New here and desperate

[dominorose]

Hi,

I'm a 25 french girl, and I don't know what to do anymore. I have dry eyes since september 2013, but it was manageable with eye drops. I went to Prof. Baudouin service in march and they just gave me Optive and Aquarest to take.

What is really surprising is two weeks ago, the dryness worsened. I went to my ophtalmologist who gave me Vismed (apparently stronger than Optive), but every time I used it I had a burning sensation. My mother told me to continue my treatment because she thought this burning feeling was bc my eyes were healing...

I used it twice a day from wednesday to yesterday with no improvement, and in the meantime my right eye became to feel dryer and dryer, and so painful : to the point I just couldn't open it anymore.

So today I went to the urgencies of the Quinze Vingt hospital. I met an "internal" ophtalmologist (don't know the right translation in english I'm sorry), and he told me I had an allergic conjunctivitis.

I started the treatment this afternoon, but I am really anxious because I've read everywhere antisthaminine drops could make my eyes even dryer... And also that a lot of ophtalmologists mistakenly diagnosed conjunctivitis instead of dry eyes... I'm so scared.

I spent all my days in a dark room with my eyes closed. I can't do ANYTHING and start to feel suicidal. It hurts too much.

I have an apointment with my endocrinologist tomorrow because I haven't checked my thyroid for a long time and read dry eyes could be related (I take Levothyroxine for ten years now). I really hope I'm into something...

And for the record, I don't know if it could be related but I had anorexia for 4 years (I am recovered since June 2013), I had amenorrhea for 4 years too and get my periods back in march this year...

Thanks for reading and for your time

[dominorose]

Someone here? I feel really bad. Should I continue the treatment for the allergy? I'm on day 2 and feel a little bit better but maybe it's in my head I dont know. I take Naabak and Levofree and I'm so scared they will make my eyes drier !!!

went to my endocrinologist this morning, he told me it could be Sjogren's syndrome (I have Hashimoto hypothyroidism), so I have blood tests to do. I'm really anxious and scared

[LaDiva]

Hi Dominorose,
I am sorry to hear you are experiencing dry eye. I hope someone with Hashimoto's will post for you. I know thyroid problems can cause dry eye problems, and that with medication it can be relieved, but I don't know anything about Hasimoto's.) Also, you mentioned being very thin, so you might ask your doctor to check your hormone levels as well. Best of luck to you. It is hard waiting for all of those tests!

[dominorose]

Oh thank you for your answer LaDiva I felt so alone. Im not "too skinny" anymore, but in the normal range. I really hope I don't have Sjogren's because it seems impossible to cure. I have a constant pain for 15 days now with just 1 or 2 hours of relief daily and feel more and more hopeless and suicidal.

The only thing that helps is chewing gum all the time...

[cathy8889]

Hi domino rose,

I'm so Sorry you're having such an awful time but please remember things will get better. Please don't feel like you are alone, I felt like that as non of my friends really understood how awful the pain is, but there are lots if people on here who have been were you are now. I felt so hopeless about 9 weeks ago and that life wasn't really worth it, I still have my feeling hopeless days, having one today!

I don't know if I can help much because I still finding my feet with all this dry eye business myself. I don't know anything about allergic conjunctivitis, I just read a page on it and it says it use effects both eyes but the symptoms are pretty close to dry eye symptoms. If it were me I'd probably use the drops for a little longer and if there was no change go and see a different olphalmologist for a second opinion. Ive seen three ophalmologists and it was only the third that told me I had dry eye and that was because my optician spotted it I think. Specialists aren't always right I have learnt.

Did the first olphalmologist you saw diagnose you with allergic conjunctivitis or did he just diagnose dry eye and if so did he tell you which type of dry eye? I didn't know there were different types until I did some research and am still waiting for clarification on which I have, I'm guessing its a mixture of aqueous tear deficiency and mgd.

I hope you're doing a bit better today, hopefully you will get some more replies after the weekend.

Cath x

[cathy8889]

Sorry about my awful grammar and spelling! x

[dominorose]

Cathy your grammar is perfect, thank you so much for your answer. I continue the treatment for the conjunctivitis yes, I just hope it won't create further damage ...

I have an apointment with another ophtalmologist tomorrow so we will see. What is really surprising is none of the 5 ophtalmologists I've seen in 8 months gave me a diagnosis! I have a light rosacea on my cheeks so it could be ocular rosacea, or Sjorgen's, I don't know what to do anymore.

[dominorose]

Oh and to answer your question no, the first ophtalmologist told me it was "just" a "light" ocular dryness..... Thats why I'm lost

[peter56]

Bonjour Dominorose,
s'il vous plait ne soyez pas frustrés dans cette très stade précoce dèvos problém oculaires.
Plus le patient s'il vous plait!

