My son has developed disturbing new symptoms over the past months.
Current symptoms of last 4 weeks: chronic, continual low level (non-throbbing) pain over right eye (on forehead) which can suddenly escalate into intense, severe (non-throbbing, but variable) pain. This is almost always accompanied by a vision change such as tunnel vision (up to several minutes), blurred vision, partial color vision loss, and sometimes short periods of double vision.
Triggers "seem" to be:
* eating (as most attacks occur within 5 - 30 minutes after eating), sometimes immediately on first bite.
* lying down at night (attacks w/o eye symptoms) occur within 5 minutes
* sometimes random (walking into a room)
He also has been reacting to smells - feeling nauseated, not well - things that never happened before (pot pourri, cleaners, etc ...). But these have never caused him the head pain or eye symptoms.
Prior to these symptoms (previous 3 weeks) , he was having only ocular symptoms with no significant head pain, but these morphed over time into always being accompanied by debilitating head pain. He recovers after 20 - 30 minutes and then improves after a few hours.
Advil has sometimes helped.
These happen at least once a day and sometimes multiple times of day. The series of events are:
1. Tunnel vision or double vision or blurred vision
2. Instantly followed by Head Pain (fright frontal area)
3. Intense pain for 20 - 30 minutes eventually subsiding (usually within 2 hours), but on one particularly bad occasion had multiple instances of eye changes and pain over the course of 6 hours - stopped counting the change from blurred - double - single after the 15th change.
Prior to these occurrences, he had several sustained bouts of double vision (no other symptoms) lasting 12 days (with single vision remittance of 11 days, then 13 days of double vision, single vision for 10 days, double vision for 5 days.
Prior to that had a lot strange abdominal pain and reflux - no evidence of h. pylori, full GI workup showed no abnormalities.
Occasionally, he complained of vertigo and dizziness.
Most of the opthalmologists and neuro-opthalmologists suggested that his original double-vision was caused by a 4th cranial palsy from a "possible" congenital strabismus which had "decompensated." None really wanted to comment on his current symptoms - except the neuro-opthalmologist said that if he had the strabismus surgery 90% of these problems would go away and that trying to reconcile a strabismus might put you in a spasmodic state.
Note that this strabismus was never noted until 2 years ago - prior to that point at age 5, the eye doctors noted only a convergence insufficiency. His strabismus measurement has remained stable over the past year.
CATSCAN - no abornal findings.
LP - no increased cranial pressure - no other out of range findings.
MRI with and without contrast - no findings (although the first one w/o contrast) noted mild to moderate sinus disease. This was not noted in an MRI with contrast 2 weeks later.
Things that seem to have helped with the instances triggered by eating (restricting suspected foods).
Current medications (allegra, singulair).
History - many environmental allergies and many food allergies that show up on the IgE skin ***** tests, but have never noticed a true histamine reaction to any of these foods.
Severe mold exposure from a bedroom (probably was in it for 3 years) - entire exterior wall removed and rebuilt - all sorts of allergenic and toxic molds. Note: currently has high IgG levels of many molds in system. These were also evident in blood work 1.5 years ago, but no one really picked up on it to the degree that he was being exposed continually. Removal from moldy remove this February resulted in disappearance of chronic excema-like rashes and nosebleeds.
Grinds his teeth at night.
Allergy doctor does not think that these symptoms could be related to consumption of foods.
He has taken abx for sinus and other infections but is currently on no specific medications other than the allergy meds. Was on ceftin during the escalation of these eye and headpain symptoms, but has been off this med for 2+ weeks and symptoms, though lessened (maybe because of diet changes) are still here.
Had also tried taking him off Singulair for a while to see if there was a connection - no change.
I am trying to understand if there is any relationship between his strabismus (left superior oblique palsy) and these other symptoms. If there is some pathogenic nature to all of this.
And, if these are "migraines" - he is not photosensitive during attacks, does not call the pain out as "throbbing" is not nauseated, does not get any prodrome indicators, etc ... And if they are, what is triggering them.
He has been on a migraine diet, and although this seems to prevent attacks during eating, I am at a loss to understand the problems at night.
Get that boy to DR. Jones in CT PERIOD! The only pediatric lyme literate doctor .
The current lyme tests will miss this but all the symptoms are there. Don't expect help from anyone who does not see this for what it is.... SERIOUS. That poor kid.
Read "Cure Unknown" . That doc works 7 days a wek and has helped 10's of tousands of kids with complex lyme and co-infections. This makes me so angry that pediatrics miss this constantly. Thiis a political disease and every dam doc knows the tests have been unreliable - there are no good tests for bartonella- Lyme and co-infections are supposed to be clinical dignosis's just because of that. No more Guinea pig- Go right to the source for your poor son. He will have good days and bad days but this will destroy his lif if it's not addessed NOW! Lyme destroys the immune system, but all that can be reversed with knowledge. I'm sorry, but this makes me so angry that the doctors are not paying attention and letting kids and people suffer , horribly. Please go see Dr. Jones in CT.
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