Last Updated - 2021 August 22
What is this
I will discuss the issues that I face in my daily life. I will be covering medications that I’ve tried and their effects. I’ll be covering lifestyle changes that’ve helped.
Everything listed here has been diagnosed in isolation by at least 2 conventional medical professionals.
Like most people, there are some maladies that I believe I have or have had at some point. I only value self-diagnosis as a pathway to communicating with a trained professional. I have not listed anything here which is self-diagnosed or speculative.
This page is always a work in progress. The initial publishing is missing a number of medications, mitigations, impacts and contains a wee bit too much stream of consciousness.
If you are finding this article and are suffering from similar symptoms, please see your doctor. LISTEN to your doctor.
If you’re under a doctor’s care and are desperately looking for things that help you, please remember that this is my experience. The causes is currently unknown for my current health state, but the effects of the disease are readily testable. My unknown cause may differ from yours. My body is not yours. What works for me, may not work for you.
These are my experiences, and my experiences alone.
Listen to your medical health professionals.
- What is this
- Progressive Neuropathy
- Cluster Headaches
- Panic Disorder
- Obsessive Compulsive Disorder
I’ve had 3 positive tests for:
- Small Fiber Neuropathy - Skin punch biopsy, severe disease in tested areas
- Autonomic Neuropathy - QSART, mild disease indicated. Tilt-table positive without isoprenaline.
- Large Fiber Neuropathy (no good links online) - NCS/EMG, 50% loss in amplitude, 15%-25% reduction in conduction velocity.
3 Years ago I had NCS/EMG which was not indicative of large fiber neuropathy, a few weeks ago it was indicative of moderate/severe disease depending on the specific nerve.
Autonomic tests have also indicated progressive disease.
I woke up one night to use the restroom, did so successfully, came back to the bedroom and passed out flat on my face.
My brother and father came over (at 2am) to discuss with me and my wife if I should go to the hospital, and it was decided that I should. Upon arriving they appeared to be convinced that I was drunk (disheveled, slurring) and my care was delayed. Eventually I made it into triage and after some chatting I was rushed for a CT.
I vividly remember lying on a gurney in the hallway and the nurse wanted to check my BP lying down then standing. My mother suggested they get a strong male nurse to stand nearby. BP was mildly low lying down. I stood up and… Next thing I remember I was at a BeeGees concert.
Oh, wait. I passed out, but you could not convince me that I was not at a BeeGees concert for that minute I was out. I remember it vividly to this day. Thankfully that nurse was there, as I was told that I ragdolled straight to the ground as I said “I’m going…”
Cue doctors galore trying to figure out why my HR/BP were low, and why I suddenly developed orthostatic hypotension. Tilt-Table Test was positive. Other tests were negative (did not get a QSART till a decade later!).
I passed out many times in that period. I injured myself doing so frequently.
Over the next few year the autonomic symptoms worsened slowly and I began to notice other symptoms. I couldn’t feel ‘wet’ anymore, anything wet simply felt cold. I started dropping cups of water. I would get these strange shooting pains. The ‘spiciness’ from mild hot sauce would last for hours. I had a nerve conduction study and EMG which returned inconclusive (important later!). 3 years later I had another inconclusive NCS/EMG which showed slightly worse results than previously, but not enough to make a definitive diagnosis. More and more symptoms until a skin punch nerve biopsy returned positive for severe small fiber neuropathy.
Over the last 3 years I’ve started falling when walking. Tremors in my hands near the end of every day. Muscle twitches that look like small animals furtively engaging in sporting activities under my skin. Stuttering in common motions.
A month before writing this post I had a positive Nerve Conduction Study that showed moderate large fiber neuropathy.
I’ve been tested for nearly everything other the sun.
- Heavy metals
- Diabetes/Insulin Resistence
- A host of genetic disorders
- Vitamin deficiencies
- Cancer-related causes
- Vasculitic causes
- Endocrine causes (I’ve undergone the fully battery of tests, I have hypothyroidism which is treated successfully)
All tests have come back negative thusfar.
I’ve written about symptoms before, and those have mostly remain unchanged or become more severe.
This is a list of what I experience, not necessarily all of the potential symptoms.
- Autonomic Neuropathy
- General Hypotension - 85/50 on average. 100/60 on a good day.
- Orthostatic Hypotension
- Postprandial hypotension
- Bradycardia - Resting HR in the upper 40s.
- Bradypnia - ~10 breaths per minute
- I do not know the name for this, but a few times a day I suddenly feel like I’m breathing in ‘the wrong direction’. Inhaling when I should have been exhaling or vice versa. It’s almost a choking feeling, but the corrective reaction is “Oh, I need to breathe the other way”.
