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  • feeling lousy still

    after my last visit with my cardio he took me off the verapamil and baby aspirin, said its not doing its job in help with controlling the pvcs and generally not feeling better along with the fact that I developed vertigo July 4th which is also our wedding anniversary ( no fire works that day) He had expressed his hope that the vertigo would either go away or at least lessen in severity stopping the meds, but, Im still experiencing it along with severe headaches now and very often. He said that if I felt up to it I could try to do very light weightlifting to strengthen myself back up after 2 yrs of frequent walking. Been giving it a shot, I have either discovered old muscles or just my body in protest. I still have very sore ribs every morning when I wake up, I keep a pillow on both sides to keep me from lying on my sides completely but thats a job also. My worst pvcs occur at night and even after having the surgery, I still numerous episodes and I have yet again given the docs another project to find out why the worst occur at night during full rest. During my last workout I tried the exercise bike and even with 5 minutes of a slow peddle my heartrate got up to 132. I know thats extremely higher than my docs would like me to get so Ive decided to stay away from and cardio at the gym. I will just have to baby step my walks in my neighbor hood when it cools off some (I live in Florida) I guess Im just a little disappointed, I really thought I would feel considerably better since surgery ( Oct.21st will be a yr) The doc has also decided that he wants to me to see my PCM here on base to monitor my O2 sats for a few days to see where Im at. I can understand why though, last summer I had my tubes tied and after going into anifalctic(sp?) shock. I had asked him if there were any other med that I could take to maybe help he said there was amiordone but that would only cause other problems and we already know that most of the others I cant tolerate. Guess I just needed to type some of my thoughts, they have really consumed me today. My husband let it slip that he wished we could have had another child, I didnt get angry though, its been a long 2 yrs and alot of things to deal with and he has been amazing through it all
    Lana

  • #2
    Re: feeling lousy still

    Dear Dew,
    Just a quick word in passing. I wound up with vertigo a few years ago – strong headaches, dizzy spells, nausea, having to hold onto the bed to keep from flying off – I know what it’s like. If you wrap your arm over your head and hold your head firmly on the pillow, the spinning usually stops pretty quickly. Getting up is a long slow process. Sit for at least a minute before insinuating yourself into a standing position.

    There is an over-the-counter medication for motion sickness that is also used for Vertigo. I have forgotten the name, but it is also given by doctors via prescription. Check with your pharmacist and write down the drug name – not the brand name, then check with your doctor before buying or using it. He should have an updated list of the medications you are on and will tell you if it is safe for you to use this drug.

    I hate to tell you this, but vertigo usually recurs from time to time over a period of years – usually lessoning in intensity as time goes by. That medication did wonders for me. My symptoms quickly disappeared after taking it. I hope it can do the same for you.
    Burt

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    • #3
      Re: feeling lousy still

      Dear Dew

      I'm very sorry the hubby is not as supportive as he could be and neither is your doctor --sounds like.

      I hope you are talking to Lisa to find someone in your area who is HCMA approved as I have not heard many good things in general about Florida health care.

      HCM can be very cyclical or episodic and you can have periods where everything is bad but it doesn't have to stay that way.

      I'm afraid I don't have better advice about medications except that a better doctor may have better ideas.

      take care,

      Sarah

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      • #4
        Re: feeling lousy still

        What is vertigo?
        Esther

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        • #5
          Re: feeling lousy still

          Dear Dew, It's not unusual for the PVC's to be worse at night or during rest. They are a heartbeat that sneaks in earlier (from the ventricle) than the next regularly scheduled beat (from the atria). Because you are at rest, there is more time for that beat to sneak in. When your heart rate is higher, they are less likely to occur because they can't jump in ahead of the normal atrial beat. It's all a matter of timing. Also, you are more likely to be aware of them at rest. When you are moving around, you just don't feel them as easily. As to the rest of your post, if you haven't talked with Lisa lately, maybe it's time. See what she has to offer. Best wishes, please keep us posted. Linda

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          • #6
            Re: feeling lousy still

