Results of Sleep Test from June 2022

[AsleepInYorkshire]

The Beginning of the End?
As I take pen to paper, I can say, hand on heart, I have no idea how long this post will be. As many of you are are more than aware I can ramble a bit . Accordingly, can I warmly suggest you have a cup of tea or coffee, or whatever your choice of drink may be, ready to imbibe. Well it is a cafe isn't it . If it's a bit later in the evening I suppose it could be a pub too

Recap
Many of you will already be aware of the back story which brings me to today. For those who haven't I'd like to bring you up to date please. Now this will involve me talking all about myself . I know, I know, as well as my incredible ability to ramble I also have an exceptionally poor sense of humour, which loiters between dryer than a dry sandy desert and only of any understanding to me .

I'm 60. I have suffered with mental health problems since I was approximately thirteen. The symptoms have deteriorated over that time. The impact they have had has been nothing short of life changing, not just for me, but those closest and around me. I'm not going to bore you with the detail. I think a basic summary will suffice.

Age 13 - symptoms of excessive daytime tiredness, rapid decline in results at school.
Age 17 - first visit to GP. Prescribed sleeping tablets.
Age 38 - saw my 6th GP for the first time. Diagnosed with clinical depression. GP agreed diagnosis was 21 years late.
Age 54 - paid to see sleep consultant privately. Diagnosed with severe obstructive sleep apnea.
Age 60 - home sleep tests confirm diagnosis for severe obstructive sleep apnea was incorrect
Age 60 - further tests at hospital carried out and new diagnosis received on 6th September 2022.

The Diagnosis
I have Willis-Ekbom disease. The condition is better known as restless leg syndrome (RLS) or dependent upon the symptoms, periodic limb movement (PLM). I'd like to explain a little about the condition please. Not least because when I was first told my limited knowledge was way short of where it should be on the subject.

This is a neurological disorder. As it "usually" interferes with sleep it is also known as a sleep disorder. However, this isn’t a condition that only appears during sleep. It’s a 24hr, 7 day a week disease. My symptoms become worse at night and interfere with my sleep. That lack of sleep ultimately lead to mental health problems. For me it’s been a journey of ever-increasing health issues and an ever decreasing quality of life.

Pregabalin
I’ve been prescribed a drug called pregabalin. For the last month I’ve been stepping up incrementally to my clinical does, which I start on Thursday. The side effects have been difficult. Muscle aches, no I’ll go so far as to say pains and headaches that put hangovers to shame. I’m not looking forward to the final increase on Thursday night. There are other side effects to such as dizziness and my right leg doesn’t always go down where it normally should.

Not Triggers – Intensifiers or Amplifiers
There are several things which intensify the symptoms. These aren’t triggers. They amplify symptoms.

1. Stress
2. Antidepressants
3. Antihistamines
4. Alcohol

I’ve been taking antidepressants and antihistamines for decades now. I’ve stopped the antihistamines and am withdrawing from my antidepressants, the latter having some negative impacts too.

Hope
I am tired of being tired. I am tired of being half awake and half asleep. I’m tired of it all. I don’t hope anymore. I’ve done all that in the past and every time the diagnosis wasn’t forthcoming, or it was wrong. I’ve parked up hope.

Prognosis
Forty percent of those diagnosed [correctly] with restless leg syndrome have other comorbid issues. I have some circadian issues. My sleep patterns are poor. My usual sleep pattern is 3am to 11am. This could be a symptom of the RLS. It could be a problem in its own right. My sleep doctor will deal with this if and when he has the RLS under management. And, even then he has warned this could be a long journey.

Coffee
Each morning, whenever dawn breaks in my world I have a cup of coffee. It’s 50% lactose free milk, with 50% almond milk and two teaspoons of caramel flavoured syrup. The caffeine helps to bring me round from the pregabalin hangover. During the day I have at least one more coffee. But not after 4pm. Who would have known the Comfort it would bring.

Early Results
If I don’t try to force a normal sleep wake cycle on myself, I seem to be getting slightly better sleep. I’m still quite flat during the day though and my energy levels are poor. I’ve still had to give ground on some days and sleep.

For Now
I am taking the rest of the year off work. I will not be returning to the “fast paced”, high stress environments I have foolishly put up with previously. I am worth more than that. I will be taking each day at a time.

Thanks for listening

AiY(D)

[doug2500]

I've always felt you can deal with most things if you have a decent night's sleep.

