Positional Vertigo: I am currently doing a very... - PMRGCAuk

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Positional Vertigo

SheffieldJane profile image
109 Replies

I am currently doing a very slow taper from 5 mgs of Prednisalone, none of my other meds have changed. For the last few nights I have experienced awful swimmy, dizziness when I lay my head on the pillow at night. I do have chronic catarrh a stiff neck and feel viral. Yesterday I had a very unusual, horrible headache and vomited. I feel weary at the thought of trying to access my GP with yet another odd thing. Does this sound GCA related? Has anyone experienced these symptoms?

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SheffieldJane profile image
SheffieldJane
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109 Replies
Bluey-1 profile image
Bluey-1

It does sound viral Jane. Have you tried paracetamol? Hot lemon & honey drinks to stay hydrated? It’s always a pain when these things happen over the Bank Holiday. I had a panic over deafness in one ear, feeling lightheaded and drained last week. Went to walk in centre locally (as couldn’t get a dr/nurse appointment) to be diagnosed with impacted wax. Ear drops bought and appointment made for syringing next week. Do you have an NHS walk in centre locally if things get worse?

powerwalk profile image
powerwalk

"Another odd thing"!!! I get that. Last week i had the worst bout of vertigo i literally could not stand straight, i got so scared i had to make sure my husband was there to hold on to when i tried to move. I put it down to having just gotten injections in my back, so maybe upsetting adrenals or something. It does seem relentless these things going on. The vomiting and headache you had is worrisome, though hopefully it is a virus. Obviously do make sure to get checked out Jane if you are in doubt. I know how you feel trying to keep up with things. X

Oboes22 profile image
Oboes22

Hi, I often get vertigo which is awful and I have a prescription medication Betahistine which works fine. Perhaps you could ask your GP if it's appropriate to prescribe this for you. Take Care

Pixix profile image
Pixix in reply to Oboes22

Do you take that continuously M whether you are having a kboit’ or not, please? My vertigo episodes are getting more frequent as our falls connected with it, & I’m looking for prevention now, rather than cure! I only have prochlorperazine, an anti sickness, which I need, Dr said, to carry everywhere as it needs taking as soon as it starts. Thanks, S x

Oboes22 profile image
Oboes22 in reply to Pixix

Hi Pixix, I have Betahistine Dihydrochloride 16mg tablets prescribed by my GP which I could take all the time, but I only take them when I feel vertigo starting and then I take them for a few days. They were first prescribed when I was in Australia a few years ago when I had a really bad attack with sickness and I was concerned about flying home. I now always have them with me. I also have Prochlorerazine for anti sickness but find I don't need to take them as the Bethahistine works fine. I only take the anti-sickness tabs when I am going sailing and the weather is a bit rough. Perhaps discuss with your GP. Take Care.

Pixix profile image
Pixix in reply to Oboes22

I’m going to see him on Monday, so just wanted to know how the betahistine works! Thanks. Yes, my worst fear, if I had a bad attack when due to drive home from holiday, or fly…well, I just wouldn’t be able to…if I move an inch I’m sick when it’s really bad!! I find them prochlorperazine makes me very drousy sometimes, but no effect at other times! S x

SheffieldJane profile image
SheffieldJane in reply to Pixix

The NHS website has a page on Betahistine. X

Pixix profile image
Pixix in reply to SheffieldJane

Thanks, didn’t have time today to look, but will now, very helpful! S x

Oboes22 profile image
Oboes22 in reply to Pixix

Hi Pixie, hope all goes well on Monday with your GP. I know how you feel about moving and being sick - I've had to crawl on my hands and knees before now to get to the bathroom. Le me know how you get on and take care. Pam

Pixix profile image
Pixix in reply to Oboes22

Thanks! My Mum & my Aunt (sisters) both suffered, but I had my first bout age 65….thought I’d escaped it! S xx

Oboes22 profile image
Oboes22 in reply to Pixix

oh dear! My mum had an autoimmune disease Lupus which is far worse than PMR and I too thought I’d got away with any apparent hereditary disease. We will survive. Pam

Pixix profile image
Pixix in reply to Oboes22

Hard luck…my Mum had fibromyalgia & so do I!! But she was a lovely Mum! S x

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Sounds more viral /catarrh related to me.. although I did have labyrinthitis many moons ago way before GCA. Not nice

There are exercises online for vertigo -and maybe get some anti sickness tablets from chemist. 🌸

SheffieldJane profile image
SheffieldJane

Thank you for your advice, and for sharing your experiences. I am going to give my GPs another chance. Nothing feels benign these days. I saw the exercise on-line that involved lying on your back with your head hanging over a pillow with your face turned to one side. Someone suggested antihistamines too. It was the headache that spooked me.

