Eye loss issues!!!!

Eye care
1

HEY...... I suffer from a condition called conversion disorder which causes me to have syptoms of blindness but returns after minutes. This has been happening constantly for the past 2 years. Before this ive had no problem with my sight. Im now worried this is causing some form of damage. I go blind anywhere from 70-150 times a day but will gain the sight back after a short time. In the past few weeks sadly ive noticed that my sight isnt very good and cant see as clearly at any time and my eyes are hurting more that normal..........

Any suggesttions....Anyone experienced the same.......  

2

Sounds awful.

What advice did your ophthalmologist give to you?

3

Hi,I would make am appointment with a good neuro- ophthalmoist,something is not right,vision loss can be slowly progressive.

good luck

4

Yh its scary as im just so worried im going to end up permenttly blind.

I havent actually seen an ophthalmologist to be honest. Ive only had a general eye test but other than that no one else has looked at my eyes.

5

Thank you,

Yes i agree ive got an appointment with my GP so then hopefully they can get me seen by somone at an eye hosptial or something. Sadly though i have to wait 2 1/2 weeks until even that appoinement :-(((( . Hope i get my sight back!!

6

Hey Gemma! 

 How does one get diagnosed for conversion disorder? I think I may have that as well. For 4 years I have had double vision that no specialist has been able to identify on a medical level that there is something going on. Meaning they believe I am causing this to myself. I do suffer from anxiety and stress. Pretty much I have GAD no doubt. But the double vision is something that is constant adn I have waking up and going to bed. Any responses would be helpful smile

7

Gosh that must caus soo much stress, do you have to see a general practicioner for a referel,could you go to emergancy?? I would think that would be considered an emergancy,loss of vision.Xx

8

Hey,

Well i was diagosed now 2 years ago and blindess is only one of my problems. Do you have any other syptoms? Mine came on suddenly literally over night where i woke up and had no feeling down the left side of my body equally blurred vision but only on the left side. They therofre at first thought i had had a stroke which i hadnt. I went to A&E at the time it happened but very shortly it happned everything retuned to normal again.

Basically a very long story short i had every test you can imagine to see if there was anything pysically wrong with me. I.e blood tests, ct, mri (numorous times), all heart tests, 24 hr ECG, many ECGS. Bascially everything was always clear. From what ive read most people go to there GP or hospital and get have to have many tests to rule out something pysical. So that will be the first thing that will happen. They will explore every syptom in detail and ask you to keep track of them. If you already suffer with aniexty and your syptoms match then it shoudnt take them long to work it out. But its not a well none condition and i cant tell you how many doctors know nothing about it and some dont belive you. Dont let that get you down. I sufer from PTSD and this is a further complication to it and its horrble i must say. Its like having a disablity. I get paralsis daily where i have no feeling in my legs, this happens anywhere from 75-150 times a day and the blindess sometimes hits 300 times a day now. For brief moments. It means i cant work or actually even go out of my flat curretly. I dont mean to scare you but the process in sorting this isnt quick so i urge to go to your Gp asap. There is no medication that fixes it, anti deprassants are used and sometimes anti anexity meds to. But the key is the get the root of the problem and speical cousnelling is needed along with CBT and i even need intensive pysio on my legs.

You say you have a GAD? What is that sorry?

Mine started as i say one night and literally has got worse and worse since. I used to work and a year ago had to stop. It can get better though and its effecitvly a stress related condition.

But 100% go to you GP and explain what youve said here and even say what you think it may be. Dont let them put you off. Id be interested to here if you have any other syptoms but actually i think even just having the one is enough. I also used to suffer with deafness to which is part of it but at the moment thats not a problem.

Id be really happy to help you through this. I did it all alone and was terrified. Any questions please feel free to ask.

Be brave and dont give up

Gemma :-)  

9

Hey, 

Yes its ever so scary and ive got other syptoms with to deal with as well. Which makes each day a fight. 

Well ive made an appointment with my GP but thats neary two weeks away and not sure if its classed as an emergancy or not and if a hosptal can help me. Im guessing after seeing the GP they will refer me on to someone who deals with this. Or in the eye hospital in london. But i know you need a letter from your GP to go there. 

