Health Update – August 2021

Greetings once again. I spent some time at the Mayo Clinic a few months ago. I came out of there with a diagnosis that fits pretty well with what I am dealing with:

– Chronic PPPD
– Chronic, sometimes intermittent vestibular migraine
– Chronic tinnitus
– Occasional BPPV

There is a lot of medical terms, so I will sum up, but feel free to search this stuff up online if you are curious.

PPPD:

PPPD stands for Persistent postural-perceptual dizziness. Essentially I am always dizzy, unsteady and foggy. Some days are worse than others. I treat this condition with medication and a lot of vestibular therapy. Mayo Clinic hopes that I can improve 50-85% long term. Right now I would say I am hitting more in the 25% range improvement from my worst. I hope long term to get this under control.

Vestibular Migraine:

I get regular migraines. They are moderately painful, but the more debilitating symptom is the inability to focus on anything, including computer screens. When I get these really bad, I have to close my eyes for hours until they settle down. I deal with these weekly. I’ve tracked them down, partially, to diet and using computer screens too much. I am hoping to put these into remission at some point.

Tinnitus:

My brains auditory system is, for lack of a more scientific term, out of whack. I hear many different sounds all the time – whistling, humming, rumbling, metal grinding, high tones and the like. It is always there and is very loud when things are quiet. This will almost certainly be a life-long condition, barring any medication advances, which are possible, I know of some phase 2 and 3 trials of tinnitus drugs in the works or planned.

BPPV:

About once a year I am getting BPPV. Crystals in the ear responsible for sense of motion and orientation in space come loose and leak into the vestibular canals. This results in extreme vertigo whenever moving my body or head. These episodes last from a day to a few weeks. When this flares up, I am out of commission. Mayo Clinic believes my BPPV flared up my brains vestibular and auditory system, resulting in my chronic symptoms.

I also deal with brain zaps pretty much every day. These happen while using computer screens, hearing certain frequencies and most commonly during the middle of the night and when I am going to sleep or waking up. They are annoying but apparently not harmful. They cause very loud tinnitus bursts, vision distortions and colors, along with a brief sense of vertigo or dizziness.

Treatment plan:

Treating this wide range of symptoms is not possible with a single approach or medication. I found a wonderful website about chronic migraines, Migraine Strong where the woman goes over a treatment pie. Essentially, you throw a lot of treatment options at an incredibly complex system like the brain, in the hopes that some of the efforts will make a difference. My efforts include:

– Regular exercise and stretching.
– Diet (I still struggle, but am trying).
– Stress relief (meditation, massages, soft music, etc.).
– Cognitive behavioral therapy.
– Medication (I have tried a lot of them, I have a few I use now, including for sleep).
– Supplements – I take about 5-10 on any given day.
– Physical therapy (I do vestibular therapy at home daily, forcing my brain to feel dizzy and some vertigo so it gets used to it).
– Chiropractor. They have adjusted the curve of my neck and spine to be optimal, along with loosening me up.
– TMJ – I have a mouth-guard that I wear at night, and it has adjusted my jaw to the optimal position.
– Sleep. I have bad insomnia, and I wake up 4-5 times a night with brain zaps. I do all the classic recommendations for sleep.
– White noise. I cannot sleep without multiple white noise sources. My tinnitus is pretty bad when it is quiet, and the noise helps in part to mask it.

So far I still feel pretty yucky most days. I am learning mostly through the mental health approach to just accept that this is the new state of my life and not expect too much out of myself. These conditions may never get better, and I have to be ok with that fact, but I will keep trying nonetheless.

I think that has been the most helpful part of my treatment pie, mental health.

Please feel free to comment or ask any questions 🙂

– Jeff

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Alfred-DF
Alfred-DF
8 days ago

Found your page randomly after landing on your discord for “fingers” support.
Man, I hope you get better. I feel your pain living through these shit-show times…
Keep up the great work, and keep fighting your battle toward happiness and wellness!
In the meantime, thanks for your software, it helps a lot!