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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!

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.

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 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.

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.

I get both types of migraine. Greedy me!

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.

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.

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

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!

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.

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.

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

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

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

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

Bump again.

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

What was the name of the balance specialist 1966?

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 09:58:33

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

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?

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?

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 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.....

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!

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!

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?

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?

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