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Sudden increase in symptoms. Why?

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  • Sudden increase in symptoms. Why?

    I was diagnosed with HCM about 5 years ago, when I was 25. My mom died at 37, was never diagnosed, but had heart problems shortly before her death (I was 14 and found her dead in her bed). I have no obstructions but a thickened left ventricular wall. I have a 2 year old daughter with a second due in two weeks. I got an ICD implanted in November last year to try to prevent my family from having to go through the same as I had.

    I never had any real symptoms other than a pounding heart when I played soccer and some palpitations. I have always lead an active life. Since half a year I'm taking 5 mg bisoprolol after trying 25 mg Toprol for a while.

    I got shocked by my ICD for the 1st time on Jan 11, because I tried to play soccer and my heartrate stayed above 150 bpm for more than a minute (since then the limit was adjusted to 180 bpm). I have a lot of panic and anxiety feelings because I think the device will shock me gain, but that slowly gets better.

    Since 4 weeks ago (after a long tiring business trip to Singapore) I have all kinds of problems. It started with having strange kinds of lapses and surges through my body when I tried to sleep. That changed to waking up in the middle of the night with my heart going 180 bpm (close to setting of my ICD). Since 5 days I get chest tightness, dizzyness, palpitations and SOB in the course of the day and yesterday I had to leave work early. Blood pressure and heartrate stays normal thoughout the episodes, 130/70 and around 60. Today I'm home because I can't handle more than half a days work.

    I would like to get some of your views on my situation. I hope it is not caused by my HCM but it has all the signs. I'm afraid for my career and my family life if this situation would last.

  • #2
    Re: Sudden increase in symptoms. Why?

    You say your new baby is due in 2 wks? Congratulations! For the sake of your unborn child, your safety, and for the rest of the family, call your doctor. Your OB doctor needs to be aware of these symptoms also. Remember that you are providing the circulation/oxygen to that precious little baby. If your circulation is compromised and that's what is causing your symptoms, the baby may not be getting the oxygen he/she needs. A rate of 150-180 is definitely too fast for you and baby to both get what you need. Please call your doctor and keep us posted. Linda

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    • #3
      Re: Sudden increase in symptoms. Why?

      HCMers just don't have the kind of stamina that others do and long overseas trip is very exhausting, usually dehydrating, and draining.

      if i were in your shoes, i would take a couple days off of work to give your body a chance to rest, (i don't mean stay in bed, just not deal with work stress. catch a movie, talk a nice walk, etc.). you may also not be drinking enough water. coffee and alcohol are really bad for HCMers, try and cut back or cut out.

      and absolutely call your doctor and get checked out. sudden changes like that always warrant a double-check to make sure nothing has changed on the inside.

      HCM is a very up and down disease. We all get episodes of feeling like crap and they tend to come and go depending on how well we are taking care of ourselves (which is hard to do when you travel).

      everyone's experience with HCM is different, but just because you've been feeling worse lately doesn't mean you will always feel like this. it does mean you need to see your doctor and get it taken care of.

      you can call the office if you need a referral to a specialist (which i can't tell you strongly enough to do if you are not already seeing someone the HCMA recommends).

      take care and keep us posted,

      s

      Comment


      • #4
        Re: Sudden increase in symptoms. Why?

        Originally posted by Linda
        You say your new baby is due in 2 wks? Congratulations! For the sake of your unborn child, your safety, and for the rest of the family, call your doctor. Your OB doctor needs to be aware of these symptoms also. Remember that you are providing the circulation/oxygen to that precious little baby. If your circulation is compromised and that's what is causing your symptoms, the baby may not be getting the oxygen he/she needs. A rate of 150-180 is definitely too fast for you and baby to both get what you need. Please call your doctor and keep us posted. Linda
        Linda - I think, although I am not 100% positive, that the poster is the daddy of the soon to be person, and not the mommy!
        Daughter of Father with HCM
        Diagnosed with HCM 1999.
        Full term pregnancy - Son born 11/01
        ICD implanted 2/03; generator replaced 2/2005 and 2/2012
        Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

        Comment


        • #5
          Re: Sudden increase in symptoms. Why?

          I thought so too, when I first read about playing soccer in Jan, but just couldn't be sure. I re-read several times, and wasn't sure. I didn't want to take a chance, so congratulations to Dad and you need to stay healthy to help Mom out with both little ones! Still symptoms that need to be checked, even if it's Dad. Linda

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          • #6
            Re: Sudden increase in symptoms. Why?

            Originally posted by Cynaburst
            Originally posted by Linda
            You say your new baby is due in 2 wks? Congratulations! For the sake of your unborn child, your safety, and for the rest of the family, call your doctor. Your OB doctor needs to be aware of these symptoms also. Remember that you are providing the circulation/oxygen to that precious little baby. If your circulation is compromised and that's what is causing your symptoms, the baby may not be getting the oxygen he/she needs. A rate of 150-180 is definitely too fast for you and baby to both get what you need. Please call your doctor and keep us posted. Linda
            Linda - I think, although I am not 100% positive, that the poster is the daddy of the soon to be person, and not the mommy!
            I also thought that Daddy was posting and that vanzachten doesn't necessarily live in the US. I thought a business trip to Singapore might be more local than for us here in the States.

