No relief for my dry eyes

[m.jen]

Hey everyone! My name is Jen, I'm 23 and have been suffering from dry eye for the past 3 years. I've done literally everything to get to the root cause of this horrible problem, but all my blood work is coming back normal.

It took me forever to even find a good optometrist that even cared about this, but as of now I've been tested for thyroid problems, diabetes, hormonal problems, sjogrens syndrome, my vitamin levels have been tested and everything is great. My vitamin D level was at a 12, which I was hoping that's what was causing my issues but now it's at 78 and I still feel crummy I'm scared that I have sjogren's because I've heard that you can have the disorder even when you're blood tests are normal. I wanted to do the lip biopsy just to completely rule out sjogrens, but the 2 rheumatologists I saw both didn't want to put me through that.

I do have dry mouth, I get dizzy very easily, and I have random muscle spasms all the time (the worst is my jaw will jerk uncontrollably sometimes when I'm talking...super awkward and weird. Freaks me out!!) The worst is my eyes though.

I have a schirmer test of 5 I think...and a little better in my right eye but my doc said 15 was normal. My TBUT is 3 seconds but my doc says my miebomian glands are fine. I would think that that low of a TBUT would have to be my miegomian glands?? He has no idea why my eyes are so dry and I'm so young for this.

I've been taking high quality fish oil, flax seed, vitamin A, hot and cold compresses, I have plugs, use scleral lenses (but lately they don't fit right for some reason!) restasis for the past 2 years, freshkote...and I feel like I'm missing something. I've tried doxy, lotemax, azasite, lacriserts. This next week I'm heading to Portland to possibly try lipiflow if I'm a candidate.

I'm SO desperate to just get this thing under control so I can have my life back!! I'm sick of everyday not knowing how painful my eyes are going to be. It's been so difficult and I'm going to find an answer to this! Sorry this was so long....but any advice would be greatly appreciated!! Do you think I should get the lip biopsy even though both my rhuemy's said I shouldn't? I'm also looking into getting food allergies tested. Do you know of any amazing dry eye specialist doctors that have been helpful?? Thank you for your responses! I'm new so write me!

[m.jen]

I forgot to mention that about 2 months ago I started seeing a lot of floaters in both my eyes. I've had my retina checked 3 times just to make sure there aren't any tears or signs of it detaching and everything looks good. I still see the floaters everyday and there are SO many of them so I'm wondering if this could be connected to my dry eyes.

I should have also mentioned that I live in Montana, but for the next few months I'm living in Hawaii and was planning on traveling overseas for a bit. I'm hesitant on traveling because I do want to get this problem fixed. However, it's been 3 years now and I don't want to have to put my entire life on hold because of this.

Also I am looking into Lipiflow treatment in Portland Oregon. The doctor there is hopeful that they can at least tell me what is going on with my eyes.

[spmcc]

Hi Jen,

I'm so sorry you're here. It sounds like you have a lot going on (dry eyes, dry mouth, dizziness, muscle spasms). I hope you have a good rheumatologist/doctor to help you figure this out.

There have been some people here with eye problems and POTS (postural orthostatic tachychardia syndrome). You might (or might not!) want to read y-gwair's posts. She finally got a diagnosis of dysautonomia (http://www.dryeyezone.com/talk/showt...highlight=POTS).

There are a lot of posts on DEZ about LipiFlow. Here is a somewhat recent thread where a doctor asked for our feedback: http://www.dryeyezone.com/talk/showt...light=Lipiflow

As for allergies, you'll also find a lot of info here. For instance, there are people with experience in and knowledge of Type 4 allergies (e.g., http://www.dryeyezone.com/talk/showt...hlight=Type+IV). You can search DEZ especially for posts by MaryVa61.

Have fun on your travels. I hope you find relief for your eyes.

[m.jen]

Thank you so much for your response! I will definitely look into POTS...it does scare me though! I really do wonder if my problems have something to do with a brain issue. I hope not, but it's weird that I have all these other weird symptoms that started around the time my eye pain did.