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.

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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.

IMG_7589
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).

Down on Namenda

Just like the Lamictal, here I go again. I’ve started dosing down on my Namenda. I’ve known for quite a bit now that it hasn’t done anything. I mean I don’t think it has. Maybe there was a small benefit at first? Maybe there was no benefit at all? And it was just some sort of placebo.

Whatever the case, I’m dosing myself down to be completely off of it. I’m only doing my morning dose for 1 week, and then it will be none at all. That’ll leave me with only like 2 medications I take everyday?

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.

Suddenly Stopping Cymbalta

I am suddenly stopping Cymbalta, and it is not by choice. I went to the pharmacy to pick up my refill last night, but I left empty handed because my insurance won’t pay for it until the 12th. Somehow I don’t understand. She was telling me the instructions on the bottle stated I should be taking one pill a day. But I’ve always been taking 2/day since I last saw my neurologist. How did I not run out of pills in August then?

I have no idea. But from last night (Sept 6th) until the 12th I will have no Cymbalta to take. I have read all about this withdraw, including a lovely thing called Cymbalta Discontinuation Syndrome. I made it through an extremely difficult Effexor withdraw, but that was with tapering down. In this case, I’m going from the highest dose of Cymbalta, to zero within one day.

I am very conflicted. I like the idea of having to take a medication everyday to control my symptoms and prevent pain. But I have a fear of relying on medication every day as well. It comes from the days when my endometriosis was poorly controlled and I was taking birth control pills like candy. I would double up on pills (based on my doctors recommendation) for a short amount of time to try and prevent all the pain and blood. I would double up so much, that when it came time to get a refill from the pharmacy, it was too soon, and the insurance wouldn’t cover it. And I would cry when they denied me because I didn’t know what I was going to do. Letting the period come meant extreme pain, not eating, not sleeping, and hospital trips where I wasn’t even given anything for the pain. Those pills were the only thing stopping all that from happening, and I wasn’t able to get them when I needed them. And that sounds all too familiar right now. At least with birth control pills, there is no withdrawal symptoms. I am wishing future me luck with the next 6 days.

When I finally do get my Cymbalta back, I think I am going to half my dose anyway. Having no neurologist at the moment makes me free to make shitty decisions.

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.

Waiting for Botox to Work & Reglan

I did the math, it takes about two weeks for the Botox to kick in and some sort of small relief for me. March 24th 2016 was my first round of Botox for migraine. A little over 2 weeks later, on April 9th, we went on a trip and it was the first time in forever when I can recall laughing without pain. So I think that was thanks to the botox? At least I’m hoping so!

My most recent Botox injections was June 23rd. About 2 weeks before that is when I remember being in more pain than the previous months. I suspect it was the botox wearing off. I should expect some relief between July 7-9th. I HOPE. This is all a little frustrating to calculate because there are so many unknowns.

In the meantime… I am trying not to take ibuprofen or anything else OTC. I remembered a prescription I had for Reglan (metoclopramide). After doing some research, I learned this is one of the drugs I was given during that awful infusion process at the end of last year. And one of the side effects is anxiety/feeling panicked.

I don’t feel so good about this decision, but I’m risking it. I’ve got nowhere else to be tonight so if I get hit with side effects, I’ll just wait it out in the bathtub, since that usually calms me down. With a little bit of google research, I took the Reglan with some Benadryl (or the generic equivalent). Desperate times call for desperate measures. Wish me luck!!

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.

migraine-injection-sites
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.

Side Effect

I have had this idea in my head a long time, to make a image that represented (as close as I could) the hand tingling that I got when I was on topamax. It’s like that feeling when a limb falls asleep, it sort of tingles but at the same time is stings. It’s like having TV static in your hands but you can feel the electricity.

Topamax

Thankfully I’m no longer on this drug but I remember the side effects like it was yesterday!