I Am Now Legally Blind…Because of IIH Idiopathic Intracranial Hypertension
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- Опубликовано: 5 май 2022
- The health update I wish I didn’t have to give! But I hope this video can help to educate you a bit on what blindness really means. Thanks for watching.
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My daughter everyone. One very proud mum to have such an amazing daughter ❤️
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She's certainly an "amazing young lady"!
Thank her for shsring. Thank you for supporting her. I have ideopathic intracranial hypertension and am going to see my neurological ophthalmologist tomorrow. Prayers and best wishes.
I am also an IIH friend 🧡 Also got diagnosed in 2019, also had opening pressures of over 70, and also had to wait a long time before being diagnosed and properly treated. Mine went into remission in December 2019… but it’s back. My eyesight is suffering at the moment - I actually just got back from the hospital and the Ophthalmologist has requested an urgent MRI and a Neurology appointment. Do you mind if I ask how gradual your sight loss was? And how you are doing now? Sending you so much love and best wishes. You have no idea how grateful I am for a video like this, as we are RARE😅 All the very best, Chloe, and thank you again 🧡
I have very similar symptoms. The doctors eventually diagnosed me with open angle glaucoma. My eye pressures were quite high (40+) and my optic nerves were/are very inflamed. The ophthalmologists had no clue as to why. I have neck and shoulder pain as well which is also a symptom IIH. I can no longer drive because of my vision loss and it is progressively getting worse. I'm definitely going to ask the doctors about this. Thank you for your video and I hope and pray the best for you and your family.
Chloe you are amazing. You have dealt with your condition with such courage and positivity. I know you have no choice but you have just got on with living your life no matter how difficult it must be for you at times. I hope future research will help you. I love your channel and feel it is helpful to be aware of your condition and the difficulties you face, it certainly makes me value how important it is to look after your sight. Continue to update and educate us. Bless you.
I came across your channel just before you got ill , I just want to say I think you are amazing and to send you love and massive hugs. 🤗🤗Xx
Thank you so much Carol, I really appreciate that xx
You are so brave doing this video and reliving in front of the world to educate us. Thank you and bless you xx
Thank you for sharing I recently found out I had IIH this past month. It was definitely a very rough month to get through and I finally got some relief from a blood patch. Stay strong and wishing you good health as well 💛 you helped me become more knowledgeable from your other videos we can get through this 💪🏾
Oh Chloe, you are so incredibly brave. Thank you for taking the time to make this video to educate people. I hope you can get the support you need. Sending hugs xx
Thank you, that means a lot ❤️
Thank you so much for doing this video, Chloe. It has taught me a lot. You are truly an inspiration. I hope you get the support you need moving forward. Sending you lots of good wishes xxx
Thank you for sharing and educating us about this, it is so crazy how life can change so quickly but your doing amazing with your ebay. your an inspiration xx big hugs xxx
Thank you Lisa. Life is precious & I think we all forget that sometimes xx
Glad you will be getting the support you need. Sending good vibes
Awe bless you Chloe, your amazing so proud of you for doing this video. Hoping the best possible outcome for you and your family xxx
Bless you Chloe for sharing and raising awareness. Rare illnesses definitely need some light shining on them. Because they are rare they don't appear on many lists or official categories so it's difficult to get help and support. I have a rare idiopathic neurological condition called Transverse Myelitis which barely anyone has heard of. Went to bed one night and woke up paralysed from the chest down and life has and never will be the same since. I was discharged after 2 years as no more can be done and there is no aftercare. l have recovered some mobility and about 50% to how I was before. Not going to lie it took some serious adjustment both physically and mentally, a kind of grief for the life and plans that are no longer possible. 😓 I manage to work still which takes all my energy but gives me a semblance of normality and is good for my mental health. I am not brave enough like you to go online and share though, so bravo. You are amazing, have followed you for a while, just before you became ill and it is brilliant that you have kept your livelihood and channel going whilst caring for a young family and being so poorly l certainly know more about IIH and 'blindness' which can only be a good thing. Keep doing what you are doing and pushing through. So pleased you liked York, my home town, you're right these days the shops know what they have but it's still fun to look. I can't do as much of that as I'd like now but I get a 'fix' now again and when I can't I can watch amazing people like you instead. Sending hugs Deborah ((( 💛 )))
You are inspirational Chloe - thank you for the video as has taught me a lot - From watching your reselling videos we all know that you have been struggling a little bit to see the clothes etc. - I hope they can give you some devices to help with that and with life in general so you can keep doing what you love - Wishing you the very best XX
You are a tough cookie indeed, and sharing your journey you will help so many 💕💕
Thank you xx
Thank you, Chloe, for explaining being registered blind when there is still some sight remaining. Some years back I met someone who was registered blind, but was aware she seemed to look directly at me as well as following me when I was nearby, but unfortunately was unable to find out what the nature of her blindness was. I currently have an online friend, overseas, who has been registered blind, and he has been able to explain that he has Stargardt Disease where there is macula degeneration. Last year he had to have cataract surgery, but sadly the improvement to his sight was only minimal. I wish you the best xx
Thank you so much. Eyes are so precious. There’s so much that can go wrong with them & im still learning so much from others. I hope your friend is doing ok xx
Thanks for sharing your story! Fellow iih diagnosis. I am currently being treated. I really enjoyed hearing your story and appreciate you being so honest. My doctors basically just stuck me on medication and told me to lose weight for now.
