Migraines part 2

So, today I had my first round of Botox for my migraines. My neurologist is very optimistic about it, more than I am actually. Not that I think it won't help, I do. It's just that there's a lot of mixed reports out there. Clearly it helps enough that most insurance covers it, and folks are willing to have someone shoot them up with botulism toxin 31 times every few months.

In my case, I have several conditions that can be treated with the Botox injections. I'm not sure what the protocol is for everything else, but the benefit of having the 31 sites done is that it covers the other areas too. It's possible that those conditions are contributing to the migraines. So, here's what else I have going on that will hopefully improve with the injections: Dystonia, TMJ, and some mysterious eyeball stabbing that is constant and only occurs on the right side (my eye doc thinks it's an atypical type of the dreaded trigeminal neuralgia). I decided to give the Botox a go even though there's mixed results for migraine improvement. SOMETHING will get better, if not the migraines.
I'll talk more about the other stuff in a separate post, but I'd like to describe my experience from today.

I tend to be apprehensive when it comes to trying any new medication. I've had some pretty bad experiences in the past. That wasn't the case today- this was a last resort for me as far as treatment goes and is something that was thoroughly discussed with my other doctors. Any questions I had were answered and I felt like I had a good understanding of the risks and benefits. I wanted to make sure everyone was on the same page and that we were prepared in case I had any sort of reaction. It also helps that I'm not afraid of needles*! I was concerned about ice packs, but I'll get to that.

So, I had to sign some consent forms before the Botox. They were read to me by one of the assistants and she answered my questions about the paperwork. It basically said that I was giving consent for the injections, I understood the risks, and that if anything wacky happens I wouldn't hold them responsible. They wrote down the lot number from the vial, and I signed. Then, she offered me an ice pack, which confused the heck out of me. So, she left shaking her head and offered to run it by the doctor. That sounded fine by me, so I waited for Dr.New-Neuro to come in and get started.
Dr.New-Neuro: 'So, this is the first time you're getting the Botox, right?'
Me: 'Yes.'
Dr.New-Neuro: 'Ok. Umm, did you want an ice pack?'
Me: 'I don't do well with ice, it makes the dystonia worse. Why exactly would I need one anyway?'
Dr.New-Neuro: 'Yeah, it's probably not a good idea then. It's mostly just for pain.'
Me: 'Ah...umm, how bad is it?'
Dr.New-Neuro: 'I try to go quick so there's not a lot of time for it to register.'
Me: 'How long does it take?'
Dr.New-Neuro: 'Well, it is 31 injections. But mixing it is what takes the longest. The injections take about ten minutes if you don't push me away kicking and screaming.'
Me: (slightly apprehensive) 'I'm thinking it won't be all that bad, I have a fairly high tolerance for pain and I'm pretty chill.'

So, sans ice pack, she had me hop on the exam table and lay on my back. I got rid of as many things that were on my person as was socially acceptable-- shoes, socks, hearing aid, fuzzy, etc. The fewer things I have on, the more relaxed I'll be. Sensory issues suck.

She started the injections across the forehead, and it was not deal at all! I was more uncomfortable from the pants I had on. She did work fast, but was very attentive to where my problem areas were--
particularly around my jaw joints, right eye, and the part of my neck where the dystonia is bad. Then
she checked the sites and that was it. It was actually under ten minutes, since I didn't move/scream/freak out. I didn't even bleed after-- apparently I'm among her better patients.
We went over a few unrelated things and then I was off, with a few alcohol pads just incase I oozed on the way home. So, far so good! I'll post more periodically and update when I see her next month.




*I do however, have a phobia of iv units

Migraines part 1

Migraines suck. I'm sure someone reading this has had the misfortune of discovering how dreadful they are/can be. I've had them here and there throughout my life. As a baby, I would get them because my adenoids were severely infected and they were pushing on my brain.*

I don't know if there's any connection, but around the same time I started to develop sensitivities to food/chemicals in food. And then came severe sensory issues, which are still a big problem. I've since learned to say that I'm cold when folks wonder why I'm all swaddled up in my mummy bag--it's just easier that way. And most of the time that's actually true. If anyone has any information about patient support and advocacy groups, feel free to let loose in the comments.

Back to the migraines-
For years I was getting a whole lot of weird symptoms, but without any headaches. So, I just ignored the weirdness for a long time. Then one morning in February 2008, I started to experience flashing lights in my left eye.  I still get that a lot and there's no connection to the headache part, is still and has only ever happened in my left eye, and is still there even when my eye(s) are closed. I've only had a few migraines after the left-sided-light-show started, until....

