New and going nuts

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

New and going nuts

Postby Jen » Fri Nov 27, 2015 2:36 pm

About 2 months ago I stopped taking Abilify , which I had been on for years for psych. I am 44. A week into the withdrawal process, which was miserable, I developed severe rls. Withdrawal took about 2.5 weeks and I now feel fantastic but the rls is still with me after all this time.

It starts about 5pm every night unless I watch my evening tv standing up. If I manage to fall asleep, it wakes me back up within 15 minutes. It goes on until about 3-5am. I get up for work at 5:30 so needless to say I am exhausted. My husband says My legs twitch in my sleep and have for many years.

I am taking magnesium, iron, calcium, vitamins, vitamin D. I do take lexapro and have for many years.
I exercise regularly and do yoga. I have tried weighted blankets and have some compression socks coming Monday.

Considering gabapentin. Waiting for a neurology consult.

So, any advice? Could abilify have triggered or masked this?

Hugs to all....this is torture!

ViewsAskew
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Location: Chicago

Re: New and going nuts

Postby ViewsAskew » Sat Nov 28, 2015 7:19 am

Yep - it could have.

It sounds like you have PLMS - periodic movements in sleep along with the RLS/WED. I do, too. For me, the PLMS was originally much worse, but I took a drug that affected neurotransmitters and it created severe RLS, too.

Do get your serum ferritin checked - we need to have higher levels that people without RLS.

In the meantime, hot baths might help. So might heating pads (don't burn yourself or your house down!!!) Or cold - while many of us respond to hot, some of us find cold works better - and some of us get relief from starting hot, then plunging into cold.
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 » Sat Nov 28, 2015 7:48 pm

Just sent a message to my doctor about trying to quit taking the escitalopram......been reading about that as a possible trigger.

Hot bath....will try tonite!

ViewsAskew
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Location: Chicago

Re: New and going nuts

Postby ViewsAskew » Sun Nov 29, 2015 8:51 am

Any SSRI can make symptoms worse - the rates vary from 2% to 20% of people have increased symptoms when taking them. The worst part is you can't know ahead of time as each of us is different.

If you started it when you stopped the Abilify, that easily could be the culprit. Our brains are very complex and once you take any drug that changes the chemicals in them, RLS is a possible result!
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.

Polar Bear
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Location: N. Ireland

Re: New and going nuts

Postby Polar Bear » Sun Nov 29, 2015 1:23 pm

I have been using citalopram which is within the same 'family' for several years without any seemingly ill effect.
We are all very different and the journey of trial and error may be necessary.
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 » Sun Nov 29, 2015 11:52 pm

I ended up at urgent care today and the doctor gave me a week supply of Requip to get me through until my regular doctor comes up with something. I hope it works because I cannot take any more of the horrible feelings in my legs every night.

This doctor really felt it was likely that sudden abilify withdrawal was the culprit. He was pretty upset that my other doctor took me off of it cold turkey. I am so sick of this nonsense with doctors...it has been a very long year for me.

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

Re: New and going nuts

Postby Jen » Mon Nov 30, 2015 4:30 pm

Requip relieved my leg symptoms 99% but despite blissful comfort I was wide awake all night. Been trying to get a doctor to see me all day but they keep bouncing me around because it is sleep related. The sleep center they keep referring me to isn't answering the phone nor returning my calls. They are only open part time.
This is insanity.

JimmyLegs44
Posts: 87
Joined: Thu Oct 01, 2009 5:24 am

Re: New and going nuts

Postby JimmyLegs44 » Mon Nov 30, 2015 4:56 pm

If you are now considering medication for your RLS because the Abilify was indeed masking your RLS symptoms, I would encourage you to look at the alpha-2-delta ligands (gabapentin, Lyrica, Horizant) first. If for some reason these don't do the trick, then try the dopamine agonists (Mirapex, Requip). Some RLS experts no longer consider dopamine agonists to be the first-line treatment due to the risks of augmentation. Unfortunately, many doctors are still not well-versed on the risks of augmentation with DA's.

I'm sure the Requip will work well for you at first, but it is almost a certainty you will develop augmentation if you stay on this medication long-term. Many of us have suffered through augmentation and the related DA withdrawal issues, and I for one would not have started on a DA 13 years ago, had I known then what I know now.
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 » Mon Nov 30, 2015 4:58 pm

Thanks....yeah I have gathered as much from my research. I am hoping to try gabapentin if I can get a doctor to actually take my case. Getting bounced around currently.

Polar Bear
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Location: N. Ireland

Re: New and going nuts

Postby Polar Bear » Mon Nov 30, 2015 8:00 pm

Such madness trying to find a doctor to provide treatment.
Although the DA Requip may not be the best first route - it is good for you to know that they do provide some relief.

Have you heard of this book, it is excellent, easy to read and in particular can be used for discussion purposes with your doctor with regard to treatment.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon.
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 » Mon Nov 30, 2015 8:19 pm

Thank you very much. It is such a comfort hearing from people who truly understand how bad the sensations are. I wish none of us did.

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

Re: New and going nuts

Postby Jen » Tue Dec 01, 2015 9:58 pm

After two infuriating days lost in the medical meat grinder, I have secured a gabapentin prescription and referral to sleep medicine. I had to completely melt down to get their attention, but it seemed to make the required impression.

Apparently sleep medicine is booked three months out. Wheeee!

Rustsmith
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Location: Pueblo, Colorado

Re: New and going nuts

Postby Rustsmith » Wed Dec 02, 2015 2:01 am

Whatever it takes!

The sleep clinics are so used to dealing with people with sleep apnea, who feel no discomfort, that they don't know how to act when someone who is in pain or is SERIOUSLY sleep deprived contacts them. Other doctors have a bit of an idea of emergencies, unfortunately the doctors that we deal with are either so busy with RLS and other neuro issues that they cannot squeeze another person in or else they just don't understand that we cannot afford to wait that long.
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.

Yankiwi
Posts: 345
Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

Re: New and going nuts

Postby Yankiwi » Wed Dec 02, 2015 3:11 am

Sometimes it takes a meltdown to get attention. Keep us posted on how the gabapentin helps/affects you. I'm thinking of trying it but I'm scared of RLS meds. I take .25mg of ropinerole and wouldn't dream of taking more but it isn't really enough.

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

Re: New and going nuts

Postby Jen » Wed Dec 02, 2015 5:14 am

You guys are the best :)

I start gabapentin tomorrow (we are in the middle of an ice storm), so for tonite it is round 3 of Ropinirole. My experience of this drug so far is 99% relief of leg symptoms but at the price of insomnia and a wicked headache. I'm grateful for it though! I'm awake but not going nuts anymore.

Hoping to get some sleep soon before I lose my job from too many sick days. These invisible and misunderstood diseases make talking to the bosses rough going. The fact that WED has a very harmless sounding common name makes things harder. Restless leg syndrome needs a new moniker befitting the true agony and violence of the condition.
Last edited by Jen on Wed Dec 02, 2015 5:23 am, edited 1 time in total.


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