Could this be PMR or Steroid side effect ?

[NursePeggy]

I have been on Pred for 4 years and am reducing from 7 to 6.75 mg again. I had a very strenuous and stressful day on Saturday, going to a funeral and driving home took nearly 2 hours. The longest journey I have done for 3 years is about 15/20 minutes. When I got home I was so tired I needed a rest and I went to sleep in bed for 2 hours. When I woke up I couldnt move my arms and legs, but had no pain. It was probably only seconds, but it seemed more like minutes. Then I managed to sit up on the side of the bed but felt very weak. I then had a hot flush and racing heartbeat. (I think that was Histaminosis which I have just been diagnosed with)

After about half an hour I felt fine and it hasnt happened again. I wondered if this being unable to move has happened to anyone else and if it could be due to either PMR or Pred? It was very frightening. I wondered if my muscles were rebelling at working so hard all day ? I would welcome any thoughts on this.

[SheffieldJane]

Poor you that sounds like a stressful period of time , culminating in not being able to move your arms and legs and then experiencing weakness. I think the situation is peculiar enough to warrant a doctor consultation.

I had to look Histaminosis up, never having heard of it. It must have been very difficult to get a definitive diagnosis. The symptoms are so general and part of many conditions, particularly autoimmune conditions. A lot of us will recognise the symptoms. I have been putting them down to Prednisalone side effects. . I hope that you are feeling rested and stronger now.

[PMRpro Ambassador]

How about this?

nhs.uk/conditions/sleep-par...

[NursePeggy in reply to PMRpro]

Thank you for this. I had never heard of it before. It does sound very much like what happened to me. My eyes were open and I just couldnt move. I have been worrying that it might happen again, but I wont worry so much now. Do you know anyone else who has experienced it ?

[HeronNS in reply to NursePeggy]

If it's sleep paralysis I experienced it commonly as a child and into adulthood, even occasionally up to just a few years ago. It's when your muscles are relaxed as they would be in the REM stage of sleep but you are nearly conscious and aware of the world around you. It can be terrifying if there's still a dream going on - probably the cause of many a child's nightmare!

[NursePeggy in reply to HeronNS]

Thanks Heron. I thought I was totally awake as I seemed to be able to move my eyes ! I think so anyway. It was a very weird sensation.

If it happens again hopefully I wont be so scared !

[HeronNS in reply to NursePeggy]

My first memory of this happening was when I was about four or five years old. I had a toothache. We were in Africa and for a few nights we'd heard wildcats yowling outside. So there I am lying in bed in pitch darkness, certain my eyes are open, with my dream (which was of being kidnapped, bound in a carpet, therefore unable to move, and being dragged behind a camel through a desert) still going on but aware that I'm in darkness with a terrible toothache and wildcats making a noise outside, and calling for my aunt to come and save me. That night no one heard me and it was suggested that I had only dreamed that I was calling out.

As a side note when in Egypt a few years ago we visited the Valley of the Kings and it struck me as we approached that the landscape was exactly the landscape of my dream.

[EdithWales in reply to NursePeggy]

Hi NursePeggy

It was well known when I was training and referred to as Night Nurses paralysis Falling asleep when we were on duty then trying to wake up when Night Sister was coming. Frightening but very common

🥂

[NursePeggy in reply to EdithWales]

Thanks Edithwales. I hope you were not caught out by the Night Sister ! I am seeing my Functional GP on Thursday, so will be interested to hear why she thinks it happened to me.

[EdithWales in reply to NursePeggy]

It was always just in time but then it was nearly 50 years ago, I suspect they don’t even sit down these days 🥂

[patriciawhite in reply to PMRpro]

Good explanations .

[patriciawhite in reply to patriciawhite]

Ii had that from child hood to age 43 when it just stopped my mother was mentally ill and also very attached to the spiritualist church so I know why now , but it,s awful isn't it .I understand now it was stress related for me .I was taught differently ,It may be the stress of the illness ,It brings so many changes .

[NursePeggy in reply to patriciawhite]

I am pretty stressed at the moment, so that would fit in as well. Trying to learn how to meditate !

[patriciawhite in reply to NursePeggy]

Try to relax and read or something before sleep maybe ,If you are going to bed uptight with frustration at this B awful nuisance of a complaint .Its tense .Maybe your doctor would suggest a very mild sedative . If you can convince yourself that is working ? I found to avoid that happening I was delaying going to bed . All that achieved was loss of sleep and more stress lol .

[Daisychain12 in reply to patriciawhite]

Patricia I know mine is stress. I can list the lead up events in the preceding months. Some of us just get hit one time too many. Sending you a lot of empathy and a hug darling. Xxx

[patriciawhite in reply to Daisychain12]

Oh thanks

[Jemsea]

I had this happen once in my early 20's. Was on holiday in Spain at the time. I was awake, but couldn't open my eyes, or move my body. I remember struggling to open my eyes and move my feet. Thought I'd had a stroke. Very frightening!

