Dizziness

[Maur1]

I have had GCA sine March 2016 and have had 3 flares. Currently on 10mg Prednisolone. I have been experiencing dizziness for the past 3 weeks. It happens when I turn round in bed, when sitting up and getting out of bed or after lying down and sometimes during the day when I turn my head slightly. Has anyone else had this problem? Had a Dexa scan last week and the dizziness was awful when I started to get up after the scan.

[SheffieldJane]

Dizziness is in the listed side effects of Pred. The doctor may be able to give you something to help the symptom. I remember having a sort of fizzy sensation in my head and I hated being bounced around even slightly when my OH got into bed for instance. It has passed now I am down to 5 mgs after 3+ years. We are not immune to other conditions so your doctor should investigate - it sounds horrible.

[SnazzyD]

Hello, from the sound of the symptoms and the aggravating factors, it sounds like you some sort of inner ear, vestibular, disturbance. This means your balance is out of whack so movement of the head means your inner compasses go wild and it can feel like a sudden lurch because the room moved or you’re on a merry go round that you can’t get off. The cause needs to be sought, not least because there are some pretty good meds to help the symptoms.

[DorsetLady PMRGCAuk volunteer]

Get checked for labyrinthitis! Not pleasant so hope not.

[PMRpro Ambassador]

Have you any GCA-type symptoms besides? Ears can also be affected by GCA.

Have you been to the doctor? It could be something called benign paroxysmal positional vertigo (BPPV) which can be treated by a series of movements called the Epley manoeuvre or there are other things that cause vertigo that can be treated medically.

[Oumaof2 in reply to PMRpro]

I've had The Epley manoeuvre.... It worked after 2 treatments...

[piglette]

My brother had similar problems and he does not have PMR or GCA. PMRPro has mentioned what my brother had Benign paroxysmal positional vertigo (BPPV). His GP did not want to know. He suffered for ages and happened to just mention it to me. I had just seen GPs Behind closed doors where someone had the same problem. My brother went privately to a cranial physiotherapist. He said it was an absolute miracle which happened in minutes and was the best thirty pounds he had ever spent. I am not saying that is what you have but it does sound similar.

[Snowy12]

Hi, before GCA I had a number of bouts of vertigo/labrythitis it definitely sounds like this to me.

I went through all the tests and they finally through a process of illumination diagnosed cervical vertigo.

I had a couple of operations to fuse my sacroiliac (pelvic) joints following a fall when steps collapsed in work a few years earlier and they said this had changed my posture.

I was given exercises to follow which I need to repeat if the dizziness kicks in and it really works. It’s a horrible debilitating feeling I hope you get some relief soon.

[Sho-Sho]

I was diagnosed with GCA nearly three years ago starting with 60mg of pred - I am now at 7mg and, if I am honest, I have felt dizzy every single day. It was really bad until I got to 15mg, then eased off a bit, andfor the last year when I have been stuck at 7mg it has got worse again. The rheumi I go has always felt it was due to the pred and now thinks it's more than likely being caused by the adrenal glands which are not functioning yet.

Definitely worth checking with Doctor re blood pressure etc.

Good luck

[1602]

Hi there horrible feelings you going through. Your rheumy may be right. After passing out in church and numerous checks in hospital I was told I had low cortisol levels - not everyone's adrenal glands function waits until you are down to 7.5/5mg pred to need to kick in. Can't help much as I'm awaiting endocrinology appointment. Please take care. Cath xx

[walker5]

Sounds like vertigo to me, too.

I had the Epley maneuver done also for BPPV. Helped tremendously. Best to get this done professionally, but some people do their own therapy.

Google “Epley maneuver” on YouTube and see how it’s done.

The hard part was when I was told to keep my head neutral for 48 hours after it was done, to allow the crystals in inner ear to gel in place. Hard to sleep upright and not let your head turn to side. I believe it’s only 24 hours now.

I’ve learned I shouldn’t tilt my head up (just look up with your eyes), and avoid turning over to left side when in bed or the spinning will start. Good luck!

[JJackdaw]

I weaned myself off prednisilone as not only did it make me fat but it did me more harm than good. I just felt so I’ll all the time, like I was being crushed, couldn’t breathe properly and sweating like a pig with out any exertion. When I was totally free from the drug I did feel better, not that pmr improved but at at least I never had the extra pain from the steroids.

And yes, I had all the dizziness on movement as well but not after I stopped the steroids. We’re all different I know but I can only say how I felt. There are some very informed people on this site so I’m someone will get back to you with help to cope with your symptoms. Hope your health improves soon. 🙂

[Blearyeyed]

You have great advice about dizziness so far and asking the GP to check for Vertigo and Labrynthitis is a must.

Noting your symptoms , which are similar to mine in terms of changing position there is another , often suffered , but often neglected , condition that comes with various illnesses that is worth asking them to check .

This is POTS , or Postural Orthostatic Tachycardia Syndrome.

This is a condition when your heart rate increases/ decreases by 30 beats a minute or more within a minute of standing or lying down , not necessarily with a change in blood pressure.

It can cause dizziness , vertigo , blurred vision , nausea and sometimes loss of balance or fainting on changing positions quickly , or , when you have been in one place for a long time.

Getting your GP to do a "standing test" , noting your heart rate changes , not just your blood pressure, is important to getting a diagnosis and it can be controlled for most by non medical techniques.

The simplest , quickest standing test they can do in a surgery involves you lying flat for a few minutes before they take your readings.

Then you stand up , they test again after 1 minute , and then each two minutes up to 10 minutes , but 5 minutes can do for them to then investigate further.

If your heart rate has increased by 30+ , without any other BP changes that would show hyper or hypo tension it is likely to be POTS.

The recommendations worth trying , even if they get confused working out what POTS is ( and from experience I know they do !! ) is the following.

Sleep with your head and feet raised.

Have a rapid drink of water before moving , especially after sleep , then get up slowly and have another drink before walking away.

From lying you should sit up slightly , drink , move to sitting at the side of the bed , drink , stand up , wait and drink , then go on your way.

Don't get up quickly to answer the phone or door , take your time .

Drink mineral water rather than tap water to stop you flushing salts from your system you need to reduce POTS.

Don't twist your head around or up and down quickly , learn to manage your movement in a slower , calmer way.

Gently exercise each day in activities that use less positional movements like walking , swimming , aqua cise or Tai Chi. POTS is often caused , or gets worse, because of reduced activity , which is probably why many people suffer with this sort of dizziness and vertigo when suffering from chronic conditions because of reduced activity.

Keep well hydrated during and after exercise and reduce your pace and movement slowly, never just stop. Musical Chairs and Musical Statues are not good party games for people with POTS or Movement Dizziness.

Increase the minerals in your diet with a good supplement , including Potassium , Magnesium , Zinc and Iodine.

Don't get too hot or too cold. Make showers and baths shorter. Have a chair to rest on when getting out.

Eat smaller lighter meals as digestion of heavy meals can add to dizziness on moving after eating.

Hope this helps and things go well at the GP and let us know how you get on.

Take care , Bee x