I can only send you sympathy and best wishes.

[MrFoolish]

There's a guy on the web called Dr Berg who talks about various medical conditions from a nutritional point of view. I find him interesting to watch but TBH I've no idea if his advice is any good or not.

I note he's done a video about restless legs syndrome:

https://www.youtube.com/watch?v=QAoq14NlDQc

Good luck! (and watch at your own risk!)

[ReformedCharacter]

There's a guy on the web called Dr Berg who talks about various medical conditions from a nutritional point of view. I find him interesting to watch but TBH I've no idea if his advice is any good or not.

I note he's done a video about restless legs syndrome:

https://www.youtube.com/watch?v=QAoq14NlDQc

Good luck! (and watch at your own risk!)

Dr. Berg is listed on QuackWatch:

Eric Berg, D.C. operates The Health and Wellness Center in Alexandria, Virginia, has been reprimanded, fined $1,500, and ordered to stop using and promoting Body ResponseTechnique (BRT), Nambudripad’s Allergy Elimination Technique (NAET), Contact Reflex Analysis (CRA), and testing with an Acoustic Cardiograph (ACG). BRT, NAET, and CRA involve bogus muscle tests that supposedly are related to body organs. The ACG is claimed to provide a “readable signature” of heart sounds” that is used to detect imbalances of body chemistry. The alleged problems are then corrected with dietary supplements. The consent agreement (shown below) notes that Berg had made many therapeutic claims that were not supportable by reasonable scientfic or medical evidence.

https://quackwatch.org/cases/board/chiro/berg/

It looks like he's a chiropractor.

RC

[servodude]

It looks like he's a chiropractor.

..if it walks like a duck

I am taking the rest of the year off work. I will not be returning to the “fast paced”, high stress environments I have foolishly put up with previously. I am worth more than that. I will be taking each day at a time.

That sounds like a great decision.

I am absolutley staggered that the "sleep consultant" you saw privately could misdiagnose OSA for so long.
I can easily imagine them missing restless legs as it doesn't show up obviously in a polysomnigraph (often legs aren't wired up) But apnoeas normally show up as clear periods where you literally stop breathing - for long enough that your SpO2 drops sufficiently that your brain decides to give you a jolt. I guess, if I am being generous, perhaps they thought they were seeing the results (arousals ... no sniggering that's what they're called) but not perhaps capturing the cause.

Anyways - does this mean you can ditch the CPAP? That would be a silver lining

Good luck
-sd

[MrFoolish]

Re. your warning about the guy, RC, it may well be fair. But if you prefer more mainstream/commercial medicine, I would just say try to find a large pharmaceutical company that hasn't been rebuked or fined over something or other.

[Clariman]

What a journey you have been on. I truly hope that your recent diagnosis allows you to become more rested and that helps the other issues that you have had to deal with since being a teenager.

Take care
Clariman

[ReformedCharacter]

Re. your warning about the guy, RC, it may well be fair. But if you prefer more mainstream/commercial medicine, I would just say try to find a large pharmaceutical company that hasn't been rebuked or fined over something or other.

It isn't a matter of what I prefer. Some time ago I posted a link to one of Dr. Berg's videos about fasting. Most of it was generally accepted science, and someone here pointed out the entry on Quackwatch. As the link on his video mentions, he isn't actually a Dr., it's an assumed title. And he is selling stuff. I've watched quite a few medically themed YouTube videos (mainly about diet) and it is difficult to sort the good from the not so good but when someone is selling a product that's usually a clue that they may not be giving information generally accepted as real science. There are a fair few snake-oil salesmen out there unfortunately.

RC

[servodude]

Re. your warning about the guy, RC, it may well be fair. But if you prefer more mainstream/commercial medicine, I would just say try to find a large pharmaceutical company that hasn't been rebuked or fined over something or other.

It isn't a matter of what I prefer. Some time ago I posted a link to one of Dr. Berg's videos about fasting. Most of it was generally accepted science, and someone here pointed out the entry on Quackwatch. As the link on his video mentions, he isn't actually a Dr., it's an assumed title. And he is selling stuff. I've watched quite a few medically themed YouTube videos (mainly about diet) and it is difficult to sort the good from the not so good but when someone is selling a product that's usually a clue that they may not be giving information generally accepted as real science. There are a fair few snake-oil salesmen out there unfortunately.

