I woke up at 4am 4 days ago with an all too familiar feeling of vertigo.
I've had these episodes before, throughout my 34 tears, even as a young child, but usually limited to the one episode. Never has it been so long-lasting, so I'm naturally very worried.
Each episode is triggered when I enter a new position I.e. if I turn on my side to the other side, get up from a lying position, or go to lie down from a sitting or standing position, will trigger the vertigo spinning and associated nausea.
The length of the nausea is a directly correlated to the severity of the vertigo episode.
GP is suggesting i just "wait" for a couple months before they'd consider further checks, but this is unbearable. I can't sleep because of it.
My medication stack is already pretty intense thanks to my recent Graves diagnosis (hyperthyroid), but I have been making really good progress in all metrics recently through the block & replace approach - FWIW, my TSH now traceable and both FT3 and FT4 normal ranges.
I'm wondering if anyone thinks these protracted vertigo episode could be related to my thyroid issues? Perhaps I've regressed and perhaps related to my accelerated heartbeat (I have been feeling rather more anxious and tight-chested recently, but I don't see much evidence about this online).
Has anyone else suffered this way or is there a suggested alternative forum you think I should visit?
Many thanks
N
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I was completely fine the day and night before it occurred. Nothing I did was outside of my usual routine in the slightest.
Day 5, and the vertigo is still here.
It only triggers when I move from a position that I'm in. For example, if I am lying on my right side, then turn to the middle, to the left, or sit/stand up, it will trigger. Eventually, after 10-20 secs, the episode will abate, but I'll still feel shaky and nauseous after each one.
FWIW, my girlfriend noticed a tiny piece of tissue paper stuck in my ear a day or two before this started. She tried to prize it out with a Q tip, but only pushed it in further. I told this to the GP and he laughed it off as cute, but impossibly the cause.
So I'm not sure if it's an infections, meniere's or BPPV... Or something else more sinister.
Forgot to mention that the GP prescribed betahistimines, but they don't do anything. No effect whatsoever.
Ah sorry - no. Never got to the bottom of it as I only had a handful of sporadic, short-lived episodes so I never followed through with investigation. a bad move in hindsight.
We haven't spoken about BPPV yet, or anything else. Only had an initial consultation and GP basically said that 4 days isn't enough time to seek treatment and that I need to be having these symptoms for a couple of weeks before pursuing further treatment.
GP said it is most likely an infection inflamming the inner ear, which will pass with time, but I think she's just kicking the can down the road and not showing urgency because I don't really have any other symptoms...
Given I've compiled a list of about 8-10 possible causes for this vertigo, given my triggers (I.e. Moving between positions), I was hoping to rule out as many possible conditions as possible, so that I can into the next GP appointment with less time consumed on questions that are probably not relevant.
Blood pressure I haven't checked, but my watch tells my my heart rate is within my usual bounds (50-60) - thanks in part to the propranolol (beta blocker) I've been taking, which I had remaining from the time I was diagnosed with hyperthyroidism.
Only other thing to note is that I do have a stiff neck, but I've had stiff neck / neck ache throughout my life, but never experienced vertigo as well. And before the initial episode 4 days ago, I didn't feel particularly stressed or anxious, beyond my normal rates.. Nothing crazy was going on with my life.
Since the onset 4 days ago, naturally I am a lot more tense and anxious, as I have to consider every move I make to try not to trigger the vertigo.
FWIW, I haven't noticed tinnitus or any ear related pressure or pain. Don't want to rule out meniere's, but I don't seem to have any of the symptoms I've read about, at least not now.
Well, if she can give u a medication that can stop the vertigo or greatly lessen it, otherwise she shouldn't be talking like that - what 4 days isn't sufficient to seek treatment?! Dizziness is very debilitating for everyday living.
Apologies I have not looked through your old posts. U have Graves confirmed by antibody testing?
Has your thyroid levels been tested recently? Whilst your symptoms do not sound like its thyroid-caused, dizziness is a symptom that affects some when they go hypo. However, your symptoms sound more like positional related.
Hi - I will call back today and see if there's anything that can be done by way of ENT referral, but I guess that as a result of covid, GPs and trying to minimise their patient interaction and upstream referral counts.
