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Feeling better after some major detective work!
Hello All,
I've been reading this forum for quite some time, but never posted, well, because frankly the more I thought about my dry eyes, the worse I felt. I tried to do my best and not dwell on the problem too much, other than doing as much research as possible in order to be an informed patient.
That said, the Dry Eye Triumphs section has been a lifesaver for me many times, and offered a lot of hope, and a few clues that I believe helped me start to get at the root of my problems. If anything I can say can do the same for others I'd be irresponsible not to post here. Sorry if this is a long post, but it's been a long journey, and I'm still not completely through.
To recap: My severe dry eyes came on within a few months during the summer of 2006. After a few diagnoses of seasonal allergies (allergy meds did not help) and blepharitis (Minocycline made me feel terrible and did not help), I ended up in the emergency room in Nov of 2006 with two corneal ulcers. Many eye doctors and three corneal ulcers later (total of 5! ouch!) I finally found two doctors who, even if they didn't have a lot of experience treating DES, were very dilligent and concerned and finally started me on some decent therapies -- (lid massage, tapered steroid drops, flax, fish, and Restasis). I had severe MGD. Finally in June 2007 I was in a place where I only needed to use Restasis twice a day and nothing else. I credited all success in my treatment to the Restasis. Every month I continued to get better and even thought about trying contacts again.
Unfortunately, in Nov. 2008 I had a relapse just as severe as my first encounter with with DES, only this time I was ALREADY using Restasis, and luckily, because I had an eyecare team in place, was able to avoid further corneal ulceration through prophalactic steroids and topical antibiotics. My eye doctors were stumped and frustrated and things continued to get worse. I was really scared.
On top of DES, around the same time in Nov. 2008 I also started to experience some really strange problems: MAJOR GI distress, tingling and loss of feeling in my hands, dandruff and bad skin, night sweats, and joint pain to name a few. I got tested for every autoimmune condition under the sun with all results negative (Thank God), then decided to get tested for food allergies. This test came back positive for MANY, MANY common foods (gluten, eggs, and cane sugar to name a few) and a stool test came back positive for several bacterial infections and too much yeast. Before DES and this year I was NEVER EVER sick, and had a cast iron stomach. I began to think that my eye problems were due to food allergies or bacterial and yeast overgrowth. I completely changed my diet and was treated for infection and yeast. However, I still felt terrible, my DES was awful, and my Naturopath was just as stumped as my opthalmologists.
Since I had systematically begun cutting out all things in my life that might be contributing to DES, the one thing I realized I hadn't cut out was birth control. In 2006, with my first bout of DES, I stopped using birth control pills immediately, but because my eye symptoms didn't clear up until 7 months later, didn't believe that one had impacted the other. Besides that, I had been on the pill for 3 years before my symptoms began without any eye problems.
This time around, I had decided to use the Mirena IUD rather than the pill, specifically because my Primary Care Physician pushed it as a birth control method that had very little chance of causing dry eye. I had been using it for 10 months before my eye problems started for the second time. Both my naturopath and primary care physician told me that there was no way my IUD could be causing any of my health problems. But by June of 2009 I was desperate, and decided to clean the slate, and have it removed.
IMMEDIATELY many of my symptoms (night sweats, joint pain, tingling in hands) resolved themselves. Once I had my first period post-Mirena (around July 25th, 2009) my EYES FELT BETTER! I had my IUD removed June 19, 2009, and am happy to say that I am back to using Restasis two times a day, with maybe one or two preservative free eyedrops in between. My opthalmolagists were shocked. They told me in utter disbelief "your corneas are pristine!"
Looking back to my first bout with DES I realize I only started to get better once my cycle regulated. It took about 7 months after I stopped using the pill for me to have any period AT ALL, and that's coincidentally, around when I started using restasis and started to feel better. I have been constantly trolling online boards regarding Mirena IUD, and it is very common for any side effects from this medication to start showing themselves between 8 and 10 months after insertion -- which is exactly when I started experiencing my symptoms including DES. I believe in both cases my body is extremely sensitive to hormonal birth control, and my immune system finally just went wacko after prolonged exposure.
Unfortunately, although the Mirena is removed, I continue to experience GI problems and food allergies. However, I am hopeful that over time and as my body flushes out toxins and becomes more regular that I will feel better. And to be able not to think about my eyes 24/7 -- to be able to sleep through a whole night even -- is sheer heaven.
So ladies : If you are considering the Mirena as a DES-safe form of birth control, think twice -- and if you think birth control can't be your problem because DES didn't pop up immediately, it may still be causing some symptoms.
My fingers are crossed for a DES-free future, and though I continue to use Restasis, hope someday to be off it!
Thanks to all who have written on this board and especially to Rebecca for starting it!
Cheers -- Molly
I've been reading this forum for quite some time, but never posted, well, because frankly the more I thought about my dry eyes, the worse I felt. I tried to do my best and not dwell on the problem too much, other than doing as much research as possible in order to be an informed patient.
