Looking for descriptions of your vestibular symptons
Posted , 4 users are following.
I have had vestibular neuritis since April. Came on very suddenly. I've been given vestibular physiotherapy , it's working , I think, but very slowly. I am functioning but dizzy. Crossing the road, stairs, sudden movements are all disorienting. One of my main problems is a feeling of being remote from the world, as if looking at it from the wrong end of a telescope, or through a pane of glass. I find my quickness of mind is affected, I forget words and feel disassociated from what is going on around me unless I make a concerted effort. My IQ and concentration levels seem considerably diminished to me. I've been asked to write an article about the condition and I thought I'd ask if anyohe else here has experienced similar symptoms? How would you describe them? ? What other symptoms have you experienced?
0 likes, 10 replies
Monkey16 nicola41728
Posted
I have been off work for 3 months initially with what was diagnosed as labyrinthitus.
I am left with a constant 'spaced out/drunk feeling' 24/7 like it's somehow not real.
I have seen a private ENT consultant which cost me £250 and he said it could either be anxiety or vestibular nuritis/poor compensation. He recommended I have proper ear testing caloric ect but it's £450 and I can't afford it.
nicola41728 Monkey16
Posted
thanks very much.I know that not all vestibular problems are the same. For what it's worth, my own exercises to encourage compensation - which I think are the ones prescribed for many people, judging from what I can find on the internet - consist in walking slowly, barefooted, towards a target (Ie a post-it note) on the wall, keeping eyes on the target and moving head from side to side. Then the same thing with head moving up and down. Seated, putting my thumbs up in front of me with arms outstretched, about 3 feet apart ,and turning my head to look from one thumb to another. Holding out a card at arm's length, with something written on it (like a business card), and moving head from side ot side while keeping eyes on the writing on the card. All for a minute.
Another one was to sit on a chair with eyes in front, then, leaning forward and looking down, leading with the head, to pick something up from the floor, slowly. Then come back to a seated positoin. That was interesting because it was horribly sea-sicky at first and then quite soon ( in about three weeks) became easy to do. If you are wondering if you have the same thing as me, (vestibular damage) you may be able to find it out by doing that exercise for three weeks and seeing if it gets easier. The Physio tells me it's the one that sees the quickest improvement in most people.
Obviously these have been prescribed for me, but may be worth having a go?
Monkey16 nicola41728
Posted
Thanks Nicola.
Might be worth giving it a try - I am trying to keep active I have been doing some decorating around the house - I don't seem to notice any particular movement makes it worse it's more like a constant - almost as if I'm low on sugar or something like that (which I'm not) after I have been active I am very tired afterwards and my eyes are heavy.
I never had true 'spinning vestigo' at the start more like extreme disorientation like I had sank a bottle of vodka this lasted maybe a week.
nicola41728 Monkey16
Posted
if you do , it's worth noting that they do often make things worse before they make it better. That's what the Physio said would happen, and it did. Good that you can do a bit of decorating though with no ill effects - that involves a lot of moving your head about.
Laurie34 nicola41728
Posted
Your description is like holding up a mirror. I struggle sometimes for the correct words. I feel like I'm viewing life through a lens. It's a horrible feeling. The pulling sensation in my brain as it is trying to figure out where I am physically is beyond disconcerting. And the exhaustion by the end of the day. It's sensory overload.
Monkey16 nicola41728
Posted
Have you diagnosed ?
Laurie34 Monkey16
Posted
sandy43753 nicola41728
Posted
Hi Nicole
My 12 year old son got sick very suddenly in April as well, we took him to Childrens Hostpital ER where they ruled out major issues and sent us to see the vestibular/balance specialist. Unfortunatly he was not able to see the Childrens Hospital vestibular/balance specialist till June (due to his age most other specialist wouldn't see him and that was the 1st available apt) In June he was diagnosed with VN and BPPV (Very rare for kids to get). The positional vertigo was resolved with the head manuvers. He started PT right away and it has helped but its been an extremely slow process (PT also had to help with overall body strength since he wasn't able to move since April). He was able to start walking on crutches. By Aug he mastered walking on the crutches, but still couldn't stand for more than 30 seconds. He describes it as being more light headed and walking on a trampoline (no spinning or dizzy). He does tend to get headaches after going into a mall for too long but strangely enough he can do roller coasters without issue. He also can swim without problem as long as the water is high enough to help balance him. I think his concentration has been impacted but its so tough to say about a 12 year old
. We've been back to the DR several times and they feel that his congenital nystagmus has significantly delayed his recovery, they've never seen a case of VN plus nystagmus.
As of today he is still on crutches (still can't stand for more then 30 secs alone) - he has mastered using only one crutch around the house and is back at school full time. Next week his PT will be using a VibroTactile belt (normally used on elderly for balance issues) to see if it will help speed up his recovery time. Fingers crossed!
Good Luck on your article!
Laurie34 sandy43753
Posted
Be sure to get him in vestibular rehab. The exercises are simple and can be found on the internet. They help tremendously with vestibular neuritis. It's a VERY slow process. It's so incremental it feels like forever. I'm a year in and I'm still recovering. But I am getting better. It takes time and effort. Some days he'll feel good and there will be regressing and then progress again. Don't get down on the falling back days. Even though it's so very hard. Make sure he keeps at it. It does help.
sandy43753 Laurie34
Posted
Yes - the PT is vestibular rehab and has been going for 2hr a week since he started PT and we also do it an hour a day at home. Having nystagmus just slows recovery more since he can't focus on an object normally.
Glad you are getting better! Yes I am making sure he sticks wit it! He is a hockey player and I would love to see him skate again!