Partner has REM behavioural sleep disorder ... I'm so anxious

Hi,

My lovely partner of 5 years has been experiencing what I believe is RBD. This means he has vivid, unpleasant dreams and can lash out with his arms. I've been accidentally clonked a couple of times and have taken myself off to the next room to sleep!

I came upon this diagnosis when I googled and it frightened me terribly. Many older men (my partner is 65) have this as a pre-curser to Parkinsons. He also suffers from constipation and dizziness when getting up too suddenly (both of which can be early signs). Other than this he is fit and strong and attends the gym 3-4 times a week.

I've told my partner my concerns about the REM sleep disorder but not the implications it may mean. He is off overseas to England in 2 weeks (for a month) with his 94 year old mother (she's incredible), so I didn't want to put my fears and suspicions onto him.

I've been down the anxiety hole for the last week (internalising all this) and have started counselling today so am feeling a bit better. I'm also addressing my HA issues again, which is long overdue.

My counselor suggested I ask my partner if he will see his Dr (with me) before he goes overseas. I've done this, and we are going Thurs morning. Initially I felt relieved but now I feel guilty as I maybe should have arranged this once he came back from this trip as I don't want anything to spoil it for him.

I realise I have to take care of myself as I have CFS. I need to keep my stress levels to a minimum but it's so difficult at present. I love my partner dearly, he's a wonderful man and would always support and look after him the best I can. We plan to get engaged next year and marry in the future.

Thanks for reading this. L

Lesley, I think you have become a victim of Dr Google's dastardly diagnostic tools! He may just be a restless sleeper?

Constipation and low blood pressure when standing up suddenly are pretty common symptoms but let the doctor check him over if you would feel reassured by this before he goes on his trip.

I think you may be overthinking the situation but if your partner is happy to get checked over then it's the best option for both of you and you will get a professional opinion as opposed to Dr Google's efforts!

I hope it all goes as well as possible on Thursday and I'm sorry you're having a bad time at present. Your partner sounds a wonderful man-you're not going to lose him xx

Thanks for your reply pulisa, I know I'm reading the worse into this but glad we are seeing the Dr soon.

His sleep issue has got worse this year and needs to be addressed. I also need to get back to a good sleep pattern as I'm still teaching part time. This stress is no good for my health either, I'm working on some good strategies for coping with this.

Thank you for your kind thoughts and wishes :bighug1::bighug1: x

See what the doctor has to say and try not to think the worst when all you have at the moment is a diagnosis courtesy of Google...and we all know how reliable that can be!

My OH has severe sleep apnoea which he refuses to address despite being advised to use a CPAP machine so I know all about disturbed nights! Sleep is so important-I do hope you feel better soon xx

I agree with Pul that Dr Google has been stoking the HA fire. I'm sure hubby will get clean bill of health and you can both then chill :shades:

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Originally Posted by KK77

I agree with Pul that Dr Google has been stoking the HA fire. I'm sure hubby will get clean bill of health and you can both then chill :shades:

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Thank you KK77, me too. This sleep condition is quite rare and it can be linked in to neurological issues (further down the track). I'm hoping that there are other benign causes for it.

This is triggering my HA issues, only not mine this time. Still having the anxiety on and off though.

When I had my last counselling session, my councilor urged me to tell my partner how I was feeling about what I'd read and why. I told her I couldn't do this as I didn't want to cause him any worry. She told me to think about it.

Last night I was in a bad way with anxiety but I finally summoned up enough courage to tell my partner why I was so worried. To my amazement he was calm and asked me "if that was all?" He was more concerned about me and my anxiety than himself. I just burst out crying, I just couldn't believe how kind he was and my anxiety just melted away. He said if it happens, it happens but that he was well at present. We are still seeing his Dr on Thursday.

We talked about the future, and about getting older and the fact that we're both probably going to end up with something (which is true) and that we'd look after each other and handle things the best way we could. It was so great to be able to talk about health in a 'normal and healthy' way.

I realised I was projecting my feelings (about health outcomes) onto him, thinking that he wouldn't be able to cope with an unfavourable diagnosis.

This goes back to my childhood where my mother's feelings had to be protected at all costs. I couldn't talk about my fears, (especially health related issues), because she would become so anxious and couldn't cope. She would say she was unwell and was probably dying! So I learned that it wasn't safe to talk about my feelings so I internalised them. This is at the root of my HA anxiety.

Now I have to find ways to unscramble the junk (still in my head) and deal with issues in a healthy way.

ps. My mother is personality/mentally disordered, she's 91, in a rest home and still says she's unwell and probably dying! I've been hearing these same utterances since I was a child, over 60 years ago!

Lesley,

I think you are an intelligent, perceptive person. When I read this it had spiral written all over it as normally you would be ripping worries like this apart for being rare, for Googling without professional insight into the nuances between conditions only doctors know, that you were in tunnel vision mode & catastrophizing.

I wondered whether something stressful had set this off?

Great to hear your partner's response, the exact response of many people without HA worries. I suspect that's partly because he is more objective than you are right now, for whatever reason your anxiety has increased, so isn't seeing it as the obvious outcome your subconscious is trying to make it out to be.

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Originally Posted by MyNameIsTerry

Lesley,

I think you are an intelligent, perceptive person. When I read this it had spiral written all over it as normally you would be ripping worries like this apart for being rare, for Googling without professional insight into the nuances between conditions only doctors know, that you were in tunnel vision mode & catastrophizing.

I wondered whether something stressful had set this off?

Great to hear your partner's response, the exact response of many people without HA worries. I suspect that's partly because he is more objective than you are right now, for whatever reason your anxiety has increased, so isn't seeing it as the obvious outcome your subconscious is trying to make it out to be.

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Hi Terry,

Thanks for your kind words. I've thought all day about what might have set this off. I did read the information (on Google) then put it aside but I just kept thinking more and more about it, I became consumed and my anxiety with it. I was scared about telling my partner my fears in case I frightened him (my perception) and ruined his holiday! I felt I'd lost our emotional connection by not being able to share my feelings and it was tearing me up and increasing my anxiety. I'm not very good at self-soothing, although I'm fine at helping others. I know I'm guilty of taking on too much responsibility for other people and their feelings.

I do have some emotional abandonment issues (although I've not been physically abandoned) relating to my early childhood, so I've got a few things to sort out in counselling.

Thank you for posing the question :hugs:

I'm so glad you were brave enough to have this conversation with your partner. I keep things locked in and it doesn't help. I really hope that the appointment tomorrow helps to rationalise your fears and that your anxiety levels in general lessen as a result of both a professional medical assessment and keeping communication channels open with your partner about your fears. He does sound a wonderfully supportive man but you would be the same to him should he need it..which all sounds like a pretty solid and loving relationship to me!

All the very best for the appointment xx

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Originally Posted by pulisa

I'm so glad you were brave enough to have this conversation with your partner. I keep things locked in and it doesn't help. I really hope that the appointment tomorrow helps to rationalise your fears and that your anxiety levels in general lessen as a result of both a professional medical assessment and keeping communication channels open with your partner about your fears. He does sound a wonderfully supportive man but you would be the same to him should he need it..which all sounds like a pretty solid and loving relationship to me!

All the very best for the appointment xx

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Thank-you Pulisa that means a lot to me. As soon as I told my partner how I felt and why, I started to cry and then the anxiety just melted away. I'm still concerned but I know everything will be fine no matter what transpires in the future. Yes we do have a wonderful relationship and the thought of one day loosing him just sent me into a spiral. We would always look after each other. Now that we've talked about it I feel far more calm and relaxed.

After the Drs appointment I'm having another counselling session, that's 2 in 1 week but I need it .:hugs:

So maybe it's anticipatory anxiety or those deeper feelings becoming stronger the nearer the event? Or maybe a mix? Just like how so many of us spend weeks getting more worried about our perceived big event to often see the bubble burst days before and it reduces? I think mine does this because I'm sitting around unable to do anything about it but when the time comes I can now take action.

I wonder whether your partner's movements in his sleep bothered you until now? I wonder if this is just a way for those deeper issues to find a way out by manifesting as fear about losing him and otherwise you wouldn't have considered any of this if there were no trip?

I seem to recall you talking about ending a marriage that didn't work for years but now you were really happy with your new partner. Maybe there is a little bit of not wanting to lose something great that has only just started and thinking about your time of life and how it can mean more unexpected illness that could cut short the time you are loving, which you mentioned earlier when you said your risk rates go up. But equally there could be many happy years ahead of you both :flowers:

I did wonder whether this was all about the fear of losing him particularly as you had had an unhappy marriage earlier in your life.. Things are really good now so something bad must surely happen now that I am so happy?

I'm certainly no psychologist but it looks that way to me.. Anyway, the most important thing is to see the doctor and go from there..Not long to wait now xx

Hi

My husband of 30 years has the same and I went through the same as you about 5 years ago. He's 61 now. I was also getting clonked regularly. That may be when my HA started actually.....He now takes Clonazepam and is part of a study looking out for early symptoms of Parkinsons. There is a link - but it's not a dead cert he will go onto develop it and if he does, it could be decades away. I'm hanging on to that. Plus I keep on top of research into Parkinsons treatment (read something promising today) . So I know how you feel. But as I say - not ALL of these sleep disorder sufferers go on to develop anything nasty....x

WiseMonkey's partner has no official diagnosis yet though, Nicole. It's so far a diagnosis by Google but her partner has an appointment with his GP on Thursday.

