Acute Chronic Headaches

I wouldn't normally post this on a car related forum, but I'm at a loss on what's going on in my head, and the health system, with referrals and what not is pretty slow. Maybe others have experienced something similar. 

Disclaimer: I've seen a Doctor about this issue 5 times in the last 3 weeks. 

On Sunday, December 9th, I went for a bike ride. It was intense, but I've done worse. I got a headache towards the end of the ride, popped some pills, drove home, and went to bed at 7PM. 

I've always had problems with headaches from intense exercise. My mom remembers me as a kid struggling with them. 

I woke up the next day with a headache, saw my PCP who believed I was having a persistent migraine as a result of a exertion headache. She gave me some injections that were supposed to clear it up, as well as medications. They didn't do much of anything. 

Wednesday rolls around, I'm still pretty debilitated by this headache, which gets worse when I'm standing. I have no appetite, and when I do eat I get nauseous and throw up. Pretty bad neck pain too, but no loss of flexibility. I go to an Urgent Care. That Doctor suspects a really bad sinus infection, although I have no symptoms of a sinus infection (stuffy, runny nose, congestion, etc, none of it). He prescribes antibiotics and steroids. 

I see some relief by Saturday, but headaches are now positional - gone when I'm laying down, intense when standing. I also can't see straight, and my hearing has gone tubular. Neck pain isn't quite as bad, but still present. 

Sunday, I go to the ER. They do a CT scan looking for hemorrhage or signs of stroke. Normal. They do a Lumbar Puncture/Cerebral Spinal Fluid (csf) test. A "few" white blood cells in the CSF. They suspect I'm recovering from a bought of viral meningitis. I stay in the hospital overnight to make sure I don't have bacterial meningitis, the load me up with IV antibiotics and run 3 bags of fluid into me. They test my CSF and Blood for everything under the sun, all comes back negative. Discharged at 11AM Monday. 

Here I am, nearly two weeks later, with double vision that the optometrists described as "way off" and "severe", Infectious Disease Dept at local hospital telling me my blood work and spinal fluid tests negative for anything, and a PCP who while willing to fill out FMLA forms for me, is hesitant to refer me to a neurologist or cardiologist. 

Everyone keeps telling me "if it gets worse go to the ER" but when I say "well, what if it doesn't get better?" They typically reply "well you just need more rest then, be patient." Well after 3 weeks of being off work because I can't see straight and waking up in the morning is rushing to get painkillers to kick in, I'm getting a little impatient. Some days I'm practically normal (aside from double vision) and other days, like today, it's like I've gone back two weeks. This is challenging because working like this is near impossible. 

Thus far, I'm thinking "spontaneous CSF leak", some sort of mini-stroke, blood clot surrounding my optic nerve, or acute onset postural orthostatic tachycardia syndrome. Or some sort of small hidden brain tumor. 

Anyone else suffer from chronic headaches that kind of "appeared from no-where?" Any advice on how to navigate the health system so that I can get answers more quickly without continuously going back to the ER? 

My only experience with this was my mother in law having a similar sequence of events (aggressive exercise/playing with grand kids) headache. More headache. Vomiting/balance/confusion. Ambulance. Abnormal vascular growth between the hemispheres of her brain that had started bleeding. They went and got it and four years later her only remaining symptom is loss of hearing in one ear. 

I'd try to get someone to take better pictures of my head if I were you. 

In reply to pheller :

I know this is grossly over-simplifying stuff, but any chance you are dehydrated?

Most people don’t even know when they are, and it can easily cause those symptoms (especially under those conditions). 

Dehydration wouldn't cause double vision for two weeks, especially when I'm drinking 2l of water a day. When I was in the hospital they looked at those indicators and even though I was a little dehydrated at the time, it wasn't anything too serious. 

Tell your pcp to refer you to a neurologist or a cardiologist, because your pcp doesn’t have any clue. 

Or go to a different pcp. 

And really, upon further reflection, you need a neuro pretty immediately. How many scans of your head have they done? This sounds like a meningeal tumor or other growth in/around your brain. 

In reply to mtn :

Sounds exactly what my symptoms were when my acquired chiari malformation showed itself.  Felt like headaches from a horrible sinus infection that would not go away.  Got worse when blood pressure went up or when getting up/bending over.  

You need a neurologist. Plus maybe ENT.

Are you diabetic? Too much insulin combined with too much exercise could put you into hypoglycemia. 

Maybe you need to see an endocrinologist. 

The only experience I've had that had some of your symptoms but not all was carbon monoxide poisoning.  It was from running a concrete saw cutting windows out in a basement. 

Severe excruciating headaches if I was standing upright and the only way to get any relief was to lay down. It was completely debilitating. Had some double vision as well. 

