A BIG what if

WED/RLS occurs more frequently in certain populations, including people with end-stage renal disease, women during pregnancy, and people with iron deficiency. Also, RLS/WED in the elderly and children brings other challenges. Sharing your experiences may be extraordinarily helpful to others.
Icantsleep
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A BIG what if

Postby Icantsleep » Thu Sep 26, 2019 12:45 am

What if ......

My RLS was actually secondary, caused by years of antidepressants and anti anxiety meds (and a few street drugs prior to that ) ?

What if I'm now augmenting from 13 years of mirapex that I was put on erroneously, instead of eliminating the true causes of my RLS ?

How important is determining my origin of RLS ?

I have no family history of it, but I do have an elaborate history of prescription and non prescription drug use (none of which have been present for nearly 15 years)

Am I doomed to now have primary RLS merely from my 13 years of mirapex ingestion ?

stjohnh
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Re: A BIG what if

Postby stjohnh » Thu Sep 26, 2019 1:24 am

I'm not sure I really understand your question. Ordinarily RLS from any cause is NOT curable, only treatable. The only real exception is those whose Brain Iron Deficiency (BID) is caused by long term total body iron deficiency (a small minority of people with RLS). All others (well, almost all) have BID due to a combination of genetic (even if you have no known family history of RLS), epigenetic and environmental factors (lower than average iron, old age, other meds, etc).

Pregnancy is the only situation that RLS commonly resolves.

Primary RLS is NOT caused by Mirapex, even 13 years of it. There is some evidence (controversial) that long term DA treatment at high doses can cause permanent dopamine receptor damage. Not enough data to know for sure however.

The treatment of nearly all forms of RLS is the same: Iron, alpha-2 ligands (gabapentin, etc), dopamine agonists, opioids.

Remember also that RLS is a heterogeneous disease, quite variable. I believe the genes discovered linked to RLS are numbering close to 20 now, and most of us will have a combination that is at least somewhat different than anyone else. Also, even though most consider RLS to primarily be a BID disease, there is some evidence that the BID could be caused or symptoms exacerbated by abnormal endogenous opioid receptor dysfunction, perhaps explaining the substantial minority of patients that do not improve with IV Iron.
Blessings,
Holland

Icantsleep
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Re: A BIG what if

Postby Icantsleep » Thu Sep 26, 2019 1:43 am

What I mean is ..... what if my rls was secondary, which presented itself as a side effect of antidepressants etc , but it was treated with mirapex as opposed to eliminating the source of the problem ?

I believe what you're saying is that I may have damaged my receptors , but I would not now have primary RLS as a result of my mirapex use ?

stjohnh
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Re: A BIG what if

Postby stjohnh » Thu Sep 26, 2019 1:58 am

In medicine the word "primary" means a disease without an antecedent cause. So if your RLS was caused by Mirapex, it would be secondary to the Mirapex.

It is possible that your RLS treatment has resulted in damaged receptors, there is currently no way to determine that. Regardless, RLS is a (mostly) progressive disease with symptoms worsening a patient grows older.

As far as I know, the medicines that worsen RLS symptoms, (antihistamines like diphenhydramine, some antidepressants, etc) do not cause RLS, but exacerbate an existing case of RLS.
Blessings,
Holland

Icantsleep
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Re: A BIG what if

Postby Icantsleep » Thu Sep 26, 2019 3:54 am

Makes sense

I not looking to live in the past regarding what I should have done instead of possibly taking the mirapex

I'm trying to use any and all information to move forward through today and tomorrow

I do see my family doctor tomorrow evening
Still waiting on the new neurologist

At this point I will probably entertain the idea of reintroducing the mirapex at .0625mg
Continuing with clonazepam
Continuing with high THC (and likely CBD)

The one variable (which is likely) is a maintained dose of an opiod and/or kratom , the latter I'm a bit concerned with finding a steady source and quality control

sleepdancer2
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Re: A BIG what if

