Hi,

I'm trying to understand if I should pursue a neuro-opthomologic physician review. I've seen several neurologist and my opthomologist and none indicate they would necessarily send me to a neuro-opthomologist, but they are not adamant.

The symptoms that I'm concerned about are:
-intense increase in headache with vertical scanning of Right eye (and tightening in back of head). Some increase in headache with vertical scanning of left eye
-intense increase in headache with reaction time test without voluntary eye or head movements.
-trouble with reading and dealing with rolling screens
-limited reading endurance unless prone with neck supported
-balance (could be vestibular)

My PT believes the balance issues are more towards a neurological issue than vestibular (ENT physician scheduled for Dec 2019). She's been working with me for 4 months.

My vision therapist has diagnosed me with convergence insufficiency and vertical strabismus left eye. I also have keratoconus in both eyes (right eye is severe) which is complicating things for some testing.

My headache is mostly eliminated except with visual engagement (e.g. Vision therapy). The cervical area is returning to normal range of motion, except when exacerbated by various stressors (visual being one).

I'm now 5 months past my last big bump.

I've sustained several bumps on my head in the past 12 months, along with a car accident 3 years ago (from which I thought I'd fully recuperated within several weeks). The most recent larger bump in May '19 was accompanied by additional symptoms of dizziness (not vertigo), vision changes, balance issues, and mild nausea, in addition to original headache, fatigue, tinnitus, noise sensitivity, cognitive inefficiencies, slower reaction time). Many of my symptoms have lessened over time, but it is whack-a-mole (some go away, others recur).


I've been to a number of physicians:
3 neurologists, all of whom say something different, but nothing has been clearly diagnosed. My first 2 recent bumps are so inconsequential, several are pursuing other potential diagnosis.
Primary care
Physiatrist (rehab center)
D Osteopath, neuromuscular manipulation - really helpful for cervical tightness!
PT
OT
Speech Therapy
Vision therapy
Opthomologist
Optomatrist

While I would love to understand what is going on, I admit that what can pragmatically be done is a reasonable threshold (e.g. could a neuro-opthomologist actually do something, rule out complicating factors and just affirm current direction, or possibly find something that would help with paperwork).

Other types of healthcare recommendations would be appreciated if you're so inclined to share. :-)

Hello!

How "inconsequential" were your most recent "bumps?" After an initial concussion, I had 5 instances of symptom recurrence from minor bumps/jolts to the body (like tripping and falling w/o hitting my head, etc.).

After 3 years of confusion about what was happening to me, I pursued a variety of second opinions. A leading concussion doctor (consults for the NFL, NHL, NBA, etc.) told me that when patients present symptoms as if there were having a whole new concussion (without nearly enough force to actually cause one), it's almost certainly a "migraine episode", as the symptoms can be very similar, but the pathology that triggers them is different from concussion and is triggered by sensory inputs--not stretching of the cells in the brain.

Mine are triggered by sudden movements (like falling and stopping suddenly), but a hit to the head can also be a trigger.

I don't have headache in the tradition way that you would think someone with migraine would experience headache, so I was very skeptical of this diagnosis, but migraine is a much broader disorder than people realize. It can cause pain, fatigue, and a huge variety of sensory sensitivities and disturbances with or without "headache".

When patients have vestibular (and, in turn) visual symptoms, it seems that it's common for these symptoms to linger beyond the acute phase of an episode (this is the case with me).

I am not saying this is for sure what you have, just presenting it as an option, given that you have been experiencing "concussions" from "inconsequential" events.

Reading the book "Heal your Headache" (hokey title, but actually written by a famous migraine doctor who practiced for many decades at Johns Hopkins) was what finally made me comfortable with the diagnosis. My symptoms fit so well.

If you DO, in fact, have migraine, preventative meds can help. From what I understand, they work by raising the trigger threshold so that these small bumps do not cause an episode, which, in turn, allows the rest of your symptoms to resolve.

Best of luck to you!

Thank you!

My most recent 'major' was in May '19 (5 months), from which the dizziness and vision stemmed and have never improved. Other symptoms such as headache, fatigue, cognitive from the 'milder' events (Nov '18 and Mar '19) have steadily decreased almost disapearing and seem to be impacted mostly by vision items. The headache seems to be connected to the cervical area ... are those still migraines, or other?

A couple minor bumps/events seem to be more escalating for a week or two, only.

I'll take a look at the book.

I'm finding it difficult to find physicians who can help me understand this.

Thanks for the info on vision & vestibular lingering, the book, and sharing your experience.

I can't claim to know specifically what your headaches are related to. I do know that there are people on this forum who have found relief from getting a neck problem from their initial accident sorted out. I have no experience with that.

I have also had trouble finding a good doctor. I've resulted to doing phone consults with a neurologist two states away. I hope you land on a good one.

Best of luck!

Thanks!

By the way, how DOES one find a good neurologist for a consult?....I've asked around both friends and professionals, and it seems to be challenging.

Very few neurologists are any help with concussions. They may be excellent with other issues but since they cannot objectively assess a concussion, they struggle to make sense.

A physiatrist may be helpful. Call around looking for a physiatrist who is good with concussions.

A physiatrist would be otherwise categorized as Physical Medicine and Rehabilitation. Some of the best are affiliated with Neuro Rehab Hospitals.

it may also be helpful to find a 'headache specialist', whether that person is a Neurologist or PM&R doctor. and make sure you do research on all doctors before a referral is made -> make sure you are being sent to the RIGHT doctor, and not just the first available opening!

what are your keratoconus symptoms?? how was it diagnosed??

Kerataconis causes unstable vision acuity. It can be like having an astigmatism. People with dry eyes and kerataconis can struggle with changes in visual acuity depending on the tear film in their eyes.

Just a wet blink can make a difference in visual acuity.

Kerataconis has no connection to concussion issues.

keratoconus - Google Search