- Small Fiber Neuropathy
- Vestibular Neuritis - Sudden intense bouts of vertigo. Feels like a giant grabbed me and threw me across the room, but I never hit the wall. I believe this symptom is what triggered Panic Disorder to develop, and continues to trigger sudden panic attacks.
- Burning Mouth Syndrome
- For me this is a dry sensation, like tissue paper is stuffed in my mouth, combined with a strong tingling.
- Sensation of wetness, usually on hands or arms
- Fleeting, intense burning pain
- IBS-like symptoms.
- Allodynia - Specifically cold things feel painful rather than cold.
- Fiery nerve pain - The sensation of hot oil shooting through an artery. Sometimes quick, sometimes lasting for hours. Happens seemingly randomly, including when asleep.
- Large Fiber Neuropathy
- Propioceptive dysfunction
- Sensory Ataxia
- Muscle Twitching - Looks like there’s graboids running around under my skin, or manifests as tremors.
- Foot Drop - recently led to a bad sprain which I’ve been recovering from for almost 4 months.
- Reduced Sensation
- Weakness, primarily right side
- August 2021 - I’m unsure what the symptom is called. My fingers sometimes move on their own when placed on a keyboard. I’ll have a thought of typing a word, and I’ll type a smattering of letters in that word (or letters adjacent to letters in the word). I’m unable to control it (yet?)
- I currently, and carefully, walk with a cane. It has been strongly suggested that I switch to a walker.
- I have had frequent falls. 1-5 a month.
- I will soon be wearing hinged AFO braces. I currently can play drums for approximately 10 minutes before my hands become numb and I develop tremors.
- My feet ‘stutter’. When I attempt to press a pedal there is sometimes a short lag before my foot moves. (reduced nerve conduction velocity is likely cause) I can play guitar or electric bass for about 20 minutes before my fingers become numb. Primarily on my plucking hand. Typing is difficult. I often miskey, place my hands incorrectly or do not press keys hard enough to actuate the switch.
- I can type for approximately 10-20 minutes before my fingers have lost all sensation of pressure.
- August 2021 - I’ve been able to improve this by switching to linear, non-clicky keyboard switches with rubber o-rings. I’ve done exercises to increase key accuracy so that I don’t press on the edges of the keys. I can type for about 2 hours now (!).
- I drop things frequently. I drop something that I believe I have firm hold of between 5-10 times a day.
These are a list of things that I’ve tried that have not worked, and those that have yet worked.
- Eliminating Allium - I’ve learned that foods that increase digestive motility trigger symptoms. The most common of these are alliums. Garlic and onions are the most common. Avoiding alliums is more difficult than you might imagine, onion and garlic are in more things than you might imagine, and eliminating them leads to some fairly bland experiences.
- Asafoetida is an alternative that I have not yet used.
- Eliminating Capsaicin - The tiniest amount of capsaicin triggers Burning Mouth Syndrome for me. Remember, BMS isn’t just “oh, the spicy is lasting a long time”. It’s a dry, tingling feeling across the whole mouth.
- Ketogenic Diet - There was a noted general reduction in symptoms while on a ketogenic diet.
- Maintaining a ketogenic diet has been difficult as I’m extremely allergic to dairy products (anything with casein), and I’m mildly allergic to pork and chicken. Attempting a vegan ketogenic diet was untenable.
- Sodium Increase - I am on a very high sodium diet, and it has helped normalize my blood pressure where pharmaceutical treatments have been less successful.
- Meal size reduction - Eating meals <400kcal 8-10 times a day reduced all gastro symptoms (for a short time) and appeared to reduce the severity of pain. I was unable to continue that as the medications I take appear to cause stomach discomfort after a few days if not eaten with a moderate amount of food.
- My caloric maintenance is 3,200-3,600.
- French fries - Hey, don’t laugh. I don’t know why, but heavily salted french fries reduce these symptoms for 30-90 minutes after. No other food seems to do it. I didn’t even like french fries that much until I discovered this.
NOT YET SUCCESSFUL
- Vegetarianism - No noticeable benefits. I am still currently vegetarian however.
- Copper reduction
Medications marked with an X did not work.
- Lyrica - Reduces pain somewhat, helps a lot with vestibular issues.
- Neurontin - I switch between these two medications. It seems that one will lose effectiveness and switching to the other provides a renewed relief of symptoms.
- Sectral - Manages orthostatic hypotension well.
- Synthroid (Brand name only) - Generic causes stomach issues and headaches. Has worked well for managing hypothyroidism.
