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Original poster

Help with Vertigo please (tips, advice, how to approach treatment, etc.)

43 replies

Coucoucestmoi · 15/04/2023 07:24

Hello,

A few months ago, out of the blue, I had my very first episode of vertigo. It was horrendously intense. It started suddenly at night and didn't stop until after long hours spent at a&e. Everything kept spinning and I was sick and couldn't get up or walk without help. I was given drugs through a cannula and was discharged after I felt much better and could walk by myself.

I was given a prescription for Prochlorperazine and Metoclopramide. I continued taking the Prochlorperazine for another few days according to what I was told. The a&e dr told me to get in touch with my gp asap to get to the bottom of the vertigo. I had a telephone consultation with the gp the same week to discuss this and I was told about the medication but that I didn't need to be seen. Thinking the vertigo episode was a one off I was happy about that.

Fast forward to last week when I started having vertigo again. This time it started slowly and I didn't panic. I started the Prochlorperazine thinking it would help quickly as the vertigo wasn't intense but to my surprise I didn't feel an improvement. So I did some Epner manoeuvers and Dr Carol Foster manoeuver but nothing. It got so bad I got sick again. This time the vertigo lasted for more than a week 😞

I am late 30s and generally healthy.
How was your experience with vertigo and what was the cause, subsequent treatment, etc. ? Any tips, advice, secret recipes are welcome.
Thank you.

OP posts:
romdowa · 15/04/2023 07:31

I've had vertigo for years due to meniers disease. The only thing that helped me was vestibular rehabilitation, it retrains the vestibular system. It can make it worse at the start but it does settle over time. I had near constant extreme vertigo every day, some episodes it would feel like the floor was falling away below me.

cptartapp · 15/04/2023 07:32

I've had it twice several years ago, each lasting about 24 hours, I could barely get out of bed. I certainly couldn't have got to A&E. I had nystagmus too so just lay there and crawled to the bathroom with my eyes shut vomiting. It was horrific and I felt wobbly for days after.
I took Sturgeron (for travel sickness) which helped a bit. I carry them with me even now.
Last year I had sudden persistent 'lightheadedness' for three months and saw ENT privately and was diagnosed with bilateral vestibular hypofunction. This slowly resolved with gaze stabilisation exercises.
Don't think they are related but I just seem to prone to this sort of think. I vomit at the drop of a hat - travel, pregnancy, alcohol etc. it's miserable.
DH has had vertigo once too. He also spent the day in bed with the room spinning and vomiting with his eyes shut. It seemed to go as quickly as it came.

Original poster
Coucoucestmoi · 15/04/2023 07:34

@romdowa thanks for your post. How did you get diagnosed please? And how long after your first vertigo episode? And how did you get to the point where you were sent to have treatment?

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cptartapp · 15/04/2023 07:34

Yes vestibular rehabilitation. Google it. It took several weeks to help though.

Original poster
Coucoucestmoi · 15/04/2023 07:38

@cptartapp so you had two episodes and the vertigo didn't come back. That's a relief. I will certainly be reading about vestibular rehabilitation. Thank you

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DewinDwl · 15/04/2023 07:50

My sympathies OP - vertigo is horrendous, debilitating and scary.

I second the vestibular rehabilitation exercises - I saw improvement straightaway. Medication didn't help me and I was advised not to use it long term anyway.

Original poster
Coucoucestmoi · 15/04/2023 07:56

@DewinDwl thank you. Was the vertigo due to Meniere disease in your case? Which health professionals did you see and which tests did you have please?

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chickadeee · 15/04/2023 07:57

Causes could be
Meniers disease or
Vestibular migraine

Ask for a referral to ENT and an MRI as well as a full balance test (mine was at Guys and St Thomas’s) but I know Medway also do it.

Vestibular rehabilitation will help too.

Other tips:
Don't stay in bed for too long. Don't prop your head up.
The vertigo doctor on Instagram is a huge source of information.

Good luck. It's horrid.

Original poster
Coucoucestmoi · 15/04/2023 08:00

@chickadeee thanks so much. I have just followed the vertigo doctor on Instagram.

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romdowa · 15/04/2023 10:05

Coucoucestmoi · 15/04/2023 07:34

@romdowa thanks for your post. How did you get diagnosed please? And how long after your first vertigo episode? And how did you get to the point where you were sent to have treatment?

It took me 6 years to be diagnosed. I had to basically research it all myself and just ask the Dr look is this what I have? I was sent for some testing and then diagnosed and sent for the rehab. I was desperate for something as the medication didn't work and I was in my early 20s and felt like I was living on a boat

Original poster
Coucoucestmoi · 15/04/2023 13:52

romdowa · 15/04/2023 10:05

It took me 6 years to be diagnosed. I had to basically research it all myself and just ask the Dr look is this what I have? I was sent for some testing and then diagnosed and sent for the rehab. I was desperate for something as the medication didn't work and I was in my early 20s and felt like I was living on a boat

Show quote history

Wow, that's awful! But unfortunately not surprising. This is why I decided to ask here to know about all the possibilities before pushing for a diagnosis and hopefully treatment as I was basically told to just live with it. Glad that you finally got your diagnosis and subsequent treatment. So now the vertigo, I hope, is just a bad memory?

