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I have become extremely organized. Today I am seeing Dr. Toyos with all your questions as well. Here is also what I bring. Maybe it can be an example for others so that maybe we can all be taken as seriously as possible....
Hope this helps- sorry it is so long:
Dear Doctor XXX:
I have been suffering with severe dry eye for over three years. My main symptoms are continual severe burning, severe photosensitivity, and sometimes a “heavy” eye lid feeling. The most consistent diagnosis I have been given is Meiombian Gland Dysfunction, poor tear film, and possibly slight aqueous deficiency.
The eye pain affects all areas of my life especially work and social. I leave work four hours early on most days and spend most of my free time in bed with an eye mask on. I am desperately seeking some type of relief and for this reason I have seen (in the last 3 years) 9 ophthalmologists (including corneal specialists and one occuplastic surgeon), one dry eye specialist (optometrist), numerous doctors as well as alternative therapy specialists.
In this time I have tried:
1. punctual plugs- upper and lower- helped when I first started having eye pain but seemed to lose effectiveness. A month ago I had 60-90 day plugs put in my upper punctas. The right has fallen out, the left may still be in- I am noticing no relief however.
2. Most preservative free lubricant drops (I find no relief with lubricating drops)
3. Steroid drops- sometimes help, sometimes irritate my eyes
4. Azasite- 30 days- I am not sure if this helped
5. Lacriserts
6. Restasis (3 separate times for over 4 months each time, no relief)
7. Doxycycline 100mg
8. Supplements (omega 3’s), NAC, ALA
9. Washes (Steralid) and warm compresses (morning/night)
10. humidifiers
11. special goggles, sunglasses, etc.
12. Scleral lenses made by a local doctor which did not fit well and the vision was never accurate- I never wore these after I bought them and took them home.
13. Pataday
14. Pain medications- ibuprophen, aleve, aspirin, Vicoten (in various strengths), and Norco- no relief from pain medications
15. Acupuncture- no relief
16. Testosterone cream- didn’t seem to help
17. Bacatracin and Eurothremiacin ointment
18. Neurontin- 300 mg 3x a day
19. Homeopathic treatments- eye bright wash
20. Special diet- no wheat, no eggs, no dairy
21. Freshkote prescription drop
22. Nevonac eye drop
23. “Bandage” contact lenses
List of Eye Doctors I have seen:
• Dr. Katerina Kurteeva, MD- 361 Hospital Road Suite 327, Newport Beach, Ca 92663. Phone- (949) 642-3100
• Dr. David Wirta, MD- 1501 Superior Ave Suite 303, Newport Beach, Ca. 92663. Phone- (949) 650-1863. Fax (949) 650-4359.
• Dr. John Hovanesian, Corneal Specialist, MD, Harvard Eye Clinic- 24401 Calle de la Louisa Suite 300-312, Laguna Hills, Ca 92653. Phone- (949) 951-2020. Fax (949) 951-9244.
• Dr. Jeffrey Jacobs- Harvard Eye Clinic- Information same as Dr. John Hovanesian.
• Dr. Stuart Brown, MD- Chairman and Professor and Director of the Shiley Eye Center at UCSD, 9415 Campus Point Dr., La Jolla, Ca. 92093. Phone- (858) 534-6290.
• Dr. Dan Carver, OD Dry Eye Specialist, 11180 Warner Ave Suite 261, Fountain Valley, Ca. 92708. Phone- (714) 263-0800. Fax- (714) 263-2336.
• Dr. Alyssa Wald, MD, 2706 Harbor Suite B and C, Costa Mesa, Ca 92626. Phone- (714) 545-9162. Fax- (714-241-1345.
• Dr. Carl Garbus, OD fits for scleral lenses, 28089 Smyth Dr, Valencia, Ca. 91355. Phone (661) 775-1860. Fax (661) 775-1860.
• Dr. Farnaz Memarzadeh, MD Corneal Specialist for Doheney Eye Institute at University of Southern California- LA office- 1450 San Pablo Street, Los Angeles, Ca 90033- phone (323) 442-7100. Orange office- 2617 E. Chapman Ave Suite 301, Orange, Ca 90033.
In this time I also stopped all prescription medications that I was on to see if that had an effect on my eyes. I was off all medication (except ambien) for over 6 months and didn’t notice a change in my eyes. But, due to the anxiety/distress/depression of the eye pain I resumed the following medications two weeks ago: Zoloft 150mg, Xanax (as needed) and 100 mg of doxycycline.
For my eyes I currently do the following:
1. Doxycycline 100mg per day
2. FreshKote (started this a week ago)
3. BioTears supplements and anti-inflamatory supplement two times a day
4. Warm steam for 10-15 minutes morning/night, gland expression, Steralid wash twice a day
5. Humidifier in bedroom, eye mask at night
6. Sunglasses most of the day- even in the office at work
Also, my current dry eye optometrist treated me for possible demodex with tea tree oil. There was no progress from this.
