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Living with dizziness

(37 Posts)
Miggs28 Thu 27-Feb-14 12:57:11

I was diagnosed in October 2011 with vestibular neuritis which caused a lot of damage to my inner ear, after lots of testing (MRI etc.) I was given bethastine at first to manage the dizziness and then physiotherapy, the dizziness lasted for about 7 months. Things then went back to normal and I went on to have my DS who is now 9 months. The dizziness has now returned after a particularly bad virus, I have been to see my GP who has prescribed Cinnarizine to treat the dizziness and has told me to start my VRT again.

Does anyone else on here live with dizziness?

Do you have any coping strategies that might help me, especially with my DS!

hatebeak Thu 27-Feb-14 19:54:20

I'm sorry, I haven't, but I've had the same on and off since October 2011 as well - clearly a bad month for vestibular neuritis! I've never been totally flattened with it, but I've had really long periods where it's there all the time, like being slightly drunk, and it's horrible. I just wanted to say you have my sympathy, even if I have no ideas how to improve it. (I know I feel worse when I have less sleep, but saying "get more sleep" to people with small children is kind of pointless.) Good luck, though.

awaywego1 Thu 27-Feb-14 19:58:48

I've had labyrinthitis since December which is a such a short time compared to you but am really struggling especially as I already have ME. have you tried other drugs other than betahistine? I also have prochlorperazine which seems more helpful but its really hard to live with. maybe trying to identify triggers and manageable levels of activity might be helpful.

Lauren83 Thu 27-Feb-14 19:58:57

Have you both tried Prochlerperazine? X

Lauren83 Thu 27-Feb-14 20:01:54

Think we both posted at same time! I had it for labyrinthitis that turned out to be endometriois oddly x

Miggs28 Thu 27-Feb-14 20:25:50

I think the main trigger for me at the moment is being tired and run down. I have had my DM here and also my DH is taking a day off tomorrow so I can rest and get over this attack. I think I'm going to give the Cinnarizine a try for a couple of weeks and see how that goes.

I do think a lot of GP's and even ENT specialists struggle with dizziness and diagnosis, I found my journey to getting over the constant dizziness was a real battle. I just hope I'm not starting it over again!!

Right off to do my VRT......

awaywego1 Thu 27-Feb-14 20:30:24

I really feel for you op. I'm going to have to return to the gps next week as if now been Ill for nearly 3 months and am still really struggling..I imagine in going to be fobbed off or go through some drawn out referral process which isn't going to provide any real answers.
I think like any 'invisible' illness its helpful to try and talk to people about what you are experiencing in order to get a bit more support..I think its hard for other people to get it.

I can completely sympathise with you. I had labyrinthitis 3 years ago and the dizziness has always stayed. It isn't nearly as bad as it was but I have lots of bad days still. Today is one of them. I get lots of pressure behind my eye too when I get it and vision is blurred. My eyes have been checked and are fine.

I have seen many doctors who just cannot find what it is. I am so frustrated and keep thinking I will feel like this for the rest of my life and that really pees me off.

Lauren....what did you mean that yours turned out to be endo?

Snufflebabe05 Thu 27-Feb-14 22:04:42

It is so nice to speak to others who understand what I'm currently battling with.

I am on a 12 week waiting list to see the ENT clinic but have paid to see a private specialist as my dizziness is so bad. He diagnosed vestibular neuronitus.

The floor bounces with me and my vision isn't as sharp as I feel it was.

I do balance rehabilitation exercises, which I think have helped but I just wonder if this will ever go away completely. It's affected my confidence.

I have a toddler and a baby and I feel I'm always running at 50%.

It's shit. I get frustrated and cry a lot as I feel like it's never going to go away.

