Allergy, Dry eye, both? possible Neuralgia?

[DryGuySmb2]

I recently have been stricken with the dry eye curse as I experienced Photokeratitis during the recent eclipse. I know I'm an idiot. But something has been off ever since. I have been in tremendous pain ever since and have been having many problems.

I was prescribed Maxitrol for the Photokeratitis and everything started to get much worse. I took it for quite a while not attributing the problem to the drops I was using. I discontinued and went to an Opthalmologist and he said I had dry eyes. I started the fish oil, tears, compresses and nothing seemed to help. I got worse and this time I had itching and increased burning, needle in the eye sensations. it extended into my nose and above and below my eye. I decided to take a Zyrtec which seemed to relieve a lot of the extreme pain. Now I can't seem to not be able to stop Zyrtec without the extreme burning sensation.

I am in a constant state of pain and discomfort with my eyes, They constantly feel dry even when I see a clear, thick, tear film on them. I have prominent veins that have not gone away since the exposure.

I can't sleep at night because the pain is so intense. I am starting to become wary that I have developed Corneal Neuralgia, due to having an autoimmune arthritis condition. I have read multiple studies by Dr. Rosenthal explaining that people with these diseases are more susceptible and that UV exposure can be a trigger.

Nothing seems to be helping the pain, and the doctor doesn't care about the fact that my eyes feel much better, not 100%, while on Zyrtec.....Which dries my eyes out and causes sleep problems.

I am currently on:
•Fish oil 2x daily
•Restasis 2x daily
•Just started Lotemax today 4x daily
•Restarting hot compresses

The last time I was at the Doctor My TBUT was at 1 second and I had light scratching on my Right eye and Worse scratching on my left eye. This was when I was off of Zyrtec.

I am having an extremely hard time with my Doctor as he hands every phone call over to his technicians and does not have anything to do with these talks. I have very limited options where I live as far as Opthalmologist go, the only other clinic I saw an Optometrist at who was one of the worst doctors I have ever met, so I have no hope for any of the MDs there.

My day to day life has been extremely effected by this as my Job requires me to be outside a lot, which is hell on my eyes. I am afraid to say that I have been starting to think of suicide. I was already in incredible pain before this and this has started to tip me over the edge. My support system is very lacking as I don't want to burden my mom and my dad has never understood. Everyone else has no sympathy since I did this to myself. My Psychologist doesn't seem to be the best either, I started seeing him once all this started.

There is a dry eye center 2 1/2 hours from where I live that seems promising, they have more tests and more treatment options than Restasis and Steroids....including Amniotic and autologous drop treatment, they are younger doctors who may have more insight if it is Nervous system pain.

Sorry this turned into one of "those posts", if anyone has any reccomendations I welcome them with open arms...or eyes.

[farmgirl]

Wow Guy, I am so, so, so sorry that this happened to you. Of course Photokeratitis is not one of my problems, nor is it very common on this forum so I can't speak to that...but...what I can speak to is how you got suddenly worse after using the medications prescribed to you. Damaged eyes are EXTREMELY sensitive and mine are no exception. I am guessing here that what you are reacting to is the preservatives in the medications prescribed by well meaning doctors. I am so intolerant of almost everything that I have connected a few dots over time....let me share.

1) If it is making you worse, quit immediately.....remember less is better.
2) NEVER and I mean NEVER use any medication preserved with BAK, in fact it can do more damage than the UV exposure.
3) If you need an antibiotic use Vigamox by Alcon
4) if you need a steroid use Minims by Bausch + Lomb
5) If you need a moisturizing drop use the preservative free type in the individual dispensing vials.
6) If you need restatsis, ditto use the individual dispensing vials
7) Use every drop in these vials, don't waste medication, I will use anything less than a week old that has been recapped and have never had in issue.
8) Invest in some good moisture chamber UV blocking dark glasses and don't go outside without them for any length of time, if possible try them on first before you commit as fit is critical.My favorites are 7 Eye or Wiley X.
9) OIls are good but fish oil is not the best supplement. I prefer (of course the more expensive) YES Parent oils available on Amazon. They will work much better and will not be rancid.