Kendrew profile image
Kendrew in reply to SheffieldJane

Hi there,

It could well be just a virus, but interestingly, I have a friend who has just been diagnosed with vertigo after a sudden onset of dizziness, headaches, some vomiting and balance issues a few months ago.

She had many different tests ranging from blood tests to brain scans...all to eliminate other potential conditions, and everything was clear, so a reliable diagnosis of vertigo was the conclusion of all the 'exploratory' work.

The strange exercise you described actually worked for her, but she needed her GP to just help her at first to 'tweak' the technique.

I hope you get sorted soon.

SheffieldJane profile image
SheffieldJane in reply to Kendrew

Thanks for this. X

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to SheffieldJane

I tried that fairly recently - and it worked.. although first few times you do feel at bit yucky...

I don't have an issue at the moment, and tbh think it was a reaction to a statin GP wanted me on - which I "politely" declined....

SheffieldJane profile image
SheffieldJane in reply to DorsetLady

Yes, I wondered about my Doxozosin but then the crushing headache. Thanks for your time, as always. X

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to SheffieldJane

Yes...headaches are always a worry...

Knit11 profile image
Knit11 in reply to SheffieldJane

I get vertigo and I do the exercise described above when it happens. It helps; the attacks disappear for a long time. I do it on empty stomach because I read that it can cause nausea, though I never experinced it.

Katiecatweazel profile image
Katiecatweazel in reply to SheffieldJane

Hello Jane, I’m sending you my very best wishes for an improvement in your condition soon. It has provoked a very interesting series of posts along the way. All the best.

SheffieldJane profile image
SheffieldJane in reply to Katiecatweazel

Yes I thought it turned into a helpful thread. It seems to be quite common.

Merryfield profile image
Merryfield in reply to SheffieldJane

Dear Sheff. My husband and I both get vertigo periodically. An exercise is to sit on edge of bed and quickly bring your upper body backwards to “bang” your head on the bed. Do it two or three times. Not kidding. It settles the crystals that are swimming around in your middle ear. Be well goodness knows you already have plenty to deal with.

Dochaz profile image
Dochaz

Could the dizziness be anything to do with adrenals wobbling?

SheffieldJane profile image
SheffieldJane in reply to Dochaz

I think it could. I am seeing the Endocrine unit for a morning cortisol test. I will mention the episode thank you.

yogabonnie profile image
yogabonnie

I have used the Epley maneuver often. If you look on YOUTUBE it will show a PT person doing it to another person, however I do it myself and it works. the vomitting could be easily from the vertigo you are feeling. It is caused by Crystals in the ear ..which get loose and wander off but the maneuver gets them back. It is quite amazing considering the first time I woke up and turned over and the room was spinning and I fell right down. It could also account for the headache. That being said I would still call the doctor. here.. you dont have to hang your head off the bed. youtube.com/watch?v=9SLm76j...

strawclutching profile image
strawclutching in reply to yogabonnie

I've used this too with hit and miss success. Sometimes have to repeat a few times. My cousin goes to the 'fally down' clinic as she calls it at our local hospital (NHS)where they do this manoeuvre for patients who can't do it themselves, but like everything the waiting list for appointments gets longer.

SheffieldJane profile image
SheffieldJane in reply to strawclutching

I love the idea of a fally down clinic. 😄

strawclutching profile image
strawclutching in reply to SheffieldJane

😀Yes, my cousin's a bit nuts like me - she's ninety and amazing, but sad at the minute because her 93 year old boyfriend of 14 years has just dumped her. Honestly, these oldies have a way more exciting life than me!😂

yogabonnie profile image
yogabonnie

Good luck !! I will be thinking of you. hope it just GOES AWAY!!!! I pushed send too soon.

SheffieldJane profile image
SheffieldJane in reply to yogabonnie

Many! Many! Thanks 🙏 much for the help. I will be doing this. Xx

Blossom20 profile image
Blossom20

Poor you....sounds like a virus, inner ear thing. But the crushing headache is worrying. Definitely get it looked at.Best of luck, and let us know x

Grammy80 profile image
Grammy80

So sorry, Jane. I had occasional vertigo prior to GCA and still do. This may sound silly...but do you hold your breath as you get into bed? Do you close your eyes once you settle? I ask because though I got great relief from the Epley Maneuver~~I would still get a touch of vertigo only when I settled in bed. A therapist pointed out I was holding my breath while I lugged my body up and in; so now I consciously breathe in through my nose and out through my mouth. I also make it a point to keep my eyes focused on the ceiling fan. Once I think my head is 'in place'; then I'll close my eyes. Anything is worth a try. I wish you the best.💞

SheffieldJane profile image
SheffieldJane in reply to Grammy80

Thank you Grammy, that makes sense. I climb in very mindfully now and let my head settle before discarding a second pillow. No more headaches whew!

