Misophonia & ASMR

Unsurprisingly, I had misophonia. It seems to go along with all my other neurological symptoms. But a large part of this may be psychological as well. I grew up with a mother with very few teeth, so all sorts of mouth sounds (chewing, lip smacking, teeth sucking noises) really REALLY bother me.

According to the mayo clinic, misophonia is simply a strong reaction to sounds. For me, it produces extreme anger. Like an urge to do something violent to the person making the noises. It makes sitting in quiet break rooms where coworkers are eating, absolutely miserable. So much so, that I’ve skipped lunch a few times and just sat outside somewhere that’s got background noise.

ASMR stands for Autonomous Sensory Meridian Response, which is described as a pleasant tingling sensation that begins at the scalp and moves downward.

Lucky me, I can also experience ASMR; not everyone can. For me it starts as a tingling sensation in my right leg and travels upward to my skull. From there is feels like tiny waves of tingling going from the base of my skull and fading away into the top of my skull. It’s very pleasant, very relaxing, and very enjoyable.

Recently my misophonia hasn’t been bothering me as significantly as it used to, and I think it’s because of ASMR videos I’ve been watching to relax. I started off watching role plays and gradually made my way into uncharted territory… mouth sounds and eating videos. I couldn’t listen at first, but slowly, I began to not hate it. Maybe because of how it was presented… Soft light and pastel lip gloss while a pretty girl makes kissing sounds on one side of the camera’s mic?

Just this morning I sat in a meeting where a coworker was eating a bagel. And I didn’t feel overcome with rage. There’s some science here that I haven’t quite figured out yet, but it’s good. It’s got something to do with nerves, I know  that much. I have what I think is a pinched nerve in my right leg (sciatica?) and that spot where I feel the most pain is where my tingling begins. Then it hits the nerves in the back of my head (where I get RFA treatments for occipital neuralgia) and ends at my eyes becoming very sleepy. It’s a pleasant experience, but I can’t be expected to get up and get things done after. Because I’m usually asleep on the couch.


Happy Birthday To Me (FT. Koi CBD)

I bought it. Or at least some version of it. I know I originally wanted to try the Genesis CBD but when I had the money in my account to purchase, they were sold out :(. And I was going to order, THAT day, no exceptions. I wanted something that would ship in time to be a birthday present to myself.

Here’s what it looks like.

I ordered the 500 mg. It tastes like warm vanilla smoke, but in a bad way. It’s hard to get down. I have to chase it with few large gulps of water. And then it still leaves a gross taste in my mouth.

At this point, I’m not 100% sure if it does anything. The first couple times I took it I got a little sleepy (or this might have been completely unrelated sleepiness; I’m always tired and working on correcting my sleep disorder.) I’m going to continue to take this and see what happens. I want to do a proper test on a few bad headache days and see if it gives any sort of relief or even distraction, and for how long. I’ll make up a little chart and everything.

How I usually dose it is about 2 droppers full in the morning, or whenever I begin my day. And then 1 to 2 (or even 3) as needed for extra pain throughout the day. Is it doing anything? Am I experiencing some sort of placebo effect? Find out next time on the next episode of DBZ…

(I started this post like 2 weeks ago when it actually was my birthday, but never got around to finishing/uploading until today).

That Feeling

Lately I’ve been having that feeling.

The one where you just want to stop taking all your medications and just suffer.

To punish your own body for punishing you for so long.

Lately I’ve been giving that feeling serious thought. Because of side effects.

Side effects that my doctor has “never heard of before” and that “shouldn’t be happening because of this medication”. Nevertheless, I’m experiencing them. And every time I stop the medication, these side effects go away. It’s at the point where I would rather have high blood pressure than suffer through this side effect.

I do want to lessen the amount of medication I take daily. Although taking medication makes me feel like my conditions are more “real” and it’s not just all in my head as I’ve been told for years.

Still Months Away from a Neurologist

When my neurologist left Johns Hopkins, I was distraught at the fact that I had to find a new one. I knew it would take time. And I’m usually a very patient person, but I’ve been without pain relief for too long now. But I scheduled a new patient appointment with another neurologist anyway and was determined to wait my 6months.

This month is January. My appointment was supposed to be February 1st, which was no problem! I could wait a month, that would be fine. I will just do my over the counter routine and it won’t be too bad because it’s only a month!

Surprise! They call to cancel my appointment. My doctor is now doing inpatient only that month, which is so not anyones fault and I don’t blame them, but I’m still upset. The earliest they could schedule me was June 1st. As in 6months from now JUNE 1ST! Now, THAT I don’t know how I’m going to make it to.

I do have an appointment with the Nurse Practitioner near the end of this month, but I’m not 100% sure what she can do for me? Can she prescribe me new medications? Can she recommend me for the nerve burning procedure? I just need SOMETHING that will work.

I’m going to make a list of everything I want her to cover with me and bring it so I won’t forget anything. So far that list looks like:

  • Botox?! is it worth/too expensive!!
  • Nerve Blocks work but are too temporary
  • Can she get me into the pain clinic for the nerve burning?
  • Stimulator trial?
  • plz just tell me to hang in there

Linda White, please don’t fail me now!

NOIR N81 Plum 20% UV Sheild Sunglasses

I’ve had these for a little bit now, maybe 3 months?

I like them. They block out more light than any drugstore sunglasses. They have a purple filter that helps me deal with some contrast issues as well. They make my visual snow just a tiny bit more manageable I think. Or maybe because I can actually open my eyes outside with them, I think I can see more clearly.

I do think that I will have to get something that blocks out even more light in the future. I am still getting major eye and headache pain from sunlight or highly contrasted things.

These cost me about $50 on amazon. I am not a fan of their style.. it makes me feel like my eyes look droopy, but I don’t even mind if they help me out!

These are just one of the many tools I have to help me cope. 🙂

Here are some links if you want to check them out for yourself: