Medications which may help RLS
After 50 years experience with RLS and a husband who snores like a walrus most of the time I would like to share my ways of trying to deal
with this most horrid condition. Now 72 I first experienced RSL during my first pregnancy at 21.
Hubbies snoring and my dreadful legs put us eventually into separate bedrooms, which is sad!!
My first successful break through was when I was menopausal and anaemic and was prescribed iron! For 6 months taking iron I was completely free of RLS.. hallelujah!!!!
Then was advised to come off iron and bang… back comes the RLS. Persuading my dr to allow future iron was not always easy as I understand if your body does not need iron then it can be harmful to your liver or kidneys, however I was allowed several weeks of iron but as there are many different kinds I found it hard to stumble on the right one. I finally came off all iron and suffered once more enormously with nights of no sleep and feeling totally zombie like most days!
10 months ago came my most recent breakthrough, although I don’t like taking it, a drug called Rotigotine which is a dopamine agonist and also used for sufferers of Parkinson’s. It is in a patch form and is wonderful.
If the brain does not produce sufficient dopamine then the legs start! This is also I believe why the iron worked as iron is a cofactor of many enzymes in the brain including Tryptophan and these are responsible for the production of dopamine and lack of this causes RLS! How simple is that?
I can understand all this but I feel not all drs understand the connection.
My heart seriously goes out to fellow sufferers as RLS is the most debilitating condition as every living thing needs its sleep for cells in the body to re generate and repair.
At the moment I have been taking one 1 mg patch per night and to great success, although occasionally I feel something creeping back and 2 mg or even 3 are an acceptable dose to control RLS!
I hope this in formation is of some use to those struggling with RLS!
More research is definitely needed
Good Luck
Dear RLSmakesmecrazy,
Your user name expresses where I am at with my RLS currently. Symptoms are now body-wide (upper and lower extremities, plus trunk) and 24/7. I routinely go 3 or sometimes 4 nights in a row with zero minutes of sleep. A couple of weeks ago I fell asleep at my desk and face-planted directly into the keyboard. My wife and I were bound and determined to see the solar eclipse from Indiana (we live in Minnesota), and I tried to help with the driving 3 times. All 3 times I fell asleep almost as soon as I took the wheel. My wife had to drive all the way to IN and back again.
I've gone from ropinirole first, then to the rotigotine patch, then gabapentin (up to 3,000mg), then Horizant, and then I got a referral to the Mayo Clinic's sleep medicine department. The doctor there put me on oxycodone. Oxycodone worked, but I became chemically dependent on it after about 3 years-- a junkie. So my Mayo doctor took that away and put me on Lyrica (useless and a very high co-pay). A few months later, my sleep doc's colleague prescribed pramipexole when she called in sick and he was handling her appointments, which my main sleep doc refused to let me try, since it's a dopamine agonist just like ropinirole. And pramipexole did help for awhile, though we all know the story of augmentation. I needed more and more of it, and it was less and less effective.
Most recently, my Mayo doctor is having me taper off of pramipexole. I'm down to 0.25mg now. As ineffective as it was, tapering off of it has been hellish. She gave me Tramadol, which is supposed to work something like oxycodone, since it is a synthetic opioid (albeit milder and less prone to addiction and abuse). Tramadol does absolutely nothing. Zip. Nada.
I've tried every OTC product there is, I think; calf stretching, ice, hot packs, you name it. I'm gobbling magnesium like there's no tomorrow, and routinely have my iron/ferritins checked (perfectly normal every time). I even tried my wife's "Bemer" machine (it does something to the body's circulation at the capillary level by way of transdermal magnetic stimulation, and thus improves body function. She for her part is certain this $6,000.00 device is effective; her cousin and her cousin's husband are both benefitting from the machine.; but I don't respond to it.
Have I missed any meds? Any techniques? Magic incantations? I truly do believe RLS is driving me insane. Some nights I go out into the garage, get in the car, close the doors and windows, and just howl and scream. (You thought I was going to say I turn on the car and try to suffocate myself with CO fumes, didn't you? Morally, that option is not open to me; plus my wife needs me. Getting in the car in the garage is just a way to ensure that I don't wake my wife or neighbors.
My older brother has RLS even worse than mine; I don't know how he manages. I pray for all of you in the RLS community, because I'm sure some of you are suffering worse than I am. God bless you all, and may someone come up with something that works, and soon. This is sheer insanity.
Spazzerandtwitcher
My heart really goes out to you,
. I can't imagine living with that level of RLS every day. Has any doctor every tried to investigate the cause of your symptoms or have they only ever treated the symptoms themselves? I am sure you have gotten multiple opinions from multiple doctors, but it might be worthwhile (as frustrating as it can be) to keep trying. Have you seen many neurologists? My niece nearly died from an illness that 30 different specialists couldn't diagnose. Finally, when she was skeletal and in a wheelchair (in her late 20s), her gynecologist of all people, asked whether she had ever been tested for Celiac's disease. Celiac's it was. Two years later, she was 100 percent healthy again. I am not suggesting you have Celiac's. I am only using her situation to illustrate why it is important to keep an open mind and keep advocating for yourself. Had she given up after those 30 specialists, she wouldn't be with us any longer. I truly hope you eventually find effective treatment. Please know we are here for you whenever you need us. Wishing you the very best. - Lori (Team Member)
I have been taking Requip for about a month and 1 mg worked for about 3 wks. So my Dr upped it to two. So far 2 mths and it’s great. Rls has been one of the worst part of living for me and i have 5 autoimmune diseases. It’s the worst symptom by far!!! Mine were so bad I would kick and flail cause the pain was awful!!
I hear you! I'm so glad to hear you've gotten relief from Requip. I hope that it continues to work well so that you can feel more comfortable! If you're comfortable sharing your other autoimmune conditions, we might be able to share links to our sister sites if we have them for your conditions. Or you can just look at the full list at the bottom of each page. 😀 We are all here to support you and wish you the best! -Melissa, rls team
Hi
. It's a shame you couldn't keep taking the iron. I am guessing your doctor worries about the long-term effects, especially if you were taking a large dose Here is an article about iron and RLS that might interest you: https://restlesslegssyndrome.sleep-disorders.net/iron-supplements. Have you considered getting a second opinion or are you happy with your current treatment plan for now. Wishing you the very best. - Lori (Team Member) I take Ropinerole, which is also a dopamine agonist. Recently I was also prescribed iron and Gabapentin. Finally some relief
I am glad you found something that helps,
. I hope it continues to be effective and that you are finally able to get some quality sleep. Warmly, Lori (Team Member)
