My RLS Mountain....

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
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lyndarae
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Postby lyndarae » Sat Jan 01, 2005 9:40 pm

HAPPY NEW YEAR!!!! I just have to jump in here and give my thanks to so many people. I too feel like a new women. I feel so much stronger and in control of my fears. And I'm not so alone anymore, thats the really big one for me. So many nights I walked alone until I found you all. I feel so blessed. You have all said such kind words about me and I started to believe you. I can and will do whatever it is I want to this year, I might even go to college something I have feared always SCHOOL!!! It's hard to keep up when you miss so many days in bed with growing pains!!! I see great things comming my way, and I so look forward to meeting all of you in Orlando!! I will be the one with bells on~~~~~~~~~~~~~~~~~~LYndarae

Ppump

RLS answer!!!

Postby Ppump » Tue Jul 12, 2005 6:02 am

The answer to RLS has nothing to do with drugs. After I gained a lot of weight I went on a crash diet and to my surprise the RLS went away. I researched the web and found after many hours the answer. Cut your intake of two items and it will disappear. SALT AND BEEF!! I have had no RLS since I drastically cut my intake of salt. Best of luck to you.

becat
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Hi and welcome

Postby becat » Wed Jul 13, 2005 3:14 am

n/a
Last edited by becat on Mon Dec 28, 2009 2:12 am, edited 1 time in total.

heidi

can you update us on what meds are working for you now?

Postby heidi » Tue Jul 26, 2005 8:17 pm

becat wrote:Medications are no cure. However, they do help me live a good Quality of Life. ........THIS IS MY POINT TO YOU..............
I've had RLS in a painful form since I was a toddler..........No medications are no cure. But they probably saved my life in many ways.


becat-
I am just logging on today b/c my mom's RLS has worsened, she's off Requip and Mirapex now as they didn't seem to help after 8+ years, have tried vicodan at night when the pain hits- but she gets moderate to poor relief from that. Last week she was put on Duragesic patch (fentanyl) (and about 2 yrs ago that seemed to work, but made her really groggy ? i forget! been so many meds) and now she's gotten sick (nasuea/vomiting/diarhhea) from *maybe* the lunesta (new sleeping pill that didn't work at all), and the patch so now dr has discontinued those today- she's back to just vicodin for breakthru pain. she has slept a few hours each night- racked w/ pain, super fatigued. am curious about the relief you are getting- is it still working? we have an appt for her at mayo clinic in the fall.....
thanks! be well.

becat
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What a good kid

Postby becat » Sat Jul 30, 2005 4:21 am

n/a
Last edited by becat on Mon Dec 28, 2009 2:12 am, edited 1 time in total.

heidi

thanks for your reply

Postby heidi » Mon Aug 01, 2005 2:27 pm

appreciate your writing back. i agree, no one should have to suffer in pain and good pain management is HARD to come by! shouldn't be so. i am a social worker who has long experience in treating folks addicted to drugs/alcohol and i understand the diff btwn addiction/dependence and i am not worried about my mom being addicted to anything. she does [/b[b]]need a better long-acting pain med though. she hardly sleeps at all and is racked w/ pain every night. in an effort to get sleep on fri night, she took ambien along w/ vicodin and it looped her pretty bad. she has had 5 hip replacement surgeries (yes 5!) and so combined w/ the RLS she has a really hard time most days/nights. we are still seeking a solution!

i'll keep watch on these boards b/c i hope to find possible answers here!
thanks and best wishes-
heidi

becat
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Sleep Study

Postby becat » Thu Aug 25, 2005 11:15 pm

n/a
Last edited by becat on Mon Dec 28, 2009 2:13 am, edited 1 time in total.

ViewsAskew
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Postby ViewsAskew » Thu Aug 25, 2005 11:30 pm

I'm glad you had it done and that it all worked out well. They can get great information out of a good test, and it sounds like you had a good group and good test. Hopefully the results will give you and your doc the information needed to find out how you can get a good night's sleep. You've been waiting long enough.

Ann

jumpyowl
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Hi, Becat!

Postby jumpyowl » Fri Aug 26, 2005 12:51 am

I am so sorry that I cannot post more often. Both mentally and physically I am kept busy by the "establishment" (local I hope) which is hell-bent in trying to prove that I am mentally ill. The head honcho is a fork-tonged character it took me awhile to figure out. It is the medications I have to be careful with because antipsychotics are no toys. But this is not about me but about your sleep test.

Ann is right, they have come a long way in sleep labs since 1990. It appears (to her at least) that yours is one of the more modern one. This is good because many of them only use the technique of somnography to determine whether or not you have sleep apnea or hypoapnea. The oxygen saturation of haemoglobin (in per cent) is important so look for that figure in the report.