But I was pretty much back to normal after 24 hrs. 

Hope you can get a doctor to take this seriously as it certainly sounds like a serious situation. 

Feel better soon.

You need to see a neurologist ASAP.  Double vision?  Man, you need a new PCP too.  But first a neurologist.  And probably a MRI, but we'll let the neurologist deal with that.

I’d definitely want to see a neurologist. You’ve stumped enough doctors that either it’s not common or more serious than what they normally see. Either way a specialist is well warranted at this point.

FieroReinke said:

In reply to mtn :

Sounds exactly what my symptoms were when my acquired chiari malformation showed itself.  Felt like headaches from a horrible sinus infection that would not go away.  Got worse when blood pressure went up or when getting up/bending over.  

Yikes. Sounds like my situation. Did you have any issues with vision or hearing? 

OK, this is going to sound strange and I'm not trying to be funny, but doing some research on the health benefits of orgasms (too graphic a story for here) I found out that when you have a migraine or other big headace, they recommend having a orgasm before you reach for an aspirin.

In reply to carguy123 :

I’m asking my doctor for a note to take to work.

Then there's the migraines brought on by orgasms. 

Any update here, pheller?  I'm serious, neurologist should have been seen at the onset of the double vision at least.  Man, the medical incompetence we have seen reported here on the board here lately is shocking.  Do all you guys have these problems?  

Google “cluster headaches” aka suicide headaches. I suffered from these a couple of times years ago and sounds similar to yours. My doctor was able to give me some meds that helped but I don’t recall the name. 

Edit: after rereading your post, maybe not so similar to your symptoms

Dr. Hess said:

Then there's the migraines brought on by orgasms. 

Any update here, pheller?  I'm serious, neurologist should have been seen at the onset of the double vision at least.  Man, the medical incompetence we have seen reported here on the board here lately is shocking.  Do all you guys have these problems?  

For minor stuff, yes. My wife had a C-Section. Anesthesiologist didn't give her anything for the pain immediately following. When they asked what pain meds my wife wanted, she said "anything but Hydrocodone" (Norco/Vicodin), which they interpreted as anything but narcotics. Pain management was horrible, with one nurse in particular being very... annoying. I finally snapped and yelled at the nurse that she needed morphine, or oxycodone. They came in and gave her some hydromorphone, but it was about 3 hours too late. Oh, then they missed one of her doses after they got her on whatever she was on (the dilauded was just a bolus). Overall, very poor pain management at the hands of the OB team for my wife. And she was vocal and clear, it wasn't like she was hiding anything. 

For more serious stuff, in hindsight, we may have. Story below: 

Not many would realize this even in hindsight, but I grew up in a house with a Big Pharma middle-manager and an RN as parents, my wife grew up in a house with an OR RN, and my wife is an RD in a Dialysis center, with experience with diabetes, heart/lung/liver/kidney transplants, burn unit, etc. We know more than the average bear about this stuff.

I think most of you know the backstory about my daughter. We think it was a virus that attacked her heart. Without searching for the most elusive zebras, a virus is the only thing that could have attacked that quickly, and left that quickly (her left ventricle was recovered to the point that we were ready to take her off of the ECMO when the hemorrhage occurred). So this was something that probably would have NEVER been detected in our daughter in utero, But could it have been detected in my wife? Well, maybe. Part of the problem is that myocarditis symptoms can be almost identical to pregnancy symptoms. Edema, shortness of breath, etc. 

Here is where it gets interesting, and you have to actually know this to know--my wife's blood pressure was low. Not dangerously low, but low enough that it was commented on how great her BP was for a 8.5 month pregnant woman who was not eating well and was working full time. So, she had low blood pressure. She was peeing like crazy during the night (but not the day). She had shortness of breath. She had edema, but the edema was gone every morning. And for the most part this all started about 1-2 weeks before our daughters birth. She had some of the symptoms, but not as severe as this. And, about a week before our daughters birth, there was one day that she could not get out of bed. Too damn tired. Didn't feel good. She had contacted the OB, none of them were worried. If  you add it all up, if she'd had high blood pressure we wouldn't think twice about it. But the low BP combined with the other symptoms make us think that the virus also attacked her heart, and we (and the medical team) just wrote it off as pregnant. 

In reply to mtn :

That is a tough one, mtn, in many ways.  The symptoms she had fit in with "preggers,"  Especially late preggers.  Some type of viral infection does make sense in hind-sight.  Unfortunately, there is very little that can be done there, or even detected, besides maybe a CBC and looking at the white cell types.  Even then, that can just get you to "virus."  The number of unknown virii is, well, "unknown."  I would say "many, many."  Look at the current virus going around giving children Polio like symptoms.  And it's not Polio.  Just some virus out there that is unknown.  It is also most likely that Type 1 diabetes is instigated by some virus.  Don't know which one.  Could be a common one like one of the "cold" virii, or influenza or some other unknown one. Ask any Type 1 diabetic and they will tell you of the time they "caught" diabetes, if they were old enough to remember.

