Just started PRP serum....

[unicorn]

On coping, anxiety etc, I like Oliver Burkeman 'The Antidote' and Paul Gilbert 'The Compassionate Mind'. Hopefully people will post up some more recommendations.

I also loved 'The Antidote' - subtitled 'Happiness for People who can't stand positive thinking' -that's me! Oliver Burkeman a very sensible & intelligent chap.

A book which has been very helpful to me recently is 'The Relaxation and Stress Reduction Workbook' by Martha Davis et al. Lots of useful things here: visualisation, focussing, progressive relaxation, coping skills, mindfulness etc. It's putting it into practice which can be the hard part but it's useful to dip into when things are bad.

[unicorn]

I use blephasol to clean my eyelids in the morning and at night.

Lizlou do you think you may be sensitive to the Blephasol? Have you tried just using plain boiled water to clean your eyes? I find my eyelids get very sore & red if I overdo the cleaning, even just with water, and this adds to the overall level of pain in my eyes. Sometimes when the skin is getting very sore I have a break from cleaning them for a few days - but I find that dandruff-y flakes develop, so I go back to gentle cleaning. For the last month or so I've been using very dilute tea-tree oil shampoo in the mornings (using a cotton bud to get right into the lash roots), and plain boiled water in the evening. My lids aren't quite as red as they have sometimes been (although still suffering with sore, dry eyes.. )

[lizlou29]

Steveyez - I am hoping to hear back from Dr. Alio soon. I emailed him Tuesday morning.

My Schirmer's is 0 and 1, my TBUT has been given anywhere from 3 secs to 15 secs in the past few months. I've had to stop using the serum. I'm going to try a new bottle on the weekend.

I use blephasol to clean my eyelids in the morning and at night.

I'd hate to think I've wasted time and money on something that should be pretty harmless even if it doesn't help!

[steveyez]

Liz

I would consider myself a triumph allbeit very much still a work in progress

I was in chronic corneal neuralgia pain caused by dryness in my eyes ( schirmer test 0 and 1.5 ) that no matter what form of treatment I took the intense pain would not stop day or night.

I went over to Alicante in May and saw Doctor Alio at Vissum and have been back 3 times since.

It took me 4+ months of taking the PRP Autologous Serum for the pain to really ease and for my eyes to start to feel more comfortable. But i have to say that the effect for me has been a dramatic improvement in quality of life. It took quite a bit of time to kick in and even now things have some way to improve as my eyes still feel dry but i need artificial tears a lot less than i used to.

I agree that the PRP does cause crusting around the eyelids but ive had no eye infection at all even though i have blepharitis and rosacea and used to get infections all the time about a couple of years ago. Ive found using blephaclean wipes for the blephairitis a real big help as opposed to using the old fashioned Johnson baby shampoo treatment and belphaclean does help keep my eyelids clear of debris.

I use each bottle of PRP for a maximum of a week once i take it out of the freezer and keep it refigerated. I had similar experience to you where i thought i had broken the cold cycle but Dr Alio emailed me back quite quickly to reassure me that as long as the drops had not been frozen then they were fine on the airplane journey back to the UK.

But with eyes and medicine in general it does seem to be that we are all unique and what works for one of us does not necessarily work for all of us. Because of NHS funding issues i have not been able to try Autologous Serum but i would personally recommend Dr Alio and PRP if like me you have chronic corneal neuralgia and other treatments were not helping.

Take care
Steve

[lizlou29]

Ophthalmologist at my eye clinic called me back. Hadn't heard of PRP serum, knew what autologous serum was. Told me to stop using it if I think it's irritating my eyes, wait a few days and see if they are better. If I think i have an infection to use the chloramphenical I already have and to call again next week if not better. Not great when I have no idea what is going on with my eyes, they are getting 'gunky'. Will just turn up there tomorrow if it's not better. Wish my regular ophth wasn't away

[lizlou29]

Yes, we snack on nuts for minerals and dried fruit, plus I use only sea salt (small amount) in cooking. Not sure how that pans out on iodine though. Still like a good oil salad dressing.

How difficult to get your eyes comfortable.

Good to try different things to heal the whole body. On coping, anxiety etc, I like Oliver Burkeman 'The Antidote' and Paul Gilbert 'The Compassionate Mind'. Hopefully people will post up some more recommendations.

