Currious to hear how all of you are doing that are currently taking requip.
My son, 15 years old, was just diagnosied with RLS after the gamot of test that you do to eliminate everything else; eeg, cat scan, x-rays, blood tests (no iron, calcium or mag defficieny found).
He has had nightime symptom since about age 12, worsening in the last six months and spilling over in to the day. At night, he has what appear to be seizures (but are not as per the eeg). When he is awake the "seizures" are not as bad but he complains of VERY severe pain in his right knee. He fits all the criteria for RLS except the complain of extreme pain is not that common from what I can tell.
Here is the kicker, he drives race cars. Now that he is having day time symptoms where he his leg and arms go into spasms we are wondering if he will have to forgo his choosen career.
He was given requip once before but .25 to be taken at bed time - obviously that was not the right way to prescribe it and it had no effect.
Our doctor did a lot of research on RLS and has now prescribed
.25 three times per day, morning, after school, bed time.
.5 three times per day the second week
.75 three times per day the third week
1.0 three times per day the fourth week
We are on day three and no results so far. Here are my questions:
1. Is it true that RLS rarely occurs when your mind is very active. He has never had a "fit" while racing and I wonder if it is because he is so focused.
2. How long does it take for you to see requip start to take effect. At what point should we give up and switch meds.
3. Do you find that the better quality of sleep you have at night, your more alert state during the day prevents day time episodes. (This is my theory - if you are not sleeping at night and are tired and relaxed during the day- you have more day time epidoses.)
4. What tricks are there for preventing day time episodes? It seems that talking or humming helps prevent epidodes during the day.
5. How much does avoiding caffine and salt benefit symptoms.
Requip questions
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ViewsAskew
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Austinracing, I'm sure others will be long shortly to offer their assistance. I'll answer what I can, but am also including links to other threads:
http://beta.restlesslegs.org/phpBB2/viewtopic.php?t=94
http://beta.restlesslegs.org/phpBB2/viewtopic.php?t=549
Many of us here believe that the only way to really ensure your care is to read and learn as much as you can! Both of these threads include an incredible amount of information. Reading posts here will also provide much insight.
In terms of your questions, here's what I know.
The schedule of increasing your doses slowly is standard for Requip. Teh problem is that it can take several weeks before you get to a dose that works. I'm curious about taking three times a day at that rate, though. I thought that was a typical Parkinson's schedule, but RLSers usually need a lot less Requip than Parkinson's patients do. Please go to the link to the So Cal Support Group (www.rlshelp.org) and check out what Dr Buchfurer says about Requip. His total doses are much smaller than this, I think. If you were to follow this schedule, in 4 weeks, he'd be taking 3 total mg of Requip and I think Dr Buchfurer says his patients take an average of .25 to 1.5 mg a day. You can even write him a question and he may respond. I would try it since he truly is an expert.
RLS is less likely when your mind is occupied (but not impossible
). Could be why he doesn't get an attack while driving.
As I mentioned above, people take varying amounts of Requip. Here's my personal belief: people with severe RLS are less likely to find a single drug that will completely counter the RLS on its own. Most of us here that are in that category are on 'cocktails' of two, three, or four meds. That said, there is a point when you decide it's not working. I'm not sure what that is; the doctors are better qualified to answer.
Interesting theory on the daytime episodes. This doesn't apply to me, but it may to others. Interesting to hear what they say. I have no tricks for preventing it during the day - it comes or it doesn't. Staying busy helps most of us, but you can't always be in motion or deep thought.
There are many theories about diet. Some people find it doesn't make a difference to have caffeine or not, others never touch it - probably have to find out what works for his body. Salt seems far-fetched to me, but if it works, go for it. If you go through the non-pharmacuetical messages, you'll find many interesting strategies people have found that work for them.
It would be great if you could get your son involved on the board. Many of the people here had RLS as children and many of them have RLS with pain. Some people find that talking to others that have been where they are is very comforting.