- Provigil and Nuvigil - Sleeping with chronic pain is difficult. I’ve been able to both increase the quality of my sleep and increase the quality of my waking cognition with either of these medications. No single medication has improved my life more than these.
- Metaxalone - Helps mildly when muscle twitching/tremors are bad. Prevents the cramps and soreness that happens after long-term muscle twitching bouts.
- Bentyl - Seems to reduce most symptoms, with no side effects. I can not take this with CGRP medications as it complicates the side effect of constipation.
- X Celebrex - Stomach discomfort. No benefit.
- X Indometacin - No benefit.
- X Low Dose Naltrexone - Difficulty sleeping, no benefit.
- X Flexeril - No benefit. Excessive sleepiness.
- X Elavil - Pronounced sleepiness. Mild pain relief.
- X Cymbalta - No relief. Moderate increase in sweating.
- X Savella - Fervent sweating.
- X Ultram - No pain relief, increased compulsive behaviours. Abused this medication, withdrawal was hell.
- X Tylenol 3 - No benefit, anxiety.
- X Tegretol - No benefit, drowsiness.
- X Plaquenil - Taken with the thought that the neuropathy might be caused by an autoimmune condition. I took this for a year with no benefit, and no side effects.
- X Florinef - First medication tried for raising blood pressure and reducing orthostatic hypotension. Increased panic attack frequency, unsure why.
- X Proamitine - Worked well for BP, but caused intense tingling in the scalp which was compounded by other medications being taken at the time.
- Acetyl L-Carnitine - I cycled through this twice, and it has a significant effect the LFN related symptoms.
- Liquorice - increases my blood pressure and HR reliably. Difficult to use liquorice to maintain as the effect lasts an hour at most, and it’s disgusting to me.
- Water Kefir - It’s magic. Homemade water kefir has provided one of the most drastic improvements in gastric symptoms of anything I’ve tried. It is labour intensive to make and maintain, so I no longer have it in the house.
- Kevita - Kevita has been the most effective purchasable probiotic source for improving gastric symptoms. Most of them are disgusting though.
- X CoQ10 - No benefit.
- X Alpha Lipoic Acid - No observed benefit.
- X PQQ - Increase in paresthesia. I tried on/off twice and it was not a subtle effect.
- X Curcumin - Reliably increases sharp nerve pains.
- X Florastor - I’m unsure if this helped. The first time taking it I had less symptoms, but ceasing for a while and repeating a course did not have the same results.
- Hinged AFOs - I wear leg braces on each leg to walk. I have Foot Drop in both legs, and coordination issues (decreased nerve conduction velocity). These allow me to walk without constantly stumbling.
- Cane - I walk with a cane to provide a balance point for when I stumble, which happens frequently (but less severely) even with the leg braces.
- Speech to text - I use Talon for most computer interaction. My ability to type has slowly been reduced over time, Talon has been a boon to my productivity.
- Sit/Stand Desk - Recommended by Dr, paradoxically has been a great benefit. Standing while working for even a few minutes at a time reduces pain in hands. Changes in posture seem to reduce severity of muscle twitches, even in muscles that aren’t involved in the posture change.
- Calligraphy - I’ve taken up calligraphy to help practice and retain fine motor control in my hands. It has been effective thusfar, and it’s enjoyable.
- Note taking - I have switched my note taking from typing in Orgmode to physically writing in a notebook with one of my favorite pens or pencils. I retain use of my hands for much longer taking notes this way.
- It has taken conscious practice handwriting, around 30-60 minutes a day, to develop and maintain habits that do not lead to increased tension or loss of sensation.
- Resistance band training - Almost any exercise leads to muscle twitching and weakness. I’ve found that resistance bands offer me the most workout time for the least post-workout symptoms. High reps, low resistance, slow movements.
- Improving lighting - I’ve increased the amount of light in the house, and made it possible to turn on lights before I reach my destination. Fewer falls as I can see where I’m going and be conscious of my movements. Lowering lights, and specifically using green lights, helps with migraines.
- Write clojure or other lisps only - I’m a sucker for experimenting writing apps with various esoteric, weird, old or hyped programming languages. I write less, but more reusable code, with Clojure and clojure dialects than anything else. I do miss spending hours fiddling with toy logic languages or writing forth on small AVR boards, but I gotta get stuff done.
- Yes, I’m biased. No, your language isn’t inferior (unless it’s Rust or Haskell).
- Classical Technique on all instruments - I now play with a hybridized classical technique on electric guitar and (primarily) electric bass.
- Stiffer strings - When I began to notice loss of sensation and coordination in my hands, my first thought was to switch to lower tension strings. Wrong choice. Lower tension strings mean less feedback, more movement and require more coordination to play in tune. I switched to higher tension strings and it increased my playing times and decreased the associated symptoms.