            My husband is amazing and has stuck by my side, my daughter had a sleep over and thats what brought on the wishing of having another child we both feel that way at times. Unfortunately, there are no specialists local so we travel to Miss every 3 months. My doctors have always been very supportive and I dont feel that they have directed me the wrong way. Im still learning to deal with the bad days I guess. Vertigo ( dizziness) seems to come and go. in the beginning it was constant. I really didnt want to make it sound like I have no support because I do, I just hate that my family has to go through this. I need to make a correction, its not my O2 sats that are going to be checked its my BP that will be checked for 5 days. We are military so the hospital is a few minutes away and my PCM who found this in the beginning is also very helpful. I cant complain in that department, just complain in how I feel and still try to learn more about this disease
            Lana

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            • #7
              Re: feeling lousy still

              Dew Drop, is there anyone at Wilford Hall who might be able to help you? That's in Texas. Also, Linda lives near Bethesda in Maryland. There may be someone there also. My husband was Air Force and had his diagnosis confirmed at Tripler in Hawaii and had his ICD implanted at Wright Patterson in Ohio. I'm not aware of any specialists, the military would have no need of one since the active duty population is what they're primarily concerned about. I'm thinking out loud here, but I would be willing to bet that Tricare will cover part, if not all, of your care if you did go to a specialist. I think that Dr Asher is now in Florida, maybe Jacksonville? Good luck.

              Reenie
              Reenie

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

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              • #8
                Re: feeling lousy still

                the doc I see in Miss. is an HCM specialist, the surgery was done at UAB by Dr. Pacifico. Luckily Tri-Care has paid for everything. We even get paid for our trips to Miss. Most of the docs at the base in Miss are civilian, so they receive extensive training, I technically have 2 docs there, one just got back from Duke University from a yr of training.
                Lana

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                • #9
                  Re: feeling lousy still

                  Dew,

                  I don't really have anything to add to the others' posts, but i just wanted to say that i'm sorry you're continuing to experience so many problems, and i hope you get to feeling better real soon.

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

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                  • #10
                    Re: feeling lousy still

                    thanks Jim, I guess I was really trying to see if anyone still feels this way even after having surgery. Also, Im curious what meds others take
                    Lana

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                    • #11
                      Re: feeling lousy still

                      Dear dew , you are not alone.
                      I thank my specialists for helping me reach the goal we set: to take away the most severe symptoms and to allow me not to be thinking of this disease constantly because of the severe symptoms. We did achieve that goal. My chest/heart does not pound like it will explode, it still pounds more then if i were normal, my sternum does not feel like it will split in half when this pounding occurs, because the pounding is less and related to what i do that is too much vs everthing was too nuch before. Still there is breathlessness for a shorter duration if I don't push. Vertigo is sporadic and for me i think it could be dehydration at times. There are many more things i would have loved to say goodbye to , but it is not what will happen . There is no cure , sadly , but help that offers hope that if different things and meds work ,then there could be more "better "days . As my docs pointed out , now with the obstruction taken out , things that did not work before could work now. The heart after myectomy is very different. With the obstruction gone they are able to separate the symptoms and see just what our hearts feel like now. From what I have read those without obstuction seem to be alot like me or me a lot like them. Some of us who had obstructions were well into the CHF before the surgery and this still puts us in a little different category. What do you think? Go for another consultation and lay everything on the table.
                      Best Wishes , 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

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                      • #12
                        Re: feeling lousy still

                        Dew,

                        I'm currently on Atenolol 100mg, Aspirin 81mg, Lasix 40mg (as needed) and Potassium 20meq (as needed). My myectomy was in June, and although i've had a great recovery from the surgery itself, i have had some continuing fluid issues to contend with. I'm hoping this gets resolved soon, and i think that perhaps cardiac rehab will help quite a bit in that area. I got a pretty late start because of insurance issues.

                        Hope things get straightened out for you soon!

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

                        Comment


                        • #13
                          Re: feeling lousy still

                          Jim,

                          I hope you get to start rehab soon. It is amazing how much it has helped me. I've been back to work for two weeks now. I've three weeks of rehab left, then I have to start paying it out of my pocket if I want to keep working out.

                          Good luck to you...


                          Tigger1
                          " Real Courage Is Being Scared To Death But Saddling-Up Anyway "

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