Dreams or nighmares: Hi all, has anyone suffered a... - PMRGCAuk

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Dreams or nighmares

Strider68 profile image
31 Replies

Hi all, has anyone suffered a similar situation I am going through?

In the last probably 4 weeks I'm having amazing dreams and nightmares, practically every night. The strangest thing (bit hard to explain) they move really fast. When they wake me I don't want to go back to sleep, because they take me back there. Always wake up sweaty. I have not changed my bedtime routine. Only medicine change is back on water tablets as I was having breathing problems.

Two years on pred for GCA, now at 6.5mg

Just wonder if anyone else has had this?

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Strider68 profile image
Strider68
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31 Replies
PMRpro profile image
PMRproAmbassador

Did it start soon after reducing the dose?

Strider68 profile image
Strider68 in reply to PMRpro

I think it did. Took silly advice a while ago and just reduced 1 mg. Now I'm reducing very very slowly.

PMRpro profile image
PMRproAmbassador in reply to Strider68

A few people have complained of nightmares at lower doses of pred and they can be associated with adrenal insufficiency. Have a look at the Related Posts and see what comes up.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Would say it could be adrenal issues, you are in the zone when they start to re-awaken, and it affects people differently.

Strider68 profile image
Strider68

Thank you

Paulagcl profile image
Paulagcl

Yes from time to time but I don't connect that to PMR or drugs. And even if so, they still are reflecting what isgoing on in our psyches in response to the stress of whatever kind.

Zebedee44 profile image
Zebedee44

Hi, yes, I too have been having the craziest, busiest dreams for several weeks and waking up soaking in sweat and still “in” the dream. They have been scarily realistic and fast moving, as you describe.

I am in the below 5mg stage that I have never been in before so I assume they are part of adrenal recovery. I recently introduced a small dose of amitriptyline for my piriformis pain and that seems to have given me better sleep.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Zebedee44

Could be adrenal insufficiency - but also the Amitriptyline, that can cause vivid dreams even though you say it’s helping with sleep. Hope they recede as your body gets used to drug.

Zebedee44 profile image
Zebedee44 in reply to DorsetLady

The small dose of Amitriptyline isn’t working on the pain or helping me sleep and now I think has brought on a UTI so I don’t think I will be continuing with it.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Zebedee44

Sorry to hear that, but this is what you wrote? But if it’s not working, then agree, no point in continuing.

I recently introduced a small dose of amitriptyline for my piriformis pain and that seems to have given me better sleep..

Just for info - I was offered it for pain before my GCA was diagnosed, but pharmacist - who was a friend - warned me against taking it…so I didn’t…

howtotaperdown profile image
howtotaperdown

there is an interesting article in The Times today - 21/05/2024 - about dreams, nightmares and autoimmune diseases... research funded by the Lupus Trust found a link between dreams/nightmares, even disturbed sleep, and the onset of auto immune diseases, ... for the moment the conclusion seems to be to encourage more doctors to ask about nightmares and other unusual or new 'neuropsychiatric symptoms' 'to help detect the disease flares earlier'

Sophiestree profile image
Sophiestree in reply to howtotaperdown

is that the study by the University of Cambridge and King's College London? Very interesting.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Sophiestree

Yes it is -in many papers today -most behind paywalls but not in Irish Times -just ignore adds!

irishnews.com/news/uk/spike...

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

I imagine there has/will be something about it on the Lupus Forum on HU. Melanie does lots of work with them.

PS - I have AdBlocPlus - nary an advert!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Did look there first… nothing as yet.. great minds and all that…

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

I know - but this looks like the media release so I'd hope someone will do something ...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

This from The Lancet [INSPIRE study]

thelancet.com/action/showPd...

Theme 3: disrupted dreaming sleep, nightmares and “daymares”: an example of a prodromal symptom

This from Cambridge Uni -

cam.ac.uk/research/news/i-f...

Flivoless profile image
Flivoless

I started having dreams spasmodically, or maybe it was just remembering them, when I got below about 7mg of Pred and they are still occurring now I'm at 1mg.

darkred profile image
darkred in reply to Flivoless

This sounds like what is happening with me.