Saffron23 profile image
Saffron23

Hello Jane

I have had the dizziness and vomiting as you have described twice and it was covid. You might find some anti sickness tablets ( from doctor) help to stop the dizziness. A.Vogel make a brilliant nasal spray (Sinuforce) too which I find keeps my head clear when I feel sinusy. I hope you feel much better soon 😊🌸

SheffieldJane profile image
SheffieldJane in reply to Saffron23

I wondered about the big bad C. I had been in a busy farm shop a few days previously. I could do with a better sinus spray, mine ( prescription) doesn’t do anything.

Saffron23 profile image
Saffron23 in reply to SheffieldJane

The nice thing about the spray is that it’s natural and you can use it as much as you need to. Sarah x

SheffieldJane profile image
SheffieldJane in reply to Saffron23

I have sent for some. It behaves like an allergy with violent sneezing fits. Thank you!

icu2 profile image
icu2

look up BPV. benign peripheral vertigo. IF dizziness continues the different but effective exercises may be your solution.

deals with those darn “ floaters “ in your ears which become dislodged for some reason….coughing, inflammation, sudden movement etc.

works for me after several years of trying to figure it out. depending upon severity the first attempts at exercise may cause immediate , extreme dizziness. don’t dismay. it just means you found the source. keep on.

alangg profile image
alangg in reply to icu2

Is BPV similar to BPPV? I was diagnosed with BPPV when I was tapering pred and was offered the Epley manoeuvre by my GP surgery. The symptoms lessened after a couple of days and then went away so I didn't need to go.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to alangg

Benign positional vertigo (BPV), also known as benign paroxysmal positional vertigo (BPPV), is the most common cause of vertigo. 

More info -

dizziness-and-balance.com/d...

SheffieldJane profile image
SheffieldJane in reply to DorsetLady

Yes, that fits the most except for adrenal issues and LVV/GCA worries. A much more bumpy ride than just PMR.

SheffieldJane profile image
SheffieldJane in reply to DorsetLady

I want to save this treasure trove of responses but can’t see how. Can we still do this?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to SheffieldJane

Just save the post although as it’s yours anyway you’ll always have access to it from your profile

SheffieldJane profile image
SheffieldJane in reply to DorsetLady

Duh! Thank you 😬

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to SheffieldJane

S’okay…happens to us all at times…😉

icu2 profile image
icu2 in reply to alangg

i would say yes…dorset lady called it benign paroxysmal positional vertigo. …when it recurs i just do the exercises. a simple solution that may fit the needs of some.

SheffieldJane profile image
SheffieldJane in reply to icu2

That is helpful. Thank you!

SheffieldJane profile image
SheffieldJane in reply to icu2

Yes it caused the whole room to sway, but things have improved. Thanks!

Sho-Sho profile image
Sho-Sho

it does sound as though it is a virus. I have very similar symptoms nearly mirror imaging you. Tapered to 5mg having been on steroids for 6 years due to GCA, have acute sinus, often feel extremely dizzy & nauseous (though not being sick) & cracking headaches but not like the GCA ones & usually with a couple of paracetamol & resting it eases off. I have given up trying to taper as if I do I feel terrible (the adrenal function synthacen test showed very minimal response & then I feel even dizzier. So hopefully it is viral.

SheffieldJane profile image
SheffieldJane in reply to Sho-Sho

Yes, my balance has been off for ages. I am sure it is all connected. Paracetamol does seem to help. I have just got abdominal pain under control with diet and small portions and Buscopan. I have discovered via Google that there is a gastric- vertigo. It could be that. Thank you.

Jackoh profile image
Jackoh

No wisdom from me I’m afraid but do hope you get this sorted soon Jane- you’ve been having a tough ride. 💐

SheffieldJane profile image
SheffieldJane in reply to Jackoh

It does help to share.xx thank you.

Pixix profile image
Pixix

yes, sadly, quite regularly in past year. Mine is vertigo. I try the Brandt Daroff manoeuvre, it seems to work, but not for long. I was just painting skirting boards last week, looked up, then down, room swam, felt nauseous,n just made it to bathroom. Last week I bent down to pick a week, top of rockery, world swam f moved I fell off rockery, hitting head on rock, bruising shoulder & elbow & dislocating two toes & spraining ankle. Deep joy. I take anti sickness tablets as soon as I feel it starting, but thry dope me! I’m meeting with Dr next Monday & going to ask if there’s an alternative & why it’s getting more regular!! Hard luck if it’s this,nuts truly awful (worse than PMR, for me, as it comes on suddenly & hits hard sometimes!) hugs, S x

