Zebra or hard-to-see diagnoses: Headache+

[Anonymous]

Anonymous wrote:

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?

A PP suggested Ehlers Danlos. Hypermobility is a symptom.

[Anonymous]

Anonymous wrote:

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?

To be clear, the headaches were caused by the Haller Cells. The cysts were causing new and different pain, but were what allowed the surgery to be covered by insurance. Correcting Haller Cells is generally experimental and wouldn't be covered by insurance on its own. The part of the surgery that corrected the Haller Cells also ran the risk of potentially causing blindness, due to being very close to the optic nerve. But I'm still very glad I had it done.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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?

A PP suggested Ehlers Danlos. Hypermobility is a symptom.

I’m PP that suggested EDS. My kid has it. She has never dislocated a joint or done a split ( to my knowledge). EDS comes with a lot of weird symptoms and is not well understood or treated by physicians. We never thought of my kid as hyper mobile, but they got a really high score on the beighton test. We found it because she was diagnosed with a comorbid condition. There is a strange troll on DCUM, that basically denies that EDS is thing so hopefully we don’t lure her out of hiding. EDS is a real and diagnosed disease. I recommend you do some reading on it. I’m very sorry that your son is in so much pain.

[Anonymous]

Take him to be evaluated by a rheumatologist.

I am older (50) and have some of the same symptoms - headaches, cold fingers/toes, wrists and ankles pains. I don’t have a diagnosis and my bloodwork is fine, but based on these and a few other things, a rheumatologist said that it’s likely there will be some developments in a few years.

[Anonymous]

Anonymous wrote:

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?

It’s a money grab. I heard that nonsense and more. Tried pt, acupuncture, cupping, tens, and the migraine gadgets and none worked.

[Anonymous]

Anonymous wrote:Take him to be evaluated by a rheumatologist.

I am older (50) and have some of the same symptoms - headaches, cold fingers/toes, wrists and ankles pains. I don’t have a diagnosis and my bloodwork is fine, but based on these and a few other things, a rheumatologist said that it’s likely there will be some developments in a few years.

Thanks. I come from an arthritis kind of family, so, maybe the issue is some kind of arthritis. I’ll try to persuade my son to try a rheumatologist.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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?

It’s a money grab. I heard that nonsense and more. Tried pt, acupuncture, cupping, tens, and the migraine gadgets and none worked.

You could be right about the money grab part.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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?

A PP suggested Ehlers Danlos. Hypermobility is a symptom.

I’m PP that suggested EDS. My kid has it. She has never dislocated a joint or done a split ( to my knowledge). EDS comes with a lot of weird symptoms and is not well understood or treated by physicians. We never thought of my kid as hyper mobile, but they got a really high score on the beighton test. We found it because she was diagnosed with a comorbid condition. There is a strange troll on DCUM, that basically denies that EDS is thing so hopefully we don’t lure her out of hiding. EDS is a real and diagnosed disease. I recommend you do some reading on it. I’m very sorry that your son is in so much pain.

Thanks. I understand that a lot of doctors are skeptical about a lot of chronic pain type conditions. But, on the other hand, given that some of his symptoms are observable (example: his fingers are obviously icy to the touch), maybe he’s the lucky kid who will have observable EDS.

[Anonymous]

Has he had his vision checked recently? Not just a quickie exam at a PCP, but with an optometrist or ophthalmologist?

Headaches and vertigo were my first signs of deteriorating vision, long before I noticed that I couldn't read billboards. And photophobia could be a result of eyes straining. Don't think the others would connect, but there could be a couple of things going on.

[Anonymous]

Anonymous wrote:Has he had his vision checked recently? Not just a quickie exam at a PCP, but with an optometrist or ophthalmologist?

Headaches and vertigo were my first signs of deteriorating vision, long before I noticed that I couldn't read billboards. And photophobia could be a result of eyes straining. Don't think the others would connect, but there could be a couple of things going on.

Different poster. +1 Can’t hurt for you to get an evaluation by a neuro ophthalmologist, since you are needing to explore all avenues.

[Anonymous]

i had the two-sided headaches with occasional vertigo. Weird vision stuff too and even occasional hearing issues.

They were definitely vestibular migraines. I started Botox and it was life changing. I went about every 3 months for 5 years. I never tracked my appointments because like clockwork at 3 months my symptoms started to come back and I knew it was time to go in (generally the first sensation what that I woke up feeling dizzy).

I say this in the past tense because for me it was a part of the hormone shift of early perimenopause. I got migraines bad as a teenager and now this all happened around ages 42-48. Now I'm 49 and the migraines and other symptoms have gone away.