Feeling hopeless and scared....

[lizlou29]

I think this flare up was triggered by the sleep med I'm taking as it can act as a vasodilator.I have to try and come off it slowly. I had 3 years without flushing until a few weeks ago, and could eat anything, drink anything and wear make-up without any problems so it's incredibly frustrating. I woke up this morning with a flush and it's only just gone and now I'm freezing cold - this seems to be the way it works.

I will try and see if any particular food is making me flare now but mainly it happens when I eat or drink something hot. I've never had p&p, just the flushing. I will definitely buy the book, if I can even make a small improvement it's worth it.

[littlemermaid]

Lizlou, Is that your Seroquel? I think you need to be careful because it's your antidepressant. You need a lot of support first x

[lizlou29]

Yes, it's the Seroquel. I use 50mg for the sleep effect, it doesn't have an an anti-depressant effect at the dosage I take. I'm not on an anti-depressant yet. I need to be I think but putting it off because of the drying effects. I'm going to speak to my GP on Monday to see if she can help get the counselling moved forward as well.x

[bakunin]

Hi lizlou,

I can relate to everything you have described in the first post, as well as most people here, I think.
I understand perfectly what you mean by feeling worse when you left the appointiment with the psychiatrist. When a doctor don't undestand what we feel they probably make things worse. Even ophtalmologists don't se to understand what really is having severe dry eyes symptoms.
Some days ago I went for the first time to a psychiatrist. He listened to me, didn't say amost anything and gave me the precription of two antidepressants (I went to him becausa of my chronic fatigue). I'm not taing them because I'm afraid they may worsening my dry eyes.
Next month I have an appointment with a ortomolecular doctor (don't know if it is the name in english). It is not cheap but it could be a way of treating your sleeping problems (and even teh dry eyes,, who knows?), in a more natural approach.

I wish you the all the best, full-heartedly

[Tanner]

For sleep you can try ashuganda tea (spelling) or warm milk. These things sound like they can't help but sometimes they do. I had a horrible reaction to ambien and ended up in the er. Valium can help you sleep and it is fine with my eyes as far as I know. It works on gaba a different area of the brain. It can also calm you down. I have another illness that is painful and take it regularly.

[Guest]

I will try and see if any particular food is making me flare now but mainly it happens when I eat or drink something hot. I've never had p&p, just the flushing. I will definitely buy the book, if I can even make a small improvement it's worth it.

I'm excited for you that you're buying the book - his rosacea diet is crazy drastic, but that's the beauty of it IMHO... it really makes you THINK HARD about every single thing you put into your mouth and you can't help but notice stuff that was easily lost in the shuffle before. Crossing my fingers for you that you discover something helpful in it!!

Just be sure that when/if you try his diet, you do not change anything else in your life - don't change meds - don't change eyedrops - don't change the amount of computer time/reading/TV time - don't change how much you sleep - don't change anything else - that way you'll better able to determine if the diet makes any difference for your eyes. If you want to change anything that might affect your eyes, do it now, a couple of weeks before you start the diet.

[lizlou29]

Bakunin - I know that the few anti-depressants I've tried increase dryness for me but my psychiatrist said he doesn't think they would have this effect and will give me motivation to exercise and socialise more. He definitely thought I was worried about my eyes more from a cosmetic point of view rather than that they are incredibly painful. I gave up trying to explain that I'm usually in so much pain that a trip to the shops is an achievement. It's a very difficult thing to explain. I know there are natural supplements that can help improve mood and I would ra than her go down that route in combination with counselling.

Tanner - I tried both Ambien and a few benzodiazepines. All were awful for me and caused rebound anxiety. I'd never experienced anxiety before and it was a truly horrible feeling.. I've tried hypnosis and herbal supplements but I just can't switch off at night even when I am extremely tired. My mind just won't settle.

SAAG- It will be interesting to try. I haven't flushed today and haven't been eating particularly healthy food plus I went out in the sun earlier. It's just very random.

[Guest]

I haven't flushed today and haven't been eating particularly healthy food plus I went out in the sun earlier. It's just very random.

Sounds like me before I tried the rosacea diet in that book... my flare ups seemed completely random to me too. But now, that's no longer the case and I can pretty much always pinpoint what caused a flare up.... hoping you'll figure it out too!