I am happy to note that you are going to a specialist as that is where you need to be, and please, please remember that you will improve. I understand that you did this to yourself but, it is what it is, and please don't beat yourself up over it. Understand that it is difficult for people who have never experienced eye pain to comprehend what you are going through but the best analogy I have found is to compare it to getting soap in your eyes, except that you never get it washed out, that is a feeling that everyone can relate to.

Hang in there Guy and make sure you get into that Dry Eye Center ASAP. Keep in touch....cheers....F/G

[DryGuySmb2]

Farmgirl,

Thank you for your kind words and reply, it means a lot to me!

I have been highly suspicious of BAK, but unfortunately am going to be using the Lotemax with BAK in it as I am almost out of options with my Opthalmologist and the pain is driving me crazy. So far only 2 drops in each eye have made me feel somewhat better, fingers crossed it's not a placebo. I will however monitor how it makes me feel, if it makes me feel anything like the Maxitrol did, I'm done with it. The Pharmacist is starting to think it was the Neomycin in the maxitrol that caused the allergy as this is very common. I am still however very skeptical of BAK.

Thank you for the options on the alternatives, they are definitely worth talking to my doctor about and seeing what he thinks. BAK is entirely too scary as a preservative and why the FDA decided that it is a good thing to put in the eye is beyond me.

I am very curious about moisture chamber goggles, but have a very high prescription and am wondering if any of these glasses are accommodating? If not I was honestly thinking of just wearing my glasses over onion goggles...Boy will I be a hit with the ladies. Or at least I can do this at work. I only need to get to my car to the delivery and back in shop.

As far as the symptoms go, you are right I need to remember that I will improve, it has only been two months, but it's felt like a lifetime... These things take time and I need to realize that. As the saying goes "This too shall pass"

I'm uncertain as to whether or not the dry eye center are specialists, but they have way better tests than checking Lids and scoring TBUT. I have already met my deductible and they are in the network, time is running out so I need to get into them pronto.

I will keep plugging along, I have had a day off of work and if it comes to it I'll lower my hours somewhat.

Once again Thank you so much for the response it means a lot!

[farmgirl]

Hi Guy: If I were you, and I am not, I would stop the lotemax immediately, unless it is the gel which is non preserved and switch to the Minims. Honestly the BAK is killer and can permanently damage your eyes. Personally I would not fool around with it under any circumstances, you have too much to lose. The Minims have to be ordered in usually and it can take a day but your Dr. can prescribe it.

As regards the glasses the prescription can be a problem especially if there is a lot of curvature in the glasses. The Wiley X are better (flatter) and I bought mine online. I found a place (look under safety glasses) who sent me samples of the frames with a refundable deposit so that I could chose and they will be able to tell you which ones they can fit with your prescription and will only send you those ones. You do have to specify a gasket for dry eye though as the safety gaskets are too thin.

[MGD1701]

Hi Guy

Dry eye center: If I were you, I would visit there as they should have more knowledge/tools to identify causes.

There are many successful stories in the forum, maybe you could learn something from there.
You can also get it under control, like many others, including myself, and a real expert makes a big difference + we need to keep learning as well.

Good luck!

[farmgirl]

Just curious Guy, where are you located?

[farmgirl]

Here is a brief summary of the dangers of BAK, there is a lot more online that is very scary. I have bolded and underlined the part that I believe might pertain to you and IF it does.....DO NOT USE THIS PRESERVATIVE EVER! Be aware that the steroid in Lotomax could mask the negative effects of the BAK.

This is like playing with fire which is not necessary because they do make a preservative free version which I have mentioned.


Preservatives in eyedrops: the good, the bad and the ugly.


Baudouin C¹, Labbé A, Liang H, Pauly A, Brignole-Baudouin F.
Author information



Abstract

There is a large body of evidence from experimental and clinical studies showing that the long-term use of topical drugs may induce ocular surface changes, causing ocular discomfort, tear film instability, conjunctival inflammation, subconjunctival fibrosis, epithelial apoptosis, corneal surface impairment, and the potential risk of failure for further glaucoma surgery. Subclinical inflammation has also been described in patients receiving antiglaucoma treatments for long periods of time. However, the mechanisms involved, i.e., allergic, toxic, or inflammatory, as well as the respective roles of the active compound and the preservative in inducing the toxic and/or proinflammatory effects of ophthalmic solutions, is still being debated. The most frequently used preservative, benzalkonium chloride (BAK), has consistently demonstrated its toxic effects in laboratory, experimental, and clinical studies. As a quaternary ammonium, this compound has been shown to cause tear film instability, loss of goblet cells, conjunctival squamous metaplasia and apoptosis, disruption of the corneal epithelium barrier, and damage to deeper ocular tissues. The mechanisms causing these effects have not been fully elucidated, although the involvement of immunoinflammatory reactions with the release of proinflammatory cytokines, apoptosis, oxidative stress, as well as direct interactions with the lipid components of the tear film and cell membranes have been well established. Preservative-induced adverse effects are therefore far from being restricted to only allergic reactions, and side effects are often very difficult to identify because they mostly occur in a delayed or poorly specific manner. Care should therefore be taken to avoid the long-term use of preservatives, otherwise a less toxic alternative to BAK should be developed, as this weakly allergenic but highly toxic compound exerts dose- and time-dependent effects. On the basis of all these experimental and clinical reports, it would be advisable to use benzalkonium-free solutions whenever possible, especially in patients with the greatest exposure to high doses or prolonged treatments, in those suffering from preexisting or concomitant ocular surface diseases, and those experiencing side effects related to the ocular surface. Indeed, mild symptoms should not be underestimated, neglected, or denied, because they may very well be the apparent manifestations of more severe, potentially threatening subclinical reactions that may LATER cause major concerns. ....(and note he uses the word LATER even if it seems OK at the moment.)

[Hokucat]

Great warnings on BAK by farmgirl.

I already had severe dry eyes when I started using Lotemax. As if things were not bad enough for me already, after using Lotemax for a few months, I started developing blepharispasms (involuntary shutting/blinking of the eyes). I could not look up at anyone or anything for more than a few seconds without my eyes constantly shutting.

None of my eye doctors associated the bleparosoasms with using Lotemax, and just chocked it up to my dryness continuing to get worse. After my eyes started getting better from probing and diet changes, although the blepharospasms lessened, it continued until a month after I stopped Lotemax. So I do feel the BAK in the Lotemax was continuing to cause damage to the surface of my eyes. I feel fortunate I stopped it before it caused permanent damage, and have to thank this forum for making me so aware of the dangers of BAK.

I take an rx drop for a retina condition I have, and was able to get my doctor to prescribe a preservative-free alternative to the original drop that contained BAK. PF is always more expensive, but it's worth it.

[farmgirl]

If you are still checking this thread Guy I'd like to know where you live as something has come to my mind....F/G

[DryGuySmb2]

Hey sorry I'm still here, I'm just torn on the Lotemax, as it seems to be helping and it's difficult to ask my doctor anything over the Phone as he hands everything over to his technicians. I've read all the literature on BAK and I definitely know how bad it is. I just know that the Lotemax has also helped A lot of people as well.

I also don't want to be viewed as Non compliant, I know that that can really screw up a doctor patient relationship.

I live in Missoula, Montana.

[farmgirl]

Hi Guy: Sorry, he has to respond to your concerns. The technician needs to give him the message that you are not comfortable with preservatives and can he prescribe the Bausch and Lomb Minims, if he doesn't get back to you within a day he is being negligent. Of course the Lotomax helps, it is a steroid but usually it is a temporary fix during the time you are using it. It is designed to calm down the inflammation but it can only safely be used for short periods of time and then often (as in my case) when you go off it the inflammation returns if the underling disease still exists. It is not usually a cure it is an adjunct therapy. Long term use can lead to cataracts and glaucoma....who needs that?

You don't have to comply with any suggestions made here on the forum so don't worry about that, we are not doctors, just patients with a lot of experience. I am just trying to warn you that BAK can further damage your already damaged eyes, to me it is not worth the risk but that is just me, because I know what it does to personally and having researched it feel it is not worth the risk....I'm just saying. Here is a quote from another study:

Studies both in vitro and in vivo have widely demonstrated that exposure to preservatives (even at low doses) results in histological, inflammatory and toxic changes at the surface of the eye. Therefore, on the basis of all these experimental and clinical reports, it is advisable to use BAK-free solutions whenever these are available on the market.

The reason I ask where you live is I am wondering if you had a lot of smoke from the BC or California forest fires in your area in the few months?

