Dizzy/lightheaded

[Bajg]

Is it common and to be expected that I often feel dizzy or lightheaded? The room is not spinning. Kind of in between. Sometimes feel nauseous with it. If so can I do something to relieve it?? Have felt this way often since diagnosed in Feb 2021. Thanks for any ideas!

[HeronNS]

This has come up a couple of times recently, so it seems that it is a symptom that can occur with our condition. I was experiencing this quite often last year when I had to raise my pred dose to deal with a flare, but since I'm back to a dose below 5 mg again it seems to be much better, haven't had an episode for some time. I did not have this problem when I first started pred several years ago, but I was younger then, and probably more in need of the higher dose as I'd been ill and not diagnosed for some time.

It is something which I think you should raise with your doctor.

[PMRpro Ambassador]

Any other symptoms? Like palpitations? Wonder what your BP does during such an episode?

[Bajg in reply to PMRpro]

Diagnosed a year ago at that point the pain was terrible but the prednisone took care of 99% of that. I still have fatigue a lot and the dizziness or lightheadedness or whatever you wanna call it for most of the year I had a lot of pain in my teeth and ears but basically that has gone away. Right now I am on 10 mg prednisone many many days I just feel terrible in general

[PMRpro Ambassador in reply to Bajg]

I think some people do but there other things that run alongside PMR/GCA that contribute. I had paroxysmal atrial fibrillation that was almost certainly caused by the autoimmune part of PMR. When it is playing up I feel quite disgusting and had periods of dizziness due to recurrent episdes of bradycardia - which was sorted with a pacemaker. With the a/f well controlled, I feel a LOT better all the time.

[PMRCanada]

I had this on 3 occasions.

Twice when I was on medication for high blood pressure and was losing weight and getting more active. GP said my high bp could be genetic or due to lifestyle. So when I lost about 15 pounds and still taking full dose of bp medication, I started getting light-headed and having nausea. Sure enough my bp was low so I cut medication in half.

When I lost the next 15 same thing happened. Sure enough bp was low again so I stopped all bp medication and monitored my bp. All ok and never have gone back on bp medication.

I also had similar symptoms when taking magnesium citrate….and the first week on Methotrexate. Both have resolved since I lowered my magnesium intake and type of magnesium.

Hope this helps. Might be worth getting your bp checked, preferably while your feeling this way to see if it’s low. Hope you figure it out.

[Bajg in reply to PMRCanada]

Thank you I will make a point of testing my blood pressure while I am feeling dizzy and see what That shows. Usually whenever I take my blood pressure it is OK but I will check it specifically when feeling dizzy thanks for the suggestion

[Hidden in reply to Bajg]

I also have days when I feel lightheaded....not dizzy. I think it maybe the Pred. I'm currently taking 8mg. Also I have achy jaw when eating, not painful though.....tension maybe !!

[PMRpro Ambassador in reply to Bajg]

I had a 24 hour BP monitor because of dizzy spells - it showed absolutely nothing except for one single measurement that just happened to be taken as I had a hot flush and dizzy spell. My BP had been absolutely fine at all the other checks - but in that one it had plummeted to a very low level. They couldn't identify a cause with the BP monitor so shrugged and moved on. Some time later it was found I was having periods of bradycardia with a pulse of 30 or so and at times my heart would stop beating for 7 seconds just affer a period of tachycardia - plenty of time to feel very peculiar and, in one case, I collapsed, A pacemaker sorted that out! No more episodes.

[Blackcat1M]

I felt like this last year, had my yearly check up and,I was told my cholesterol was high.The doctors wanted me to take statins but, I said I would try diet first.

My diet is good but, I confess to like having a cake now and again stopped that made sure I only had 20 grams of saturated fat a day, and lost weight and my cholesterol is coming down,also the symptoms have stopped.

My blood pressure is the best it’s been for over a year as well.

Have you had your cholesterol checked,is your pb ok, I thought like you it could have been pmr/GCA related but was

Lucky.

I hope you feel better soon

[ubaoz]

I posted a little while back about dizziness and disorientation, similar to what it sounds like you're experiencing, when I was around 8-9mg of pred. It seemed to be getting worse as I tapered, so I wondered if it was adrenal insufficiency kicking in a little earlier than for most people. Like you, my BP seemed to always be fine. Some excellent suggestions and discussion ensued and I decided to treat it as a flare. And also speak to my GP.

The end result is that for me it's most likely stress-related, not adrenals, as upping the dose by 5mg for few days did absolutely nothing. So I've dropped back to 8mg and am OK.

Advice from this wonderful forum and also the chat to my doctor (who thought it was most likely stress-related too) has meant I'm trying to be more accepting of the ongoing "fun and games" in my life and to work around them as best I can. And I'm trying to be kinder to myself as well.

When I do feel lightheaded, I've found doing slow, mindful breathing, consciously relaxing and making sure my posture is good, particularly that my head is held in the right place on my neck (not forward) can be helpful.

And, hooray, the lightheaded feeling is occurring less often as a result. Our minds sure are powerful things…

I'm not saying this is what's happening in your situation, but wonder if you've observed any pattern to the dizziness and if getting anxious about it makes it worse? It certainly did for me, so understanding it a bit better and getting lots of support here has helped me considerably.

As suggested by others, I would definitely get it checked out with your doctor if you're worried and if you have observations of any patterns or related factors to bring to the appointment then that will all help too.

Good luck, hope you feel better soon.

[Viveka]

Hi posted about this recently. I had a bit of this when on higher pred after I was diagnosed last year but it had gone by mid ranges. With a recent flare it came back much worse; some days like walking through a disorientating fog. Then spontaneously goes. No connection with BP. Hoping it will recede as flare dies down. X

[YummyBear]

Good morning,Have you had your bloodwork tested for low blood sugar?Ask doctor or pharmacist to check your ears.

Maybe you are a little dehydrated.

Just suggestions. I've had dizziness over the years and it can dominate your lifestyle, work, social events.

[Bedwell in reply to YummyBear]

Definitely associate dizziness with pred. On 12.5 and finding it impossible to reduce! Muffled ears make it worse of course! Bleary eyed too.. although visit to eye specialist was inconclusive . But I do have permanent lenses?!?!

[Bedwell in reply to Bedwell]

Ps! I do have to remind myself about dehydration quite a lot. ! Could be a factor.

[Sho-Sho]

I felt like that until I had tapered the pred below 10mg - it’s a horrid feeling just dizzy & spaced out, now I am on 5mg & it’s virtually gone, but at the beginning when I was on 60 it was terrible. My head still feels fuzzy but I think I have got used to it but as I now have very low blood pressure I think it’s due to that.

[Karenjaninaz]

I found ginger tea very helpful for dizziness. I had all systems checked out and no cause.

[Hidden]

I suffer with dizzness quite often gp said it's the pred given me vertigo and gave me cyclizine hydrochloride and they work within half hr

[Bajg]

Thank you! I certainly can try that!! Here’s hoping!