Tomorrow I’ll be releasing a new site feature! I was going to bundle that and this post in to the same thing, but I figured I would put this in it’s own little weekday post.

After the break I’ll update you with my health situation, as I’ve had a whole battery of tests in August with some of the first objective results in 10 years.

If you have any questions or comments, please comment below! I read every comment and respond to most. No registration is necessary to comment, so don’t be shy.

Contents

Short Video

Video version for the video people.

Health

My health saga is a fun one.

I had a bunch of tests since my last post because of an neurologist that thought, “This all seems related”.

It appears that it is. I have positive test results indicating two things:

  • Multifocal small-fiber polyneuropathy (neuronopathic)
  • (Moderate to Severe) Autonomic neuropathy.

I will refer to these as a combination as SFN.

Having an answer is almost great (let’s avoid the ‘bittersweet’ cliché for now). Now I can mostly stop chasing my tail and accept that I’m actually screwed and there’s a near 0% chance that I could ever get better. Hope is a delicious poison, and I must admit that I’m glad that it’s gone.

Then again, not only will this not improve, it will very likely continue to get worse. No underlying cause was found, so there’s nothing to target as a preventative.

To clarify, here are the issues that I deal with due to this (effectively symptoms of the disease):

  • Low Blood Pressure (Hypotension)- unmedicated around 80/45 to 90/60 on a very good day.
  • Low Heart Rate (Bradychardia)- Resting HR < 50.
  • Orthostatic Hypotension - Going from sitting to standing, or lying down to standing, I become even more hypotensive. If I’m not careful (and I almost always am now), I will faint.
    • Post-syncopal symptoms - Even if I don’t pass out, it can trigger sweating spells, flushing, ear ringing and extreme exhaustion that can last for a few hours after.
  • Post-prandial Hypotension - After and during eating I can have the above issues.
  • Balance difficulty - It goes awry when SFN symptoms are having a party. This can be noticed by me having a slight wobble when I walk and occasionally stumbling (It feels like my knees, ankles or toes abruptly disappear for a moment). I can ride a bike mostly fine though (as long as I stay away from traffic).
  • Breathing difficulties
    • Bradypnia - I breathe slowly.
    • Potential Central Sleep Apnea - I’ve had previous sleep studies that indicated this, but my doctors at the time were only concerned with obstructive sleep apnea. All of my sleep studies indicate bradypnia, bradychardia and moderate to severe nocturnal oxygen desaturation.
    • No idea what to call it - Occasionally I feel like I’m breathing in the wrong direction. I’ll be breathing out and feel like I need to breath in or vice versa. It is an unsettling feeling and usually is accompanied by an adrenaline rush.
  • Gastroparesis - Luckily this is mild currently. Chronic nausea and abdominal pain in particular.
  • Laryngopharyngeal reflux disease - After eating (and sometimes drinking non-water beverages [I don’t drink alcohol]), I cough up food, cough and my voice is raspy/gargly often. If you watch my youtube videos then you’ve heard this in action (where it sounds like I need to clear my throat, but I can’t).
    • I also have an upper endoscopy that’s positive for Barett’s Esophagus due to the LPRD.
    • This is likely co-morbid with Gastroparesis.
  • Cluster Headaches - One of the most painful conditions a human can experience. I started getting them 2 months ago. This is generally thought to be autonomic in origin, and many people with autonomic neuropathies develop them. I have began a very new medication to treat this, and it has been going well.
    • Note - these headaches have no aura or warning. They happen within seconds for me. From doing alright to sudden excruciating pain in less than a minute.
  • Migraine with Aura and Silent Migraines - If I do something stupid that causes drastic changes in blood pressure, I almost invariably develop migraine auras a few hours later. About 50% of the time when I get an aura, I experience no pain.
    • I always get the same auras, and strangely both my wife and mother can tell if I’m going to have it before I can tell.
      • Peripheral flashing - This is usually the first thing that I personally notice. I see flashes in my peripheral vision, like someone is 50°-60° to my side taking a low-power flash photograph.
      • Drooping left eyelid - I think this is how other people can tell. My left eyelid becomes noticeably droopy. During bad migraines I often can’t open my left eyelid at all.
      • Mild Paralysis - My wife has said that my face ‘looks crooked’ when I get bad auras. I had an aura during a neurologist appointment and he noted mild facial paralysis. I can’t seem to notice this when it happens, even looking at myself in the mirror.
      • Anomic Aphasia - I begin to have trouble remembering words, and sometimes start making bits of word salad, using words that are slightly orthogonal to the word I want to use. I also think this is a symptom other people notice before me. It comes on slowly and there must be something unusual about the way I speak when an aura starts that I don’t notice.
      • Heightened sensitivity to light (photophobia) - Most people have experienced this in some form. I have some dark wrap-around sunglasses that help a lot.
      • Scintillating scotoma - the jaggies, the wormies. Whatever you wanna call them.
      • Heightened hearing (hyperacusis) - I think most people have experienced this in some form in their life. Suddenly it feels like everything has gone quiet and every tiny sound is a cannon going off.
      • Auditory Hallucinations - I begin to hear people that aren’t there. Always in the periphery. Auditory hallucinations scared me in the past, but now I can brush it off somewhat.
        • I strongly believe that this is the hyperacusis in action. It’s also fairly rare. I only experience this a few times a year with the worst auras.
  • Pain (dysesthesias) - Lots. of. pain. Randomly across my body I experience intense shooting pains, the feeling of hot oil on my skin, sharp pin pricks. Less often I experience tenderness to even the mildest touch, such as my shirt. The feeling of my sleeve may begin to feel like someone is firmly pressing on a bruise. It’s totally random as far as I can tell, and happens all day long.
    • I was diagnosed with Fibromyalgia due to this. I did not believe that I have Fibro, and I believe the positive SFN diagnosis shows that I do not.
  • Strange sensations (paresthesias) - ALL DAY LONG I deal with this, and I have been convinced until yesterday that this was somehow a psychiatric problem. Yay, I’m not crazy!
    • The two big things are feeling like someone is blowing on me (concentrated sensation of air blowing in a small area), or like a bug is crawling on me that I can’t get rid of.
  • Loss of sensation - The second most annoying part of all this. Sometimes I lose feeling in my hands, or just fingers. Sometimes it’s numbness and sometimes it’s a weird sensation that I can only describe as ‘velvet touch’. I can type in small batches and speech to text fills the void for me, but musical instruments are out of the question until it subsides. This has been becoming worse over the last 6 months. My bout of RSI that caused me to start using Speech to Text appears to have been not been RSI, but the polyneuropathy in action. The symptoms are very similar, but at the time I was willing to accept that I had Fibromyalgia and that the hand issues were somehow unrelated despite presenting similar sensations.
  • Burning Mouth Syndrome - Of everything listed, this is the most annoying. Nearly every day my tongue, sometimes cheeks and sometimes roof of my mouth feels like I slammed some hot pizza sauce straight from the oven into my mouth. Remember that time you burned your mouth on a hot pizza? You now get to feel that in your entire mouth, and for the rest of your life. Yes, I am bitter about it. (This has been occurring for about 2 years).
  • Panic Disorder - I do not think that I have classic panic disorder. I do not have any of the mental aspect of it, and I remain lucid during ‘attacks’. I believe that I experience what amounts to “Autonomic Attacks”. The breathing difficulty I mentioned earlier often triggers it. The postprandial hypotension triggers it. Certain parasthesias cause it. It does culminate in a panic attack, however there are clear autonomic triggers. I can also trigger it by eating a mild allergen.
    • I regularly see a psychologist, and have done extensive neuropsychological and psychological testing. He also does not believe I have panic disorder, but is unsure of what to classify it as.

