Any Requip/Neurontin Users willing to share?

[PLMSufferer]

I am a 55-year old female recently diagnosed with PLMS. I had a hard time while taking my initial therapy--(maximum 1 mg)-- Requip: I was crazy with LACK of sleep on it - just the opposite effect I was supposed to have. So I was told to add Neurontin.

Now I am on 400mg of Neurontin and 0.75 mg Requip nightly. However, I seem to be developing severe leg aches during the night and early morning PLUS am moving my legs around a lot in the evening (as I type this). I never had either of these symptoms before. Could it be that the suppression of movement at night is now happening earlier? (I read an article about this possibility - it is called augmentation.)

I am interested in hearing from anyone who has experience with:
* Requip and /or Neurontin for PLMS including dosages you are on
* Timing of doses - I've read that patients have started their dosing early (4 pm) whereas I take mine at bedtime [possibly because of augmentation (see following).
* Augmentation (earlier start of daily symptoms with use of L dopa).
Thanks kindly for any feedback you can provide. Thanks also to this forum!!

[<GG>]

Hi I'm new here. Could you please tell me what PLMD stands for. I'm also 55 & was dd was FM in 1997 but it has gotten much worst in the last year.

I'm on neurontin for fibromyalgia pain. I take 1 300mg at 10AM. Does make me feel light headed & trippy but is working for my pain. Also take Flexeril twice a day and Ambien at bedtime. But does not work for the fatigue which is awful right now.

GG

[<ViewsAskew>]

This is a great site, but not an active RLS/PLMD board. I hope this is not a no-no: try the following sites:

rls.org - great site with a message board with over 500 members; it's my favorite

rlshelp.org - great info on meds and other things

Yahoo - there are several support groups on Yahoo that you can join - the one with over 1000 members is very active

Oh, and to the other poster, PLMD stands for periodic limb movement disorder.

[PLMSufferer]

Thank you, Views Askew, for your further information. I appreciate the candor and other leads.

[<sophie>]

Hi I take 6 mgs of requip before bed time. OF COURSE I take other meds but requip for PLM. 75mg clompramine for restless leg sydrome, I find requip helps me, the only downside is I have to increase evey two months because I become tollorent to the drug. I have just commenced Iran therepy to see if it helps. apperently it helps some people. I AM going to try it for three months and see how it goes. IT HAS BEEN RECOMMENDED by my sleep doc. Expecting mothers have found PLM AND RLS has improved once they commenced iran tablets. I take a low dose why not give it a go, It cant hurt you. [as long as you take a low dose] I have only been on it a week so I cant recommend it myself yet, but I think things have improved. Good luck.

[DMR]

I to am taking neurontin 1200 mg. at night. I was taking 600 mg. 3 times a day but with several other meds. i was falling asleep at the drop of a hat. I tried the Requip but it made my RLS worse and had to stop that. Apoyken right now works the best for me when they are really bad. It's an injection that I give myself but I can only take so much a day and it is very expensive. A also take methadone every night about 6 pm. I also have fibro. and sleep apeana and should't be taking some of the meds. I take because of that but sometimes I just have to get some rest. One of the things that I did was buy a thermapedic bed and it has helped some. My doctor says that is because it helps hold in the body heat and doesn't give your legs a chance to get cold. Of course, we have to keep the house cold at night so that we can be comfortable enough to sleep. I also take Mirapex 1.5 mg. 3 times a day. I feel like I am giving up sometning with the sleep apeana by taking the other meds. but sometimes I just have to get some rest. I would be interested if anyone has it this bad and what they do for theirs. I would appreicate any help.

[Paul B]

For the past two weeks I have been taking 0.5 mg of Requip along with 0.1 mg of Clonidine about an hour before bedtime. As far as I can tell it has stopped the PLMD. I hope I don't have to keep escalating the dose to achieve the same effect.

[ January 28, 2005: Message edited by: Paul B ]

[<no meds>]

I don't have a LM problem, but due to deterioration of neck vertibrae I take up to 1800 mg's of neurontin a day to help prevent headaches. Have been on this for probably 10 years. No side effects from it at all. I can take 900 mg's at a time.

