sleep issues

Anything on your mind that isn't about WED/RLS? It's nice to realize that there is life beyond this disease and have an opportunity to get to know our online family in a different context.
badnights
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Postby badnights » Sun Jul 24, 2011 3:34 am

Me too, I'm crying! God bless your hubby, and that lady doctor! finally something good will happen for you! Finally someone understands the tiniest part of your pain and IS DOING something about it!! I am so happy for you.
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Polar Bear
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Postby Polar Bear » Sun Jul 24, 2011 9:36 pm

For sleep and for body pain (not WED pain) my doctor wishes me to start on amnitriptiline (following one week on 10mg diazepam to give me some sleep). We are aware that amnitriptiline can have a reputation for exacerbating WED but are at the stage where it is a case of trying the amni... for sleep/pain and if necessary deal with any increased WED.

(Sorry, I know I have posted this info earlier in this thread, but I repeat the info for ease of reference.)

I would like to know if anyone is or has used amnitriptiline with success i.e. that it has had no effect on the WED.
Betty
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ViewsAskew
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Postby ViewsAskew » Sun Jul 24, 2011 9:45 pm

Someone here used to use it...Nadia maybe? She was successful. I seem to recall Hazel and a few others not. My SIL takes this sometimes (and has RLS/WED) and is not affected by it.

If I recall correctly, (and a search on the term would show for sure), most people knew with the first dose if it hurt or not. To that end, it might be best to take it on a night when you didn't have to go somewhere...or even see if doctor would agree to a "test" run during the day so that if the RLS/WED was worsened, it wouldn't cause you a nights sleep.
Ann - Take what you need, leave the rest

Managing Your RLS

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Polar Bear
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Postby Polar Bear » Mon Jul 25, 2011 2:00 am

Thanks Ann, I'm a bit ahead of myself here... but am considering that even if it causes a worsening of the symptoms - if it is the only way to get sleep and ease of body pain - will it be worth it and if necessary deal with any increase in WED?

I guess I could ask GP what I should do with regard to the WED should it increase, and take her some WED information.
Betty
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ViewsAskew
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Postby ViewsAskew » Mon Jul 25, 2011 2:09 am

Have you tried the European equiv of gabapentin or Lyrica? Both of these are often prescribed for body pain in fibro patients. And, both are typically RLS/WED friendly.

Another thing I understand fibro patients take are anti-depressants - that they can help. So, again, while amytriptiline is an older one, there are also many others that may help.

I think we do sometimes have to deal with increased WED when we have other issues...but I'm thinking you may have options to explore with your doctor in case this one does cause increased WED so you don't have to have increased WED.
Ann - Take what you need, leave the rest



Managing Your RLS



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Polar Bear
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Postby Polar Bear » Mon Jul 25, 2011 2:39 am

My d-in-law today spoke to me about gabapentin (which I have not tried) and explained how it is the updated version of amnitriptiline. She tried to explain very simply that the gabapentin fits into the little receptors very nearly and so helps neurological pain without much side affect i.e. not so much sleepiness, whereas amnitriptline doesn't fit into the receptors just so well and so emits the side effect of helping sleep very well.

However, GP is not prescribing the Amnitriptline solely for body pain but for my sleep issues as she will not go the Temazepam route.

But I will mention the Gabapentin to her.
Tho that won't address my lack of sleep.
Betty
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ViewsAskew
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Postby ViewsAskew » Mon Jul 25, 2011 6:51 am

Oh, yeah, forgot that it's both for sleep and pain.

Hopefully the amytriptiline will do both...but if it doesn't, there are alternatives.

Gabapentin makes many of us that take it sleep very, very well. It makes me sleep almost too well.
Ann - Take what you need, leave the rest



Managing Your RLS



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badnights
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Postby badnights » Mon Jul 25, 2011 7:09 am

Gabapentin made me very sleepy. Pregabalin (Lyrica) made me so sleepy I was unable to continue taking it. If you're thinking of those, Horizant might something to think about too; if it's truly a gabapentin pro-drug, it should be better than gabapentin, in terms of constancy of effect.
Beth - Wishing you a restful sleep tonight
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Polar Bear
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Postby Polar Bear » Tue Jul 26, 2011 3:52 pm

Got the result of my ferritin blood test today - 97 which is pretty good. This is my natural reading, i.e. I've done nothing to try to raise it. Actually I think last year it was around 110. Wonder why the drop?
Betty
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moonlight
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Postby moonlight » Tue Jul 26, 2011 11:31 pm

hi av already posted this in another section

as yous know am bipolar and have very erratic sleep and rls on top is a nightmare

well just now rls is very good behaving its self

sleep no to sleep tabs , they dont give good sleep they only shut you off

our street light is out so room is dark and ive had ten nights sleep , brill feel so much better even tho am in depressive episode at mo.

have made blackouts for window so hope sleep will continue

hope this might help

xxx
sleep is not only a dream

ViewsAskew
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Postby ViewsAskew » Wed Jul 27, 2011 3:11 am

PB, I've been having trouble staying asleep with Mirapex - it makes me wake up a lot after about 5 hours of sleep. The WED is gone, but I keep awakening. I took gabapentin last night to see what would happen - 8 hours before I awakened. Now, I've been groggy all day, but maybe if I did this regularly, that wouldn't happen. And, I'm OK with groggy sometimes if it means I actually sleep through the night!