One day in September 2016. I have had a CONSTANT migraine since then. We've tried a bunch of things, but it's challenging to break up migraine under 'normal' circumstances, forget about one that's been going on for well over a year! On top of that, I'm either allergic to, or can't tolerate a good deal of the meds they tend to use. On top of that, I have yet to identify any triggers. So, in 14hrs I'm going for Botox (my phone calls it 'Baw-tux'). I'll report back afterwards, as well as talk a bit more about my experience with migraines since every migraineur is different.

I'm hopeful that I'll get some benefit from it as my expectations are realistic and I also have several dx's that respond to Botox. That's it for the moment, more to come later today. But, right now I'm going to get back to spoiling Voltaire :)



* So my mum tells me. I'm not sure where those medical records are or how I can get them.

Technical difficulties

I've been having a hard time with posting pictures, so apologies for the text-centric posts. I'm not sure if there's a conflict with my screen reader or what (it tends to dislike images). I should have it sorted out soon. I'm gonna try a few things later, so we'll see how that goes.

Cure what ails you

It's flu season, yippee!
Here's a simple recipe to chase that cold away fast! The base is veggie friendly, so everyone can benefit from this super soup!

Super soup base:
8-10 pieces of astragalus root (they look like tongue depressors)
2 medium cloves of garlic, smashed a bit to release the oils
1/2 cup dried shiitake mushrooms

Combine the above in a large pot and boil the ever living out of it for about an hour. The size of the stock pot doesn't matter much, as you can continue to reduce it to the amount you need.
Use this as a base for your chicken noodle soup. Add it after you sauté any veggies that you usually use. Just strain it before adding. The remaining dregs from the base can be frozen for next time.

Stay well!

A new take on the oldest profession

...And also more fun at the doctors
So, my primary care doc is amazing. Not only is he also my cardiologist, but he is absolutely hilarious! Here's a recent sample of such an exchange after politicking about health care and our ancestral lands. I'll be paraphrasing and substituting a few details to protect identities.
Me: 'I was looking into dual citizenship for Egypt, but their health care seems pretty backwards. I dunno if I'd be able to get citizenship through Turkey, cuz that's three generations back.'
Dr.Heart-Strings: 'That whole part of the world is pretty backwards, but Turkey isn't as bad.'
Me: 'Yeah, that's what I've heard. They seem to be the most progressive.'
Dr.Heart-Strings: 'The people there were great. I passed through Egypt and didn't much like it- they didn't have a great attitude so I didn't stick around long.'
Me: 'That sucks, I'm sorry.'
Dr.Heart-Strings: 'Yeah and I didn't really have much interest in seeing anything there. I'm a doctor! I don't want to see dead people, I treat the living!'
I begin to crack up at this point, but there's more...
Dr.Heart-Strings continues: 'They're prostitutes! I mean, they call them ''mummies'', but they're still selling their bodies!'
At this point I'm laughing quite hard, but he continues!
Dr.Heart-Strings: '...and then they call it halal!'
I couldn't take it anymore and neither could he--we burst out in raucous laughter and tears of hilarity.
Truly a great man! As they say, 'laughter is the best medicine.' He definitely fills that rx every time, and he's got a million of 'em!
More to come from him in future posts,
but that's all for now!

Fun at the Doctors

Every year I have to go for a routine eye exam. Not a big deal, I've been a patient there for years and the office staff is pretty much the same. I am a long cane user (especially if I don't bring a set of eyes with me), and tend to have it with me since that office can be crowded. So, every year without fail this is how it goes:
I wobble in with 'Toby' (my cane) and go to the window.
Me: 'I'm here to see Dr.Eyeballs for whatever-o'clock'.
Window Lady: 'Ok. Here's some paperwork'.
Me: 'I can't fill that out myself. I can wait until you're not busy'.
WL: 'Why can't you fill it out?'
Me: 'Because I'm blind'.

I have the same exchange every year, and that same lady is always there. Granted, I'm not completely blind. But I had Toby with me and he's hard to miss!

Arg! Oh, well...

Intro

Welcome!
Might take a bit to iron out some kinks, screen readers have some limitations so bear with me. I'll probably post several times a day since a lot of things pop into my head, and my phone does silly things that I think are worth sharing. I tend to listen to a lot of music and love mondegreens, so prepare for a bunch of those to show up in posts.

Voltaire is my companion bunny, and she just turned five. Happy birthday Voltaire! I maintain that rabbits have a therapeutic value equal to kittens, but are pretty much furry toddlers their whole lives.

I 'read' a lot of books--my state has a great programme that sends out free audio books. Some are better than others, and a I'm sure they'll find their way here.

That's about it for now--
I'm friends with Voltaire, and you should be too!