Non-surgical Treatments for Nystagmus:: Rebecca McLean
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- Опубліковано 4 жов 2024
- An overview of the literature around many non-surgical treatments that have been recently attempted with Nystagmus patients. She discusses treatments that have been used for both infantile and acquired Nystagmus as well as their reported efficacy as the case may be as well as treatment options weighed against various quality of life criteria. These themes include standing out, restriction of movement, restriction of social movement, feelings about the inner self and self-confidence, thoughts about the future, effect on relationships, and physical impact.
I have nystagmus by birth. I am 25 now and my eye moment is now very slow as compared to young age, I used to wear glasses when I was around 10. then my doctor seggusted to stop wearing it because it has no effect and your eye sight has no such changes
and he seggust me to play video games like shooting games etc because then my eyes can focus more. watch tv from the position you are comfortable, in child ae i was use to sit like so near the tv but now i can easily read headlines from siting on sofa. :)
I am Studing Masters in Informatiks in Germany. I have done Software engineering and I am also working for few years now.now in Germany i think i wont get driving licence but In my home country i just got the driving licence somehow, and i have been driving from 17 , and i mostly don't have no problem, unless I have to read something
because then i Have to focus more than normal people,.
In my 5th class or younger I had very difficulty to read or see anything on board from 1 meter in class, but now I can read from 3-7 meters the same thing on board.
The worst things some times i get annoy is cant be able to read like normal people like from relax neck position away from screen or use cell phone close to face,
I have faced many times disappointment but i always kept myself positive
o and the worst thing i hate is the head movement, like when i am writing or reading or basically using my eyes for something, now its way to slow then early age. and people really noticed from this
Just some seggustion,
- regular get your eye sigh check, if no different, dont wear glasses, because glasses is no solution for it, may be lens would be because it directly attached to eye, but its hard for us to control movement. my eye sight got better naturally by age,
- play games, watch tv, do sports where you have to focus.watch from the distance you are confortable even so near ,
- be positive
Ahmed Sunny ich habe auch Nystagmus, ich bin 22 Jahre alt, ich kann mit Brille 40% sehen, aber ich habe immer Angst wenn ich mit Menschen rede, ich bin sehr oft in Panik wegen des Nystagmus , kannst du villeicht mir Tip geben, wie hast du es geschafft, damit umzugehen??
Sorry, mein Deutsch ist nicht so gut.
Ich wurde auch sehr nervös, aber wenn Sie gute Freunde haben, Kollegen, die Sie normal behandeln, dann bekommen Sie das Vertrauen.
Ja, eine Sache, die ich wirklich habe, ich kann mit niemandem von Angesicht zu Angesicht sprechen. Es ist so nervig.Ich habe nie mit Nystagmus gesprochen oder jemanden getroffen.Wenn Sie darüber sprechen wollen, können wir es mit jemandem teilen, der es versteht.
Sie können mir eine E-Mail schicken, wenn Sie mögen: rockysunny2@gmail.com
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i also used to get very nervous, but if you have good friends, colleagues, who treat you normal, then you gain the confidence.
yeah, one thing which i really hate, i can't talk to someone by eye-to-eye. its so annoying.I never talked or met anyone with Nystagmus. Would be better if you like to talk about it, We can share experience with someone who understand it.
You can email me if you like: rockysunny2@gmail.com
Juliet C hi, i started driving at 17, i think i learned it quickly because i like driving, yes sometimes its really difficult to calculate distances especially when parking in tight areas, etc and because i didn’t had any driving assists in my car, on the road its not that difficult for me , but sometimes when i get stuck in traffic situation(in Pakistan, not like europe) then i had some issues but at that moment i never felt it, but later and now i am thinking yes i had it but i just took risks,
But now i am Germany, and here the traffic and cars are very well managed, and with many assists in your car , i think it would be easier for me to drive here when i will get license.
Juliet C and sometimes i feel it more because when i see my friends and other drive through some situations easily,.
Its better to use GPS , so you know before when you have to turn, because i found it difficult to read signboards while driving ,
And its better if your car have rear view cam for reverse and parking and other sensors, there are also side mirror sensors which blinks when there is a car on your sides
I think for us these things are really helpful.