- Higher tension strings require less movement for the same volume, provide more tactile feedback, bend less (play in tune despite pulling/pressing too much) and respond better to unintentional ‘flailing’-like movements.
- BlueChip Picks - These picks are simultaneously ultra-smooth gliding across the string, and easy to grip in the hand. I frequently dropped picks and have tried everything I can find. It seems that the primary issue is that the friction of rougher surfaced picks tends to ‘grab’ the pick out of my hand. I suspect that the reduction in vibration from the smooth and countoured surface allows me to play longer before numbness in my fingers settles in.
- Yes, these are expensive. No, I don’t think they are for everyone. They’re not magic, but they do have qualities that I’ve not found in any other pick: slick on the strings, grippable in the fingers.
There are some things that I can’t really “fix”, so I’ve developed some habits or changed my environment to help deal with certain issues.
- Grip cups with my pinky underneath - When I grip a cup I often let the cup sit on my extended pinky so that I have an extra level of sensation if my grip loosens.
- Take large steps.
- Run my hand along a wall, desk, etc… when I walk.
I’ve had moderate to severe Migraines with aura, and more often silent migraines since I was 14. If I was writing this post in 2017, I would lament how annoying migraines are. They are bothersome and sometimes they can be crippling. Migraines suck.
In 2018 I had my first cluster headache, or “Suicide Headache”. Then I had another one. Then another one. Then another one…
Before experiencing it, I’d been aware of the condition. I’d read medical texts, studies, blogs, etc… about migraines and frequently found discussions of cluster headaches. The stories were inconceivable. They are frequently described as one of the most painful things a human can experience.
I’ve watched and read tales of people who’d lived through catastrophic, grave and traumatic situations. These same people experience cluster headaches and described the headache as ineffably more agonizing than their prior traumatic experiences. I chalked these tales up to some sort of self-validation or gaming a disability system or hamming it up for the cameras or… whatever.
I was completely wrong, and at this point I am going to become the person that I don’t expect you to believe.
The first one
My first cluster headache was while driving over the Gandy Bridge. I felt a strange sensation run up the back up my neck, through my brain and into my eye. The sensation bloomed around my eye socket from a dull pain, as if someone was pressing their elbow into my eye, then to a warm burn, then a searing burn. The burning and pressure intensified rapidly. I felt a sensation as if the bridge was swinging and increasingly as if my vehicle was being thrown about by gusty winds. Vertigo.
I can’t say that my sense of time in that situation is accurate. It felt like the entire sequence took less than a minute. I pulled over on the bridge as fast as I could and immediately began vomiting. Time simply vanished. I do not recall having a sense of where I was or what I was doing. In restrospect, I’m terrified that I couldn’t even think of calling emergency services.
I do not know how long it lasted. As it subsided, I remember finding some eye drops that I keep in my bag because I couldn’t see well. I looked in the mirror and saw that I clearly had been crying. My left eye was drooping and I couldn’t fully open it. (This happens when I get “normal” migraines too!?).
I don’t understand how, but I drove home. I cleaned up, then had a second wave of vertigo and a fleeting, burning pain behind my eye.
More vomiting. I cleaned myself up again.
My mother came over (unexpectedly, as mothers do) and noticed my drooping left eye. I explained what happened and she insisted on taking me to the hospital, to which I foolishly did not go.
For the next 2 days I was drained. I have competed in ‘extreme’ sporting events (cycling, back-to-back football games, all-day streetball, etc…) and I do not remember ever feeling so tired. Despite being tired, I was unable to sleep because I feared it would all happen again if I wasn’t alert. I wasn’t able to stop it before, why could I stop it again if I was alert? I don’t know, but the thought persisted.
I don’t think that I can explain what it’s like in a way that will make the reader empathize. The initial shooting pain I think is conceivable by most people. Maybe mild vertigo is something that you recall at some point. The pain that makes you tear up no matter how hard you try to hold it back perhaps?
The headache itself, at its apex, consumed me. It is pure pain with waves of relent that only grant you enough consciousness to recognize the pain.
Perhaps it’s a trite analogy, but that short moment after stubbing your toe when the world ceases to exists except for the realization of pain. That transient moment at the very inception of that experience. The apogee of the initial moment. Extended it to 15 minutes, 30 minutes, an hour. Magnify it by whatever multiplier that you can dream up. Shove it in your head.
That’s the start of a cluster headache, before it gets bad.
Everyone has been asked “On a scale of 1 to 10 how much does it hurt?”