So just waiting at the moment........................

Do you suffer with this?

10

Hey Gemma,

 

 The way mine began was when I was only 24. I was very young. I was watching television in the pitch dark all by myself thinking about very stressfil things. Among them was a close family friend who I had learned was diagnosed with terminal cancer. Another one was this young guy who at that time was a few years ago than me also, diagnosed with cancer. I didn't know him well but I knew him. Then all these stories of people getting sick and dying. That scared the living s**t out of me and I have always had anxiety but supressed it. Why? Because my family doesn't believe or didn't that is was a real disease that may come back and paralyze you.

Anyway, I had other stressors and I had a terrible fligth experience in which I am almost certain gave me PTSD. Regardlss, while I was watching t.v. having those thoughts in my head my vision just suddenly changed on my but it was more like a blurry fog. And it was accompanied with the tightest/squeezing headache you could ever imagine. On a scale of 1-10 I was 10 in discomfort. I couldn't sleep that night and symptoms never went away. I have always been emotional and the frightened type. Went to doctors did two mri's in the span of 4 years thinking maybe I have an autoimmune problem. Blood work, NOTHING. But I do have other symptoms to answer your question. I had twitching. I have muscle soreness/weakness. I am always tired. I have constant headache pain feel dizzy. Feeling lightheaded was actually a new one. Often these symptoms are worsened with stress for me. At this point I am confused as to if its PSYCHOLIGICAL or MEDICAL causing the symptoms.

Share with me if you face anything like this... I want nothign more than to get better and be free of relief. BTW- before all of this never had anything in my life. Never suffered from headaches. NO ONE in my family has anything like this other than my mother who has anxiety. Thank You and let;s talk further smile

11

No,but i have some major eye problems so I can relate to that part of it. Thank goodness for anxiety meds. Please keep us posted. Xx

12

Hey, 

Thanks for getting back to me. Ive read your story in detail and i do believe you have exactly what i have. Everyone has different syptoms and at different levels. 

Are you going to go the doctors? It will not get better if you dont and probably just increase espically in times of stress.

Its taken me a year an a half to get my referall as there only 3 places in the uk that actually specialise in it. Where do you live? I should be getting my assessment date in next few months. I have had some treatment but mine is extreme so needs top people to deal with it. 

Please just dont hang around with. 

I would suggest talking therpy, CBT is fantastic in copying with stuff u explained. You can buy so many books etc online to which ive done. Amazon have a some. But get an assessement as like me it sounds like you need pyhsio too. 

All of your symtpoms i have not every day some but are all signs of stress and anixety. My main problem is no sight in the left eye really and no feeling in both legs. Means i cant work or anything. Im only 24 as well. 

Something ive been told though as these syptoms are the bodies way of letting everything out..... like it may have been bottled up for however long but if mentally we dont let it out it shows us in a physical way. If that makes sense. You have said youve had all this aniexty but kept in under control.

I highly suggest you go get the help you need and deserve dont let it get worse. Be brave. 

Do you have family support now? 

No test will come back postive either so dont be alarmed as i know your not making it up..... I understand. It can be scary and i feel so out of control when its bad but everything will get better with the right help.

Are you taking any meds? I take an anti depressant but remember i literally think there are 100s of them i certanily tried about 6 before i found one that worked. Also alot of people take them incorrectly. It takes 3 weeks to get into your system and only 3 days to be out of it. Also taking the same time of day is so very important. I say this because you may not be taking any now but if you do thats the best fact ive learnt. They wont work if you missing days or taking at differnt times of the day. Always best in the morning for the most. I was not just told this from my GP but the top consultant at st georges hospital.

Do you sleep well?

Do you work?

Do you have support?

Do you have private or nhs healthcare etc?

Anyway im more than happy to help you through this and please ask any questions you like. Everything ive told you is what ive learnt and been through the past 2 years.

I hope things dont get worse for you i really do. 

Gemma

 

13

Hey, 

Oh ok i see. Is it related to your anxiety the cause of your blindness? 

Yes thank god but also for the variety of counselling out there. Once help is offered it is good so takes some time.

