Hello from Kentucky

Whether new to RLS/WED or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
SleepyJudy
Posts: 4
Joined: Fri Jun 08, 2018 4:23 pm

Hello from Kentucky

Postby SleepyJudy » Fri Jun 08, 2018 11:49 pm

Hi. I just joined today, although I've been "creeping" and reading posts for a couple of weeks. I've had RLS going back to my 20s, although then it was just an every once in a while thing. For the last 10 years (just guessing, not sure), it's been an every night, sometimes day, thing. I'm afraid of trying the prescription meds, afraid of augmentation and other side effects. Also, my mom had Parkinson's and was on some of these same meds and that has made me kind of scared of them. I'm taking quite a few supplements right now. I drink Natural Calm magnesium with calcium every night, take L-Theanine and have recently started GABA and L-Carnitine. Oh, and Slow Fe. I think it's too early to know if those help. The magnesium helped a lot when I first started taking it (started out with Slow Mag before that stopped working and heard about Natural Calm). Oddly, the only time I've been completely without symptoms was for the first 3 months I was taking Prozac. So strange, since everything I've read says anti-depressants exacerbate RLS. But then it came back, and since the Prozac wasn't helping with depression, I went off it. I would have gladly stayed on it forever if it had continued to help me. For reference, I considered last night a pretty good night - I was up 3 or 4 times, but I was able to stand on the affected leg (it only hits me one leg at a time, usually) and try to balance with a slightly bent knee for about a minute, and get back into bed. That didn't work once last night, so I also held a toe touch for 30-40 seconds and then was able to sleep again. But that was a good night by recent standards.

I have a question about Kratom. I'm a little leery of it, since I've read about it being addictive. I'm wondering if it's something that is effective even if only taken once a week, when I'm really desperate to get a decent night's sleep. Does it have to build up in your system and be taken regularly to work, or does each dose work on its own? I have the same question about the prescription meds like Requip - do those have to be taken daily to have an effect or can they be used sporadically, whenever I get to my limit on no sleep?

Thanks for any input/suggestions anyone can give me. I'm so glad to have this community to turn to. There seem to be some very knowledgeable people on here!

stjohnh
Posts: 569
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Hello from Kentucky

Postby stjohnh » Sat Jun 09, 2018 12:12 am

Hi SleepyJudy, welcome !!!

It sounds like you have relatively mild RLS. This means that you may be a good candidate for gabapentin or its relatives, Lyrica or Horizant. They don't cause augmentation. Be sure to get your ferritin checked if you haven't already.

The dopamine agonists are indeed used to treat Parkinson's disease, but at much higher doses than for treatment of RLS.

Kratom works well and doesn't require any build up. No problem with using it once a week.

Requip and the other dopamine agonists also work fairly well when taken episodically. However, they don't lend themselves quite as well to episodic use because some people need to increase the dose gradually, not because of a need to build up the concentration, but because they have side effect problems (headache or nausea).
Blessings,
Holland

SleepyJudy
Posts: 4
Joined: Fri Jun 08, 2018 4:23 pm

Re: Hello from Kentucky

Postby SleepyJudy » Sat Jun 09, 2018 12:24 am

Thanks! I will definitely order some Kratom to see if it helps. I have a 5 hour plane ride coming up in a month, and I'm hoping to find something that will get me through that. I have a check-up at the doctor soon, so I will ask about checking my ferritin levels. Thanks again.

sleepdancer2
Posts: 188
Joined: Sun Jun 29, 2014 7:46 am

Re: Hello from Kentucky

Postby sleepdancer2 » Sat Jun 09, 2018 9:23 am

You might want to give using a TENS Unit a try. Some don't find it helpful. I do. Enough that I've been able to be off meds for about 7 years now. If you decide to try it, I would suggest getting just a cheap one to try it out as it will do as much as the high end ones with all the bells and whistles. I use it in the same manner as prescribed for low back pain, for at least a half hour before bed. And before travel. Once on a tormenting train ride I kept it on the whole time using it intermittently, but I wouldn't recommend that on a plane though as an electronic device might freak people out. Good luck with things.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

Polar Bear
Moderator
Posts: 7224
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Hello from Kentucky

Postby Polar Bear » Sat Jun 09, 2018 7:44 pm

SleepyJudy - take note that when you are given your Ferritin result, please ask for the numbers. This is because it is generally accepted that a level of around 20 is OK. However, for those of us with RLS (Especially if using a DA such as Ropinerole) we want and neee the level to be up around 100.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

SleepyJudy
Posts: 4
Joined: Fri Jun 08, 2018 4:23 pm

Re: Hello from Kentucky

Postby SleepyJudy » Sat Jun 09, 2018 9:33 pm

Thanks for the TENS Unit recommendation, sleepdancer2. My RLS is usually in my quads (although sometimes my arms at the same time), kind of the lower part near my knee, at least that's where it helps to use a massage ball or the heel of my hand when they're bothering me. Would I put the pads directly on my quads, or elsewhere? I've read a bit on these boards that people don't put them on the exact area, so I'm unsure.

Polar Bear, thanks for the advice about my ferritin result. I'm not taking any prescription meds, so I'm guessing it should be quite a bit higher than 20, but not as high as 100?

sleepdancer2
Posts: 188
Joined: Sun Jun 29, 2014 7:46 am

Re: Hello from Kentucky

Postby sleepdancer2 » Thu Jun 14, 2018 8:43 am

I put the electrodes on my lower back (buttocks) as prescribed for low back pain. The sensations seem to interrupt some of the signals as they pass through that area. I've don't have a lot of experience with putting the electrodes on the affected areas, but putting the patches on my legs and feet put my legs in such a state of torment. I did experiment some when I first tried TENS with all areas of my feet and legs, but I don't know that my difficulties mean much as I was in the throes of augmentation and weaning off a dopamine agonist. By the time I figured out the buttocks placement was best, some of my augmentation/weaning furor was subsiding. BTW, Kentucky is a beautiful part of the country. Born in Ohio myself, SW corner. So, howdy neighbor. :)
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

SleepyJudy
Posts: 4
Joined: Fri Jun 08, 2018 4:23 pm

Re: Hello from Kentucky

Postby SleepyJudy » Thu Jun 14, 2018 8:49 pm

Sleepdancer2 - it's always nice to meet a neighbor! I live in far western KY, though, so not too close to OH. I've read so many posts on here, but am I remembering correctly that you are on the west coast now? My son lives in Seattle, and I love it out there. That's my upcoming 5 hour plane ride. I'm on my way to the drugstore now to look for a TENS unit after looking them up online. Fingers crossed! I tried to order kratom from a couple of sites, but they didn't take credit cards. Strange.

sleepdancer2
Posts: 188
Joined: Sun Jun 29, 2014 7:46 am

Re: Hello from Kentucky

Postby sleepdancer2 » Sat Jun 16, 2018 9:02 am

I hear Seattle is a beautiful place. I'm in southern California. About the TENS, most pharmacies sell them and I've seen some gadgets where the pads snap on I think. Maybe not the most economical version, but may be worth it for a trial and a trip. It seemed to me the effect is accumulative, so getting some consistent time in before your trip might be a good idea.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c


Return to “Just Joined?”

Who is online

Users browsing this forum: No registered users and 1 guest