I’ve broken quite a few bones. The most painful I rated at an 8. It hurt, but with some sort of bravado I would lower the number a bit, and a bit of intellectual honesty would make me recognize “there’s surely worse anyway”. I had a tooth drilled without local anesthetic. I would have rated that at a 9, bordering on a 10. Early in the progression of the neuropathic disease was sciatic pain. I rated that a 10 on multiple occasions. Sciatic pain is super not cool, dude.
I’ve heard of traumas which are greater than anything I’ve experienced or seen which I believe would make me halve those numbers in relation.
Since my first cluster headache, let alone the next few dozen, everything else is less than a 1. It’s inconceivable for anything else to compare.
I don’t bring this up to reinforce the pain level of these headaches, but because of how strange it is to me that I struggle with that question now. I didn’t realize how subjective a ‘pain scale’ is, and how much it relies on prior experience.
I’m not a humanitarian, and there are a few people on this world I would wish unending cluster headache pain to, but these experiences have lead me to question the value of a pain scale for anything other than emergency cognitive evaluation.
As far as I’m aware, the cause is unknown. I have read anecdotes galore of people with autonomic diseases who received their agonizing gifts sometime after their autonomic diagnosis. Given that I expressed my first symptoms of autonomic neuropathy 7 years prior, it appears to be a reasonable assumption.
My cluster headaches have always happened in the early summer. “Normal” migraines in the early spring.
I have not identified any triggers.
Cluster headache symptoms vary. Here’s my experience:
- Initially - shooting pain up back of neck or head, into eyeball. This is consistent.
- Intense pressure behind left eye.
- A warmth behind the eyeball that progresses to an intense burning, then to an uncharacterizable pain.
- Vertigo - the sensation that the floor or my surroundings are being moved around me, often violently.
- Ringing in both ears.
The impact is acute. The headaches last at most 45 minutes for me.
After an episode, I feel exhausted. My depth perception is usually poor (I assume because my left eye is half/fully shut for hours after).
I develop a guilt, and a need to validate my existence. I tend to force myself to engage some productive activity soon as I can.
Incidentally, I was struck with a cluster headache in the shop once and it was one of the shortest I’ve experienced. When it subsided my eyes were burning. After a long and thorough rinse (which is typical post-cluster) I went back to the shop and concluded that I had splashed acetone that was in my hands, into my eyes.
By no means would I ever suggest acetone in your eyes, nor do I think that I would intentionally do it again, but I can’t help think that something about that experience reduced the severity of that headache. Perhaps the introduction of an external pain source? Stimulation of something in/around the eye? Coincidence?
DO NOT PUT ACETONE IN YOUR EYES
- Emgality - Did not work great for migraines. Excellent reduction in Cluster Headache frequency.
- Caused constipation
- X Aimovig - Unsuccessful. No reduction in migraines nor cluster headaches.
- Significant constipation
Because of some symptoms of neuropathy, I’ve built a habit of knowing where my nearest safe places are: a ledge, a handrail, a chair.
After my first embarrassing cluster headache in public I started to keep constant track of how to quickly deal with that situation should it arise.
- Where is the bathroom in this building?
- How far am I from the front door?
- Is there a small corner I could quickly get to and sit?
I think about these things in every place I go. I’ve become less shy about exploring familiar or frequent places so I can exit routes or a safe place to handle my issue.
I get migraines with aura, and silent migraines relatively frequently. The highest density of occurrence is in the Spring, and they always sometime after noon (though, once a migraine has begun it can last for days).
Cause is unknown. I do not drink caffeine, and I’ve had migraines since I was 14. I have multiple immediate family members with severe migraines.
I kept a detailed headache diary for 3 years, and discovered a few specific, consistent triggers:
- Tea tree oil (not tea tree seed oil, which I use without issue)
- Rosemary oil
- Certain sanitizing sprays - I’m unsure which ingredient it is (definitely not ethanol), but the Covid situation has taught me that a migraine is a spray away.
- Tension Headache - Most people can relate to tension headaches. They happen, they are not pleasant. Tension headaches trigger migraines for me without exception.
I advocate keeping a headache diary if you have headaches. Note everywhere you go, what you eat, what shampoos/detergents you use, the date, the clothes you wear, the medications you take, the drinks you drink, the people you see, etc… everything.
I get an aura 90% of the time, and about half those times I do not get headache pain. I’ll separate these sections into aura and headache.
Listed in order of frequency. Marked with a + only happen in migraines with headache.
- Ptosis - My left eye droops. I usually do not notice, but my wife and other people do.
- Photopsia - This is the initial aura symptom most that I experience most of the time. It looks like someone took a flash photograph behind me and I barely caught the edge of the flash in my peripheral vision.
