just a GP so may not be fully up with HOCM. I think I will see if I can find a specialist in Australia and try to find out if I can get some sort of treatment.

                  Once again thanks - I think I may start marking regular visits here!

                  Max

                  Comment


                  • #10
                    Re: Feeling Tired and Lethargic

                    Max -we hope to see you here often. We really have a nice little community here!
                    Please make use of the rest of the board...the jokes are always a blast to check out!
                    Lisa
                    Knowledge is power ... Stay informed!
                    YOU can make a difference - all you have to do is try!

                    Dx age 12 current age 46 and counting!
                    lost: 5 family members to HCM (SCD, Stroke, CHF)
                    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                    Therapy - ICD (implanted 97, 01, 04 and 11, medication
                    Currently not obstructed
                    Complications - unnecessary pacemaker and stroke (unrelated to each other)

                    Comment


                    • #11
                      Re: Feeling Tired and Lethargic

                      Hi Ketan,

                      My apologies for the delayed response to your questions on my MR!

                      Right now on a scale of +4 (1 being least severe to 4 being the most) my leak is at a +2. Here's my story, I had an obstruction which was causing the original mitral valve leak but with the myectomy that went away. However, unexplainably, a couple of months post op I developed the leak. Originally on the 2D echo it appeared to be a +3, a rating that possibly indicates surgery (+4 is usually a guarantee of a surgery to repair or replace the valve). After conducting a TEE (transesophageal echo) it was rated at +2. Fun huh? HA!

                      I'm not sure how the leak does progress, or rather why it does. The only thing that makes sense to me is to think of it as 'valve disease' separate from the HCM. It's great that you're headed to Mayo for a full work-up. It is your best, next step to take.

                      As for the septal reduction impacting the MR: I would not expect it to have any effect. If the valve is leaking without being caused by an obstruction then it is the valve itself that needs work. Valve surgeries are done quite regularly, although if I could I would still stick with a speciality center like Mayo, and they usually attempt to repair the valve if possible and then replace it if need be.

                      I too find that my symptoms come and go. Sometimes I think it's how I feel overall that impacts me, the more tired I am to begin with prior to activity the more likely I am to be symptomatic.

                      If you feel like it, I would love to hear how your trip to Mayo turns out! Let me know if I can answer anything else!
                      All the best,
                      Lynn
                      Lynn Stewart
                      HOCM 4/2002
                      Cleveland Myectomy Crew 8/2002

                      Comment


                      • #12
                        Re: Feeling Tired and Lethargic

                        Thanks a lot Lynn...
                        I will let you know about my Mayo trip..
                        My local Dr. did suggest a TEE. But then he said if I am going to Mayo, they will do it again anyway.. so he decided not to do it now.
                        Thanks again...
                        Ketan Thanki

                        Comment

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