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!

Chiari Malformation

I have it. My new neurologist (Dr Rao at Hopkins) looked at my MRI for about 2 seconds and diagnosed me with it. I didn’t know what to say besides “oh”. And I thought back to everyone who came to me and said “Have you heard about this thing called Chiari Malformation?” And my answer was always yes, but I’ve already looked into it and I don’t have it. JOKES ON ME.

I’ve got to find exactly which of my MRIs shows it.

So far my treatment is to drink water; 2.5 L a day, which sounds like torture to me.

The more research I do, the more my symptoms match up pretty much exactly.

 

More Info

It’s June Again

And that makes it Migraine Awareness Month again as well! This year I don’t have any sort of elaborate photography project or anything planned (well, not yet at least) but I’ll figure out something to do for it.  Right now I just want an awareness shirt I can wear. But I can’t afford the fucking $20 to order one online.

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?

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.

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.

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!

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.

Tired

I am TIRED of being tired.

I feel just absolutely exhausted.

I am too tired to think beyond basic functioning. The other day I even took like a 3 hour nap when I got home from work. I guess it really doesn’t help that I’ve quit caffeine as well.

I am going to sleep. And sleep. And when I wake up I hope to be rested!

Hospital Glam October & November

Some hospital glam photos because I’ve been feeling really shit about my health right now.

First photos are from my more recent visit to the cardiologist (FUN STUFF) and the bottom ones are when I had electrodes in my eyes! Remind me to email my doctor to find out the results from those…

I think I’ve been feeling shit about a lot of things lately. Being let down by friends, never having enough money, and my health. I need an outlet. And some friends to talk to.