What has really helped on overwhelming anxiety is taking time out for 10 very slow and conscious breaths and concentrating on letting out what could be called 'toxic thinking' (you can develop to pranayama, as seen on YouTube, if you like that). Continue allowing thoughts to bubble up and leave. This can be a massive help to sort your head out if you are a 'high octane' personality and doesn't take long.

If anxiety in consultations is a problem, you can train yourself to trigger the 'stepping back and clear your head' feeling during the breathing, eg I pinch thumb and 3rd finger on left hand together, which works for me for some reason. Some Neuros are actually quite into this, but are not allowed to say so at work, lol.

I'm more slow-burn so random useful activity is my antidote, but the 10 breaths allows me to accept the magnitude of the problem and think more clearly about solutions. Quite difficult to find peace with all this going on, but if you can, it makes things more manageable.

Hope you feel better again soon.

I don't really have an issue with anxiety, strange considering the constant pain I guess. I've had problems with sleep for 10 years on and off so that's what I needed meds for this year. Luckily that has got a bit better now. Will never take sleep meds again, definitely not right for me.

I've always been a laid-back 'deal with anything' kind of person but it's hard to keep pushing to get answers when you are in constant pain and very few people understand the pain. I used to always be on the go but now if I'm not struggling through work I'm at home. I've stopped talking to quite a lot of friends because they don't understand why I'm not suddenly getting better. I just get comments like "i thought you were having treatment for that though" and "you must be used to it by now". I have sent articles on dry eye to a couple of friends so they can understand better but still get the "can't you use Optrex or something" comments.

I think if I were to have normal eyes and suddenly wake up with this level of pain I would freak out but I'm learning to plod along and try not to talk about it all the time with family, colleagues etc.

Today feels similar to when I had conjunctivitis once when I was a kid. Very sticky eyes which I never normally have. I want to stop the PRP serum for a bit but was told it takes at least 10-14 days to have any noticeable effect so if i start it again in a few days time i'll be starting from scratch. It feels like it's clogging the MG's up, not sure if that's possible.

How do you learn to cope with a pain that is different everyday? It seems almost impossible. Sometimes I can go out for an hour or two and I get my hopes up that I'm turning a corner then the next day I wake up feeling with soreness/aching etc, I never know what i'm going to get each day. Everyone is looking forward to the Christmas break but when you don't get a break from pain nothing is that enjoyable.

[littlemermaid]

Yes, we snack on nuts for minerals and dried fruit, plus I use only sea salt (small amount) in cooking. Not sure how that pans out on iodine though. Still like a good oil salad dressing.

Good to try different things to heal the whole body. On coping, anxiety etc, I like Oliver Burkeman 'The Antidote' and Paul Gilbert 'The Compassionate Mind'. Hopefully people will post up some more recommendations.

What has really helped on overwhelming anxiety is taking time out for 10 very slow and conscious breaths and concentrating on letting out what could be called 'toxic thinking' (you can develop to pranayama, as seen on YouTube, if you like that). Continue allowing thoughts to bubble up and leave. This can be a massive help to sort your head out if you are a 'high octane' personality and doesn't take long.

If anxiety in consultations is a problem, you can train yourself to trigger the 'stepping back, relax the shoulders and clear your head' feeling during the breathing, eg I pinch thumb and 3rd finger on left hand together, which works for me for some reason. Some Neuros are actually quite into this, but are not allowed to say so at work, lol.

I'm more slow-burn so random useful activity is my antidote, but the 10 breaths allows me to accept the magnitude of the problem and think more clearly about solutions. Quite difficult to find peace with all this going on, but if you can, it makes things more manageable.

Hope your eyes feel better again soon.

[lizlou29]

I don't actually know if he has a supporting optometrist, I forgot to ask last time. His secretary is brilliant so I will give her a call otherwise I'll get Nurse-zilla calling me back at 5pm saying "do more warm compresses" blah blah blah.

For the PRP they just said to keep them in the freezer up to 3 months, take 1 bottle out at a time and keep in fridge for up to 7 days. Two of the bottles had come away from the freezer block during transportation so I threw those out to be on the safe side. I've emailed Vissum for advice but no response as yet. They were brilliant when i was there so hopefully they'll come back to me.

