Tingling, light-headed, low BP - questions

[Viveka]

Was feeling very well on 3mg for GCA/PMR... Have been below 5mg pred since last September.

Ten days ago felt suddenly bloated, tingling in L cheek and toes (have experienced these before, usually higher doses pred). Next day occasionally pin-pricks in both legs and arms. Next day tingling and pins were less but felt light headed and brain fog. Took BP. Usually at home it is around 116/66. On this day and next, I took a lot of readings and as well as my usual levels, I had diastolic readings of 60: 57: 58: 59 .

On third day of readings, BP was back to my normal and I felt much better but not 100% right. Went away for the weekend and felt quite energetic apart from brain fog, but also my L ankle swelled up - never done that before.

On Monday I felt wiped out, but my BP was all good, apart from one early morning 110/59.

Today I felt light headed and very bad brain fog and abit wobbly but BP was not too bad at 113/64. I went to look round an art exhibition and after standing for 5 minutes watching a video had to sit down on the floor to stop falling over. I wasn't spinny dizzy, just very light headed. Now back home (and after meal and coffee a couple of hours ago) I am still a bit wobbly and light headed. My BP is 136/75 and pulse is 95 (usually around 68).

Sorry for long premable - here are questions:

Q Is there any potential connection with GCA/PMR or pred? Any other thoughts?

Q I am going to talk to the doc tomorrow and will ask for Hba1c and B12 plus iron in bloods. Should I be asking for anything else?

Many thanks in advance knowledgeable friends!

[PMRpro Ambassador]

I'd be more inclined to suspect your adrenal function having a wobbly! I don't feel it until AFTER a busy day.

[Viveka in reply to PMRpro]

Interesting, I didn't associate it with adrenals. I hope it is that! I was feeling really good till this started. Thanks.

[DorsetLady PMRGCAuk volunteer]

Would agree with PMRpro - sounds adrenal related.. have a look at this -

healthunlocked.com/pmrgcauk...

[Viveka in reply to DorsetLady]

Ah, thanks for this. I see it says low BP/fainting.

Fingers crossed it is naughty adrenals, not something worse.

Perhaps I have overdone it, though I am pretty chilled and it started when nothing was going on. The only stress came days after it started on a 4 hour car journey which my partner wanted to break with a walk round Stone henge at 28 degrees. When I got into the hideous morass of tourists at the entrance and he said the stones were 'over that hill' eg a couple of miles away, I threw a huge and satisfying tantrum. (I knew that was adrenals!) But strangely for the next couple of days I felt good.

Anyway I'll rest more and bother the doc to make sure. 👍

[DorsetLady PMRGCAuk volunteer in reply to Viveka]

Sounds as if you have overdone it (in Adrenals terms anyway if not PMR) … Stonehenge has a lot to answer for..

Showing my age -but as a child could walk round it anytime snd sit on stones -and even 30 years later when hubby was posted at Larkhill - over the hill in opposite direction we used to walk the kids there.

It’s a nightmare nowadays -even just driving past it!

[Viveka in reply to DorsetLady]

Well exactly, when he suggested it, I thought it would be a gentle stroll like Avebury. I went past Stonehenge with my parents as a kid and we stopped to touch the stones, and the last time I went, it was the old centre and a short walk to the stones. Now it is hideous and the exhibition hall is pathetic. English Heritage are ripping off foreign tourists. I had volunteered to go back on Thursday when it was cool and at 10 in the morning, but he has backed off, having had to pick me up off the floor today. 😜

Bit of a drive, but if you ever fancy a day out, try the Newt. It is amazing. All of it is amazing, but the Roman Villa is just incredible. Look and learn Stonehenge!

[PMRpro Ambassador in reply to Viveka]

To be honest, I find most of the UK is a rip off for tourists, foreign or domestic!!! And has been for years ...

[herdysheep in reply to Viveka]

I love 'huge and satisfying tantrum'. 😂 Hope adrenals behave soon, however unrealistic that may sound. We have to hope.

[SnazzyD]

Perhaps ask for your sodium and potassium to be checked.

[Viveka in reply to SnazzyD]

Will do, thank you!

[Mayadill in reply to SnazzyD]

I once passed out. Subsequent investigation showed abnormal ECG and I was asked if I'd ever had a heart attack - no. It was reckoned to be a false positive due to low potassium. Ever since I have taken 400 mg potassium supplement daily Subsequent ECGs all normal and potassium always normal and stable when checked every two months. Electrolytes are not to be messed with.

[Viveka in reply to Mayadill]

Thank you, I'll look into potassium.

[Mayadill in reply to Viveka]

Hi again. I can see in a previous post you mentioned blood tests, but in the context of CRP. What are they checking? (Or don't you get the results?) I'm only confident about my amicable if not actually affectionate relationship with Pred because I get the whole lot every 2 months, full blood count, urea and electrolytes, liver function, CRP., with an occasional HbA1C.