Postby sleepdancer2 » Thu Sep 26, 2019 7:16 am

Interesting question. There's been lots of discussion on here about meds that can either exacerbate RLS or maybe even cause it as a side effect. If you are augmenting on Mirapex, that sounds to me like twice the agony if there are two contributors. Unfortunately the only way to answer those questions would be to carefully wean off suspect meds. I want to emphasize carefully wean because getting off some meds can cause more or even worse issues. From what I've read, especially anti depressants. I went off a higher dose of Mirapex abruptly after several years of use and it caused permanent neurological glitches. Ideally one could find a baseline and make treatment decisions from there. Not everyone has that option. For me the process of getting off of and over Mirapex took months, maybe even years if we count recovery. There was a long period of recovery, and it seemed to me to be a period of the brain healing from years of trauma. When I first went on Mirapex, I did not have RLS symptoms, but did have severe PLMD. By the time I started augmenting I had RLS with a vengeance and my limb movements had turned to wild flailing. Once off the meds and past the post augmentation period I have not been bothered much by RLS and my limb movements gradually tempered to the point they are manageable using a TENS Unit. I tend to think this is my baseline, and what I would have been if I had never chosen to medicate my movements. Still need treatment, but after the hell I went through for years, this misery seems more bearable than I thought when I had nothing to compare it to. I can say my brain is not in such a state of agitation - or tormented - as it once was when I tried to sleep. I can't explain that on a cellular level or in terms of neurons, just know I am better than I was.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

stjohnh
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Re: A BIG what if

Postby stjohnh » Thu Sep 26, 2019 2:35 pm

Icantsleep wrote:
The one variable (which is likely) is a maintained dose of an opiod and/or kratom , the latter I'm a bit concerned with finding a steady source and quality control


This seems to be a minor problem with kratom (assuming it is legal in your state, which it is in most). Obtaining prescription opioids is a variable problem, minor for some, very major for others.

Kratom is the ground leaf of a tree grown in SE Asia. It is not currently an approved supplement by the FDA. This basically means that a user has to depend on the reputation of the vendor, and there are no guarantees. However I have purchased kratom from 5 different vendors over the past 4 years, and all the Red Vein Borneo seems to be about the same strength.

There have been problems with stocking of some kratom vendors, leading to occasional delayed shipping or going out of business. This vendor, while a little more expensive than the lowest price vendors, has been in business continuously for over 5 years, seems to have more commitment to quality than some others, and offers expedited shipping, including next day delivery for those willing to pay the extra shipping charge. This link goes directly to Red Vein Borneo kratom, the most commonly recommended strain on this forum.
https://www.phytoextractum.com/buy-red-vein-borneo-kratom-powder-online
Blessings,
Holland

Icantsleep
Posts: 145
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Location: Ottawa Canada

Re: A BIG what if

Postby Icantsleep » Thu Sep 26, 2019 3:08 pm

stjohnh wrote:
Icantsleep wrote:
The one variable (which is likely) is a maintained dose of an opiod and/or kratom , the latter I'm a bit concerned with finding a steady source and quality control


This seems to be a minor problem with kratom (assuming it is legal in your state, which it is in most). Obtaining prescription opioids is a variable problem, minor for some, very major for others.

Kratom is the ground leaf of a tree grown in SE Asia. It is not currently an approved supplement by the FDA. This basically means that a user has to depend on the reputation of the vendor, and there are no guarantees. However I have purchased kratom from 5 different vendors over the past 4 years, and all the Red Vein Borneo seems to be about the same strength.

There have been problems with stocking of some kratom vendors, leading to occasional delayed shipping or going out of business. This vendor, while a little more expensive than the lowest price vendors, has been in business continuously for over 5 years, seems to have more commitment to quality than some others, and offers expedited shipping, including next day delivery for those willing to pay the extra shipping charge. This link goes directly to Red Vein Borneo kratom, the most commonly recommended strain on this forum.
https://www.phytoextractum.com/buy-red-vein-borneo-kratom-powder-online



Not sure if they'd let this across the border
(I'm in Canada )
I looks like they ship here but Canadian border agents might stop it from entering the country

I guess I could try .....

stjohnh
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Re: A BIG what if

Postby stjohnh » Thu Sep 26, 2019 3:59 pm

Icantsleep wrote:...


