Does this affect anyone else this much?

[spmcc]

'A better life will come your way the second you get up and start walking towards it.'

Love that! And we need to be our own health advocates.

I have been trying to blink more. This has moistened my eyes but they remain sore as if the moisture just doesnt lubricate enough.

Glad you caught that. Yes, forceful blinking should help to get oils out. I'm glad you're doing that. Also, after you blink, make sure you completely relax (eyes, face, jaw). Try to continue with forceful blinks to see if, over time, this brings enough lubrication.

I tried my systane again as well but it feels like i have cotton wool stuffed under my lids. Really horrible.

I get this feeling when the drops were making me worse. I wouldn't use them again if that's the feeling I got. Is there another preservative free drop you can try? One with a different active ingredient perhaps.

Finally i could only find full face goggles but tried them. They definitely had a positive effect on evaporation but i still had an urge to squint. Now i am concerned with hemifacial dystonia or maybe a tic particularly as i have an urge when sitting working or even laying to rest my head to the same side as my squinty eye.. almost like a one sided shrug........ im a bit broken :/

If (and that's an IF), the dry eye (evaporative, MGD, whatever) is causing the squint, then hopefully improving the dry eye will improve/reduce/stop the squint. If it's somehow the other way around (squint leading to eye problems), then something else will need to be figured out by doctors.

Do you feel like the squint is at all related to photophobia? I ask because if you decide to purchase moisture chambers (e.g., WileyX or 7Eye are really the best), you can get tinted/sunglass lenses.

Please don't think of being broken. You're on your way to figuring this out.

[browneyesblu]

Dear all,
I havent been on here for a while after i felt like i shouldnt keep depressing you but i have no one who knows like you do.

I have been diagnosed with dry eye but it is so much more than that. My face is permanently contorted in a squint and I feel nausea and dizziness. I cant read or watch tv or even work at the moment, my head feels like there is a constant band around it from presumably eye strain and my neck hurts (probably from tilting my head to see). I also have aching in my throat and some vibration sensations down my left leg. (noticeable since i had a hysterectomy in September) Out of desperation I paid to see a private professional who, to a degree, is herself unsure. I am now being put back through the NHS and will be given punctal plugs in 6 weeks with a view to botox for what could be a spasm (but is not typical). I feel very scared that there could be something more going on so i have made another appointment to see my gp in a few days.

I even asked one optician if it could be ms and she said no. Can i presume that any possibility of this would have been picked up from the combination of optician and opthals Ive seen? I did manage to find something that describes my condiditon exactly (except for the dryness) called vertical heterophoria (even though i really shouldnt google my symptoms!), but the opticians have said it isnt that.

I have a history of anxiety and depression but wonder if this condition has affected anyone else to this extent or whether my mind is playing tricks on me?

I am on doxcycline and lacrilube for the eyes and lyrica for anxiety.

So worried. Sorry if i have upset anyone by being depressed about this :/
Thank you

nutteetart,

I’m not trying to diagnose, I believe very strongly that laypeople should not do so, especially over the Internet. But you seem to be suffering so much it’s impossible not to try and help. So I’m tossing this out hoping you can run it by a doctor. Has anyone considered the possibility that you may be suffering from migraines? Migraines can cause:
Headaches that feel like there is a band around your head
Nausea
Dizziness
Tingling sensations in the extremities
Photophobia (maybe that on top of the dry eye is causing the squint)
Anxiety
Depression

Migraines usually last 72 hours or less, but in rare cases they can last weeks or even months. It fits almost all your symptoms. It’s a diagnosis of exclusion, or one made from symptoms; there is no definitive test. You can try this simple treatment: hydrate. Just drink plenty of water, especially early in the morning. Your body gets dehydrated during sleep, and dehydration has been linked to migraines.

I also think smpcc’s advice is excellent, and the other posters’ as well. I hope you find some relief soon.

[farmgirl]

Hi Nutteetart:

I read through this whole thread and nobody made any mention of moisture retaining goggles. Do you have a pair? I got the darkest lenses I could find in a pair of Wiley X with the original thick foam gasket and they made a world of difference. I cannot live without them (I suffer from Sjogren's). They have allowed me to be outside without squinting and to go places where it would have been impossible to be before, such as driving in a convertible.

For me the glasses and the plugs have made all the difference in the world. FYI the doctors did botox on my sister in law and made her MUCH worse as after the botox for spasm she couldn't even close her eye properly. This precipitated a cascade of events that have never resolved. Personally, after her experience, I wold never let anyone near my eyes with botox.

