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heather Find out more about heather
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  • Anxiety

    Does anyone else have problems w/ anxiety and/or panic attacks? Mine have come and gone over the years, but lately they're back. I've tried to stop drug therapy for them, but I think I'm going to have to go back on something. In the past I've been on Prozac and Lexapro. My mom thinks I need something to take as needed, like Xanax. I don't know. Some days I feel like an emotional wreck. Some anxiety attacks are hard to tell apart from actual cardiac issues. I think this scares me more than anything. I think it's my heart and it's my head! My dh doesn't understand this. He thinks I should be able to shake the anxiety and shouldn't take any meds I don't need. There are certain situations that make the anxiety worse and I don't know how to control it. Anyone have any words of wisdom!?
    Heather, 43, non-obstructive HCM, dx'd at age 14, AICD implanted 11-02, PVAI ablation done for a-fib and a-flutter 5-2010. 2nd PVAI done for a-flutter and a-tach 3-2014. 3rd PVAI for a-flutter June 2015, dr forgot to reset ICD settings and I went into vt and almost died, July 2015, July 2015-started tx work up, October 2015, put on list in Dallas and tx'd on November 14, 2015.

  • #2
    I don't have words of wisdom but I want you to know you aren't alone. I hope you get the help you need.

    Reenie
    Reenie

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

    Comment


    • #3
      I would suggest that you see an HCM specialist, your symptoms may be cardiac and may be emotional, however both have an effect on your heart. If your doc can not understand this it is a good idea to get a 2nd opinion.

      Best wishes,
      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
        I went to the Mayo 2 1/2 yrs. ago to see their team of HCM specialists. I wasn't really having problems w/ this at the time and was medicated. I was taking Prozac at this time.

        My dr. here does understand and is willing to put me on meds for this. DH stands for my husband.......He's the one who doesn't think I need meds for this and should be able to mentally overcome it! Believe me I've tried!
        Heather, 43, non-obstructive HCM, dx'd at age 14, AICD implanted 11-02, PVAI ablation done for a-fib and a-flutter 5-2010. 2nd PVAI done for a-flutter and a-tach 3-2014. 3rd PVAI for a-flutter June 2015, dr forgot to reset ICD settings and I went into vt and almost died, July 2015, July 2015-started tx work up, October 2015, put on list in Dallas and tx'd on November 14, 2015.

        Comment


        • #5
          Heather - There is no shame in taking psychotropic drugs. After my brain tumor diagnosis following my son's birth, I was terribly depressed. Paxil pulled me through. Just make sure that whatever you take is carefully monitored for interactions with your cardiac meds, and that your reaction to the drug is carefully monitored by a doctor who understands all of your problems and issues.
          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


          • #6
            Hi Heather
            I know what you are going thru. I first had, what I thought was a panic attack, the day my son passed away. My symptoms were not being able to breath and as time went on, I was gasping for breath and not able to speak and finally passing out. My hands were cold, I had tingling in both my hands and feet, I felt nauseated, and I got very weak.

            My cardiologist now tells me it is actually my heart that can be triggered by anxiety. There are certain situations that appear that no matter how hard I try, I can not stablize myself and sometimes I really don't know what has been on my mind to cause them.

            At one time my cardiologist asked me if I would speak to groups that have HCM or family that has it, I had to tell her no because I am not comfortable speaking in front of a large group of people.

            Since my dosage of Zoloft and Lorazapam has been increased I have been pretty good. The last episode I had was two years ago.

            It is very scary and you should not put it on the back burner. I was told that I am a good candidate for sudden death.

            Please remember no two people are the same, but I certainly would mention it to your cardiologist.
            Esther

            Comment


            • #7
              Seem like there IS a correlation..

              Heather,

              Checkout the following thread http://forum.4hcm.org/viewtopic.php?t=2158 I started it more than a year ago with the same type of questions you are asking. It was one of the most popular threads I've seen on this board. I too have the pleasure of dealing with Anxiety AND HCMA.. such is life.. guess we get to really learn to deal with stress!

              -Darren

              Comment


              • #8
                My doctor tells me also that anxiety triggers cardiac symptoms. HCM hearts are probably much more suseptable to the stress of life since they are already working overtime.

                The catch-22 is that anxiety and HCM symptoms overlap a lot and it can be hard to tell which is which and they may be both!

                Having been married to someone who couldn't understand why I'd "lost my spark" after the death of my father on Xmas morning followed by my own mini-stroke three months later, I highly recommend you sit DH down and have a talk about what the word "support" means.

                It means that he trys to understand what is going on with you and that we can't always just bootstrap ourselves out of stress and anxiety. He may have fears that more meds will make you worse that he is not articulating and those should be addressed.

                And as much as you want to be in agreement with DH, the bottom line is that if you need treatment, it is YOUR call, not his. Your body, your decision. His opinions count, but he isn't going to be any happier if you are miserable.

                I'm sure your DH means well. Good luck.

                Sarah

                Comment


                • #9
                  Heather,
                  Please call the HCM specialist you have seen in the past and speak to them about your symptoms. Many others have had similar issues to yours (as you can see from the responces given here) and it is a complicated matter as to how to properly medicate BOTH issues without creating addiotional issues or under estimating the affects either condition is having on the body.

                  A key issue often over looked is that our bodies are multiple systems connected and therefore must be treated as a whole, not in parts.

                  I have spoken to thousands of people with HCM, most of them have other medical issues ranging from sinus issues to serious forms of cancer, liver disease, neuro disorders and many forms of mental illness. It gets tricky when you try to treat multiple conditions at the same time. We, as a group, are truly individuals with very specific and individual medical needs.