Yes Graves confirmed by Antibody testing. If helpful, I keep a detailed log of my bloodwork over time docs.google.com/spreadsheet....
Oh and neck ache isn't anything chronic, just now and then, I've been particularly stressed or come down with a bug.
Also, it's day 5 and the vertigo is worse than the other days. In that it is triggered by less and less acute movement or sudden movement.
For example, yesterday (day 4) was my best day. I could and did trigger vertigo, but it felt like the triggering range of notions was much less pronounced.
Today however, even quarter turns in bed was enough to trigger a 5 second spell. Getting out of bed takes about 3 to 5 attempts and has to be done super super slowly.. Much more slowly than yesterday for example.
BTW - With what I've told you so far, is an ENT the most relevant referral pathway initially, would you have thought? If I can't organise a GP referral in reasonable time, then I'll have to pay out of pocket to go privately (as I exhausted my private medical insurance on the thyroid debacle)
Oh and - really, thanks for talking back BTW. Its more helpful than you can possibly imagine to have someone just take the time to talk back. It astounds and surprises me and I'm very grateful, as this experience is very frightening. With most conditions, rest and medication can help. With this, I can't seem to manage it at all!
It sounds so much like BPPV or possibly labyrinthitis , either way you ought to be prescribed anti nausea pills NOW.
I was prescribed proclamazine (not sure of spelling) but nip down to your pharmacist and ask him or her for something over the counter BUT telling them of your thyroid. You can get over the counter travel sickness pills that will help.
I have been prescribed both Buccasten (from the emergency out of hour a GP wing of my local hospital) and then Betahistine Dihydrochloride, neither of which seem to reduce or have any effect on the vertigo, but may be helping with the post-episode nausea.
Helps with the nausea (not completely but it improves.). But I couldn’t be sure of inter reactions with existing meds. So consult your pharmacist - they are good on this sort of thing!
I posted just now. Also, you can do exercises to train your brain to accept what your eyes are telling it not your ears. Brain &Spine Foundation, read their website. There are some simple eye exercises that won’t make you more nauseous, try them gently.
I just got back from an appointment with an ENT doctor who has confirmed what I am going through is BPPV.
He did the pike manoeuvre on me and it's safe to say we found the issue is on my right side, in what was the most uncomfortable 10 seconds of my life. I wasn't able to complete the manoeuvre and opted not to follow through with the Epley motions as a result.
He said that BPPV will heal itself, even without these exercise motions, but can take up to 3 months to do so.
He also said that in in his experience Epley will work in 50% of cases - odds which I did not like given the experience I'd have to go through.
I'm sorry I don't have the answer to your question. But this ENT doc u saw, sounds like he knows what he is doing. The exercises though, do not sound very easy.
Off topic. Could I ask what happened with your private insurance re thyroid?
And thanks for sharing your thyroid results. It was an interesting look through.
Hi Ling - glad you found them useful. Unfortunately I didn't repeat the full blood tests after the first couple of rounds so it's possible there are big swings in other areas, but we'll never know!
I just hit the maximum policy payout threshold through l the thyroid doctor's fees and tests etc. In the UK that's how it works.. Your private policy has an "outpatient" cap, but it restarts annually. So I think mine restarts in June.
Let me know if you'd like to know anything else about my thyroid story and/or the block and replace treatment that I am on
Hi Ling - I don't really have a good answer for you and even practitioners who prefer this method don't have a scientific basis for it, but the theory runs (and his clinical experiences corroborate) that patients are less likely to slip into a hypothyroid state during block & replace when compared to a carbimazole titration method alone and the patient will this require less handholding and dependence on tests & endo consultations.
While searching for an endo, my shortlist boiled down to a titration practitioner and a block & replace practitioner and I was just more convinced by the latter's results and theory, but at the end of the day, it was just trust. Wish I could give you a more scientific answer though, or why the endo thought I was a good candidate for B&R, but I don't have a reason (maybe he did).
Thanks for the honest feedback. Various readings indeed indicate no difference between the two. There is a forum member at thyroid UK for whom B&R has worked really well. I guess at the end of the day, if it works, that's the most important thing.
