33 answers

I Am at My Wits end...any Suggestions, Experience?

I guess I could say this is a repeat question. So please be patient with me. I am a HUGE mama bear and when my children are in pain - I go nuts trying to make it right or better. I feel like I am fighting a ghost, if that makes sense. I asked mama's and papa's last year if they had any experience with this. http://www.mamapedia.com/questions/5303232742350258177

My son, now 10, has recurring eye problems. And ONLY in ONE EYE - his right eye. It is NEVER at the same time, it is NEVER after doing the same thing, etc. He has pain - deep, sharp pain as he calls it. Ibuprofen doesn't work. His eye ball does NOT get blood shot (like you would with a migraine or a head ache).

He has seen and been thoroughly looked at/examined by:
ENT
Pediatric Optometrist
Pediatric Ophthalmologist
Villmer Eye Clinic at Johns Hopkins

He has had:
his eyes dilated
an MRI with contrast
a CSCAN

Not one doctor can find anything wrong with his brain, his eye ball or anything to do with his head. So where do we go from here? What helps relieve the pain? An ice pack. When we went to Johns Hopkins - the doctor spent about 1.5 hours with us. She checked him - had someone else come in and look at him. His eye is NOT mis-shaped. No blood clots. Nothing that they can see.

What would you do next? Where would you go next? The pain is so bad sometimes he cries. And he is NOT a crier so we know he's not faking it. We went almost 4 months without an "episode". He can be fine for days or have another one the next day.

Thank you!

What can I do next?

So What Happened?™

thanks!! I wish it happened during electronics - TV, XBOX, Computer, DS, etc. He could be reading, walking, talking, eating - it's NEVER consistent.

he was tested for allergies - none. Sorry - I should have stated that.

I called the National Children's Center in DC. We have an appointment with Dr. Robert Avery - Pediatric Neuro-Ophthalmologist at Children's National - that is now scheduled for August 14th.

I called Dr. Parelhoff - he's not open for six months. They are seeing what they can do to get him in sooner. They gave me a reference for 3 others in the area.

He was just at the dentist in April - they did a panoramic of his teeth. So far - all look good!! I'll keep an eye on that one!!

@Kozmama - he says the pain is "in his eye" - he says it feels like someone is squeezing his eye. No complaints about teeth, nose or any other place on his head or body. When we went to JohnsHopkins - his eye starting hurting - the doctor re-checked him - another doctor came and checked him as well. Re-dilated his eye, brought another scope up and looked. That's when they recommended the MRI and the CAT-SCAN. Where they ruled out Macular degeneration and cataracts.

Featured Answers

Hmmm, does he have allergies? When my allergies are wicked, my sinuses make me feel like my eyeballs are gonna pop out! Maybe try some Sudafed?

Hope he feels better soon (and you, too!).

:(

7 moms found this helpful

I would take him to a dentist. I've read that sometimes, with some people, the formation of wisdom teeth can press on a nerve that affects the eyes. He could have a problem with a tooth that is forming in his jaw that is affecting the eye.

3 moms found this helpful

Shoot I just wrote a long answer that didn't post. Grrr...

Short version - conventional medicine hasn't found a smoking gun and you've ruled out anything that is physically obvious. My next stop would be a chiropractor. It really does sound migraine-like to me (I have had migraines for 20 years and my eyes never get red or bloodshot) and chiropractic can be great with alleviating strain on some of the pathways that trigger migraine.

2 moms found this helpful

More Answers

Hmmm, does he have allergies? When my allergies are wicked, my sinuses make me feel like my eyeballs are gonna pop out! Maybe try some Sudafed?

Hope he feels better soon (and you, too!).

:(

7 moms found this helpful

Neurologist would be my next step.

6 moms found this helpful

Have you ever looked at Sjrogen's syndrome (not sure I spelled that right)? It's autoimmune in nature, if I remember correctly.

I might keep a food and activity diary, too, to see if I can spot any patterns or possible triggers.

6 moms found this helpful

I am located in VA as well. If I were you; I would set-up an appointment with Doctor Edward Parelhoff (Ophthalmologist). He is the BEST eye doctor on this coast. I have been going to him since I was a baby. He has done multiple eye surgeries on me and had his partner perform the LASIK on my eyes. He is the best of the best. I'm sure he can find out what is going on. He is a very gentle, loving and extremely patient man and doctor. You will not be disappointed. People fly to VA just to go take their children to him.

