After a yoga class I went for lunch with friends. We then went to do a bit of shopping, when my legs got a bit wobbly and my head felt woozy so I went back to the hotel. Had a sleep for an hour and felt terrible when I woke - like my inner systems were on a go slow. We were going for another meal so I dragged myself out, thinking it was going to be a terrible effort.
In the car (passenger) we got stuck in a jam with all that rain at the weekend, I tried to relax but I started to feel even weaker. For the first time I wished I'd brought spare pred for a short journey.
But after about twenty minutes (still horrible driving conditions) I noticed I was feeling better and by the time we got to the restaurant I was absolutely fine - no wobbles or low energy.
So, sorry for long preamble, but my question is - is this how adrenals behave? Were they chugging away producing cortisol during the time I wasn't active, so that about three hours after originally feeling ropey, I was fine again? Interested to hear thoughts.
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Viveka
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Very likely, which is why we always suggest carrying a few Pred with you... you recovered quite easily with rest, , but might have been different in other circumstances.
sounds about right. It might have taken your adrenal axis some time to cotton on to needing to trigger more cortisol but it sounds like it got the message in the end. I have had similar experiences but also ones where I needed to take a rescue mg of Pred because the unplanned stress was too demanding at that time.
Yes, I can identify with your situation. It’s not so good when you never seem to know when it’s likely to happen! Just another of the issues we have to contend with.
I am going to look into that because I do have low blood pressure so it may contribute. But I think as I was stomping round the shops the BP would be fine. Have you been in a position to test it at the time you're experiencing the wobbles?
I do test it daily and I do find it drops right down sometimes, particularly if I am making breakfast I sometimes feel dizzy, I have to sit down in the middle. My diastolic drops below 60. Then other times it is fine.
You don't have an arrythmia do you? That was the first sign of mine - BP dropping like a stone for no apparent reason during a 24 hour BP Holter. They weren't looking at heart rate, just BP, so it wasn't until I linked how I had felt then to the bradys that the penny dropped.
I have had loads of tests, even the paramedics checked heart rate, breathing rate and blood pressure when I fell and hurt my head. They have decided it is just me! I should say I have suffered from low blood pressure since I was a child.
Could I ask you both if you have any thoughts about a friend of mine? Not GCAPMR but was on steroids for several years for RA. She was diagnosed with clogged arteries, and while waiting for heart investigation passed out on a Cornish beach and had to be airlifted out. But the heart investigation found only normal artery problems and the cardiologist discharged her. She is now in no mans land of trying to get GP to refer to right place.
She can get wobbly when getting up when being seated for a while, so there is definitely low blood pressure happening, but last week she nearly passed out again and her eyes went blurry into a rapid movement and her BP went from very low to high. She says she felt much better after that for a few days.
Long shot, but does it ring any bells as to what she could explore?
I'll mention the oximeter. Cardiologist made that diagnosis based on tests, but when they went into the heart they didn't find major problems.
Just remembered she told me when she had her recent incident her systolic went down to 50 and up to 165 in a short period of time. (I thought she'd got the 50 wrong, but just googled it and it is a thing.) This cannot be good. It just points to heart to me ...
Yeah - I agree with piglette. Generally somewhat better but an awful lot of very arrogant male types. And not renowned for engaging with the patient, My original one who made the real diagnosis here was good but distant, not in this hospital either. My annual pacemaker check lady is lovely but tends to let me get on with it because she knows I'm not going to panic - maybe I SHOULD be more forceful!!!
My systolic went down to 54 once diastolic 45. I was in hospital and a doctor just stood there with his eyes popping out as he looked at it on a monitor!
I think on the whole cardiologist are a bit above rheumatologists in general, but not necessarily in particular!
Eeek, so scary Piglette. Hope you're feeling reasonably ok heart-wise now.
Hers went rapidly up again to 165, not just to 'normal' so double trouble I think.
She had a terrible accident 9 years ago when she was run over by a car and then because they didn't realise it was a person they ran back over her - broke pelvis etc and she has PSD. She is wondering if this has something to do with it.
2.5 at the weekend. (Just gone down to 2.25). I think I may have experienced something similar at 3 also. Usually I have a rule to only do one energetic thing at once, and if I feel wobbly I rest for a good long time, but we were away. What are you on?
I have been there too and at the same dose. It took me three attempts to get past this dose and down to 1mg. I also reduced by 0.25mg and used DSNS. At 1.25mg I was ok cortisol wise and had a brilliant basal cortisol test result of 640nmol/L, but then PMR bit me again. I learned to judge if I could tough it out rather than taking more Pred. The first time it happened I wasn't sure what was going on so I went to bed. Then I had a eureka moment and realised from my symptoms that I was AI, so I did boost my Pred and within 2 hours I was fine again.
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