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  • sleeping pills?

    [sleeping pills?]

    Author: Dolly (Andrew's mom) (---.pressenter.com)

    Date: 12-16-02 09:12

    I am wondering if over the counter sleeping pills are ok with HCM? DO any of you take them?

    Andrew (13) has been having constant insomnia for months now. He is awake off and on all night long, with just "dozing" in the early hours of the morning. It doesn't matter how tired he gets during the day, he can't sleep at night!

    We have tried everything we can think of to get this turned around. Forcing him up early in the mornings, having him read in bed (he loves reading), having a fan on his the room (the hum used to help), no eating or drinking in the evening, etc.......he has been cooperative with all of the above becuase he is so frustrated with the insomnia!

    There has been no change in his meds. He has been on Atenolol for years.

    I am thinking about trying some over the counter sleeping pills with him.....

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: sleeping pills?]

    Author: Sarah B. Board Moderator (12.144.99.---)

    Date: 12-16-02 09:46

    Hi

    I really think you need to be talking to the doctor. A 13 year old shouldn't be having this kind of trouble. A pharmacist can run a drug interaction request on beta-blockers and sleeping pills. I've taken Ambien (prescription) from time to time with no ill effects.

    However, the doctor needs to be in on this one.

    S

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    [Re: sleeping pills?]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 12-16-02 14:25

    I am with Sarah - I would not even attempt an over the counter item on a 13 yr old with HCM - -talk to the Dr and let us know how it goes.

    Best wishes,

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: sleeping pills?]

    Author: Dolly (Andrew's mom) (---.pressenter.com)

    Date: 12-16-02 14:32

    Thanks Sara and Lisa for the responses.

    Would you mind if I ask what the concerns would be? I have not wanted to bother a doctor about it becuase I really haven't been concerned about anything "medicaly", he just plain can't sleep.....

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: sleeping pills?]

    Author: Board Moderator (Sarah Beckley (---.client.attbi.com)

    Date: 12-16-02 15:55

    Dear Dolly

    The concern with beta-blockers and sleeping pills is that they both slow you down and you don't want to slow him down to a dangerous point.

    Furthermore, it just isn't right for a 13 year old to have insomnia. It may be that he is dveloping a reaction to the beta-blockers and needs to try another one or consider a calcium channel blocker. Or there could be something else going on entirely --I don't know what, exactly, but insominia is pretty rare in kids unless yours is particularly angst-ridden (?)

    have you two talked about why he thinks he can't sleep? does his mind not stop thinking or is it different? what does it feel like when he can't sleep --what is different from when he could?

    S

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    [Re: sleeping pills?]

    Author: Ron (---.wp.shawcable.net)

    Date: 12-16-02 19:22

    I have a son that is 15 and was diagnosed just over a year ago.......Sleeping was not a big problem for him for quite a while but it has been extreme in the last few weeks now. It is almost impossible to get him up in the morning, he now starts his school day in the 3 rd period because he simply can not get up inthe morning. He also is a reader and can read till the wee hours without getting tired, sometimes 5 or 6 in the AM.

    Even on the nights when he does fall asleep it is not a very deep sleep and often wakes up. He is on 40 mg Nadolol. The doctors are a aware of it but do not seem to have any solutions, sometimes I feel that they do not really know what it is like. I would love to hear from you if you come up with any ideas or solutions. When we try to talk to him about it he really does not say much and doesn't overly want to talk about it. Hopefully we will find a solution soon. This is really bad.

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    [Re: sleeping pills?]

    Author: Dolly (Andrew's mom) (---.pressenter.com)

    Date: 12-17-02 02:17

    Sarah, yes we have discussed it and tried to come up with some reasons. He doesn't say anything that points to a particular problem (like his mind is going a hundred miles an hour) and he gets frustrated when I ask questions like that becuase he doesn't know "why" he can't sleep. His body is tired and laying down feels good to him. (He does not stay up playing or fidgeting like he has energy to burn up) He can read a whole book in a night so I don't think his mind is "bouncing around" or he wouldn't be able to concentrate enough to read a whole book. We are at a loss.

