New Member: Severe dry eyes & Migraines... Need help and advice.

[MeganAlyse]

Hello. I am a 22 year old Interior Design student and artist new to this site. I feel like I am on a never ending quest for dry eye relief and as an artist my vision is more important to me than anything. My dry eyes have become debilitating and are severely affecting my studies. I am going through a course of study where we rely heavily on computers and are expected to use them for hours on end. This is a task that has begun to seem impossible but one that I am not willing to give up because of this condition, it is my dream and I refuse to give up. I need help and advice in a course of treatment whereas I am finally at the point where I feel that I have exhausted all options and gotten nowhere. This is my dry eye story; any advice or insight would be greatly appreciated.

Last September I was diagnosed with severe dry eye syndrome after a horrific GPC infection. The infection progressed to the point that my retinas shut down causing me to become legally blind for a little over 2 weeks. After that infection my eyes have never been the same. I was prescribed a steroid drop to clear up the infection and an antihistamine drop after that. It wasn’t until I started the antihistamine drop that I noticed the dry eye. I only took the drop for 2 days before I became worried about the dryness it was causing. At the time I was seeing an optometrist but when the course of treatment seemed to be causing other problems my GP recommended that I see an ophthalmologist instead. The ophthalmologist I started seeing ran the gamut of tests finding that I had blepharitis which was expected after such a severe GPC infection and finding a not so expected Schirmer’s test of 0 in one eye and 4 in the other. He immediately started a course of treatment for the dry eye including:

- Steroid drops daily – Lotemax (The only thing that seems to help)
- Restasis (Did not feel any effects)
- Punctal Plugs (Seemed to do absolutely nothing)
- Sjogren’s workup (ANA blood results were negative)
- Pilocarpine (prescribed by rheumatologist after Sjogren’s workup, didn’t
seem to help with eyes but my mouth feels a lot better and I don’t feel
dehydrated all the time)

I’m figuring Boston Scleral Lenses may be my next option but I’m not sure if dry eye alone makes you a candidate. They sound amazing and look like they may be able to help. Does anyone know what makes you a candidate for these lenses? Or has anyone been fitted for them strictly for dry eye?
I asked my ophthalmologist about them today but he had never heard of them. Fortunately I had printed off all the information from their site and made an info packet for him to go over. I must admit that it made me a little uncomfortable that he had never heard of something that was so easy to find on the confused confused dry eye websites online. But non the less, I’m sitting in limbo right now waiting for him to review the packet and was wondering if anyone had any experience with them.

So here I am now, almost a year later. I have been to countless appointments trying to sort this out and not only do I feel like I have no relief, I feel like the dryness is getting worse (I don’t even know how that’s possible considering one of my eyes tested at a zero). Not to mention I have been out of school for the summer and my computer use has been cut dramatically over the past couple of months. If I think its bad now how bad is it going to be when the fall semester starts back up?

Here is a list of my current symptoms, if anyone can provide insight I would greatly appreciate it.

- Severe burning (all of the time)
- Eyestrain
- Blurred vision (sometimes)
- Puffy red eyelids when I wake up in the morning (no mucus, swelling and redness usually go away within an hour of waking up)
- Migraines that obviously start in the back of my eyes and occur at least 2 times a week usually occurring later in the day (does anyone think this could be something neurological or something coming from the nerves in the back of my eyes?)
- Neck, back and muscle pain (I don’t know if these are relevant but they started shortly after the dry eye so it makes me wonder if they may be related)
My GP just put me on Gabapentin for this although it doesn’t seem to be doing much.

I apologize that this was so long winded, I thank you for reading through. I hope that by providing everything that someone will read this story and be able to make some kind of sense of it.

[Silverlady]

sero-negative Sjogrens

It is possible to have Sjogren's with negative bloodwork. I've been officially diagnosed by the great Mayo Clinic in Rochester, Minn. with seronegative Sjogren's. It's secondary to Rheumatoid Arthritis. I'm wondering if anyone has evaluated you for Rheumatoid Arthritis. Course you can be negative for that also. I am. I'd find a good rheumatologist and have him do an autoimmune workup. This usually includes xrays of the hands and feet and spine.

In the meantime, are you sitting in an awkward angle with air blowing in your face while you are working on the computer? Like I am now... The console computer I have sits in a corner of my living room. When the airconditioner blows, it hits the wall in front of me and bounces off into my eyes. I don't use this computer much in the Summer. I usually use a laptop.

Moving air is an absolute killer for my eyes. But I'm needing a new pair of Panoptyx and just can't afford the $500.00 my prescription costs. (Moving and the expenses are terrible!) Anyone want to adopt me?

Autoimmune diseases are really a bugger to pin down and it sometimes takes time. I sure hope you find an answer.

Billye

[Rebecca Petris]

Hi there and welcome. So sorry to hear your story!