SheffieldJane profile image
SheffieldJane in reply to Pixix

Oh Pixix, you do so much more than I would even attempt, your injuries are shocking! I think that I have been in denial about long term giddiness. I had my deep skirting board replaced by tiles in the bathroom because of this. Did your doctor make any link with your overall autoimmune condition? I bet they didn’t. There are clever devices for weeding, whilst upright. Hugs, J xx

Pixix profile image
Pixix in reply to SheffieldJane

Yes, but then do I prolong my suffering, or make some of it? Just because I’m so determined doesn’t mean it’s good! Spent Easter 3 days painting huge gazebo in garden (with hubby doing all the parts above my elbow height, as it hurts me too much)! But seeing the great change in it, & buying some furniture (which also requires building) is great! Yes, I understand…my balance has been ‘shot’ for years, but now the nausea & sickness are the thing I really hate, & need to do something to correct!! So far, we haven’t had time (Dr & I) to discuss any link with immune system, we’ve been busy dealing with new Raynauds, worsening hypermobility, probability of Ehlers Danlos syndrome, & potentially sero negative arthritis…oh & bursitis & sciatica! Once that lot has settled down I will ask him! So much of my ‘interesting collection’ of new medical conditions are linked to immune system! Ah, now, 5 & 6 winters ago I had total of 9 chest infections & was referred to a Professor in charge of difficult cases!! After many tests he concurred that I must have immunity issues. He was going to “send you to my friends in the dept that deals with it” but Covid struck, & he got extra jobs, so I agreed to shield each winter to avoid the common cold, as my system can’t deal with one, basically!! Yes, devices for upright weeding, must get one…but I just saw one, just one, weed & went to pluck it out the ground…I was on my way into our cottage!! Ha ha!! Keep smiling, Jane, sending hugs & sympathy, S x

Merryfield profile image
Merryfield in reply to Pixix

Pixix, what stamina! I avoid moving my head from side to side and alert dentist and hygienist to this.

Pixix profile image
Pixix in reply to Merryfield

um…sort of…more like a daily battle, starting with not wanting to take my head off the pillow, tbh! I’m trying to learn to move my whole body to look left f right & not just head, but it doesn’t come naturally, does it?!!! My worst, atm, is bending down & straightening up which has never been a problem previously! A learning curve! Thanks, S x

Merryfield profile image
Merryfield in reply to Pixix

oh dear. there is that pincer with the squeeze handle thing that u can use to pick things up with so you don’t have to bend over. yes i turn my upper body much of the time v

Pixix profile image
Pixix in reply to Merryfield

Think I need to train myself, really! But yes I could buy one of those, too! Thanks, S x

SheffieldJane profile image
SheffieldJane in reply to Pixix

You are an inspiration. I am clearly a wimp. Do be careful though - crikey!

Pixix profile image
Pixix in reply to SheffieldJane

NO! You are the inspiration…behave properly, rest when you should, obey the rules. That’s the right thing. I remember my first couple of posts…was told off well & truly for overdoing it, & they were quite right, too! Take care, S xx

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Pixix

Umm... think you might still be overdoing it! But if that's in your nature its difficult to stop....😏

Pixix profile image
Pixix in reply to DorsetLady

I agree! I’m the worst patient ever….spent 4 hours cooking meals & biscuits to take away in motorhome, then, after a sandwich I spent an hour mending the electric bed in the aforementioned motorhome, then went round to neighbour for coffee, & play with puppy time, then I pinned out some crochet I’d finished. That’s my quietest day this month so far. Stopped now. Hit brick wall at 6pm! In my defence I’ve never stopped…ever…for anything, really! If it’s ever dry again, have half a gazebo (large sized) to paint, but if wet have half a ceiling & a skirting board in bedroom…but it’s hard when you can’t lift your arms above your shoulders. I never get bored, though! S x

SheffieldJane profile image
SheffieldJane in reply to Pixix

No! I am currently getting cobwebs. I need an injection of Australian grandchildren - they are coming in June, two of them.

Pixix profile image
Pixix in reply to SheffieldJane

but you’re not getting mental ones you’re always active on this forum. Lovely to hear your grandchildren are coming over, that’s exciting! Something to look forward to…always important. S x

sondya profile image
sondya

I had a horrible bout of vertigo some time ago, and someone suggested doing the Eply maneuver. Friends either said it worked for them, others said it took several goes or never worked.

Lucky me - first try and it worked. Never came back.

Another suggested finding a doctor with a TRV Chair.

Best of luck.

interacoustics.com/balance-...

medicalnewstoday.com/articl...

SheffieldJane profile image
SheffieldJane in reply to sondya

Eek! That chair! You have always been a tough cookie sondya 😉. Very helpful links thank you! I hope you are in good health yourself.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to SheffieldJane

Not my cup of tea either but probably great training if you want to be an astronaut!

sondya profile image
sondya in reply to SheffieldJane

Had to do something as I was afraid to drive.

