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kathyn2 Find out more about kathyn2
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  • Blackouts?

    What exactly causes blackouts or presyncope in hocm? Isnt it usually from one cause or can it be several? I ask this because I have had 2 and am trying to make a decision on an icd. I wonder if it is only vtach that causes blackouts. I have had hocm a long time and the 2 I have had in the past 2 weeks are the first I have ever had. Otherwise I was not at risk for sudden death. I do have an appt with Dr. Shah but it isn't til jan. 20th and it is making me nervous to wait that long to decide on the icd...

  • #2
    Re: Blackouts?


    I read somewhere, maybe on this site, maybe somewhere else that HCM doctors and HCM patients are not often in agreement about the answer to your question. I read that most doctors think that the cause is most likely due to a sudden drop in blood pressure, but that most HCM patients think it is due to arrhythmia. I found that statement very interesting because that was my experience. I could swear that my syncope episodes were rhythm related. In the first one I actually heard my heart get more and more irregular and then stop. But when I mentioned it to a cardiologist, he explained it as probably due to a sharp drop in BP. I have had other occasions when I "browned out" - presyncope - in which I would say that it probably was a drop in bp. So, I am not sure I have been any help, but everyone agrees that an ICD is the solution. Since you are nervous, I suggest calling Dr. Shah's office to see if you can get in sooner. Explain the situation clearly and see what can be done.



    • #3
      Re: Blackouts?

      Wearing a monitor and capturing these episodes is probably the only way for anyone to be absolutely sure what brought the syncope on. A sudden drop in Bp ,P can also result in an irregular rhythm. I think that the broarder term . A Drop In Bp is used as the route when uncertainty of diagnosis and situation prevails. With Hcm Hearts arrythmias can occur suddenly and with little provacation. I think many doctors will side with the BP theory because , unless a biopsy has been performed on a heart or on a removed piece of the heart they will never really be fully conclusive that it is HCM.
      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


      • #4
        Re: Blackouts?

        When I had my fourth angioplasty back in May 2003 things did not go well, and I was released from the hospital too soon. Coated stents were used but the in-hospital doctor neglected to give me a prescription for Plavix to prevent blood clots. The next day, before I had even seen my own cardiologist, I passed out in the kitchen. When I came to and tried to get up I passed out a second time. I then asked for a pillow and took a nap on the kitchen floor. I awoke an hour later and crawled to the den and the lounge chair.

        The next day I saw my cardiologist who had a fit when he learned that I was not on Plavix, gave me three pills immediately, and a prescription for one a day - but it was too late. The next morning I awoke with a stroke. During the work-up with the neurologist he said that low blood pressure in the brain was what caused my passing out, and it was positional in nature. When I went to the floor the blood flow was sufficient and I came to, but when I tried to get back up I passed out a second time.

        What I actually think happened was that I had a clot that was diminishing the flow to a part of the brain, and that was what caused a local drop in pressure. While I napped the clot either moved to a less effective spot or dissolved, and I was back to normal. During that night either the clot moved again or a new clot came through and caused the stroke. So in my case the ultimate cause did in fact involve a drop in pressure in at least part of my brain.

        I wonder if at least some of the syncope episodes are the result of the heart developing an irregular beat and throwing a clot which in turn inhibits some blood flow to the brain, and it is this cause and effect which leads the doctors to think the syncope was pressure related and the patient to feel it was rhythm related. Of course in other cases it could very well be the rhythm itself (or lack thereof) that reduces the blood flow enough to cause syncope.

        ‘Crazy Rhythm’ was a great song, but it is not a good heart beat. Such a situation could even reduce the blood flow sufficiently to cause a person to collapse and die. The best preventative, I believe, is to not let the heart go into these weird rhythms in the first place, by the use of drugs to prevent it, - and an AED, with pacing if necessary. Interesting subject.


        • #5
          Re: Blackouts?

          The only thing I’d add to this is my recommendation that you be very accurate when describing these episodes to your Dr. I have had dizzy spells when getting up out of a chair quickly. I have had sudden shortness of breath accompanied with dizziness when exerting myself. This summer I did nearly pass out after simply lifting a 50lb kayak off the roof rack of my car. I had to catch myself after putting the kayak down and kept my head between my knees but I did not black out.

          I don’t conceal these events when they happen, they probably are significant, but this is not syncope. I don’t know if I am 100% correct about this, but my definition of a blackout is something that happens so quickly that you can’t possibly intervene and prevent it.

          Fast forward to this past September: My wife was with me on one of my visits with Dr. Maron and during conversation interjected “…what about all of the blackouts you have been having?”

          Let’s just say these small episodes now became a very big deal.

          Like you, I continue to be on the fence about an ICD. You will find no arguments against having one; I’ve been looking for a couple of months now. Insurance carriers don’t bat an eye at a Doctor’s recommendation for having one and ICD manufacturers say most people that need one don’t have one.