Interestingly enough though years ago I when I was suffering from fibromyalgia type symptoms with a chronic neck injury I had a lot of numbness and tingling in various parts of my body that came and went and were never the same. It was a smorgasbord of symptoms. The neuro's I think decided I was just another headcase because it was undiagnosable. I recently was told about the health benefits of Magnesium chloride and have concluded that a shortage of that contributed to most of my problems at the time. Check out this URL and see if you can connect any dots.

http://articles.mercola.com/sites/ar...-benefits.aspx

It is so cheap to make/take and I have never felt better....cheers...F/G

PS:SPMCC was writing at the same time as me and I note the suggestion of glasses as well

[NotADryEye]

insightful!
it feels like i have cotton wool stuffed under my lids. Really horrible.

nutteetart, I used to describe the sensation as tissue stuffed under my eye lids. It was horrible. Beyond imagination. All I could do was keep my eyes closed. Eventually I was diagnosed with conjunctival chalasis and had surgery in both eyes, upper and lower, to replace the tissue.

This link will tell you about conjunctival chalasis: http://en.wikipedia.org/wiki/Conjunctival_chalasis
For more information about the surgery go to: http://www.ncbi.nlm.nih.gov/pubmed/22645931

If you can not read even this, then ask someone to read these for you.

If you have this condition drops will not help at all. Blinking will not help. It can make the sensation worse. I would recommend finding a cornea specialist who is a surgeon. Maybe our dear littlemermaid can help you find someone who has experience with the surgery in the UK, although I know she is busy with her own life.

Hang in there. I know exactly how horrible this feels. I was where you are now in 2011. It was a difficult journey but I am feeling much better and am able to function enough to post this message.

My heart goes out to you. In the mean time, you might just try keeping your eyes closed. That helped me a lot and I could at least get through the day without horrible thoughts.

[nutteetart]

thank you. I cant tell you what your support means and i hope that one day i can look back and help someone like me.
I am going to order my moisture chambers today and can i ask you NADE, Farmgirl and BEB... did any of you squint? did you feel disconnected and disoriented?
i wake up in the night and terrify myself that there is something really wrong and when i wake properly i have to think logically dry eye=corneal irritation=squinting=disorientation/vertigo from not seeing properly=anxiety and all the disabling feelings that go with it! is this feasible?
FYI Little M has given me invaluable help but i now have 3 weeks until i get plugs. If they dont help then i will have to go further afield. Hard for me because my anxiety makes me reluctant to go out. Fighting like mad here. Thank you for holding my hand x

[NotADryEye]

nutteetart, I squinted when I had to open my eyes. I squinted when I read. I tried not to even open my eyes. At its worst, I couldn't wave my hand in front of my eyes because the wind it made was too much. I couldn't walk across a room with my eyes opened because the wind of that was too much. The feeling of tissue stuffed under the eye lids was extreme.

Honestly, you sound to me like you have conjunctival chalasis. That description is so specific, cotton balls under the lids. Plugs won't help. They may give you a little relief, but some of us have this and it is symptomatic. Some of us have it and are asymptomatic.

I was panicked about it all the time. My brother, who is a doctor, finally told me that the doctors I was seeing didn't need to think out of the box. They needed to find a bigger box, because I am still human and it is just a disease of the human body. If only my brother were an ophthalmologist, but he isn't. He's an oncologist/hematologist.

So hang in there. Do you have someone who can help you find a doctor who can diagnose and treat this? You'll need a ophthalmologist who is a surgeon who specializes in this.

[nutteetart]

my consultant specialises in lacrimal disorders, ocuplasty and cataract surgery. But i will def ask her about this.
What treatment do you have?

[farmgirl]

No nutteetart I have never squinted unless I am out in the light without my dark glasses. I am very photophobic and sometimes have to wear dark glasses over top of my dark glasses, particularly if I am driving and there is a lot of glare. The only time I have felt disconnected and disoriented is when I was having all the neurological problems that I now attribute to a lack of magnesium.