- Photophobia - This isn’t the feeling of “oh, it’s too bright out, I need to put on some sunglasses”. It’s like when you put your hands under a faucet and the water is too hot. The surprise, the pain, the instant desire to retreat.
- I’ve have a full opthamalogical workup. Eyes are fine.
- Scintillating scotoma - or as I call them “the wormies”. Joseph and the technicolor worm farm. Jem and the Holoworms.
Hyperacusis - This happens with all migraine headaches. I can determine fairly early if I will get a migraine headache when certain sounds begin to sound unusually loud. I’ve recently begun to suspect that certain sounds can turn a silent migraine into a migraine headache.
- I’m not bothered by all sounds equally. Specifically crunching/crackling/crispy sound like my head is in a giant can, and it’s being crushed while I’m inside. The sound of a bag crunching sounds louder than a car crash.
- Auditory Hallucinations - With particularly severe migraines, I often believe I hear someone speaking in the distance, or someone whispering nearby.
- Pain around eyes
- Pain above forehead
- Occasionally intense pain from any sound.
At some point in my life I had a great deal of difficulty coping with migraines. Over time I’ve come up with a number of strategies that allow me to at least get a 6-9 hour work day out of a migraine day.
- The Headache Hat - I’m shilling here. This is THE BEST way to get ice on your head for a headache. There are 3 channels with plastic encased freezable liquid. It is comfortable. They last. It helps. I have 4 of them so I can cycle them in the freezer quickly.
- I’ve found that putting these on “in reverse” offers the most relief. Place it so the ice sits on the base of my skull, rather than on my forehead.
- 3m Peltor 105 earmuffs - I wear these around the house when sound bothers me. Within the last few months I’ve started to wear them before sounds bother me, and it seems that it reduces the likelihood that an aura will turn into a severe headache.
- I’ll usually wear earplugs underneath them as well.
- Green Light - I discovered this on my own, and out of curiosity found that it appears to have been independently discovered elsewhere. It doesn’t fix the problem, but I can tolerate slightly brighter green light than any other part of the spectrum.
- Costa del mar Fisch Sunglasses - I wear these indoors, with lights off. It makes a tremendous difference.
- Spicy Foods - I can’t do this anymore, but when I was younger, finding the HOTTEST of hot sauces and punishing myself with it would almost instantly cure the migraine. This ‘treatment’ brought its own host of issues though :)
- French fries - Yep, french fries again. 15-30 minutes of mild relief.
Medications marked with an X did not work.
- X Emgality - Did not help with migraines.
- Caused constipation
- X Aimovig - Unsuccessful. No reduction in migraines nor cluster headaches.
- Significant constipation.
- Topamax - Intolerable tingling on my scalp. Was unable to continue.
- Toradol - Orally does not help. Injection helps some. As part of a migraine infusion, it helps significantly.
- Sprix - Intranasal Ketorolac. The first few times I tried it, it was a miracle. Relief within minutes. I’ve been unable to acquire it since.
- Butalbitol - If I get a tension headache, this is the only medication I’ve found that prevents it from becoming a migraine. Migraine abortives have not helped, nor other painkillers.
- Midrin - Midrin is a miracle drug for me, and has been discontinued. The newer version does not work nearly as well.
- X Ubrelvy
- Nurtec - Does not abort the migraine quickly for me. It takes approximately 12 hours for it to kick in, despite “1 hour” being the advertised time to action. Has aborted status migrainous for me twice with no other intervention.
- Maxalt - Reduces severity well. No other effect.
- Reyvow - Kills the migraine. However it also puts me to sleep. It’s sometimes worth the tradeoff since it works quickly. I generally rather have a mild migraine and some level of consciousness than no migraine and no consciousness. Reyvow only provides the latter.
- Zofran - Kicks nausea in the ass.
- Magnesium Citrate - This is the winner for me, despite other types of magnesium having superior biological qualities. Magnesium Citrate works the best to reduce migraine frequency for me.
- Magnesium Chloride
- Magnesium Aspartate
- Chelated Magnesium
Nothing except avoid known triggers.
A few years after the initial Neuropathy symptoms appeared, I developed Panic Disorder. I’ve since learned to deal with it particularly well.
Like most people with panic disorder, there’s no anxiety. The attacks are not born out of stress, worry, fear of some negative outcome or similar psychological components.
While having a panic attack, I have a number of physical symptoms but am able to communicate clearly and calmly. The panic attacks come without warning, and leave with no lasting effect except complete exhaustion.
There is no medically identified cause.