Lauren83 Thu 27-Feb-14 23:16:55

Hi richtea

Well I presented with symptoms of labyrinthitis, dizziness and nausea etc, it was so bad I lost 2 stone in a few months, was put on meds then I got diagnosed with endo as we had been trying to conceive for years, the hospital said it was more likely sympoms of that, I had a 15cm cyst amongst loads of other issues and the nause/dizziness was linked to that, it was so bad though I couldn't go anywhere without clinging into something x

ThatBloodyWoman Thu 27-Feb-14 23:19:25

I did for a few months, and you have my sympathies.
I was lucky that VRT did work for me.

Just simple things like hanging out washing had got really hard.

ThatBloodyWoman Thu 27-Feb-14 23:21:44

I was told to be very careful to stay hydrated to help the dizziness (and avoid stress and get enough sleep)

Snufflebabe05 Fri 28-Feb-14 06:51:00

I'll up my water intake to see if it helps. My private doctor told me to cut down on salt too.

Does anyone else have any tips?

Snufflebabe05 Fri 28-Feb-14 06:56:23

I also struggle with supermarkets and shops, soft play. I don't know what it is that triggers it though, whether its the lights?

The best I feel is when I'm outside pushing the buggy.

When you get an 'attack' do you find doing your balance rehabilitation physio helps straight away?

Miggs28 Fri 28-Feb-14 07:43:41

I found that my dizziness did go away pretty much completely doing the rehabilitation exercises - although strip lighting can set it off if I'm particularly tired that day and I don't go to the cinema or concerts anymore.

My doctor has advised that I started them again for this attack so I'll keep you posted on how quickly they help!

I know how you feel Snufflebabe with trying to cope with young children at the same time it's really difficult!

Miggs28 Fri 28-Feb-14 08:07:04

I've just discovered I can't watch my DS in his jumperoo sad

This sucks! Just taken my medication so hopefully in 15-20mins I can be fun mummy again!

ThatBloodyWoman Fri 28-Feb-14 08:18:06

I went to a hospital dr for my vestibular rehabilitation.

He did a few odd twists and turns with ny head, and said it may take a couple of days for it to settle.

After that I was absolutely 'cured' and it never needed repeating.

Absolute bloody miracle imo.

Lucky my dc's weren't tiny when I first started suffering,so less bobbing around all the time.

I found looking up, and turning over in bed the worst.

Like the spinning feeling when You're pissed,but without the fun.....

KnightMare Sat 01-Mar-14 18:06:55

I have periods of benign paradoxical positional vertigo, having one at the moment that's lasted a couple of months. I struggle with looking up and turning quickly. I can't seem to get rid of it so have kind of adjusted my movements to compensate. Hate it.

ThatBloodyWoman Sun 02-Mar-14 16:56:00

It was BPPV that I had too, Knight.

Maybe tou could ask your gp to refer you for vestibular rehabilitation?

Snufflebabe05 Fri 07-Mar-14 09:56:35

I finally have my ENTappt tthrough. End of March. I

How are you all feeling? I saw a new physio yesterday who specialises in my condition. I have new rehabilitation exercises. I don't feel like im making much progress, dizziness wise. How do you all stay positive?

Snufflebabe05 Mon 17-Mar-14 09:58:33

Bump. It was really good to hear from others who were battling with this awful condition.

1966gettingold Mon 17-Mar-14 13:43:43

I have BPPV to have had it for 27 years the longest it lasted was a whole year, I paid to see one of the top balance consultants in the country he did the Epley manoeuvre went immediately, also when I have an attack I do Brandt Daroff exercises as told by him to do, also the other exercises you mentioned. He didn't give me any medication as he says it is a short term fix and the brain needs to relearn how to balance through the exercises. Stress and tiredness definatley makes mine worse. My first bought happened after a fall off a horse when a teenager.

Snufflebabe05 Mon 17-Mar-14 20:47:10

What was the name of the balance specialist 1966?

Snufflebabe05 Sat 22-Mar-14 17:36:18

Bump again.

AimeeDubucqdeRivery Sat 22-Mar-14 20:39:45

Coming late to this thread.

I've posted on a couple of threads before about my dizziness.