Oh yes for sure. I'm sure they won't be able to diagnose anything other than the sleep disorder as for anything else they'd need a crystal ball.

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Originally Posted by Nicole0134

Hi

My husband of 30 years has the same and I went through the same as you about 5 years ago. He's 61 now. I was also getting clonked regularly. That may be when my HA started actually.....He now takes Clonazepam and is part of a study looking out for early symptoms of Parkinsons. There is a link - but it's not a dead cert he will go onto develop it and if he does, it could be decades away. I'm hanging on to that. Plus I keep on top of research into Parkinsons treatment (read something promising today) . So I know how you feel. But as I say - not ALL of these sleep disorder sufferers go on to develop anything nasty....x

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Hi Nicole,

Thanks for your message, it was interesting to read, it's comforting to know that someone else has or is going through the same issues as me (and my partner). I've read that Clonazepam is used for this and I'm also aware that it's a Valium derivative and that it can be addictive. I have a few questions .. has it helped your husbands sleep pattern and how many years has he had the REM disorder? How was he diagnosed? Your Dr must be very astute to make the connection between the REM sleep disorder and Parkinsons or was he referred to a neurologist? It's reassuring to know that your husband hasn't developed anything yet and may not :)

We went to see my partners Dr today and just talked about his sleep pattern. The Dr didn't mention REM behavioural sleep disorder (and my partner didn't mention it). We talked about this beforehand and he decided not to mention REM sleep disorder unless the Dr did. The Dr talked about night terrors and has prescribed a low dose of Amitriptyline (a tricyclic antidepressant) which can help sleep. So it maybe just night terrors or as I suspect (REM behavioural sleep disorder), either way there's not much else we can do at this point in time. My partner doesn't have any outward signs of anything neurological. I hope we can keep in touch some way as I see you don't accept private messages on this board.

I'm so glad I was finally able to talk to my partner so at least he's aware of the connection between the two issues.

I will ask my partner to return to the Dr's if the medication doesn't help his sleep.

Thank you pulisa and Terry who have help support me through this also xx

ps. You two are so right. I was in a bad marriage for 15 years then had another 15 years (by myself and on and off dating) before I met my partner in 2013. It was a month before my lovely dad passed away. Life is wonderful for us now and of course I wouldn't want to loose this or him. He's so like my dad, I love him to bits xx

Various sleep disorders are linked to neurological conditions....sometimes. If you research enough you will always find a link.

I'm on a low dose of amitriptyline for chronic neuropathic pain and it does help with sleep but to begin with it can be very sedating so my advice to your partner would be to start taking it when he didn't have to get up early the next day.

I can quite understand your fear about losing him especially as life has been far from easy for you. See how the amitriptyline suits him and if things don't improve then you can always go back for a second opinion...but give the amitriptyline a chance? Also the amitrip doesn't help constipation at all but I expect the GP warned him of this xx

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Originally Posted by pulisa

Various sleep disorders are linked to neurological conditions....sometimes. If you research enough you will always find a link.

I'm on a low dose of amitriptyline for chronic neuropathic pain and it does help with sleep but to begin with it can be very sedating so my advice to your partner would be to start taking it when he didn't have to get up early the next day.

I can quite understand your fear about losing him especially as life has been far from easy for you. See how the amitriptyline suits him and if things don't improve then you can always go back for a second opinion...but give the amitriptyline a chance? Also the amitrip doesn't help constipation at all but I expect the GP warned him of this xx

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My partners ami dose is 5 mgs, I've cut the 10mg tablets in half with my pill cutter! He will increase to 10mgs in a weeks time, so he will use them when he goes over seas. Being in single beds, I doubt his elderly mum will notice anything as she's deaf without her hearing aids at night :D

Luckily, my partner only works part time from 12-4 daily so he doesn't have to get up too early.

I asked about constipation and his Dr said not at this low level. I'm on Doxepin 10mgs for my CFS. It is a cousin of Ami and I have no issues with it at all. To be on the safe side, I've soaked some prunes for him to have with his porridge :)

In regards to the REM sleep disorder, it's one of the first reasons mentioned so I didn't have to research much at all. This was quite scary for me.

