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.

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The CBD Update

It definitely did something. But what, I am not 100% sure. I do know I am going to try it again, as soon as I can afford it. I will need a higher dosage and a better flavor. Having something that felt like warm vanilla smoke in my mouth was WEIRD. I’m not a fan.

So far the CBD verdict: Very much like. Made the day to day much easier to deal with, and I had to take significantly less OTC medicines.

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.

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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).

I’m going to try it.

A friend recently reccomended to me hemp oil for pain. Her suggestion was Charolette’s Web (https://www.cwhemp.com/) which I would LOVE to try. But my bank account disagrees until I know for sure it will work.

So I’m going to try a less expensive one for right now. I’ve decided to go with CBD Genesis (https://cbdvapejuice.net/cbd-drip/cbd-genesis-tincture/) in 550mg strength, although Koi CBD was a close second (https://koicbd.com/product/red-koi-cbd/).

Now I just need to find $60 + shipping somewhere in my budget to purchase it!

Lamictal (Lamotrigine) For Visual Snow

I feel as though I haven’t been updating this as much as I should, probably because I am TIRED. Sleepy girl for life.

This past Monday (1 week ago now) Jan 23rd, I saw my neuro-opthamologist for a follow up. Something about a test result with my retina being slightly abnormal, but I have a follow up with a retina specialist as soon as I email him and find out who he wants me to see. But the most exciting thing is, I finally got a prescription for Lamictal! This mysterious drug that I have been hearing about every time that I have went to see him for about a year now.

It’s an anti-seizure medication but it has shown to help with migraine and visual snow. It’s one where you will slowly have to increase your dose up to the correct amount to see any relief. I’ve only been taking it a week so far, and I am just EXHAUSTED. Never been so sleepy for so long in my life. I decided to caffeinate myself today, which was probably a bad idea, but I have things to do!

I am also very very paranoid of one of the rare side effects, Steven Johnsons syndrome (SJS) for no reason other than it makes your skin fall off and I really don’t want to deal with that.

Let’s see how my lamictal journey goes.

The Migraine Cure

I have a problem. It’s with all these bullshit blog posts and articles out there offering the “cure” for migraines and other conditions, all you have to do is buy their ebook! For example, this one that was sent to me by a friend:

Why Keytones Kill Migraines

And I sighed, said to myself “not again” and started to read the article. I don’t even know why I wasted my time because I knew how this was going to end. I got into an argument with the friend who sent me this, and now I feel really bad. I feel guilty for expressing exactly how I felt. And maybe I was a little harsh and a bit too sarcastic, but I am tired.

I’m so tired of hearing all about diet & exercise & fucking yoga. I promise you, I’ve heard it all and I’ve tried it all. Tell me what a diet is going to do for my neurological disease? I KNOW there’s some science to it. I get it and I understand. And I get that they were just trying to help, I really do! But WHEN did I ask for help??

Damn near every single person who finds out about my disease tells me about how they think they know the cure. And how I need to try this one thing because their coworker’s brother’s son tried it and it worked for him. I know my body and I know my disease. And I promise you, some dipshit on the internet selling a “cure” for my incurable disease isn’t going to help me.

Depakote

The last time I was at Johns Hopkins, I got a prescription for Depakote. My neurologist had mentioned it to me before, but the side effects sort of made me not want to take it. So I have had this drug, just sitting in the bottle on my dresser. I look at it everyday when I take my other medications.

So far my other medications haven’t made a significant change in my pain level. But I am terrified to take the Depakote. The side effects he mostly pitched to me were weight gain, hair loss, and acne. Now I already have acne, and it seems to be mostly under control for the moment. Earlier this year I had a really bad bout of cystic acne which sort of faded away into this more manageable version which can be covered by makeup as long as I don’t mess with my face. I don’t want to gain weight or lose my hair either!

But then there’s the possibility of being migraine free. Of course I can always stop the drug once I notice a bad side effect. But what if I don’t notice until it’s too late? I don’t keep track of my weight all the time, and I know it sort of fluctuates. But I don’t want to get to the point where my pants aren’t fitting anymore! And I love my hair, I don’t know what I would do it more of it falls out than what already does. And the acne, I don’t know if I can go down that road.