Given that I’m aware of specific triggers, I believe that my panic attacks are directly related to the autonomic neuropathy.
I can reliably trigger a panic attack within 1-3 hours by eating spicy food, food high in galactans or taking a moderately large dose of magnesium citrate and potassium citrate.
I’ve been told that it’s rare to have panic attacks longer than 15 minutes. Mine have lasted up to 3 hours, and usually no less than an hour.
Approximately 1/3 of my panic attacks have occurred in the middle of the night. I wake up in a panic attack.
- Vertigo - Every panic attack for me starts with a MASSIVE crash of vertigo. I often scramble to grab something near me, my head swirls, I jump.
- Jumping - Sometimes I’ll jump up, or jerk to the side (always the left side) quickly.
- Chest pain - Deep throbbing pain, right over the heart. Sometimes it’s enough to make breathing difficult.
- Desire to flee - I believe that I need to run, fast and far. I’m sure my wife could relate how many times I’ve said, “I feel like I need to run”.
- Sense of doom - It’s exactly what it sounds like.
- Near instant, profuse sweating.
- Increased breathing rate.
- Ringing in the ears.
- Choking sensation - There is a combined sensation that I cannot swallow, and that I have something in my throat, despite being able to breathe without issue. During my first few dozen panic attacks this lead to frequent swallowing of air and burping.
- Near the beginning of panic attacks, I almost always need to urinate.
- Depersonalization - Longer panic attacks result in the feeling that I am observing myself exist.
- Derealization is a common symptom during panic attacks, but I do not experience it.
Importantly there are some things that don’t happen when I have a panic attack, or are paradoxical:
- My mental state is calm, and I’m able to reason clear as I normally can.
- Heart rate does not raise, sometimes lowers. (According to my Apple Watch)
Limited Symptom Attacks
I have what are called Limited Symptom Attacks as well. Specifically a handful of symptoms:
- Sharp vertigo spells
- Profuse sweating
- Ringing ears
- Increased Motility
- Drop in heart rate.
I’ve started calling these “autonomic attacks”. They seem to be a swath of autonomic related dysfunctions that happen mildly, all at once.
For approximately 5 months after my first major panic attack, I rarely left the house. For a period of 2 months I developed complete agoraphobia and did not exit the home at all.
I was able to reduce the agoraphobia symptoms over the course of a year while I developed and practiced strategies to deal with panic attacks if they should occur.
Spicy foods and Alliums will trigger a panic attack reliably within an hour or so.
These are the same things that trigger an increase in neuropathic symptoms for days after ingestion as well.
Medications marked with an X did not work.
- Ativan - I take this only when I feel precursor symptoms to a panic attack.
- Every other Benzo that I’ve tried has made the panic worse.
- Atarax - 25-50mg has been the best panic abortive that I have used.
- Sectral - I had already been taking Sectral for autonomic concerns, and it is not usually prescribed for panic or anxiety. I was advised to try increasing my dose and it reduced frequency of panic attacks.
- X Trazodone - Made me feel like mud and nothing else.
- X Buspirone - nothing.
- X Lexapro - Mild reduction in severity, but not frequency of panic attacks. Caused impotence, a feeling of imbalance and somnolence.
- X Celexa - Identical experience to Lexapro.
- X Klonopin - Increased all symptoms for me, short-term developed psychological symptoms during the attack.
- This list is incomplete. I tried a number of SSRIs to no effect, and I do not have log of them.
The single best mitigation strategy I’ve developed is honesty. I’ve learned to express if/when I’m having a panic attack to anyone without embarrassment.
Expressing what is happening to another person has allowed me to internalize the transient nature of the attack, and allow myself to ask for assistance when necessary. Knowing both that the attack will end and that there is a sympathetic party reduces any mounting pyschological symptoms and helps me focus on waiting for the attack to subside.
I practice breathing techniques of 2:1 exhale:inhale when I’m not having a panic attack. During a panic attack, the exhalation focused breathing reduces the likelihood of hyperventilation which can prolong the panic attack and/or increase symptom severity. This practice was tremendously helpful.
Obsessive Compulsive Disorder
I was diagnosed with severe Obsessive-Compulsive Disorder in ~2015 after many years of having presenting symptoms.
The severity of the disorder was diagnosed relative to my insistence/avoidance of specific situations.
There can be a cascade of diagnosises from a single initial diagnosis. For instance, I’ve had difficult with Obsessive Compulsive Disorder symptoms since I was young, and I developed a variety of ways to reduce their impact on my life or how to hide them. It wasn’t until I developed Panic Disorder later in life that I saw a psychologist that quickly picked up on the OCD symptoms.
