Talk to me about Labyrinthitis

[jubbablub]

On Tuesday I went home early from work. Unable to drive home as I felt so dizzy. I work in a school as a teacher and I literally couldn’t walk down corridors without almost falling over. I’m 12 weeks pregnant so assumed low blood pressure/sugars.

Went to docs yesterday who has diagnosed labyrinthitis. Because of my job, I really feel like I can’t go to work. The doctor said this could last 2-3 weeks, but didn’t offer a sick note and gave me a prescription for stemetil.

Got home, all ready to take the tablets and lo and behold, they’re not actually safe to use during pregnancy. I just don’t want to take the risk with me being in the first trimester. My ears are ringing and so sore as are my sinuses. I feel like I’ve got drunk spinning room all of the time.

Have you had labyrinthitis before? How long did it take to clear? How long did you take off work? Going to ring my manager this morning, but I think she thinks that it is just a regular ear infection and I’ll be back in a couple of days.

Mine took a few days to resolve (with the sickness tabs) but it did come back (just a faint doze) every time I got over a cold for a few years. I didn't stay off work at all - you get used to it and can hug the walls, hold on to rails, etc but I am tough (and not pregnant) and have quite a few things wrong with me so this wasn't so bad. Hope yours clears up soon! My GP diagnosed me over the phone (I had to crawl to it). I don't get it anymore thank goodness.

I can’t really hold on to walls at work all day as I have to stand up, move around the classroom and teach thirty children. My whole body feels like it’s swirling.

When I had it there was no way I could even stand up to hug the walls. Moving my head made me throw up. Can't remember how long it took to go.

Take the time off if you need it.

DH had it a few years ago. It absolutely knocked him for six, he was in bed for over a week before the anti sickness meds kicked in.

You have my sympathies, I wouldn’t wish it on my worst enemy.

Stemetil IS safe in pregnancy. It is used for morning sickness as well as dizziness. I took it for nausea (though it wasn't that effective for me).

Had it on and off for years including when pregnant. Ended up being diagnosed with Meniere’s after over a decade of being told I had labyrinthitis periodically. Ended up having a labyrinthectomy on one side.

Stemetil injections were my friend when having attacks - I used to throw up profusely with the dizziness in an acute attack. I also had a stash of Stemetil tabs I used to use when it was just general giddiness. I would speak with your ob about it. My ob said both the injections (high strength) and tabs (much lower strength) were fine in pregnancy and I never had a problem getting the injection in A&E or a medical centre when pregnant. GP was also always happy to continue prescribing them in pregnancy. I think no-one had a problem with them as they were prescribed for hyperemesis in pregnancy before ondansetron was developed.

I’m really sorry to hear you are suffering. It is truely the worst thing.

I had it a few years ago. Couldn't walk in a straight line to go to the toilet! The first 2 days in bed, then the 3rd day made it to the nurse at my gp who diagnosed it and said it could be weeks, but actually i was fine after about 4 days and child go to work on the 5th day (a Monday, so could have probably managed after 4 days) . I wasn't pregnant. I think they may told me the worse case scenario

Sorry forgot to say i took no meds either

The Epley manoeuvre might work.

@NinaMarieP I’ve attached the NICE/MHRA guidelines on Stemetil 5mg tablets. It’s a risk I’m not willing to take.

Thanks everyone, I think it’s going to be time, some gentle walking and fluids. Will speak to my midwife about it tomorrow.

Hi o.p, I've had 3 bouts of this over the years and It's miserable. It can last anything from a few days to a few weeks I'm sorry to say. The only thing for it is to lie still, I take stemetil for mine though I appreciate that you're unable to. I seem to recall that there is another tablet that you dissolve under your top lip but I can't recall the name. Apparently ginger is good for balance so maybe get some ginger tea (or ginger biscuits!) Totally empathise with you-it's awful and hopefully it'll pass quickly.

Wow maybe I got off light with mine - sorry didn't realise a) it can be worse than I had and b) you are a teacher so wall hugging not so easy. I just had it when I moved - sort of like how you feel just as you are about to faint without the blacking out part. I remember trying to wash my face and keeping trying to drown myself in the sink and couldn't stop going forward- weird thing it is. Hope yours is short-lived!

I had labyrithitis...it initially lasted for around 2 months but i was able to go back to work after a month.

I subsequently have developed a number of other more chronic vestibular issues so experience ongoing dizziness but that doesn't happen for most people.
Stemetil doesn't help with the dizziness- its for the associated nauseous so it wont hinder your recovery not being able to take it.

My advice would be to take a couple of weeks off work but to keep really active during this time..problems often develop when people stop moving with labs or similar..if you keep moving your brain will learn to compensate and you will get better much quicker (unfortunately I've become a bit of a vestibular disorder expert over the last dew years!)
Hope you feel better soon.

Also ask the gp to check its not bbpv..the epley manoeuvre can be very effective for bbpv but not for labs but GPs often just diagnosis the problems interchangeably.

Hope you're feeling better op.
I've been to gp today, had ear ache all week, leaky discharge from ear and yesterday and today dizziness when I move or walk. They said I didn't have labrythinitis as the description I gave of the dizziness didn't fit. It's not like spinning it's more like distortion. So the floor comes up to meet me then backs away.
Currently sitting on sofa but feel like I'm on a boat. Got some spray on antibiotics so hope it's just an infection and this feeling passes soon.

Thanks all of you. I’ve bought some sea bands (acupressure bands from the travel sickness section of boots!!) and I feel like they’re helping. I have quite a strong reaction to acupuncture.

Bluesheep - I think that stuff is called buccastem, need to check if it’s safe to use. Hadn’t thought of ginger. Ironic when it was what I used for my early pregnancy nausea.

I’m going to see how the weekend goes, I don’t think my team leader/HR leader understand the condition. If I have an okay weekend, I might try to go in on Monday, but if I have to go home then that’s that.

labyrinthitis Is awful OP. I ended up in hospital when I had it a few years ago. I did have high temps as well though and a high heart rate. But it lasted over 2 weeks for me and even after that if I moved my head a certain way I felt dizzy.

I understand not wanting to take stemetil in pregnancy. If you aren’t well enough to go to work take a few days off to look after yourself, don’t beat yourself up about it. If you aren’t safe to drive should you really be working? Only you can answer that, but don’t be afraid to take time off if you need it, I know I needed it.

Since just before Christmas. It is driving me bonkers.

@Pregnantgrumpygal I agree, but honestly, teaching is so full of matyrs for the cause that you need to be seen to struggle through. If I still feel so bad I can’t face it on Monday, I’m going to ask to be signed off for a couple of weeks.

@Unescorted that must be so hard. It’s tough anyway. Have they referred you to ENT?

Buccastem has the same active ingredient as Stemetil, but I think it’s 3mg, not 5. I’m going to keep going without and get on the ginger tomorrow.

Has anyone had any success with vestibule rehab exercises? I’ve found some online and have a friend who is a physio, so I might ask him to run me through them.

Prochlorperazine is a 1st gen antipsychotic, I wouldn't take it in pregnancy either.

Unescorted - if you have had labarynthitis (or bouts of it) since Xmas you may have Menieres. I’d definitely get it thoroughly checked out by an ENT or too neurologist. As I said before I had ‘recurrent labarynthitis’ for a decade before I was diagnosed. Sometimes I had a few years between attacks. Once I got to someone who recognised it as Menieres and put me on appropriate diet and medication (daily preventative meds) the attacks became significantly less and were not as bad if I did get them. I even had around ten years without any labarynth issues. Then it all went pear shaped and drastic surgical action was required but apparently only around 5% of people can’t be well controlled on diet and preventative meds and require further treatment options (steroid injections in ears, gentamicin treatment or radical surgery if all that fails).

That should have said otoneurologist.

I've had labyrinthitis on and off for 15 years now. 1st bout, I couldn't stand for 2 weeks, and couldn't drive for 3 months.
It's a horrible feeling OP, don't envy you :(
Things that helped - cinnarizine was the only med that even touched the sides; ginger and peppermint for the nausea ; regular meals, even small ones ; keeping moving if you can ; no screens or books when it's bad ; and i know you're pregnant, but I got drunk when it was really bad - I felt drunk anyway with the room spin, so figured I may as well actually drink!

Curiously mine started in late pregnancy and has tailed off at menopause, no idea if that's a coincidence or not!