boyfriend has hypertrophic cardiomyopathy with constant chest pain

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My boyfriend was diagnosed with hypertrophic cardiomyopathy at 15 and is now 19. He had a pacemaker and a defibrillator placed in his chest at 15 . He has chest pain almost constantly, especially after he eats, whether its steak dinner or a granola bar. He cant even sleep layin down, he has to sit up. He has seen multiple doctors including going to mayo clinic. They continue to tell him its just acid reflux even though none of the medicines prescribed help. He says he can tell a major difference when he gets acid reflux as compared to his "normal" chest pain. I'm just trying to see if anybody would have any helpful ideas as to what he should do? I hate seeing him miserable all the time.

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  • Posted

    Hi Nickiejeo

    My name is David Iam 55 years of age and was diagnosed with Hypotrophic Cardio Myopathy 5 Years ago and while I dont seem to have such severe problemsas your boyfriend I can report that most of my atrial fibrilation and chest pain occurs after a meal. I am about to be placed on anticoagulants to reduce the risk of stroke. Cant claim to be an expert on any of this and feel for yor dilema, but may I suggest that we stay in touch by means of a daily food diary. I will state exactly what I eat on a daily basis and you can compare this with the diet of your boyfriend. I will also document any uncomfortable feelings that arise after food consumption. 

    My job is fairly physical being a carpenter and joiner and I must admit I can sometimes find it very difficult to complete some of my daily tasks especially after mealtimes.

    Like I said I am no expert but in my many years on this earth I find that disscussing similar events can sometimes bring great insight into each others individual problems, and even if it dosent as they say a proplem shared is aproblem halved.

    I await your reply but will understand if you do not.

    Your sincerely.

    Dave O

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    • Posted

      That sounds ok to me. I may not b able to get on daily but heres a good example. We just went out to eat he had a blizzard medium fry and a tenderloin about an hour ago. He is now in enough pain all he can really do is sit on the couch. The only activity hes done is drive home. I just wish there was something I could say or figure out that woukd help him so any help is appreciated!
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  • Posted

    Hi Nickejeo

    That sounds  familiar, dont get me wrong I love my food but after eating I can sometimes barely get myself upstairs to bed and then lay awake waiting for things to subside. Not so much chest pains but shortage of breath and a Racing heart. very uncomfortable and always after food.

    I try to eat little and often but even at work after a sandwich, crisps and cereal bar I get out of sorts for an hour or so after my break.

    I Dont know if the body, trying to digest the meal redirects the blood supply to other areas and as such leaves less blood pumping around the heart, causing these uncomfortable feelings. 

    Havent really eaten tonight will have a light snack when my wife returns at 9.30pm probrably a toasty with cheese.

    Weekends are difficult when family are around I was brought up in a family where mealtimes were important family gatherings a time to eat talk and enjoy.

    Dont know your boyfriends name or circumstances but as I said I have a fairly physical job and find a little exersise helps tremendously. Swimming works well for me before work. Just a gentle few lengths of the pool at my local gym seems to set me up for the day

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    • Posted

      Oops sry jake cant swim due to water putting too much pressure on his chest. When it comes to exercise he cant do much any strenuous activity seems like its gna kill him. His job isnt too strenuous. Even walking a short distance seems to b almost too much.
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  • Posted

    Hi 

    Sounds like Jake is suffering somewhat. Have the doctors made any suggestions? Is the gastric reflux due to a hyatus hernia?

    I can only speak for myself and I dont seem to have it half as bad.as Jake. I do hope he finds some answers. The eating little and often and the exersise are the biggest help for me.

    I think you need to be more persistent with your doctor, I had a bit of a heated disscution with my own GP yesterday. He wants to start me on Warfarin but I want to try some of the newer treatments which dont require constant blood tests. He said he cannot make that descition and

    has referred it to my cardiologist. Problem is I guess that the newer stuff is more expensive so will probrably be fobbed off again.

    You and Jake take care and I hope you get some relief soon.

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