Oscillopsia Support | Website
Oscillopsia Support
Phone: +61 428 172 717
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23.01.2022 Our support page is getting a lot of views and our O.S.Group member numbers are growing. Im surprised to see a steady rise each month. Only 2 years ago i knew no one now we are 3 dozen members strong on the "Oscillopsia support page" If you suffer this condition Search and request to join after all the page is there for you. There is an open ear happy to hear from you, response is usually quite prompt. ... happy there is still a lot to smile about even if your world does bounce before you. See more
20.01.2022 Sorry to everyone first and foremost, I just have to vent. I am having a very bad week, between not sleeping and headaches sometime I just do nothing because everything is a struggle. My family had a birthday celebration for my oldest daughter last night I could not stay very long to many people and to much noise does this bother anyone else? I need to have calm and quiet. I felt like my head would bounce off my shoulders and my eyes did not stop moving. It is allergy season for me and we got a lot of rain last night does this affect any of you my friends. I know it could be a lot worse and it is not terminal but I sure wish research could help us. Thanks for listening and everyone have a wonderful Easter. Judy Lerch
18.01.2022 I read a post this morning it really breaks me to see another lovely person post up how much they are struggling. Im hearing you Janet. There always is someone worse than me, An maybe you! A little girls mom put a post up in our group, her daughter has had "Oscillopsia" All her short life, she knows no different, take her struggles in her stride.... We loose what was perfect vision, we once took it for granted. However we still see colour and sunlight. The blind can not Darling I know its not much but "YOUR GOING AMAZING" Rest like you do to cope and make the most out of what you can achieve. I sleep more than im awake. Its how I cope and possibly many more of our members do the same. My best friends Very ill, we will be here long after shes passed. We are a bit broken but we owe this to the lost ones we Love. Smell the Roses, Love, Laugh, cuddle and enjoy the warmth of the sun that which we can still do. When we are surround by darkness We Are and see ALL the SAME. Cherie Greaves 29.01.18
18.01.2022 Dont let OSCILLOPSIA Own you. Dont let it take away who you are. Let it give you strength to over come the lesser challenges in life. Challengers that others see as "being too hard".... If only they new how difficult your day was. Just to walk straight To spot a familiar face in a crowd. To drive a car! To be able to identify a passing bird. Ive been lost. That vulnerable moment where your to scared to move. It made me stand strong, I laugh when things get TOO difficult. You can't fall any further than into the arms of mother nature. We are alive, We can smell We can Feel and we can Hear. Dont give up on the positives Focus on them. Enjoy this beautiful world and stand strong for others. These are pictures from my world: Theres a lot of beauty still to be seen through Oscillopsia.
17.01.2022 I have such a bad memory when im busy under pressure or trying to multi task. Family or big gatherings can drain me so much, i suffer fatigue or even a migraine the next day. This information found on the internet under pubmed saved my sanity as I thought I was suffering Altzheimers.
11.01.2022 Met a lovely lady today right here in my Aussie back yard who was diagnosed with Oscillopsia this last week. A surreal moment when she acknowledged knowing what I had. I don't think she had any idea how rare it is. Any way I'm hoping Vicki Collins joins us soon. It's the greatest feeling to be there if in need. It was a lonely space to be in when I was diagnosed. Wish I new how to make this page more accessible to new patients diagnosed with Oscillopsia Vestibularopathy.
11.01.2022 Passing bye and Looking for Answers??? HAVE YOU GOT BOUNCING VISION ... WOBBLY WALK LOSS OF BALANCE FALLING FEELINGS NAUSIA VERTIGO MEMORY LOSS THINKING DISFUNCTION UNABLE TO MULTI TASK NO ONE HAS ANY IDEA WHATS WRONG WITH YOU. WE DO WE UNDERSTAND. CHECK OUT OUR SUPPORT PAGE AND IF YOUR FEELING RELIEVED TO FIND SOMEONE WHO SHARES YOUR PROBLEM WE UNDERSTAND. GET IN TOUCH WITH US HERE SYMPLY BY POSTING A MESSAGE TO MY SUPPORT TEAM. WE ARE HERE FOR YOU.
