I don't know if it's the PMR or the Prednisolone but I have been having long, involved and vivid dreams. Nothing like the dreams I normally have. Anyone else had this happen in the early weeks?
Dreams: I don't know if it's the PMR or the... - PMRGCAuk
Dreams
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PMRproAmbassador
Yes - pred can cause cognitive changes of various sorts and it includes dreams. Usually it is at higher doses but everyone is different so doses like yours can do it too. And ironically, as you get to low doses and adrenal insufficiency becomes a feat, it can lead to dreaming again!
Yes, I have, really interesting dreams. Like films. I look forward to going to bed and I am quite far on in the PMR/GCA process.
• in reply toSheffieldJane
That's it, like films 🙂
Same here, it's like a Hollywood thriller. And then I wake up sweating and scared out of my wits.
Have you been tested for sleep apnea? I used to wake up sweating, my mouth dry and my heart racing amost like a panic attack and it was due to that
I was, but I stayed awake all night, and they took the test kit away. pretty sure that I have it though.
Might be worth another try, I get a much better sleep with my CPAP machine. It was my rheumatologist who suggested it. I remember I'd find myself making a sort of snorting noise as I woke up in the night which must be the apnea. You can't die from sleeep apnea your body will always wake you up, but repeated waking and shallow sleep isn't good for your health long-term
It's really bad for your heart if untreated. I know I have it, I dream about suffocating and then wake up fighting for breath. But that's a separate issue from my nightmares. They are PTSD related and the pred seems to replicate that fight or flight response. It is part of the reason that I had to reduce my dose so fast when I first started taking it.
Aha, that explains why people on high doses of Pred like when first dx with GCA talk about feeling 'wired'. This in an interesting thread, I'd never thought of my dreams before but I can identify with what people have said above.
It was Pred for me
yes, on low dose pred. Mine are horror stories, scarier than anything I’ve seen and so realistic it’s like I’m on drugs. Oh, wait…I am!
• in reply toTwopies
🤣
Me too - I call them my "complicated" dreams - very involved story lines! 🛌
This is really interesting. I thought it was something I ate 🙄
I love this conversation I thought it was just me. Like a movie every night and all the people who have died in my life appear and are talking. The life with pred is certainly strange!
• in reply tobookbear68
It is reassuring to learn that these things are 'normal' due to the effect of the medication. The dreams, the clumsiness, the brain fog, the weepy moments. Without the forum there would not be this reassurance and I badly need it 🫂
Hi Littlejane,
I am sorry to hear that you are experiencing bad dreams.
I can relate to this because, when I started taking Prednisolone 30mg daily, the same happened to me and it can be very upsetting and frightening.
At first, I found it easier to share this with my husband and try to make sense of them. I would suggest that sharing my thoughts helped enormously.
I suppose what I am saying is that to talk to a trusted friend or loved one always helps
I have dreadful nightmares most nights, I actively take part, & sometimes wake thrashing about in the bed, it’s seriously affected my sleep for about 2 years now. Often I’m down to 4 hours only, which makes the days tough. It makes it very hard to get through life, especially coupled with the chronic pain I suffer. But, as a lot of you know, I now have 12 medical issues, & I’m not convinced the pred is causing it, or that it’s linked to PMR. I have discovered, though, that eating cheese or fish in the evenings makes it worse! I have begun to dread going to bed nowadays.
• in reply toPixix
I am so sorry, it must be wretched for you 😞
Pixix• in reply to
You’re right…it is. I do have sleeping tablets to take on an ad hoc basis, but only take them when I’ve had a long run of bad nights. They are habit forming. I can’t imagine waking up in the morning feeling like I’ve had a good night’s sleep…but I used to have no problems at all!
I do not usually dream but have begun to have them nightly-on innocuous topics easily forgotten-on reducing from 2 to 1.5 pred
I have really weird dreams and sometimes wake up in the middle of them, scared and my heart racing x
I also have a recurring dream where I need to phone someone but can’t figure out my mobile phone, it’s really strange and I get stressed and wake up !!
Gosh I sound like a stress head x
ugh! not being able to use my phone is a sore point atm. I have just acquired my first smartarse phone. This morning I tried to use it to pay for parking at the hospital. I failed dismally and it took so long that I missed my appointment, so I had to come back home again. But not before Visa fraud department had been in touch to say that someone else had just used my visa card, so I think I must have landed on a fraudulent site by mistake, instead of the parking app, and they captured my card details. I swear that my difficulty with using technology now is due to the pred, although it might be the PMR. I had to manipulate all kinds of complicated software in my working life, but I just can't cope with it now. It's turned my brains to scrambled egg.
Talking about rogue sites and parking apps… there was an article in our local newspaper a little while ago about that..
Best option is to get on app from the council - or hospital -site before you actually need to use it, then you are more likely to get the legitimate one..
I had come to the same conclusion and planned to try again at home when I feel less pressured Although, I am thinking that maybe I should just stay at home instead. I already use Ringo and that was what I was expecting, but this one was Saba, which I haven't used before. I had an inkling that something was up as they had not asked for my car reg or location, and I had heard that there are rogue sites posing as the legit one, but Visa called me just as I was calling them. I can tell you, they were blooming quick at using my card, but Visa were equally quick, which was reassuring. What I am not sure is if I am at risk of identity theft now, as they also have my name and address and DOB. It wanted me to pay via paypal and I accidentally opened a paypal account and when I tried to log into the paypal account to close it, they had already changed the password, so I also had to get in touch with paypal. I am not amused. My naivety, due to not knowing how to use apps and move around on my phone.
You aren’t alone in that, and these scammers are bl@@dy clever… and when something like that happens, you get slightly panicky and that just makes everything worse. Good to hear Visa on the ball.. and hopefully your identity safe..
Hope so. Just had another look at the app, but my bottle has gone for downloading apps for now. I have no idea how you tell if they are legit or not.
Well if you download from the official App Store you have to hope they are…otherwise we’re all stymied…
I think that's the mistake I may have made, DL. I thought I was getting it from the store.
I know the local council have a link from their “parking page” and it shows the official app logos. Not sure about health authorities, but would hope they have similar (although wouldn’t guarantee it!) . Plus of course there are more and more apps in use depending where you live.
I think that part of the problem atm for me is that I don't feel able to cope with these type of things because of the illness, and the pred compounds it. I'm going though another patch of fatigue and brain fog. Hopefully, it will past in a wee while.
• in reply toGimme
I'm sorry you are going through this, but thanks for sharing. My cognitive function has deteriorated since my diagnosis but it helps to know it is far for the course with this condition.
Understood… certainly doesn’t help.. so another good reason to sort these things out in the peace and quiet of home before the event [if you can that is.. know it’s not always possible]
yes, I can do it at home. Normally I use a PC for the internet, so if I download the app onto the phone, I can check any details I need on the computer.
PayPal were brilliant when it happened to me but the scammers hadn't got any other details. PayPal stopped the payment - and the cheeky blighter actually rang me to try to persuade me he was genuine!!!
Fascinating post and responses! i am sometimes exhausted in the morning and almost still living the dream which usually involves people and situations I recognise but with a twist. I think I have had them throughout my PMR journey whatever the dose.
It is possible that you've always had these dreams, but prior to taking steroids you didn't recall them when you woke up.
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