Hi WiseMonkey
To be honest - it was me that found the Parkinsons link so he probably mentioned it to the GP who then referred him (we had an excellent GP at that time). I think he was prescribed Amitriptyline to start with but then went onto the Clonazepam as I THINK this is a drug used for epilepsy so I assume they are trying to prevent the involuntary movement as well. But that's me trying to remember something I read a long time ago. I also think he will always have to take the Clonazepam, and increase the dose until it stops working. He's not had to increase it much so far but the plan is that when it's not working - he'll go on to melatonin. I try not to worry about it, as I say it's something that could happen in 10 years, 20 years or 30 years - or not at all! And as my husband says - he could get hit by a bus in the meantime!! But ..... anything that brings it to the forefront of my mind then makes me freak out for a day or 2. Then I calm down. Then something else triggers my concern. You know the pattern. Weirdly -the reason I came on the site was due to the symptoms I was having - the usual MS ones linked with anxiety, but also thought maybe I'VE got Parkinsons! I'm a newbie on here so probably haven't got my settings just right. I'll see what I need to do for DM - happy to support each other.

Good that you both can help each other and welcome to the forum, Nicole!

I only mentioned the constipation because I have problems even at a low dose. The GP said I wouldn't but the Consultant said I would! I'm sure the prunes will do the trick!

Even if this turns out to be REM behavioural sleep disorder it's obviously treatable and not having HA allows your partner to take things as they come rather than project too much into an unpredictable future. How I envy people who have this attitude to life-I'm always thinking ahead and planning for the worst and it might never happen! :D

Hi Nicole,
Interesting you mentioned Melatonin as I'd bought some 5-HTP serotonin support for my partner and he's been on that for a week. I think he's been a bit better but it's difficult to tell as I've mainly been sleeping in the other room. I'm a chronic poor sleeper and the CFS doesn't help things either.

It will be interesting to see how he goes with the Ami. You are correct Clonazepam can be used for epilepsy. I know how awful anxiety can be, before I was diagnosed with CFS (Chronic Fatigue Syndrome) I was tested for MS as it can have similar symptoms. That was 25 years ago. I'm very lucky as my CFS is at a low level, it comes and goes in flares but is not a progressive condition

Of course your husband is right, and at our age any number of conditions can crop up, so we have to keep the positive in mind. I know it's hard to do when you're dealing with the unknown. Hope this thread hasn't caused you too much stress :hugs:

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Originally Posted by pulisa

Good that you both can help each other and welcome to the forum, Nicole!

I only mentioned the constipation because I have problems even at a low dose. The GP said I wouldn't but the Consultant said I would! I'm sure the prunes will do the trick!

Even if this turns out to be REM behavioural sleep disorder it's obviously treatable and not having HA allows your partner to take things as they come rather than project too much into an unpredictable future. How I envy people who have this attitude to life-I'm always thinking ahead and planning for the worst and it might never happen! :D

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My partner is a very pragmatic person and objective too. I think many people without HA are better at not looking too far into the future, whereas we are hyper-vigilant types. Planning or expecting the worse is actually a protective strategy and it's what I do also.

Thanks Pulisa for the welcome. You are right about predicting!
Hubbie still has good nights and bad nights - I took to sleeping in the spare room for a while as I too don't sleep well. I still decamp when needed! He seems to go through patches when he's a bit worse and then it calms down again - maybe when there's more stress at work?? I did stop him watching anything violent before bed time in case that effected his dreams - eg Game of Thrones! But he's often just playing football in his sleep or something and I get a kick. I'm also aware if he is a bit unsettled in his sleep and that gives me a warning something's about to kick off - often literally! So at that stage I might nudge him awake and suggest he uses the bathroom or something to "break" the cycle. Not sure if that's the right thing to do.....This HA can be all consuming but luckily he's a really calm "let's not worry about it til it's happened" sort of guy. Sort of balances me a bit. This site so far has helped - nice to know I'm not alone on this strange journey!:)

My husband is very laid back about everything including major issues going on in his life which he is happy to delegate to me! His sleep apnoea is linked to allsorts including Alzheimer's which his Father has..but he prefers to ignore the risk and says he will deal with things if they happen. I know it will be me who has to deal with them however..

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Originally Posted by pulisa

My husband is very laid back about everything including major issues going on in his life which he is happy to delegate to me! His sleep apnoea is linked to allsorts including Alzheimer's which his Father has..but he prefers to ignore the risk and says he will deal with things if they happen. I know it will be me who has to deal with them however..