08.01.2022 HOW TO JOIN OSCILLOPSIA SUPPORT GROUP: People with Oscillopsia and Vestibularopathy can become members of our private support group. ** Go to your face book page. Search at the top bar of the page, its in the blue, for "Oscillopsia Support Group"... Search It will come up with 2 options Click the Oscillopsia support Group it will open NEXT Click JOIN. If not I one of my members will Accept your request. WELCOME
08.01.2022 Hi peoples this support page is HERE FOR YOU if you have been diagnosed or think you may have "Oscillopsia" and or "Vestibularopathy". This page may link you to answers a general GP can't unless they have come across it during studies or practice. We need them and sometimes they need a light shone in the right direction from us. I have informed all of my GPS except 1 of this condition. It's rarely seen in general practice. A number of members here are sufferers that have ...researched there own symptoms for Answers. My advice; If you find this is what you have make sure your GP researches on it to give you the medical support you need. Even they are on a learning curve. I am on medication to keep anxiety at bay. I have tried twice in 11 years to come off it but the brain is under a lot of stress dealing with the disfunctions of balance and visual disturbance. By coming of my medication New symptoms occurred it was a no go. My personal advice keep the anxiety under control then depression and other things such as eye auras dont occur as i experienced. (Visual Ocular projections obstructing the centre of my view) On another note I have been checking through posts and must thank my team of supporters for helping our new members. PLEASE leave your name at the end of your post so we know who you are admin. I have a couple on admin cant always work out whos being the Gem, answering a cry for help. BLESS YOU FOR BEING THERE Its working the support is here. THERE MAYBE lapses in activity but this support page is our public point of contact. IF YOU HAVE OSCILLOPSIA REQUEST to join, search in face book: "OSCILLOPSIA SUPPORT GROUP" ITS FOR PERSONAL AND PRIVATE SUPPORT BY MY SELF AND SUFFERERS. WE HAVE WHAT YOU HAVE. OSCILLOPSIA SUPPORT and OSCILLOPSIA SUPPORT GROUP STARTED 28 th JULY 2015 because I was all alone. We have less than 25 members but we are no longer alone. be positive.
05.01.2022 Has anyone in our group been tested for binocular vision dysfunction? If you have has it helped with oscillopsia? This is something I just heard about through my doctor. Judy
04.01.2022 I look out side and see for the first time in ages a real down poor. This is what winter was like. Every thing hidden under a curtain of rain. It actually makes me feel comfortable nothing is distorted. I can escape for a moment and feel normal. This is something taken forgranted you might think its an obstruction that cloudy view. I love it.
02.01.2022 It's Oscillopsia Support Groups 1st Birthday Thankyou To you wonderful friends who found there way to my heart.... There is nothing worse than being : Incureable Untreatable Undiagnosed Afraid and Alone. We may not speak every day, week or month. But it's knowing each other is there Makes a whole world of Difference. Love to you all from Australia.
02.01.2022 OUR NUMBERS ARE GROWING AT AN INCREDIBLE RATE. SO HAPPY TO BE ABLE TO SHARE A GREAT NUMBER OF PEOPLE WHO COMPLETELY KNOW HOW YOU FEEL. WE ARE NO LONGER ALONE. JOIN MY OSCILLOPSIA SUPPORT GROUP INFO ON HOW TO BELOW. CHERIE
02.01.2022 Well as crazy as it sounds I rode one of our horses this week. Its a big challenge, adrenaline rush, an risky. But by gee its worth every bit. My hundreds of life time hrs riding are still fixed in my brain and like a lead weight I clung to my seat and enjoyed my self. I used a step ladder and helpers to mount and dismount, my daughter road beside me and dearest Laura in a support car behind us the whole two hrs. It was spinny my head and I did have a head ache at the back end of the ride, but I am mot deterred im gonna do it again. The bridal trail through the bush to the dam was awesome. Im determined to live my life to the foolest Oscillopsia and all. BELLA my mount is retired from the RFD, Riding For the Disabled, so I was on a trusty ole girl and she was fabulous.
02.01.2022 Do you suffer Oscillopsia I would love to hear your experiences with this rare condition.
01.01.2022 Its a beautiful spring day here in west Australia even though we got the last few days of August to roll the season over from winter. Just seen my Dr I ask every time with a smile, come on Arno got a cure for me yet? "I wish my friend" he said. We walk down the corridor and I bumped into him "Oops sorry" Laughing he said you my friend are fine I Understand and he placed a supportive hand on my back.... Acceptance is my only advice to day, I KNOWWW. Never gets any different. But knowing he cares and hes there and he UNDERSTANDS helps huge. I travel 2 hrs to see my Dr, Bessie my daughter drove me up this trip, a top up on the calming medication and back to serene country farm life. Just what the Dr ordered.
01.01.2022 Reaching out to find other people with our rare condition 2 members so far can you help us Dr Oz.
01.01.2022 Nice to see some likes from across the ocean. Welcome viewers, not a lot happens here but I patiently wait to find other people to share experience and treatments for this uniquely annoying side kick of a problem. Explaining to people about Oscillopsia is like introducing a foreigner. I did once again yesterday. It gasps people, how do you cope? Lol well for starters you have no choice. I do simply by focusing on life not the problem put before me. If I was blind and ...I had one wish granted to see clearly even for a short window every few minutes id take it. So things could be worse. I have my window, my way of coping, my sight. So not all is bad. Smile I say its a beautiful world if you look at it right. Those roses they smell beautiful. So stop to take advantage of them. See more
01.01.2022 These words are so true for us who are living with oscillopsia. I pray every day for God's strength.