Pain management today is a whole other problem.  With the feds pushing doctors, doctors are afraid to give any narcotic to anyone.  When there's a fed looking at you waiting to second guess your move and butt berkeley you, you have to do that for your own protection.  Now, post C-section on an in-patient basis, well, pain meds should have been addressed.  And I won't get into the problems with nursing. 

Also, it's not the anesthesiologist's responsibility to give post-operative pain management drugs.  Their responsibility pretty much ends at the OR.  Maybe the post-op recovery room, but in OB cases, even that can be structured differently.

Dr. Hess said:

In reply to mtn :

That is a tough one, mtn, in many ways.  The symptoms she had fit in with "preggers,"  Especially late preggers.  Some type of viral infection does make sense in hind-sight.  Unfortunately, there is very little that can be done there, or even detected, besides maybe a CBC and looking at the white cell types.  Even then, that can just get you to "virus."  The number of unknown virii is, well, "unknown."  I would say "many, many."  Look at the current virus going around giving children Polio like symptoms.  And it's not Polio.  Just some virus out there that is unknown.  It is also most likely that Type 1 diabetes is instigated by some virus.  Don't know which one.  Could be a common one like one of the "cold" virii, or influenza or some other unknown one. Ask any Type 1 diabetic and they will tell you of the time they "caught" diabetes, if they were old enough to remember.

Pain management today is a whole other problem.  With the feds pushing doctors, doctors are afraid to give any narcotic to anyone.  When there's a fed looking at you waiting to second guess your move and butt berkeley you, you have to do that for your own protection.  Now, post C-section on an in-patient basis, well, pain meds should have been addressed.  And I won't get into the problems with nursing. 

Also, it's not the anesthesiologist's responsibility to give post-operative pain management drugs.  Their responsibility pretty much ends at the OR.  Maybe the post-op recovery room, but in OB cases, even that can be structured differently.

Yeah--like I said, the low BP was the only thing that should have triggered a "hey, maybe there is something off here", but this may be one of the few cases where it really was a Zebra pulling the cart. Certainly no malpractice. There probably was (edit: removed malpractice) poor care and potential legal issues stemming from my wife working at the hospital that she got her care at during the first trimester, but that was just over hyperemisis (sp?). 

Aren't the anesthesiologists supposed to, or able to give a pain management drug immediately after surgery? They had a name for it that I hadn't  heard before. My wife and her mom (OR nurse) were upset that he didn't. 

In any case, our issues were really with the nurses--actually, just one of them. 

FWIW, We were thrilled with our daughters care. Obviously it didn't end up the way anyone would have wanted, but she had the best care in the world and her docs, nurses, respitory techs/therapists, pharmacists, RD's, etc. were all wonderful. Peds is truly a different world. 

The surgeon, or in this case, the obstetrician,  is the one that writes the orders for post operative care, including pain management, which starts after leaving the recovery room.  The recovery room is the anesthesiologist's domain. I don't know what they are doing for pain management in the OB recovery room, if there is one.  At my school, after delivering in one of the rooms set up specifically for complicated deliveries/C-sections, they just move them back to their room in the OB section.  It wasn't like the full surgical OR.  Anyway, if she biatched enough, they would get her something, and her telling them "no this stuff..." further complicated things.

There's always one nurse....

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

Ive had headaches lasting for awhile but not double vision. Mine a lot of times are brought on by changing weather too among other small triggers.

Brain scan,  MRI.    You could have had a stroke and not know it.    I did

Only times I had severe headaches were my post-concussion syndrome after a motorcycle wreck at the track. Debilitating doesn't come close, I'm glad I didn't own a gun at the time as I may have used it to get it stop. 

At one point I was taking 3000mgs of Ibuprofen and a dose Amiltriptylene per day, until they finally subsided.

Had some odd chronic headaches when I got in shape after a few years of being a lazy happy person. Turned out my gung-ho extra hydration was flushing out certain electrolytes. Supping magnesium seemed to help the most, but salt, potassium also. The headaches were often accompanied by leg tremors or muscle cramps in my case, and exertion induced a lot. At least one crossed into 'visual migraine' territory, where vision was very much affected. My doc was mostly unhelpful, and assumed it was my previously occasional migraines, despite my insistance the sensation did not match. Just a stab in the dark, but maybe helpful to someone reading. I am not a doctor, none of this is medical advice, I am just a stranger on the internet (to most of you).