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Re: New and going nuts

Posted: Wed Dec 02, 2015 5:22 am
by debbluebird
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.

Re: New and going nuts

Posted: Wed Dec 02, 2015 5:48 am
by ViewsAskew
Hope the gabapentin works -

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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!

Re: New and going nuts

Posted: Wed Dec 02, 2015 5:50 am
by Jen
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.

Re: New and going nuts

Posted: Thu Dec 03, 2015 3:17 am
by Jen
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.

Re: New and going nuts

Posted: Thu Dec 03, 2015 6:09 am
by Jen
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.

Re: New and going nuts

Posted: Thu Dec 03, 2015 6:33 am
by ViewsAskew
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.

Re: New and going nuts

Posted: Thu Dec 03, 2015 6:40 am
by Jen
Interesting idea.
Ramp takes that long? Oh man.

Re: New and going nuts

Posted: Thu Dec 03, 2015 9:14 pm
by Jen
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!

Re: New and going nuts

Posted: Fri Dec 04, 2015 7:53 am
by Jen
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.

Re: New and going nuts

Posted: Fri Dec 04, 2015 1:37 pm
by Polar Bear
"""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.

Re: New and going nuts

Posted: Fri Dec 04, 2015 3:50 pm
by Jen
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.

Re: New and going nuts

Posted: Fri Dec 04, 2015 4:51 pm
by JimmyLegs44
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.

Re: New and going nuts

Posted: Fri Dec 04, 2015 5:28 pm
by Jen
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.

Re: New and going nuts

Posted: Fri Dec 04, 2015 6:21 pm
by Polar Bear
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.

Re: New and going nuts

Posted: Fri Dec 04, 2015 10:20 pm
by Jen
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.