Corneal neuralgia/dry eyes - from sucidal to almost normal

[farmgirl]

And I agree with lelagy that the serum could supply nutrients not only to heal the cornea but also to help regenerate some nerves. If dryness is a severe problem I agree with lelagy as well that plugs may be helpful...cheers..F/G

[lelagy]

Hi again! I also wanted to say that I think serum contains som anti-inflammatory compounds, and that might be good for corneal neuralgia since I think there is an inflammtion aspect of the condition. Just my theory though. But yesterday I had confocal microscopy done and they could see normal looking nerves but to many inflammatory cells in the cornea.

[sunshinelover]

Hello Lelagy, I sent you a private message. Have you seen it
?
So interesting to hear about the confocal. Does that mean lasik has nothing to do about it?

[lelagy]

Hello Lelagy, I sent you a private message. Have you seen it
?
So interesting to hear about the confocal. Does that mean lasik has nothing to do about it?

I'm sure Lasik has something to do with it anyway - never had any symptoms from dry eye except that I had trouble wearing contacts.

I tried to email you sunshinelover - will answer your message here instead.

[Jenn1]

Do serum drops help mgd and bleph and if so how?

[waterbee]

I know this is old but i really needed to read some thing like this. Thank you.
( by the way, would love an update)

[Daniel2]

I experience burning with the serum eye drops too. OP can you elaborate on to why is it? You said that it's due to about nerve regeneration.(?)

[Neerav1989]

Hello guys.
I know this is a very old thread. But would love to know how all of you are doing. I am currently suffering from Post Lasik Corneal neuralgia for 26 months now. I have disabling dryness sensations/pain almost all day. I just wanted someone to answer these questions;

1) Is it fine to put 100% serum tears in eyes ? Does anyone believe 100% serum can harm eyes in anyway ? I haven't felt any side effects in 2 months. But there are many doctors in India who says they won't recommend more than 40% serum at all.

2) How many times do you guys feel 100% serum needs to be put ? I am currently putting it 4 times a day.

[lelagy]

Hello all! Just wanted to post an update since I've made some changes to my "regimen" and again feel great (I would say I have steadily improved for the last years if I look at the picture, though there have been some ups and downs. I no longer do any of the above (after a while my eyes wouldn't tolerate the eggs anymore for example). Instead I do the following:

1. I have used a few rounds of Regenereyes: http://mydryeyes.org/

This is a blood product which means some risks, and also very expensive, but it has worked very well for me. I have post lasik dry eye (due to insufficient/dysfunctional innervation I think), but my friend with MGD didn't notice any improvement (though I have heard of people with MGD who has benefitted)

2. I use a device called Vielight. www.vielight.com
This is low level light therapy and I shine it directly into the eye. I guess this sounds VERY scary to post-laser surgery dry eye sufferers, but this is different. I have been in contact with the manufacturer and developer and they say it's ok. If you feel hesitant please contact the provider and ask for yourself. I shine it directly into each eye for like 10 minutes once a day. I have the device called Vielight Neuro, it's like 1400 dollar so quite expensive, but it also comes with a headset that you can treat the default mode network of the brain. If you want a cheaper option you can buy this (same wavelength): http://vielight.com/product/vielight-810/
It's without the headset. I chose the 810 model because it's supposed to better target nerve cells. If I was suffering from non nerve damage related dry eye with inflammation I would go with the http://vielight.com/product/vielight-633/
DO NOT ORDER THE 655 AND SHINE INTO THE EYE - IT'S A LASER AND WOULD BE DANGEROUS
The Vielight support is very helpful if you have questions.

3. Infra Slow Fluctuations Neurofeedback - this has not helped me personally with the pain, but it has helped me treat the symptoms of traumatization and psychological/physiological dysregulation it has caused. ISF is more powerful than regular neurofeedback. It's not very common but there are some providers in the US. Maybe you can contact ISNR, the professional neurofeedback organization, to find out, or it might be listed on their webpage: http://www.isnr.org/
Theoretically, if your problems are caused by HPA axis dysregulation/hormone dysregulation/"adrenal fatigue", ISF neurofeedback might be helpful for the dryness as well.

