Emma and Isla's Guestbook


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May 19th 2021
09:19:05 PM
What is your name?  

Alex

How did you find this website?  

My audiologist

Where are you from?  

Uk

Please enter your comments.  

Nearly two years so far of suffering with constant drunk like and off balance feeling. Took a year to find the right specialist who was a audiologist and diagnosed me with a vestibular disorder after months of different tablets , vertigo attacks , manoeuvres and no further forward. Continuing to do vestibular rehabilitation when my body feels it can ‘be bothered ‘ to put myself through more uncomfortable situations. Currently working full time again after a few months off to try push myself but struggling to see the light at the end of the tunnel. I’m only in my early twenties and worried this is my new normal and permanent condition... can anyone give advice of coping mechanisms or how they have over come this debilitating condition please ? Hoping to fly soon but so anxious about this too!

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April 26th 2021
10:07:07 PM
What is your name?  

Andrea

How did you find this website?  

Digging through google for help!

Where are you from?  

Nebraska

Please enter your comments.  

This site has helped me so much! Best info I’ve found! I was never officially diagnosed but I had all of these symptoms related to a bad sinus infection I needed surgery for in 2019. My symptoms lasted about 6 months at their worst and they were debilitating! Talk about an invisible disease people did not understand. I had a few days through 2020 where it came and went but for the most part it cleared up. Then! I recently had to take a plane trip and! I had to stay on the 68th floor of a hotel! Now all of my balance and dizziness is back in full swing and I’m so terrified it will never go away. My anxiety had been through the roof! And I know stress doesn’t help. Anyone else have issues with a flair up after travel???

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April 24th 2021
11:43:51 AM
What is your name?  

sian mitchell

How did you find this website?  

recommended

Where are you from?  

devon uk

Please enter your comments.  

l have had this condition for 4 years, then practically went for ages and now get bouts of it now and again, it seems to be when l look up more than usual or over do it and certain things can trigger it off so 8 years later and not entirely gone, and now VERY worried as l have heard this vaccine can make you really dizzy, l am too scared to take in case it returns, in fact petrified , has any one else had these thoughts or actually experiened this?

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February 3rd 2021
12:51:44 AM
What is your name?  

Deb Morrison

How did you find this website?  

searching for infor on labyrinthistis

Where are you from?  

Massachusetts, USA

Please enter your comments.  

I was recently diagnosed with labyrinthistis and am on Meclizine 3x/day. I am 68 years young. Active with local Community House music programs. This has isolated me more than I was already due to Covid. I’m having a hard time dealing with this ailment. Looking to meet others for support and best ideas how to live with this.
Thank you,
Deb Morrison

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October 19th 2020
09:07:10 AM
What is your name?  

Tracey Shadbolt

How did you find this website?  

Referred by someone on the Vertigo Support Facebook page

Where are you from?  

Australia but I am contacting you on behalf of my mum who is in the UK

Please enter your comments.  

Thank you for this amazing and informative website. You must give so many people hope and I have found it quite difficult to get clear information so this is amazing. Would have saved me a lot of time if I can come here first.
My mum is 86 and suffers terribly with vertigo. We think she has or had Labyrinthitis. She has been in bed and very scared for 12 weeks. She had a week where it disappeared and now it is back.

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September 24th 2020
07:52:19 PM
What is your name?  

michaela green

How did you find this website?  

got labyrinthis looking for help

Where are you from?  

Birmingham

Please enter your comments.  

plz help does it effect your eyesight

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September 6th 2020
12:16:16 PM
What is your name?  

Mambo

How did you find this website?  

Google search

Where are you from?  

Cheltenham

Please enter your comments.  

I had Labyrinthitis 20 years ago for about 6 weeks then thankfully it went, I\'ve had viral conjunctivitis for the last 3 weeks and it seems to have triggered the Labyrinthitis again with headaches, nausea, dizzyness , etc etc. Has anyone else caught it from another infection please ?. P.S. this website was very useful last time thanks.

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August 12th 2020
10:17:03 AM
What is your name?  

Mr D

How did you find this website?  

Google

Where are you from?  

Essex

Please enter your comments.  

I’ve been suffering on and off since Feb, had a really bad cold and then bang, a panic attack whilst at work out of nowhere, followed by two weeks of bad symptoms, they calmed, went on holiday and then had a little blip in a supermarket where the light seemed to make me feel a bit off like I was wobbly and going to pass out but that went as I went outside, then towards the end of June the dizziness came back, like a constant swaying, off balance feeling. Have had panic attacks since, worse when around people or in small shops, lighting plays a little part, I’ve stopped counting the weeks as the depression has got a lot worse. Think I’m on about week 13 of this new attack but it’s constant, every day, I’ve tried walking a lot as I know that should help, doing vestibular rehab vids on Facebook daily but it just seems like it won’t ever go away. I’ve been a strong person all my life but this is really getting me down and affecting my relationship with my partner who I know must be fed up and I haven’t seen my friends much. This site has given me some comfort in dark time’s, I’m just praying that some day soon this will go. Prochloperazine didn’t work and neither has Betahistine. My GP is waiting for advice from ENT. I just need to know that it will get better and I can go back to normality one day. What a horrrendous illness, wouldn’t wish this on my worse enemy. Sorry this seems like a rant but I just needed to let it all out.