The OCD gets in my way constantly, and it prevents me from doing things that I might otherwise do. However, I’ve always been ‘the weird kid’ and have not suffered a hit to my self-esteem from it. This combination has lead me to not view myself as needing treatment for this disorder, and rejecting treatment for it. I have come to view some of these symptoms, sans the fear and anxiety they bring, as core to my identity.
Unknown. I have had symptoms since I can remember. I was not made aware that these were symptoms of OCD (let alone abnormal behaviours!) until I was in my 30s.
- Intrusive thoughts about air vehicle disasters - Often I would develop a sudden and intense fear that some vehicle would fall from the sky and kill me unless I did some small task. Something as small as aligning a pen with the edge of the table.
- This is coupled with all other things listed, i.e. if I do not ‘do that thing’, then something will fall from the sky and kill me.
- Pairs - I have to do everything in pairs, or in what I decide is a “pair”. These may not be identical, but some attribute which I arbitrarily decide makes a pair. I’ve become adept at finding the appropriate classification to make something ‘a pair’ to ease the associated negative psychological state that would arise from a single thing or action.
- This has lead to some extreme overspending in a few cases where I’ve ‘had’ to get pairs of pairs of pairs, or spent a premium to acquire a pair of something.
- Eating - every meal I prepare for myself includes an internal fight over whether it’s enough food or not, with an intrusive theme of starvation.
- I have managed to reframe this as a fear of being overweight, resulting in quick consistent weight loss. I have cycled between 160lbs and 325lbs twice because of this in <10 years. My weight has varied a total of over 500lbs in that time period.
- Alignment - I don’t mind if things are generally unaligned or disorganized, but I will often fixate on a single item and need to align it.
- Common example - About 75% of the time when I eat french fries, a fear builds with a need to align all of the french fries so they are colinear. If/when this happens, I can not eat the french fries until they are aligned. This often happens with the pens on my desk as well, and once they are aligned I can scatter them again.
- Sometimes I will remove all of the food from my plate/basket/wrapper and re-align so things are colinear or coplanar.
- Touching - I do not touch other people except my wife, or my brother. I can force myself to shake hands, and I will need to clean my hands immediately. I DO NOT like being touched by other people, in any circumstances. I become irrationally upset and feel dirty.
- I used to carry extra clothing with me in a backpack, or in a van, so I could change if someone touched me.
- Refusing handshakes has lead to some awkward situations, and at least one lost job opportunity.
- Tuning - I can not handle an instrument which is not tuned in some regular fashion (not necessarily 12-tet). I have to tune the instrument, or leave the area.
- A funny/interesting exception is that I can leave my wife’s guitar in an out-of-tune state. It doesn’t bother me at all.
- Organization - I will obsessively organize information to absurd degrees (well beyond what you see on this website). For any given spreadsheet, article or video, you can be certain that there’s excessive notes that I had to distill to get to that point.
- Scheduling - For a long period of time I would schedule every aspect of my life. If the schedule deviated then I would become angry and rush to re-schedule everything. Since the neuropathies have begun affecting my life, it has become overwhelming to constantly reschedule self-imposed deadlines that I did not meet. I still schedule a lot of things, but the associated fear and anger has subsided a bit, and continues to subside.
- Re-reading - I get stuck in a loop reading things. If I don’t feel that I understand every word, I’ll read it again. Sometimes I can not do anything but walk away as I can’t force myself to the next sentence without feeling an overwhelming sense of dread.
- Clearly this is detrimental when the information that clarifies is just one sentence away.
- When I write, I look away from the screen or paper or I will get stuck in a loop from trying to read an incomplete sentence.
- A nice side effect of this is that I can write straight on an unlined surface :)
All of these symptoms come with a building fear that if I don’t do it, some indistinct negative outcome will befall me. Sometimes it’s a fierce fear that triggers an anxiety attack (but not a panic attack).
I’ve learned to manage the OCD well. I came up with ways to deal with all outcomes, and when I was younger I somehow trained myself that if I leave the area then everything is fine.
I do avoid situations where there might be touching (handshaking) or close proximity to others. I am not a shy person, but I actively avoid social situations because of the touching concern. My natural introverted state has been strengthened by that fear.
Symptom Specific. I just work around it. I don’t think I’ve ever been embarrassed about any of these things, and I’ve become rather proud of a few of them.
I have not taken any drugs specifically for OCD, despite insistence from psychiatric health professionals.
I feel that the symptoms of my OCD define me as a person at some level, and that reducing those symptoms or eliminating them will halve my value as a human.
I still do not feel like the symptoms are intrusive enough that I can’t come up with a solution to hide them or utilize them in a demi-productive manner.