Boston sclerals are always a possibility (yes, they can be indicated in some cases for dry eye alone) but it;s generally expected that you exhaust other treatment options first and I think there may be more out there for you.

A few thoughts...

- Have you had a full workup for meibomian gland disease and if so what were the results/treatment? (Clearly you've got aqueous deficient dry eye but many people who do also have MGD.)
- Anybody suggested autologous serum eyedrops?
- We have some high oncotic pressure eyedrops (Dwelle) which have given great relief to many people with severe dry eye. They are OTC so well worth a try. There is also a related drop called Freshkote which you can get on prescription.
- One simple step that can be taken which gives many people a certain amount of immediate relief... moisture chamber eyewear, such as Panoptx.

p.s. Some suggested reading.

[MeganAlyse]

Billeye,
Thank you for replying.
My RA factor was negative and the rheumatologist seemed fairly certain that my problems were not related to his field of study. He said that I could go in for the lip biopsy but that he didn’t recommend it since it was very painful and he didn’t think that it would show anything. Despite my dry mouth he said that he usually looked for gland involvement, which I was not showing physically. I trusted his opinion because his credentials were amazing. In fact at one point he was a Professor of Medicine at the Mayo Clinic and received their Distinguished Career Award, In addition he received the Master Award from the college of Rheumatology and his research on Sjogren’s can be found on the web in many published journals. The downside is that he did admit that he comes from the “old school” train of thought that if ANA is negative that you do not have Sjogren’s. Since I have been reading others post I am beginning to think that maybe he was just an elitist doctor stuck purely in his train of thought and just not used to seeing a 22 year old that is presenting so many problems. With that in mind I may decide to see another rheumatologist. I finally had a breakthrough tonight and found a dry eye specialist in my area after months of looking for an ophthalmologist that specialized. I will call for an appointment tomorrow morning and see how that works out. Hopefully if that ophthalmologist thinks that Sjogren’s is a possibility as the first one did he will have someone to refer me to.
All I know is that I am too young to be having all these problems. The dry eyes were bad enough, but my muscles to? I can't stand it.

[Rebecca Petris]

I finally had a breakthrough tonight and found a dry eye specialist in my area after months of looking for an ophthalmologist that specialized.

There are some good dry eye guys in - or at least near - your area. I highly recommend Richard Hector in Bradenton. He is a long-time favorite amongst the Bradenton/Sarasota Sjogrens syndrome support group, which is how I first came across him.

[MeganAlyse]

Dr. Hector was the doctor that I was referring to in my previous post.
I am so glad to have a conformation that this may not be a total waist of time.
You have no idea how excited it makes me that you recommend him and that he is accessible to me.
Yay!
Maybe help is finally on the way
I plan on making my appointment first thing in the morning when the office opens.
It's funny, I have looked many times on the Sjogren's sarasota website and for the life of me could not find their recommended opthalmologist. I found it so strange that they wouldn't have one listed since eyes have a serious envolvement. In fact Dr.Small (part of the Sjogren's sarasota group) was the original Rheumotologist that I was referred to (he is supposed to be the best here) but it was near impossible to schedule an appointment with him with out it being 3 months out and needing to be scheduled yet another 3 months out when they would cancel on me. I waited 8 months for an appointment and finally scheduled with someone else.
Are you familar with Dr. Small or do you know any patients that have seen him? if so would you recommend me going back on his wait list for an appointment?

Thank you so so much for the recommendation

[ss500]

Feeling your pain

Hi MeganAlyse,
I can relate to the debiitation your dry eyes have caused.
I'm an artistic person as well and not being able to see clearly and comfortably is terribly upsetting/depressing.
In additon to all of the wonderful suggestions here, you might try some nutritional therpay as in EFA /Omega three supplements. They have made my days almost normal again-its a miracle. I still have trouble in the morning but just a few weeks on supplements and I was able to completley stop using ALL drops and gels. The burning is COMPLETELY gone as are the headaches. That in itself is life changing. My vision is clear again, if not sharper than before-weird. Again, I am not back to complete normalcy because of the morning issues but the daytime when you are using your eys the most is pain free, not dry and feel ''normal'' where youre not constantly aware of your eyes and the discomfort.

[MeganAlyse]

I have tried various omega supplements but find them very hard to digest. Even the oils that are not in pill form. Have you had any problems with this or do you know of any of these supplements that are easy on the digestive tract?
My doctor keeps telling me to take them but when I tell him that they are harsh on my digestive tract he seems to not have any advise. I have given up on the vitamins because they are expensive and it seems that every one that I try I just end up throwing out. Some of the ones I've tried have cost as much as $60 a bottle and when you have health insurance that is far more than a prescription and does not seem to be a very cost effective treatment.