[Maglady5]

About 3 weeks ago, my PA put me on Equip at my request. I have had severe RLS and feel it is the main source of my sleeplessness. Until now, I have taken Ultram which was helpful but only about 80% effective and, when it wore off, I would have to wait until it got going again. I started with .25 mg. 3 x a day, week two - .50 mg. 3 x a day and am now on week 3 at .75 mg 3 x a day. Every time I "up" the doseage I have very sleepy periods but after day 3, I lose that effect. So far, I still have had to take Ultram 1 time, about 2 AM (rather han 2 .50 mg. 3 x) I have hopes that this will do the trick an am able to stop the Ultram all together. I heard about this on the TV news and followed up with the FDA Website, printing off copy of the narrative and bringing it to her. She had not heard of using this medication for RLS. So far, no RLS during the day (at the movies) or early in the evening (at Bingo). What is the other medication you are writing about and why did you have to add that.

[Guest]

Hi I just started requip and it seems to be helping because I have severe leg jerks but neurontin I had been taking for 13 years and I couldn't take it any more. My sleep disorder doctor doesn't like it but I was put on neurontin for something I didn't have. On requip I take 0.25 at night and neurontin I was on 800 mg three times a day in the end but you you what might work for one person may not work for another. I never used a stimulant before and I felt scared but for myself I knew I had to try because I couldn't keep go on feeling this way any more. If I could be of some help let me know Kim

[Loryj]

I saw a specialist at the Mayo Clinic for some relief from my RLS. At first he prescribed Requip, it didn't seem to be of much help & was quite expensive. He then switched me to Amantadine, less expensive in capsule form & 20 mg tablet of Elavil.. The Elavil seems to give me some 4 hours of sleep, sometimes more. I think I am getting the most help since I increased my magnesium intake to 750 mg along with 1500 mg of calcium. My RLS is not a nightly occurence, but when it hits it is quite annoying. Going to bed usually helps, but not always. javascript:emoticon('')
Smile

[Teri-giest]

I had been on Mirapex for RLS and wanted to try Requip. Within 18 hours of taking it, my symptoms were greatly exaggerated and started at about 3 pm. I took some Requip at that time, and the symptoms abated quickly. At 9 am the next morning, they came back with a vengeance. I'm now back on Mirapex.

[Ruby-Duby]

About a year ago I was put on Neurontin-1200 mg- each night for sleeping. It was great, helping me to stay awake during the day after a year of basically no sleep. I had a sleep test showing arousals of about 70 an hour due to limb movements. I was first put on antidepressants since I felt so bad and so tired. they didn't help so I stopped them. a doctor I saw before having surgery said all I needed was to get some sleep so he put me on the neurontin.

It helped for about 6 months and then didn't work very well any more. I kept waking up. He added mirapex (.50 each night). It did not help the sleeping problem and I felt terrible. It drove me crazy even to hold the newspaper and try to read it. When he wanted to add more mirapex during the day I stopped seeing him and went back to my nurse practicioner whose husband also has RLS. She started me on Requip (1 mg) at night and added lunesta (3 mg) at bedtime. the requip makes me weak feeling about 30 min after taking it. I go to bed at 10 pm and add the lunesta along with a Tylenol PM to help me fall asleep. I was informed, after asking, by the RLS dr. online that I could add neurontin to the lunesta since I am still not sleeping well.

At least during the day I am not as tired as I was without taking anything for the legs and arms/sleep.

[Guest]

[Snuffles]

I was prescribed Requip for RLS by my sleep specialist. On the third day, I started noticing a severe itching on the bottom of my feet. I could not get any relief. That night, I noticed an itching and burning in my mouth. On the fourth day, the bottom of my feet broke out in a severe rash. I could not even put my feet down. My mouth was so sore and my tongue was so swollen, I could not eat. My legs and ankles are very swollen. I finally realized that I was having a reaction to the Requip. Benedryl did no help. If you read up on the side effects, there are so many it seems that one is taking poison. I personally believe that all the kinks were not worked out prior to placing Requip on the market. I finally got an appointment with my doctor today and I certainly hope she can help.