Sleepless in California

[Rlskid]

I've been taking pramipexole for about 2 years and I've always suspected that it's causing me sleepless nights I can only sleep about 3 hours a night. Having a sleep study done at the hospital soon but after reading many of these posts I've known what the problem is for a long time and it is the pramipexole so my sleep study will probably be useless restless legs is a almost hopeless condition I'm wondering if I should just go on disability because I had to quit my last job because of it not sure what to do next if anybody has any advice I would greatly appreciate it.

[bauerannec]

Hi,

The only thing I have taken for my restless toes syndrome is Ropinirole. I would suggest that you talk to your Doctor about using Ropinirole.It has helped me, my Doctor started out on a low dosage then increased it .I take it about 3 hours before going to bed, I also take antihistamines (because my husband snores),and that also helps me to sleep .If you try the ropinirole be sure to take it BEFORE the rls starts ,I say that because several times I waited and I regretted it because the restless toes kept me awake, so after that I alway's try to take my ropinirole before my toes get restless.

when nothing else helps I use a lotion that's name is TWO OLD GOATS ,and it helps with arthritis ,I've massaged my toes with this lotion and finally got to sleep.Here in Houston,tx I buy it at walmart,a hardware store.Just ask if they sell a lotion called Two Old Goats it's in a dark blue bottle ,there's also a cream. It helps me and if you try it ,I hope it helps you too !

[marsha2306 in reply to bauerannec]

What antihistamine do you take? Most are contraindicated for RLS.

[bauerannec in reply to marsha2306]

Hi Marsha,

I take Benadryl ( I usually buy the store brand because it's cheaper and the store brand is the same thing as Benadryl).

I take the ropinirole about 3 hours before going to bed,then right before going to bed I take two Benadryl's,which helps me to go to sleep( if my restless toes haven't started moving.

If you need to take antihistamines during the day try taking Claritin non drowsy antihistamines.

I hope I've helped ,Good Luck !

Annelle

[involuntarydancer in reply to bauerannec]

Annelle, you could try taking a break from the Benedryl for a few days to see if there is any improvement in your condition. Benedryl is well documented as making rls worse. Many anti-histamines do. Maybe you could sleep away from your husband for a few days to avoid the snoring.

[Parminter]

Hello Riskid, I sympathise.

It is certainly the meds - I was sleepless for many years until I stopped pramipexole and started methadone. The chronic insomnia is seldom talked about, it clearly does not affect all of us, but years of my life were thrown away. And it is one of the major side effects listed in the package insert!

If you are in California I suggest you get in touch with Doctor Marc Buchfuhrer through rlshelp.org, where there is advice on how to get an appointment with the Stanford University RLS Centre of Excellence.

Doctor Buchfuhrer is one of the most clued-up experts in RLS and opioids.

Your misery can be changed overnight.

[sookie53]

Good morning yes it is a very big problem that you have to go into work when you slept maybe 2 hours then threw that for a long time I am not 65 yes ask your doctor it could be a disability that you can go on disability pramipixol I have not been able to sleep for a long time. I wish you lots of luck I've had restless leg syndrome for 25 years now and believe you me I know what you are going through I sympathize with you and hope you can find a way to have your disability approved.

[Henshaw241241]

Hi I have had RLS for about 15 years back and forward to the doctor's climbing the walls and walking outside at night just fid up with it then the last time the doctor made a appointment to see a neurologist but had to wait 5 months the best thing ever happened I was on pramipexole the dose was only 88 s the neurologist woman told me they was not strong enough but them in the bin she but me on 180 s pramipexole 1 to take at 15 hundred time and 1 at 21 hrs. with 2 codene at 30 mg each I have good night's sleep never been so good hope this helps Tony

[Hidden]

Hi Rlskid !! I received today a mail asking me if I can help since I am taking

Pramipexole for my Rls. Indeed I have been taking Pramipexole ER 0.75 mg

with Lyrica 175mg each night for a few years now and it's really working for me

so far thank God. I take it 3 hours before I go to sleep. If I take it only 1 hour or 2 hours before my sleeping time, it does not work and my restless legs are killing me. It is important that I take it at the same time every day (always 3 hours before going to bed).

I sleep very good and have no problem. But from the replies I read, everyone is different.