I now think of my rosacea as having a whole bunch of triggers that can flare it up - each trigger is a contributer, and if the sum of all triggers I've been exposed to reaches beyond a certain level, I'll have a flare... So maybe I can tolerate 3-4 triggers in small amounts at once and not flare up, but if I had 10 of them, I'd flare... or maybe a giant helping of one trigger would flare me up, but a smaller one wouldn't etc. This would explain why sunshine might cause a flare one day, but not the next. Maybe sunshine plus a few food triggers plus wind will trigger a flare, but if the only trigger is sunshine, you won't flare up etc.

So, I suspect it's not random at all... it's just that there are some other factors that you aren't aware of yet that are affecting it - if you know what THOSE are, things will no longer appear to be random.

[spmcc]

Lizlou -- I wanted to mention that there's an oral med for flushing/blushing. It's called clonidine (there are also others). I take 50mcg of clonidine twice a day. It doesn't work for *all* triggers (I have a lot of food and environmental (temperature, wind) triggers).

Anyhow, the reason why I mention clonidine is because it can also help with sleep and anxiety. But it is drying (my mouth goes completely dry for a while after a dose).

As I believe others have mentioned in this thread, there's a balancing act between a treatment helping one thing and harming your eyes. But it's something you could perhaps try with a doctor's guidance and your attention to drying side effects.

Good luck.

[lizlou29]

Well I had to go to the eye clinic this morning as I woke up with slightly blurred vision in my left eye and eyes still extremely sore. I saw yet another different opth. He told me he can't see why I was in so much pain and he couldn't see a cause for the blurred vision. I told him I had a schirmer's of 0 and 1 and he said "oh that is quite low, so that could cause some discomfort" (no kidding!). He felt that my best bet was to wait for the appointment next week with the consultant so that he can do a more thorough assessment. He suggested eye drops (which I already have) and a short course of preservative free steroids which I'm hoping will provide some relief.

spmcc - I did ask a (private) dermatologist about clonidine as I had read about it but she was more keen on pushing products that her clinic sells. I will look into this but obviously wary about the dryness. For now I'm trying to protect my skin as best I can by trying to keep in a cool environment and not having hot drinks or hot food. I never flush through embarrassment or nervousness (trying to look on the bright side).

[Lacrima]

Hi lizlou29

I noticed you live in UK. Are you happy with your current medical attention? If not, have you considered going to Moorfield's eye hospital? You pay for initial consultation but then they write a referral to your GP. I know what it is like to run around to different NHS ophthalmologists without much conclusion.

[lizlou29]

Hi Lacrima.

I am going to wait to see the consultant at my current eye clinic as they are meant to be doing a full assessment but if I'm not happy after that I will move onto Moorfields.

[Lacrima]

Hi Lacrima.

I am going to wait to see the consultant at my current eye clinic as they are meant to be doing a full assessment but if I'm not happy after that I will move onto Moorfields.

That's great they will do a full assessment. Good luck at your appointment, hope you feel much better soon!

[littlemermaid]

http://www.moorfields.nhs.uk/Aboutus...ooseMoorfields Just to clarify, all that's needed in UK NHS is a referral from a doctor or optometrist.

We can still NHS Choose and Book anywhere within the system to see specialists. http://www.chooseandbook.nhs.uk/patients/choosing-your If the GP or local ophthalmologist does not see a case for referral, perhaps because of lack of knowledge about the conditions and treatments or problems with the CCG referral committee, contact the regional Patient Liaison Service (PALS).

There are, of course, mighty fine NHS regional teaching hospitals with specialist eye clinics where the latest treatments are in place, hopefully coordinating our care and sharing notes with the other specialisms in that hospital, and working with the GP, particularly if the condition is systemic or there are support service needs like counselling or social care.

Again, if there are problems with NHS access, the website lists the ophthalmology consultants and many are to be found in private practice in the NHS hospital private wing, with the 24/7 NHS backup.

Where NHS consultants are working in private practice in (outpatients) or for (inpatients) private hospitals, there is no 24/7 backup or NHS guarantee on standards or access to eg NHS lab support system, and day surgery, or whatever insurers will cover, is often the core of their business. The NHS decides what problem results it is willing to rectify or support (eg PIP scandal).

Some procedures are available NHS in independent providers though.

Paying Moorfields Private or just turning up at NHS A&E for assessment would be plan B.

Please post up if this isn't quite the right story currently.

[lizlou29]

I guess right now I feel a bit deflated after the opth couldn't understand why I was in as much pain as I am. I know I shouldn't let it get to me. I'm going to focus on compiling the questions I have for when I see the consultant, as it's a full assessment I should have a bit more time. I've been given prednisolone steroid drops to use for two weeks but he didn't seem that confident they would help, I guess I won't know until I try them. Had pressures checked and they are fine.