Zebra or hard-to-see diagnoses: Headache+

[Anonymous]

This is for a college-age man doing fine in school and who seems healthy, happy and athletic aside from these symptoms.

This is for someone with good private insurance who’s seen neurologists, headache specialists and physical therapists and doesn’t want opioids or take anything not prescribed by a doctor.

-Always has a moderate *two-sided* headache. The headaches spikes up to very bad, but not hospitalization level, many times per day.

- A few times per year has brief vertigo spells .

- A little bit of photophobia with headaches

- Fingers and toes always cold, without the color changes associated with Raynaud’s.

- Wrist pain without carpal tunnel syndrome.

- OTC painkillers have no effect. Topamax helped for a few months.

[Anonymous]

https://www.washingtonpost.com/health/2023/11/25/unsteady-confused-incontinence-dizzy-medical-mysteries

[Anonymous]

Sadly, it's normal for many. There are lots of new migraine medications from pills to shots to infusions. Most neurologists, including headache specialists just throw drugs at you and it's all trial and error. Mine are not treatable.

[Anonymous]

i had severe bilateral headaches in my 20s and 30s that most medicine did not help in any way.

i ended up developing a cyst in a sinus that triggered pain through my tooth roots, imaging also showed a small cyst on the other side, as well as large bilateral Haller Cells. fortunately, my surgeon was open to the research I had done with Dr. Google, which indicated that Haller cells can be linked with idiopathic/intractable headaches. surgeon removed all cysts, the Haller cells, addressed my deviated septum, and reduced my turbinates. I now get headaches maybe once every other month, rather than every few days or even for weeks on end. I haven't bought migraine meds (imitrex, zomig) since.

[Anonymous]

Vestibular Migraines perhaps, or Meniere's

[Anonymous]

Assuming he had MRI? Seems like a miscellaneous collection of symptoms that aren’t related. But since you brought them up, there’s an outside chance it could be Ehlers Danlos. If he didn’t have a MRI, I might have other thoughts (that would be diagnosed via MRI).

[Anonymous]

Have you seen a neuro optomologist? Has he ever had a concussion?

[Anonymous]

Has he been tested for Lyme or seen a Lyme specialist? Chronic headaches as well as cold hands & feet are common.

[Anonymous]

Botox

[Anonymous]

Anonymous wrote:Sadly, it's normal for many. There are lots of new migraine medications from pills to shots to infusions. Most neurologists, including headache specialists just throw drugs at you and it's all trial and error. Mine are not treatable.

Thank you. I’m sorry.

[Anonymous]

Anonymous wrote:Has he been tested for Lyme or seen a Lyme specialist? Chronic headaches as well as cold hands & feet are common.

Tested negative for Lyme, but he hasn’t seen a Lyme specialist and we have gone camping a lot. Will look into this.

[Anonymous]

Anonymous wrote:Botox

Thanks. Have you really done this yourself? How well did it work?

[Anonymous]

Anonymous wrote:i had severe bilateral headaches in my 20s and 30s that most medicine did not help in any way.

i ended up developing a cyst in a sinus that triggered pain through my tooth roots, imaging also showed a small cyst on the other side, as well as large bilateral Haller Cells. fortunately, my surgeon was open to the research I had done with Dr. Google, which indicated that Haller cells can be linked with idiopathic/intractable headaches. surgeon removed all cysts, the Haller cells, addressed my deviated septum, and reduced my turbinates. I now get headaches maybe once every other month, rather than every few days or even for weeks on end. I haven't bought migraine meds (imitrex, zomig) since.

Thanks. Will ask about this. The MRIs didn’t show cysts yet, but maybe they could miss a small cyst?

[Anonymous]

Anonymous wrote:Vestibular Migraines perhaps, or Meniere's

Thanks.

[Anonymous]

Anonymous wrote:Assuming he had MRI? Seems like a miscellaneous collection of symptoms that aren’t related. But since you brought them up, there’s an outside chance it could be Ehlers Danlos. If he didn’t have a MRI, I might have other thoughts (that would be diagnosed via MRI).

He had an MRI and an MRA. One physical therapist said the wrist pain could be due to joint hypermobility.

To me, that seems bizarre, because no one one either side has ever dislocated a joint or can do a good split, but maybe there’s something related that affects connective tissue without making people super flexible?