Acute Chronic Headaches

I'm not a medical person at all, but just throwing some things out there.

My ex had something called Thoracic Outlet Syndrome (I think that's what it was called).  She had fainting spells and severe headaches.  Her body had a dysfunction that caused abnormal fluctuations in her vaso-dilatory responses, so one minute they might all relax and her blood pressure drops for a few seconds.  She collapses into a puddle and goes to the doctor and they find normal blood pressure and send her home.  The next day she might do the opposite; they all constrict and her blood pressure spikes causing splitting headaches, but by the time she tests the BP it's back to normal.  The only way it was diagnosed was because she was in for some outpatient surgery and it happened while she was on the monitor.

Blood pressure is a possibility, but that would be easy to diagnose and unlikely to cause vision issues.  By the time you have enough pain and vision problems from high BP, you have likely exploded your heart three times over.

I have had a couple times where I overexerted to the extreme and had splitting headaches for a couple days, but they went away.

Possible muscle spasm in one of the orbital muscles of the eye?  Very painful and would cause your eye to pull abnormally.  Even if your eye is looking straight ahead, both muscles could be pulling and distorting your eyeballs and cheek muscles.  Grandma had that problem.  She had a nerve issue where the muscles would yank on her eyeballs.  About once every two years they would have to go in and score the muscles to relax them.  I don't recall it being painful, but couldn't have been pleasant.

Have any of the doctors explored Trigeminal Neuralgia, Anesthesia Dolorosa, or Geniculate Neuralgia?  All three are diseases that cause pain in the face/head.  In fact, here is a FB site with a bunch of videos on several face/head pain diseases that my friend with TN helps with:  

Dr. Hess said:

I hope pheller is OK.  Anyone know of an update?

Still no pheller comment since 12/30.

?? 

Detached retina? Doesn't take much to make that happen. I get tension headaches and I have all my life. Bad enough I passed out once. They last about 4 to 6 days usually but I sometimes get them back to back. I Eat Tylenol like candy. It is what is is.

In reply to John Welsh :

PM him & see what’s up?

In reply to bearmtnmartin :

That ain't a tension headache, Martin.  You need to see a neurologist for migraines.  Or start with a primary care doctor, if you can find one that isn't dangerous.

Pete Gossett said:

In reply to John Welsh :

PM him & see what’s up?

Yeah, it's nearly a week later. 

Does anyone know him "in real life" that may have a phone number for him or his wife, that could reach out and see if things are OK? Re-reading the thread I think TIA.

https://www.mayoclinic.org/diseases-conditions/transient-ischemic-attack/symptoms-causes/syc-20355679

I just now sent an email to his account of record wishing the best to him and family and letting him know that we care.  

In reply to John Welsh :

Thank you!

I sent him a text - we haven’t actually met since I moved here to flagstaff but I did have his number. Will report back when I hear something. 

I've gotten bad headaches that linger from one day to the next. I went to see the doctor and it was probably a combo of changing weather, allergies, and dehydration. Also certain foods can cause headaches such as dairy products..

I shot him an email.  Any updates on him?

Thanks for caring guys, now get off my lawn! 

In all seriousness I'm doing ok. Mornings are rough. Some mornings I wake up feeling like I have a horrible hangover with a splitting headache when I get out of bed. Other mornings I'm fine. Sometimes the headache comes on later in the day, especially when I've been more active, but those may be more related to eye strain. The morning headaches are something different, though.  Definitely related to the act of going from supine to standing. 

Still have this pain under the back of my skull/top of neck occasionally. Feels like my neck needs cracked by a chiropractor. Just weird. 

Double Vision remains unchanged. The combination of the headaches and vision issues worried the Ophthalmologist enough to send me for an MRI Angio. Another appt with my PCP and they agree.  After 4 weeks of this I'm finally getting referred to a Neurologist. Took long enough, but I'll still probably have a week's wait. 

I'm seeing improvements in headaches, but still feel really worn down by 7pm. If I take an afternoon nap, I get a headache when I get out of bed. If I don't take an afternoon nap, I get a tension or eye-strain based headache by 5Pm. Wearing glasses actually makes these late-day headaches worse.

That being said, any improvement is a good thing. FMLA only lasts so long. 

In reply to pheller :

Thanks for checking in & glad to see some action from your providers!

Dunno what you have for insurance, pheller, but it sounds like it sucks.  The nurologist should have been called on day 0 of "headache and double vision."  I would call the neurologist office and say "I have a bad headache and double vision for the past x weeks.  Can I get in sooner?  Please ask the nuerologist.  Thanks."  They live for things like that.  Regardless, please keep your friends here in GRM land posted.  We worry about you.

Glad to hear it, buddy

pheller said:

Thanks for caring guys, now get off my lawn! 

In all seriousness I'm doing ok. Mornings are rough. Some mornings I wake up feeling like I have a horrible hangover with a splitting headache when I get out of bed. Other mornings I'm fine. Sometimes the headache comes on later in the day, especially when I've been more active, but those may be more related to eye strain. The morning headaches are something different, though.  Definitely related to the act of going from supine to standing. 

Still have this pain under the back of my skull/top of neck occasionally. Feels like my neck needs cracked by a chiropractor. Just weird. 

Double Vision remains unchanged. The combination of the headaches and vision issues worried the Ophthalmologist enough to send me for an MRI Angio. Another appt with my PCP and they agree.  After 4 weeks of this I'm finally getting referred to a Neurologist. Took long enough, but I'll still probably have a week's wait. 

I'm seeing improvements in headaches, but still feel really worn down by 7pm. If I take an afternoon nap, I get a headache when I get out of bed. If I don't take an afternoon nap, I get a tension or eye-strain based headache by 5Pm. Wearing glasses actually makes these late-day headaches worse.

That being said, any improvement is a good thing. FMLA only lasts so long. 

the whole I am not a doctor I am not a lawyer thing is very important here.

Seriously have you been checked for genculate neuralgia.

I'm not sure what all they were looking at with a CT scan, but hopefully an MRI Angio will reveal a bit more. Or nothing. 

MRI will show it though it can take a contract as well. Good luck with all of this.

Well the MRI Angio didn't show anything, at least according to the Ophthalmologist. 

Double Vision is improving, morning headaches when changing positions really seem helped by caffeine.  I tried a few days to go without tea in the morning and I was miserable all day. On days when I have a cup of coffee early, the rest of the day goes much better.

Apparently CSF leaks are really helped by caffeine. 

Again not medical advise. But try one a standard redbull. No idea why but I have seen hundreds of cases that it works better. Lots of talk about why it could work no real answers but many many reports of it working better then caffeine. 

MRI-Angio showed nothing of significance. 

Got the MRI with contrast yesterday, waiting on results, but here's hoping for being cancer free! 

Morning headaches still persist, but double vision is quickly fading, at least for non-moving stuff. While this may just have been an isolated "episode", I'd still like to find out why it happened in the first place. 

Headaches suck.

The Neurologist is the one to see.  Appointment next week?

Second MRI with Contrast results came back, radiology suspects CSF leak. 

Ironically enough, my referred Neurologist is the very same doc who did the lumbar puncture in the ER when I visited, and the same guy who suspected viral meningitis. Should be interesting to see what he has to say. 

So I get referred to our local neurologist, great! 

I call their office to set up an appt. 

I'm informed that because they are still working on setting up referrals from September of 2018, that I should expect a call to set up my appt in 1-2 months. 

After which, I'll probably have a 1-2 month wait time for an appt. 

Did you tell them what I told you to tell them?