Ill keep you posted.

GEMMA

14

Do you have anything you can take for the stress this must caus? Anxiety meds?

15

If this might be in relation to a tramatic event etc,maybe that type of med could help lessen symptoms,just a thought.

16

Hey, 

Yes i take anti depressants  for the anxiety and also a fast acting anxiety med for in moments of lots of stree. 

Been taking them for at least a year now. On highest dose as well but once when didnt take for a while it all got worse so they do work and always take them now.

 

17

Yup your right it  is becasue of tramatic event and my problems only started to occur when i removed myself from the situation. In a way its my bodies way of dealing with years of stress and upset. So the meds have helped.

18

Makes sense. I am on an anxiety med also.

19

I am happy ive been able to have met someone who is going through similar situation. your from the UK correct? I live in Canada.Ya my symptoms though are crazy. They are double vision everyday all day. Ive seen my GP thats how I got the referal for my MRI. But I am going again this monday to make sure its not medical again. It's had to believe that this can be caused my immense stress. BUT everyone around me , family friends co workers friends that arent as close all truely believe its from anxiety/stress/ possible depression. Although, I wouldn't know if I am and if so its because I don't wnat to feel the discomfort. I don't want to think or believe I have a doomed future with my health you know? Ive tried a couple pills before and it made me tired... although I didn't take them ong enough. Not sure what it would do. There is stigma and I am scared they are also bad for you. I was going to the gym the sole thing that helped incredibly and eating well. Also, good sleep. I feel alone at times because no one understands. Ill be out sometimes and now its gotten to the point where sometimes I am araid because I am afraid that I might collapse because I don't know how my body will react. Thats what scares me. 

20

Hello, 

Sorry i may have put too much doom and gloom in the last message.

Just wanted to be honest in what i know and how it affects me etc.

So glad your going on monday though. If i was you i would ask your GP if they have heard about conversion disorder and if they think its possble you have it. They may not know much about it. But like me i was then referred to my local CMHT which will be in a hospital and they can all the right people to help and support you. They also have access to CBT and cousnelling etc. 

The good thing is once you have delt with the issues you should then suffer again as long as you deal with them through the right help. Hopfully your health care is faster then mine, wish i could afford to go privaelty. I do live in the uk yes.

You may have to go through loads of physical tests even if they do think its conversion disorder as they just like to rule it out. 

I do also suggest though you be very honest with you GP and tell them everything as in how u feel, how long its been like this and every single syptom. Take someone with you if you can or like me write it all down before hand.

It is scary as your talking about things that affect you everyday and like you say no one really understands. But i do. I really feel for you as ive been searching for over a year to find somone with same condition. Trust me not many out there.

I also totally get how u feel over the medication thing. I took it bad at first as im not the type to just take any pill for anything. I never even took painkillers or anything. But after a while i changed my way of thinking and actually i thought these are top people who have delt with people in my situtation and i have to listen. To be honest half the bad press on it is that people use them incorrectly. I have done myself and it messes with your whole body massively. They have to be taken daily alot of people forget and within the same hour of each day and most in the morning only. Once you forget 3 days thats it your starting from the beginning again as they arent in your system. I think they are amazing really and if they take some of the pressure of your situation why wouldnt anyone try them. (only what i think). But use them correctly and GPS give advice on them. I btw didnt take it from my GP at first as wanted an second person to agree. But they really arent that bad they are little pills but powerful pills. I just thought if it can help me even a little then why not. I want to get better and its really not a life thing and can stop once better. So have a think about it.

Dont be alarmed either as they can help. You may only need some light talking theropy and some good tips on dealing with aniexty and your feel so much better. Keep strong. Im here for you. 

Dont worry about others either as long as you want to get better and get the help you need then thats all that matters. 

Oh and the gym is fanatstic as with alot of illnesses exercise is essental. For conversion disorder its proven to help. I started jogging a while ago when i was more able and my gosh it really helped. So keep that up. I will be starting again once im able to and plan to join the gym. I guess even a long walk is something as clears your mind and sends happiness to you body.

Ask me anything and im happy to help.