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bennett Find out more about bennett
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  • i have a question

    Does anyone get tightness in the neck when ya walk it feels like ur head is going to exploade i am also wondering if anybody else gets lots of wind traped if it makes them sick aswell is theere anything different that might help give me advice
    im 20 years old with hcm and just been told i need a heart transplant

  • #2
    Re: i have a question

    Dear Bennett,

    Welcome. FYI: there is cardiomyopathy.org that is UK based and they can help with finding HCM specialists in the UK if you don't have one yet.

    I don't have the symptoms you experience but it is unlikely you are the only one. What does your doctor say?

    I'm glad you found us. Please let us know how you are doing.

    Sarah

    Comment


    • #3
      Re: i have a question

      Bennett ,

      This does happen to me to a less degree since my myectomy a year ago but I have noticed it increasing of late. I do not tolerate much walking for multiple reasons and the neck pressure increase is one of them. I can not raise my arms over my head for more then a few seconds as it gets very tight in my neck and feels explosive . There are many symptoms that come on when the heart of an HCM person is put through the paces. The increase demand results in a rise in pressure and added pressure in the neck veins. I imagine these symptoms back off when you back away from the activity that is bringing it on? Additionally when extra fluid pounds are an issue this seems to increase the neck vein problem more frequently. I also tend to get rather stuffy nasally from the whole ordeal.

      You truly are not alone.

      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


      • #4
        Re: i have a question

        I just wanted to add the link the the UK cardiomyopathy association.

        http://www.cardiomyopathy.org/

        Reenie
        Reenie

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

        Comment


        • #5
          Re: i have a question

          Yes, I've felt that very same feeling before. It was sometime last year and all of a sudden my head felt very heavy, almost as if I was having a stroke or my blood pressure was extremely high. After the episode, my pulse took off to about 180 bpm and I went to the ER only to find that nothing had happened to my brain. An EKG was done that showed an "old heart attack" but I've always had weired EKG's.

          It's just one of those weird symptoms... To this day I don't know what happened.
          I cannot fear death, because when dead, death does not exist. Love is the reason for being, it can never be taken away nor lost, so hold on I will, and in death I will not part, but rejoice for the time I’ve had with you.

          Comment


          • #6
            Re: i have a question

            .Hi Nigel,
            HCM will show up on an EKG for many people as a heart attack - but ‘it ain't necessarily so’. (A song your parents or grandparents might remember.)

            Until you have a complete work-up by HCM savvy Cardio's and staff, keep your heart attack conclusions open to interpretation.

            See, something to smile about.
            Burt

            Comment


            • #7
              Re: i have a question

              Nigel,

              I do get the tightness in my neck quite often. When that happens, my arms and legs feel heavy, and I feel short of breath.

              I think this is all just part of HCM...?

              Debbie

              Comment


              • #8
                Re: i have a question

                Originally posted by Debbie
                Nigel,

                I do get the tightness in my neck quite often. When that happens, my arms and legs feel heavy, and I feel short of breath.

                I think this is all just part of HCM...?

                Debbie
                errr hello this isnt nigels forum
                im 20 years old with hcm and just been told i need a heart transplant

                Comment


                • #9
                  Re: i have a question

                  Sorry about that Bennett,
                  I kind of thought you had your answer in the postings before we ran off with Nigel. I think you’ll find a thread will often wander from one crisis to another. No disrespect intended, it’s just that we often feel the need to voice our opinions on postings subsequent to the initial one.

                  If you have further questions or comments, by all means speak up. We are rather casual as to what happens, but we do not want to leave you, or anybody, hanging with unanswered questions.
                  Burt

                  Comment


                  • #10
                    Re: i have a question

                    thats good to no bert .and thanks
                    im 20 years old with hcm and just been told i need a heart transplant

                    Comment


                    • #11
                      Re: i have a question

                      Sorry Bennett,

                      My mistake.

                      Debbie

                      Comment


                      • #12
                        Re: i have a question

                        I'm lost, all I heard was my name. Did I do something wrong? If I need, I'm sorry.

                        But anyway, that feeling really is horrible. I think you should try moving a little slower Bennett, that helps me. Also when I'm really short of breathe and my head feels funny, I always suck on an ice cude. It works, I don't know why....

                        Hope you're feeling better
                        I cannot fear death, because when dead, death does not exist. Love is the reason for being, it can never be taken away nor lost, so hold on I will, and in death I will not part, but rejoice for the time I’ve had with you.

                        Comment


                        • #13
                          Re: i have a question

                          Nigel,
                          Yes that post was a little confusing , Bennets comment that is . It took good ole Burt to figure it out for us. I believe Bennet was just commenting that it was his thread. Burt pointed out that many times what starts out as one topic and someones thread becomes something different and off to another topic. We here on the board tend to digress easily and often get derailed in our focus. Seems we always get back to the focus sooner or later and make everything perfectly clear. I like to think of it as we are painting many pictures and setting the scenes. It is funny how this happens a lot. So to answer your question , No you did not do anything wrong we all just jumped over to another idea for awhile.

                          New members just have to get used to our style. We also do not tend to stand on too much formality.

                          Does this explain ?

                          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


                          • #14
                            Re: i have a question

                            About the ice cube, I dont' know the whys of it all, but I know that when I used to have trouble with SVT the doctors would ask me if cold drinks affected me. They never did, but apparently they do some people. Sarah here at the HCMA says she always drinks room temp drinks.

                            Reenie
                            Reenie

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

                            Comment


                            • #15
                              Re: i have a question

                              I believe the ice cube thing is in regards to the vasal vagal nerve stimulation. The vagal nerve which runs across the diaphragm and is triggered by different mechanisms. The vagal nerve can cause a change in heart rate and as some of us are very sensitive to changes it has been known to influence onsets of A- Fib. Other arrythmias therefore are reactive as well or should I say have the potential to trigger.

                              The vagal nerve is always a concern when some individuals have persistant vomiting or they have bouts of continuous hiccupping ( sp?). When a woman is in labor lying on the left side could drop the BP&P for same reason( diaphragm gets pushed up triggering the vasal vagal response). Many people pass out when they get up too fast , the diaphragm again gets pushed and boom , BP drops , person passes out.

                              There are many more but to get back to it , the ice cube or iced drink theory is on the money and users should use caution.

                              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

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