That said, the Dry Eye Triumphs section has been a lifesaver for me many times, and offered a lot of hope, and a few clues that I believe helped me start to get at the root of my problems. If anything I can say can do the same for others I'd be irresponsible not to post here. Sorry if this is a long post, but it's been a long journey, and I'm still not completely through.
To recap: My severe dry eyes came on within a few months during the summer of 2006. After a few diagnoses of seasonal allergies (allergy meds did not help) and blepharitis (Minocycline made me feel terrible and did not help), I ended up in the emergency room in Nov of 2006 with two corneal ulcers. Many eye doctors and three corneal ulcers later (total of 5! ouch!) I finally found two doctors who, even if they didn't have a lot of experience treating DES, were very dilligent and concerned and finally started me on some decent therapies -- (lid massage, tapered steroid drops, flax, fish, and Restasis). I had severe MGD. Finally in June 2007 I was in a place where I only needed to use Restasis twice a day and nothing else. I credited all success in my treatment to the Restasis. Every month I continued to get better and even thought about trying contacts again.
Unfortunately, in Nov. 2008 I had a relapse just as severe as my first encounter with with DES, only this time I was ALREADY using Restasis, and luckily, because I had an eyecare team in place, was able to avoid further corneal ulceration through prophalactic steroids and topical antibiotics. My eye doctors were stumped and frustrated and things continued to get worse. I was really scared.
On top of DES, around the same time in Nov. 2008 I also started to experience some really strange problems: MAJOR GI distress, tingling and loss of feeling in my hands, dandruff and bad skin, night sweats, and joint pain to name a few. I got tested for every autoimmune condition under the sun with all results negative (Thank God), then decided to get tested for food allergies. This test came back positive for MANY, MANY common foods (gluten, eggs, and cane sugar to name a few) and a stool test came back positive for several bacterial infections and too much yeast. Before DES and this year I was NEVER EVER sick, and had a cast iron stomach. I began to think that my eye problems were due to food allergies or bacterial and yeast overgrowth. I completely changed my diet and was treated for infection and yeast. However, I still felt terrible, my DES was awful, and my Naturopath was just as stumped as my opthalmologists.
Since I had systematically begun cutting out all things in my life that might be contributing to DES, the one thing I realized I hadn't cut out was birth control. In 2006, with my first bout of DES, I stopped using birth control pills immediately, but because my eye symptoms didn't clear up until 7 months later, didn't believe that one had impacted the other. Besides that, I had been on the pill for 3 years before my symptoms began without any eye problems.
This time around, I had decided to use the Mirena IUD rather than the pill, specifically because my Primary Care Physician pushed it as a birth control method that had very little chance of causing dry eye. I had been using it for 10 months before my eye problems started for the second time. Both my naturopath and primary care physician told me that there was no way my IUD could be causing any of my health problems. But by June of 2009 I was desperate, and decided to clean the slate, and have it removed.
IMMEDIATELY many of my symptoms (night sweats, joint pain, tingling in hands) resolved themselves. Once I had my first period post-Mirena (around July 25th, 2009) my EYES FELT BETTER! I had my IUD removed June 19, 2009, and am happy to say that I am back to using Restasis two times a day, with maybe one or two preservative free eyedrops in between. My opthalmolagists were shocked. They told me in utter disbelief "your corneas are pristine!"
Looking back to my first bout with DES I realize I only started to get better once my cycle regulated. It took about 7 months after I stopped using the pill for me to have any period AT ALL, and that's coincidentally, around when I started using restasis and started to feel better. I have been constantly trolling online boards regarding Mirena IUD, and it is very common for any side effects from this medication to start showing themselves between 8 and 10 months after insertion -- which is exactly when I started experiencing my symptoms including DES. I believe in both cases my body is extremely sensitive to hormonal birth control, and my immune system finally just went wacko after prolonged exposure.
Unfortunately, although the Mirena is removed, I continue to experience GI problems and food allergies. However, I am hopeful that over time and as my body flushes out toxins and becomes more regular that I will feel better. And to be able not to think about my eyes 24/7 -- to be able to sleep through a whole night even -- is sheer heaven.
So ladies : If you are considering the Mirena as a DES-safe form of birth control, think twice -- and if you think birth control can't be your problem because DES didn't pop up immediately, it may still be causing some symptoms.
My fingers are crossed for a DES-free future, and though I continue to use Restasis, hope someday to be off it!
Thanks to all who have written on this board and especially to Rebecca for starting it!
Cheers -- Molly
I am getting my Mirena removed today so I've started to do some detective work to see what I should try next. I am hopeful that it's the hormones in Mirena that have caused dry eye - although I can also see the possibility of a foreign object in your body causing inflammation! So far though, I'm definitely not seeing reports of dry eye with ParaGard like I have with Mirena.
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