I hope that they looked at other things like arousals due to periodic leg movement. Also how much deep sleep (stage 3-4) you are getting during the night. Please let us know.

If there is one thing I have learned during this hectic past six months is that it is unbelievable how much physical symptoms and bodily functions can be influenced by the mental or emotional state and to some extent, by brain chemistry. This insight helped someone dear to me. My daughter is off most of her previous medicatons including the major painkiller and feels well enough to return to college which she had to leave 12 years ago.

When or possibly if I succeed to clear my "record" (until then whatever I say has no value), I will "pontificate" further on such experiences that were indeed an eye opener for me. It is unfortunate that physicians on the physical and mental side do not communicate better because medical treatments would become more effective. However, I am sure that it will come eventually.

OOO xxx :)

Your faithful
Jumpy Owl

becat
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Joined: Thu Apr 29, 2004 11:41 pm

Humble at best

Postby becat » Fri Aug 26, 2005 2:48 am

Thank you both for your support. I did put it off a bit......But Jumy is right about the importance of getting a hold of one's life in order to sort it out.
Jumpy, I realize that you visit and often do not have time to post. I accept your XXXXs and OOOOs in the most humble way. Thank you, thank you.
I am just blown away to hear that your daughter is going back to college. :D :D :) I'm so happy for her, she's had a tough go of it for a while now. I'm happy for you as well.
Yes, I will try to get a copy of the report and let you know what the results are.
blood ferritin is at 9 right now. I'm continuing the vitamins, a slow but hopeful process. Cal/Mag levels great and everything else is below or normal and well with my blood work.
Jumpy your thoughts are always welcome. You know that my prayers and thoughts stay with you. My hugs and sincere hope that your hard work is realized.
Right back at ya........XXXX OOOO
Last edited by becat on Mon Dec 28, 2009 2:13 am, edited 1 time in total.

ViewsAskew
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Postby ViewsAskew » Fri Aug 26, 2005 3:42 am

Ah, well, the joys of communication on a message board. I meant that it has taken too long for you to get good sleep, not that you waited too long to take the test. . . :oops:

Jumpy, glad to see a post and am elated for your daughter. All of you must be joyful at her progress. Truly a remarkable experience. I hope that you are the receiver of the next remarkable experience and that all finds itself better in your life soon.

Ann

becat
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Joined: Thu Apr 29, 2004 11:41 pm

LOL

Postby becat » Fri Aug 26, 2005 7:33 pm

Hi Ann,
No offense taken.......LOL I'm probably the worse person ever about testing......I say NO all too often for my own good. I did not see the true benefit of a sleep study until last year. Maybe it's better stated this way.......I couldn't see the benefit of a sleep study when I did not sleep. Just the thought of going through a night like that, without being able to control my surroundings sent me into a tizzy.
However, I'm better off showing the doctor what really happens.
Yes, I have enjoyed my new sleep patterns and the excellent effects something so simply has made in my life. I truely can not believe that I went for 8-9 yrs living without sleep and the healing rest. For some wonderful reason, since my husband surgery, I've been able to get to bed (with meds) at 10:30 - 11:30 most nights. I'm not always staying asleep, but what a change and a gift. I know you total understand.
I do have to stay up much later with the teenagers being out and with their work schedules, but try to let hubby do that if I can.
The best thing ever was our bedtime routine conversation. It just came to me one night early this summer. Having those little things every night gives my brain the signal that rest is part of the routine. It's Far better to adjust those things than to feel like the bedroom is a place of battle. Lucky for me hubby can sleep anywhere, anytime, and with the lights on.
I'm not sure I'm making it into the good REM sleep, but the results will tell. I'm back on the vitamins and supplements in a huge way as well. I'm hoping that by Christmas I can raise the ferritin levels and counteract the effects of the medications .....best as possible.
thanks for the support and hugs to ya.

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jan3213
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Postby jan3213 » Fri Aug 26, 2005 9:07 pm

It's Jan

Just wanted to say HI JUMPY! You sound great! Wonderful news about Gloria, too! So good to hear from you.

And, Becat and Ann--aren't sleep studies just the MOST FUN?! Glad it's over for you, Becat. Anxious to hear the results.

Hugs
Jannie
No one is alone who had friends.

jumpyowl
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Hello, Jannie:

Postby jumpyowl » Fri Aug 26, 2005 11:13 pm

I hope everyhing is alright with you and your loved ones,

As ever, :)
Jumpy Owl

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

results

Postby becat » Thu Sep 01, 2005 1:59 am

n/a
Last edited by becat on Mon Dec 28, 2009 2:14 am, edited 1 time in total.


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