4. Good diet, stress regulation, rest etc, and creating meaning. During periods I have found these things almost "provocative" to think about - like "yoga does nothing for my pain", and, with using yoga as an example, it's horrible to go into the body if what can be found there is unbearable pain. But maybe, if you are lucky to have slightly better periods, I find these things an indispensable part of any life, with or without pain. I highly recommend movement based practices like Katy Bowman’s work:
https://nutritiousmovement.com/
And especially Jill Miller’s Roll Model Method (she has a great book that can be used at home, called The Roll Model: https://www.amazon.com/Roll-Model-St...ler+roll+model
Please notice that I understand that there is no “stress relief” to find when the body is horrible place to be. Sometimes I have found it much more helpful to go to a high intensity class and blast away my anxiety and frustration. But this condition has also resulted in fatigue for me, so I had to start making new choices around my training/movement.
I follow (I do make exceptions sometimes) a paleo diet. Good resources for this is Chris Kresser, he has a great podcast also if you have difficulty reading: https://chriskresser.com/
I also love The Paleo for Women podcast (relevant for everyone):
http://paleoforwomen.com/

What I mean by “creating meaning” is something I decided for myself a while ago when I had a worse period – I cannot count on my life being pleasant, but I least I want it to be meaningful and interesting. So (since I don’t have children etc) and therefore time in the evenings etc, I registered for a lot of courses, like theatre, singing etc. Again, I fully understand this is not what you would want to do when you are in a lot of pain, when I was at my worst I just wanted to stay at home – even if I couldn’t escape the pain there either it was the least stressful thing to do. I FULLY understand that. But be prepared to take action if better times come – especially as in my case, you have forsaken/missed out on so many things for such a long time.

Lastly – find someone who can see you in, and affirm what you are going through, preferably a very skilled therapist. My personal preference is body-based therapies like Somatic Experiencing or Sensorimotor Therapy. You need validation since the people around you won’t understand what you’re going through and it’s so important to be seen in one’s experience. At least see and validate yourself – even if no one understands what you’re going through, at least you do.
Lastly – I almost never check into this page and have very limited ability to answer questions, partly because it reactivates my own trauma with this so much. So this is the reason if I don’t answer, but I think I have provided enough information above if you would like to take action.

Strength and love to you all,

Maja

[waterbee]

Thankyou for updating us. I remember when you first posted, yours and few other posts really stood out to me as I related heavy. occasionally when I log onto the forum I wonder how you are so I'm glad your doing better.

[Neerav1989]

Hi Lelagy,

Thanks for writing. So good to know that you are doing well. It also gives hope to patients like me who feel suicidal because of neuralgia.

Meanwhile that is some really good information that you gave but unfortunately I can't try all of it as I leave in India.

I am so happy that you mentioned that when you are at your worst, you just want to stay at home. Because that is exactly what I feel every single day and others don't understand that.

Can you please answer below questions regarding Autologous Serum eye drops.

1) Is it fine to put 100% serum tears in eyes ? Do you believe 100% serum can harm eyes in anyway ? I haven't felt any side effects in 2 months. But there are many doctors in India who says they won't recommend more than 40% serum at all.

2) How many times do you feel 100% serum needs to be put ? I am currently putting it 4 times a day.

3) were you using 100% serum or 20% or 50% ? How long did u use it and how many times during a day ?

4)Did u mix serum with saline or any other eye drop containing preservatives ?

I also agree with you that you don't check this website and don't answer questions as it reminds you of your worst days. But there are people out there like me who are feeling suicidal and they desperately need your help/suggestions. So I hope you will keep checking this page and continue helping others.

Thanks !!

[farmgirl]

I know that SAAG has used 100% serum drops with no side effects. I have used 50% twice a day for 4 years and that has been enough to keep my corneas healthy.

[pythonidler]

Neerav,

If you've been using 100% serum tears 4x a day for a few months, and haven't noticed a whole lot of improvement, then you might want to consider using a lower concentration more times per day. For example, my doctor told me to use 20% serum 8x a day. In reality, I probably use it about 12-14x a day.

[Neerav1989]

Pythonidler,

I have been using 100% serum for a little over 2 months now. Some days it does make me feel a little better. On many other days it does not give any relief. But no improvement for sure and no side effect either. I did try 20% serum and 80% CMC but it only caused more dryness. I should may be try 20% serum and 80% Saline. Will discuss the same with my doctor as well. Thanks for the suggestion.

Farmgirl,

Could you please tell me for how long SAAG used 100% serum without any side effects ? Thanks in advance

[farmgirl]

I couldn't tell you but I know from her posts that she has. Hopefully she will see this thread and respond. She is not on the forum much anymore but does post from time to time.