RC

Really good points that I totally agree with.

I do think the original post was with the intent to help though and there is a big component of dietary influence in good sleep health... even if there are charlatans that try and exploit that.

So if you want to start a post to that effect somewhere that isn't CC I'll be there on my high horse in a jiffy to tell you about some of the shite I've heard in years of looking at sleep studies

[AsleepInYorkshire]

What a journey you have been on. I truly hope that your recent diagnosis allows you to become more rested and that helps the other issues that you have had to deal with since being a teenager.

Take care
Clariman

Hi Clariman, well hi everyone,

Sometimes having a space to talk without being judged can be helpful. Your extremely thoughtful and considerate inclusion of such a space, a cafe, all your support, kind words and suggestions, are a testament not only to you all but to the goodness that makes us all that bit more human.

I will try and join in, from time to time

AiY(D)

[88V8]

I have .... restless leg syndrome (RLS) or dependent upon the symptoms, periodic limb movement (PLM).

I have that to a mild degree. I link it to the development of varicose veins which has crept up on me.
My legs twitch a little when first I go to bed.
My wife has the same problem, fortunately after a few minutes, for both of us it goes away.

I am by nature a night owl. I used regularly to go to bed after 2400h, and I worked in a high-stress job.
Now, I'm retired and I head for bed at 2200h.
When first I retired I still did the 2400h thing.

The extra kip makes a big difference in well being, for me I think more so than being retired, although the effect of the extra sleep takes a few months to work through.
I hope you can continue to improve.

V8

[bungeejumper]

Warning, quack remedy incoming. My wife used to suffer pretty badly with restless legs, as her mother had before her. The difference was that her poor mother had never been told to try magnesium citrate. Worked pretty well instantly on the wife, who has been free of the problem ever since. (And that's around twenty years now.)

Which is not to say it will work for everybody. But the tablets won't go to waste. You can use them on fruit trees to increase crops and improve ripening. Not a lot of people know that.

BJ

[kempiejon]

Warning, quack remedy incoming. My wife used to suffer pretty badly with restless legs, as her mother had before her. The difference was that her poor mother had never been told to try magnesium citrate. Worked pretty well instantly on the wife, who has been free of the problem ever since. (And that's around twenty years now.)

Which is not to say it will work for everybody. But the tablets won't go to waste. You can use them on fruit trees to increase crops and improve ripening. Not a lot of people know that.

BJ

I like a bit of quakery, so I was interested to see what about Magnesiyum Citrate and found this

Magnesium citrate is used to treat occasional constipation on a short-term basis. Magnesium citrate is in a class of medications called saline laxatives. It works by causing water to be retained with the stool. This increases the number of bowel movements and softens the stool so it is easier to pass.

It seems Magnesium anecdotally might help PLMD, RLS and Ekbom-willis disease. Citrate is one of several available magnesium supplements.

[Lootman]

Warning, quack remedy incoming. My wife used to suffer pretty badly with restless legs, as her mother had before her. The difference was that her poor mother had never been told to try magnesium citrate. Worked pretty well instantly on the wife, who has been free of the problem ever since. (And that's around twenty years now.)

Which is not to say it will work for everybody. But the tablets won't go to waste. You can use them on fruit trees to increase crops and improve ripening. Not a lot of people know that.

I like a bit of quakery, so I was interested to see what about Magnesiyum Citrate and found this

Magnesium citrate is used to treat occasional constipation on a short-term basis. Magnesium citrate is in a class of medications called saline laxatives. It works by causing water to be retained with the stool. This increases the number of bowel movements and softens the stool so it is easier to pass.

It seems Magnesium anecdotally might help PLMD, RLS and Ekbom-willis disease. Citrate is one of several available magnesium supplements.

My wife has been taking Magnesium Citrate for a few years in the evening. She clams that it helps her sleep, which is why she takes it as she does not have any of the ailments that you cited.

I never have a problem falling asleep but tend to wake up in the early hours. Less of a problem these days since I can always take a nap during the day if I wish. In fact the whole idea of sleeping 8 hours a night goes away when you are retired. You can sleep when you are tired and want to, rather than when society tells you that you should.

But my wife still works full-time so she needs her nighttime slumber.