I was told (by ENT consultant) that Eply is 80% effective.
I’ve not heard of Pike.
However, I’ve had Eply three times. The second time I wasn’t ill but the third time I was physically sick in the doctors surgery. This was two years ago.
I haven’t fully recovered but I know :
1. How I got it in the first place, by doing Pilates lying down
2. How to stop it spoiling my life - I don’t look up to the sky, so if there are interesting birds like red kites flying overhead I am careful not to look upwards, I turn over in bed very slowly, I used to do the eye exercises but got to a level where I wasn’t improving any more so these were a waste of time - they were marvellous when I was very nauseous though.
I take the pills occasionally.
So, in my experience the BPPV does not always heal itself.
BUT. I’ve really learned to live with it and it hardly impacts my life at all.
Yeah I don't blame. Probably why it's so scarcely practised! Worth double checking different resources. Not sure when the article you found was published, but maybe, just maybe, there has been some advances in the procedure that might be worth investigating.
But even if not, it sounds like you've got your symptoms under control and I truly hope they disappear for good.
I'm learning which kind of movements to avoid also.
But I thought it was binary - I. E. You either have bppv and associated vertigo or you don't.. I. E. The crystals dislodge, or they don't and I didn't think there was a middle ground, but perhaps x percent of yours have (probably through the Epley you did) and the rest is just a waiting game? Not sure how it works..
Hi there - in a previous post I mentioned that I struggled with the manoeuvre and was unable to withstand the vertigo in the required positions.
So I'm still asking around to see if there's anyone else in my position, unable to perform the Epley moves, yet still found their BPPV abated with just time alone?
It seems like I'm the only person on the planet who can't do the Epley
I think I said before, I’ve had Eply three times. The first time I was ill for two days then it worked very well for a year or so, then had it again and it was great. The consultant suggested I do it at home from UTube but I couldn’t get the courage to do it so saw my doctor, He performed it and I was sick in the surgery.So no, you’re not the only person on the planet who can’t tolerate it, there are at least two of us!!!
Curious.... After the sickness, did you feel better?
BTW, I bit the bullet and had the Epley performed on me today by a vestibular physiotherapist. She was great and had a good "bedside manner". Told me that she's had grown men crying in fear before and after having it done, but that the success is so high, you'd be crazy not to try it.
Feel a bit unsteady, but I think the vertigo has gone! Will keep you all posted nonetheless.
After the first and third Eply I was I little better after about a day, but not well or safe enough to drive for about a week. The second time it was all great. First and second were performed by specialists (GP who specialises in ears firstly, consultant secondly) GP thirdly.
My husband had an episode of vertigo,never had it before, he'd just been given hearing aids, he was so bad we called 111. The medical assistant who came up said it may have been something to do with pushing the aids in too firmly trapping air or something so there could be something in what your girlfriend did
Yes, we are certain that it's either the tissue paper that got stuck or the subsequent attempts to recover it with a Q tip that triggered my BPPV - too much of a coincidence otherwise. But, then again, what do we know
He was given anti nausea pills and shown how to do the brandt-daroff exercise easily found online. This made a big difference and he was back to normal within 2 to 3 days
Also regarding the epley move my husband tried that himself earlier in the day and it made him really bad. He was told later by the medical assistant that you shouldn't do that move on your own as it should be done by a professional. The Brandt-daroff is less aggressive and can be done at home
I am going to have to try the brandt daroff. The gp tried the Epley and it didn't help. Had a telephone consult with an ENT who's told me to come off the prochlorperazine which I take every day as I feel so rough and have been given Cinnarizine to use instead. Just had thyroid results back as I have hashimoto's and my TSH is now over 5 when its normally under 1. No wonder I feel absolutely shattered but it appears the tablets have probably caused me to go hypo again which isn't helping either. My vertigo can last a couple of hours and I vomit continually which is why I took the tablets every day. I'm really worried about sparking off an attack but I feel very spaced out and unbalanced. I tend to wobble and feel like I am going to fall backwards when trying to stand still. I think I will try the exercises before I eat as I am probably going to be very ill trying them. I have been suffering with dizziness since Sept but until I get tests done I am not sure what is causing it. Hope you find answers soon.
