Vision Issues

My TN affects how my eyeball feels. It feels like it is in a clamp on a bad day. On a not-so-bad day, it feels "different". I had an eye exam with a LensCrafters optometrist last Sunday. Always concerned about glaucoma and macular degeneration because my mother suffered from both, I asked if everything looked okay. She said as to the typical things like that, my eyes look fine. She said, however, that she saw "tortuous blood vessels" in my eyes. She asked if I had any health issues, and I told her about TN. She had heard of it but didn't know much about it. She didn't know if TN would cause my eyes' blood vessels to appear "tortuous". I asked what "tortuous" meant, and she said that normal blood vessels meander around, but she otherwise couldn't define tortuous blood vessels. She suggested I mention this to the doctor treating me for TN, who I see next week for the result of my brain MRI done on December 23rd. Meanwhile, I have looked up "tortuous blood vessels" online and discovered that it means they are bent, not meandering, as if being "tortured". It can be an indication of a lot of different health issues, including high blood pressure. I suspect my BP has been a little high -- at most medical appointments I've had recently, it's been higher than my normal 120/80. I always figured it was a little high because I'm always in a little pain, whether from TN or from my herniated disc at C4. In the end, she suggested that I might see a neuro-opthamologist -- most doctors in this sub-specialty are only located at medical universities. Thank goodness I'm close to the Medical College of Virginia and the Virginia Eye Institute! BTW, I hadn't had my eyes examined in about 2 years -- I've been all tied up with the death of both of my parents and their estates, as well as dealing with health issues that popped up after they both passed, and just haven't been to any "routine" medical appointments. I could always pass a driving test without my glasses, but now I don't think I could. She thought it was normal for a 50-year-old to see drastic changes in vision over a 2-year period. I can tell I need a new Rx because I can't see my music when playing the piano. At any rate, I was just looking for some feedback on this issue. Thanks to all who can contribute ...

Hi there CindyLou and Happy & Healthier 2016. Sorry to hear about your parents passing and all the stress you've been under. When my TN sympoms started almost a year ago, I started seeing blurry and went to have my eyes checked and the new prescription does not help at all, I see blurry when I have an unbearable headache and it can last for days....so I feel for you and I might need to see a neuro-opthalmologist myself. Time will tell. Anyhow, let us know how your appointment goes. Take care!

Yes, when I have a bad day, my vision is also a little blurry. It's nuts!

Hi Cindylou.

Sorry you have been through so much. And sorry to hear about your parents. My Tn always resurfaces or flares during very stressful times in my life.

I have trouble with my left eye. When I have a flare up in that area I get blurry vision on that side, as well as tearing, the feeling of something stuck in my bottom eye lid, swelling, muscle spasms above my eye and of course a lot of pain.

My eye checked out fine and my vision returns to normal when the flare ends.

I have bilateral atn in all three branches so I have different areas that flare up.

I have talked with lots of other sufferers that have these symptoms. And gradual eye sight and hearing loss is also something I have heard of on the affected side.

Keep us updated on your journey. And good luck with your test results.

Jane

I've had 2 different flares put me in the ER -- The first was in July 2014. My mom died that May, and I was executor of the estate (there are 3 of us). I had a toothache. The ER thought I was nuts. They said, "We're not dentists." Well, DUH! But the pain was so bad that I felt like I was gonna pass out! My bro & sis had just reamed me out and accused me of misusing my mother's money, and I had to make a spreadsheet of the checkbook register and other assets. I think all of this set it off. At the time, I didn't even know what TN was.

I'm on amitryptaline now, but I go to great lengths to make sure I don't get too stressed out. As a musician on the side, I'm often asked to do short programs or do all the music for weddings ... I'm saying "no" for the time being. No more than one song -- usually the National Anthem at a local sporting event or one song in church every few weeks. That's all I can handle. It breaks my heart, but my plate is full with a full-time job that I love, a part-time job that I also love, and a teenage son (and OH how I love him too!). That's it. Plate full.

I'm experiencing blurry vision and feeling like something is in my eye that I can't get to. I also have occasional swelling, according to my co-workers! I thought it was just from crying, which seemed to release some of the pain for some reason.


justjane37 said:

Hi Cindylou.
Sorry you have been through so much. And sorry to hear about your parents. My Tn always resurfaces or flares during very stressful times in my life.
I have trouble with my left eye. When I have a flare up in that area I get blurry vision on that side, as well as tearing, the feeling of something stuck in my bottom eye lid, swelling, muscle spasms above my eye and of course a lot of pain.
My eye checked out fine and my vision returns to normal when the flare ends.
I have bilateral atn in all three branches so I have different areas that flare up.
I have talked with lots of other sufferers that have these symptoms. And gradual eye sight and hearing loss is also something I have heard of on the affected side.
Keep us updated on your journey. And good luck with your test results.
Jane

Hi again Cindylou
The worst attack I ever had was shortly after my dad died. It is impossible to avoid stress in life. It is obvious to me that our bodies deal with stress very differently. Your symptoms sound very familiar to me. I avoid the ER. I have only gone there twice for TN and neither was a very good experience.
I was on Amitriptyline for a year and it worked very well for me. I am on nortriptyline now. I don’t think it is quite as effective but the side effects are less. I would go back on Amitriptyline if I needed to.
Wishing you a pain free evening.
Jane



CindyLou said:

I've had 2 different flares put me in the ER -- The first was in July 2014. My mom died that May, and I was executor of the estate (there are 3 of us). I had a toothache. The ER thought I was nuts. They said, "We're not dentists." Well, DUH! But the pain was so bad that I felt like I was gonna pass out! My bro & sis had just reamed me out and accused me of misusing my mother's money, and I had to make a spreadsheet of the checkbook register and other assets. I think all of this set it off. At the time, I didn't even know what TN was.

I'm on amitryptaline now, but I go to great lengths to make sure I don't get too stressed out. As a musician on the side, I'm often asked to do short programs or do all the music for weddings ... I'm saying "no" for the time being. No more than one song -- usually the National Anthem at a local sporting event or one song in church every few weeks. That's all I can handle. It breaks my heart, but my plate is full with a full-time job that I love, a part-time job that I also love, and a teenage son (and OH how I love him too!). That's it. Plate full.

I'm experiencing blurry vision and feeling like something is in my eye that I can't get to. I also have occasional swelling, according to my co-workers! I thought it was just from crying, which seemed to release some of the pain for some reason.


justjane37 said:

Hi Cindylou.
Sorry you have been through so much. And sorry to hear about your parents. My Tn always resurfaces or flares during very stressful times in my life.
I have trouble with my left eye. When I have a flare up in that area I get blurry vision on that side, as well as tearing, the feeling of something stuck in my bottom eye lid, swelling, muscle spasms above my eye and of course a lot of pain.
My eye checked out fine and my vision returns to normal when the flare ends.
I have bilateral atn in all three branches so I have different areas that flare up.
I have talked with lots of other sufferers that have these symptoms. And gradual eye sight and hearing loss is also something I have heard of on the affected side.
Keep us updated on your journey. And good luck with your test results.
Jane