[Sunnypad]

AiY

Thank you for sharing. I hope it's okay for me to respond in this way...I often rage when people say how great the human body is, how miraculously it works. Things like insomnia, depression, dyspraxia etc etc don't seem like a big deal to people who don't have them. I have occasional RLS, not sure if it's medication related.

I now just avoid the doc as much as possible.

I hope you get some help from Pregablin. You will, I'm sure, be helped by the time off.

Left to myself, 3am to 11am would be normal for me in summer. In winter I'd opt for a slight change in order to get more daylight. It is hard to schedule normal life round this cycle though I've been lucky to get jobs with later starts.

I recently met a chap who used to grind his teeth till he retired. He ground them so badly you can barely see them when he smiles. It stopped at retirement. I daresay a lot of problems stop then!

I also have a neighbour whose insomnia "ceased to matter" when she retired.

I hope you have some nice plans for your time off.

[Sunnypad]

AiY

Thank you for sharing. I hope it's okay for me to respond in this way...I often rage when people say how great the human body is, how miraculously it works. Things like insomnia, depression, dyspraxia etc etc don't seem like a big deal to people who don't have them. I have occasional RLS, not sure if it's medication related.

I now just avoid the doc as much as possible. Your point about amplifiers is excellent. I think some docs don't see a difference between triggers and amplifiers.

I hope you get some help from Pregablin. You will, I'm sure, be helped by the time off.

Left to myself, 3am to 11am would be normal for me in summer. In winter I'd opt for a slight change in order to get more daylight. It is hard to schedule normal life round this cycle though I've been lucky to get jobs with later starts.

I recently met a chap who used to grind his teeth till he retired. He ground them so badly you can barely see them when he smiles. It stopped at retirement. I daresay a lot of problems stop then!

I also have a neighbour whose insomnia "ceased to matter" when she retired.

I hope you have some nice plans for your time off.

[Sunnypad]

Wondering how you are AiY
Hope it's going all right

[gnawsome]

Warning, quack remedy incoming. My wife used to suffer pretty badly with restless legs, as her mother had before her...

My late wife suffered similarly with RLS for many years until she read somewhere that relief might be obtained by putting a potato in her chair by her thigh.
She tried it and it worked!
Whatever the reason I've no idea but it was such a relief to not see her legs jerking involuntarily.
Maybe quackery, maybe psycological but as a virtualy nil cost option that brought great comfort I couldn't not mention it

[bungeejumper]

My late wife suffered similarly with RLS for many years until she read somewhere that relief might be obtained by putting a potato in her chair by her thigh.
She tried it and it worked!

Indeed, the power of suggestion is a wonderful thing. And there's plenty about the working of the brain that science doesn't understand yet. Who cares? If it worked for your wife, it worked for your wife.

BJ

[AsleepInYorkshire]

Wondering how you are AiY
Hope it's going all right

Hi Sunnypad,

Sorry I missed your post. I'm now on my clinical dose of pregabalin. It's a step up process to get to the clinical dose. The side effects have been quite difficult to cope with [horrendous at times]. I won't spend time describing them but I wasn't aware that medication could cause the amount of pain I've been through. I'm still experiencing some pain albeit somewhat less than previously.

I'm not sleeping as much during the day as I used and not feeling excessive daytime sleepiness like I used to. However, I don't have bundles of energy and spend a lot of time each day sat and when I get up to do physical stuff I get exhausted very quickly.

I think I've moved in the right direction but I'm still far from being fit for a great deal. My 24hr clock is still all over the place. I seem to sleep from 2am to about 11am. I've been trying to get back to a 11pm to 8am sleep wake cycle but with little success.

My sleep doctor did say there were no guarantees and we could be working on a management strategy for some time.

I went to see a GP last Tuesday. I've never seen her before. My GP retired recently and I wanted to find a replacement. She got it straight away an realised I needed a GP who had my full back story. She's sending me for blood tests, including those to do with my memory issues and I have a 20 minute appointment with her a few days afterwards.

My good lady had a double discectomy a week ago. She's off work until Christmas. I'm looking after her. In the New Year I'd like to be able to be fit for work. My skills are in demand and I can earn very good money when I'm working. I want to be able to work for another five years. It will be part time as I need to protect my health. But I can still bring in a very healthy income none the less. And that's fortunate. Before I shuffle off this mortal coil I need to ensure my good lady and daughter have something to fall back on financially.

I'll get that right or d*e trying.

Thank you for asking how I'm getting along

Take care

AiY(D)
Darrell