Multiple Sclerosis Community
9.18k Members
Avatar universal

Could this be ON?

Hello all.  Hope you are all enjoying a new year full of new hopes and blessings.  

I have not been posting on this site much lately as I have been over at the Migraine site trying to find just where I belong still.  Closest I have come is possible Hemiplegic Migraine, however, I do not really fit in anywhere.  Guess I am still a limbolander.

I do have a question for those of you who may be able to provide some info for me, as I did not find this particular topic on the health pages.

My current symptoms are possible TN, facial pain, neck, jaw, temple, etc.  Also numbness and tingling in my left foot and hand.  I don't really know about the L'Hermittes sign (if I spelled that correctly) but I have noticed when I bend my head forward to pray, an uncomfortable buzzing happens on my left heel. That is recent. Also, my left hand is not working properly.  I can't tie shoes very quickly.  I tell my hands to do something but they just can't very quickly.  Also have some burning sensation in my back shoulder blade and some feelings of water on my back.  My foot feels very cold or wet at times and I am not able to bend my big toe forward.  I will try to concentrate very hard as this sensation in my left foot has made it difficult to put on socks and boots.

The newest symptoms that I am most concerned about happened yesterday.  I had the worst pain in my left eye I have ever felt.  I was rocking on the couch and holding my eye.  My poor family didn't know what to do.  I felt like I might be having a stroke.  I tried to react as calmly as I could but the pain was excruciating.  It was a stabbing pain and was made worse with moving my eyeball as if to look around.  Nothing was helping this pain.  I kind of chalked it up to some weird new symptoms from my atypical migraine diagnosis.  However, I have had no MRI or CT scan since 2008, about a year before my symptoms began.

When I woke up today, the pain was better but as the day progressed, my eye pain was getting bad again.  I do not notice a significant change in my vision, other than the black zig zags and the tiny circles that float around.  They are the type of floaters that are always present.  Vision is okay other than close up and night driving.  Have to wear readers for close up reading.

I read on here before about Optic Neuritis and was never really sure what that felt like and could it be ON with pain only and no real visual disturbance.  I currently take Tegretol, 400 mg/day and made an appt today with my GP to see if it could be increased.  Just wondered if anyone has had similar eye problems and any advice on what may have worked for them.

Oh, one more thing...I do not become nauseaous or vomit with these eye problems.  I used to with typical migraine, but these are anything but typical.

Thanks so much for your time reading and responding.  I appreciate it so much!!  Hope everyone's new year is starting off with promise of a blessed year!

7 Responses
198419 tn?1360245956
Welcome back, Tw-chick.

I can't remember if you mentioned in the past having your eyes checked by a neuropthamologist? Have you seen one? You should. You need your eyes! It sure is hard to deal w/pain you describe and try to remain calm. Sounds like you did the best you could given the situation.  I for one dilly-dally w/issues too but know it's best docs see what you are experiencing in realtime.

My initial thoughts are that if you can get to one, describe your symptoms only w/out putting a possible name to them, i.e., lhermittes, or TN, etc.  Best to keep to the concerning symptoms and let that steer the docs evaluation.

Happy New Year to you, too!
1453990 tn?1329235026
The "classic" Optic Neuritis (ON) is pain for 2-3 days, worse with extreme lateral (Left Eye looking far left) eye movement.  Pain will then reduce with visual changes that may include loss of visual acuity, loss of contrast, changes in color perception (typically reds,) central scotoma (loss of a field of vision.)  The most reliable detection method is VEP.  On exam, about 40% of ON  cases will have a NORMAL eye exam.

Avatar universal
Thank you Shell and Bob.  

I have an appt with a "head pain neuro" in July.  That was the soonest I could get in.  But my regular GP can at least up the dose of the Tegretol.  

Bob, today is day 3 and so far, no pain.  When it first happened it was like the ligaments holding my eyeball in place were stretched too far. Or a blunt pick was jabbing from behind.  It was in my left eye and hurt most when I looked left.  The sharp pain decreased over time and then it would only hurt when I moved the eye.

Shell, I had a regular optometrist (I think) visit when the black zig zags started.  My vision was normal.  Well, for a 43 year old.  Still need my readers, however, they really bother me when the face pain begins, can't stand them on my nose.  So I bought a lighted magnifying glass.  

I just remembered that before the pain began, I had tingling in my left hand, kind of like it was asleep.  Also, trouble talking.  Not so bad that others noticed, just like my tongue was too big.

I see my GP on Monday so I will ask about a possible referral to the neuropthalmologist.
I know a lot of my symptoms can still be explained by atypical migraine.  They are just so different from the migraines I've had since I was a kid.

Bob, do you have TN and ON?  How are your symptoms now?  I don't know what my face pain is, but I do feel a swollen lump above my ear when it is at its worst. I'm wondering if it could be a vein? Inflammation of something?  I don't know if TN truly fits.  I am able to wait out my pain and I understand TN is too painful to not have an abort med. I knew from a previous post you had TN. Also wondered about cluster headache. Doesn't exactly fit but I'm still in the "rule out" phase.

Thanks again for both of your input.  Just when I convince myself it is one thing, a new symptom shows and then I start questioning everything all over again. At least I have ruled out a few things along the way. I really appreciate ANY info!!

1453990 tn?1329235026
I had ON back in March '10 and TN starting in Aug.'10.  RRMS was diagnosed on 11/12/10,
If you can get into a Neuro-ophthamologist that is your best bet.  They may order a VEP since it is very sensitive to early ON.  My last MRI (along with showing new lesions) showed a "...slight decreased caliber of the left optic tract and right optic nerve..."  My TN has two types of pain.  There is the ache like a toothache from above my ear across half of my upper teeth.  Then there is the lightning that will cause half my face to contort and "scrunch up" and cause me to drive off the road if I'm driving.  I literally have to pull over!

Avatar universal
I feel like I could've written your post about TN! All the way to the middle of my teeth.  I was just driving home from church, talking to my hubby on the cell and just out of nowhere...BAM!!!
He knew right away what had just happened.  It is so scary when it is just me and the 9 year old in the car.  A neuro on the migraine forum told me that if it is hemiplegic migraine not to drive too much. Well, easier said than done since I live over 8 miles from the nearest town!  Too bad I fired my driver and the limo is in the shop. (Wink)

I really appreciate what you and Shell said about the neuro-op.  I will see if my GP can refer me on Monday, when I see her. Also, I am sorry about the diagnosis, with all that it brings. But I am glad you finally know what is happening and can start treating.  Are you on DMD's yet?

I am so thankful to have all of the knowledge of so many informed people on one forum.  I learn so much every time I check in. Thank you to all!

1453990 tn?1329235026
Yes.  Just finished my first 30 days of Copaxone.  I opened the second box yesterday.
Avatar universal
Do you still take Tegretol for the TN?  What has provided relief for the ON? I presently take 400 mg of the Tegretol but it does not give me the relief I need...YET! That's why the appt with the GP on Monday.  I know my dosage is very small compared to what it can be raised to, so I'm hoping for a bump up.

How did you do on the Copaxone? Any side effects? Does it take a while to feel the benefits? Hope it continues to do well for you!

Did you ever notice any relation to caffeine and your TN symptoms? Just wondering if my morning coffee is making my afternoon symptoms worse. I think it is and I'm trying to cut that back even more.
Have an Answer?
Top Neurology Answerers
987762 tn?1331031553
5265383 tn?1483811956
1756321 tn?1547098925
Queensland, Australia
1780921 tn?1499305393
Queen Creek, AZ
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease