Had to stop the Mirapex.

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

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.
ritomko
Posts: 18
Joined: Thu Aug 26, 2010 5:12 pm

Post by ritomko »

Betty/WV wrote:Ritomoko: Glad you're are going to read that book. I'll checkout that site for books. By all means see a neurologist, and I hope you find one that knows about RLS. I see a neurologist, but he even admitted that he knew little about RLS. He said I knew more about it than he did. Because I have it and research it. He deals with all kinds of neurological diseases. But I think he is at least willing to work with me. I'll give him a chance. :roll:

RLS is just a trial and error thing. Try something if it works, great. If not you go on to something else. Then that may stop working or make your RLS worse, then you try to figure out what to do next. Woe is me. That is why this site is so valuable. Some people on here are so knowledgeable. But you still have to be careful. The soap under the sheet thing. Some people swear by it, but I can't see any possible reason why it would work. I think we have all tried it, but then again, we try anything to see if it works. Also, the compression stockings, help some people. I have been wearing them after the knee replacement and I have adema also. They feel good on my legs but if my RLs is acting up, they don't help.

Ok, I've rambled on enough. Take care all.
Thanks Betty-you've been great. I did see a neurologist on the website that is in my area-Naples, Florida. Guess I will give him a try. I am in Pgh in the summer and see my PCP. Leaving for Naples next week and will be there until May so will make contact . Tried the stockings and did not work once the spasms started....may put them on around 5ish and see if that helps.

BETTY/WV

sugbrendas
Posts: 234
Joined: Thu Aug 05, 2004 7:28 pm
Location: Balto.
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Post by sugbrendas »

ritomko,

for decades I was on 2 mg's of Klonopin, I was not diagnosed but my Dr had tried everything else. It did work.
Then after a flare up I added Niquil,an adult dose. THat worked for gosh 15-20 years.

In 2002 I got Gillium Barre' syndrome. Very weak muscles,hardley functional at all. The pain was horrible too. I asked my Dr for a non-narcotic pain killer. I started on Tramadol then..I had GBS from 2002 to 2004 after with minor muscle weakness and pain still..Felt like hot matches placed all along my arms.

Another flare up I added Deseryl,it worked the 1st time but not this time.
I always try to give one up before starting another.
A couple of antidepressants..not a good thing for me usually.

So my end cocktail was Klonopin,nIquil and Tramadol.
You know they changed the ingredients in Niquil right around the time I flared...

NOW it's 3 mg's Klonopin and 100mgs of Tramadol and usually Tylenol PM,when i'm desperate which is almost always.

I do always think we should see a Neurologist because they can switch you around more and also i've found that Primary's are hesitant to keep prescribing and prescribing. So yes for relief and safety reasons I think you should try to see one that specializes in RLS.

I am so lucky to have Hopkins right up the street and my Dr is a world renowned researcher and publisher. Christopher Early.

It can look like drug seeking behavior without a specialist opinion and diagnosis.

hth,
Brenda
Finally able to sleep on average 9 hours a night!
Brenda

Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Post by Betty/WV »

Brenda: Doesn't Nyquil and Tylenol PM drive your RLS wild? They are on the list that is supposed to make RLS worse, along with Benedryl and others. I know that Benedryl will because they gave it to me once in the hospital and my legs were jumping all over the place like they had a mind of their own.

I guess its like everything else with RLS. Its trial and error, what works for some doesn't for others.

Glad they helped.

BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

sugbrendas
Posts: 234
Joined: Thu Aug 05, 2004 7:28 pm
Location: Balto.
Contact:

Post by sugbrendas »

yes,i've always said it's supposed to. BUT it sometimes has worked for me. I guess like the Parkinson's meds work for some and not me.
I can see the difference-less sleep when I skip the pm's.

All I really care about is sleep and not the studies.

Just like L-dopa, it made me worse yet they've tried several times to push me into it. (my primary)
Then the newsletter from (Dr Early) before last said L-dopa has been known to cause augmentation. Something I knew all along.

One thing I need to mention and most of you already know is that just cause our Drs say we have RLS that doesn't mean something else isn't going on either.
Just like one of my sleep studies showed severe hypoxia during REM.
So now i'm on oxygen at night.
And the way my legs hurt i'm wondering if something vascular is going on too.

So open your mind to other symptoms as there my be more than one daignoses.

Brenda
Finally able to sleep on average 9 hours a night!
Brenda

Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Post by Betty/WV »

Amen, to everything you said Brenda. I don't trust anything or anyone any more. Who knows maybe they just want to sell more Mirapex and Requip. Everything is based on GREED. I'm afraid to try things because of the episode with benedryl. And ice cream does the same thing. When I took the benedryl it was hours of misery :x and I was in the hospital and they just let me suffer, what did they care. They could have given me something to help. :?:

It is just so confusing, you don't know which way to turn. Hey if something works for you, use it. Its just the trying it out the first time that is scary.

BETTY/WV All I care about is sleep also. I get so little of it.
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Post by Betty/WV »

Me again, Brenda: I'm having a sleep study soon to see if something else is going on.

BETTY/WV :? :? :? :?
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

sugbrendas
Posts: 234
Joined: Thu Aug 05, 2004 7:28 pm
Location: Balto.
Contact:

Post by sugbrendas »

Good for you Betty!
just a tip here,
make sure your leg sensors are tight enough.
Finally able to sleep on average 9 hours a night!
Brenda

Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Post by Betty/WV »

Brenda: What are leg sensors, I don't remember. BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

sugbrendas
Posts: 234
Joined: Thu Aug 05, 2004 7:28 pm
Location: Balto.
Contact:

Post by sugbrendas »

The straps they put on your legs to measure movement.
They put mine on turned it on and shortly after I had a jerk and I asked if they caught it and they said no. I noticed the straps were kinda loose.

Brenda
Finally able to sleep on average 9 hours a night!
Brenda

Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Post by Betty/WV »

Ok thanks Brenda.

BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

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