Thanks

   
August 8th 2020
11:35:12 AM
What is your name?  

Mario Profeta

How did you find this website?  

Google

Where are you from?  

UK

Please enter your comments.  

Had VN/labs for over 4 months now. Tiredness and dizziness has reduced but still feel like I am living ‘life through a lens’. Has anybody had much luck with seeing a VR therapist? Did it make a difference?

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August 3rd 2020
04:20:19 PM
What is your name?  

Mark Wilkinson

How did you find this website?  

Referred by a friend

Where are you from?  

Camberley, Surrey

Please enter your comments.  

My wife suffered a severe dizzy attack whilst on holiday in California in 1993, and spent most of the 2 weeks in bed or hospital having tests. We\'ve visited several ENT consultants, and even received treatment at the Dove Clinic in Twyford for severe fatigue/ ME. She\'s been prescribed the usual drugs in the past, but nothing seems to have helped. Long car journeys, flights and even short boat trips can trigger an episode. She\'s even suffering now, which may have been brought on by stress over the loss of our dog a few weeks ago, and bringing a puppy into the house (lots of looking down seems to trigger it).
I\'ve come across the Neuro-otology department in London (UCLH). I saw a reference to it on the home page, but I was wondering if anyone had had any success in attending that clinic?

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June 30th 2020
04:43:14 PM
What is your name?  

Julia

How did you find this website?  

Google

Where are you from?  

Wales

Please enter your comments.  

I’m really struggling with what the Dr thinks is Labrynthitis. I’ve had it for just over two weeks. Is it normal to feel slightly better one day and then terrible again the next? The ringing in my ears is so loud, like crickets. I haven’t been sick but very dizzy when I stand up. I’m convinced it’s something more sinister which isn’t helping. Blood tests came back normal.

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May 27th 2020
01:23:57 PM
What is your name?  

Niki

How did you find this website?  

Google

Where are you from?  

Wirral

Please enter your comments.  

I have now had symptoms of labrynthitis for 4 weeks now, which gp is still calling “dizziness”. Feel completely useless, unable to do anything - not even read a book. Symptoms include :

Feeling of swaying, worse when walking but constant - even when asleep!
Headache
Light sensitivity
Cotton wool feeling inside head
Ear fullness and dull ache in front of ear and jaw
Sensitivity to sudden sounds
Heart pounding, anxiety
Unable to focus on near objects
Difficulty reading on laptop - makes symptoms much worse

Was prescribed nasal spray and Stemetil by one dr and then told by another doctor that they wouldn’t work and this will get better in a couple of weeks on its own. I don’t feel anyone is taking this seriously or understands how debilitating this is.

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April 29th 2020
03:50:05 PM
What is your name?  

Kirsti

How did you find this website?  

I looked it up on google

Where are you from?  

Selsey west sussex

Please enter your comments.  

I have had dizzyness fir 5 and half weeks GP says labyrinthvitus I am really scared it’s not going to go as see no improvement. What’s worse it will be hard to be referred with the current situation I am so scared

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April 8th 2020
02:26:39 PM
What is your name?  

Gill R

How did you find this website?  

12 yrs ago my saviour

Where are you from?  

sussex england

Please enter your comments.  

just to say Stay safe, and still come on here if you need any advice, LABYRINTHITIS AND MAV OR MENIERES are awful conditions to suffer with at the best of times, but you will get through it,look online about migraine associated vertigo which is called MAV for short just incase you didnt know what i meant

i have not had any replies to my advice that i left for some of your posts. so im hoping that your doing better now,

Gill R

   
March 15th 2020
02:03:57 PM
What is your name?  

Richard

How did you find this website?  

referal from Claire Bates

Where are you from?  

Darlington UK

Please enter your comments.  

i have had a number of diagnoses and been to a number of different doctors over the past few years. ive sufferd with virtigo for 15 years but have been chronically ill now for 2 years. my symptoms are almost the same as what you are describing on your website. feeling like im on a boat, constant feeling of being pulled down. pendulum feeling internally. ive had all the tests done and they have found a problem in my right ear. ive been in some dark places over the past two years and i wanted to thank you for the website. every time im feeling a bit low or i feel like im \'never going to recover\' i have a read of the recovery story and reassure myself that its just going to take time. luckily im still working although some days i feel like jacking it all in. im really positive that im going to recover and i wouldn\'t be like that if it hadnt been for your story\'s on here. thanks again

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March 9th 2020
09:42:10 PM
What is your name?  

Sean

How did you find this website?  

Google

Where are you from?  

Brentwood Essex.

Please enter your comments.  

