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

Announcement

Collapse
No announcement yet.

What is this symptom, please......

Collapse

About the Author

Collapse

Eileen2345 Find out more about Eileen2345
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • What is this symptom, please......

    Hi everyone, here is what happens............

    I'll get kind of lightheaded and then my heart will pound real hard and I can hear it in my left ear really loud. It only lasts a few seconds, but it is awful. I feel like my head is gonna pop off my neck.

    Does anyone else get this. This happened all the time when I was on Verapamil and I still get it but not as much. It was maddening when I was on the Verapamil.

    Thank you for any information.

    Hugs, Eileen
    49 yrs. old
    Diagnosed at 31.
    Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
    First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
    Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
    Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
    My brother passed away suddenly at 34 yrs old from HCM.
    2 teenage children, ages 17 and 15.

  • #2
    I used to feel this way when I had runs of atrial flutter. Ask your doctor if they've caught any of this on a holter monitor.

    Reenie
    Reenie

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

    Comment


    • #3
      Eileen,
      You need to be working with at the least your cardiologist and at best an HCM specialist on these matters. These symptoms are important and from everything we know about HCM you need to be medicated to relileve the stress from your heart. You may need to work with dose and which med is best for you - but MEDS will help to reduce symptoms.

      I am still at he ACC meeting - I can tell you that the more we are learning about HCM the more we are learning that obstuction is a massive stress on the heart and is not good in the long term for anyone.

      Please talk to your doctor ASAP.

      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


      • #4
        Eileen i get this too, from time to time i have brought to the attention of the doctor and he wrote it down and he said that is not a good sign and shortly i had surgery so you may want to take this up with a doctor, Eileen even if you have to make payments for the rest of your life going to a specialist works wonders and it will ease your mind, most of these center will work with you on whatever you can afford and i would find a doctor willing to work with one of the specialist locally, but as far as the lightheadedness now and the pounding it comes and goes but doc said it is not as dangerous now since i had surgery, i hope you get to a doctor soon i know you want to see those kids of yours grow up

        Shirley
        Diagnosed 2003
        Myectomy 2-23-2004
        Husband: Ken
        Son: John diagnosed 2004
        Daughter: Janet (free of HCM)

        Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

        Comment


        • #5
          Eileen,

          As Shirley and Lisa indicated, the symptoms you describe are most likely related to your obstruction, but nobody can tell you that for sure except your cardiologist or specialist. I experienced those same symptoms prior to my surgery, and i also had frequent pain in the left side of my neck because of the obstruction. I could always feel my heart beating in my head strong enough that i could take my pulse just by listening to it, and it was especially annoying that my eardrums throbbed away all the time.

          I've got some time today so i'll send you a PM and maybe we can chat about some of these things if you want.

          Please take care,

          Jim
          "Some days you're the dog... some days you're the hydrant."

          Comment


          • #6
            Hi everyone

            Here is the thing......

            I have applied for SSI. (I was a stay at home mom for years, so I did not put enough money into the system over the past 8 years. So no SSDI for me.)
            It will take months for them to get back to me. I may have to hire an attorney, I don't know, I hope not.

            But -- and this is a big But -- I would put money down and set up payments at Cleveland for a myectomy IF there was a guarantee that I would be better and that there were not other complications.

            However, I know that is not possible. There are no guarantees in life, especially with HCM.

            I could very well bankrupt my family and still have debilitating symptoms down the road. My heart could go into the remodeling stage or burn out HCM -- or not, maybe I would be better for 10 years -- there is no way of knowing.

            I have many "what ifs."

            What if I have complications and need more medical care?
            What if I need to be hospitalized because of complications?
            What if I feel better for a while and then start to feel bad again?
            What if it costs more than $50 or $60 thousand dollars?

            That is ALOT of money to take a chance on. What if I had complications and I ran up another $20 or $30 thousand dollars. I have my family finances to think of too.

            If I knew for sure that when I had the myectomy done that I would be healthier for 8 to 10 years, then I would call Cleveland tomorrow and make an appointment.

            But there is not way of knowing that for sure.

            So now I wait to see if I am disabled enough to get Medicare.

            Thanks everyone. I appreciate your input and your perspective and I welcome any additional comments.

            Hugs,
            Eileen

            P.S. I put in a call to Cleveland, the recording said they will call back within 2 business days. I'll see what they have to say.