I hope things get better for you. It’s a tough condition to live with, but we’re strong 💪🏻 you’ve got this. Sending lots of love ❤️
I have IIH found by pappilodema at the start of March by my optician (well, they found it last March but they didn’t make a referral!) just stumbled along your video and I can really relate to your experience in a few ways, first hospital that treated me was horrific and had to go elsewhere after too, I’m sorry to hear about where you are currently with regards to your eyesight but at the same time I can see that you a strong and loving lady who will deal with this like you have dealt with everything so far and there will be things that will be put in place to support you like you say. It is such a strange thing like you say going from one year before feeling absolutely fine and in some ways taking life for granted and then your life being turned upside down. I’m right here with you. xx
Oh I’m so sorry you have to deal with this too. I wouldn’t wish it on anyone. I hope you’re doing ok. Have you been put on medication? If so, I hope you see a difference. It’s really draining, but as sad as it sounds, you learn to live with it. If you need someone to talk to about it, feel free to message me on Instagram xx
Thank you so much for sharing your story and posting this video. I got sick and had to go to the emergency room. I had to get a mri and the doctors wanted to do a Lumbar Puncture. I refused at the time. I had two done before and I am tired of it. The second LP was painful afterwards my back would hurt as a result of my pulse. They didn’t know what it was but simply said it could be neurological. And sent me home. About a week or so later I got a call saying that I had IIH. And now I have to have another LP. My eye doctor who does not explain anything to me. I found out just recently on a patient portal. And now I am scheduled for a visual field test in the beginning of the year.
Thank-you for making this video, I certainly learned a lot from it. I have glaucoma, and recently had a problem when I thought I had a retinal detatchment, but it turned out just to be separation of the gel due to age; it was very frightening bright flashing lights and lots of eye floaters. Still have some light flashing at the edge of eye and hoping it settles down. I cannot believe how bad your experience was of the NHS, that was terrible to send you home like that, but glad you got the treatment you needed in the end. I am sure this video will help a lot of people with the condition
That sounds awful! I’m really sorry you went through that. I really hope things settle down for you soon. Sendings lots of hugs and positive thoughts ❤️
@@chloesresellingjourney thankyou
Your very brave for sharing just remember everyone has something and out of everything bad comes something good. God bless you
Thank you 🙏🏻
I'm really sorry this happened to you :( Thank you for warning everyone to not wait with spinal tabs .. I always kind of thought doctors would take care of you and make sure you are where you need to be at the right time.. I also have swollen optic nerves and waited 3 months for my MRI appointment which I got done today. I was again told nothing and am now waiting for results. It's weird they didn't really tell me what it could be, just swollen optic nerve and left me to do my own research online. I only found out about it because I wanted to get lazik eye surgery done and went to a free consultation, quite funny how things work out sometimes. Thanks for the great advise and I wish you the best!! xoxo
Good luck with the results! I’ve learnt to take charge of my own medical care over the past few years. It’s your body & if something doesn’t feel right, you are always entitled to a second opinion! 💕 I let the doctors turn me away in the beginning even though my gut told me something was wrong. After going to another hospital I was told I’d left it too long and had permanent damage to my eyes. Trust your gut & your body! ❤️❤️
@@chloesresellingjourney thank you so much!! It is so infuriating and hearbreaking when you trust your doctor and are let down, im very sorry that this happened to you :( Its been a week since the MRI and still haven't heard anything I hope to get the results soon.. Thank you for the great advise!! 💗💗💗💗
hi don't worry at all.there are so so so many people like us who have eye problems.thank God you can see.many can't see they still are so happy in their life.when we get any problem,we get courage to bare that as well.just have to be thankful and have to stay positive, which is too hard when we are going through pain and problems.
I also have eye problems.just got back from eye specialist. I have very week eye sight since I was child.have had laser for eye correction (which was a flop)im minus 9,10 now)and then laser to fix back holes of my eyes,and since then I'm having extreme eye pain in one of my eye,thinking it's dry eye condition, but got to know after so many years that it's a syndrome called "recurring cornea corrosion syndrom".it's so hard to deal with the pain.. it's like a cut or wound on my cornea which tries to heal itself but opening and closing eye lids doesn't let it heal.if I can't get it better by putting eyes drops,then they will do a very painful surgery vy scraping off the part of cornea with blade which has no guarantee that it will get better or not.i was so sad and crying but just came across your video and saw all of us go through some kind of pain.Our Lord only give us pain which we can bear.so let's keep in touch and hopefly we all can support each other.im also an ebay reseller in uk.always struggling to list items on ebay with these painful eyes making it so hard to see phone screen.but being a mother,have to feed kids,so have to list.have faith and things will be good
I’m so sorry you’re going through that. It sounds awful! Thank you for educating me on the condition. I’ve never heard of it before. I hope things get better for you. Sending you so much love and good luck 🤞🏻
Never heard of that before must be hard for you right now. You do have very nice eyes though haha Best of luck daz
I’m female 21 and I was diagnosed with IIH in 2020 the only reason why I can see today is because of my mom’s friend ( who has IIH ).
she pushed my mom to take me to the eye doctor as soon as possible instead of waiting for my appointment when they were on the phone and my mom mentioned I’m headaches & fuzzy vision.