            Either way, I agree with the other posters. Please see your doctor. There can be a lot of reasons that you are seeing an increase in symptoms, stress not being the least of these. I hope you feel better soon.

            Reenie
            Reenie

            ****************
            Husband has HCM.
            3 kids - ages 23, 21, & 19. All presently clear of HCM.

            Comment


            • #7
              Re: Sudden increase in symptoms. Why?

              I am reading this as Daddy is writing -

              I would suggest a full evaluation by an HCM specialist to evaluate the meds you are using and your ICD settings. Symptoms change from time to time, for the overwhelming majority they can be managed it is just a trick of finding what best manages YOUR symptoms.

              I will be back in the office on March 16 and would be happy to speak with you, although it sounds like that may be a busy week for you!

              Congratulations on the new baby.

              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


              • #8
                Re: Sudden increase in symptoms. Why?

                Sorry for the confusion but I'm indeed the daddy, my name is Eric. I live in Houston and I work for an engineering and construction firm. I have for my age quite some managerial responsibilities. I make regular business trips around the world. Therefore the sudden strong symptoms are a very unpleasant surprise.

                I have visted my cardiophysiologist several times in the last few weeks. I'm using an event monitor to register episodes and a bloodpressure meter. I have a dobutamine stress test scheduled for tomorrow morning that will hopefully tell us more.

                I have some questions I would like to get reactions on:
                1. At the moment I deal only with my cardiophysiologist (Baylor heart clinic). Should I be seeing any other specialist?
                2. Does anybody have the idea that the implantation of an ICD increases the amount of symptoms, e.g. due to the lead physically sticking into your heart wall?
                3. Does anybody have the experience that a betablocker just becomes less and less effective after a while?
                4. Does anybody experience a cyclic nature to the symptoms. Without any exertion I suddenly get short of breath and dizzy and after an hour or so I'm okay again, followed by another epsiode some hours later?

                Thanks very much for your help!

                Eric

                Comment


                • #9
                  Re: Sudden increase in symptoms. Why?

                  dear eric

                  cyclic is a little unusual. i would be logging them and your meals and your exercise and your general activities to see if you find any patterns/triggers.

                  baylor is a solid place, i know, but for HCM and your recent onset, you should think about cleveland or mayo as they are closest to you (and in the top two ).

                  congrats and take care,

                  s

                  Comment


                  • #10
                    Re: Sudden increase in symptoms. Why?

                    To answer two of your questions, I haven't heard of anyone having trouble with increased symptoms after an ICD caused by either the device or the leads and yes, lots of people seem to have to have more beta blockers over time. See the thread titled atenolol and verapamil (hope that's right) and you'll see some debate on this topic. I agree with Sarah, you might want to look into going to an HCM specialist. You can give Lisa a call, her # is at the bottom of this page, and she can help you decide what would be best for you.

                    Reenie
                    Reenie

                    ****************
                    Husband has HCM.
                    3 kids - ages 23, 21, & 19. All presently clear of HCM.

                    Comment


                    • #11
                      Re: Sudden increase in symptoms. Why?

                      ERIC -

                      Man, I'm connecting with you right now. My name is Chris, same sort of situation. Mother died when she was 39, had a heart attack...but that didn't kill her...HEP C did.

                      I was diagnosed with HOCM in 1992. I was 14. They immediately put me on Beta-Blockers and I have been taking verapamil ever since. 2 times, I had to up my meds, to 240 and 6 years ago to 360mg. My 'personal theory' is that yes, your body can become dependent and even used to these amounts. The same concept as people tolerate things such as cigarettes, drugs, beer and such in completely inconsistant ways.

                      The other thing about the ICD. I reluctantly had mine put in. Only reluctant because I sparred heavily in Kenpo up until Feb 03 when they planted it in my chest and said NO MORE KICKS IN THE CHEST! Well, my quality of life has been changed dramatically. This 'insurance policy' well, let's just say it has only caused fear in my mind. I mean, all of a sudden now, this thing will pace me in the middle of the night. For about 6 months this happened and I had no idea it was pacing. Didn't even know that it could pace. I thought I was dying. Dying man, Dying. No way, I'm 26, Dying...NAH...not me..not now.

                      This thing plays tricks on you. I talked to the electrophysiologyist about it and she said, well your verapamil tends to slow your heart beat, and when your sleeping your heart and metabolism slow way down, so the pacemaker not knowing anybetter, (again i just realized this is an ICD with pacing ability) paces you.

                      Well, also, being an avid runner, I told her that she had no choice but to up the parameters to 180 bpm on the ICD. I've been shocked once, which apparantly was two weeks after it was implanted, thought i was dying rushed to the hospital and they said they planned that one. Apparantly wasn't a very large shock, but enough to get my attention. Yeah, nice joke doc! Guess it works though.

                      I'm starting to come around, sometimes Eric, I think the symptoms are worse...sometimes I wonder if it is just in my head.

                      Chris

                      Comment


                      • #12
                        Re: Sudden increase in symptoms. Why?

                        Chris and Eric,
                        you do you have a great deal in common do you? I'm sorry for the losses both of you have endured and I hope this message board has allowed you an opportunity to heal in some small way.

                        Eric by my calculations the baby should have been born around now, our things going? I am back in the office and would like the opportunity to speak with you to please give me a call on Tuesdays or Thursday's

                        Sincerely,
                        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

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