New to investigating my RLS

[rsoular]

I discovered that I might have it when I decided to get off Ambian after ten years of use. I now realize that probably the real reason I started taking Ambian was because of RLS. I have used CBT-i therapy for insomnia but I only get around 2-3 hours following the protocol. Just looking for some help! Thanks!

[Hidden]

Hi an welcome!

Can you tell us what your symptoms are?

[rsoular in reply to Hidden]

For about 20 years I haven't been able to sleep but I didn't know why. I took Benadryl for a few years and then started taking very small amounts (1mg-2.5 mg) of Ambian nightly for the past 10 years. After doing some research on sleep and reading "Why We Sleep" by Matthew Walker I see that Ambian use is really bad, for all kinds of reasons but particularly because I have a family history of dementia. In the last few years I've noticed my legs wanting to move as I try to fall asleep, and just as I fall asleep then twitch and have "pins and needles" feeling, and I wake up. My doctor has allowed me to stay on Ambian because of this. But I really don't want to take Ambian anymore, and I've noticed that it takes me more and more Ambian to fall asleep which is a bad sign. So my excuse for years that I take a tiny amount, isn't really true anymore. I've tried "Calm" magnesium citrate which seemed to work some but gave me bad diarrhea. I've followed the CBT-i protocol for insomnia (no naps, caffeine, get up when can't sleep, sleep restriction etc) but I end up only being able to sleep about 3 hours a night at this point and I've becoming dysfunctional at work. I can't answer questions about data or do any kind of problem solving because my brain doesn't work. So for me it's more about wanting sleep, than nuisance from the RLS (I don't have pain or anything). So my doc has ordered a sleep study and gave me a Neupro patch, but I'm going to try everything else before that. I've ordered CBD oil and Sedorum and Restovin and I will see how all that works. I suppose I should have my ferritin levels checked to see if that's an issue. Any tips would be super helpful.

[Hidden in reply to rsoular]

I’m glad you’re getting a sleep study done; for your situation that seems to be the next best step.

I read (and am re-reading) a book called «The Sleep Solution» by sleep specialist W. Chris Winters. He talks about sleep studies, different sleep meds. and the science behind them, various sleep issues (with a focus on insomnia), etc. I recommend his book for you. I know that you can get it at Barnes and Noble (if in the USA) and on Amazon. If you have a Kindle, you might even be able to download it to that.

Keep me posted if you would like!

[involuntarydancer]

Hi rsoular, and welcome on here.

In terms of suggestions, it would definitely be a good idea to get your serum ferritin checked. There is a strong link between low iron levels and rls. US experts recommend getting serum ferritin up to over 100. Make sure you get the actual figure if you get tested. 'Normal' can mean as low as 20 which is very bad for someone with rls.

Depending on where you live kratom is very effective against rls for most sufferers. It can be ordered by post - unfortunately it is not legal in some places but some suppliers in Amsterdam will post it across Europe.

In terms of prescription drugs, you could look at pregabalin (lyrica) or gabapentin instead of mirapexin if your legs are really bad.

Some people find that taking magnesium helps and also epsom salts in a bath. Gentle stretching when symptoms strike is good and a very diverting activity such as a computer game (online chess is great for me) can banish rls for up to two hours. Dietary changes work really well for lots of people. Anti-inflammatory diets and generally clean eating - avoiding dairy, meat and gluten generally get the thumbs up.

It is hard to tell from your post if you suffer from insomnia as well as rls or if it is solely that your sleep is disturbed by the rls itself (this is the most profound effect of rls and the one that almost all sufferers complain of most - it is why rls is such an incredibly difficult affliction). Either way, I'm pretty sure Ambien is one of those substances that exacerbates rls so you would be right to discontinue it. Benadryl definitely exacerbates rls so don't take that. There are loads of supplements that help sleep. L-theanine, L-tyrosine, taurine, fish oil. Valerian is also quite effective for some.

I hope you find something that affords you relief. Good luck and keep posting. It is always great to hear what other people are doing and how they are faring.