For now, the Depakote will sit on the dresser, taunting me every morning and every night.

Some Sort of Hope?

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For the first time in a long time, I am feeling somewhat hopeful. Although I am also afraid this was some sort of fluke.

Thursday June 23rd 2016, something changed. I was scheduled for my 2nd consecutive round of Botox injections, as well as trying an occipital nerve block for the first time. I was nervous. I sat in the waiting room, worried about passing out or something horrible happening. My last session went fine, no dizziness or anything, so there was no real reason to worry this time.

As I laid face down on the table, counting fours as I breathed in and out, a few things happened. (1) I realized that having a needle poked into an already sore nerve in the back of your head HURTS and (2) Maybe it wasn’t so unreasonable for me to be concerned about dizziness earlier. A total of 35 needles later, and I’m sat upright on the edge of the table when the nurse practitioner asks me to rate my pain on a scale of 0 to 10. And I can’t do it.

I cannot locate any pain.

Of course, I’m dizzy and I feel numb and tingly and like there is a bunch of pressure in my head and I cannot think straight, but I cannot locate my pain. I walk out of the building, thinking that I really should have brought someone with me because I cannot walk in a straight line to save my life because of how dizzy I am. I get to the parking lot when it finally hits me.

They did it!!!

All the YEARS of pain, doctors appointments, hospital visits, and crying in the ER and Urgent Care and I am finally here. They have found the problem. I didn’t think I was capable of it, but I began to cry tears of joy. And they won’t stop! I cry the whole drive home.

It lasts for about 4 hours before another migraine hits me. Throbbing, intense pain in the front of my forehead and behind my eyes. But I am still happy. Something happened. I am not sure what yet. And now I have a bunch of new questions for my appointment next month.

Are these nerves really the problem? Is it a combination of things? Do I need to still be on this medication? What does this mean for the future of my treatment?

I don’t want to get my hopes up too high. But I haven’t had hope in a very very long time. And I don’t know what to do with myself.

Namenda & Cymbalta

Wow things have been rough these past weeks! I had what started out as a cold, then turned into the flu and became a sinus infection. Just finished up my antibiotics the other day so I’m almost 100% recovered from that.

Before all that happened, I started taking Namenda (a medication for alzheimer’s patients, but for migraine preventative for me) and Cymbalta (for my depression/anxiety and nerve pain). And since I started both of these at the same time, I feel like I have been underwater. It’s a weird feeling to try and put into words.

I have been on so many medications that affect my brain & how I work. My brain fog has been worse on these medications, maybe because I am still dosing up on them. I have almost been on them for a month. Maybe soon I will even out.

I am too scared right now to say that they may be working for my pain. I have had lots of migraines since I started them, but somehow I am more ok functioning every day? I am very spacey and haven’t been able to do any work, but something is different. I’ve been very content to just sit on the couch or lay down all day and watch netflix/be online all day.

I think I will wait a few days for my brain to even out or something.

Botox Round 2

This past Thursday (March 24th) I had my second round of Botox treatment for migraine!! All 31 shots this time, about 9 months after my “trial” round. It’s too early to feel any benefit.

What I’m dealing with right now is a whole bunch of side effects from the injection sites.

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These are the basic injection sites, a total of 31 injections.

The injections themselves wasn’t too bad, at least this time I didn’t feel like I was going to pass out! But let me tell you, those spots on the side of the head, above the ear, and the very top of the neck, HURT. Now I’m feeling some tenderness in my scalp at the sites. Brushing my hair pulls on them and it hurts! Which is unusual for me because I have never been “tender headed” as my hairdresser puts it. My forehead just feels weird and I hate it.

It’s an unusual process because you can actually hear the needle when it penetrates the skin and feel the cold medicine be pushed in.

Maybe in 2 weeks I will have an update for any relief I am getting. Temporarily I have decided to keep a headache journal again. I am already scheduled for more injections in 3 months, but if I want any after that, I have to beg my insurance and prove that it helps significantly.