Just wanted to update everyone so far of my condition. Ive been suffering now for about 2 - 2 1/2 months, and just as I thought I was getting better.. I start feeling like crap again.
It went away for about 4 days or so and then its come back with what Id say was a mild vertigo (the spins) feeling and some mild to moderate nausea, which I think is perhaps one of the aspects which makes labyrinthitis/vestibular neuritis so difficult to cope with. Ive noticed quite a few people saying just how dehabilitating it is to suffer with this, as to everyone else it looks like youre fine, but you feel just the worst inside!
Ive been really hesitant to post anything on here, as I dont want to sound annoying or a hypocondriac. But I would love support if anyone could post something below.
I keep on trying to tell myself that its going to get better, but I have asperger syndrome and anxiety, which really makes it ten times harder to settle my mind down when I feel petrified of the sensations with it. I believe I more likely have vestibular neuritis, however I havent had any diagnosis for it in person. I seen a GP online, told him everything I was going through and he said I was suffering an inner ear infection, and that I should visit my GP in my own town to get some medication for it. I havent though of course, because medication they give you slows down the compensation process.. so
I dont know what else to do really. Its starting to really get to me because I start a university course in 3 weeks, and Im going to have to do a bit of travelling with it, which seems to aggrivate it for me.
I start to get the tired eyes, mild spinning sensation, slight full forehead feeling etc when Ive eaten ice cream. My theory is that the body is having to raise its overall temperature to bring the food to body temperature so
it can digest properly, and by raising it up, the inflammation kicks off the vertigo by making the inner ear warmer. I dont know if thats right, but it seems anything which raises body temperature to a certain level is when the vertigo kicks off.
Also.. when I was doing a little shopping with my girlfriend a few weeks ago, I lent down to get bread from the bottom shelf and I started feeling like I was going to fall right into the shelf! and then as I walked down the aisle a few minutes later it looked like the world was all warped and moving around everywhere. Really hard to keep my balance, which is already hard enough as it is with my disability. Also.. I experience some tinnitus in my right ear each day which only seems to last a few seconds and fades off.
Ive been wanting to try the dix hallpike manouver to
check for bppv, but I read somewhere (cant remember where.. but if anyone has a link I would really appreciate it) that you should exercise caution to doing the epley manouver if youre at risk of stroke or a few other things as it could lay upon some kind of nerve or something and cause a stroke to happen? Seems pretty scary! Is there any truth in this? is it safe to try the epley manouver at home? I did experience nystagmus with the first really bad attack of vertigo, which seemed like my eyes were rotating around by themselves or ticking to one side as far as I can remember. I felt like I was having a seizure or something.
sorry for the long post.. been keeping it back so as not to
sound negative in front of people searching for hope on the condition healing quickly.
Poor you ! things just sound awful for you and I wish that I could help in some way .
My symptoms are similar but not the same as I do not have the spinning thankfully just the feeling of constant unbalance when walking etc now ! I am attempting to go out this afternoon with a friend in tow lol to help if I feel awful when walking and have to admit I'm nervous but feel i need to keep trying to adjust to these symptoms as fear there going to be around for some time yet (on week 6) and by others posts its going to be months,I am hoping to get back to work asap and hoping they will help me in some way to achieve this.
As for the Epley manoeuvre I have read about it but am unsure whether to give it a go or not as sounds scary lol.
Fingers crossed things improve for all of us asap and people continue posting there experiences with specialists etc.
Thanks for the reply. This thing leaves you feeling so alone.. it's unbelievable.
I also now have that feeling wobbly type feeling too, constantly off balance. I hope your day goes well out with friends, I'm sure you'll have a good time. I also feel really tired most of the time, and tend to have a bit of a temperature too, especially when feeling the mild vertigo.
I noticed if I walked alongside my partner on her right hand side and held hands with my left hand, I felt like I was going to fall over. The same happened holding the roller basket at the shop the other week, I was walking it along the aisle with my left hand. As soon as I swapped hands, I could walk somewhat better. I don't know if this is something to do with the eyes compensating with the ears, but I hope it gets better for us all soon.
Just like Aspergers Syndrome, Labyrinthitis and Vestibular Neuritis both are hidden disabilities, and it really gets to you when others cant see what's wrong, because its all internalized.
I did try the Dix Hall-pike test on my left ear, and nothing came of it. I'm a bit scared to try it on the right ear. One exercise was like a roll your head around clockwise in a circle motion and do that 10 times, then swap to anticlockwise motion. I tell you, it was pretty vertigo provoking last time I tried it. lol. I don't know if I should keep on trying it, because I think its supposed to provoke the vertigo and symptoms so as to help compensate for it. I'm a bit weary of trying the Dix Hall-pike on the right ear, as this is usually the ear which causes the problems with me.
Anyway, have a great time with friends, and be sure to tell me all about how it went
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So I managed to get out with my friend yesterday to the local town woooo hoooo !
I walked the furthest I've walked in 6 weeks and without holding onto anything or anybody !It was a bit tricky at times and I was walking very slowly but still did it.
Today wasn't such a good day as yesterday as was more unsteady but wanted to try and get out again so i drove to the supermarket and went in to buy 2 items ! I did manage it but felt very unsteady and couldn't get out there quick enough lol,so hey hoe small steps as they say.
Hope everyone is ok.