I like what NotaDryEye was saying it makes some sense and sounds like it is worth investigating. Be your own advocate and remember you will improve it just takes time and a lot of trial and error. What works for one doesn't always work for another but you just keep trying until you find that combination that works for you. I have Sjogrens and now, 4 years post diagnosis, I am ever so much (probably 80%) than I was 4 years ago, thanks to this forum....hang in there and good luck....cheers...F/G

[browneyesblu]

Hi nutteetart,

No, I never squinted either. You have so many symptoms unusual to dry eye, that's why I was thinking there must be something else going on. I echo what Farmgirl said. It absolutely stinks right now but we've all been there, just hang on and you will figure this out and get better, much better than you are now. It's happened for so many people on this forum so I know it will happen for you too. Good luck!

[nutteetart]

thank you. Looks like its just NADE and me that have had squinting issues. :-/

[nutteetart]

in a bad way. one week til plugs and going to see cranial osteopath tomorrow...... fingers crossed x

[nutteetart]

Its been a few months and a lot has happened.
The day i went for plugs was abandoned after my eyes werent that dry on the day but my eyes were still sore and squinty.
It was decided that i went for a sleep study to establish a possible apnea link with floppy eyelid syndrome. The sleep study was positive but having been on cpap treatment for the past 4 weeks i now feel even worse.
Desperation took me to the Moorfields Eye Hospital in London yesterday where (apart from having my car towed for £265 unfair fine!!!) I am now being referred to oculoplasty to establish if this is blepharospasm.
Having read about this i am really scared.
Does anyone know much about this condition? Can it make you feel as awful as i do with sore, burning, squinty eyes, sore neck and shoulders, feeling disoriented because I cant see well and depressed?
Im falling apart .....!

[cathy8889]

Hi Logan

I know you wrote this post a while ago but I was just wondering if you took any supplements to help with you b2 deficiency? I believe that I was (still recovering I think) deficient in b2, my eyes were terrible, swollen mouth and throat, doctors kept telling me it was a virus or go to the dentist! I am taking a b2 supplement at the moment and eating foods with riboflavin in but just want to give my body a boost. I'm not sure if the b2 vitamin I'm taking is any good and whether I'd be better off taking a b complex vitamin.

Many thanks

Cath

I actually think NAC is an entire marketing tool, similar to Resevetrol and Propolis. Just recently I tried NAC for a couple of days, and it made me feel AWFUL and I started sprouting more aggressive symptoms of Vitamin B2 deficiency.

Have you also looked into Vitamin B complex? Not sure if you take that already, but there were some cool Vitamin B2 drops available here:

http://global.rakuten.com/en/store/energy/item/f140/

Logan x

[cathy8889]

Hi nutteetart, I've just read your last post, I hope you are doing better, xx

Its been a few months and a lot has happened.
The day i went for plugs was abandoned after my eyes werent that dry on the day but my eyes were still sore and squinty.
It was decided that i went for a sleep study to establish a possible apnea link with floppy eyelid syndrome. The sleep study was positive but having been on cpap treatment for the past 4 weeks i now feel even worse.
Desperation took me to the Moorfields Eye Hospital in London yesterday where (apart from having my car towed for £265 unfair fine!!!) I am now being referred to oculoplasty to establish if this is blepharospasm.
Having read about this i am really scared.
Does anyone know much about this condition? Can it make you feel as awful as i do with sore, burning, squinty eyes, sore neck and shoulders, feeling disoriented because I cant see well and depressed?
Im falling apart .....!

[runnergirl]

Hi nutteetart,

I have blepharospasm. I am also on the blepharospasm web site. I squint alot, it can make you feel all these feelings you are feeling. Its OK though because really, it has alot to do with stress and your anxiety. I am only 2 years new to all this myself and for the first 6 months, I was so scared and depressed. I have a family that depends on me and a job that I have to work at, so I had to make the decision to get tough and work on letting the anxiety go. I am not a big person and I lost 15 pounds in those 6 months. Just know that it can be managed. There is a triumph section here and there are people that have recovered from blepharospasm. Will we recover? who knows, but I refuse to believe I wont recover and reading the triumph section here helps. remember that it is steps. I had to first learn about bleph then I had to learn about dry eye. There are things out there to help manage and right now, just managing these two problems is a daily job, but at least I can manage it. You too can manage them, it just might take a little time to figure it out, but you will. My eyes are sore, they burn, my neck gets sore and I feel disoriented sometimes, but I can not put my life on hold because of this. I am happy and blessed to still be able to see (when my eyes dont close that I am in perfect health besides this, there are so many others that are worse off in this world. Don't be scared...focus instead on how to get ahold of this and manage it, you can do it. sue