Just wondering if anyone else experiences pressure or visual disturbance in the eye on the side your TN effects. My TN has been relatively quiet since my first major attack that lasted 12 days. But in the last month, I have been having a strange sensation of pressure and my vision is blurry on the right side which is the side affected by my TN. I have had some sharp pains and a few headaches behind that eye since this all started, my husband says it doesn’t look swollen to him but I definitely feel the pressure and something I can only describe as a strange sensation on that side. Thanks in advance for your insight!
Do you take baclofen?That can cause eye changes.Other than that-I don’t know.
Wishing you health
I often feel like my eye pain and pressure is the worst part of my TN. I tell every doctor I want to take a melon baller to it and scoop it out. gabapentin had zero effect on it. I am now taking 25mg of tramadol every three hours, and while it doesn’t eliminate the pain, it has decreased. it was so bad that I would rather deal with the tazer-like strikes through my head than the eye pain. and here in austin it’s cedar fever season on top of that. I was out of my mind. keep tramadol in your notes if this feeling doesn’t go away
Thank you both! I am actually on baclofen as I had wanted to avoid anti-seizure meds if possible. As I’ve looked back at my medical information and thought about it although my first big attack happened a couple months ago I’ve been having some much smaller ones over the last 2 years that I had contributed to dental issues or my TMJ. The sensation in my eye has just started in the last month so it could be related to the TN being more active or the baclofen.
Have you tried clonazepam.?
It is helping me right now.
Last narcotic was at 7AM
I am hoping things get better for both of us.
I haven’t. I have two autoimmune diseases I’m being treated for so I’m doing my best to limit the medications I take, as I’m already on weekly chemo and steroids. However I think my steroids have helped control the flares with the TN as I have to take it very often. I’m hoping the neurologist can give me some more insight on Monday.
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I definitely have trouble with the eye on my ATN side. I had to give up wearing contacts because, in general, ATN makes that eye drier than normal. But of course then I have days when that eye weeps and per internet research that can be caused by TN as well.
I don’t get pain in the eye itself but I do get the feeling of a hot tack being driven into the upper corner of my eye next to my nose. Which is right where one of the TN branches end, so, there you go.
I have the same feeling. It starts above the eye and proceeds downward at about a 45 degree angle to the point of the cheekbone. I have been putting away a lot of gabapentin and that worked for a while. I have now cut the gabapentin back to 300 mg per day and we are trying cymbalta and that seems to keep everything in check. Let’s put in a “however”, and say that there are times when it tried to get worse but just wait a while and all goes back to a pressure sensation. I don’t think there is any miracle drug out there as I have had all of the usual ones. The cymbalta is doing good at getting off the weight that the gabapentin caused.
Willie123
I was finally able to see neurology yesterday and I must say the NP I saw was amazing. She took 30 plus minutes just to build my history before she even started the exam and asked what I felt were very relevant questions. I even remarked at one point that this pain and sensation made me feel like I was crazy since at one point you’re experiencing mind-numbing pain and the next minute its like it was never there. She literally turned around in her chair and said, You are not crazy, this is a very real thing. That made me feel like although she couldn’t physically feel what I was going through she validated that this was not just in my head.
Right now since my symptoms are in a little bit of a holding pattern with only a few zaps per day and the sensation in my eye, upon my request we are not going to add any more medications. With my AI disease, I am so exhausted all the time and we discussed how some of these medications can make you very tired and some are not a good match for the weekly chemo treatments I am on for my AI issues. However, she did order an MRI with and without contrast of my head and orbitals to rule out optic neuritis due to the strange feeling in my eye. She said she really felt this was being caused by my trigeminal nerve and my optic nerve being so close that when the TN was inflamed it was jumping onto the optical nerve a little bit but she wanted to make sure she wasn’t missing anything since my symptoms presented pretty straightforward as TN. She is also referring me back to my Opthmalogist for a thorough eye exam.
Overall, I think she did an amazing job of explaining what was going on, doing a great job collecting H&P and making sure we were ordering the right tests. Hopefully, I will have more to report following my MRI’s. Thank you everyone for the gret information!
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My partner used to describe her sensations like “Helmet Head”, kind of like a swollen numb sensation, until the shocks ofcourse.
Her primary activity is in the V1 branch, so, right eyebrow, forehead & scalp, when it aggravates the V2 branck kicks in, it goes down side of nose and right upper lip becomes major trigger, even though the pain/shocks are felt in the forehead & scalp.
I’m curious as to what autoimmune condition you have, my partner recoverred from Graves Disease (Hyperthyroid) just three years before the TN kicked in?
Hi Sparky
I had the hyperthyroid last year/It has stabilized in the normal range.Not sure whether it is the selenium supplement ,or the brazil nuts or just life that set it back.Nodules were normal on biopsy.
Just being monitored every 6 months now.
I have Dermatomyositis with Lupus overlap, I am currently on and off of prednisone as I flare as well as plaqunil daily and methotrexate injections weekly.
Hi LucyLee, I have had a MVD and I get that kind of pain. But if you are having it you should see your DR. about it. You may be having more then just TN pain. Usually vision problems like that along with a headache could be a warning about other things going on. Please see a Dr. and have them tell you what it it. K? Cool. Wheels 4 legs said that. Have a good day.
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Thank you! I’m seeing my Opthmaologist on Tuesday to rule out any issues with my eyes and I have have an MRI scheduled with and without contrast and an MRI of my orbitals. My providers are being very proactive in ensuring I don’t have anything else going on. Thank you!!
I am sorry that you are going through chemo on top of TN pain. As for the eye pressure, I have that and I use ketorolac eye drops. This, for me, gets rid of the pressure. Your best bet is to go to an opthamologist to have him/her take a look just make sure there is no damage and /or to confirm there is swelling behind the eye. This is what has happened to me. Wishing you the best!!
You may want to wait on the MRIs until your ophthalmologist appt. A good opthamologist will be able to determine if you have optic neuritis without needing an MRI. That is what I have. The eye doctor will be able to tell by looking at the back of your eye and surrounding tissue. When you do have an MRI to look for nerve compressions, please make sure they will use the CISS, VIBE, or FIESTA protocols. These are the best ways to look for issues. A regular MRI or one with contrast, will not show where the damage is. This information was provided by Dr. Brown, who is a medical advisor for Facial Pain Association.
Thank you for the information! The MRI is to ensure I don’t have a tumor or MS brewing and to also get another view of rule out optic neuritis. I see the Opthamologist on Tuesday so that will happen before my MRI. I’ve been blessed with a great neurologist whose been good to listen to me and make sure she covers all her bases.
Best of lick to you we all know what a devastating thing this TN is.
I’m so sorry that you’re having this addition to your list. I know it is frustrating.
Are you experiencing any tearing from your eye? It might be when these other symptoms occur or not. There is a condition called Hemicranial Continua which is (also) not very common or known about.
I have GPN, TN, and VN on the right side which all returned approximately 4 years after MVD. Their return was kicked off by blurry vision, pain, and a sensation of pressure in my right eye. It took a trip to Mayo and seeing neurologist who specializes before receiving a diagnosis.
It is very easy to diagnose, as it responds to a non-steroidal anti-inflammatory called Indomethicain. In my case within 15-20 minutes of taking the first dose I could feel the pain being peeled away like a mask. I thought I was crazy because the effect was so quick and dramatic.
A word of caution it can cause intestinal problems. I had very bad diarrhea and had to stop. I have taken it since then as I decided I would rather, sorry to be crude, spend time on the toilet than the pain I was experiencing.
I certainly don’t know if this is what you have going on, but it might be worth mentioning to your doctor.
Good luck