Been off pred a couple of months ago (PMR) but latest in the bag is Sjorgren's Syndrome - dry eyes and mouth. Annoying. Still on three monthly blood tests for the other two. Rheumatologist has decided my GP should monitor health and tests and only refer to him if elements of GCA appear. Cheers.

SheffieldJane profile image
SheffieldJane in reply to sondya

Do they do anything special for Sjögren’s ? I have the sandpaper mouth and dry eyes and use pastilles and eyedrops. These symptoms haven’t alerted my GP to Sjögren’s and I understand that there are more complexities to the condition. Another autoimmune condition!

PMRpro profile image
PMRproAmbassador in reply to SheffieldJane

Looks preferable to the good old-fashioned tilt table!!!

Flivoless profile image
Flivoless

I don't take any meds except Pred and when I first went from 5mg to 4.5mg (currently flaring unfortunately) I sometimes felt the room spin somewhat when I lay down.

SheffieldJane profile image
SheffieldJane in reply to Flivoless

This was my first thought. I had no trouble first time round with just PMR.

Blearyeyed profile image
Blearyeyed

Sorry for the late answer.I have these symptoms most of the time.

The dizziness on putting your head down , does it reduce in about fifteen minutes or continue?

Do you also feel palpitations?

This can be a sign of Orthostatic Hypertension or Hypotension.

It's worth checking this if you have a BP monitor and a person on hand.

Take your BP after you've been sitting up and still for fifteen minutes.

Keep your monitor on .

Lie down on the pillow and get your helper to read the BP reading taken after a minute of lying down.

A big swing in your BP , up or down , indicates the Orthostatic Hypertension or Hypotension .

A swing of 30 beats or more in heart rate indicates various Autonomic heart rate issues related to positional change.

Take another reading after ten minutes if lying still.

If you readings return to normal it is a mild autonomic symptom and can be helped by drinking some cool water quite quickly before you lie down. And doing slow breathing for a minute after hitting the pillow. Having your pillows in a raised position so that you head isn't flat is also helpful.

This type of Autonomic change can be very common if your suffer from some Autonomic Nervous system dysfunction linked to the Adrenals beginning to try to take over the functions the Pred was keeping in a status quo.

If your blood pressure symptoms remains high or low while lying down for ten minutes check it lying then sit up and check it again after a minute. This may require chatting about at your surgery on your next appointment. Longer intervals of Orthostatic Hypertension could mean you need a medication to help or may need to change the time you take a medication in the evening to reduce the chance this is a side effect of it that would only show up after your Pred doses were lower .

Second options , linked to the night dizziness and daytime vomit.

As others have said a viral sinus issue , or if you suffer from sinus congestion regularly it can be part of this issue escalating to cause my most suffered option below.

That is , the Vestibular Migraine , Du , Du , Urghhhh!!!!. Migraines which do not always cause pain but sometimes do so like a thunderclap for as little as a few seconds to a few minutes often alongside dizziness or near fainting on movement , commonly causing vertigo , palpitations, feeling of weakness in the legs on movement , sometimes tremors , speech slurring or vomiting. If you don't have a Chronic Migraine condition the vestibular migraine is usually acute , sinus related , or part of autonomic dysfunction related to changes in your condition like , an infection affecting the sinus , eyes or ears, fibromyalgia or a temporary withdrawal symptom of drug changes especially when you are coping with adrenal insufficiency.

So , hopefully it is viral , or sinus , and an easy change to that medication will solve it as soon as the congestion has cleared.

If it is migraines unrelated to a virus , slowing down the speed you change the position of your head when you move , drinking some cool water quickly before getting up or lying down, using valsalva breathing techniques when heartrate or blood pressure is raised, lying with both head and shoulders comfortably raised on pillows to sleep ( for naps not just at night ) and seated relaxation breathing in fresh air (even next to an open window) a few times a day can help these types of vestibular symptoms and migraine types related to circulation or Autonomic symptoms of Adrenal insufficiency.

You will be taking supplements already but if you haven't had it checked recently request a Ferritin , vitamin B 12 and D , Folate and Iron blood tests to check for low or Deficient levels.

After the test it may still help to increase your intake of vitamin B 12 , D, Magnesium and Folates.

You should start writing a headache or symptom diary and noting your BP and heart rate for a few weeks just in case it is something which will happen more commonly so you can show the GP , have it checked and get a migraine related medication to help.

