Wahls diet for WED? Trying it.

Here you can share your experiences with substances that are ingested, inhaled, or otherwise consumed for the purpose of relieving RLS/WED, other than prescription medications. For example, herbal remedies, nutritional supplements, diet, kratom, and marijuana (for now) should be discussed here. Tell others of successes, failures, side effects, and any known research on these substances. [Posts on these subjects created prior to 2009 are in the Physical Treatments forum.]

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
stjohnh
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Re: Wahls diet for WED? Trying it.

Postby stjohnh » Fri Jun 14, 2019 11:48 pm

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

'
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.
Blessings,
Holland

Polar Bear
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Re: Wahls diet for WED? Trying it.

Postby Polar Bear » Sat Jun 15, 2019 6:52 pm

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.
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

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

Re: Wahls diet for WED? Trying it.

Postby stjohnh » Sat Jun 15, 2019 7:17 pm

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/article/abs/pii/S1389945718300492. Eleven of 13 patients had significant improvement, 6 had complete resolution of symptoms. Most responded to 200 or 300 mg of dipyridamole per day.
Blessings,
Holland

Polar Bear
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Re: Wahls diet for WED? Trying it.

Postby Polar Bear » Sat Jun 15, 2019 11:36 pm

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

legsbestill
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Location: Dublin Ireland

Re: Wahls diet for WED? Trying it.

Postby legsbestill » Tue Jun 18, 2019 9:40 pm

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.

badnights
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Appointment at Johns Hopkins

Postby badnights » Sat Jun 22, 2019 5:11 am

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 - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Polar Bear
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Re: Wahls diet for WED? Trying it.

Postby Polar Bear » Sat Jun 22, 2019 6:28 pm

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.
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


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