Dizzyness and Dilemma

[Suttonsea]

Having been on 7mg of Pred since mid November last year,I decided to try to taper at 61/2 from beginning of March. Other than usual morning stiffness,varying degrees of fatigue,I have not been bothered by any significant muscular pain other than “leaden legs”and stiff hands.

However,as my journey with 61/2 Ped progresses, I feel significantly more off colour and have started having dizzy spells, which for someone who has no experience of them is quite worrying .They usually occur after exertion,I’m ok while I’m say walking for excercise but when I stop I’m dizzy for seconds.

Could the fact that I am now in the “Adrenal return zone” be a cause or is my age / cortisol level having an effect on my blood pressure?

Would appreciate if anyone has had similar situation can help with my dilemma,thanks.

[Groggrim]

I just wanted to say 'hello'. I can't advise as I get similar effects myself since tapering under 7mg so I will be interested in the advice that you will receive, and you will get good advice here.

[Suttonsea in reply to Groggrim]

Seems this “zone” is problematic for some! Thanks for responding

[SnazzyD]

I had that when my adrenal function was low. I was fine while being buoyed up by the movement but once I stopped I felt faint. It was worse in a cold wind on face. If it was more of an adrenal crisis my legs would just go moving or not.

[Suttonsea in reply to SnazzyD]

Thanks,was wondering if I needed to up the pred to get back to feeling more “goable”

[SnazzyD in reply to Suttonsea]

That’s the dilemma. The only way of getting the adrenal axis back on line is by suffering low cortisol to try to trigger the feedback process that ends with the adrenal glands working. This also means reducing (slowly!) when you don’t feel great half the time. This is provided your PMR is ok. If you go back up to feel better and go more go juice it just switches off this process that eventually you have to face. I found I had to do less exertion in order to avoid having to increase the Pred because what don’t want is to have an adrenal crisis. Sometimes you do have to dwell at a dose for longer just so the adrenal axis can catch up, especially when you get under 5mg. The problem with above 5mg is that it can be enough to suppress the glands but isn’t enough to do anything much. The only way to get out of this grey area was get to 5mg, but it had to be slow and a bit grim with fatigue. I did 0.5mg over 4-8 weeks and after 5mg 8-14 weeks.

[piglette in reply to Suttonsea]

If you have the PMR pain you should increase for a short time but if it is the side effects of the adrenals complaining you should try and live through it if you can. I did go up 1mg as I was like a zombie, I must admit.

[Suttonsea in reply to piglette]

Zombie is an apt description, never experienced anything like it. I though I could handle stress,having been the Engieering Director for 2 airlines during my aviation career.

[Groggrim in reply to Suttonsea]

I concur with Snazzy. Since reducing to 6.75 I am noticing some of these symptoms but I shall keep plodding onwards and downwards. I've had enough of this game now

[PMRpro Ambassador]

I would think that your adrenal function not having caught up with the reduction in dose is the most likely culprit.

Snazzy has explained why going back to the previous dose is only postponing the evil day. If you want to get to a lower dose of pred you need to persevere and get through this stage but it may mean more lifestyle changes and a slower taper with a lot of patience.

And I do have to say - as we age adrenal function often fades anyway, pred or not. You can't ignore that component I fear.

[Suttonsea in reply to PMRpro]

Many thanks for those wise words,I shall try to be patient as my anxiety level has shot up!

[PMRpro Ambassador in reply to Suttonsea]

Also a sign of adrenal insufficiency!

[Suttonsea in reply to PMRpro]

I did wonder, thanks for echoing my thoughts following all your replies

[Smithie49 in reply to PMRpro]

😞😓😩

[DorsetLady PMRGCAuk volunteer]

How did you try and taper from 7mg to 6.5mg? in one go, or using a slower tapering plan...

Whatever, please employ a slower taper plan from now on... and unless you feel really unwell, try not to increase... as said, that only extends the process..

See this reply to another post I've just done... saves me repeating myself..

healthunlocked.com/pmrgcauk...

[Suttonsea in reply to DorsetLady]

I tapered from 7 to 61/2 from the beginning of March ,1/2 mg down strait away, perhaps should have been 6.75?

[DorsetLady PMRGCAuk volunteer in reply to Suttonsea]

Not necessarily-but using a slower tapering plan (ie. over a few weeks rather than overnight) might have been better.. and certainly will help nudge the adrenals into working again.