Wrighting in french at an english website is not so easy.

It seems that your english is very well, so you may have no problems reading english articles on allergic conjunctivitis
- dry eye etc.

http://www.ncbi.nlm.nih.gov/pubmed/23998237

http://www.ncbi.nlm.nih.gov/pubmed/23497516

http://www.ncbi.nlm.nih.gov/pubmed/23281793

http://www.ncbi.nlm.nih.gov/pubmed/24699261

and an older one of 2007 from Prof Baudouin

http://www.ncbi.nlm.nih.gov/pubmed/17411759

All articles are full text for free. Please click onto the provider logo - to get the full texts!
Two of these article also do contain photogr and stating symptoms, so you may be able getting a better
Impression of your condition.

Most important is to get a correct diagnose!
The first stepp is getting 4-5 TF-BUT measurements done!
The tear-film-break-up-time is the most important diagnostic tool.

So please ask your ophthalm or opticien to take one BUT every few days and that 4-5 times.

Anti-histaminika, Mast cell inhib. steroids etc. to treat the allergic reaction are working very well.
But please don't take steroid drops, only steroid gel or even better an ointment!
Steroid drops in dry eyes can cause severe Problems.

Since an allergic reaction or another factor caused a severe disorder of your tear film,
you will have to apply protective gels-eye drops every 20 min. and an ointment for the night.

Please try also wearing a gel mask during the nights.

If your corneal epithelium is getting irritated, please apply Thealoz-Duo drops from Theapharma in France.

Peter

[dominorose]

Hi Peter, thanks for your answer and links. I have an appointment with an ophtalmologist tomorrow I will ask him to make those tests or to give me the name of a dry eye specialist bc Dr Baudouin seems to be really full and I don't know any other specialists in France.

In the meantime, I'm really wondering if it's not the conjunctivitis making my eyes so painful and so dry?
I have some questions about my situation:

- my inner underlids are really red but my cornea is normal (white with blood veins but as far as I can remember they have always been like this)

- hot compresses seems to make things more painful and burning

- yesterday a blood vessel burst in my left eye and is quite painful

- i can see my eyes kind of watery but they tear a lot

I see an ophtalmologist tomorrow for a second opinion, but what do you think?

[peter56]

Hello Rose,
dry eyes do always cause a conjunctivitis!
A severe ocular allergy is causing a break-down of the very complex tear film system.
A unstable tear film does mean no more protection of the corneas-ocular surface from the up and down
moving eye lids thousands of times every day. So these mechanical irritations do increase the inflammatory condtions.

The insufficient fetty-meibum and mucin layers can't stabilize the tear film on the corneas anymore.
In order to protect the corneas from the rubbing, the eyes then trying to protect the corneas by tearing all the time -
watery tears, but that doesn't work.


The white in the eyes is the conjunctiva-sclera, not the Cornea.

You will find the article on ocular allergies from Prof Baudouin in French at:

http://www.ncbi.nlm.nih.gov/pubmed/17417159 - click onto the logo!

Please ask your ophthalm for a Steroid ointment prescription -
pommade anti inflammatoir cortisone 1% or even 2.5%
The best brand is Hydrocortison POS N 1%-2.5% from Germany.
Please place the steroid ointment not only into your eyes, but also onto the lids at the lid margins to get the
inflammations under control.

If you do really suffer from a ocular allergy, then anti histamines and mast cell stabilizers are absolutely neccessary!


Please don't apply steroid drops!

Beside suppressing the inflammations it is neccessary applying as much as possible of gels and ointments, to complete -
substitute the insufficient tear film.

If the allergic reaction - inflammation is under control, then you may try to restore the tear film - meibum - mucins etc.

[dominorose]

I thought I shouldn't use steroids??? I don't really understand...

[cathy8889]

Hi DominoRose

How did your appointment go with the olphalmologist? Was he able to shed any more light? Hope they could help you.

Best wishes

Cath

[dominorose]

Hi Cath, thx for asking!
So the ophtalmologist confirmed it is a conjunctivitis, but ALSO occular rosacea. So now I understand better why the warm/hot compresses made my eyes burn so much... I just don't get WHY none of all the ophtalmologists I've seen in the last weeks told me heat could worsen the inflamation... It's like I have to work for them.

She told me to continue my antihistamine treatment and to add VEXOL drops each night for 5 days. I don't know if I could take this, is it safe?

[dominorose]

Hi there,

I'm totally lost. Do you know a french ophtalmologist specialised in dry eyes in Paris?