The offices are located in Springfield and Woodbridge. Might be a bit of distance for you, but it is well worth it. I have also gone to see him when I had something in my eye. He was gentle and got the object out of my eye. Like I said; he has performed multiple eye surgeries on me and I have always felt safe. He treated me like his own daughter and would even "call" to check-up on me after my surgeries. He is reassuring and easy to talk to. He also dId my usual vision check-ups after my surgeries. :)

Here is his page on his web site. http://www.eyeconsult.net/meet-our-physicians/edward-s-pa...

Give them a call. :) They are always happy to help!

5 moms found this helpful

Could it still be a form of migraine though? What about a neurologist?

5 moms found this helpful

Are you positive it's not a migraine?
I get them a lot. My eyes don't always get blood shot and about half the time my migraines are behind my left eye. They are excruciating and many have brought me to tears (but I try not to cry b/c it makes it worse!). Ice helps. Darkness does too. No amount of ibuprofen touches my migraines. I have a prescription that *sometimes* helps, but most of the time I am just miserable for at least 24 hours.
Has he seen a neurologist?

4 moms found this helpful

Have you considered a chiropractor to check for pinched nerves (subluxations) in his neck?

It may sound strange if you don't know how chiropractic works but it would be worth a try to help heal his pain.

4 moms found this helpful

Hmm. No clue what it is, but...

I have something similar... You can't see anything wrong, but when when my left eye is having issues it feels like someone starts about 1/2 way through, and is driving an ice-cold (Not really the temperature, but that pain you feel from like an ice cream headache or when you touch something really cold for too long) spike deeper and deeper into my eye. It is seriously painful! BUT... there is nothing 'wrong' with my eye.

I have noticed that it tends to happen more during the times when I am more prone to allergies... but it does happen randomly throughout the year when I don't have any too...

I will say that as I have gotten older, it has gotten better. It probably peaked when I was around 12-13, when I would get the pain 2-3x in a month... then it started getting better. Now, I only get one or two a year.

The only thing that ever helped me was to gently push on my eye and massage that temple. The pressure seemed to help. Sometimes, I would use a cold, wet washcloth. (Ice pack was too cold for my eye..) This didn't really make it better at all... but it took the edge off a bit so the pain was bearable.

I still have no clue what actually causes it...

4 moms found this helpful

Optical neuritis can be caused by a virus. So, I would assume that the pain wouldn't present itself all the time or the neuritis be evident on exam. I'm just throwing that out there, as a possibility.

4 moms found this helpful

I suffered from migraines for years and never had blood shot eyes. It did however feel like someone was drving a spike through my eye though. Traditional pain killers never worked, and sometimes the prescriptions did not either,

Also, I know you mentioned you went to an ENT, did they check his sinuses etc? My husband will get severe sinus headaches behind one eye from time to time, but it is much worse when he is exposed to things to which he is allergic.

Good luck! I hope you find answers soon!

4 moms found this helpful

I would take him to a dentist. I've read that sometimes, with some people, the formation of wisdom teeth can press on a nerve that affects the eyes. He could have a problem with a tooth that is forming in his jaw that is affecting the eye.

3 moms found this helpful

Didn't read the other responses, so I'm not sure if this was already posted, but...

My ds used to get eye pain like that. No other health problems. No other symptoms. Very similar to what you're describing in terms of pain.

Someone suggested giving him Sudafed (not the watered-down stuff you can buy over the counter now, but the real Sudafed that you have to buy from behind the pharmacy counter, where you have to show your ID, the little red ordinary Sudafed formula, not the newer 12 hour one).

I gave him 2 Sudafed and it took the pain away in minutes. It was sinus pressure. There are many sinus cavities in our heads and not all sinus problems give you a headache or stuffy nose or whatever. For whatever reason, my ds' sinus "headaches" weren't headaches at all, only "eye-aches".

Anyway, it would be cheap and pretty harmless to have Sudafed on hand and the next time it happens, try giving it to him and see if that helps.