I’m fine now it’s managed by medication
I’m so glad you had someone around you who knew what to do ❤️ I’m so sorry you have to deal with this horrid condition. I hope it stays stable for you xx
Did you also experience dim vision? And if so, did that improve over time?
I have iih, hi! I got diagnosed pretty recently. They thought I had a brain tumor so I'm relieved, but I also have a lot of spine pain in the same spot for a few years now and I've started having trouble keeping my balance sometimes. I'm trying to decide whether to be brave and ask for the spine people to do an MRI.
Why is this always so hard. We don't want to be a bother or we get hurt we're scared and sometimes it just feels so difficult to get care.
I hope your new cane is awesome and I really appreciate you sharing your story. Maybe I'll be brave enough to do a video too some time.
I’m so sorry you have to deal with this awful condition too. Try and get as much info as you can. You’ll be able to deal with it better then. The cane has been amazing, thank you!
Making the videos & speaking about it has helped me to process it all. So I’d say film one, even if you don’t intend on realising it! It’s good to talk it through, even if it’s to yourself 😂 good luck with everything 💕
Hi Chloe - I just needed some advice. My vision got very bad the other day. I have IIH and went off diamox two weeks ago because my doctors said that the diamox was causing my kidney stones, kidney infection, uti's, and sepsis. I feel so dizzy and tunnel vision is exactly what I think I have. My neuro opthalmologist appt. is Aug 15 but I just needed some advice. I got a walker because it's so bad and the ER gave it to me. .THank you so much for your help, Amanda
I just to give a hug thankso much for sharing ❤️ very interested
Diet can effect inflammation in the body and can cause swelling in the face, throat and eyes. Allergies are the main culprit. Itching could be from soy deriavatives in makeups.
there is an eye doctor at Grundy Center Iowa Wolfe EYE clinic and she helped someone with what you have...
Idk how I came across this but I'm so sorry. I will never take my sight for granted again
Also you're not able to fully see. So you're *dis* abled to fully see. I get it though its the stigma
Thank you 🙏🏻
I went to eye doctor once as I also have eye disease due to mastrubation and there I meet one women,who was crying,how this can happen,her family tried to calm her,she had operation few days back but after surgery lost complete eye sight,it means some wrong can happen in surgery,many times stomach surgery brings death
Many dont even know they are color blind. One young man wanted to be a pilot got a degree in aeronautics then applied to be a pilot with the military and his dreams of being a pilot were crushed. Because of his color blindness. It was heartbreaking Check out the organization light house for the blind they help people with all types of blindness . Your going to alright. 💚
thanks for rising awarness I am with degenerative myopia myself and I know as many others how much of an impact gradual or sudden vision loss in life feels like. Even being stated by the best in your area as legally blind I wonder if they have offered potential improvements such as magnifying implants in the future? They often try to do those for people with macular problems. Moreover what is your eye pressure after all this, is it stabilized or it is still that high? If it is aren't there more advanced procedures to help or eyedrops to take? Hope everyone gets better when comming to eye health and in general... In modern medicine and its profound improvement I still do not get it how so many people got answers such as "Nothing can be done... Its genetic"...
I have IIH as well my opening pressure was 29. My optic nerve are swollen I see spots and stuff that’s not there.
Oh I’m so sorry 😞 it’s a horrible condition. I hope you’re doing ok
Might be worth contacting a no win no fee law firm that specialises in medical negligence who could tell you if you have a claim. Also there could well be a disability benefit you could apply for. If you’re entitled to something don’t be shy. Claim it even if you don’t feel you need it. Also you might be able to get a blue badge for the car( You don’t have to be the driver) or a free bus pass. Sorry this has happened to you but thank you for raising awareness.
Hi I have iih
If my memory serves me correctly only 3 of every 100 people that are registered a severely visibly impaired are actually 100% blind like myself we are few and far between I have only come across one other person in recent years
That’s very interesting, thanks Heidi! I knew it was a low percentage, but I didn’t know it was quite that low.
When your vision starts going dim, is that the no point of return? if I may ask. Can it be reversed?
I think it depends on wether or not your optic nerves are damaged or just swollen. Mine are secretly damaged and that can’t be reversed. Damage to the optic nerves can’t be repaired, but swelling can go down once the pressure is being controlled. Obviously I’m not a trained professional though, so please take that info with a pinch of salt! That’s just want my ophthalmologist has told me xx