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Greetings. I’m Jeff Johnson and I founded Digital Ruby in 2009 in order to learn how to run a software company, teach myself mobile programming and expand my skills and knowledge. I craft all manner of software including mobile apps, websites, security and even Unity and visual fx.
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 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.
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.
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.
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.
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 🙂
My health situation has continued to get worse. Brain issues including tinnitus, vertigo, brain zaps, general migraine along with anxiety and depression that comes with that are all a big challenge still. I have started reaching out to specialty clinics around the country in an attempt to find a root cause. I’ve tried diet and so many medications and supplements with only minor successes at best. I’ve taken short term disability with my day job and have had to limit my screen time to no more than 30-60 minutes a day. Sadly, using a screen or even just reading anything (even a paper book) exacerbates my symptoms. But I will keep fighting this and am determined to get stabilized. I feel like before all of this I was living life on easy mode. Now I have been giving a giant kick in the pants and if I get through this I hope that the rest of my life will be different, that I will be a better person, more driven to do good in the world and enjoy life’s experiences.
Thanks for visiting, best wishes and health to you!
So I had an emergency appendectomy in early February and am just starting to recover from it. There were complications with internal bleeding and inflammation that caused significant pain and discomfort. Thankfully my body is slowly absorbing the blood and they have not had to go in a second time to clean me out 🙂
I am still dealing with brain zaps, dizziness and very bad ringing in the ears. This makes sleep an incredible challenge.
Nevertheless, I am continuing work on IPBan Pro and will strive to make it the best software on the planet to block out hackers and botnets.