Last August I woke up with severe dizziness and deaf in my left ear.
As the days went on, I got worse and worse, to the point where I was continuously being sick from the dizziness.
In the first week, I visited 3 different doctors, the first said its an ear infection, the second said I had a large build-up of wax, and the third said its fluid in the ear.
They were all incorrect!
After eventually being referred to an ENT specialist after 3 weeks.i was given a hearing test which confirmed severe hearing loss and told that I will not get it back, This was hard to take in.
The ENT said it\'s very likely Labyrinthitis but need to do MRI scan to cancel everything else out which came back clear.

8 months on and the dizziness as gone but I still suffer from balance problems like being on a boat and also some days I struggle with vision, this comes and goes from week to week.

My hearing never came back and now in the process of having a hearing-aid fitted, which I\'ve already been told may not be powerful enough to restore any hearing I have left.
I now suffer from anxiety when being in loud areas like a supermarket, bar or restaurants. This drives me crazy forcing me to leave before I lose my mind, and I\'m sure this makes the balance problems worse.
Someone mention about trying Craniosacral Therapy which I\'m enquiring about at the moment, and I\'ve just started taking Ginkgo Biloba which I hope helps.

I just want to be normal again, will it ever get better?

Sean


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January 18th 2020
06:54:12 PM
What is your name?  

Helene

How did you find this website?  

Google

Where are you from?  

Cockermouth in Cumbria

Please enter your comments.  

Hi l had labarynthitis in November 2008 and it took me until January 2009 to get over it enough to return to work However, since then my ears have been really sensitive to the point l get woken up during the night if l sleep on my side - l have tried so many different types of pillows to try and help but to no avail l cannot wear ear pieces either inside my ears or headphones on the outside of l use the phone - mobiles are the worst - l have to keep swapping ears Also tight hats that pull over my ears start to make them throb after a short while
Has anyone else experienced this ear sensitivity after the infection has gone? And can you offer any help at all? Thanks

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January 11th 2020
09:18:41 AM
What is your name?  

Jo Clark

How did you find this website?  

My friend who is suffering from this sent it to me

Where are you from?  

UK

Please enter your comments.  

Hello
My best friend sent me a link to this website and she is so so thankful she found it. She is 7 months pregnant and has had this for the last 15 weeks! I was wondering if anyone else has had this whilst pregnant and if once the baby arrived and your body was your own again was there a improvement? Thank you for reading and I will be so greatful of any replies or even suggestions to other sites that have pregnant sufferers stories. Jo xx

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December 29th 2019
11:39:31 PM
What is your name?  

Brian

How did you find this website?  

usual search engine

Where are you from?  

Chicago, IL, USA

Please enter your comments.  

Thanks for this website--it\'s one of the best sites devoted to labyrinthitis I\'ve seen.

My labyrinthitis journey started in May 2019 with a general feeling of strangeness and derealization and also acute tinnitus. Then, a month later, after just getting used to the persistent ear-ringing, I woke up dizzy, as if I were still slightly drunk from a night out drinking. The only thing was, I hadn\'t drank the night before.

I thought this would go away after a day or two, but I also worried that it was somehow a worsening of whatever inner ear condition caused the tinnitus. I went to the doctor, and she prescribed some Prednisone and Meclizine, which had no effect. She mentioned nothing of labyrinthitis or vestibular neuritis, though she did eventually suggest VRT.

A week went by, and the \"being on a boat\" feeling and the nausea and brain fog carried on. I did what I was told not to do, which was google my symptoms, but I did find out about labyrinthitis, the symptoms of which very closely matched what I had experienced. It was a relief that I could apply a name to my symptoms. (I wish I had discovered this site early on!).

About a month of daily VRT exercises helped quite a bit, and so did just being out in the world. I was at I\'d say 80% or even 90% of my normal capacity, which seemed quite an accomplishment since I was almost incapacitated when the symptoms first manifested.

Now, 6 months later, the symptoms have returned with a vengeance after a couple particularly busy months at work during which I let my VRT practice slip and didn\'t take good care of myself (too much caffeine, no exercise, use of alcohol). I\'m hoping that this recent spike in symptoms, now about 10 days in, will subside.

Good luck to you all, and thank you, Emma and Isla, for this site.

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December 8th 2019
09:12:59 PM
What is your name?  

Trish

How did you find this website?  

Browser search for labrinthitis + itchy ear

Where are you from?  

Australia

Please enter your comments.  

This website is excellent, thank you so much. I had labrinthitis a few times over 10 years, always when overworked and always fully went away after resting. This 3rd time it kind of went away but still had slight symptoms, 2 weeks ago I picked up a virus and everything evolved into all the other symptoms you mention. Overheated, dizzy, noise sensitive, weird vision, memory problems, etc. I went back to dr and was diagnosed with BPPV but that didn\'t feel right. Finding this page now, everything makes sense. I\'ve also had doctors not take seriously how debilitating it is. Luckily mine is not severe, I hope with rest and healthy movement it will abate again. Thank you for this great information.

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