2 moms found this helpful

if i look at computer screens, tvs and so on for a while my eyes go blurry. i know its not the same but i would try and limit the computer and tv time dramitically. i know that doesnt fixit but for some reason his brain is saying NOOOOO to that screen.

I had sharp pains throughout my enitre body my entire life when i was little they did tons of tests and eventually jsut said some people have them and let it go. i guess even with our tecnology sometimes there isnt an aswer but that is a good thing too since if there was something major they wouldve found it. i would think its nerve issue

2 moms found this helpful

What about a neuoroligst?
Best of luck - I always value your comments and hope all is ok.

2 moms found this helpful

Shoot I just wrote a long answer that didn't post. Grrr...

Short version - conventional medicine hasn't found a smoking gun and you've ruled out anything that is physically obvious. My next stop would be a chiropractor. It really does sound migraine-like to me (I have had migraines for 20 years and my eyes never get red or bloodshot) and chiropractic can be great with alleviating strain on some of the pathways that trigger migraine.

2 moms found this helpful

Wow how strange.

Eye strain?
Dry eyes?
But he has seen so many specialists and they have not found anything wrong.

Ocular Migraine?
http://www.mayoclinic.com/health/ocular-migraine/AN01681/

Maybe, see a Retinal Specialist?
They are even more specialized and trained than an Ophthalmologist, and know more about the eye.
My late Dad, used to see one in our city.

Here is a link about it:
http://www.sarasotaretinainstitute.com/2011/05/what-is-a-...

2 moms found this helpful

Hello

this might sound nuts but when I had severe Tendonitis in my arm, neck and shoulder, I also had more headaches in my eyes.. Has any doctor mentioned, Temporal Tendonitis Headache? Check it out, much info online.. In addition, your son, being ten and active "might" have pulled or twisted a muscle in his neck or strained it some how.. maybe during a sport or any type of activity.. Could be the docs are over-looking other areas of his body and since they are only concentrating on his eyes and head area, perhaps the problem is rooted in say his spine? I mention this because you may have heard of the term "referred pain" it's when one part of the body feels pain (say the eye) but in fact the eye is not the root of the problem but instead might be a person's back.... thing is, with all the nerves in our bodies, sometimes you think it's one thing and turns out it could be another..

Keep us posted.. I wish you all the best

2 moms found this helpful

I'm so sorry for your son. I would like to second the suggestion that you keep a diary of each day's episodes (time, duration) or lack there of.

I have trigeminal neuralga and it feels like stabbing in my eye. The onset is sudden, severe, and can be over quickly or not. The cause is unknown. I am not suggesting your son has this, but it was my diary that helped the doctor diagnosis it.

All my best.

1 mom found this helpful

I would call a neurologist.

1 mom found this helpful

Hi C.,
I have a couple of questions... Does he say the pain is just in his eye, or does he say it is a head-ache? Does he ever complain about his teeth on that side hurting too? If the answer to these questions are yes, I would consider looking into him possibly having cluster headaches. They're similar to migraines, but they run in cycles. Often times they will be triggered by a change in seasons. The cycle will generally last a month or two with a headache once or more a day. Each headache will usually last an hour or two. They come on abruptly and are nothing short of agonizing.

If it turns out that he is suffering from cluster headaches, often times the dr. will prescribe migraine medication. My husband has them and he's had good luck with injectable Imatrex, but no luck with dissolving tabs Imatrex. His cousin also suffers from them and has found that starting blood pressure medication at the beginning of a cycle seems to knock them back.

I surely hope that it is not cluster headaches as they are completely debilitating and I can't even imagine a 10 year old having to suffer like that.

Good Luck!

1 mom found this helpful

I would go to a neurologist next. I don't have a clue what it could be, although I do get many of my headaches and some migraines affecting my eyes. Sometimes I have to really stop and think if it's both my head and eyes being affected at the same time (often it is), or if it's one or the other (often it is), and if it was one or the other which one was affected first. When I visit my neurologist she always checks my eye sight and she keeps close track of my ophthalmologist appointments, my prescription for my glasses, and the pressure in my eyes.

1 mom found this helpful

My migraines start as what I call an "eyeball headache"...my eye literally aches...then it eventually goes into a full blown metal pipe sticking though my eye and out the back of my head pain.

