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  • Restless Leg Syndrome (RLS)

    [Restless Leg Syndrome (RLS)]

    Author: Dave Johnson (---.lr.anc.net)

    Date: 12-26-02 23:11

    Well, here I am again, wide awake at 2:30 am because my foot won't stop twitching. Has anybody out there heard of RLS (restless leg syndrome)? Check out this article which says in part: Only one other name would more precisely characterize RLS, and that's "creepy-crawly syndrome." Most victims resort to "creepy-crawly" to describe the sensation in their legs that forces them to move while sitting in the theater, an airplane seat, a car, or (worst of all) lying in bed and trying to sleep. (Other words used to describe RLS include prickly, jittery, like ants crawling inside, pulling, tingling, and, occasionally, painful.)

    (full article[html]http://www.findarticles.com/cf_dls/m1189/n6_v270/21279895/p1/article.jhtml?term=[/html]

    At first I thought this was a result of my bad circulation from HCM, but it looks like it may not be related at all. I intend to get more info when I'm at the NIH next month, but I'm curious if there's any link between HCM and RLS.

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

    [Re: Restless Leg Syndrome (RLS)]

    Author: Lynn Stewart (---.dsl.dytnoh.ameritech.net)

    Date: 12-27-02 05:18

    Hi Dave,

    I'm with you on having the restless legs and find it to usually be a nightly issue. My dad and brother, who do not have HCM (actually we can't find anyone on either side of my family who has it/had it) also suffers from it. Additionally my dad has problems with something called peripheral neuropathy causing his feet to become ice cold and numb but the doctors haven't linked the two conditions. I've not found that more exercise during the day impacts my legs at night and am always surprised when I can nap during the afternoon and not have my legs bother me but a long drive during the day will cause it to act up.

    My brother has found that deep knee bends just before bed help him. I usually find relief by spending a few minutes curled up in the fetal position with my knees under me or walking the floors at night. My dad finds sleeping on the floor relieves his jumpiness (as do I as a last resort). Additionally my brother and I have had that restless feeling hit our arms at night as well and have had to 'sleep' on them. My only problem with sleeping on my arms and legs is that with my beta blockers they seem to 'fall asleep' on me easily.

    OK - not much of an answer on a HCM connection from me but at least you have an 'amen' corner with it. I did find this website a while ago on RLS, maybe it can help too.

    http://www.rls.org/

    Here's to pacing the floors at night,

    Lynn

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

    [Re: Restless Leg Syndrome (RLS)]

    Author: Mary (---.wi.rr.com)

    Date: 12-27-02 05:24

    yes, I have rls also. In fact, even though it usually shows up later in life I can clearly remember having it as a young child, and ever since. Interestingly, the website I looked at clearly states that some medications--including calcium channel blockers--can make symptoms much worse. I've found that lying on the side where the leg is twitching the most often relieves symptoms. And sometimes it's better than others--for example I've been pretty much twitch-free for a couple of months now.

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

    [Re: Restless Leg Syndrome (RLS)]

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

    Date: 12-27-02 05:58

    I certainly understand your posting since I have had similar problems for several years. Neuropathy could be the cause of your symptoms. Symptoms caused by neuropathies include numbness, tingling, pain, or muscle weakness depending on the nerves affected. In my case a very bad spine. I take a drug called neurontin which is very helpful. Before diagnosis, or if I do not take the medication, it was/is literally impossible to sit in a theater seat and going to sleep was a problem because I could not be still. This can be caused by several things best determined by your doctor. If you go to key word "neuropathy" you will find info posted by the Cleveland Clinic that may help you to better understand.

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

    [Re: Restless Leg Syndrome (RLS)]

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

    Date: 12-27-02 06:25

    Dear Dave,

    I'm assuming you've ruled out an allergy? I get this feeling if I've had compazine. Perhaps you are having a reaction to beta-blockers or some other medication? While I don't advise stopping any medications, it is something to talk to your doctor about and come up with a plan to test it out (however, going cold turkey with beta-blockers can cause a rebound effect, so please don't do it--be forewarned that even some doctors don't know this).

    I'm curious to know why you have chosend the NIH? Have you been a patient there a long time? They are quite research focused, and while a few people here see them without any problem, there have been some serious issues raised about their idea of informed consent and their idea of a treatment protocol. Please call Lisa at 973-983-7429 if you want to get the whole story on the NIH.

    There are several other HCM centers on the east coast that the HCMA recommends. We _don't_ recommend the NIH.

    S

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

    [Re: Restless Leg Syndrome (RLS)]

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

    Date: 12-27-02 08:29

    Hi. I read this with great interest. I have had periods of jumpy legs and not being able to sleep because of it. It's so very frustrating! But the weirdest part is that I thought I was just strange. I don't have HCM but I do take verapamil daily and have for years for other arrhythmia problems. Now I have to wonder if that had anything to do with my legs driving my nuts. Could be. If I start feeling weird again maybe I'll talk to the doc about a meds change. But for now, haven't twitched in a while, so will let it all ride. Good luck to all of you.

    Reenie

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

    [Re: Restless Leg Syndrome (RLS)]

    Author: Dave Johnson (---.lr.anc.net)

    Date: 01-05-03 18:32

    Sarah -

    The NIH is has the only program I know of where I can get 'checked out' free of charge. I've tried to call the number you gave, left a message, but haven't heard back (that was about a week ago). I'll try again tomorrow. My understanding of the program is that it is strictly for observation/research and not for treatment - being research oriented more than patient oriented. I'm kind of new to this and am still learning alot about HCM so I'd appreciate any suggestions. My local cardiologist has been very aggressive in becoming educated on HCM - he also thought the NIH would be good, so long as they don't make any radical changes in my current treatment.

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

    [Re: Restless Leg Syndrome (RLS)]

    Author: Linda, Bd of Directors (---.wmnsmd.adelphia.net)

    Date: 01-06-03 03:57

    Dave, If you choose to go to the NIH, go with lots of information, ready to ask lots of questions. Come home with suggestions and discuss them with your cardiologist. It sounds like he is interested in learning and will help you out in choosing a treatment plan. If you talk to Lisa, she can provide you with the latest info on treatment options. NIH treatment options are limited to the protocols they have in effect at the time. They cannot offer a treatment they are not budgeted or authorized by protocol. Even it is free of charge, you may not get the best care possible as you will not have offered the whole range of options. I would hope that all options will be explained to you, even those not available at the NIH, but if you do not go with a base knowledge of all options, you won't know if you were given all the info. Patients have to watch out for themselves, not just assume someone else is doing that for them. Of course, that goes for treatment for any condition at any facility. Good luck - Linda
    NOTE: This is a post from the previous forum message board.

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