my father has "servere" rls..help....any one else?

[kristin]

my father is 73 and has been diagnosed with "servere" rls. it is starting to really effect him. no sleep ..takes carb/levo up to 600mg a day.. has become pretty severe at nite... if he stays ahead of the cramps before bed, and sometimes ambien.. he will get to sleep but everything wears off between 1-3am and then he's up. anyone else with a severe case and any suggestions... sleepless in minnesota.. <><

[KimberlyGibson]

my father is 73 and has been diagnosed with "servere" rls. it is starting to really effect him. no sleep ..takes carb/levo up to 600mg a day.. has become pretty severe at nite... if he stays ahead of the cramps before bed, and sometimes ambien.. he will get to sleep but everything wears off between 1-3am and then he's up. anyone else with a severe case and any suggestions... sleepless in minnesota.. <><

Hi Kristin, I'm sorry to hear about your father's condition. I too have an extremely severe case of RLS with periodic limb movement that is so intense I have injured myself from the uncontrolled 'jerking'.

I think what works for some people may or may not work for others, including nightime rituals and medications. I am 48 and have experimented with various meds and combinations of meds for many years. But even with those meds and sticking to a strict nighttime routine, I only get 4 - 5 hours of interrupted sleep. I have severe movement (purposeful and uncontrolled) that can start at any time throughout the day (especially if I am tired/sleepy) but that prevents the onset of sleep for approximately 6 hours every night regardless of the time I begin to relax. Here is my routine:

4pm - Meds (take three 300mg neurontin and one 0.25mg mirapex)
5 - 6 pm - torture (movement) begins, some purposeful, some uncontrollable, may have to do a lot of walking
7pm - Meds (repeat the same)
7:30pm - watch tv, music videos or use computer to keep visual focus and 'subject' must be interesting enough to take mind OFF of movement. Usually this is when I rock. (I am a rocker back and forth, voluntary movement)
8:00 - Meds (take 1 darvocet for pain)
10:00 pm - If I am exhausted enough from the movement and involuntary movement has subsided, I MIGHT fall asleep. If I do, it is usually while watching tv.
Every hour and a half to two hours I wake. It can sometimes be hours before I fall back to sleep.

[ViewsAskew]

I agree with Kimberly that we are all different. The best things to do, in my opinion, are

1. learn as much as you can--this is so you know if your/his doc is doing the best/right things. It also allows you to make suggestions and take info to your doc. Because this is so variable person to person, few docs realize how many different therapies can be used. This knowledge also allows you to ask questions intelligently.

2. make sure someone goes with him to the doctor's appt - this helps ensure he understands the doc and that the doc understands how bad it is

3. don't give up! Dr Buchfurer, an RLS specialist, believes that everyone with RLS can get a good quality of life IF they get the right doctor and the right treatment. He may have to change meds more than once, and he may have to play with doses, or even take two or three meds together.

4. Find a new doc if you need to - don't hesitate.

I couldn't function a few years ago. Now I'm OK. I don't know if I'll ever be 100%, but I have most of my life back. I can't take the dopamine agonists that Kimberly and your dad are taking. I've taken them both and they made my RLS much worse (a known side effect). I've also tried Neurontin and many others, none of which worked. While trying to find something that worked, I thought I would go crazy. But once I did, my life because so much better.

It's great you are helping your dad like this. Stay around, read some posts, and start that education . I think it will be worth it. The New to RLS section has two "sticky" posts with some great info. Definitely a good place to start.

Ann

[lshcat]

Hi, I too experimented a LOT with different meds and what worked for me I know doesn't work for some.. Tylenol #3. (Tylenol with codeine) It has no side effects for me except make me a bit tired.. but I only take it before bed so it's great. I've also noticed I feel better when I've had broccoli for dinner! But I have always had an iron-deficiency.. my body doesn't absorb it welll.. I do think it's all pretty much vitamin related.. deficiencies in the body so learn your Dad's nutritional history and so forth.. maybe you can pin it down. Good luck.

[waterloo2]

Hi all

Ive bruised myself before today because of rls
ive been jumping all day today.

gill

[upallnite]

I haven't been here for a while, and I just read your question. About 1 year ago I started taking requip 1mg 3 times a day. At night about a half hour before I goto bed I take 200 mg of Trazadone to help me sleep. I have been doing much better since I started the routine. I sometimes get 7 hours sleep!! Before that I was lucky to get 3 hours. The only side effect I have is nausea, but I find it a small price to pay for sleep and sanity. I hope this can help you.