Sorry to hear about your double whammy of bad news. I trust you will you overcome the thyroid issues. I'm happy that YOU now have answers as to why you've been feeling so bad. That's the first, and hardest step in my opinion.
As for the dizziness... I could be wrong, but I believe the Epley manoeuvre and other akin motions are for dislodging - or resetting the calcium crystal formations in the inner ear canals, which is a condition known as BVVP.
So, the GP/ENT should have been able to (as conclusively as possible) diagnose BVVP before suggesting any such motions. I'd make sure that BVVP is the diagnosis and it isn't anything nerve or chemical-based causing your dizziness, or just general crap from your thyroid condition and associated meds.
I'm not expert, but if it isn't BVVP, I presume those exercises wouldn't help and I can only imagine them making your symptoms worse.
PS. I have been diagnosed with BVVP and I could not and still can't bring myself to do the exercises because of the vertigo onset I experience.
Hi. GP diagnosed BVVP after doing some tests in the surgery. My eyeballs flicker about when certain movements were done and lying back and turning my head caused dizziness. ENT wants to do scans and tests after speaking to me in a telephone consultation, think he's more concerned about hearing loss to be honest. I suffer from a fear of vomiting so like you am reluctant to do anything that will bring on the vertigo, it is horrendous and goes on for a couple of hours and lying down in a dark room with my eyes shut doesn't make any difference whatsoever unfortunately.
The good news is that you've got an ENT in line who is willing and suggesting to conduct proper scans and thorough testing! That's a big step in the process, so good on you.
Yeah your symptoms with the eyes flickering does sound like what I have too - BVVP. For what it's worth, the exact manoeuvre that was used to confirm the diagnosis was the "Dix Hallpike" test, which is what you probably went though also.
It's a bit concerning that you experience vertigo symptoms for hours on end though. Again, in my limited experience, BVVP vertigo symptoms are triggered "positionallly" and thus should abate when you remove yourself from aggregating positions (like lying down and facing the affected side).
If your vertigo symptoms aren't abating when in any positions, then this is very worrying and you should probably escalate. Personally, I would check myself into A&E immediately.
Thankfully the vertigo is not present all the time. I had four separate attacks in January which lasted a few hours although I feel groggy for days after. Light headedness/nausea most days but that was controlled by the prochlorperazine which meant that I was able to do some housework some days. February I didn't have any major attacks although still felt very unwell. March I have had a couple of rough days where I felt unable to get out of bed but most of the time I can pace myself and do bits and pieces. Thyroid playing up is a real problem though as its difficult to know if its the ears or not causing a lot of problems or if its thyroid. Used to faint and get nasty migraines when under treated so its really a pain in the butt trying to find the cause. Hopefully the tests will give answers and maybe stopping the prochlorperazine will enable my thyroid medication to do its job. Lots of blood tests being done again.
Hi and pleased to meet you.So many theories and no cure!
About 4 years ago I had a run of ear infections which refused to clear up and the Dr just said “can’t see suction her ears ““Unfortunatley for me the nurse hit the side of my ear causing me to wince in pain and this was my welcome to tinnitus or so I thought ,also in conjunction with this I also started suffering monthly debilitating episodes of vertigo lasting up to a week and was awful .I was mostly in bed frightened to move
I requested an appointment with an ENT specialist and off I went .
When I went in he said “not another dizzy women” I was ropeable and told him politely I was expecting a thorough consultation.I listed my tinnitus ,waking at morning feeling terrible but easing when up,and other symptoms (I can’t remember “as was pretty flustered .
He diagnosed me with a vestibular migraine which resonated with me as I had been looking into migraines as a possibility and I did have them in my 20,s and 30.s also.
The vestibular migraine as he said was my diagnosis and my symptoms were dizziness /vertigo and tinnitus .
He prescribed 10ml amytriptyline starting at 1/4 tablet until vertigo under control .I take 40 mg per day and dare I say it I have not had any vertigo.
My tinnitus is worse tho ,darn!It did take a while to tolerate it but is worth it as I now have a life .
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