[Suttonsea in reply to DorsetLady]

Once again, many thanks toyou and your colleagues for the advice. Well done

[MarksPoint]

Exactly the same for me when I was down to about 2mg and even since coming off altogether I am really having Adrenal fatigue/insufficiency symptoms. Snazzy has been 'talking' me through her experience and I am seeing my endocrinologist in 2 days after having 2 early morning Cortisol blood tests 7 days apart....both of which look pretty good, but something is making me feel lousy...nausea dizziness etc.

Anyway I will let you know what the endo says about all these 'symptoms' ! I think at this point I would say maybe do alternate days at 7 and one at 6 and a half. Good luck.

[Suttonsea in reply to MarksPoint]

That’s interesting, thanks for that, good luck with what’s ahead. Would be interested in the outcome.

[PMRpro Ambassador in reply to MarksPoint]

Just because the basal level looks reasonable doesn't mean there are any reserves if required and you COULD have a bug of some sort - or even something else going on.

[Elispeth]

Hi Suttonsea. I have been experiencing problems reducing from 7mg to 6.5mg too. Bizarrely I am 'stuck' on the dead slow method taking two days lower dose and one day higher dose. If I try three days lower dose and one day higher dose it knocks me for six. I have delayed any further reduction at the moment as it is restricting both my energy and my mobility - I have just moved house and travelled back to the UK to live for the summer months. (Having arrived I am now experiencing the consequences 😱!) Snazzy is very right in what she says, that the only way through this is by persevering with the reduction. It is not easy and it does feel unnatural to have to remain in this state, but having an understanding of what is happening and why this is happening for us is really helpful. Thank you Snazzy you have explained it really well.

[DorsetLady PMRGCAuk volunteer in reply to Elispeth]

Very sensible to put a halt on tapering temporarily… and this is my take on when [or not] to taper as much as how -

healthunlocked.com/pmrgcauk...

[Elispeth in reply to DorsetLady]

That is excellent Dorset Lady. Thank you for signposting me to it. I particularly resonate with that part that says 'whatever suits you best' 😲! I've given up trying to 'plan out' my recovery and now quite enjoy that sitting quietly with a cup of tea - well preferably a glass of wine - whilst others scamper about around me. As Sheffield Jane once said, I also now quite enjoy settling down for a rest for a few hours (whilst my body takes its rest), and watching something good on Netflix or listening to my audible books. Rest and no stress is everything now for a better quality of life. My very best wishes to you 💐 x

[readingbooks in reply to Elispeth]

Round about 7 mg seems to be a watershed dose re adrenals and my excellent rheumatologist kept me on 7 mgs for just over a year and then I continued to reduce using PMRPro's DSNS as I had before. I avoided flares and am now at three quarters mg and, though I have had my share of nasties, this was certainly right for me.

[Elispeth in reply to readingbooks]

Oh that is very interesting coming from a Consultant! Every but of information is helpful. Thank you for sharing. I would love to get down to 1mg. It sounds as if it has really worked well for you.

[Suttonsea in reply to Elispeth]

I agree with you that Snazzy’s explanation seems to fit what is going on. I shall have to stick to the 2Ps, Patience and Perseverance! Thanks

[Elispeth in reply to Suttonsea]

I have learned to 'give in', or as I have re-phrased it, listen to my body since I have had PMR. Patience is indeed a significant factor here now for a better quality of life. I used to be in total control of my life, running a mental health practice with 25 clients. I have studied all my life to help others and there was nothing that I couldn't achieve, with sheer hard work and the determjnation to be of service to the community in general. It was a real learning curve to then be dictated to by my body and not be able to put my mind to getting on top of my condition. This website has been invaluable and I always give thanks to the wonderful people on here who give their time to help others like myself to understand what is going on with their bodies. (You know who you are out there 😊!) Best wishes to you.

[Suttonsea in reply to Elispeth]

Couldn’t agree more

[Heron82 in reply to Elispeth]

So true, I’m a different person than I was 7 yrs ago when I first started with PMR. Back then I had a demanding transatlantic job and worked very long hours. These days I garden, walk the dog and see friends for coffee. I cope well when I listen to my body, but if I have an unanticipated stressful situation, my body has no adrenal reserve to help me cope, I feel overwhelmed and useless. I have to breath deeply to restore calm asap.

Many thanks for the above Q&A, it was really helpful.

[Elispeth in reply to Heron82]

Oh how that statement resonates with me! I am the same if I experience any unexpected stress. A few years ago I nearly lost my mother and the shock sent me rocketing straight back to where I started. It was as if my body went out of control and I just felt breathless and useless! I used to have to close my eyes, disengage and do deep breathing to restore calm into my system.

