New and going nuts

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debbluebird
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Joined: Mon May 21, 2012 3:27 pm

Re: New and going nuts

Postby debbluebird » Wed Dec 02, 2015 5:22 am

When I take Gabapentin, at first I sleep a lot and find I have to take it earlier than I think I would. Then it adjusts, and I'm not as sleepy for so long. It works well. I don't take it all the time, only when my RLS and PLMS are really bad. It's a drug that you have to wean off of or it makes you feel bad.

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

Re: New and going nuts

Postby ViewsAskew » Wed Dec 02, 2015 5:48 am

Hope the gabapentin works -

Image

Do make sure someone tests your ferritin! Even if you don't keep taking the ropinerole and even if the gabapentin works, if your iron is low - either serum ferritin or hemoglobin - you could reduce or eliminate symptoms with iron. Always worth trying!
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.

Jen
Posts: 31
Joined: Fri Nov 27, 2015 4:53 am

Re: New and going nuts

Postby Jen » Wed Dec 02, 2015 5:50 am

Yep, getting bloodwork tomorrow. CBC, ferritin, seratonin.

Meanwhile they should rename RLS to Demonic Limb Syndrome to make bosses everywhere understand better why we need our sick days.

Jen
Posts: 31
Joined: Fri Nov 27, 2015 4:53 am

Re: New and going nuts

Postby Jen » Thu Dec 03, 2015 3:17 am

Bummer.....first night of gabapentin at 300 and my legs are going nuts. Maybe a little less intense but no sleep is gonna happen tonite.
Hoping they let me up the dose right away .... Ropinirole made me feel pretty lousy so hope I can make the gabapentin work.

Jen
Posts: 31
Joined: Fri Nov 27, 2015 4:53 am

Re: New and going nuts

Postby Jen » Thu Dec 03, 2015 6:09 am

Coping better tonight despite a return of symptoms. Just a day or two ago I was melting down and feeling like I couldn't go on. Hope my doctor reacts quickly enough for me to get back to work before I lose my job.

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

Re: New and going nuts

Postby ViewsAskew » Thu Dec 03, 2015 6:33 am

That's one of the issues with gabapentin - the slow ramp up time. I had to get to about 1800 mg before it did anything. When you only increase by 300 mg at a time and do that every 3-5 days, that can create a lot of misery! And, you can't really go much faster because of the potential side effects. It's much better to go slow.

I wonder if it's better to try gabapentin encarbil first? It is metabolized differently. For the majority of people, it doesn't matter, but for a significant minority, it does. Given you could try the original version first and have it not work, maybe it's better to try the encarbil version first. If it does work, then you could try the older, cheaper original version. If the encarbil version didn't work, you'd know it wasn't worth trying the original.
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.

Jen
Posts: 31
Joined: Fri Nov 27, 2015 4:53 am

Re: New and going nuts

Postby Jen » Thu Dec 03, 2015 6:40 am

Interesting idea.
Ramp takes that long? Oh man.

Jen
Posts: 31
Joined: Fri Nov 27, 2015 4:53 am

Re: New and going nuts

Postby Jen » Thu Dec 03, 2015 9:14 pm

Doc just signed off on an increase to 600mg gabapentin for tonite.
Wish me luck!
Concerned about the rapid increase contrary to what I have read but I just have to trust my doc on this.

Interestingly, my psychotherapist who has been helping me cope really thinks this is all in my head. I have some mental exercises he would like me to try tonite if My legs go out of control again.

As agonizing as this is, it is pretty interesting at the same time. Brains are so mysterious!

Jen
Posts: 31
Joined: Fri Nov 27, 2015 4:53 am

Re: New and going nuts

Postby Jen » Fri Dec 04, 2015 7:53 am

600mg gabapentin has reduced my symptoms by about 80%!
Still awake and twitching, but MUCH more comfortable.
I am crying with relief.

One more dosage increase may give me my life back finally.

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

Re: New and going nuts

Postby Polar Bear » Fri Dec 04, 2015 1:37 pm

"""Restless leg syndrome needs a new moniker befitting the true agony and violence of the condition."""

Jen - This has been already tried.
viewtopic.php?f=5&t=9271
See this link.
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

Jen
Posts: 31
Joined: Fri Nov 27, 2015 4:53 am

Re: New and going nuts

Postby Jen » Fri Dec 04, 2015 3:50 pm

Omg.
The doctor who has been treating me abruptly dropped my case today because it says in their computer that my primary care doctor has been treating me as well. This was news to me since my primary care doc has not once responded to my calls or emails.
My call to primary care today got me a referral to sleep medicine, and sleep medicine will not see me until February.
No one will give me more gsbapentin at this point, but I am continuing to work the phones.
This is enough to send someone right over the edge.

JimmyLegs44
Posts: 88
Joined: Thu Oct 01, 2009 5:24 am

Re: New and going nuts

Postby JimmyLegs44 » Fri Dec 04, 2015 4:51 pm

You might want to try acupuncture. Any port in a storm, right? It worked well for me until I got too far into my withdrawal attempt. I'm still getting the treatments, but they are not as effective as they were initially; the DA withdrawal symptoms are just too severe. I'm confident it will work for me again once I achieve my baseline symptoms, after the nasty DA is well out of my system.
The best way out is always through. - Robert Frost

Jen
Posts: 31
Joined: Fri Nov 27, 2015 4:53 am

Re: New and going nuts

Postby Jen » Fri Dec 04, 2015 5:28 pm

Ooh that sounds promising! I will try to find an acupuncturist right away.
On Monday if I have not gotten help yet I will try another hospital system.

Polar Bear
Moderator
Posts: 7221
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: New and going nuts

Postby Polar Bear » Fri Dec 04, 2015 6:21 pm

Have you tried the hot shower/cold shower....
I prefer icy cold, hot doesn't help me at all.

Some folks have said that a hot bath helps, whilst lying in a hot bath could be enough to set me off.

I used to put my feet/lower legs into a bucket of icy cold water and splash the water upwards - it took about 20 minutes to calm the leg symptoms to allow me to try and get to sleep.
Didn't do much for my arms/shoulders though :(

In desperation, I've also tried the BioFreeze spray for pulled muscles, don't know that it helped much, maybe a little placebo effect.
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

Jen
Posts: 31
Joined: Fri Nov 27, 2015 4:53 am

Re: New and going nuts

Postby Jen » Fri Dec 04, 2015 10:20 pm

Thank the heavens, I have an appointment with a doctor next Tuesday. Sleep is imminent!
I have tried the hot bath, but will try the cold tonite.


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