Of course, that's me....but maybe you'd have similar success. When I take am Ambien, it doesn't keep me asleep.
Ann - Take what you need, leave the rest



Managing Your RLS



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Betty/WV
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Postby Betty/WV » Wed Jul 27, 2011 4:13 am

One of the side effects of Mirapex is INSOMNIA. I never sleep more than 2 or 3 hours at a time. I would love 5 hrs of sleep. Then I am tired and sleepy all day. Now I am so sleep deprived that I can't drive. I have fallen asleep 3 times at the wheel. On top of that and all my health issues I am suffering from depression. (who wouldn't be). I don't know what is next. I'm beginning to not want to go out of the house. Agrophobic???(spelling).

I'm just tired of it all, the being tired, depressed, doctors, meds, being fat,the whole bit.

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

ViewsAskew
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Postby ViewsAskew » Wed Jul 27, 2011 6:58 pm

Betty, have you tried gabapentin or Lyrica? Lyrica is expensive, but pretty sure gabapentin comes in a generic.

Neither of them control my WED, but both really work wonders to keep me asleep.
Ann - Take what you need, leave the rest



Managing Your RLS



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Polar Bear
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Postby Polar Bear » Wed Jul 27, 2011 7:21 pm

Ann, I am going to mention gabapentin to my GP when I see her tomorrow with regard to the sleep. (is gabapentin supposed to help control WED also).
Betty
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Polar Bear
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Postby Polar Bear » Wed Jul 27, 2011 7:44 pm

Today I had an appointment with Consultant Rheumatologist. He looked through a document I had prepared detailing all of my conditions and symptoms. Officially I was seeing him regarding my Temporal Artritis which means inflammation of the white cells which swell and cause pain and blockage in the temporal artery above the ear and for which I take steroids.

On GPs instructions I showed him the document as well as my sleep diary. GP thought my aches and pains may be linked to the Temporal Artritis.

Consultant read the document and sleep diary with interest, said it was excellent information. He had me complete a tick list, about 30 questions. He then looked at my neck and shoulder and my feet, had me walk barefoot, turn my feet until he could see what made them hurt.

He concluded that I had a classic case of fibromyalgia. My neck and feet were ordinary arthritis. Body pain/legs/hands/wrists were fibromyalgia.

He has referred me to a podiatrist to have inserts made for my shoes to try reduce the feet pain.

Consultant said that fibro is a vicious circle which generally starts will an illness or disease (lets say WED), there is also likely to be an anxiety/stress/trauma situation (lets consider living for 22 years with first hubby who was paranoid schizophrenic). This leads to a likely poor quality sleep, not helped by the WED, which develops into a more chronic sleep condition. Lack of quality sleep, no restorative sleep, leads to muscle fatigue, muscle ache, weakness, poorer sleep, more severe fatigue, and so the circle continues.

He says that amitriptyline in the medication of choice for fibromyalgia and will help me sleep. But he also said.... you may have issues with amitriptyline and your RLS !! I was impressed to hear him say this, i.e. that he actually knew this. He also said that WED and fibro and very commonly found together.

So tomorrow I see my GP who wants me to start amitriptyline to replace the Diaz 10mg that she gave me for sleep. I have already told her that this may not be good for WED.

I emailed Dr B who replied that I should 'Beware..... this has a severe propensity to increase RLS'

Tomorrow I will show the email of DR B, to GP, I will quote the consultant that I saw today, and I will show her the Mayo Clinic Algorithm. If she still wishes me to go onto the amnitriptyline I shall ask her, what is your plan if this goes wrong for me.

I will also ask her will she give me a supply of an opoid stronger than tramadol (which I already take) so that should I have a very bad situation on a weekend then I have a backup until I can get to see her.

I could suggest the gabapentin for sleep as Ann suggests, but this would not resolve the aches/pains of the fibromyalgia.

And...... darn it, yesterday my front tooth crown sheared off at the gum. Dentist very kindly squeezed me in and repaired it as best she could using pins. 'She reckoned it may not last and crown may no longer be feasible. Today the repaired crown is wobbling. An implant is £2.5k says she........... Definitely not paying for an implant.
DARN..... DARN.... and DARN again.
Betty
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