New guy

Whether new to RLS/WED or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
curqlink
Posts: 61
Joined: Sat Jul 21, 2018 6:38 am

New guy

Postby curqlink » Sat Jul 21, 2018 5:34 pm

Hi everyone..Been visiting this site off and on for a couple years i guess. All i can say is thank god this place is here. I have gained a wealth of information about this terrible condition that most people (including dr's) just think is a uncomfortable sensation. Like most i started on ropinirole maybe 15 years ago. Over the years it became less and less effective. I have a good doctor and he finally added Tramadol and later Norco for occasional use. I used the Norco to wean myself from 3 mg of ropinirole down to 1mg. But after several years its just not working anymore. Plus my Dr shut off my Norco just awhile back. I had to do some talking to even keep the tramadol script active. He talked me into trying Gabapentin which didnt work out at all. Totally freaked me out ...and that was at the lowest dose availiable. Just last night for the first time in 15 years i didnt take ropinirole. As you can imagine...it was not a pleasant nite. Maybe 2 hours sleep. And that was with throwing everything i had at it. Norco..(i have a small stash) Tramadol..even threw some Kratom at it about 4 in the morning. Thats when i finally got a couple hours of sleep. I really am not sure what im gona take after i have finally reset my recepters. Guess i will see how well Tramadol will do on its own. I know there are a lot of people here with way worse stories to tell than mine. I just wish someone would make a breakthru in this crappy condition that's making so many people miserable.

ViewsAskew
Moderator
Posts: 15302
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: New guy

Postby ViewsAskew » Sun Jul 22, 2018 7:05 pm

A lot of us who were first on a DA find that gabapentin didn't work next. I have no idea it's because it just isn't for everyone or if the DAs cause changes in our brain chemistry that prevent it from doing do.

Stopping was the hardest thing I've done. I know how horrible you are feeling. The only consolation is that it IS temporary. Could be 4, 10, or 15 days at its worst, but it WILL get better.

I am sure you are being careful, but always feel a bit of concern when I think of someone throwing opioids at it (I have been there). So easy to overdose. If you have someone around, some of us have taken out the max we could take and then given the bottle(s) to that person.

I always feel so badly when another person is in this situation and needs this forum. And then I am reminded how wonderful it is to have it for those people.
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.

twitchy
Posts: 2
Joined: Sun Jul 01, 2018 8:09 pm

Re: New guy

Postby twitchy » Sun Jul 22, 2018 9:43 pm

It is wonderful! Just knowing that there are people out there who 'get it' and don't think I'm exaggerating, etc, is so unbelievably comforting, plus the great tips! What has worked best for me (I am trying to get off of ropinerole) is tons of stretching (I especially like any hip openers like the pigeon in yoga) but be sure your muscles are warmed up first. I learned about CBD oil from my neighbor (a pharmacist) and read more about it on the forum. It helps a lot! She told me to be sure it is a full spectrum oil and recommended KOI brand in spearmint flavor. It actually tastes good! Do a google search on Koi naturals cbd and you'll find it. I also found a $20 coupon code and got free shipping. It's still expensive, but much less than the disgusting tasting stuff I bought locally. This is a link to get you $5 off, but if you search that $20 off might still be around.
https://koicbd.com/?redeem=5b44fe9180237e00317cb183


Also, I like the tens system. I bought the icy hot brand for about $30 at walmart. It is a great distraction. It doesn't always work, but sometimes is very helpful--I especially loved it on a long car ride. My other leg was jealous so I bought a cvs brand one that was more expensive (maybe $45) and more complicated. Too much trouble and beeping noises to use in the middle of the night (unless you sleep alone I guess). I also like a new muscle cramp spray, which I bought for about $20 at cvs, It is a magnesium spray and does help, as does good old bengay. I appreciate knowing that sleeping pills (I was using benadryl) are a bad idea and will stop that. Tonight I'm going to try a hot bath with epsom salts and see how that does. And I'm going to look into Kratom which I have never heard of before. Thank you all!

Polar Bear
Moderator
Posts: 7224
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: New guy

Postby Polar Bear » Mon Jul 23, 2018 8:49 am

twitchy - it seems that many people are now trying CBD oil for various problems. It would be useful for those of us who are thinking of using it, if you would tell us how it helps you.

What strength of CBD Oil do you find useful and in what way was it useful i.e. Did it help with your sleep, what about RLS symptoms and the need to move.

