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James unable to Sleep.


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Janet McClure Single mother to two amazing kids. James is 13 and has HCM. Emily is 11 and recovering from TBI.
Janet McClure
Barely Heart
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  • James unable to Sleep.

    James was diagnosed in January. 1st of March he was sleeping 17-18 hours a day. We had been to the pediatrician and they thought he might have mono because his glands were swollen. They did test him for strep. Four days later it came back positive for strep so they did not test him for mono. After he was feeling so tired and feeling bad I had taken him back to the cardiologist. That was when they found his heart was enlarged even more and then we went to Boston and had ICD put in. They took him off the Toprol and figured that was what was making him so tired. When we came back we went back to the cardiologist and he did an echo and saw where he had a gradient and put him on verapamil. James was only off Toprol 4 days before going back on Verapamil. He got to where he couldn't sleep, headaches, hot flashes really bad, heart racing some. Dr.'s then decided to take him off Verapamil and let him see how he feels off all medicine and get use to the ICD. So now he has been off all medicine 9 days. He is still not sleeping. He is only sleeping several hours a day. He lays down and tries to go to sleep but can't. I have been staying up all night with him and I am wore out.

    I took him back to the pediatrician this past Tuesday and he decided to test him for mono, overactive thyroid, underactive thyroid and anemia. It came back that he does have mono. It is not in the most active part now but he apparently has had it for some time. We go back to the pediatrician on MOnday and he said he would come up with something that will get James resting.

    Anyway, this not sleeping, could it be from the ICD. I wouldn't think the mono would not let him sleep. I know I am exhausted and so tired and I know it is not good for him. His main complaints are really bad head aches, his stomach has been upset quite a bit, his stays really hot alot and he just does not look well to me. I have taken his blood pressure and sometimes it is like 140/80 and his pulse around 140. That doesn't sound right either and that is when he has not been doing anything. I don't know what to do. I hate to keep calling the doctors, but could this be a cardiology problem, or just effects from mono or something else. Just wandering if any of you with ICDs have had problems sleeping after you got the ICD. He has not been able to go to school and has just been really messed up!

    Any help would be appreciated! A very tired mom! Janet
    My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.

  • #2
    I think we are dealing with apples and oranges here. I do not think that his inability to sleep is a physical issue related to his HCM. It may be a stress responce to the entire situation. It sounds to me that James has done well with the entire situation but even still it is a great deal for anyone to take.

    I would talk to the doctor about the mono - get that all straighted out then see how the sleep works out. If it is still an issue then a sleeping aid may do him well - or even taking a small dose of beta blocker at night may help him.

    Best wishes,
    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)


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