          From American Heart Association:
          What is syncope?
          Syncope (SIN'ko-pe) is temporary loss of consciousness and posture, described as "fainting" or "passing out." It's usually related to temporary insufficient blood flow to the brain. It's a common problem, accounting for 3 percent of emergency room visits and 6 percent of hospital admissions
          • 1995: Brigham & Women’s Hospital - diagnosed with Atrial Fibrillation
          • 2004: Falkner Hospital – diagnosed with Congestive Heart Failure
          • 2004: Tufts NEMC– diagnosed with “End Stage” Hypertrophic Cardiomyopathy
          • 2005: Genetic Test – Laboratory for Molecular Medicine. HCM confirmed – missense mutation detected in TNNT2 gene
          • 2009: Brigham & Women’s - Third cardioversion begin Amiodarone for AFib
          • 2011: Brigham & Women’s - Medtronic ICD implant


          • #6
            Re: Blackouts?

            My 2 blackouts happened while just sitting doing nothing. One I was at the computer reading. All of a sudden I felt a squeezing in my head and my eyes went black. I couldn't see and my body started to fall off the chair. I said to myself 'don't faint don't faint' and started to go out but then before I actually fell off the chair my eyes cleared and I felt ok. It all happens very quickly. Just a couple of seconds.

            The second time I was sitting on my bed and the same thing happened. The electrophysiologist thinks they are dangerous arrythmias because I wasn't doing anything and wasn't short of breath, dizzy etc. I didn't feel any heart problems. None of the missed beats, double beats etc that I feel all day long. It all seemed to be in my head. LOL Thats why it is hard for me to attach this problem to a heart arrythmia but I guess I should trust the guy. I wish I knew what to do. I have had this disease for years and never had a blackout before. This electro. doctor claims my condition has gotten alot worse and needs the icd. But I don't know how he knows that. He didn't do any exam, run any tests...nothing. Thats why I am going to Dr. Shah. To see if he thinks I have gotten worse. Dr. Shah is going to be gone. Thats why I can't get in etc. and sooner. This isn't a good time to get in right away anywhere. Many are on vacations etc.

            Anyway, I hate sitting on pins and needles wondering if I am going to keel over soon and on the other hand I hate making a rash decision that affects the rest of my life having icd's replaced and other things that can go wrong with them.


            • #7
              Re: Blackouts?

              Oh...and one more thing...I am wearing an event monitor. Would you believe both times I didn't have it on! I was going to get in the shower and had taken it all off and wasn't wearing it either time. Murphy's law I guess. No dangerous arrythmias have been recorded on it in over a month. I am keeping it a second month now and I hate to even get in the shower! So both blackouts went without getting a recording. So unhelpful.


              • #8
                Re: Blackouts?

                Don't have any answers here, but mine also happened when doing nothing. One time I had been exercising, felt funky, lay down on a crunch bench figuring I would get over feeling funky quickly and inconspicuously and completely lost consciousness. But no one knew because I came to still lying on the bench. The other time I was sitting on the couch playing solitare on the computer, lost consciousness briefly and completely, and came to still sitting on the couch. Other times when I have not completely lost consciousness, I have been crossing the street, standing in class, lying in bed, etc. So, my take on it is that you may have to consider getting an ICD, but I can say that it took me nearly three years from the first episode to get this done.



                • #9
                  Re: Blackouts?

                  Hi Kathy,

                  I have "NEAR" synscope spells quite frequently, at least once a week. If I go 2 weeks w/o one its rare. I assume they are near synscope spells and my cardio feels like they are. Everything gets real black around me and I feel faint. Sometime I'm up moving or bending, but I have had them just sitting still. I have never actually passed out from any of these events. And they pass pretty quickly. Actually I have only passd out 1 time in my life, shortly after I gave birth to my last child when I was taking a shower and I passed out and hit the floor, but that was 18 yrs ago.
                  Im susposed to see my South Carolina cardiologist in Jan 2005 and we are going to take a look @ an ICD for me. Actually its me balking @ the ICD placement. It just makes me nervous.

                  The BEST is yet to come !!


                  • #10
                    Almost fainting

                    Hi Folks---

                    Like Connie, I have had many of these near fainting episodes---I had them constantly and thought they were a form of mini epilepsy. I told Doctors I was having them all the time, sometimes 100 an hour.

                    When I would bend over, it would be worse. Well, since my alcohol ablation, I haven't had one! I think the "backwash" effect of the obstruction was to blame.


                    • #11
                      I too have many 'near fainting' spells. I had a really bad one the other day while bending over. Most of the time they are preceded by an irregular rhythm. I have never passed out though, but came mighty close. I too am obstructed, I wonder if that makes a difference. I find this the most disturbing HCM symptom, it really changed my lifestyle. I have given up driving, and won't go for walks alone etc. I am pretty certain a drop in BP is not related in my case. I hope you get some answers soon, take care.

                      It's not what you gather, but what you scatter that tells what kind of life you have lived.

                      Dx in Feb/99. Obstructed. No ICD, no surgeries, no family history. 2 sons ages 14 and 6.


                      • #12
                        Pam, do you have an icd due to these irregular rythyms and blackout spells?