Another Update (Dipyridamole)

[WideBody]

Good Morning,

Just a quick update. I am now on an as needed basis for Dipyridamole.

Recently my wife and I went on a road trip for our anniversary to a Hot Springs. It was a 2 hour drive to get there and we drove around the mountains for a few hours as well.

I am sure the last sentence triggered a few people. I used to like car rides and we have driven across the US several times with our children. We once drove from Oregon to Florida to watch a Space Shuttle launch. However RLS put an end to that. I really don't like car rides especially if I am driving.

This time was different, at 7:30am about 30 minutes before we left I took 225mg of Dipyridamole. Wow, the difference was amazing. How do I know this is not a placebo? I have PLMA (Periodic Limb Movement while Awake). PLMA only expresses itself when RLS kicks in. I cannot control my PLMA it is involuntary. I get anxiety, everything fells buzzy and I am irritable. I am not sure how to express how RLS feels.

225mg of Dipy and I felt like a whole new person. No stress, no jumping, just relaxed. It was so different it was hard not to think about it. My wife even commented on it!

There is hope!

I hope I am not annoying people. This is all new to me and I am trying to figure it out in real time.

[Kakally]

That is truly amazing and I am so happy for you… long may it continue. So great to have an ‘as and when’ successful medicine up your sleeve. It allows you to feel more relaxed every day… 👍👏🤗

[SueJohnson]

That's great and you know it works when you need it.

[LotteM]

So happy for you!

As most neds are tested when taken on a daily basis, the get prescribed that way. But clearly it is worth trying whether a meds works on an aa-needed basis. Especially when absorption of the medicine is quick, and thus there is no need for repeated doses to getand maintain a good level in theblood or body. Also, when symptoms are intermittent, an medicine that can be taken as needed is preferred of course. The fewer leds tye better.

Keep it up and enjoy!

PS. My doctor didn't want me to try dipyridamole due to the risk of internal bleeds. So I am hoping for a new med that more directly mediates the adenosine pathway. An RLS-specific med, wouldn't that be wonderful?

[WideBody in reply to LotteM]

I think it is great that some researchers are looking at the brains of RLS patients and not just the movements. Dipyridamole is an ENT1/ENT2 blocker. I believe the goal is just an ENT2 blocker. Don't quote me no that, I haven't read up on it in awhile.

[Joolsg]

Wonderful news WideBody. I'm so delighted for you.

[Madlegs1]

Great news. Thanks so much for updating us.

May it keep working for you.👍💚

[researcherxx]

That's great! I'm curious if it doesn't cause you to feel more sleepy while driving?

[WideBody in reply to researcherxx]

Dipyridamole doesn'take me drowsy at all. The worst side effect is a minor headache.

[researcherxx in reply to WideBody]

thank you for replying. I made an assumption that the effect would be similar to having accumulated more adenosine and therefore feeling sleepy.