[howtotaperdown]

i have been getting that dizziness too, almost stops me walking straight, however when I saw my GP as I also had a blocked ear and sinus infection, she said I had to see a neurologist, Saga temporarily cancelled my travel insurance whilst waiting for outcome, which made me go private as no NHS appt possible for a long time. After a big cost for brain MRI etc and private ENT also to deal with the sinus problem, at least my travel insurance is re-instated.

But I take a foldable walking stick with me everywhere, at least if I get this dizzy feeling I am in touch with the ground. I have never fainted or passed out and presume it is the adrenal problem. Only help I have found is to really rest several times a day. I'm very busy with some events coming up which I have organised and I just make sure I take time-out, even if I am not on the brink of collapse!!

I've got down to 7 and had actually reached 6 twice in the last 2 years, and just trying to do the slow taper. I'm trying to tell the difference between real PMR taper and this dizzy/ wobbly et al symptoms so that I dont increase Pred dose unnecessarily not always easy

[Suttonsea in reply to howtotaperdown]

Sounds very familiar. I take a stick for walks as a precaution . The episodes I’ve had come at the end of the walk,not sure why. Perhaps I’m pushing too hard. Need to adjust to a slower regime.

[PMRpro Ambassador in reply to Suttonsea]

Have you checked your heart rate/pulse?

[PMRpro Ambassador in reply to howtotaperdown]

Have you checked your heart rate/pulse? Is the dizziness permanent or is in episodes?

[Suttonsea in reply to PMRpro]

Just episodes, generally my pulse rate ,at rest, is between 65 and 75. However, I do have occasions when it goes bit “wappy”

Used to episodes of SVT until my Cardio put me on Half Securon(Verapimil)

[PMRpro Ambassador in reply to Suttonsea]

Things do change - I was fine on medication for 10 years. Until I wasn't! Now I don't have to argue about what might have been going on - thank you Pacemaker ...

[Suttonsea in reply to PMRpro]

Sounds like “Peace of mind Pacemaker “ one never knows??

[Oh-my]

I too had dizzy spells around the 6.5mg to 6mg drops. Especially in the first few hours before Pred really kicked in. I would slow down on whatever I was doing and take it easier. I had a lot of fatigue then too.

As I’ve had low blood pressure most of my life I’ve been used to the odd dizzy spell now and again so I kind of ignored them or just accepted them as me to be honest. Now I’m lower than 6 they have stopped for the moment but I’m aware they might return. I’m not so tired either. Sometimes it’s hard to know if fighting a virus also has a part to play (I look after my granddaughter who seems to have a permanent green nose.)

[howtotaperdown]

yes I find that after a walk it is worse, I walked to the National Gallery the other day only to feel really dizzy when I got into the exhibition ! walking sticked it round but still felt clammy, out of it and not totally enjoying the paintings, yet on the walk I was fine and focused, that is why I have really decided to sit down after effort even if I dont feel like !t

[Suttonsea in reply to howtotaperdown]

Sounds like a good plan 👍

[WhatNoCarbs]

Be a bit careful with dizziness. I completely fainted and found out it was iron deficiency!

[PMRpro Ambassador in reply to WhatNoCarbs]

In my case it was bradycardia episodes where my pulse was having pauses of up to 7 seconds. Being given a pacemaker sorted that nicely ...

[Mystik]

I suffer from dizzy ness all the time vertigo I done exercises meds u name I done i tired it it’s worrying

[Meggs01]

I spent all of last summer on 3mg to give me some quality of life as it had all settled down. I then used the 5 week slow taper to 2 1/2 mg and then down to 2mg all relatively easy. Early February I started the same taper to 1 1/2 and now after 8 weeks I am feeling really off. It shows each taper can be very different!

[DorsetLady PMRGCAuk volunteer in reply to Meggs01]

Yes but as you get lower the percentage you drop gets higher.. that makes a difference. Reducing 0.5mg from 2.5mg to 2mg is 20% whereas same amount from 2mg to 1.5mg is 33%.

[Pippah45]

I too had difficulty at 7 and the only way I could get down was to start with a reduction to 6.75. Going the slow reduction protocol. I think I was stuck at 7 with failures for over a year but now on 2 by going down in quarters.

[Suttonsea in reply to Pippah45]

Comforting to know others have similar issues. Seems you have managed the taper successfully. Well done and thanks for your reply

[Chiavenna]

I’m feeling the same tapering at 7.5 mg