I cant see an end to this hell

[littlemermaid]

Nutteetart ~ that's great, we sorely need someone with good emotional health experience - there's so much learning to be done, I am struggling with all the waffle - quite like this website though http://psychcentral.com/ and this was more useful than I thought it would be http://www.huffingtonpost.com/2013/0...?utm_hp_ref=tw What do you think? do you have any other recommendations?

[nutteetart]

I am sorry if i have worried anyone. i can assure you that i am extremely well up on mental health and i am in no way suicidal. i am just desperate to find some help.
I have had sound advice on this forum but until i can find some answers, i am not in a great position to support anyone with positive words.
I will continue to read and learn from you.
Thanks again
Nutteetart

[littlemermaid]

Hello NT, I would make a GP appointment tomorrow to talk about all of this and put together a plan. Job 1 - another urgent referral for depression, anxiety and support counselling. Possibly a home visit http://www.nhs.uk/livewell/mentalhea...ealthhome.aspx We can chat PM about eye docs if you like.

It's a worry that you haven't quite found the help to suit you but there is so much out there now for this even through NHS so best explore some new solutions. Some people treat the search and healing skills as a job so it might help you to think that way. These emotional literacy and coping strategies are certainly useful for work in future, if you're thinking of that. It can be a joy to find other people dealing with the same conditions for mutual support and useful suggestions, especially for anxiety and agoraphobia (my friend is working on this too after years on psychotropic meds in the '90s and doing well with physical relaxation techniques). Maybe you will become a bit of an expert...

With your business skills, seeking out voluntary work might keep you busy when your eyes are feeling better and body is healed from the surgery. You would have so much to offer.

Maybe introduce the long suffering husband to Dryeyezone? He needs info too and what's available to help you both.

Love (hugs)

[nutteetart]

I dont know how to go about it.
The opth said that unless we find the underlying issue then we are stuck and fom my little knowledge, he is right
but what now? Do i see gp, dermatologist, gynae (i have just haf a full hysterectomy so are hormones to blame)? On top of all this i am an anxious wreck. My hormones are on the floor and i am depressed. i dont even want to get up. cant see :'(

Do not loose hope. There IS much that can be done. There are many many many treatments for many many many conditions. I remember thinking that the doctors had run out of things for me to try and what else was there but to take my eyes out. But no, like littlemermaid says, you just haven't found the right doctor. If the one you are seeing is unable to diagnose, which is half the battle, then why not see someone that littlemermaid recommends. lm has a very good handle on this.

[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.

[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

[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

[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.

[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.

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?

[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

[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]

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

[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.