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Anxiety about Intermittent Vision Loss With Trigeminal Neuralgia

Posted by SusanEllen66 @SusanEllen66, Aug 7, 2022

I’m having a biopsy done on my Temporal Artery this week to rule out Temporal Arteritis. I’ve had all the usual tests, CT, MRI, blood and all is normal. No inflammation present.
The surgeon said that I might have Trigeminal Neuralgia instead. My scalp hurts, headache, face numbness…
My question, has anyone else had loss of vision in one eye with TN?
Two weeks ago I lost all vision in my left eye 3 times between Saturday and Sunday. Each time lasted for about 1 hour.
I’m hoping for an answer soon because the rheumatologist has me on a very high dose of prednisone right now and I need to stop it if I can. Thanks!

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SusanEllen66 | @SusanEllen66 | Aug 9, 2022

I guess no one with PN has lost vision.
No response to my post.

REPLY
1 reply
SusanEllen66 | @SusanEllen66 | Aug 10, 2022

Long story short. I have several autoimmune issues, a rare eye disease, and now an unknown issue.
Every single test I have had over the last 2 weeks including MRI, CT, ECG, blood work, urine, neurological tests (EEG, VNG) are perfect.

I lost the vision in my left eye 3 times two weeks ago. It was accompanied by a headache, sore scalp and other things.
The initial thought was that I have an inflammation in my temporal artery, or I had a small stroke.

Anxiety is building because I feel like no one believes me. All the doctors are giving me the “I don’t know” look.
Thankfully I am having a biopsy done on my artery tomorrow. This eye surgeon said she is doing it for my benefit…hmm

I’m feeling foolish, and resentful. On paper I am a picture of perfect health.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 13, 2022
In reply to @SusanEllen66 "Long story short. I have several autoimmune issues, a rare eye disease, and now an unknown..." + (show)
@SusanEllen66

Long story short. I have several autoimmune issues, a rare eye disease, and now an unknown issue.
Every single test I have had over the last 2 weeks including MRI, CT, ECG, blood work, urine, neurological tests (EEG, VNG) are perfect.

I lost the vision in my left eye 3 times two weeks ago. It was accompanied by a headache, sore scalp and other things.
The initial thought was that I have an inflammation in my temporal artery, or I had a small stroke.

Anxiety is building because I feel like no one believes me. All the doctors are giving me the “I don’t know” look.
Thankfully I am having a biopsy done on my artery tomorrow. This eye surgeon said she is doing it for my benefit…hmm

I’m feeling foolish, and resentful. On paper I am a picture of perfect health.

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Hi Susan, I can imagine that you're very worried. Losing one's eyesight is a scary thought. I know that you've written before about double vision and other sight issues related to damage from a cataract surgery and possibly autoimmune issues.

Coincidentally, @agirlthing1977 started a new discussion that you may relate to here:
- Double Vision and Autoimmune Diseases like MG: Can anyone relate? https://connect.mayoclinic.org/discussion/double-vison/

Do you and your doctor think that this new vision loss is related to your diagnosis of polyarteritis nodosa, ophthalmic branch trigeminal neuralgia (TN) or possibly something new? Has the vision loss returned?

REPLY
2 replies
SusanEllen66 | @SusanEllen66 | Aug 14, 2022
In reply to @colleenyoung "Hi Susan, I can imagine that you're very worried. Losing one's eyesight is a scary thought...." + (show)
@colleenyoung

Hi Susan, I can imagine that you're very worried. Losing one's eyesight is a scary thought. I know that you've written before about double vision and other sight issues related to damage from a cataract surgery and possibly autoimmune issues.

Coincidentally, @agirlthing1977 started a new discussion that you may relate to here:
- Double Vision and Autoimmune Diseases like MG: Can anyone relate? https://connect.mayoclinic.org/discussion/double-vison/

Do you and your doctor think that this new vision loss is related to your diagnosis of polyarteritis nodosa, ophthalmic branch trigeminal neuralgia (TN) or possibly something new? Has the vision loss returned?

Jump to this post

My vision has not been a problem over the last 3 weeks.
I just had a biopsy done on my left temporal artery. The report is negative for Arteritis. All my tests are perfectly normal for someone my age.
I have to wait for my doctors to decide on a plan of action. There are several things that are being kicked around. What I am experiencing could be a neurological problem too so I have to wait. It’s very frustrating.

The Polyarteritis Nodosa damaged my large nerves so I would not be surprised if I have nerve damage around my head. However, they told me that Trigeminal Neuralgia doesn’t affect vision.
The eye surgeon who did the biopsy mentioned that the vision loss could have been caused by a retina migraine. She really doesn’t know.

REPLY
SusanEllen66 | @SusanEllen66 | Aug 14, 2022
In reply to @colleenyoung "Hi Susan, I can imagine that you're very worried. Losing one's eyesight is a scary thought...." + (show)
@colleenyoung

Hi Susan, I can imagine that you're very worried. Losing one's eyesight is a scary thought. I know that you've written before about double vision and other sight issues related to damage from a cataract surgery and possibly autoimmune issues.

Coincidentally, @agirlthing1977 started a new discussion that you may relate to here:
- Double Vision and Autoimmune Diseases like MG: Can anyone relate? https://connect.mayoclinic.org/discussion/double-vison/

Do you and your doctor think that this new vision loss is related to your diagnosis of polyarteritis nodosa, ophthalmic branch trigeminal neuralgia (TN) or possibly something new? Has the vision loss returned?

Jump to this post

The double vision I have is a result of damage to my 4th Cranial nerve. It’s quite different and only happens when I look down and sideways…. I see things one on top of each other, not side to side double…

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kenyalama | @kenyalama | Aug 14, 2022
In reply to @SusanEllen66 "I guess no one with PN has lost vision. No response to my post." + (show)
@SusanEllen66

I guess no one with PN has lost vision.
No response to my post.

Jump to this post

Hello,
I have TN, RA, Sjögren’s syndrome, the latter caused keratitis. I also suffer from CRPS, Arachnoiditis and Hashimoto’s
I never lost vision with the TN. The trigeminal does not go to the eye but I have eye pain and blurred vision due to the keratitis and once I could barely see but no total vision loss
I have a question about Covid though. I can’t find any group. This is my second week and I have severe anoxia and I feel grossed out by the smell of food
I did not lose my taste or smell but I had nausea and diarrhea and I can’t regain my appetite
I am actually grossed out by food and it’s smell
Help please!!

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