I may not have pure autonomic failure as previously diagnosed, or it may be a result of the autonomic neuropathy (as PAF itself is an autonomic neuropathy). I do have all of the symptoms, and my progression has indicated degenerative nature. I have the necessary positive tests and symptoms, so it would be logical to give that diagnosis.

Now you have some of the information I left out the last 2 times I discussed this, and we have an “answer”.

The answer sucks though. Despite dealing with this for years (in increasing intensity and frequency), I always thought maybe there was a chance for me to be fixed up nice and tidy. The other side of the coin is that I couldn’t handle fuzzy diagnoses like Fibromyalgia and Pure Autonomic Failure, which are exclusionary diagnoses. Now I have positive test results. Test results that indicate a moderate to severe form of a disease that explains nearly everything I’ve been experiencing. I have images of the missing nerves, and a map of the progression and spread. I have charts showing my autonomic response. They made my heart stop a couple times for funsies. I know what’s actually happening now.

I don’t know what to feel. I don’t know how I feel.

Yesterday I was profoundly sad for most of the day. I cheered up playing some co-op Gears of War 4 with my brother.

Today I feel somewhat numb to it. I can’t help but feel like I shouldn’t be upset. It’s not glioblastoma or some crazy Amoeba. I am at high risk for stroke and brain damage from physical injury, but I’m not dying. It’s not terminal. I can count my lucky stars, I think?

It won’t stop me from doing the things I enjoy. It won’t stop me from waking up in the morning and getting work done. It won’t stop me from being efficient.

But I guess it’s just going to suck.

I’ll work around it.

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If you have any questions or comments, please comment below! I read every comment and respond to most. No registration is necessary to comment, so don’t be shy.