Ann
http://beta.restlesslegs.org/phpBB2/viewtopic.php?t=94
http://beta.restlesslegs.org/phpBB2/viewtopic.php?t=549
Many of us here believe that the only way to really ensure your care is to read and learn as much as you can! Both of these threads include an incredible amount of information. Reading posts here will also provide much insight.
In terms of your questions, here's what I know.
The schedule of increasing your doses slowly is standard for Requip. Teh problem is that it can take several weeks before you get to a dose that works. I'm curious about taking three times a day at that rate, though. I thought that was a typical Parkinson's schedule, but RLSers usually need a lot less Requip than Parkinson's patients do. Please go to the link to the So Cal Support Group (www.rlshelp.org) and check out what Dr Buchfurer says about Requip. His total doses are much smaller than this, I think. If you were to follow this schedule, in 4 weeks, he'd be taking 3 total mg of Requip and I think Dr Buchfurer says his patients take an average of .25 to 1.5 mg a day. You can even write him a question and he may respond. I would try it since he truly is an expert.
RLS is less likely when your mind is occupied (but not impossible
). Could be why he doesn't get an attack while driving.
As I mentioned above, people take varying amounts of Requip. Here's my personal belief: people with severe RLS are less likely to find a single drug that will completely counter the RLS on its own. Most of us here that are in that category are on 'cocktails' of two, three, or four meds. That said, there is a point when you decide it's not working. I'm not sure what that is; the doctors are better qualified to answer.
Interesting theory on the daytime episodes. This doesn't apply to me, but it may to others. Interesting to hear what they say. I have no tricks for preventing it during the day - it comes or it doesn't. Staying busy helps most of us, but you can't always be in motion or deep thought.
There are many theories about diet. Some people find it doesn't make a difference to have caffeine or not, others never touch it - probably have to find out what works for his body. Salt seems far-fetched to me, but if it works, go for it. If you go through the non-pharmacuetical messages, you'll find many interesting strategies people have found that work for them.
It would be great if you could get your son involved on the board. Many of the people here had RLS as children and many of them have RLS with pain. Some people find that talking to others that have been where they are is very comforting.
Ann
re: requip questions
HELLO,
SORRY TO HEAR THIS ABOUT YOUR SON, I HAVE HAD IT SINCE I WAS 5 YRS OLD, I HAVE A REAL SEVERE CASE NOW. I TRIED REQUIP AND MIREPEX IN VERY HIGH DOSES AND IT NEVER DID A THING, I HAVE IT THE MINUTE I OPEN MY EYES IN THE MORNING IF I DON'T HAVE MEDS THAT WILL LAST TILL MY NEXT DOSE.
I' M SURE SOMETHING LIKE RACE CAR DRIVING COULD KEEP HIS MIND OCCUPIED FOR A WHILE, BUT WITH ME STRESS OR EVEN ME JUST THINKING OF MY LEGS STARTING UP CAN TRIGGER IT.
HE WILL HAVE TO FIND WHAT IS RIGHT FOR HIM, AND LIKE ANN SAID IT USUALLY TAKES MORE THAN ONE.
I HAVE TALKED TO PEOPLE THAT HAVE SAID 1 PILL OF REQUIP AT NIGHT CHANGED THEIR LIFE, IF ONLY I WAS THAT LUCKY,
FOR ME ONLY PAIN MEDS WORKED, AND KLONOPIN A PLUS, BUT YOU HATE TO HAVE TO GO THERE IF SOMETHING ELSE CAN WORK FOR NOW,
MY DAUGHTER IS 7 YRS AND HAS STARTED CRYING WITH HER LEGS AT NIGHT, I HATE IT FOR HER,
AT LEAST YOU HAVE A DOCTOR THAT HAS HEARD OF IT, I GIVE HER MOTRIN AND MAKE HER TAKE A HOT BATH,
HOPEFULLY SOME ONE OUT THERE WILL AVENTUALLY FIND OUT HOW IMPORTANT THIS IS,
GOOD LUCK TO YOU AND YOUR SON
KATHY
SORRY TO HEAR THIS ABOUT YOUR SON, I HAVE HAD IT SINCE I WAS 5 YRS OLD, I HAVE A REAL SEVERE CASE NOW. I TRIED REQUIP AND MIREPEX IN VERY HIGH DOSES AND IT NEVER DID A THING, I HAVE IT THE MINUTE I OPEN MY EYES IN THE MORNING IF I DON'T HAVE MEDS THAT WILL LAST TILL MY NEXT DOSE.
