Small Nerve Fiber Neuropathy (Idiopathic) EYE ISSUES

Oh, this looks oh too familiar! Have you seen a Neuro ophthalmologist? Have you heard of Idiopathic Intracranial Hypertension (IIH)? I spent almost 2 years at Mayo with a neurologist and even a Neuro ophthalmologist at Mayo who told me that nothing was wrong despite feeling like my left eye was going to come out of my head, having episode episodes that resembled everything like a TIA or a stroke with facial paralysis and two brain aneurysms. I was told none of these symptoms and signs had anything to do with what I was experiencing. And over a year and a half I was losing my vision having episodes of blindness and the headaches were becoming so bad that I couldn’t move and the pressure was mentally debilitating! I finally found another Neuro ophthalmologist outside of Mayo and come to find out. I have Paloma, optic nerve damage that is irreversible, there’s so much scar tissue around my optic nerves that I do not get adequate blood flow. I now have so much pressure that has been built up in my brain that pushes on the nerves which supply blood flow to my facial nerves that I have permanent nerve damage on the left side of my face. Yesterday I met with a world renowned Vascular and Interventional Radiology, and Neuroradiology who specializes in intracranial aneurysms and IIH. So after almost 2 years of suffering, I now have two new doctors outside of Mayo that I can finally see light at the end of the tunnel.

Hello there !..You don't mind me asking, but are you male or female ?..
What seems to be the problem with the eye exactly. What kind of feeling or sensations do you experience with this condition or sickness, if I may call it like this.

@quincy007
I’m a 37 year old female

@britt0220 Thanks for your reply.
I hope that you will find the correct medical treatment and care, to heal yourself from your condition. As you know, the one thing or ailment, will always move or develop into something else too, that will worsen your current medical condition. Take care.👋

@britt0220 I am glad to hear you found some really good Doctors. That is so important when we suffer from something and cannot find help. I found out I have Occipital Neuralgia and I also have dry eyes. I was diagnosed with Small Nerve Fiber in 2021. I woke up two days after I retired and I had pinpricks (paresthesia) from head to toes and in my eyes. They were going off 24/7. After three months of waiting I saw a neurologist that diagnosed me with small nerve fiber. I took Alpha Lipoid Acid and then I was rarely getting the pricks. Fast forward to Feb. 17th of 2025 and I was on the phone and I had an episode of head pressure and blurry vision. It lasted about two minutes. I went to the hospital and they did a scan and found nothing. They held me for two night on a stroke protocol which I did not have. After two nights a Neurologist came in the morning they were going to discharge me and he stood there and said, "For lack of a better term we are just gonna call this a TIA." So he labeled me. If you don't know the cause just tell me. Also as a Doctor you could have sent me somewhere they might help me but no. The other Doctor I saw twice and the first time he said, " You need to get your Blood Pressure under control. So I called my husband and told him to give me my blood pressure readings that I had taken at home and when that Doctor came back I showed them to him. My blood pressure was fine. So he backed off. My blood pressure was not the cause of my problem. Nobody could figure it out. I went to see several Doctors including a Neurologist (the one who diagnosed my Small Nerve Fiber. He could have diagnosed my Occipital Neuralgia. But he didn't. Some blamed my blood pressure. Small Nerve Fiber could be the cause of my Occipital Neuralgia. My brother lives in Houston and my sister used to live there. She told me I should look at the Doctors and Hospitals there. I did and that's when I discovered a Neuro-Opthalmologist. I did not know they existed. So I got two appointments. One in the am for a Neurologist that also treated patients for headaches. When I saw other doctors at home I would tell them I had head pressure and they would call it a headache. I told them what a headache was and this was not it. I also had an appt. for a Neuro-Opthalmologist in the pm. So I saw the Neurologist first. He recommended an antidepressant and I told him no. I can't take those. I did but I could have written a book on all the horrible dreams I had with people coming after me. In one of my dreams I was rolling away from someone and I rolled right out of bed. I did not get hurt. I was travel nursing at the time. My husband came to visit for a bit and after he left I woke up kicking his side of the bed like crazy. After the Neurologist appointment I went to the Neurologist-Opthalmologist and she said I had Occipital Neuralgia and sent in a script for Gabapentin. I was given 100 mg to take three times a day. I started taking it and noticed fairly soon some head pressure. I never had headaches. I had to increase my gabapentin because I go for awhile and everything is good then......... I get pressure. Now I read that gabapentin can cause head pressure. ????? I will find out about that. A headache means my head aches. When I told the doctors I saw that I got head pressure they put headaches in their notes. I had headaches years ago when I got sick but hadn't had any since. I would tell the Doctors when I get headaches my head would pound. Now when you say Head then ache it should mean something. If I say head then pressure it means I feel pressure not ache. I swear . I know the medical field is definitely not what it used to be. There are some very good doctors out there but as a retired health care professional I haven't seen it much. WE have to ADVOCATE for our selves. I did and I would do it all again if needed. It is not easy I know that. But I remember hearing this: The squeaky wheel gets the grease! Having issues like this and worse is not easy at all. I know. No one can say "I know how you feel." Because they haven't experienced it. @rnlorena

@fluegelb I haven’t gotten on Mayo as much as I did before. Sorry I am now just answering this. After I had the head pressure and blurry vision in February the next month it was the eye thing. I was sitting watching TV and I noticed a feeling come before my right eye. Not long after that it came before my left eye. Then it surrounded my eyes. It wasn’t painful but it took me awhile to figure out a term for the feeling. It was subtle. So I have dry eyes. I also appreciate the information about SNF and Covid. It was strange that I woke up and had full onset of pinpricks head to toe and in my eyes going off 24/7. I was in the 5-6 week time frame for having a reaction. Alpha Lipoic acid has worked for me. I still get pricks
Just not 24/7 Thank goodness. Now having said that I now have Occipital Neuralgia which can be caused by SNF. I got diagnosed in August. I started on Gabapentin and after a short while I thought okay this is working. I have noticed that I am getting breakthrough head pressure. It causes my blood pressure to go up. I have an appt. on December 1 to see a Neuro-Opthalmologist then. She is about an hour or so away from me. My goal is to find out if I could get surgery for this. They cut the nerves. I know how picky they are about surgery If there is anyone out there that has had surgery due to occipital neuralgia I would love to hear about it. I do have stuff going on in my neck that I thought was causing this. An Orthopedist asked me if I had pain going down my arms and I said no. Well unless you have that I can’t help you. When I went to Texas I saw a neurologist and I asked him a question that I didn’t want to ask. It was this: Can I have Head Pressure and Blurry Vision again. His answer: Yes. When I went to Doctors where I live nobody could help me not even my neurologist. I say this to anyone who has issues and seeks help but doesn’t get help. Don’t give up. Advocate for yourself. Believe me I know it isn’t easy. I do know how frustrated I was. @rnlorena