    Ron....Your son sounds just like Andrew!! Andrew is extremely hard to get up in the morning!!! (understandably!) Most times he is not really sleeping in the mornings, but dozing, (for example, he shuts his alarm off almost immedietly when it goes off) but just does not have the energy to get out of bed! Thankfully Andrew home schools so this is not a serious issue as far as school, but most days it is a major battle just to get him out of bed! And as I mentioned before, for weeks I would physically sit him up and force him out of bed early each morning, thinking he would then sleep better at night. This did not help at all! He just got more physicaly exausted during the day, still trouble sleeping at night, and very crabby!

    I should also mention, every great once in a while, out of the blue, he will go to bed very early in the evening, like at 8:00pm, and sleep 10-11 hours straight through!! Then, just that quick, he is right back to the insomnia for weeks!

    And you are right. I don't think many people realize what it is like not to be able to sleep, even though you are tired! I can see the frustration it causes Andrew!!

    Dolly

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: sleeping pills?]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 12-17-02 04:42

    I have a thought...

    Yes, these kids have HCM, Yes they are on meds, BUT first of all they are teenagers! Teens tend to eat and sleep poorly - they play computer games or watch TV until all hours of the night/morning eat junk food and tend to hit high suger foods that may give them jolts of energy that they are then unable to sleep through...

    Lets look at the basics and work from there.

    Dolly,

    I do think talking to the Dr is a good idea... That is what he/she is there for.

    Ron,

    BRAVO for having a great reader! But maybe he should put down the book as it may be too much of a stimulant and may be keeping him awake? I think thousands of parents would love to have to tell there kids to put down the book....I fight to get mine to pick up a book (but she is 7).

    Wishing you all sweet dreams!

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: sleeping pills?]

    Author: Reenie Smith (---.snbrca.adelphia.net)

    Date: 12-17-02 05:25

    Guys,

    I have a suggestion, besides going to the doctor. (Although I still think you should definitely do that too!) My sister in law had an awful time getting to sleep and her doctor told her to try Benadryl to make her sleepy enough to fall asleep. It worked, but if she got woken she was unable to get back to sleep very easily. I know Benadryl is all right for people with HCM, so maybe it would work? But please talk to the doctor before you try anything over the counter, just in case.

    Reenie

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: sleeping pills?]

    Author: Sarah B. Board Moderator (12.144.99.---)

    Date: 12-17-02 06:53

    Don't tell anyone, but if I know I have to go to sleep at a certain time and I don't think I'm going to be able to fall asleep, I'll take a Benadryl. OR if I've screwed up my sleep schedule for whatever reason, I'll use one to help me reset myself back to normal.

    S

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: sleeping pills?]

    Author: Pat (---.d00832.dlup.digitaldune.net)

    Date: 12-17-02 08:11

    To all you frustrated parents,

    For what it's worth, a few years ago I read a research report in a professional journals that had found that the circadian rhythms of teenagers change (hormone changes & growth) and it is normal for them to stay up late and get up late. One of the recommendations was that high schools should change their schedules to start late in the morning. I wish I could provide the citation, but I cannot remember just where I read it. I do remember thinking it seemed to be a valid piece of research.

    Not to negate the need to check with your cardiologists to eliminate the possibility of untoward medication effects or something else!

    Good luck,

    Pat

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: sleeping pills?]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 12-17-02 11:47

    Pat, I read the same article...but I do not think they are going to change the school systems there hours.

    I would highly recommend that anyone having a problem sleeping they NOT self medicate... see your doctor and get the proper medications.

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: sleeping pills?]