[Viveka in reply to Mayadill]

I had what I think was comprehensive blood check back in November - everything you mentioned above was checked, I think. All normal except for serum triglycerides 3.5 (normal .6 to 2) and red blood cell 5.01 (normal 3.8-4.5) . GP didn't follow up so presume not a problem. I like to check on HBA1C, B12 and cholesterol cause of past issues, but last Nov were ok. I haven't asked for bloods since cause no more flares, except for PMR starting which I was sure wouldn't show in CRP/ESR.

It's all a bit weird cause making a sandwich and watching TV had my pulse in the 90s. Very unlike me. Something is going on. Up to now my surgery has been excellent at helping so fingers crossed. Thanks so much for going into the detail. X

[Mayadill in reply to Viveka]

Thank you! I have absolutely no idea how long all these things take to change but mostly people only hear about electrolytes in the context of replacing them after exercise, so I'd think it'd be quite fast and it wouldn't be anything to do with a flare, so maybe time for more bloods?

[Viveka in reply to Mayadill]

After last night's crazy pulse and BP going up to 145 - unheard of for me, things settled today and I've started to feel well again. Weird. GP has ordered comprehensive blood test and ECG so we'll see. Many thanks.

[tempusfugi in reply to Mayadill]

Lucky you! Think I'll move to wherever you live. Nothing like that around my way. I have to ask (beg?) for blood tests at my surgery😟

[Mayadill in reply to tempusfugi]

Hi there! Uhhh....They are supposed to monitor bloods as per ye Guidelines. in fact my lot are pro-active: they ring me to book it.

[tempusfugi in reply to Mayadill]

Won't ask where you live but I bet it's in a nice town in the UK! I base this on a friend of mine who lives in Marlow and has positive experiences with her surgery. I live in a lovely little village but, unfortunately, Drs don't want to join me...😄

[Mayadill in reply to tempusfugi]

Bracing Brighton in fact! i guess it must be really difficult from all angles in rural areas, fewer resources. So many things. If was something non-critical and I couldn't see GP what I'd call soon enough, there's a walk-in centre by the station, no need to bother A+E. I don't actually need home help right now but the place is brimming with folks offering it, if not the Council then Age UK and some guys called Possability People. i've got my Carelink buzzer and I'm really easy to get to, being smack in the centre.

[tempusfugi in reply to Mayadill]

Sounds great, Mayadill. Btw, is your Carelink buzzer one that you wear round your neck? I have been considering one such. I remember my brother and I doing our best to persuade our Mother to have one but she considered it made her seem old (she was in her eighties by then) and refused! Eventually, we said it gave her more independence and she agreed to have one. It did, almost certainly, save her life on one occasion.

[Mayadill in reply to tempusfugi]

Wonderful! Yes or on your wrist. it's not very decorative, true.

BTW can I just flag up - couple of days ago the Guardian finance probs featured a man having problems with BT on behalf of his mother. He said she needed a landline for her alarm. That is not true. I have never had a landline and the buzzer runs perfectly from my mobile. Test it every month.

[tempusfugi in reply to Mayadill]

Aha! a Guardian reader who lives in Brighton! What bliss😉

[Mayadill in reply to tempusfugi]

Came here in 2016 pre-PMR after my mum died because a lot of family here. Go quite cold when I think I might not have. I love Arundel and that was also an option. If one has to have PMR Brighton is an excellent place to have it in, so lucky, really can't fault any of my care.

[Viveka in reply to tempusfugi]

My surgery is wonderful - by which I mean they do the job they should be doing in the way we would have taken for granted twelve years ago...

[tempusfugi in reply to Viveka]

How superb, Viveka. I'm afraid our surgery is struggling right now and the area I live in has an elderly population (retired) so that doesn't help matters, unfortunately.

[Dcctrains]

I had similar issues the other day and although I thought it was adrenals, my GP said that I should try and drink more water in these temperatures. Sure enough my blood pressure came back to normal and my PMR appeared to be improved

[Viveka in reply to Dcctrains]

Thanks for the information.

[Hirondelle]

I think it is most likely that your adrenals are not working properly. Best to ask for a cortisol test, ( don’t take pred before). I felt as you did and sadly now have adrenal insufficiency but best to know. Good luck

[Viveka in reply to Hirondelle]

Sorry to hear that. I hope it resolves for you in time. I think adrenals were part of what happened to me, but there's other things as well. I was on 3mg for 2 months with no problems at all last November and December. Pretty sure they're working but not up to speed. Best wishes.

[cmToddy]

My first thought was that you have done too much. Try rest for a couple days and see if you feel better.

[Viveka in reply to cmToddy]

I think you are absolutely right and this is a big part of it. Many thanks and best wishes.