            I am still waiting for a call from my cardiologist here in Phoenix for his take on my stress test. The results I got were from the techs.
            49 yrs. old
            Diagnosed at 31.
            Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
            First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
            Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
            Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
            My brother passed away suddenly at 34 yrs old from HCM.
            2 teenage children, ages 17 and 15.

            Comment


            • #7
              I just cannot take a chance on losing the family home on a 'maybe.'
              49 yrs. old
              Diagnosed at 31.
              Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
              First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
              Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
              Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
              My brother passed away suddenly at 34 yrs old from HCM.
              2 teenage children, ages 17 and 15.

              Comment


              • #8
                I understand where you are coming from Eileen and I feel very bad. I do not wish to scare you but have you also looked at the other column?

                "What are the results of not relieving an obstruction." ( I say this knowing you are already experiencing some severe symptoms that have you in ??? probably class III/IV heart failure?)

                If you get to that point where your heart is no longer able to sustain you without life support, are you prepared to tell your family you wish to be a "do not resuscitate." Or would you be on life support and the cost be astronomical as well until something could be done? Or your family is sadly left to decide to have the machines turned off. ( IF you have given health care proxy).

                You have a lot on your plate Eileen and those little ones need their mommy. If one of your children ( god forbid) needed something that costs more then you could concieve of , wouldn't you do it?

                I have a cousin who 's son was 5 when his liver failed from having 2 viruses at once. It was a miracle that they even got him a liver. It was not a match but miraculously either his liver or the donated one coverted. That 5 year old spent more then a year in the hospital. He is now 19 in college and a very intelligent and gifted young man. His parents had no insurance and his mom was able to get a job after he was home and she will never pay the bill off , it is more then a millon dollars still. Sadly this young mans father died in 2004 of cancer at 40 years old. He did not have insurance either but died comfortably cared for in a hospital. My cousin will never pay off these debts. They never will regret that life was valuable and worth it even witout insurance.

                Please know you are in my prayers.

                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


                • #9
                  OK Eileen,
                  Let’s run a tally, shall we?

                  How much is it worth for your husband to have a wife?
                  How much is it worth for your kids to have a mother?
                  Which is worth more – a house filled with sorrow or an apartment filled with love?

                  Hey, what if the care you need is not astronomical in cost after all? Also, I have never heard of a case where the Cleveland Clinic refused to work out a manageable repayment plan, or refused to treat someone who needed their help. Have you?

                  First step, contact the Cleveland Clinic and get on the schedule for a complete work-up. Once you know where you stand you just might be able to make some more intelligent choices. In the meantime use your head for more then a place to apply makeup. Geez, I thought we were friends.
                  Burt

                  Comment


                  • #10
                    But Eileen

                    That is everything that my neice would tell me when we talked on the phone and believe me it took months of me calling from Virginia to Oklahoma to convince her she needed to go somewhere else for help and then she made the appt and because her daughter needed her she canceled the appt which all of us have done when our kids need us but Eileen she is not here today she died Febuary 23rd in her sleep of 2004, i'm really not saying this to try to scare you but girl this disease is one to take seriously, so please don't wait until you have the money because you know that may never happen

                    Shirley
                    Diagnosed 2003
                    Myectomy 2-23-2004
                    Husband: Ken
                    Son: John diagnosed 2004
                    Daughter: Janet (free of HCM)

                    Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                    Comment


                    • #11
                      Thank you Pam, Burt and Shirley for your input.

                      Believe me, I have thought about this 1001 times and more.

                      I guess I'll wait to see what Cleveland has to say.

                      Not everyone will agree with this but, I have always said that when I become a burden, I will leave this Earth.

                      When I can no longer use the restroom on my own, I want to die. I do not want to live my life completely disabled. My family can move on. I'll work with God to help them through.

                      I already have a living will.

                      Please know that I want to live and I want to feel better, I want this more than anything, honestly. My quality of life is suffering greatly and has for quite some time now.

                      But also, I have been misguided by doctors. In November of 2004, my last cardiologist said that I could live for years like this and never said that I absolutely had to have a myectomy done or any surgery anytime soon. She said that it is even possible that I could live to be an old lady like this. She never even saw my echo.

                      When I saw that doctor's partner, he read my echo, and I when asked him what could happen to me in the future -- he walked out of the room and the PA (his assistant) told me he is not good with communication -- that is the honest truth. He just left me sitting there, with his PA and no answers.
                      (When I left that cardiologist office, I knew I needed another cardiologist group.)