Was on and off the sleep meds until August this year so you may be right. I'm not taking any medication aside from Doxycycline now. My GP noticed my hair loss before I said anything but she just won't treat thyroid when TSH is 5, so I'm seeing the endo again. She said to make sure I eat lots fruit and veg to get right nutrients which i'm doing anyway so I don't think it's a mineral deficiency unless I'm not absorbing things properly. The endo is not particularly great I don't think but I should be able to get the antibodies test through him seeing as I'll be paying! I've been getting pain in both knees and elbows the past few weeks on and off. I'm worried it's Sjogren's but the rheumatologist ruled it out from negative ANA and RF plus low inflammatory indicators so my GP said to wait for a while before she'll refer me to him again. I know joint pain can occur with Hypothyroidism though (my mum had joint pain). I don't have a dry mouth at all. I've also been getting sinus pain mainly when I lay down but occasionally in the daytime, my GP said she's never heard of anything like that at all, I think she thinks I'm going mad, I feel like I am sometimes!

[littlemermaid]

Cold compress. He has a good Registrar or Optometrist though? I'd stick with the team, if at all possible. We love a good supporting optometrist. Phone secretary to avoid Nurse-zilla. When we've had infection, there's been yellow gunk first thing in morning. He'll be back soon. It's so reassuring and professional that he tells people where he is.

What instructions did they give for the PRP safety?

NHS hypothyroid info above, p2, says that anti-anxiety meds can set things off, if a printout would help with the endo or GP. You're doing great battling with this. These conditions are not widely recognised or understood in the medical community. We are the lucky ones.

Thanks, Lizlou, but it would be great to hear you're out there having fun again ~ I don't get out much these days but the actual Littlemermaid is taking 5 A levels now, mostly sciences, plus voluntary work with children This is possible because she has extraordinary docs like yours for help with flareups and maintenance problems while we try to work out what's happened to her eyes.

Hopefully soon patient mutual support groups will be the norm in hospitals too. Does your hospital have an Eye Clinic Liaison Officer?

[lizlou29]

*Take (not order)

Just to say Littlemermaid has been brilliant with practical advice through PM's when I know she is so busy herself.

Worried I may have infection from the serum. My eyelids are very red and swollen but my eyes aren't bloodshot. How would I know? May have to bite the bullet and see someone else at the eye clinic just to check there isn't a big problem.

[lizlou29]

I've had an initial consultation with a pain management specialist and I've been referred for CBT. Was referred in July so it's taking time. She wanted me to order gabapentin but admitted she'd never had anyone referred to her with dry eye pain before.

I'm going to see the endocrinologist next week and get a thyroid antibpdies test done. NHS lab refused it as TSH was only around 5 at the time and my GP gave no reason for it.

Still using the PRP but my eyes feel worse. Really notsure what's going on . Unfortunately my ophthalmologist is overseas right now and the only other consultant at the clinic thinks dry eyes is not a big deal and tells me to use more eye drops.

[littlemermaid]

littlemermaid, are you following this thread?

Yep. I'm not good on this - I'm supposed to be working on paediatric blepharokeratoconjunctivitis Maybe anti-anxiety meds and sleeping tablets might have affected the endo system too http://www.nhs.uk/conditions/Thyroid...roduction.aspx My friend has hypothyroid regulation meds now, as you say NADE, but before they took her seriously she was in a pretty bad way with anxiety and mood swings, and the dry hands and hair.

[wagnermid]

[QUOTE=lizlou29told me I was over-feeling things and need to not let this get to me.

There is no medical basis for saying you are over feeling things. If you have chronic or acute pain he can't treat he should be referring you to a pain specialist. I'd love you to swap lives with him for a day.

But seriously a multidisciplinary chronic pain team has made a difference to our sons life, helping him deal with the pain, medicating it but also confirming it is very real, very difficult to live with and that eye pain in particular is often ignored and under treated .

[wagnermid]

[QUOTE=lizlou29;87640]I was told to stop warm compresses and Doxy as otherwise I wouldn't know if it was helping.

Lizlou, just a thought from me professionally rather than a mum of a child with extreme eye issues, the problem with changing existing treatments when introducing something new is you don't know if changes in symptoms are due to stopping a previous treatment or starting a new. As a physiotherapist I wouldn't do the two things at once, I'd introduce a new treatment then once I had established what it was doing decrease the old treatment or the other way round but not both at the same time.

[Katewest]

Regarding % serum

I am kinda annoyed with Moran Eye Center in SLC. They are the only ones that do blood serum and only do 20% because "thats all they have the capacity to do" I really would like to try 100% does anyone know an eye center in maybe Cali that does them? The 20% serum drops left residue in my lashes and seemed to dry my eyes.