Hope you feel better soon ,,Bee

SheffieldJane profile image
SheffieldJane in reply to Blearyeyed

Thank you so much for going to the trouble of providing such a comprehensive and detailed reply. Some of it really resonates. My GPs never take the trouble to link seemingly disparate symptoms and I have become reluctant to detail them and just offer the most bothersome one. I cannot use my Rheumatologist like a GP but she is wonderfully thorough.

caftan profile image
caftan

I too have expderienced vertigo since being diagnosed with PMR in August 2019 although I'm not sure if there is a connection. I am 83 this month and have had 2 extremely unpleasant episodes for the first time in my life. On each occasion I had to be taken to hospital. Also on both occasions I felt completly paralysed, my limbs and body did not want to move and on the first occasion I just wanted to sit with my head resting on my hands and elbows in my lap. I was violently sick on the first occasion and wretching too. The whole episode, including going to hospital by ambulance, lasted about 5 hours before I began to feel better. I was allowed to go home after about 8 hours. The second episode happened at 4 am when I was at home alone. It was very frightening. This time I was wretching again but not actually sick but again I felt paralysed. I phoned for an ambulance - paramedics did lots of tests and advised that I should go to hospital. Once again it was many hours before I started to feel better. Doctor was administering medication while I was in hospital. I have no idea what is causing the vertigo. My GP has arranged for me to have a brain scan and this will take place next Sunday. I also have an appointment to see an audiologist about my right ear on Saturday. I am convinced I have a problem with the inner ear which has been troubling me for some time now. No pain but deafness which seemed to happend quite suddently many months ago.

PMRpro profile image
PMRproAmbassador in reply to caftan

Was it diagnosed as sudden sensorineural hearing loss? Was it treated at the time?

nhlbi.nih.gov/health/athero....

caftan profile image
caftan in reply to PMRpro

I never had an appointment with an audiologist except to look in my middle ear with a view to getting hearing aids. I just assumed my hearing had suddenly got worse. It's only recently that I mentioned it to my GP and she referred me to a specialist at my local hospital. I had expected to wait for 6 months for an appointment but fortunately I have been offered one after just two months. I am just glad I have the brain scan and audiologoy appointments this weekend. I may get some answers.

PMRpro profile image
PMRproAmbassador in reply to caftan

Immediate treatment with high dose steroids can reverse the hearing loss but it must be immediate, within hours, It's like a stroke just affecting the ear.

SheffieldJane profile image
SheffieldJane in reply to caftan

What terrifying experiences, especially when you are alone. I hope that whatever it is, can be treated successfully. My diagnosis is now GCA/LVV my PMR was quite uneventful. You have reminded me of a series of very bad ear infections before my PMR diagnosis 8 years ago. I always thought Prednisalone had sorted it out and of course I am at the low doses now. I also experience occasional tinnitus and a blocked ear. Blowing my nose hurts my ears. I would not be surprised if my middle ear was at fault too. Thinking of you. Let us know x.🌼

caftan profile image
caftan in reply to SheffieldJane

I will keep you posted as to the results of the brain scan and audiologist appointments this weekend. Thanks you Sheffield Jane

caftan profile image
caftan

I forgot to say that they gave some medication to bring home with me from hospital and it is called Prochlorperazine

SheffieldJane profile image
SheffieldJane in reply to caftan

Your medicine is an anti-nausea tablet. Good luck with your tests!

Happy Birthday for later this month. 🎈

Missus835 profile image
Missus835

It's like some new "thing" is added daily SJ. I now seem to have another UTI, for which I'm taking an antibioticm which now has the Oesophageal Spasms riled up. It's just another thing that irritates the digestive system. DGL does seem to help with the spasms though. Hope you get to the bottom of your dizziness. Sounds like back in the day when I'd had too much to drink and the room would spin. Horrible feeling.

SheffieldJane profile image
SheffieldJane in reply to Missus835

Yes, it is exactly like that but without the fun.

I did try the eply manoeuvre and after an awful wave of dizziness it appears to have helped.

You have all my sympathy for the oesophageal spasms. I had a phase of them. Sips of cool water, keeping calm and Rennies ( over the counter indigestion remedy) cut them short.

Missus835 profile image
Missus835 in reply to SheffieldJane

Thanks SJ. Hoping it clears up for you soon. Take care.

Boss302Fan profile image
Boss302Fan

I had BPPV Vertigo occasionally while I had PMR expression, and still do now and then. My GP didn’t believe it had anything to do with PMR. BPPV is caused by minute calcium carbonate crystal(s) getting into one, or more, of the 3 ear canals. The treatment is determined by which canal the crystal resides. Anyway, my GP sent me this info via the portal and I transferred it to my computer and phone so have it readily available. Do need a person to watch your eyes movements during the Dix-Hallpike Maneuver to distinguish what canal is affected, after which you may decide to do the follow-up maneuver alone. In my case it’s only been my posterior canal and the Epley maneuver took care of it. Fortunately it’s fixed immediately.