For me now it works very well but I suffered a lot with Rls before I found the right fit for me. I don't know how long it will stay this way but for now, no complaint. Sometimes, after I take it and the 3 hours did not pass yet, I have to stay more or less active when I feel that my Rls are acting up. Any question, just ask, will be happy to help like

I was helped on this site. Take care now. Hope you will find the right med to start

enjoying your nights. Hannah44 (ex Alia 22)

[Brica]

Riskid, After years trying most of the meds prescribed for RLS, I finally found a Neurologist who treats RLS. The RLS Foundation online can offer names of Dr.’s near you who treat RLS and that is how I connected with Dr. Risk in Marlboro, MA. Finally have relief. Billerica

[Goldy700]

Hi Rlskid - I see you are in California where medical cannabis is legal. I have had great success with taking doctor prescribed medical cannabsis 2 parts CBD 1 part THC. My doctor starts on a low dose and gradually I increase the dose until I find a dose that works. I found it greatly helped me to sleep and reduced RLS considerably. You might like to give it a go.

[annakalia]

pramipexole not right for everyone ask your doc to change your medication it sends me to a deep sleep and kills my r.l.s for that night but continues to make me feel sleepy thought the following day. I take a very low dose of it 1 tablet per night if required I only use them when my r.l.s flares up.

[Joolsg]

If pramipexole has stopped working you can try another dopamine agonist like Ropinirole (requip) but not if you are suffering Augmentation on pramipexole ( Augmentation is where meds stop working, RLS starts earlier, symptoms increase in severity and move to different body parts).

Pregabalin (Lyrica) or Gabapentin or Horizant( only available in USA) are good alternatives to dopamine agonists ( you’d have to go through supervised withdrawal from pramipexole first).

Opioids like tramadol and OxyContin are also good options at low dose ( you’ll need to find a good RLS doctor in the USA who understands opioids at low dose are very effective).

Lots of alternative options to consider.

[lauraflora]

Here is some info that many should find interesting and hopefully helpful. Whether one chooses to use drugs for RLS/sleep problems or other alternative methods, there is a lot one can do to help avoid very bad RLS by watching what one eats. There are triggers in various foods, particularly glutamate which is excitatory and leads to RLS attacks as well as sleeplessness. Here are some articles that explain what is happening.hopkinsmedicine.org/neurolo... The second article at holistichelp.net How to Increase Gaba and Balance Glutamate explains more about this AND has a list, toward the end, of food additives and, yes, even various foods that have high levels of glutamate. It explains that just cutting down glutamate levels will be helpful, as one needs some glutamate. Even healthy foods can contain glutamate - such as mushrooms, aged cheeses, bone broth. But not all foods bother everyone, so one has to experiment with which ones, and how much or how little one can consume.

And finally, be aware that altho RLS causes sleeplessness, and glutamate causes excitability and therefore sleeplessness, these things might not be the ONLY issue causing sleeplessness. Depending upon the ages of the people reading these posts, please look into this issue. I have found it to be THE MOST CONSISTANTLY HELPFUL for my own several year long time problem with sleep. I have now been sleeping very well - deeply and dreaming for several months. (I am 67.) https:ndnr.com/anxietydepressionmental-health Sleep Issues & Aging: A Case Study Notice that in the first paragraph the author mentions menopause and andropause. Meaning that the sleep issues pertain to men as well as women. The example of her patient is a woman, so I would not say explicitly that her "prescription" is necessarily for men. BUT pregnenolone - the basis of her advice - can be taken by men, as it is produced in the adrenals by both men and women. It declines (as the other hormones) with age. Anyway, when I started taking it, 30 mg before bed, my sleep problems began to disappear. If I wake up at night, I take perhaps 5 or 10 mg, and go back to sleep. It is not a drug for sleep - it is the hormone at the top of the adrenal cascade, which you body can turn into the various downstream hormones it needs. You can read about pregnenolone and also look on Amazon (that paragon of advice and information from other people.) I bought 30 mg capsules from Vitamin Shoppe, open one and pour it in my mouth (hardly any taste.) Then, I bought 5 mg ones on Amazon to use as needed. This and avoiding glutamate has been really helpful. Altho I feel a bit of RLS here and there, in the 4 months that I started taking pregnenolone and have been sleeping well, I have had only 3 nights where my RLS was rather bad- and I could attribute it to too much parmesan cheese one time and too much aged cheese another time, and bone broth the last time. (I guess these are on my avoid list.)(I can eat parmesan cheese in small quantities.)

So - yes, I am a bit cavalier in some of the things that I do. But I am putting out info rather than keeping it to myself. I would say, tho, that pregnenolone is probably not necessarily for younger people. But, avoiding too much glutamate in one's diet can apply to anyone. Men would have to look into advice for sleep problems in andropause, (tho pregnenolone might apply.) I hope you all find this interesting and helpful.