                      My new cardiologist said that for any surgery they would want the money up front.

                      Then, I read here about some of the people who have not done well after the myectomy and some who have. I still say it is a lot to chance right now. Sometimes, it seems that some symptoms are traded for others after the surgery.

                      What really makes me angry is that ...... In 1996, I had medical insurance and I saw 4 different cardiologists. And not one of them said I needed a myectomy. And my records said I had Obstruction.

                      I'll let you all know what Cleveland has to say.

                      Hugs,
                      Eileen
                      49 yrs. old
                      Diagnosed at 31.
                      Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                      First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                      Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                      Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                      My brother passed away suddenly at 34 yrs old from HCM.
                      2 teenage children, ages 17 and 15.

                      Comment


                      • #12
                        Eileen, you have so much to think about right now. It's not an easy decision any way you look at it. I hope that you find someone to get you some real answers soon. As far as the one doctor walking out on you, I'd have chased him down. I hate when they don't treat you like a person.

                        Of course there is never a guarantee of how you will feel after a myectomy. You know that. But most people feel a lot better afterward and it's a relative few people who have major continued problems. All I can suggest is what you're already doing, wait for Cleveland to call you back with some answers.

                        As far as the cardio not telling you that you would need a myectomy in 1996, you may not have needed one at that point. HCM is a progressive disease and your condition may have deteriorated enough in the last 9 years to warrant interventions that weren't necessary then. Best of luck to you. I sure hope that you get some good answers soon.

                        Reenie
                        Reenie

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

                        Comment


                        • #13
                          After that doctor left the room, I looked at the PA and after she said "He is not good with communication" I got off that table/bed thing and went to look for him, he was no where to be found.

                          She then handed me the slip to pay the bill.

                          True, maybe I did not need a myectomy in 1996. They did not tell me what my septal wall measurement was, in fact they did not tell me anything about HCM. Maybe they did not know much.

                          I remember after I had thyroid cancer I was talking to the radilogist and I said to him, "I am somewhat worried about the cancer coming back." And he said to me -- his exact quote: "Oh don't worry about the cancer, your heart will kill you way before the cancer will come back." AHHHHH!

                          He probably knew more than the cardiologists.

                          -Eve
                          49 yrs. old
                          Diagnosed at 31.
                          Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                          First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                          Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                          Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                          My brother passed away suddenly at 34 yrs old from HCM.
                          2 teenage children, ages 17 and 15.

                          Comment


                          • #14
                            Ooooppps!!

                            I let the cat out of the bag, my real name is not Eileen, it is Eve.

                            I used the name Eileen because I first joined another heart message board and anyone can join that one and I did not want to use my real name over there. (You just never know on the internet, plus my name is not a very common one.)

                            And then I would refer everyone with HCM over here and I wanted my name to stay consistant.

                            I like the name Eileen, I hope that's still okay Burt.

                            But everything else is 100% true.

                            Sorry everyone.

                            - Eve / aka Eileen
                            49 yrs. old
                            Diagnosed at 31.
                            Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                            First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                            Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                            Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                            My brother passed away suddenly at 34 yrs old from HCM.
                            2 teenage children, ages 17 and 15.

                            Comment


                            • #15
                              Eve (aka Eileen),

                              We don't care what you choose to call yourself, only that you get the best possible care that you deserve. Would it help any if i told you that my real name is really Jimmy? It isn't by the way but that's what my family and friends call me. It used to bother me, but now i figure if it was good enough for Jimmy Stewart then it's good enough for me!

                              Don't let anyone put any undue pressure on you. When it comes right down to it, we all know that you understand what's at stake and that you are only trying to do what's right for you and your family. Nobody can fault you on that. Bear in mind however, that i had my myectomy while unemployed and in school, without decent insurance or any way of paying my medical bills. I've been simply ecstatic with my results, and even those here who have not had the best results will say that they are glad they went through with the surgery.

                              Sometimes you just gotta figure your life is worth more than worrying about how to pay the bills afterwards.

                              I did send you a PM and got your response. I'll reply back shortly and hopefuly we can discuss some of the details regarding your situation.

                              In the meantime, just hang tough and know that help is on the way! You are much too young to be thinking about throwing in the towel just yet!

                              Jim
                              "Some days you're the dog... some days you're the hydrant."

                              Comment

                              Today's Birthdays

                              Collapse

                              Working...
                              X