[NursePeggy in reply to Jemsea]

My eyes were open, I just couldnt move everything else. It was very frightening. I also wondered if it was a stroke at first.

[Omanain]

Something similar happened to me on two occasions shortly after my husband died. I was lying on my back on my bed resting in the afternoon. A light breeze started blowing on my face and moving my hair. I thought I must have left the window open,but the breeze became a strong wind and the bed started to rock violently. I was completely unable to move and very scared. I kept saying to myself 'just open your eyes and it will be Ok', but they wouldn't open! The whole thing probably lasted no more than a few seconds but it was a very frightening experience. I put it down to the stress of losing my husband. This was 16 years ago, reading your post reminded me about it. A real psychosomatic experience!!

[NurseAlly]

Hi NursePeggy,

I am a nurse as well, but in the United States. I am so glad you are still on this site so I can write to you. I found a posting of yours from 4 years ago saying you woke up several times a night with palpitations. I haven't been able to find anyone else on the web that has woken up several times a night due to arrhythmias, other than you. I wake up every 1/2 hour to every hour with SVT. I am so tired. I cannot get quality sleep. I am always dreaming when this happens. Do you still have this problem? If not, what worked to stop it? Thanks.

Allyson

[NursePeggy in reply to NurseAlly]

Hello Allyson. I have only just seen your post of six months ago. A very kind doctor gave me Zopiclone to help me sleep. I was able to sleep for up to 5 hours and a few times 6 hours. It still works and I take the lowest dose nearly every night. So I dont have many episodes of SVT or racing heartbeat now thank goodness. Have you managed to find a solution?

Best wishes

[NurseAlly]

Hi Peggy,

That's great you found a medication that has been mostly effective for you! I haven't found a solution yet. Do you ever have an episode where you heart rate keeps fluctuating? I will wake up with a fast HR when I have been dreaming and sometimes it will go away immediately, but other times it doesn't. It will keep climbing, but then go down for a few seconds, then back up for a few seconds and sometimes will do this several times in a row before it will finally go back to normal and stay. This happened recently. It used to be that if I sat up it would really speed up and I'd hear the heart beat in my ears and feel it pounding in my chest. I then tried just laying there and not sitting up and it would go away by itself, but unfortunately that didn't happen the last time. It didn't go away even though I stayed lying down. I had to take a beta blocker to get it to stop. I have NO IDEA what is going on. I spoke with another cardiologist and she thought it was hormonal. I am peri-menopausal. So, they feel yours is SVT? I hope you are still doing well. Thank you.

Allyson

[PMRpro Ambassador in reply to NurseAlly]

The underlying autoimmune disorder that gives rise to the symptoms we call PMR and GCA can also damage the electrical cells in the heart that govern heartrate. I developed similar episodes soon after the other symptoms of PMR first appeared but it wasn't until many years later it was identified as atrial fibrillation (by omission after I had a severe drug reaction causing a/f and after it was treated, the episodes improved and I recognised what they were). There are articles in the medical literature - and there are a lot of patients on the forums with similar histories.

[NurseAlly in reply to PMRpro]

PMRPro, I am sorry but I forgot to let you know that I don’t have the autoimmune disorder that people on this forum have. I first replied to someone on here a while ago because I FINALLY heard of someone that wakes up several times at night with a fast heart rate. I am desperate to try and find out what is causing this. The initial person I talked to on here, I let her know I don’t have PMR and GCA.

[PMRpro Ambassador in reply to NurseAlly]

It is helpful when people fill in their profiles on HU - it lets people look them up and answer more appropriately.

[NursePeggy in reply to NurseAlly]

Hi NurseAlly. It doesnt happen to me much any more, but every now and again. I take some ice cubes up to bed in a thermos and if I get a fast heartbeat I rub it gently over my face and neck and this usually brings my heartrate back to normal after a few minutes. This was a tip given to me by someone when I was having an ultrasound of my heart. I mentioned this to my cardiologist who said it was fine to do this.

I forgot to say that I have had a heartbeat that speeds up and then down, I found it very scary. I like to be in control and it takes away ones control.

I was diagnosed with SVT about eighteen years ago, but it has only been happening during the night since I started taking steroids for my PMR.

If I dont take my Zopiclone I still wake up several times a night with a fast heartbeat ! I am hoping that when (if) I manage to get off the steroids that the SVT at night will stop.

I hope this is helpful to you, do let me know is the 'ice' works for you too !

Good luck !

[NurseAlly]

Thanks for the information Peggy. I appreciate it. That's good that Zopiclone is helping you, for the most part, but too bad you have to take a medication to prevent yourself from waking up with tachycardia. It is frustrating when doctors aren't really sure what is causing it. One doctor I spoke with said she felt it was hormones, but I don't know if that's what is causing it or not. I am not taking prednisone so our situations are not completely the same. I will see how the ice works for me. Thanks!

Allyson