I was dizzy for more than 4 yrs before I found a dr who helped. GPs weren't great, ENT specialist was rubbish, really disinterested.

snuffle I was like you in terms of triggers. Couldn't go into supermarkets etc, much better outdoors.

I found out about a Dr called Dr Surenthiran, who lots of people raved about online. I saw him privately locally and he diagnosed a migraine variant balance disorder. I was put on a special diet, given vestibular rehab exercises to do and put on pizotifen. I'm now on propanolol instead for migraine control. I am soooo much better now.

Dr Surenthiran is IMO fantastic. I went from being permanently exhausted, dizzy and nauseous to almost normal again. I would recommend seeing him over others if possible because he, from what I've read online, is the best, and has transformed so many lives of people with unexplained/chronic dizziness.

He works out of Medway for the nhs, but also runs private clinics in London and Tunbridge Wells.

I found it really hard to stay positive as the dizziness went on so long. I coped by napping when ds2 and ds3 did, by pacing myself, and by trying to take pleasure in the little things. It was v depressing though.

thanks for everyone struggling with dizziness

AimeeDubucqdeRivery Sat 22-Mar-14 20:44:43

PS I was misdiagnosed as having labyrinthitis when it all started.

DumbleDee Tue 25-Mar-14 19:33:05

On my 2nd bout of Labs (or other yet to be confirmed). The best source if info that kept me same the first time around is wwww.dizzy times.com. Massive source of info and a specialist consultant posts on there.

Awful- I can empathise. Mine turned out to be related to migraines which noone picked up on. Vestibular migraines- I suffered for years and thought I was going mad.

AnnField Tue 25-Mar-14 19:39:03

I've suffered on and off since 2008 when I had labyrinthitis. Bright lights and being tired/run down seem to bring it on. I know this sounds terrible but I'm glad there are others who have this problem!

That sounds like migraine Ann- bright lights and tiredness trigger mine.

DumbleDee Tue 25-Mar-14 20:31:36

ann my Labs in 2007 left me with "heightened autonomic response" hyper sensitivity to certain lighting which send me dizzy, patterned carpets made me feel drunk.

It's tough because most GPs don't know much about it all and people that have never suffered do not understand how debilitating and scary it all is.

AnnField Tue 25-Mar-14 20:35:07

Travis, it does but I get migraines too and they're different! Very odd!

Dumble, that sounds very like me. Rubbish isn't it.

I get both types of migraine. Greedy me!

hennipenni Tue 25-Mar-14 21:16:38

I have suffered with BPPV for the past 7 years, not sure what caused the first episode but I constantly felt like I was walking into walls (which I wasn't) or on a boat in a storm when I turned over in bed etc. Each bout has got easier to deal with, probably because I've learnt to compensate with my movements. Stress and tiredness definitely make it worse and plenty of little things can make me feel dizzy during an episode - each episode usually lasting a couple of months.

it's good to know that other people who suffer from it know how debilitating it leaves you.

shewhowines Wed 26-Mar-14 08:53:44

My dd, who is 13, has silent migraines - probably. They have tested her heart etc but can't come up with anything else. She is regularly dizzy and often loses her vision for a few seconds or her vision is distorted.

I'm just worried that she will never be able to drive - especially with the vision problems. Do you all drive with the dizziness?
Have any of you noticed a link with your hormones? There could be a link there, but not an obvious one.
If she has a cold or is ill, the dizziness gets worse.

It's good that its being recognised early. I spent most of my teenage years having strange experiences that I thought were my own weirdness eg Alice in wonderland syndrome with distorted size. I drive and have never nor driven. I find hormones, tiredness and stress are major factors.

shewhowines Wed 26-Mar-14 16:48:59

Oh shock I was hoping she might grow out of it.
I'll have to google vestibular migraines. The neurologist only mentioned silent migraines as she doesn't get a headache very often.
Thanks

thanks for everyone else coping with the dizzyness. It isn't pleasant is it.

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