I was been diagnosed with conjuncitvochalasis and had it removed from my left eye on January 28, 2009. The doctor was not sure the conjunctivochalasis was the source of my pain. I am still waiting to see if the surgery helped but as of now it hasn’t. I would like an opinion as to how this surgery is healing, as the area is still visible.
In the past I have been diagnosed with blepharitis and MGD. I have done everything available to get this “under control” (warm compresses, scrubs, antibiotics, etc). I have been told that the blepharitis is under control but that I have a recent TBUT of between 7-10. I would like to know if this is an accurate diagnosis and if so, then why nothing has helped?
One dermatologist diagnosed me with Rosacea (mild) could Ocular Rosacea be part of the problem? If so, then why doesn’t the Doxycycline relieve the symptoms? What else can I do?
Perhaps there is some underlying condition that the doctors are missing? Maybe something with my optic nerve? Do I need to see a neurologist or doctor of internal medicine? Also, I have had “basic” autoimmune tests run such as ANA and Sed Rate, which came back “normal”. Do I need other autoimmune tests run? In the past I was on a low dose of Synthroid but was taken off because without the medication my levels were within the “normal” range. My last TSH run about 6 months ago was “normal”. Just before my eye problems began I was taken off of Metformin. Previously I was considered “pre diabetic” but my blood sugar has been “normal” in routine tests since 2005.
I have also been told that allergies are not part of my problem but I want to have this confirmed because I have pets and worry about their impact on my health.
I have tried many methods for pain control- drops (lubricating, steroid, Nevonac, etc) as well as pain medicines (ibuprophen, Vicoten, Norco) but I am hoping that there is something that I can be given for the daily pain so that I can function at my job until I am able to find an answer to the problem. Perhaps a pain patch or another type of medication can be used?
Lastly, the only option that I know of that I haven’t tried (from internet searching and several dry eye boards that I am on) is Dr. Toyos’ IPL treatments as well as Boston Scleral Lenses, which I know have solved some of the most difficult surface eye pain cases. I am interested in knowing if you think these may be an option for me. The Boston Foundation for Sight has reviewed my medical records thus far and believes that I would be a good candidate. I believe that to involve my insurance I would need a referral from a local ophthalmologist.
Overall, I am looking for a way to regain my life so that I can live free from the constant stress, depression, and anxiety that this constant eye pain is causing me. I would like to be able to get out of bed and “join” the world again in regular activities, work, etc.
Thank you for your help.
Hope this helps- sorry it is so long:
Dear Doctor XXX:
I have been suffering with severe dry eye for over three years. My main symptoms are continual severe burning, severe photosensitivity, and sometimes a “heavy” eye lid feeling. The most consistent diagnosis I have been given is Meiombian Gland Dysfunction, poor tear film, and possibly slight aqueous deficiency.
The eye pain affects all areas of my life especially work and social. I leave work four hours early on most days and spend most of my free time in bed with an eye mask on. I am desperately seeking some type of relief and for this reason I have seen (in the last 3 years) 9 ophthalmologists (including corneal specialists and one occuplastic surgeon), one dry eye specialist (optometrist), numerous doctors as well as alternative therapy specialists.
In this time I have tried:
1. punctual plugs- upper and lower- helped when I first started having eye pain but seemed to lose effectiveness. A month ago I had 60-90 day plugs put in my upper punctas. The right has fallen out, the left may still be in- I am noticing no relief however.
2. Most preservative free lubricant drops (I find no relief with lubricating drops)
3. Steroid drops- sometimes help, sometimes irritate my eyes
4. Azasite- 30 days- I am not sure if this helped
5. Lacriserts
6. Restasis (3 separate times for over 4 months each time, no relief)
7. Doxycycline 100mg
8. Supplements (omega 3’s), NAC, ALA
9. Washes (Steralid) and warm compresses (morning/night)
10. humidifiers
11. special goggles, sunglasses, etc.
12. Scleral lenses made by a local doctor which did not fit well and the vision was never accurate- I never wore these after I bought them and took them home.
13. Pataday
14. Pain medications- ibuprophen, aleve, aspirin, Vicoten (in various strengths), and Norco- no relief from pain medications
15. Acupuncture- no relief
16. Testosterone cream- didn’t seem to help
17. Bacatracin and Eurothremiacin ointment
18. Neurontin- 300 mg 3x a day
19. Homeopathic treatments- eye bright wash
20. Special diet- no wheat, no eggs, no dairy
21. Freshkote prescription drop
22. Nevonac eye drop
23. “Bandage” contact lenses
List of Eye Doctors I have seen:
• Dr. Katerina Kurteeva, MD- 361 Hospital Road Suite 327, Newport Beach, Ca 92663. Phone- (949) 642-3100
• Dr. David Wirta, MD- 1501 Superior Ave Suite 303, Newport Beach, Ca. 92663. Phone- (949) 650-1863. Fax (949) 650-4359.