                  If your local doc thinks he is being helpful, he is not understanding the big picture and you deserve someone who will treat the WHOLE you. Please consult your specialist for a 2nd opinion as to how to make you feel better, in the end that is all we are trying to do is to feel better.

                  Best wishes,
                  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


                  • #10
                    Heather,

                    You have gotten some excellent advise from others here. I will simply add that I too have experienced anxiety attacks which for me can be brought on by simply feeling SOB and sensing that I am going to not get enough air. If I am left to think about it and get scared .. it will happen. Not pretty at all. Since having HCM , I have realized I have had this problem for years and the HCM heart of mine is very sensitive to fright, like a baby who is easily startled. It appears to be a reflex that I have very little control over and can be triggered easily with a little jolt of adrenalin into my system.

                    Do speak to someone of knowledge and understanding about this.

                    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


                    • #11
                      Heather,

                      This is a really interesting topic. For the last 5 years, I have been having what I think are breathing problems - only its not like I am short of breath, just like breathing feels a bit uncomfortable - I can almost feel it in my throat and chest. But this comes and goes within the space of seconds. One moment I feel great, the next I feel a sense of breathing being not natural or restricted.

                      The weird thing, is that if I chew some gum or have a beer, it gets better or goes away. On rare occasions, the 'breathing problem' is so bad I feel like I am in danger. But if I pop a Xanax, I usually feel ok within about 10 minutes.

                      I think, therefore, that this whole time these breathing problems have not always been related to HCM. Why for example, would taking a Xanax or having a cold beer make me feel better? I think that on at least some occassions, I have been suffering from anxiety; not the usual "oh **** I can't breath, I am going to die". But more general anxiety over the HCM and a belief that what I am experiencing is not anxiety, but is directly related to the HCM.

                      I've just recently had a myectomy and have noticed that my chest pain has completely gone - thank God. But on occassion, I still notice that pressure in the throat and chest and feeling like it is slightly uncomfortable to breath. Maybe this is still anxiety, or perhaps it is the residual dyspnea which has remained after surgery? I hope it is the former, because this IS something we can all do something about.

                      Take care,

                      Paul
                      Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.

                      Comment


                      • #12
                        Heather,

                        I agree with what Sarah had mentioned. It is very important to sit down with your husband and discuss this. A spouse should be there for support and understanding whether it be relating to a physical conditon or emotional support. MY husband had times in the past where he would think I could have the energy a normal person has and wouldn't completely understand what it can be like having HCM. I, too, have many times where I can get anxious when I start feeling flip flops or weird palpitations and getting nervous about it makes it even worse! I have been thinking of asking my doctor for something to help calm down . I find that I can get my heart on a roll very easily! If I get nervous about something, I can feel my heart kick into overdrive and I'm sure many here experience the same thing...also, I would go see an HCM specialist as Lisa suggested...and it is very hard sometimes to differentiate between is it the heart or is it just being anxious...good luck
                        \"It is not length of life, but depth of life.\"

                        Ralph Waldo Emerson

                        Comment


                        • #13
                          Thank you all for your replies! They mean so much to me! It's nice to have someone to relate to!!
                          Heather, 43, non-obstructive HCM, dx'd at age 14, AICD implanted 11-02, PVAI ablation done for a-fib and a-flutter 5-2010. 2nd PVAI done for a-flutter and a-tach 3-2014. 3rd PVAI for a-flutter June 2015, dr forgot to reset ICD settings and I went into vt and almost died, July 2015, July 2015-started tx work up, October 2015, put on list in Dallas and tx'd on November 14, 2015.

                          Comment


                          • #14
                            Hi Heather,

                            Yes, there were many times when I would have anxiety and still do from time to time. And for me, anxiety can cause heart rhythm distubances. I have been to the ER twice because stress caused long runs of PVCs (PVCs lasting up to 20 minutes).
                            Although, I should say that my homes situation is not stable. It is very stressful. But I try to keep as much peace as possible for the sake of the children.

                            I take Xanax to sleep and during the early evening. I take 1 mg everynight before I go to bed for sleep. I also take .25 mg (a quarter of a mg) during the early evening to stay balanced. (Evenings can be more stessful and I do not drink any alcohol ever.)

                            If you take Xanax on a consistant basis for any length of time, your body WILL become dependant on it. That is absolutely 100% for sure. If you take it for any length of time, you will need to continue to take it and if you want to stop taking it, you have to slowly ween yourself off of it. Once your body is dependent on Xanax, you cannot just stop taking it because it can be very unhealthy and even dangerous to your health.

                            My doctor says that many of her patients that take Xanax are cardiac patients.

                            Since I do not drink any alcohol (it give me palps and a higher heart rate) the Xanax works for me.

                            Another VERY important thing about Xanax, if you SMOKE CIGARETTES the Xanax will not work effectively, in fact I have heard it does not work at all. I do not smoke and like I said, Xanax works fine for me.

                            If you (or anyone) have any questions, please don't hesitate to ask me either here on this thread or through a Private Message.

                            Smiles,
                            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


                            • #15
                              You're welcome. One thing I do that I forgot to mention is that when I'm having a lot of cardiac symptoms and I can't tell if it is just stress or time to go to the ER, I will take a half dose of my Ativan.

                              If I feel better, voila! No ER. If the symptoms don't go away--off I go.

                              This is just what I do and should not be considered medical advice!

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