Gimme profile image
Gimme

I've had bouts of terrible nightmares throughout my life that are PTSD and stress related, but last few years they had quietened down to very rare. When I was on 15 mg pred, they came back with a vengeance and I was waking up every night feeling terrified, heart racing and sweating and too afraid to go back to sleep. The nightmares felt like just having a PTSD trigger, which, given the nature of pred and my history is hardly surprising. They lessened as the dose reduced, and on 5 mg, it doesn't happen that often, although I am still having quite vivid dreams. I was below 4 mg earlier in the year and I was sleeping like a baby, the dreams were back to normal. It sounds like I am the reverse of you. The pred causes mine and it is dose related, one of the many reasons that I really would like to get off this stuff if I can, but I have to balance it against quality of life.

Pixix profile image
Pixix

Yes. I’ve actually starting ‘acting’ in my nightmares. I find myself waking & doing whatever I was doing in the nightmare, it’s scary sometimes. My nightmares continue if I wake & go back to sleep. I was positive the tv was blaring all night & went downstairs at 3am…silence…but why did t I know it was silent from upstairs, or while I was walking. I remember most in detail in the morning, like the one where big lizards (I like lizards but not like this) burst out through my skin from inside me…like a personal horror movie. I hate going to bed & dread sleeping. I think, however, that mine are a side effect of a different drug, one that I was trying to help something else, as I didn’t suffer like this in four years of PMR. But it’s interesting as I’m on 2mg, so I’m open minded & it could be adrenal related. Waiting to discuss with Dr but I’m thinking of stopping the other drug due to other side effects. I had years on amitryptylline before this started, but now think I should consider that, too. Amitryptylline was prescribed to help my fibromyalgia. It does relax my muscles & help me get to sleep (as you can imagine I’m not too happy when I take them, either)!!

Missus835 profile image
Missus835

Yes. I'm at 11 mg and have weird dreams which I can remember. They do move rapidly and sometimes I go back into the same dream. Mostly about dead people I knew. Ugh. Soaking night sweats. I upped my Pred to 15 mg last night because I'm going thru a lot, plus now my daughter has to have surgery this aft. At the higher dose, no dreams or sweats. Just following the sick days rules for a bit as I have cataract surgery Thursday morning.

Strider68 profile image
Strider68 in reply to Missus835

Thank you and good luck

pats000paints profile image
pats000paints

Hi Strider,

On the teen doses, I had vivid dreams. My dead brother, Danny, was always in them. To be honest, they didn't frighten me and it was lovely to see him again. He was much younger than me and had died of hepatitis c.

SnazzyD profile image
SnazzyD

I remember dreaming a lot on low doses of Pred but can’t remember what they were about. It was odd because I hadn’t dreamed in years.

Strider68 profile image
Strider68 in reply to SnazzyD

Thankbyou

Strider68 profile image
Strider68 in reply to SnazzyD

Thank you

fondofforest profile image
fondofforest

I am currently on 3mg Prednisone tapering from a beginning dose of 15mg at the start of my PMR diagnosis almost 2 years ago.

I definitely have a hard time falling asleep even though my body feels exhausted and when I do I have very vivid dreams often quite frightening that seem very real. Like you mentioned sometimes they even continue if I wake up and eventually fall back asleep. Most nights I can calm myself down just by telling myself this is nothing new but sometimes they are so vivid it takes a while to calm down enough to sleep again. I have always put it down to the medication and hope that it will get better when I get better!

Strider68 profile image
Strider68

Thank you, let's hope they eventually stop.

Sharitone profile image
Sharitone

Yes, nightmares nearly every night, usually wake me up between 4 & 5 am. Ever since starting pred, at high and low doses. The only way I have found to stop slipping back into the bad dream, as you mention, is to force myself to start reading, with a backlit kindle under the duvet, to avoid disturbing OH. Somehow it seems to reset something so there is a chance of going back to sleep. Otherwise I will definitely be awake the rest of the night. I used to think it was the pred, but now I wonder if it is more to do with the inflammation and the disappointment in the life changes PMR and GCA bring, that come to the fore when the conscious mind is not in control.

Strider68 profile image
Strider68

I totally understand and have considered this myself, thanks for your comment.

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