I am so very firghtened by what's happening

[presh]

and I am hoping you can give me some advice on what to do. I've been reading here for the last couple of days.

I am 44 years old (female) and have been having extreme headaches, mid facial and eye swelling, and dry eyes for approx 3 months.

Before this began it's hard to pinpoint what could have happened?? My husband and I had new carpet installed in part of the house, we sanded and polyeurethaned the hardwood floors downstairs, I had a kitty cat with an infected eye.... I also had a virus right before this started, in fact that's when the facial swelling and eye pain began in earnest. I also have ocular migraines (and have had for many years but not alot of pain with them - just the aura). I also think I have some rosacea on my face - I have alot of redness after a shower and broken capillaries that are permanent. And just to throw this in the mix - I have TMJ or clicking in my jaw - have had it for years but do not have any jaw pain or symptoms (other than the clicking noise) associated with it.

After reading here I realize that one or many of these things could have triggered this but I don't care at this point I just need to find an answer.

I have had a CT of my sinuses and a brain MRI - both clear. I was seen by my GP and given a z-pac for the virus. Then seen by an ENT and given another antibiotic for a supposed sinus infection (but my sinuses were really inflamed - maybe from the chemical exposure???) The eye pain and swelling and headache remained and I saw a neurologist who prescribed the MRI and a 5 day round of Prednisone (that seemed to help a bit but it came back).

I then went to my optomotrist who said my exam was normal and I may have had some mild papilla underneath my eyelid. I told him how dry and painful my eyes were and he gave me a script for Tobradex eye drops (steroid/antibiotic mix) and started me on fish oil capsules 3 x day. This did nothing either. I may have felt mildly better during treatment with the drops but it has come back with a vengence.

If you are hanging with me this far in the story - thank you! I am in daily pain and at this point I feel like my husband, family and friends think it's not real. I must also say that I've worn contacts for 20 years without a problem before this.

I cannot wear my contacts at all. I am having a difficult time at work and have missed some days. I've tried every over the counter eye drop at the grocery but none help. I've changed contact lens solution, new lenses, eye makeup, etc. Nothing helps.

I have an appintment with an Opthamologist in 2 weeks, but I am up tonight in a panic - a pure panic - thinking my eyes may never return to normal - and how am I going to wait for 2 weeks to get any relief??

My symptoms are severe headaches, severe pain in the eyes, "sensitivity" (parasthesia)and a feeling of fullness on my eyelids and the skin below my eyes, very dry eyes that are sometimes crusted in the mornings. This is so strange but I've also had highly colored fast moving pictures when I've closed my eyes (much different than an ocular migraine aura). I know it sounds crazy!! I work in the medical field and if I were to listen to a patient say this I would think that too! I am experiencing alot of anxiety with this also, and have cried myself to sleep the last few nights, from the pain and frustration.

Does anyone have a similar experience to mine as far as symptoms??? Can you shed some light as to how to get some moisture back in my eyes before my appointment n 2 weeks???

Thanks so much to those of you who too the time to read this (((hugs!)))

[presh]

Wow I had alot of typos last night in the state I was in - sorry for those.

Isn't there anyone with a similar situation? Severe headaches & boring eye pain, lid puffiness, dry eyes all rolled into one? I would love to hear from someone who has been through this with symptoms such as mine. It doesn't seem like many of the stories I've read here contain people with headaches and lid swelling (but I havn't read everything - far from it!).

Thank you.

[Nanerpus]

I have lid swelling some days when I wake up, it goes away after an hour or so...and I also have "tired" headaches and my eyes can feel "heavy" etc. I attribute this all to my allergies and lack of sleep due to allergies. Have you tried looking down that route yet?

[magoo]

Hi Presh, I have lid swelling and headaches (not severe headaches though). Seeing vivid fast moving pictures sounds like a problem that would not be caused by dry eyes. Have you seen a neurologist?

It sounds like the other symptoms (and perhaps even seeing the vivid pictures) were triggered by something that happened during the work you did on the house. I hope you can get to the bottom of this soon.

This sounds like something for Dr. House to solve. I hope you find a doctor who will look at the totality of your symptoms.

[presh]

Thanks for responding. :-)

Yes I've been to a neurologist (in fact I've worked for this physician before ) and brain MRI was normal.

My upper eyelids especially are so swollen in the mornings that I have to hold cold compresses on them for awhile just to look halfway normal. I've never been allergic to anything before but I know you can develop an allergy at any time. Maybe I will try Benadryl and see if this helps. Has anyone tried that? I am also going to order the eye drops from here and try them.

Yes I'd love it if Dr. House were a real person and could fix me!

[Margaret]

I'm post Lasik 9 months and my main symptom (other than dry eye) is eye lid pain and swelling. My uppers are worse than lowers. After doc shopping I just found an doc who diagnosed me with ocular rosacea. I believe we are probably on the right track with this diagnosis and he just put me on doxy. I'll let you know if it helps. I went onto the rosacea support site and it sounds like doxy helps many people. He also wants me to do warm compresses, which increase the inflammation, but he said I should do it and get past that hump so to speak because it's suppose to help the oils. Have you been diagnosed with MGD?

