Possible cure?

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.
steve7
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Joined: Tue May 02, 2017 5:16 pm

Possible cure?

Postby steve7 » Wed May 24, 2017 6:53 pm

Folks, I hope you are all well. I wanted to post about my experience here and hope it will help others. At the least, I'm curious if anyone else has experienced this. About maybe 3 months ago I was diagnosed with RLS. I had severe insomnia, so bad there were numerous nights I did not sleep at all. My doctor prescribed pramiprexole, which had no affect at all. He increased dosage, again, no affect. I also had trazadone for insomnia which did help sometimes but not consistently. The RLS worsened to the point I could feel it during the day. I never had any "pain" that I've seen a lot of folks describe. But just that feeling that you have to move, you cannot sit still, that "tingling" in your legs, and I started to feel that during the day also. Anyway, my doctor then prescribed gabapentin, 300mg. Again after taking it a week, 2 weeks...no affect.

I then decided to try some natural things on my own. I found something called spirulina. I'm posting a link to it here only to show you exactly what I have:

https://www.amazon.com/gp/product/B00NL ... UTF8&psc=1

I also began to take medical marijuana with a vaporizer. It has now been probably 2 weeks since I have felt any symptoms at all. When I say that, I mean it actually feels like it's completely gone! I take the marijuana only at night, immediately before bed. But I dont do it every night. There have been nights when I did not take it, and still I did not feel any RLS symptoms. Prior to this, the symptoms were consistent and would come on really bad every night around 9pm, 9:30. I'd be sitting in my recliner and knew it was coming on, and could not sit still. So, at this point I can only conclude that spirulina along with the marijuana has rid me of the symptoms. I don't know if this is an actual "cure" as I didn't think RLS goes away once you have it. But, I did want to share this info and hope that it may work for all of you.

ViewsAskew
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Location: Chicago

Re: Possible cure?

Postby ViewsAskew » Wed May 24, 2017 7:07 pm

Thanks for sharing steve7.

I believe - someone correct me if I am wrong - that spirulina has b12 and iron in it. Many of us are iron deficient. For some reason, a subset of us find that taking substances with iron in them helps prevent RLS symptoms. Marijuana is used by a LOT of us on the forum; glad you found that it helps.

I do find it curious that pramipexole didn't help at all. Some doctors have posited that pramipexole could be used as a test to make sure the symptoms really are RLS - if a person did not respond to it, it wouldn't be RLS. I am not sure this is true; we have had a person now and then say that it didn't help. And your symptoms sound like RLS! We have often thought there are multiple forms of RLS that are as yet unidentified - doctors lump them all together, yet they seem to respond differently.

Did your RLS worsen about the time your doctor increased the pramipexole? If so, that would have been augmentation - a fascinating idea that the drug could cause augmentation without helping. Hmmmm.

At any rate, the most important thing - to me - is to get your serum ferritin and your hemoglobin tested and ask for the actual values.

Oh - and there is no cure, but some people experience long periods of remission. Hopefully you will, too.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

steve7
Posts: 4
Joined: Tue May 02, 2017 5:16 pm

Re: Possible cure?

Postby steve7 » Wed May 24, 2017 7:39 pm

Thanks for the reply. My symptoms did not worsen when prammipexole was increased. I have had ferritin levels and hemoglobin tested and both are within normal levels.

Rustsmith
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Location: Pueblo, Colorado

Re: Possible cure?

Postby Rustsmith » Wed May 24, 2017 10:30 pm

Steve, did you find out what your ferritin level was with an actual number? "Normal" ferritin levels for those who do not have RLS can be as low as 20. But for those of us with RLS the number needs to be at least 75 or better yet, over 100. Frequently our doctors tell us that ferritin and hemoglobin levels are normal, which means normal for the general population - but that is still too low for those of us with RLS.

And yes, many of us have found that marijuana can be very helpful, especially the strains that are higher in THC since these help promote relaxation and sleep.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

steve7
Posts: 4
Joined: Tue May 02, 2017 5:16 pm

Re: Possible cure?

Postby steve7 » Thu May 25, 2017 12:20 am

Last test result 1 month ago was 42. "Normal" I guess is 30-400, seems like quite a range. I am taking iron supplements. My previous level, probably 6 months ago was 28. So...you're suggesting I continue to try to boost that number, even though it is now considered within the normal range huh?

Rustsmith
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Re: Possible cure?

Postby Rustsmith » Thu May 25, 2017 2:44 am

Yes, the normal range of 30-400 is for those who do not have RLS. The recommendation for us is that it be at least 75 and better yet more than 100, especially if you are also taking a dopamine agonist such as pramipexole (Mirapex) or ropinirole (Requip). Ferritin levels below 75 to 100 enhance the probability or speed up the chances of experiencing augmentation.

In my case, I still take daily iron sulfate along with vitamin C and my ferritin levels usually range from 260 to 350. I should also add that I am part of the group of RLS patients who do not get any relief from higher ferritin levels. I take the iron just to make sure that low ferritin doesn't make my severe RLS even worse.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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Posts: 14651
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Possible cure?

Postby ViewsAskew » Fri May 26, 2017 12:13 am

What he said! I need mine around 200 to have any improvement. We are all different, based on the limited research, and most of us see improvement when it is at least 50 to 100.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Location: Northwest Territories, Canada

Re: Possible cure?

Postby badnights » Sat May 27, 2017 10:11 am

steve7. you'll probably find that if you stop taking iron (and spirulina) your ferritin will drop again. People without WED/RLS would be fine -
their ferritin would stay at 42ish after being raised up from 28. But many of us can't stop the iron without ferritin dropping and symptoms returning or getting worse.

Case in point - I just went thru 10 days of worsened symptoms, so bad 2 nights ago that I got 10 minutes of sleep. I was wondering why, and it dawned on me today, a few hours after I proudly told my doctor that I was now taking iron only every second day instead of daily. Every time I drop my iron, and this is probably the fifth time over the years, my symptoms get worse after 2-3 weeks; and when I increase iron intake again, there's a 2 week or so lag then my symptoms improve again. I told my doctor I had dropped the iron about 2-3 weeks ago, but - after mentally reviewing my appointment, in which I had also told her my symptoms had been bad for the last 10 days - I went back to my records and checked the date that I had reduced my iron and it was FIVE weeks ago. D-uh!! Three weeks later, my symptoms got worse.

It's fantastic that all you need is iron. There's a good chance it will last. If you do stop taking iron, and your symptoms return, try to get another ferritin check before you start iron again. Just to see if it dropped.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice


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