I' M SURE SOMETHING LIKE RACE CAR DRIVING COULD KEEP HIS MIND OCCUPIED FOR A WHILE, BUT WITH ME STRESS OR EVEN ME JUST THINKING OF MY LEGS STARTING UP CAN TRIGGER IT.
HE WILL HAVE TO FIND WHAT IS RIGHT FOR HIM, AND LIKE ANN SAID IT USUALLY TAKES MORE THAN ONE.
I HAVE TALKED TO PEOPLE THAT HAVE SAID 1 PILL OF REQUIP AT NIGHT CHANGED THEIR LIFE, IF ONLY I WAS THAT LUCKY,
FOR ME ONLY PAIN MEDS WORKED, AND KLONOPIN A PLUS, BUT YOU HATE TO HAVE TO GO THERE IF SOMETHING ELSE CAN WORK FOR NOW,
MY DAUGHTER IS 7 YRS AND HAS STARTED CRYING WITH HER LEGS AT NIGHT, I HATE IT FOR HER,
AT LEAST YOU HAVE A DOCTOR THAT HAS HEARD OF IT, I GIVE HER MOTRIN AND MAKE HER TAKE A HOT BATH,
HOPEFULLY SOME ONE OUT THERE WILL AVENTUALLY FIND OUT HOW IMPORTANT THIS IS,
GOOD LUCK TO YOU AND YOUR SON
KATHY
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Austinracing
- Posts: 5
- Joined: Thu May 19, 2005 2:29 pm
Thanks
Thanks for the responses! I have read just about every single thing posted in the internet on RLS and PLMD along with hours of reading message boards like this one.
It sounds like it may take some time to come up with right meds or combination of meds to at least lessen the symptoms and maybe prevent day time episodes. I hope that we can find something that works for him. To have to live with this and to also have it rob him of his dreams of driving would be horrible.
He seeing a nuerologist next week who specializes in sleep disorders including RLS, although he has treated very few teen agers.
Do others of you find it odd that they have him taking .25mg three times per day upping it slowly till he will be taking 1mg three times per day? That does appear to be a Parkensens kind of treatement plan do you think they did that because he has day time symptoms? Also, that dosage is still a lot less than what they give Parkensons patients.
Any thoughts you all have are welcomed!
It sounds like it may take some time to come up with right meds or combination of meds to at least lessen the symptoms and maybe prevent day time episodes. I hope that we can find something that works for him. To have to live with this and to also have it rob him of his dreams of driving would be horrible.
He seeing a nuerologist next week who specializes in sleep disorders including RLS, although he has treated very few teen agers.
Do others of you find it odd that they have him taking .25mg three times per day upping it slowly till he will be taking 1mg three times per day? That does appear to be a Parkensens kind of treatement plan do you think they did that because he has day time symptoms? Also, that dosage is still a lot less than what they give Parkensons patients.
Any thoughts you all have are welcomed!
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cornelia
Austinmind, I too think that 3 mg is an awful lot of Requip. I have severe RLS 24/7 and am on 1mg. Dr. Buchfuhrer of the Cal. supportgroup always says that most people need 4 to 6 of the 0.25 mg pills. My neuro thinks so too. If that is stilll not working, then it is usually better to add a med from another group. I myself have a combo of Requip, Neurontin and Ultram. It is better to have a few meds on a low dose than 1 med on a high dose.
Take the RLS Algorithm with you to the neuro.
Good luck, Corrie
Take the RLS Algorithm with you to the neuro.
Good luck, Corrie
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Austinracing
- Posts: 5
- Joined: Thu May 19, 2005 2:29 pm