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Isn't this why they say marriage to a man is good training for motherhood, just with a bigger baby? Your MIL hands over the reigns :biggrin:

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Originally Posted by MyNameIsTerry

Isn't this why they say marriage to a man is good training for motherhood, just with a bigger baby? Your MIL hands over the reigns :biggrin:

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I had a big grin about this also Terry, I guess if the MIL has done a good job then the future partners task will be easier. At least second time around less training is required :D

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Originally Posted by pulisa

My husband is very laid back about everything including major issues going on in his life which he is happy to delegate to me! His sleep apnoea is linked to allsorts including Alzheimer's which his Father has..but he prefers to ignore the risk and says he will deal with things if they happen. I know it will be me who has to deal with them however..

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Hi pulisa,
I guess it gets down to how much control your husband actually has over his future health (what measures can he take)? My partner was just saying this morning, why worry about something that may never happen or that may happen years down the line, it just wastes your quality of life while you are well. He's right of course but this is often so difficult for many of us to do, especially if you suffer from HA.

These neurological issues can't be controlled unlike smoking or excess alcohol consumption. In saying this a lovely Samoan teacher (50) at our school has developed lung cancer and neither she of her family smoke! So rare but sadly it does happen :(

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Originally Posted by Nicole0134

Hubbie still has good nights and bad nights - I took to sleeping in the spare room for a while as I too don't sleep well. I still decamp when needed! He seems to go through patches when he's a bit worse and then it calms down again - maybe when there's more stress at work?? I did stop him watching anything violent before bed time in case that effected his dreams - eg Game of Thrones! But he's often just playing football in his sleep or something and I get a kick. I'm also aware if he is a bit unsettled in his sleep and that gives me a warning something's about to kick off - often literally! So at that stage I might nudge him awake and suggest he uses the bathroom or something to "break" the cycle. Not sure if that's the right thing to do.....This HA can be all consuming but luckily he's a really calm "let's not worry about it til it's happened" sort of guy. Sort of balances me a bit. This site so far has helped - nice to know I'm not alone on this strange journey!:)

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Nicole, this sounds very familiar, you can head one of these 'sleep sessions' off at the pass!!. Quite often if we go away, my partner won't have these sleep issues but that's because he's in a new place therefore having a lighter sleep. Yes their calmness does level things out, I know it makes me feel far less stressed :)

One more tip - we put a pillow between hubbie's side of the bed and the bedside table so that if he does take off, he's protected from any sharp edges. He's only ended up out of bed once but did scrape his thigh down the side of the unit. When he attended the sleep clinic they told him that a woman with the same condition had seriously hurt herself doing the same thing. Oh and long haul flights are interesting if he doses off.....means I can't as I'm keeping an eye on him!

What if he takes off but heading your way, Nicole?

Lesley, my dad has had night terrors for many years. He starts wailing so loud you can hear him downstairs. He says it's always like some shadow is strangling him and he can't get away.

We get trained by our dads too. Mine says always agree you are wrong even when you aren't, life is easier that way :biggrin: It also takes some years to work out that saving all those hammering tasks until the better half's certain time of the month is a really bad idea :winks:

Your dad sounds like a wise man Terry....Yep I've had a few slaps and kicks as I say. We made a joke of it at first - hubbie would get teased, suggesting he was awake when doing it!!
Also slept with a pillow between us at times. The main precaution I take now is that I'm reluctant to sleep facing him as I'd like to hang on to my teeth for as long as possible!

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Originally Posted by Nicole0134

Your dad sounds like a wise man Terry....Yep I've had a few slaps and kicks as I say. We made a joke of it at first - hubbie would get teased, suggesting he was awake when doing it!!
Also slept with a pillow between us at times. The main precaution I take now is that I'm reluctant to sleep facing him as I'd like to hang on to my teeth for as long as possible!

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I understand this Nicole, luckily I've only been clonked a couple of times but now I always face to the outside left (which is my favoured side). I've thought of putting a pillow between us and even getting a wider bed!!

If I know I'm going to be teaching the next day, I sleep in the next room :)

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Originally Posted by WiseMonkey

If I know I'm going to be teaching the next day, I sleep in the next room :)

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I had to teach with a black eye once. Did my street cred no favours :wacko:

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Originally Posted by Nicole0134

Oh and long haul flights are interesting if he doses off.....means I can't as I'm keeping an eye on him!

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My partner and his mother (94 going on 77) are on 2 long haul flights next week. Firstly 11.5 hours (New Zealand to Hong Kong) then 13 hours (HK to Manchester). They've both got sleeping pills to take which may help things.
His mother (who's lovely) is quite capable of giving him a quick elbow if he starts any 'strange sleep stuff' in-flight! :)

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Originally Posted by KK77

I had to teach with a black eye once. Did my street cred no favours :wacko:

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I can just imagine!! Bet the kids had some interesting questions too, wonder if they told their parents (it's amazing what info goes home) :D