[NMCycling] medical issue

[Hawke Morgan]

Hi y'all,

I have been dealing with an unknown illness off and on for at least the last year or so.  Possibly I have had this for years, and am just now looking at similar periods of illness with similar symptoms.  I call it mysteryitis. If you feel like wading through this, and passing on any ideas, I would appreciate it.  I am kind of picking the community's collective brain, as some of you are medical, and most of you have been racing a while and have had lots of issues over the years.  I am not dying, but I hope that I do not have to live the rest of my life dealing with these symptoms. 

There are two primary symptoms to mysteryitis: 

1. A constant pressure feeling in my head, very variable but never really going away, sometimes painful, sometimes more like just pressure.  It feels like it is behind my forehead just behind and a little above my eyebrows, like I had a balloon in my head. When the pressure is severe it makes it difficult to focus, and can make me dizzy, light headed, brain foggy, and/or have trouble concentrating.  I have also been experiencing memory loss, forgetting things more than usual.  It feels (I think) like sinus pressure.  I can stretch my jaw and neck and feel the little passages trying to equalize right in the pressure/pain area. This does not alleviate the pressure though. Sometimes the pressure is worse if I bend over or if I exercise, particularly as my heart rate goes up.  The pressure often becomes more of a headache during and post exercise. 

2. A symptom something like an abnormal sleep inertia.  I call it “slow state.”  When it is mild, it just seems like drowsiness, sometimes coming on during the day if I am doing something inactive.  It seems to be related to heart rate a little, as there have been times I was having fairly bad symptoms, where I could get better by getting up and taking a little walk.  I have not actually fallen asleep working or driving, but I get very drowsy.  It comes day and night but the most severe symptoms I have had have been at night when I am getting tired.  As it becomes more severe I can go into a drunken-like or dream-like state, with difficulty concentrating/remembering, confusion, dizziness, weakness, difficulty with motor skills, mild difficulty with speaking, difficulty comprehending what others are saying, and sometimes vulnerability to depression.  Like being drunk, I can't just snap out of it.  If I nap during the day for more than about 30mins, I will often go into slow state, to some degree, and if symptoms are bar it may take me maybe 1 to 2 hours of feeling really lousy and drowsy, and at the same time trying to be active, to come out of it.  Sometimes if I go exercise it gets better, particularly if it is mild.  Sometimes a short 15 minute nap helps.  Dark chocolate helps some.  I use it as a stimulant, as I am not much of a caffeine person.  At night it is generally not practical to go out and try to exercise to try and force myself out of slow state, as I am tired anyway, and trying to exercise, even lightly, is not what my body needs.  Any little virus I get which necessitates resting really makes the slow state worse, as I get pushed into the slow state by resting, and I cannot easily get out of it.  There have been times where I felt as if I were coming down with a low level level virus, and then I get out and go for a bike ride and feel pretty much normal.  It is like it makes it really difficult to “feel” my physical state.  If I try to ride, and after 30 minutes I do not warm up and start feeling better, then I can conclude that I the mysteryitis is in a flare up, or that I am sick.  If it is the mysteritis I probably have noticeable headache, pressure, or dizziness when trying to exercise.  Sometimes if I rest for 2 hours or more the symptoms can get a little better.  Sometimes not.  My slow state symptoms are much better at the present than they were mid August, which is the last time I was having bad slow state symptoms.     

These two seem to be tied together, sometimes the head pressure/headache seems to causes the slow state, or the slow state seems to causes head pressure/headache. 

It seems like the symptoms kind of come in waves, better for a few weeks and worse for a few weeks. When it has gotten bad I have had several weeks where I mostly just laid around, ran some errands for the family, and did some paperwork. 

These are the medical paths I have been down looking for some solution:

A course of antibiotics. (Initially thinking I had sinusitis)
A course of antibiotics with steroids. (still thinking I had sinusitis)
A sinus exam.  (still thinking I had sinusitis) 
A sinus ct scan.  (still thinking I had sinusitis)
A brain CT scan.
Lots of blood work, nothing abnormal.
2 normal EKGs. 
I have checked my blood sugar some, and it seems normal. 
Weight is fairly stable. 
No fever. 
No body aches, aside from ones caused by inactivity, or stress injuries.
Not much pain of any sort, aside from the headaches, and some tendinitis.
No stomach issues, nausea.
It is rare that I have classic allergy issues like sneezing or itching, a little congestion sometimes, but not bad, less than I observe in others around me.  I have not observed a direct correlation between congestion and the severity of the head issues.  This is something I should observe more carefully perhaps. 
I have been in bed resting about 7.5 hours a night, with 6 to 6.5 hrs actually asleep. I do not have insomnia generally.  I would like to see this be a little more, but I wake up and can't get back to sleep.  (Recently maybe sleeping a little more)
I did an in-home sleep study.  They said I have just borderline sleep apnea. I do not think this is bad enough to cause all of this. 
I have been exercising, even hard sometimes, racing occasionally, when I feel up to it, but definitely less than a year ago. 

Initially this spring, and some last summer, I tried resting my way out of this condition, as if it were a virus.  This did not seem to work very well, in that once I rest, the slow state kicks in and makes it hard to get up, and I feel like resting more.  So now I am trying my “shark strategy,” in which I act like a shark, that cannot breathe if it stops swimming.  I try to keep moving even if I don't feel like it.  Some days is is not so hard.  I am naturally active.  If I have to do office work I sometimes take a break and do something more active like cleaning or yard work, to fight off drowsiness, then go back to the office work.   I take chocolate as a stimulant.  By the night I am pretty much tired out, and I see to it that I stop by any serious work by 10PM at the latest.  I try to take one day a week in which I let myself rest even if it makes me feel lousy and drowsy, which it generally does.  It seems like just letting myself think I am resting on a given day can push me into slow state and makes me really tired all day.  I have been on the “shark strategy” for about 4 months and it seems to be working better than anything else I have tried.  I have been pretty functional (though sometimes struggling) with my one rest day per week.  The strategy seems to help with the slow state quite a bit, but the pressure and headaches are ongoing. 

In the future I would like to try:
Talking to an neurologist and try to get them to order a brain MRI. 
Trying to get very consistent with using my nasal rinse machine to see if that helps. I feel like it is either sinus related, or related to some brain issue putting pressure on the sinuses. 

Today is pretty typical.  I went for a little MTB bike ride for about 30 mins.  (I was tight for time) I felt soso, got my heart rate up a little, then I started having a headache and not feeling as energetic so I just rode around at a moderate speed.  Post ride the pressure and headache considerably more than normal.  Not feeling congested.  Fortunately I was not feeling dizzy, my balance descending felt fine.  Maybe a 6 or a 7 not debilitating but not very nice either.  Headache continued maybe 90 mins after ride.  Took an ibuprofen, which I do sometimes for headaches.  It seems to help.   

Thank you for reading, and let me know if anything rings a bell.


Hawke Morgan
Morgan Roundabouts LLC
(505) 259-6885
yourstruly at fastmail.com

Hawke Morgan
Morgan Roundabouts LLC
(505) 259-6885
yourstruly at fastmail.com