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Seeing Stars

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heather Find out more about heather
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  • Seeing Stars

    I wondered if anyone else experiences this........everytime I bend over to pick something up or whatever or if I cough really hard, I'll see stars. It only lasts a few seconds but they're very visible. I don't feel dizzy or anything, just see these little flashes of twinkling light.......It seems to be worse at different times. The last few days it has been pretty bad.

    Thanks,
    Heather, 30-HCM, NM
    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
    Hi Heather,

    I like to call mine 'fireflies' as when it occurs, the whole room seems to fill up with brilliantly lit fireflies and often takes a few minutes for the little buggers to go away completely. Woo hoo! This seems to happen about three or four times a day, and i usually experience some dizziness along with it as well. My doctors don't tell me that this is a direct result of HCM but they don't say that it isn't either. All i can tell you is that i just turned forty years old and until recently have never had anything like this happen. Also, the frequency with which i experience this has increased right along with my other HCM symptoms

    But hey, i need to try and look on the bright side these days and not always the negative, so when i see my little friends buzzing around my head now i just say "Wow, what a rush!"

    Take care,

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

    Comment


    • #3
      hey yea I see the fireflies also . when i was a kid people would pay good money to see them (drugs) I dont know what the big deal was !! Sorry I cant tell you what it is though good luck Rich
      Allways remember you cannot control the wind!!
      However you can adjust your sails!!

      Comment


      • #4
        You're lucky

        When I cough or walk too fast, I don't see stars, everything just grays out. Think the stars would be much prettier. Again, most likely related to HCM but no one can say for sure.

        Sue

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        • #5
          Been there...done that... only about 1000 times! It started when I was about 13 or 14 gets better for a while then it is back again - - why.. not a clue but in over 20 years it has not really caused any "problems"...just yet one more "odd" thing in the life of those with HCM
          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


          • #6
            I've seen stars--quite alot I might add. It usually happens as you said when I bend over or if I get out of bed too quickly. I also get the slight dizziness with it too. What a strange disease we are deally with.

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            • #7
              Thanks for all of your replies. They made me feel a lot better to know I'm not alone w/ this seeing stars thing. I guess I should look at it as a "rush" instead of !

              Heather, 30-HCM, NM
              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


              • #8
                Stars

                You can add me to the star grtoup Mine are primarily when getting up too fast or coughing.
                Marty Bishop

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                • #9
                  I see stars all the time. When I bend over, lift something heavy for a long distance, ETC. When I played basketball ( pre hcm days) I would sometimes loose all my sight. Compleate blindness. It would be so intense, it was very bright. Pure white. That was very interesting on the court. I'm probaley lucky I didn't drop dead. Have no clue what it is though. I can remember having it for a long time though. I can tell how bad it is by the brightness and density of it (fireflies).
                  \"When I\'m gone and people think of me... I want them to smile and laugh.\" Jason Caldwell

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                  • #10
                    when I was a kid I use to "play a game"... I would get up from bed in the morning and see how far I could get through the house before my "vision came in". One day I walked directly into the table and my mother asked what was going on...I said 'nothing just waiting for my eyes to wake up"...just about then my vision "came in" and I looked at her and she had NO idea what I was talking about...so being a typical kid...figured I should not say anything to here again because she may make me go to a dr or something!
                    After that I would stand in my room and wait for my vision to come in so nobody would see...
                    The fact I am alive today amazes me to no end!
                    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


                    • #11
                      hey whats even weirder is I occasionally get what my Dr. once called an Occular Migraine which is a migraine headache with-out the pain but what it does is effect your vision and what you see is like someone took your vision screen and pulled it apart like a jisaw puzzle its all there just not together weird huh !!
                      Allways remember you cannot control the wind!!
                      However you can adjust your sails!!

                      Comment


                      • #12
                        Rich,

                        I too get what is called an Occular Migraine. More specifically the vision is affected in the shape of a rough sideways "V" shape. It will start near the center of your FOV and get progressivly larger until it passes out or your periphial vision. Usually lasts about 5 minutes during which I can still see around it. It occurs in both eyes but is sometimes stronger in one. My opthamoligist indicated that they were not harmful or indicitive of any disorder.

                        Bob
                        Cleveland Myectomy Crew
                        Member since November 2002

                        \"Chance favors the prepared mind!\"

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                        • #13
                          Rich and Robert... ME TOO! and for all my life! I do have several types of migraines... some are vision only...others include a head ache...and the big ones are vision followed by a head ache followed by being sick to my stomach...
                          I would say the vision issues happen several times a week from a minor issue to a BIG ONE every month or so...leaves me so I can not read, drive or focus on anything for 5-10 minutes...then it is gone.
                          I do think there is an HCM connection as my father and sister (Lori) have had similar issues.
                          Nothing really helps make them go away...if anyone has any hints...I am listening!
                          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


                          • #14
                            I too, get them, I describe mine like the images in a kalediascope. They are only in my periphial vision. And they are very colourful - like the colours in a prism. Mine last for about 20 minutes. But, I like you Lisa feel nauseated afterwords with a headaches. But not a migraine. I never knew of any HCM connection. Umm interesting.

                            Comment


                            • #15
                              This is odd. I suffered from his also but haven't had the problem in a long time. All of a sudden, for an unknown reason, I would feel faint and see stars. My body went very weak and if I didn't sit down I would fall down or faint. After about 5 or 10 minutes it would all go away. I had these spells as a young adult but it has been a long time since I have had one. I was also told there were ocular migraines. Seems to be a connection here since so many of us have these.

                              Comment

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