I was diagnosed November 2019 and have tapered to 3mgs a day.
I was woken at 3.30 this morning by the badger eating the food we put out for it in the garden. The tin it's under makes a noise. I started to feel a bit strange with the familiar shoulder aches, but then gradually started to tremble uncomfortably. This developed into such violent shaking it woke my wife up.
It got very bad over the next hour or so and we rang 111 for advice. I was also feeling sick, but unable to bring anything up. Offered the choice of an ambulance in 3 hours or ring back from paramedic we chose the latter. Two hours later the medic rang back only for us to be cut off 4 times and they gave up. I was not so bad by this time, but still intend to check it out at the surgery later today.
Has anybody else experienced this? It was very distressing. I hadn't eaten or drunk anything suspect as far as I know. The shaking was ridiculously extreme. Unable to hold a cup of water in two hands...
I've still got some aches from the shaking for more than an hour.
Written by
Utgorn
To view profiles and participate in discussions please or .
It is possible that at 3mg your adrenal glands that are now meant to be working to make up the shortfall of Pred still aren’t up to it. You need cortisol to deal with the physical upset of being woken in the early hours when you are supposed to be in deep sleep, maybe get up to see the badger etc. At that time in the morning you are just past the time in the day (about midnight) when your natural cortisol levels are at their lowest. This should trigger the body to tell your adrenal glands that they need to work in order to increase the cortisol for the highest point in the morning. It is possible that your levels were still pretty low and the disturbance tipped you over the available cortisol. The symptoms are pretty textbook for an adrenal crisis.
It happened to me a few times in different circumstances on low Pred in the past and I would take a couple of mg and lie very still for hours until I felt better. One time with Covid for a week I had to call 999 because I was under too much physical stress and 2mg didn’t do anything quickly enough. IV hydrocortisone was a miracle. I had shaking, nausea, one vomiting, diarrhoea, abdominal cramps, faintness and a feeling that I was in deep deep trouble, not just feeling horrible.
Since you got better over a few hours, it doesn’t sound like an infection. However, it is good that you are being checked out today because it could have been something else like a cardiac incident for example. They come in all shapes and sizes, even the nausea. I’m surprised the paramedic gave up; I presume they had your home details. It can be a tricky business after the event to sort out possible causes but a doctor needs to have a think.
Hi,SnazzyD. Thanks very much for the prompt reply. I was thinking it might be an adrenal crisis type of thing. I'll mention that to the doctor. My wife looked up the symptoms for it while I was shaking, but couldn't find a mention of it being so extreme.To be fair, the ambulance turned up at 8.30 but I was already on the phone to the surgery then and didn't want to divert them from a more pressing emergency.
Thing is, I often wake up around that time of night as aches and bad dreams occur. Never such an extreme reaction though. Thanks again.
Yes - I have had such experiences a few times. No idea what they are due to! A couple of times I have suspected a reaction to something I have eaten but not always. I have tried taking a double dose of antihistamine as I was instructed to do in the past because of a possible food allergy that could be identified - and it worked quite quickly. I take my pred before bed and it releases about 2-3am so my pred level is on the rise at those times too. One or other of those remedies did something!!! My original problem was possibly/probably particular red wines or other high histamine foods in combination. No way of identifying it so it was experimental management - more care in selecting wines did the job!
However, after the time I have been on pred I have no top-up adrenal function and since they are always in the wee small hours - Snazzy's suggestion also fits.
Thanks Pmrpro. I don't think I combined anything unusual, to eat or drink but you never know. I'm tempted to take a bit more pred now, but perhaps better to see the doctor first.Thanks again.
No - I never thought I had either!!!! But the reaction I had, even more extreme than you describe with churning stomach, D&V until my gut was empty, was said by a very experienced immunologist to be typical of a food allergy. Hence - try the antihistamine. I discovered by accident that taking 20mg loratidine as soon as I woke with the signs aborted the effects and was a lot easier than taking a tablet every day. Lidl sells cheap as chips hayfever remedy!!!!
Sounds to me like an extreme version of something I've had to deal with for the last 40 years or more. I call it the shakes, and that's exactly what it is, coupled with an empty feeling and brain fog, along with sudden total weakness in arms and legs.
I've always dealt with it by eating protein as quickly as possible, then lying down for at least half an hour, till it eases up. The protein I've tried over the years has been slices of ham, or chicken, sausages, bacon, cheese, or whatever I can find in the fridge that's protein rich. I also drink about a quarter pint of whole milk to wash it all down with, as that's also got protein in it.
I originally tried just eating anything, such as soup, or a chocolate bar, etc, but quickly found that they didn't work, and it was only protein that made the difference. So now as soon as I feel that emptiness and the beginnings of the weakness in the limbs, it's off to the kitchen ASAP to fill up on meat and/or cheese.
Best of luck, and I hope you find out what caused your episode, so that if it begins again, you'll know what to do before it becomes too extreme.
Thanks, MiniSpec. That sounds very nasty.Eating something would have been the last thing I could have coped with at the time though. The nurse on 111 told me not to drink water even.
Luckily, I had a thorough going over by a young GP yesterday and multiple blood tests this morning. Very impressed with the efficiency and concern showed.
Hope you have some luck with the shakes in future. Thanks again.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Actrema (tocilizumab) and bladder infection
Wondering about PMR diagnosis
Bad week
I feel I need a wheelchair. Am I missing something?
