Restless Legs Syndrome (RLS) Discussion Board

Polar Bear wrote:l
Oh my, your experience is showing dipyridamole to be worth considering in more ways than one.

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Betty, my experience with dipyridamole was similar to leg's. Didn't help with urge to move. Helped some with sleep, but main effect for me was feeling "more normal" in the day time. It is hard for me to describe exactly what this is, but it was a big effect, and I will readily go back to it if for some reason I can't get my next IV Iron infusion in a timely fashion.

I'm not sure what the creepy crawlies are, so I think that is not part of my RLS symptom cluster.

The initial small trial group that was reported to have a beneficial effect with dipyridamole on both urge to move and sleep was done on untreated patients with mild RLS. Clearly doesn't help in the same way for us with severe RLS.

but main effect for me was feeling "more normal" in the day time.

I don't know any more what is normal, am I normal or not? It is bound to be that my normal is not what should be my (non RLS) normal.
Too many things to think of and remember in order to get through the day/night with a semblence of 'normality'.
Maybe I 'act' normal in as far as possible.

Dipyridamole sounds interesting however I doubt that my GP would have the vision to prescribe it off label.

Polar Bear wrote:I don't know any more what is normal, am I normal or not? It is bound to be that my normal is not what should be my (non RLS) normal.
Too many things to think of and remember in order to get through the day/night with a semblence of 'normality'.
Maybe I 'act' normal in as far as possible.

Dipyridamole sounds interesting however I doubt that my GP would have the vision to prescribe it off label.

Well, I was surprised to feel more normal with the dipyridamole, I really didn't realize how "not normal" I felt before the dipyridamole. I guess the not normal feelings crept into how I felt slowly over years, so I didn't realize that my "not normal" feelings were more than just chronic tiredness from poor sleep.

You are correct that your GP may not prescribe it, but it takes just a few seconds to ask, and you might be surprised. In case you want to try, here is a link to the abstract (the full paper is behind a paywall-ugh). https://www.sciencedirect.com/science/a ... 5718300492. Eleven of 13 patients had significant improvement, 6 had complete resolution of symptoms. Most responded to 200 or 300 mg of dipyridamole per day.

I will retain this document, it would be useful to show my GO.

Well, I was surprised to feel more normal with the dipyridamole, I really didn't realize how "not normal" I felt before the dipyridamole. I guess the not normal feelings crept into how I felt slowly over years, so I didn't realize that my "not normal" feelings were more than just chronic tiredness from poor sleep.

That was exactly my experience.

I have a question for people. As I mentioned before, I applied for an appointment with Dr. Earley (or Allen haha) or someone else who is part of the RLS Quality Care Center at Johns Hopkins. Today they gave me an appointment with a Dr. Sara Benjamin. I have looked her up - I am not much interested in her general ratings (which are OK, not stellar) nor in reviews that don't have to do with WED/RLS, but so far that's all I've found. She has not published anything that I can find on Pubmed (maybe this is not surprising for a clinical practitioner). I can't even tell if she's associated with Earley's team or affiliated with the RLS QCC. She's a neurologist, specialties differ depending what site, RLS is not always listed.

So how do I find out how knowledgeable she is about iron infusions for WED/RLS?

The travel alone will cost me 1500 maybe more depending what airfare I can get. I don't know what the appt costs, but no way will my insurance cover any of it. So I want to be sure I'm going to be talking with someone who knows a LOT about treating WED/RLS with IV iron. I want to be sure I'm going to gain something, be it infusions or useful knowledge about my condition.

What should I do? How can I find out more about her? I thought of just emailing Dr Allen - - I had his email at one point, I think, but I don't seem to have it anymore.

Beth, honestly i'd keep trying for one of the names in which you have confidence.
Perhaps Dr Benjamin is worth seeing but you would like reassurance of this. Would an email to Dr B be worthwhile to ask him if he knows of her.
Or actually, would it cost much more to do a return flight down to Dr B and see him. Using unsocial flights. Haven't you met him?

Such a cost for travelling, you'd be wanting to be sure you're seeing the best that you can.