Have they tried migraine medication during one of his attacks to see if it would help??

My eyes never look different during an attack and I don't always have an aura or nausea...

I have cried through a migraine.

How did they rule out migraines??

I hope you find an answer please keep us posted!!

1 mom found this helpful

It's terrible when your children are in pain. Keep us updated.

1 mom found this helpful

Optic neuritis?

Migraine or severe allergies?

1 mom found this helpful

Have you gone to more than one of one kind of dr.? I mean - have you been to a second opthamologist? I would suggest going to a couple and saying - again - something is going on and no one can find anything - please help! I wish I had more help to provide. Best of luck!

1 mom found this helpful

I get eye migraines, but they are caused by hormonal changes. I'll see flashes of light and then get a dull headache that lasts for 3-5 days. I always get them either right before or the day of my period.

I recently had my eyes examined and they found that I did have an injury to my right cornea. Weird because I don't remember it being injured. The object that pierced it is gone, but they could still see the "rust" ring in my eye. I did have a major eye infection in this eye last year, but I didn't think my eye was actually injured (had a CAT scan and everything).

Not that this helps you at all, C., but I wanted to give you some {{{{HUGS}}}} and hope you find out the cause of these pains soon.

You and your son are in my thoughts.

1 mom found this helpful

I am not sure if I am totally off base with this, but does he ever complain of jaw pain? I have TMJ, and at times, experience the same pain in my eye. This usually happens after eating crunchy foods, and when my jaw muscles are tight( stress, and I grind my teeth occasionally) . It's a terrible shooting pain, and I relieve it by massaging my jaw joints, and around the temples. Not sure if this would help, but I just thought I would pass it along to you.

1 mom found this helpful

Even though his eye is not getting bloodshot, it could still be a migraine I think. I get migraines behind one eye and it feels like it's my eyeball that is hurting, but no bloodshot eyes. Have you been to a migraine specialist? You are doing the right thing by continuing to seek out a diagnosis. Keep going, you know something is wrong, and eventually a doctor will figure it out. If you haven't already, keep journals about what he eats and about his activities and what's going on.

1 mom found this helpful

From everything you have described - it really sounds like a headache/migraine that he is describing in his eye, when it is really right behind the eye (which in so many cases, that is how a headache/migraine presents itself). How have the doctors addressed the possibility of headaches? Ibuprofen & acetaminophen do not help migraines. Kids are not fully aware of how the body works, so when he says it is his eye, that doesn't necessarily mean it is his eye, but in the area of the eye. JMHO :)

Or, I could be way off base... I hope you find comfort for your son very soon. I know it is hard to watch them suffer. Good luck!

1 mom found this helpful

I got those rather frequently as a child. It was always "behind" one eye and yes, they were so very bad that it made me cry (which, in turn, made it worse). The only thing that would make them go away is if I went to sleep. I also went to the doctor, to no avail.

I continued to have those "eye aches" I called them for probably 15 years. I don't know if they were migraines per se, but they would flatten me. I still get them every blue moon, and still they don't go away unless I go to sleep. I've recently discovered that I grind my teeth at night and I understand that this can cause headaches. You may want to have your dentist check his teeth for any areas that are ground down (they'll know what to look for and can do this quite quickly). If it is related to grinding, wearing a mouth guard at night will help.

1 mom found this helpful

Ok, NOT trying to freak you out. and probably a big long shot because of the age, BUT I would see a neurologist and make sure you can rule out blood clots in the eye and make sure he isn't having any stroke like issues with his eyes. I can't remember the actual name of the issue, (in part because of my short term memory from MY OWN strokes, sorry) but, when I had my own strokes, I had SEVERE pain in one eye and it felt as though I was being rammed with an ice pick in the eye. Depending on the side you experience the stroke, it will be the opposite side for the eye. Now, if you are only having the eye issues, (and you CAN) your son maybe experiencing what is known as basically a stroke in his eyes. There is a "real medical name" for this and I am sure that you can google it, because I can't remember it right now. It would cause the pain, and eventually maybe even some spots in his vision if he went for too long untreated. (dark or light spots similar to if a camera flash were to go off) Not really sure IF this is the problem, but it was just another thing that you could rule out, and if it was the problem, well, it would probably be one of the more easily fixed ones with some meds as long as you caught it soon. I know for me all of the doctors kept saying my symptoms were not stroke because of my age, UNTIL it was obviously not anything BUT stroke and I landed in the hospital and was paralized on my right side and blind in my left eye. (I'm lucky to be alive) I was much older than your son, but I NEVER rule anything out because of age anymore.
I also wouldn't really rule out migraine 100% until a neurologist is the one to make that call. Lots of people get migraines early on that only have the pain in the eyes and a "visual" aura without any headache per say. Wishing you all the best and a speedy recovery!