[DryGuySmb2]

It was smoke from all the fire in Montana. Missoula was surrounded by around 5 different fires, plus one that was right outside city limits. The air quality was unhealthy for almost the whole summer.

[farmgirl]

Ah ha, just as I suspected. This summer I became painfully aware of the problems that forest fire smoke presents for sufferers of dry eye. My husband and I went on a 3 day old car tour in southern Alberta. At the time there were a lot of forest fires burning in BC but none real close to where we were. There was some smoke in the air but not really bad. At the end of day one my eyes were sore, quite sore even though I wear my moisture chamber glasses always when outside. In the morning they felt much better so I took off in the car but by the time I hit coffee break I knew that I couldn't go any further so opted to drive the trouble truck which would put me inside with air conditioning and no wind in my face. By the end of that day my eyes were so sore and red and burning and NOTHING would relieve it that I told my husband that we had to go home I wanted to see a Dr because I thought they were getting infected. He agreed that possibly something was brewing even though I had no discharge and I started on an antibiotic and steroids but miraculously they got better by the next day.

I then started to analyze what had happened that was different and what could have triggered it. The only thing different from other tours was the smoke haze so I researched and this is what I found.

Exposure to smoke on any level can cause irritation to your eyes—symptoms such as burning sensations, redness, and tearing up are commonplace with exposure to smoke. Robert N. Weinreb MD, a distinguished Professor of Ophthalmology at the University of California San Diego, claims that “even a healthy person’s eyes can be bothered” when it comes to smoke exposure and, particularly in the case of those with dry eye syndrome, “exacerbate symptoms.”

What causes this irritation is the existence of small particles, which are two and one half microns or less in size (for reference: 25,400 microns = 1 inch), within the smoke that get stuck in your eyes. These particles are too small to be seen with the naked eye. These particles can remain floating in the air long after the smoke has cleared, so if you are around fire or a place where large amounts of fire have been recently, many firefighters recommend the use of protective eyewear.

As it turns out, when the tear film is compromised the particles stick to the dry eyeball eye and with inadequate tears to wash them off they burn just like if you get a good dose of campfire smoke. It makes me wonder if this didn't account for a lot of your problems earlier, especially since you work outside a lot. Add that on top of your photokeratitis and then the BAK in all the drops prescribed....DYNAMITE!!!....F/G

[Hokucat]

Guy, wanted to mention after going off the Lotemax and having my blepharospasms go away, for my retina issue I did have to take an rx drop with BAK for few months, until I was able to get the alternative preservative-free drops. I was so afraid the blepharospasms would start up again and get permanent damage to my eye from the BAK.

My eye doctor agreed rinsing with preservative-free saline like Purilens Plus 20-30 minutes each time after using the BAK drop could help limit the negative effects, while still getting the benefit of the medicine in the drop. I did that religiously for the two months I had to use the BAK drop, and luckily the blepharospasms did not come back, and the surface of my eyes did not get further compromised. I'm not saying this is a long term solution, but at least something you may want to try to negate some of the BAK in the meantime. This forum's Dry Eye Shop has several different PF salines and sizes:

https://www.dryeyeshop.com/mobile/pr...ines-c162.aspx

But ultimately, move to alternative preservative-free drops soon. There's been times I've e-mailed or faxed a brief note to the front office, addressed to the doctor, when I had questions or concerns for a busy doctor. Each time this worked well in getting a response back within a reasonable time. Perhaps try that with your doctors office.

[DryGuySmb2]

Farm girl:
I had a feeling the smoke was definitely a big contributor, I really did a number to my eyes and I feel like they haven't had a good chance to have any healing happen due to the allergy problem. I am wondering if seeing papillae (bumps) on the episode eye Lids is normal even if you're on an allergy medication?

Hokucat:
Thanks for the recommendations, I have been putting in a drop or two of refresh artificial tears after the Lotemax to try and wash some of it out, but the saline rinse is a much better idea. Also thanks for the reccomendation on how to deal with the doctor. I and many others around me have been finding him not responding to patients over the Phone a bit negligent. I've never had this happen before with a doctor, no matter how busy they are.

I'm wondering if either of you would be interested in seeing the Dry eye doctors I am considering seeing Dry eye section of their web site and whether or not they look like they could help me. I'm afraid to drive 3 hours just to have them not be helpful.