Thankfully i never had any serious accident or any collision because of my eyes, all small collision or something were due to other mistakes or one time i was using phone while driving 😜
Juliet C just be confident and dont think about it while driving, take risks
But if you have very weak eyesight then drive slow and carefully because glasses doesn’t help us
If you need more info let me know 😊
I have nystagmus since birth
How i free from nystagmus??
Am very upset i go every where for the treatment but no result
I think my 2 months old bby girl habe nystagmus. She's also have radial club hand on left side
If there is no treatment for Nystagmus
then don't say nothing,, just organize any conference,, if no hop then why people talk.
I have acquired nystagmus since year ago, so far I've tried few things and I found that cannabis oil helps a lot. It didn't cure me but it does significantly reduce my photophobia which I developed because of nystagmus, for a while I couldn't even walk normally during the day, the light was just too much for me. I wouldn't be able to write this comment if I didn't take cannabis oil. It also reduces the eye movements. Too bad it's illegal, and I have to get it illegally, but I plead to anyone from the medical community, doctors and others, seriously think about initiatives to legalise it, because it seriously helps. And I don't think on the usual cannabis oil which can be bought in shops, but the one made out of marihuana tops, you can google Rick Simpson recipe. I hope that someone will benefit from my experience, thanks for posting this video.
Stanislaven100 where can I get one from ? How did you apply it mate?do you add drops? Swallow it ? Please let me know
Stanislaven100 when I take weed I notice a improving of my nystagmus, too. I never tried cannabis oil Aor Rick Simpson Oil. What is your experience?
what strain of oil
I have infantile nystagmus. For me the thing hardest to do is read at night, or play any sort of sport because of hand eye coordination or just seeing the ball in general. I wanted to get LASIK but I had forgotten that for LASIK your eyes have to be still while looking at the laser and that is not possible for me.
You can do LASIK with Nystagmus. The laser can follow your eye movement.
Gabapentin aka. Neurontin is about the only treatment medicinal wise that does the trick. It saved my life. look into Billberry extract 250mg 2-3 times daily helps with the night vision.
Gabapentin aka. Neurontin can slow your movement down enough along with help null point to allow lasik to be possible.
Its possible for nystagmus
Does Neurofeedback could be useful for the congenital nystagmus treatment?
Hi .i just want to know if there still a chance my eyes will be come clear again i'am now 18 years old and i have nysragmus since i under go with the head surgery when i'am 6years old because i had hydrocephalus
We need real help . I have two have nystagmus abd both suffer from sever headache .It is a stressful movement and needs high effort to focus ... is there any exercise or medication that can help.
ask them to focus from there best point, even if the sit 1 feet away from tv or , or reading book too closely. don't force them to read from far, which is impossible for us.
and let them play games which require focus, espicailly video games, and the headache is because of eye sight also, just get them check for eye sight and ask doctor for best number possible , because in nystagmus, you cant wear a glasses and see like normal, like i have weak eye sight, and i used to wear a different number glasses then a normal person with same weak eyes. even with glasses its not good, but it helps a little.
Cbd oil?
Kindly help me my daughter 9 years old suffering same problem
My doc prescribed cogentin. It helps a bit...
What did he prescribe you can u tell me
@@mahveenfatima9923 its called Cogentin.
Is it useful
I am very depressed by this problem
@@mahveenfatima9923 my nystagmus stopped completely but apparently it was due to another medication I was taking. I would ask to speak to your doctor if you can change your medication if you're on any.
If not then yes the cogentin seems to reduce it a bit.
Correct me if I'm wrong, are you saying we should prescribe base in prism to simulate divergence for nystagmus patienst?? I don't think that will elicit a convergence response.....
It's confusing since base out is used for esophoria and esotropia. But if you overcorrect anyone with base in prism, it will make them eso-. Similarly, if you overcorrect with base out, you will make anyone exo-. Try it on yourself to see!
Please Mem I want to know about treatment for nystagmus (by birth)
Unfortunately there is none. There are some other treatments but they are not effective. They dont fix it like other mediacl issues
I see many people land on this video when searching for nystagmus. So if you are one looking for info or help or have some questions then join facebook group.
NYSTAGMUS NETWORK
facebook.com/groups/nystagmusnetwork/?ref=share
Also anyone from Pakistan, India, or urdu speaking can send me an email, i can help you with whatever i know and i can. I cannot share my phone number here.
rockysunny2@gmail.com