Not sure if they'd let this across the border
(I'm in Canada )
I looks like they ship here but Canadian border agents might stop it from entering the country

I guess I could try .....

We have several Canadians that post here, at least one uses kratom. Maybe they will chime in on Canadian vendors. One thing I know for sure, do not buy from a "smoke shop," Gas station or convenience store. Only from a reputable online source.
Blessings,
Holland

Polar Bear
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Re: A BIG what if

Postby Polar Bear » Thu Sep 26, 2019 9:57 pm

Icantsleep wrote:...


Not sure if they'd let this across the border
(I'm in Canada )
I looks like they ship here but Canadian border agents might stop it from entering the country

I guess I could try .....



Kratom is not legal where I live and so for a long time did not consider it. Also, to be honest I was a little wary of a drug that might give a high. I grew up through the 60s but the only high I ever had came from a double vodka.

So, I went for it. Ordered Kratom on line from a recommended provider. It was unremarkable in its arrival.

I have decided that even should it become an (unlikely) official issue I am of a certain age, not a hardened criminal, and will stand up and say this is what RLS has driven me to. Do your worst !!

Of course, I am retired and don't have to undergo employment drug checks. Nor shall I ever have to provide a CV seeking employment.
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

ViewsAskew
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Re: A BIG what if

Postby ViewsAskew » Thu Sep 26, 2019 10:01 pm

Polar Bear wrote:
Icantsleep wrote:...


Not sure if they'd let this across the border
(I'm in Canada )
I looks like they ship here but Canadian border agents might stop it from entering the country

I guess I could try .....



Kratom is not legal where I live and so for a long time did not consider it. Also, to be honest I was a little wary of a drug that might give a high. I grew up through the 60s but the only high I ever had came from a double vodka.

So, I went for it. Ordered Kratom on line from a recommended provider. It was unremarkable in its arrival.

I have decided that even should it become an (unlikely) official issue I am of a certain age, not a hardened criminal, and will stand up and say this is what RLS has driven me to. Do your worst !!

Of course, I am retired and don't have to undergo employment drug checks. Nor shall I ever have to provide a CV seeking employment.


:mrgreen: :mrgreen: :mrgreen:
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.

stjohnh
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Re: A BIG what if

Postby stjohnh » Thu Sep 26, 2019 10:41 pm

Here is a list of a few Canadian kratom vendors. I have no experience with any of them. Got the list from a google search.

https://bestkratomcanada.ca/where-to-buy-kratom-online-reviews-guide/
Blessings,
Holland

badnights
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Re: A BIG what if

Postby badnights » Wed Oct 02, 2019 4:55 am

I ordered from an American supplier and it was shipped to Canada without any issues. It's not (yet haha) illegal here.
Beth - Wishing you a restful sleep tonight
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Icantsleep
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Location: Ottawa Canada

Re: A BIG what if

Postby Icantsleep » Fri Oct 04, 2019 2:40 am

stjohnh wrote:Here is a list of a few Canadian kratom vendors. I have no experience with any of them. Got the list from a google search.

https://bestkratomcanada.ca/where-to-buy-kratom-online-reviews-guide/



https://www.canadakratomstore.com/produ ... k-5-x-1oz/

What 5 strains would you get or suggest ?

stjohnh
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Re: A BIG what if

Postby stjohnh » Fri Oct 04, 2019 2:50 pm

Icantsleep wrote:...

What 5 strains would you get or suggest ?


When I first started using kratom, I tried several strains, didn't find much difference between them, so have stuck with Red Vein Borneo for the last few years, just because it seems to be most recommended strain among forum members.
Blessings,
Holland


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