    Author: AlecW (---.eisai.com)

    Date: 12-17-02 12:54

    Insomnia is frequently a symptom of depression, although the "classical" manifestation would be awakening very early in the morning and being unable to return to sleep. Kids may not realize they are depressed, and parents are not always attuned to this possibility either, instead attributing behavior problems to "teenager-hood." We sometimes forget that kids can get bummed out by chronic disease and the resulting modifications in lifestyle this frequently necessitates.

    Some child psychiatrists recommend melatonin (e.g. Melatonex) for insomnia. Very safe, very mild, but not always very effective.

    AlecW

    Not an HCM physician, but a physician with HCM

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: sleeping pills?]

    Author: Amelia Haynes (---.proxy.aol.com)

    Date: 12-17-02 17:04

    The only thing my cardiologist will allow is Benadryl which I do take when hot milk and 3 or 4 crackers will not do the job. However, sometimes it seems that nothing will help.

    Amelia Haynes

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: sleeping pills?]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 12-19-02 07:18

    AlecW -

    Welcome to the site, I do not believe I have seen you here before. You have a wonderful point and I thank you for sharing it.

    If you do not mind me asking...how long have you known about your HCM, and what field of medicine do you practice?

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: sleeping pills?]

    Author: AlecW (---.eisai.com)

    Date: 12-26-02 10:54

    Lisa,

    Actually we spoke about 2 years ago, when I was seeking a local (NYC) referral. You suggested I visit Dr. Mark Sherrid. I did, and I must say that I heartily second your endorsement.

    I am a pediatrician with additional subspecialty training in infectious diseases, and I spent several years caring for children with HIV infection and AIDS. I now work in the pharmaceutical industry, designing and supervising clinical trials of anti-infectives.

    I was first diagnosed with non-obstructive HCM in 1987, at age 35. When my cardiologist died and I went to another, I was told I had been misdiagnosed, and had no evidence of HCM. I went off meds and was okay for a number of years before I started having chest pain, which I denied as long as I could. I admitted to myself that I was symptomatic about 5 years ago. The echo verified the diagnosis of HCM, and the clean coronaries on angiogram confirmed that my symptoms were from HCM and not from coronary artery disease.

    I have experienced near-daily chest pain and shortness of breath with exertion for years. I've been on verapamil. I've participated in an NIH clinical trial comparing enalapril and/or losartan with placebo (if I expect people to participate in the clinical trials I design, the least I can do in return is participate in clinical trials myself!). Turns out that keeping my heart rate down with metoprolol works better than anything else I've taken.

    I hope you're not expecting me to come out with some words of wisdom, since I can't say anything particularly positive or upbeat about living with HCM. With the exception of the possible advantage I may enjoy, compared to laymen, in understand medical journals, being an MD doesn't give me any special insights into being a patient with HCM.

    My greatest regret is that I can't really do anything physical with my son. No bike rides or wilderness hikes. I can't even throw the baseball around for more than a few minutes. But like so many others with chronic diseases, I've learned to cope. I stop frequently when walking to catch my breath. I take the car to go distances that were once easily walkable. I try to avoid hills. I almost never run. I use the elevator even if I'm going only 1 flight. When traveling, I check my carry-on rather than shlep it around the airport. I use taxis instead of public transport. When I'm feeling particularly crummy I try to weasel my way out of taking the dog for his nightly constitutional. In addition, I go to work every day, do a lot of computer-related stuff with my kid, read voraciously, enjoy music and TV, make pottery, and participate in routine family zaniness. Since becoming symptomatic, my hypertrophied heart and I have been to the UK, Hungary, Italy, Belgium, Japan, and Australia. What's more, I finally have a legitimate reason for avoiding dancing, and I never have to shovel snow!

    Keep up the great work, Lisa; and my complements to the contributors to your board. They are a wonderful support resource for others, and with few exceptions, very good sources of reliable information as well.

    AlecW

    Not an HCM physician, but a physician with HCM
    NOTE: This is a post from the previous forum message board.

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