1 mom found this helpful

1) I get 2 -3 triggers actually- kinds of migraines. None make my eyes bloodshot.

A- Tension triggered: When my neck gets tight it impinges on the ganglia along my vertebra ... Which sends an arching signal across my facial or trigeminal nerve (on the right side only)... Shoots across my face.. Then right through my right eye... and into my brain.

((If you google image those nerves, one looks like a hand across your face, the other a trident... You'll see the EXACT pathway it takes.))

The "fix" for this is "easy" but it's 100% preventative: massage of my head/neck/shoulders/back. Twice a month can keep me this kind of migraine free for months.

((To a LESSER degree, muscle relaxants, to interrupt the nerve transmission, but this sort of migraine is "domino" effect. Once the first domino is knocked over, it's too late.))

2) Sinus pressure triggered. Again. Stupid nerves on the right side of my face. Instead of getting squashed and start to yelp at my neck, it happens in my sinus cavity.

Another easy fix, that I can take at the beginning-middle... Pseudoephedrine Hcl (aka REAL sudafed, with ID but no Rx, from behind the pharm counter). God. Send. Love. Love. Love. 2 sudafed and a dark quiet place, and I'm right as rain in 20 minutes.

((These are NOT sinus headaches. I get those, two. Entirely different animal. These migraines, unblock my sinuses, they stop pressing on the nerve, and my brain stops freaking out.))

**** Sudafed helps with BOTH kinds of triggers, because it messes with the vasopressure. It's a bronchodilator, but it also steadies vasopressure (although not at normal levels, it stops the 'pulsing' that happens with migraines). With sinus triggered it will stomp on a migraine at any point. With tension triggered, I have to catch it EARLY. Otherwise I'm up a creek.****

3) Flat Light. (A lot of people trigger with bright light, I don't. Bright is fantastic. But in cloudy days? White skies/ grey skies/ indirectly lit buildings? SUNGLASSES. When I wear them in flat light, no migraine. When I take them off for as little as 15-20 minutes? Bam. Migraine.
__________
WITH EITHER OF THESE MIGRAINES HERE ARE MY SYMPTOMS ONE IS COMING ON BEFORE THEY'RE FULL BLOWN:
__________

- Increased facial senses (sight, hearing, smell, taste... Because of those freaking out nerves)
- Floppy speech (I start combining words, blanking on words, slurring my speech ever so slightly)
- Faster than normal or disjointed blinking
- Chittery/shivering jaw
- Ears pull back (can you wiggle your ears? It's minute, but if my ears start pulling back, it's a sign)
- Disjointed thinking / not thinking clearly

----------
COMING ON / Full on
----------

- Blinding pain. Which is what makes me think of your son. Because it feels like my right eye is going to freakin explode, or is being stabbed with ice, or is on fire. It can get bad enough that I'm doubled over holding my eye, or mild enough I just want to scream, but don't.

__________

I have VERY high pain tolerance. I rarely throw up or pass out from it... So in many ways these don't look like classic migraines (the nausea part). But they've been certified as what I'm dealing with

___________

My SON has been getting migraines of a similar nature since he was 5. HIS biggest TRICK?

Freaking Breakfast Cereal.

No. Lie.

Apparently, one of the biggest triggers for kids is a slight deficiency in certain vitamins and minerals. I don't know why fortified cereal helps, when chewable vitamins don't (although better than nothing)... But they do. Insisting he has cereal every morning stopped 80% of his migraines from ever happening.

((The other 20% of his are entire triggered by low oxygen levels.))

1 mom found this helpful

Hi, C.:

Call Atlas Specific in Newport News, VA and tell them your
situation.
I don't have the number.
Good luck.
D.

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