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DewinDwl · 15/04/2023 17:44

Coucoucestmoi · 15/04/2023 07:56

@DewinDwl thank you. Was the vertigo due to Meniere disease in your case? Which health professionals did you see and which tests did you have please?

GP refused to refer me anywhere so I have never even seen an ENT. I tried rehab exercises out of sheer desperation after seeing them on the Internet. An acquaintance that works in a related field (deliberately vague to avoid outing) explained that medication would only mask symptoms, and that the way forward is for the brain to learn to cope, and that movement and challenging myself would help me recover and she was right in my case. I paid for a private MRI scan to rule out anything sinister. I am still bitter at how I was patronised and ignored by the doctors and nurses at my GP practice.

Joolsin · 15/04/2023 17:50

I had several episodes about 12 years ago, horrendous. All were side-symptoms of an infection elsewhere - first was a uti, second a chest infection and it was taking antibiotics that fixed both the infection and the vertigo.

SittingOnTheSand · 15/04/2023 18:25

Thanks to those menitioning vestibular rehabilitation, my husband is going to chat to his consultant about it. My husband also has Meniere's.

Doobydoo · 15/04/2023 18:51

I was diagnised with vestibular migraine. I had sudden onset....lasted around 3 months solid. MRI,ENT,NEUROLOGIST. Many tests to rule stuff out. I still get episodes.I have prochlorperazine and triptans etc. Tis scary isn't it?

Original poster
Coucoucestmoi · 16/04/2023 06:33

@DewinDwl I am really sorry to hear about what you had to endure. Did you do the rehab exercises by yourself then? Or did you seek the help of a professional?

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Original poster
Coucoucestmoi · 16/04/2023 06:37

Joolsin · 15/04/2023 17:50

I had several episodes about 12 years ago, horrendous. All were side-symptoms of an infection elsewhere - first was a uti, second a chest infection and it was taking antibiotics that fixed both the infection and the vertigo.

@Joolsin glad to hear the vertigo didn't come back. I didn't know either a uti or a chest infection could cause vertigo. I thought only infections related to the inner ear or sinuses could cause it. Really good to know. Thank you.

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Original poster
Coucoucestmoi · 16/04/2023 06:38

@SittingOnTheSand I hope your husband will have his treatment and get better soon.

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Original poster
Coucoucestmoi · 16/04/2023 06:42

@Doobydoo I suffer from migraine too but I didn't get it when I had the vertigo episodes. Might still be related. Does the medication you mentioned work? Also, did you have any other treatment like vestibular rehabilitation?

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Doobydoo · 16/04/2023 12:38

@Coucoucestmoi Hi. I have 'normal' migraines too...I don't always get the headaches with the vertigo. I don't have any exercises. Am careful with caffeine/ wine etc etc. The triptans make me feel pretty rubbish..as in very tired and have to be taken if I feel onset of migraine. The prochlorperazine is meant to be taken when vertigo starts ..am not sure how effective it is really. I do know I have always had issues with certain types of lighting and echoey environments or lots of people talking in a small space. It can come completely out of the blue which can be scary.

TherealmrsT · 16/04/2023 13:20

I had a couple of episodes a couple of years ago and GP suggested it was labyrinthitis but when it came back with several episodes close together I had a private referral (as whoever I spoke to at GP practice said 2 year wait for ENT, she got vertigo every time she had a virus ...and had never referred anyone to ENT because of it...)
Had tests which show compromised balance and hearing and MRI which showed something that is perhaps contributing.
Last attack I lost balance and was sick but no vertigo.
Having vestibular physio, no medication but made lifestyle adjustments which are very limited alcohol, coffee and low sodium diet.
My tips....try the lifestyle adj, keep a diary of food, drink, activity and how you feel and then there might be a pattern.
I might well have meniers but diagnosis takes a while as based on a pattern of symptoms (so diary is helpful if you get to that stage).

Waitingfortaco · 16/04/2023 13:51

If everything obvious and acute has-been ruled out e.g. ear infection then you need a referral to the balance clinic. They need to find out the reason for the vertigo as there can be various causes. I have BPPV and vestibular migraine. The BPPV was mostly fixed after they did the epley maneuvere on me (it came back briefly after I had covid). I still have flare ups of vestibular migraine but I understand my triggers more (stress) and these are now mainly controlled as I am on antidepressants.

Basically you need to find out the reason.

Original poster
Coucoucestmoi · 16/04/2023 16:54

@Doobydoo thanks for your post. After seeing all those specialists, did no-one suggest physiotherapy/ balance exercises or some alternative treatment on top/ instead of medication?

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Original poster
Coucoucestmoi · 16/04/2023 17:01

@TherealmrsT two years wait for ENT? Was that during Covid? Have you been seen by anyone on the NHS? Do you private fund the physio? I agree about lifestyle changes. Thanks for your input.

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Original poster
Coucoucestmoi · 16/04/2023 17:05

@Waitingfortaco thank you. That's exactly what I'm after. I want to find out the reason but I am a bit pessimistic as from pps experience, not everyone takes vertigo seriously and might just tell you to live with it without any diagnosis.

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