• Dr. John Hovanesian, Corneal Specialist, MD, Harvard Eye Clinic- 24401 Calle de la Louisa Suite 300-312, Laguna Hills, Ca 92653. Phone- (949) 951-2020. Fax (949) 951-9244.
• Dr. Jeffrey Jacobs- Harvard Eye Clinic- Information same as Dr. John Hovanesian.
• Dr. Stuart Brown, MD- Chairman and Professor and Director of the Shiley Eye Center at UCSD, 9415 Campus Point Dr., La Jolla, Ca. 92093. Phone- (858) 534-6290.
• Dr. Dan Carver, OD Dry Eye Specialist, 11180 Warner Ave Suite 261, Fountain Valley, Ca. 92708. Phone- (714) 263-0800. Fax- (714) 263-2336.
• Dr. Alyssa Wald, MD, 2706 Harbor Suite B and C, Costa Mesa, Ca 92626. Phone- (714) 545-9162. Fax- (714-241-1345.
• Dr. Carl Garbus, OD fits for scleral lenses, 28089 Smyth Dr, Valencia, Ca. 91355. Phone (661) 775-1860. Fax (661) 775-1860.
• Dr. Farnaz Memarzadeh, MD Corneal Specialist for Doheney Eye Institute at University of Southern California- LA office- 1450 San Pablo Street, Los Angeles, Ca 90033- phone (323) 442-7100. Orange office- 2617 E. Chapman Ave Suite 301, Orange, Ca 90033.
In this time I also stopped all prescription medications that I was on to see if that had an effect on my eyes. I was off all medication (except ambien) for over 6 months and didn’t notice a change in my eyes. But, due to the anxiety/distress/depression of the eye pain I resumed the following medications two weeks ago: Zoloft 150mg, Xanax (as needed) and 100 mg of doxycycline.
For my eyes I currently do the following:
1. Doxycycline 100mg per day
2. FreshKote (started this a week ago)
3. BioTears supplements and anti-inflamatory supplement two times a day
4. Warm steam for 10-15 minutes morning/night, gland expression, Steralid wash twice a day
5. Humidifier in bedroom, eye mask at night
6. Sunglasses most of the day- even in the office at work
Also, my current dry eye optometrist treated me for possible demodex with tea tree oil. There was no progress from this.
I was been diagnosed with conjuncitvochalasis and had it removed from my left eye on January 28, 2009. The doctor was not sure the conjunctivochalasis was the source of my pain. I am still waiting to see if the surgery helped but as of now it hasn’t. I would like an opinion as to how this surgery is healing, as the area is still visible.
In the past I have been diagnosed with blepharitis and MGD. I have done everything available to get this “under control” (warm compresses, scrubs, antibiotics, etc). I have been told that the blepharitis is under control but that I have a recent TBUT of between 7-10. I would like to know if this is an accurate diagnosis and if so, then why nothing has helped?
One dermatologist diagnosed me with Rosacea (mild) could Ocular Rosacea be part of the problem? If so, then why doesn’t the Doxycycline relieve the symptoms? What else can I do?
Perhaps there is some underlying condition that the doctors are missing? Maybe something with my optic nerve? Do I need to see a neurologist or doctor of internal medicine? Also, I have had “basic” autoimmune tests run such as ANA and Sed Rate, which came back “normal”. Do I need other autoimmune tests run? In the past I was on a low dose of Synthroid but was taken off because without the medication my levels were within the “normal” range. My last TSH run about 6 months ago was “normal”. Just before my eye problems began I was taken off of Metformin. Previously I was considered “pre diabetic” but my blood sugar has been “normal” in routine tests since 2005.
I have also been told that allergies are not part of my problem but I want to have this confirmed because I have pets and worry about their impact on my health.
I have tried many methods for pain control- drops (lubricating, steroid, Nevonac, etc) as well as pain medicines (ibuprophen, Vicoten, Norco) but I am hoping that there is something that I can be given for the daily pain so that I can function at my job until I am able to find an answer to the problem. Perhaps a pain patch or another type of medication can be used?
Lastly, the only option that I know of that I haven’t tried (from internet searching and several dry eye boards that I am on) is Dr. Toyos’ IPL treatments as well as Boston Scleral Lenses, which I know have solved some of the most difficult surface eye pain cases. I am interested in knowing if you think these may be an option for me. The Boston Foundation for Sight has reviewed my medical records thus far and believes that I would be a good candidate. I believe that to involve my insurance I would need a referral from a local ophthalmologist.
Overall, I am looking for a way to regain my life so that I can live free from the constant stress, depression, and anxiety that this constant eye pain is causing me. I would like to be able to get out of bed and “join” the world again in regular activities, work, etc.
Thank you for your help.
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