I used to have the vivid pictures in my head too. I think I even wrote a post asking the same thing. I found that it was probably due to the anxiety. I was prescribed Lorazepam and used it very sparingly but boy it helped me get out of my worst mental days. I also use a little bit of Benadryl at night to sleep on occassion, but that does dry you out so you have to figure out what amt is too much.

Good luck,
Margaret

[magoo]

Margaret, that makes sense that anxiety can cause those vivid pictures. (I love this forum, I learn something every day here!)

Presh, I take Benadryl occasionally when I get into something that causes an allergic flare up in my eyes. It is drying, but, for me, the trade off is worth it as it calms the irritation.

You're in the right place to find some answers, Presh.

Best wishes to you,
Lynda

[presh]

thank you all for replying, and for your support!!! Margaret please let me know how the doxy is working for you!! I hope it does the trick and you are more comfortable soon!

Yes I've been having trouble with anxiety over this. In my "normal life" I am fine but these past 3 months have been a nightmare of pain, swelling, missed the holidays, missed work, missed important events, and it is most upsetting to be upsetting all of the people I love and who love me - KWIM?? I'm pretty worried I might never be "normal" again. It's not just me who is suffering, my husband and family are too. I feel so guilty crying all the time and making them sad.

I hope and pray that the opthamologist I see in 2 weeks can point me in the right direction.

[presh]

getting better - posting an update

Ok well it's been awhile since I posted and my symptoms have gotten better. The daily headaches are gone and no more "vivid" dreams. I still have alot of upper and lower lid swelling though, and a dry feeling in my eyes.

I have been on steroid eye drops for about 3 weeks and I am in contacts again (but my doctor switched me to a different brand and new solution, etc). I do not wear the contacts everday yet - usually every other day or only for a few hours each day.

He says I have a type of GPC (giant papillary conjunctivitis), and it waxes and wanes in the 3 different times I've seen him - some days it looks better than others. I also went for a 2nd opinion and that doctor agreed with the treatment????

I am also going to start on Pataday tomorrow for 30 days.

I STILL think I have alot of symptoms of ocular roseacea but both doctors say no.

I have also changed soaps, hairspray, eye makeup, makeup brushes, etc.. as well as the contacts and solution.

I'll keep you updated. Thanks for listening and thanks for all the great information that is here for us to read - I really appreciate it so much!

[presh]

Also - does anyone have any good tips for the swelling?? That's bothering me so much - I hate the way I look! Thanks!

[presh]

changing course........

well, I've changed the route I'm going on for now - quit ALL medicine eye drops, etc and taking Elavil and increasing dosage every 2 weeks.

I'm really thinking I don't fit into any of the categories (post-lasik, MGD, allergies, etc). My doctor said they saw GPC on my upper eyelid but this should NOT be causing the type of pain I've been having.

I think I am focusing on it too much.

[presh]

well, just for sh$$s and giggles I decided to try and "express" my meibomian glands tonight when I got home from work. After a glass (or two) of wine and my husband holding a mirror outside - I took 2 q-tips and tried to get something out of them. Nothing. Nil, Nada. ?? I also tried the olive oil under each eye last night. No real relief except I couldn't keep my eyeliner on today. I've also noticed since I've been on the Omega 3's for about 3 weeks my face is extremely oily.

I have another doctor's appnt tomorrow and after searching and reading these forums I am trying like heck to come up with something to go on. Ocular rosacea? Meibomian dysfunction? Orbital pseudotumor? Allergies? GPC?

I am stumped. Anyone have any good suggestions for me? So far Margaret's story sounds the most similar to mine.

But at least I have lots of questions to ask him tomorrow and for this I am thankful.

My main symptoms are swollen eyes, inability to wear contacts because of headaches, etc.

[presh]

well my eye doctor said I have no corneal staining so really no dry eye. I have very limited conjuctiva & pappila on my left eye, but nothing really to explain the severity of my bilateral eye pain, swelling, and dry feeling.

Anyone have any suggestions????

[RonnieD]

Hey presh, how are you doing? Your symptoms appear to be the same as mine, which started 14 years ago after catching a cold - and 8 months after concluding a cycle of Accutane; did you ever take that?

I have tried what seems to be almost every possible solution over 14 years, none of which has helped. I recently was prescribed a 5 day cycle of prednisone so I was disappointed to learn you tried that and had no sustainable improvement.

Are you doing any better?

[sazy123]

This was a while ago, but allergies sounds very possible. Or it could have been the viral infection that started a cycle of inflamation off. Watch this video on how this visious clycle is self-sustaining http://www.trbchemedica.com/index.ph...=100&Itemid=61 in dry eye.

For the headaches- i used to get sinus pain- the majority of headaches actually come from the muscles in the kneck and face. You have to find the lumps and massage them (called trigger points). Look in to it. I curred my face pain this way.