I cant see an end to this hell

[lizlou29]

Same for me today.

I'm going to listen to an audiobook to try and take my mind of things, it does help me.

Tomorrow is another day as they say, wishing you a better one.

[No tears in ATL]

Ice packs applied for 15 minutes always help me during flareups. I know that's not the most sophisticated advice, but it seems to work better than all the steroid drops in the world sometimes.

[abbygirl]

Sorry you are having a bad day nutteetart.. I am really wondering if this has a strong hormone component. I would get to your doctor and see if he/she can start you on some HRT. I would also question the treatment with only Estrogen. Females still need Progesterone even after a hysterectomy. The key is to replicate the natural cycle. I am not an expert but have done lots of research for myself.
I agree that cool compresses help when things get really tough. I fill knee-high pantyhose with rice and keep in the freezer. I have 3 or 4 in mine at all times!!
Hope you are feeling better tomorrow.

[L8rgator]

I can sympathize with you also. After this discussion about hormones, I remembered I haven't been cycling 3 weeks on, 1 week off on the progesterone cream like I'm supposed to. It was working, so I didn't want to mess with that. But then somebody said you do that to lower some cancer risk. So 3 days ago I cycled off. OMG worst days ever for my eyes since I was first seen for the problem. Yesterday I was so depressed about my eyes I cried for 2 hours straight when I woke up-which usually actually helps my eyes, as did the rain here a bit - but they were still very miserable.

So I guess I won't be cycling off the progesterone cream.

[Katewest]

I think hormones might be a factor for me. I've been on birth control for 6ish years and the last two was low dose Apri. I'm off now so I can get better testing results at my next hormone appt.

[Peppermint]

I only use the progesterone cream from day 14 to the day my cycle starts. I haven't noticed an issue going off the progesterone every month. Did your dr tell you to cycle off? If you still have your cycle, you are not supposed to supplement with progesterone the first half of your cycle bc your body naturally produces progesterone from ovulation until day one of your cycle. I also wanted to add that I do notice my eyes are at their worst just before the start of my period, when estrogen and progesterone is at it's lowest so I definitely think that hormones are playing a role.

I can sympathize with you also. After this discussion about hormones, I remembered I haven't been cycling 3 weeks on, 1 week off on the progesterone cream like I'm supposed to. It was working, so I didn't want to mess with that. But then somebody said you do that to lower some cancer risk. So 3 days ago I cycled off. OMG worst days ever for my eyes since I was first seen for the problem. Yesterday I was so depressed about my eyes I cried for 2 hours straight when I woke up-which usually actually helps my eyes, as did the rain here a bit - but they were still very miserable.

So I guess I won't be cycling off the progesterone cream.

[nutteetart]

Thank you. I had a better day but my face still stuck in a grimace. i have new wrinkles and i feel very sorry for myself. im feeling like i did a few years back when i was really low. i am almost hoping its all to do with my new hormonal status. being on estrogen only hrt must have some impact! I am due to have my levels checked in the next few weeks so it will be interesting to find out.
I am truly scared i will be partially blind forever. i couldnt even get a job right now.
I hope u r all doing better today x

[littlemermaid]

http://dryeyedigest.blogspot.co.uk/2...en-levels.html There is work on hormones and dry eyes on its way now, thank goodness. Our derm Prof was talking about androgens clogging the sebaceous glands etc when my d. started MGD at puberty. Different aetiologies though. There might be more in PubMed, if you haven't searched there yet, Nutteetart. Also, Medscape can be good on summarising current thinking (register to read some of the site). Difficult stuff for most ophthalmologists, I guess, but then the eyes are attached to the rest of the body and mind, especially fluid-wise.

[nutteetart]

Hi Little M!
Thank you. i will have a look but in the meantime ive scared myself into thinking i may have blepharospasm. Does anyone know about this please. its a silly think to self diagnose but im desparate for help x

[NotADryEye]

nutteetart, littlemermaid posted the name of a doctor in London to another DEZ member. I don't know about your healthcare system to know if you can see him, but as per his website, he has a lot more tools in his dry eye toolkit than most ophthalmologists. Maybe you can see him?

littlemermaid, maybe he could help nutteetart? What do you think?

[littlemermaid]

NotADryEye, I don't know David O'Brart but he's in the dream team http://www.qvh.nhs.uk/events/index.php?id=10045. Macio1981 likes him http://www.dryeyezone.com/talk/showt...ight=O%27Brart

It's really about who people like and can work with, I guess. Contrary to our Ophth's belief, we have not 'been round everyone'

Nutteetart has got QVH and Moorfields within access too.

Our 'healthcare system' is just as crazy as anyone else's in its own special way. People like different docs. As a kind GP told us in a meeting last night, despite the science, much of medicine and especially treating people, is an art.

[littlemermaid]

Nutteetart ~ do you think you are squinting to be able to see? sounds basic, but are your glasses up to date? maybe your vision fluctuates with the eye trouble. I think blepharospasm is a pretty obvious neuro twitch.

[MLE]

Nuttyeetart-

So sorry for you and all I can say is to tell yourself that this will get better, because it will.

Testosterone plays a major role in dry eye, and much research as found that it is the culprit in many menopausal women, not estrogen and progesterone. I would urge you to make sure your OB/GYN performs a FULL testosterone profile on you, and to start supplementing if you you are low. It doesn't work for everyone, but it makes a huge difference for some.

Best of luck,
MLE

[nutteetart]

After being told yesterday that if the latest meds dont work then thats all the opth can do unless he knows the cause, im so upset. No mention of moorfields or anything. It didnt help that my eyes were quite good yesterday while no. 3 opth was looking so has no idea that i cant work like it most days.
As for the squint..no pro has mentioned bleparospasm and i dont know much about it. its hard to know because if the eyes are good the squinting better and although i sometimes blink almost uncontrollably at times, my gp said it was a tic but it seems to follow how bad the eyes are so if eyes sore then squinting and blinking worse.
I am keeping a diary at the mo to see if i can see a link.
Im truly falling apart. My life is at a complehte standstill. if my anxiety doesnt get me then my blindness will.
X

[littlemermaid]

thats all the opth can do unless he knows the cause

Happiness is... finding doctors who are interested in the conditions we are dealing with, so we can work together.