Restless Legs Syndrome (RLS) Discussion Board

What if I don't get to see Earley or anyone close to him? What if they look at my records and won't give me infusions? What if I can't afford the travel and infusions? Haha enough with the whatifs.

I am so tired lately, I have to do something. The symptoms have been getting worse again all winter, and after my miraculous flip to a normal circadian cycle two years ago, I have slipped out of sync again, so that now I can't even get to work consistently by 11 AM. I am being reduced to 6 hours/day, but I don't know if I can even manage that, it's completely wearing me out. I think I need to quit right now, but I would have no income until retirement age in 2.5 yrs, unless I broke into my savings. So I have to do something !

I think I'm going to die unexpectedly one of these days, just drop dead, only I'm kind of expecting it. 'I will wear out and die. I have pushed myself thru exhaustion to get things done for 12 yrs now. It was the only way to get anything done, because I'm always tired. But the scary part is that I no longer know when I'm pushing too hard. So I will just push myself into the grave, I suspect. Unless I can somehow get some sleep.

Iron infusions, dipyridamole, and some kind of retirement. I can figure this out.

Maybe I should look at the title of this topic and go back to strict Wahls diet, too.

Going Keto only helped me for about four months in 2014 I think. It seems like it has helped you longer. But I took no medications during that time. The only thing I can say that might help a little is to fast. Drink water only for a day. This has helped me during some of my worst times. But unfortunately it is not a long term solution and it is hard to do. They used to do this for epilepsy before they invented anti-epileptic drugs.

Good luck,

Steve

I was only actually ketogenic for about 3 months, and I couldn't sustain it because my gym workouts exhausted me. So I don't follow a keto diet, just a vaguely carb-reduced one.

I tried the one-day fast once. It was indeed hard. But you're right - - I should do it once every two months or something. I would have to pick a day I'm not going to the gym - - or would I? Maybe it wouldn't matter...it's not like I'm an Olympic athlete

PS Steve are you still doing without meds a couple of times a week?

No. After I stopped the sublingual buprenorphine, the pain specialist put me on codeine without Tylenol. It was too low of a dose to do much good. I then started alprazolam with the codiene, which helped my jerking. But I still felt tired during the day. After a period of time, I just couldn't go without the medication any more and only do the power plate. I think I was able to do that when I was taking buprenorphine because the amount of buprenorphine sublingual was too high and it has a long half life. I also think that my condition has gotten worse somehow. I am still holding out hope for the buprenorphine film. I have to get off of the alprazolam first. It makes me not able to think clearly. And getting off of it is harder because it actually did help my restless legs. By the way you mentioned the Dipyridamole. I think you have gone through augmentation. I tried it during the time I was taking the codeine and I have also gone through augmentation. At first It didn't seem to help, except maybe my calves. So I tried it at a lower dose of about 50 or 75 mg and it made me worse. There were two nights where I was not able to sleep day or night and many others where I only got 2 or 3 hours of sleep. I think Holland has not gone through augmentation and that may have been why it worked for him. Anyways, based on my experience, I would suggest you avoid that drug.

Steve

whoa. I remember you mentioned that before - about the dipyridamole making your WED worse. I didn't think it through at the time but I should try to puzzle it out why that might be. I have augmented.

Perhaps you are getting worse, as you say, but that doesn't mean it's irrevocable. I know my condition has gone up and down. I was really bad and getting worse, then I got better for a few years after switching my diet, and now for the last year I've been getting worse again. I imagine I will get better again, and I think the route to that is to lower the stress in my life.

Easy peasy. ( )

I wish you luck with the alprazolam. It's going to be difficult for you to reduce or eliminate it, not just because it's a benzo but because it's been helping your symptoms, and you have nothing but codeine to replace it with. Or will you wait until you can get the buprenorphine film?

I have the buprenorphine film. No more codeine either.

Steve

Thanks for the good wishes. Even though the film worked pretty good when I was still taking a higher dose of the alprazolam, things are not that great presently. I am trying not to go up too fast on the belbuca, because I want the effects of the alprazolam to wear off first, so I don't end up taking a higher dose of the belbuca than necessary.

Steve

Makes sense. Hope it goes well.

I tried dipyridamole. I have augmented and withdrew from a high dose of pramipexole about two years prior to commencing dipyridamole. I didn’t notice dipyridamole causing any worsening of my symptoms but Holland did report a temporary worsening about 30 minutes after taking the dipyridamole. From memory Holland found that it gradually abated over the ensuing hour or so.

For me, dipyridamole did not have a hugely beneficial impact on rls symptoms. The urge to move was wholly unaffected but the creepy crawlye feelings disappeared completely. The most significant benefit was that I felt better during the daytime - more ‘myself’ - and this has persisted even after discontinuing dipyridamole.

Holland did report a temporary worsening about 30 minutes after taking the dipyridamole

Thanks legs! I had forgotten that already. He also added a tiny bit of a dopamine agonist iirc to mitigate that effect - I dont remember exactly

Yes, with his encouragement, I too added back in a tiny dose of pramipexole. I now only require the pramipexole to manage my rls - as I say, I discontinued the dipyridamole a while ago. I take breaks from the pramipexole from time to time in hope of deferring augmentation. I use Kratom when on a break. It’s not nearly as effective for me as pramipexole but nonetheless a life saver - fewer side effects, more effective and easier to withdraw from for me than opioids.

I am currently on a pramipexole break and am noticing one major lasting benefit of the time on dipyridamole - I still (6 months or more after discontinuing) don’t get the creepy crawley feeling that was originally banished by dipyridamole. For that alone I am really pleased I spent time on dipyridamole.

am noticing one major lasting benefit of the time on dipyridamole - I still (6 months or more after discontinuing) don’t get the creepy crawley feeling that was originally banished by dipyridamole. For that alone I am really pleased I spent time on dipyridamole.

legsbe, are you saying your WED/RLS symptoms used to be creepy-crawly plus urge-to-move, and now ever since the dipyridamole, they're only urge-to-move? If I'm hearing you correctly - that's amazing!

Yes; that’s it exactly and it is amazing. I’ve almost forgotten what the creepy crawleys feel like. Rls is a LOT more bearable but (never one to by-pass an opportunity to moan) does still keep me awake all night if I don’t treat it - and sometimes even when I do.

legs - thank you for confirming you are still without the creepy crawleys. I was reading this and wondering if I was reading it properly.

The most significant benefit was that I felt better during the daytime - more ‘myself’ - and this has persisted even after discontinuing dipyridamole.

Oh my, your experience is showing dipyridamole to be worth considering in more ways than one.