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BPPV - How the inner ear system works:

youtu.be/YMIMvBa8XGs

Dix Hallpike Maneuver for BPPV diagnosis:

youtu.be/wgWOmuB1VFY

Epley Maneuver (for posterior canal):

youtu.be/9SLm76jQg3g

Or Half-Somersault Maneuver (also for posterior canal):

youtu.be/Wez9SZJ7ABs

Lempert Maneuver (for lateral canal):

youtu.be/mwTmM6uF5yA

Deep Head Hanging Maneuver (for Superior canal):

youtu.be/qw1QciZWfP0

SheffieldJane profile image
SheffieldJane in reply to Boss302Fan

Really really helpful Boss302Fan! I must save this thread! Thanks!

BabyRuby1 profile image
BabyRuby1

omg. I have had positional vertigo for 40 years! It came from out of the blue. Doctor after doctor I went to for years. Can’t sleep on left side or I get vertigo. Only right side. Never sleep flat either. Always have head higher than body. No doctor knows why or how I got it. I have trouble looking up also. It’s the worst but I’ve lived with it for years. I take 5 mg Valium when I get an attack and lay down and rest. Just got PMR two years ago also. Again doctors don’t know why. I have learned to live with vertigo. Usually get 2-3 times a year. Stress? Who knows now I have pmr too.

Remember to not sleep flat! Always a higher pillow or pillows

BabyRuby1 profile image
BabyRuby1

oh also. Epley maneuver doesn’t work only makes me vomit. I’ve tried everything

Boss302Fan profile image
Boss302Fan in reply to BabyRuby1

Epley maneuver is only applicable for BPPV caused by a crystal in the Posterior Canal. Won’t address the issue if it’s in the Lateral or Superior canal which requires different maneuver. Need to determine which canal is affected first that is determined by an observer watching your eye movement while doing the Dix-Hallpike maneuver. Is it side-to-side, up & down or rotational? If no eye movement is observed it’s not BPPV and none of the maneuvers are applicable. Also, have to do the maneuvers properly moving deliberately in the direction indicated and pausing 30-60 seconds before continuing the maneuver. Move too slow or don’t wait long enough (I use 60 secs) and the crystal will not complete the travel required. Really best to have a partner assist.

PS: Possible I guess to have crystals in the other canals at the same time, or multiple crystals in same canal. Not happened to me. But if still have vertigo after a maneuver I’d repeat the Dix-Hallpike and find out what the observations indicate. May have to repeat the same maneuver and/or do the others as well if symptoms persist. If all that fails, I’d go to the GP. I just followed the videos and let the GP know she was right on the diagnosis and it being BPPV.

BabyRuby1 profile image
BabyRuby1 in reply to Boss302Fan

wow you should be my doctor. I’ve pretty much given up on doctors. Been to so many, had tests, etc. Even put me in some kinda moving chair 🪑 n the dark! Ear doctors, specialists, one doctor told me I was crazy. I think n my case it’s partially caused by bad pain in n back of my head like a migraine but why only vertigo on my left side?

I usually know when my ears have a change on sound like someone cupping their hands over my ears for 4-5 seconds. I had lots of earaches as a teen from swimming in cold ocean water for years. Maybe that damaged my ears 🤔🤔….who knows

That is why I’ve pretty much given up on finding the cause and just living it’s it ☹️☹️

SheffieldJane profile image
SheffieldJane in reply to BabyRuby1

Have you had a neck X-Ray? I expect you have. I was diagnosed with moderate cervical Spondylosis via one. It can cause dizziness, my mother in law used to black out with it. Mine caused a hard pain at the back of my skull.

BabyRuby1 profile image
BabyRuby1 in reply to SheffieldJane

yes I have and been going to chiropractor for years which helps a lot but still have Episodes

Boss302Fan profile image
Boss302Fan in reply to BabyRuby1

Hardly, as I’m no doctor by any stretch of the imagination. But I don’t trust them either and question and start researching for publications if what they say doesn’t make sense. I trust more of what comes from PMRpro than most doctors because she doesn’t BS and you can trust what she posts is sound. I have an undergrad in Biochemistry and 7 years experience in Immunological Basic Research (mainly a high level technician). That gives me some skill in critical thinking and some foundation toward understanding much of what I may read in Medical Journals. Nothing more.

PMRCanada profile image
PMRCanada

Oh Jane, how awful. How are you doing now…any change or reoccurrence? It sounds like another frustrating set of terrible symptoms to experience and try to diagnose and resolve. Many folks on here with experience and information have shared, so hopefully the suggestions they’ve provided aid you as “play detective” again.

