Discussion of Adenosine paper

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.
Bronwen
Posts: 23
Joined: Thu Oct 05, 2017 4:13 pm
Location: South Africa

Re: Discussion of Adenosine paper

Postby Bronwen » Sat May 26, 2018 4:47 am

Oops, I meant hyper-insomnia.

But if anyone has any hypersomnia to spare, I would like to have it now and then.

stjohnh
Posts: 532
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Discussion of Adenosine paper

Postby stjohnh » Sat May 26, 2018 1:48 pm

Bronwen wrote:Oops, I meant hyper-insomnia.

But if anyone has any hypersomnia to spare, I would like to have it now and then.


LOL.
I'm glad you are able to keep a sense of humor, it is frequently quite difficult to for us with RLS that are having problems to see anything humorous at all in their life.
Blessings,
Holland

Bronwen
Posts: 23
Joined: Thu Oct 05, 2017 4:13 pm
Location: South Africa

Re: Discussion of Adenosine paper

Postby Bronwen » Mon Jun 04, 2018 1:04 pm

I have re-read this thread and attempted to understand the paper.

It is possible that I may fit all the points outlined by the authors and your good selves.

I have had to wear earplugs since I was about eighteen years old because I am so easily awakened by noise. I have not slept without them for 55 years, I cannot.
I also have a massive startle response during the day, and I am hypersensitive to noise and to other sensory inputs..... I always have been, but I thought it was normal. (When you live with things from early childhood, you take them for granted, and don't ask for help, even if you suffer).
I have thought of myself as what is now called a 'VSP', a very sensitive person.
These sensitivities started decades before I had ever seen an opioid.

Some time ago I told my doctor that I was always exhausted, but never 'sleepy'. And then I found it in an academic paper, glutamate gone rogue.....'never sleepy'.

My WED has been active at night since my teens, and in retrospect, I remember never being able to keep my toes, feet and lower limbs still as a small child. I moved without noticing it, but it was often remarked by family and teachers.
I still do it, I'm doing it now.

But now I wonder about the PLMD, which I had never heard of prior to joining this group.
I certainly often need to exercise my limbs rather violently during the night, while lying in bed, but it is not at all the same as WED. It feels 'needful', but quite enjoyable.
You do not have to get up and walk, you just lie there and kick the bedclothes to bits.
I have never consulted a sleep specialist or been in a sleep laboratory, so I cannot know what happens when (if) I sleep.
I do know that on most mornings my bed is utterly chaotic, it looks like the Himalayas.
I look like the rubble at the bottom.

I would appreciate a response from those who understand the science better than I. I may be entirely missing the point.

Rustsmith
Moderator
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Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Discussion of Adenosine paper

Postby Rustsmith » Mon Jun 04, 2018 3:06 pm

Bronwen, you have not missed the point. 85% of those of us with RLS also have PLMD. PLMD is a rhythmic movement that occurs while you are asleep. With PLMS, you are not aware of it, but you are moving and this can cause microawakenings. You are also not aware of these, but they disrupt your sleep and can prevent you from getting into the deeper levels of sleep that you need to be properly rested. Diagnosis requires a sleep study, but a sleep partner who reports being regularly kicked is also a good indicator. In the absence of these, your mountain of bedclothes is also a pretty fair indicator of PLMS.

To find out more about adenosine, the Foundation has a webinar of the topic that is presented by the author of the paper on July 18. All you need to do to listen in is register. When you register, you also get to submit a question that may be selected for Dr Ferre to answer at the end of the webinar.
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.

badnights
Moderator
Posts: 4841
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Discussion of Adenosine paper

Postby badnights » Thu Jun 07, 2018 4:43 am

I certainly often need to exercise my limbs rather violently during the night, while lying in bed, but it is not at all the same as WED. It feels 'needful', but quite enjoyable.
You do not have to get up and walk, you just lie there and kick the bedclothes to bits.
I have never consulted a sleep specialist or been in a sleep laboratory, so I cannot know what happens when (if) I sleep.
I do know that on most mornings my bed is utterly chaotic, it looks like the Himalayas.
Are you awake or asleep when making the Himalayas (or should I say, climbing mountains)? It seemed to me you're awake since you report feelings associated with the activity.

If you're asleep, and the kicks are spaced regularly and the movement made by the leg is repeated the same way, then those kicks might be a manifestation of PLMS. If you're awake but the kicks are happening completely involuntarily, and the other things are true (regular, repetitive movements), it might be PLMW (Periodic Limb Movements in Wakefulness). If you're awake and are controlling the movements, they aren't PLM. They could be WED/RLS

- what happens when you stop them from moving? Does the urge to move them grow stronger? If so, it's a manifestation of WED/RLS. No sensations need be present (although they almost always are) so if you have the urge to move (which does have to be present) but no sensations, that can still be WED/RLS.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

mutsy67
Posts: 19
Joined: Sat Jun 19, 2010 5:37 am

Re: Discussion of Adenosine paper

Postby mutsy67 » Mon Jun 25, 2018 5:19 am

[quote="Bronwen". I have had to wear earplugs since I was about eighteen years old because I am so easily awakened by noise. I have not slept without them for 55 years, I cannot.
I also have a massive startle response during the day, and I am hypersensitive to noise and to other sensory inputs..... I always have been, but I thought it was normal. (When you live with things from early childhood, you take them for granted, and don't ask for help, even if you suffer).
I have thought of myself as what is now called a 'VSP', a very sensitive person.
These sensitivities started decades before I had ever seen an opioid.
[/quote]

Bronwen have you had a full thyroid panel (T3, T4, Free T3, Free T4, Reverse T3, and antibodies)? Have you had adrenal hormones checked? These types of reactions and sensitivities can occur in a hyperthyroidism state, as well as in adrenal fatigue. Additionally, deficiency in several different hormones can cause severe insomnia. RLS struggles stress out bodies and over time our adrenal glands wear out from constantly producing cortisol in an effort to meet your body's demands.


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