On a positive note.
I got an appointment with Dr. Hector, whom Rebecca said was very popular in my area. My appointment is first thing Monday morning. So I'm excited about that (well not to have my eyes probed at again but you know what i'm saying). I also have a lip biopsy scheduled for Monday as well, that will rule in or rule out a sjogren's diagnosis and weather I have it or not, it will just be good to know as it seems that no one has any other explanation for my extremely low schirmer's test.

Thank you for the advise and it's nice to have a fellow artist to sympathize how important eyes are in this field.

[Silverlady]

Good luck to you

I'm a jewelry artist so I do indeed know what you are experiencing. I had a special order yesterday and I struggled all day to accomplish it simply due to the dry eyes. It takes the artistry away and you just want to get it finished! That isn't the way I work so my sympathy to your situation is real. I sincerely hope they accomplish something positive in your testing.

Billye

[ss500]

The have not bothered me in that sense. I take them with food, it helps avoid stomach upset.
I really think you should try a bottle of Fortifeye or Bio Tears. They both seem to work for me, I started with Fortifeye and saw results in a week. I was curious about Bio Tears (they have a few additonal things in them I felt would be good for my situation) and began those, they seem to be working well too. I take a mix of both right now-trying to decide which ones i like better.
I KNOW its the supplements helping me. I am not using anything else.
NOTHING else was working for me except a steroid drop early on but I did not want to use that for more than one week because its bad for your eye health long term.
Those supplements are not expensive -a months supply is 25-35 dollars. To me that is not much compared to what all the other stuff costs-and all of that is now eliminated on the vitamins.
My dry eye began about three months ago after a viral infecton. I do not have any auto immune issue(tested for all) no lasik surgery and not a contact lens wearer. I just woke up one day and they were dried out beyond belief.
Burning, a terrible headache behind each eye, red, and very light sensitive. This went on for two months and seemd to be worsening day by day . I really was worried about how I could go on the rest of my life without my eyes working right. I was in a deep depression because of it. No doctor could help me either-amazing how many terrible eye docs there are. Finally, an excellent cornea doctor i saw suggested the fish oil supplements.
ALL of those symtoms are compeltey gone now-the only thing I have now is morning dryness which is bothersome but MUCH more tolerable than all day discomfort and vision impairment.
Thank goodness I was open enough to try them-never expecting such a turn around in my symptoms. I am very thankful. I hope you try them again-they are good for your body all around.

[Caroline]

Migranes

Hi

I've tested as having o in both my eyes with schmir test. I'm now 2mm with plugs in.

I know what you mean about migrane starting in the eye. Well for me it starts with a dry right irritated eye, the pain then starts in the back of the eye, takes over one side of my head a travels to my neck, which get really stiff. Usually this sort of pain is from muscle tightness. I know when my right eyes gets dry there is a really sensitive patch just above my iris (i;ve had LASIK and this is above the bit that didin't get cut so maybe nerve there has become more sensitive or something). I know this because i can touch the white bit above my left eye and no problem but above my right it feels really sensitive and with a dry eyelid rubbing it i think it triggers nerve irritation which then goes to the back of the eye somehow. This probably then causes the muscles around my eyes to tense up (like back muscles tense up to protect the spine) and the tension travels to my neck.

I am experimenting with diet, its worse day after having any alcohol or cheese or chocolate. Staying hydrated is important and i am doing eye exercises to try and cope with the eye strain. It helps to try and stay as relaxed as possible. I know people who do Aikido or yoga and that helps them stay relaxed and avoids migranes. I do think we are possibly more prone to migranes though from having dry eye and using the computer as i have been having increasing number of migranes now that the summer and warm weather is here!

I hope you find a way to cope with the migranes. I had one this morning and took 3 nurophen and drank lots of water as well as putting lots of drops in my right eye. It did the trick luckily!

Caroline

[skygoddess]

I have suffered from chronic migraines for years, but I have gotten amazing relief with Maxalt (MLT) They are a God send. I only wish my eyes were as easy to treat.

[MeganAlyse]

I actually finally think that I found a cure for the migraines. My GP came to a dead end while trying to figure out what was causing my back, muscle and joint pain. All blood test were negative so lucky me, nothing spoke for the cause. He decided to prescribe gabapentin and chiropractic care and see if it took. Amazingly enough it did and not only for the muscle pain. In fact it has had more of an impact on curing my migraines than anything. The best part is, I take this medicine daily so i don't have to wait for an attack and then a medicine to relieve it, they just don't happen anymore. My quality of life has been much improved since I have been on this medication. It has truly been a godsend.

[kimby2007]

Sjogrens

As others have mentioned you don't have to test positive for Sjogrens to mean you have it. I am seronegative but have severe Sjogrens. I did have a positive ANA at one pt though but that has returned to normal despite the persistence of my symptoms. If you have symptoms push to get the care u need and don't let any MD brush you off.

Kim