I will share that my hubby has suffered with vertigo multiple times of the BPPV variety, but the latest bout was triggered whilst at the physiotherapist and being aggressively manipulated. He was holding his breath while being twisted and boom, dizziness, vomiting, etc. He goes to our (wonderful) GP tomorrow to explore other light-headed symptoms and neck involvement. He gets headaches at the back/base of his head and had a vision incident. He just doesn’t feel stable and sleeping is difficult the first few hours after bed. We’ve looked up the symptoms online and there was info about cervical, rotational vertigo and vestibular arterial involvement/conditions, however in the end it will be the tests the GP orders that will hopefully provide insight, diagnosis and treatment.

I do hope you get to your GP sooner than later and please don’t hesitate the random symptoms and how they impact you. You never know what may be connected and even if things don’t line up, you still deserve treatment and care. Take good care. Sending you healing vibes.

SheffieldJane profile image
SheffieldJane in reply to PMRCanada

Thank you! I appreciate everything you say. I hope your husband’s horrible symptoms are identified and sorted quickly. I am feeling a bit better after trying the exercise I was given by Sondya amongst others, the Eley manoeuvre, seemed helpful.

discoballs profile image
discoballs

I had BPPV back before PMR and it was awful! I did take the pills mentioned in another post. I saw my GP and he diagnosed it right away.

I did do the Epley Manoeuvre...often and it all went away quite quickly

Be well Jane

SheffieldJane profile image
SheffieldJane in reply to discoballs

It has definitely lessened my dizziness ( Epley). Thanks for sharing david. X

Kailacobweb profile image
Kailacobweb

what about Covid?

SheffieldJane profile image
SheffieldJane in reply to Kailacobweb

Oh please not again. Not Covid according to a left over test.

GrandmaPirate profile image
GrandmaPirate

I do have PMR since 3 years, now at very low prednisolone 1 mg/day. I suffer from time to time of Benign Paroxysmal Positional Vertigo (BPPV), which can last for weeks. And then suddenly it can disappear for months. When I have BPPV it's exactly like you describe and it feels like I am seasick, not able to stand after I was laying in bed. Or when from standing I go to bed, it's like flying around in bed. MD's do not find an explanation. First I thought it was Menière's disease, but it isn't. I have suffered from it before I had PMR and prednisolone, so in my case I think it is not related.

Boss302Fan profile image
Boss302Fan in reply to GrandmaPirate

That’s awful. The first time it happened to me I had gotten up out of bed from being on my left side, rotated to sitting and stood up. I almost ate the dresser. I dropped back onto the bed and laid back on my left side and closed my eyes. Felt like the room was wobbling beneath me and while I didn’t vomit, it didn’t feel far away. Took about 30 mins for it to subside and I tried again but slower and as I started to sit up I felt it coming back and laid back down. Wife called our GP and she walked her through the process and took care of the condition, but I didn’t feel sorted out until the afternoon. So far, all repeat occurrences are from the same canal and the Epley maneuver fixes it. Never had a headache as part of the symptoms.

Before then, the only time I felt anything like that was after drinking 4 Rusty Nails within 1.5 hrs between dances at a Disco in my mid 20’s. From then on I limited my alcohol consumption to one drink an evening. What was worse than the BPPV was the hangover I had throughout the next day!

SheffieldJane profile image
SheffieldJane

That is helpful thanks! Upon googling the symptoms it seems to be unpleasant but harmless in many cases. Here’s hoping!

Gossiplady profile image
Gossiplady

hi SheffieldJane! I know how you feel. Vile! Are you in the UK? Go to chemists and ask for Stugeron 15 and lie and just sat you want them for a car journey. This is what my doctor told me. Take 2 twice a day until it subsides.I keep them in my handbag at all times. She told me it is a viral problem, and once you have it, it can crop up at any time. Sounds like our dreaded disease. She said she has had patients crawling on all fours into the surgery! We all asked her the same question, have I got a brain tumour? No. It is viral. Also on line from the usual place, they sell motion patches. I have never tried them, but they seem to have good reports. Keep smiling!

SheffieldJane profile image
SheffieldJane in reply to Gossiplady

Thank you Gossiplady.

Karenjaninaz profile image
Karenjaninaz

I had horrible dizziness for 3 months and was working as an anesthetist in the 18th floor of a hospital. Ginger root capsules , 500mgm each, 2 about 3x a day saved me from staying home- unable to work. Before this I had visited a neurologist and an ENT specialist. Both said “labrynthitis”. Rx for meclazine made me groggy unable to work.

Ginger saved me. Ginger ale and ginger tea are also helpful.

Ginger good preventive against motion sickness, nausea, flatus and- according to a pulmonary helps asthma by bronchodilator. Used it for dizziness of adrenal issues.

SheffieldJane profile image
SheffieldJane in reply to Karenjaninaz

I have ginger tea now.

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