You sound very proactive in your battle with RLS, most of us have to be as some of our GP doctors are not all up to speed.
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
Posts: 569
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: New guy

Postby stjohnh » Mon Jul 23, 2018 6:25 pm

curqlink wrote:...I really am not sure what im gona take after i have finally reset my recepters. Guess i will see how well Tramadol will do on its own...


Sounds like you may be a candidate for low doses of multiple meds. Also tramadol has its own set of problems.

After you have been off ropinirole for at least a week, I'd suggest starting a combo like 0.25mg ropinirole+ 300mg gabapentin (even though it it didn't help as a single drug)+ 1g kratom. Take together about 90min before bed time.
Blessings,
Holland

curqlink
Posts: 61
Joined: Sat Jul 21, 2018 6:38 am

Re: New guy

Postby curqlink » Tue Jul 24, 2018 11:06 am

Thanks everyone for the replies. It wasn't so much that the gabapentin didn't work as it was the side effects. I had the smallest dose possible and it just made me feel really weird(more than normal). I got to reading how much most people take to do any good and thought to myself...there's no way i could take that much.

stjohnh
Posts: 569
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: New guy

Postby stjohnh » Tue Jul 24, 2018 2:22 pm

Gabapentin dosing varies more than most drugs from person to person. I'm sensitive, I take 100mg at 7:30 pm and 50 more at 11:30. If I take more I feel like zombie the next day. I would start at 1/2 of the dose you had problems with. What dose did you take?
Blessings,
Holland

curqlink
Posts: 61
Joined: Sat Jul 21, 2018 6:38 am

Re: New guy

Postby curqlink » Tue Jul 24, 2018 2:56 pm

I think it was 100 mg. It was a capsule so i couldn't cut it in half. I suppose i could of dumped part of it out tho. Unfortunately i threw them away. But im sure i can refill it. I may try it again. I thought that was a bad experience at the time. But after 4 nites of practically no sleep..i realize it can be much worse.

curqlink
Posts: 61
Joined: Sat Jul 21, 2018 6:38 am

Re: New guy

Postby curqlink » Wed Jul 25, 2018 2:42 am

I called and got a refill of gabapentin today. I will give it another chance. Kratom is my new best friend. I just wish it lasted longer than 2 or 3 hrs. I'm not good at waking up and going back to sleep. Maybe i will switch back and forth between Kratom and Tramadol. Might help delay any tolerance issues.I wish it was ok to take them in the same night. I would take Kratom early in the eve. Them Tramadol at bedtime. But its not recomended to take them too close together as they are both SSRI's

stjohnh
Posts: 569
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: New guy

Postby stjohnh » Wed Jul 25, 2018 1:39 pm

curqlink wrote:... I would take Kratom early in the eve. Them Tramadol at bedtime. But its not recomended to take them too close together as they are both SSRI's


? I thought SSRI's were antidepressants.
Blessings,
Holland

Polar Bear
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Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: New guy

Postby Polar Bear » Wed Jul 25, 2018 2:40 pm

Yep... SSRIs are antidepressants.
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

curqlink
Posts: 61
Joined: Sat Jul 21, 2018 6:38 am

Re: New guy

Postby curqlink » Wed Jul 25, 2018 2:45 pm

I'm not an expert so it may be BS. But I read that somewhere. I read to not take them together because they both effect serotonin levels and increase the possibility of siezures and because of their effects on serotonin can have antidepressant qualities. Again...i'm not expert so don't quote me on that.

Polar Bear
Moderator
Posts: 7224
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: New guy

Postby Polar Bear » Wed Jul 25, 2018 3:44 pm

curqlink - I have googled Tramadol and there is reference to it having some antidepressant qualities.
And when I googled Kratom I found that 'it is beneficial for people suffering from depression because its alkaloids attach itself to many opioid receptors in the brain.'

We find again that 'every day is a school day', there is always something to be learned.
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

Rustsmith
Moderator
Posts: 3348
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: New guy

Postby Rustsmith » Wed Jul 25, 2018 4:23 pm

Serotonin is a neurotransmitter just like dopamine, glutamate, histamine and adenosine. As we are all learning with the recent adenosine research, all of them tend to be interlinked to some degree. So it isn't too surprising to me that tramadol and kratom may have a minor role in addressing depression for some. But they probably are not strong enough to be as effective as the true SSRI's.
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.

curqlink
Posts: 61
Joined: Sat Jul 21, 2018 6:38 am

Re: New guy

Postby curqlink » Wed Jul 25, 2018 8:36 pm

The article i was reading was on a site called Kratomguides.com where they was talking about Kratom/Tramadol combination.


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