MRI results are back

I got a printed report in the mail, and things are looking good.

No acute intracranial abnormality.

No significant abnormality along my trigeminal or facial nerves.

Pineal cyst is stable since 2009, probably benign.

There are a few little “hyperintensities” in the right frontoparietal white matter, but of doubtful clinical significance (in every terms, who knows what that means – it’s probably nothing).

Sweet.

The thing is, I don’t have anything annotated on my disk, so I can’t see precisely  what the radiologist is talking about. I have a pretty good idea that the three little dots in the frontoparietal region on the T2 Flair image are what he’s talking about. I’ll just have request an annotated copy, I guess.  Maybe that will have something.

As Mr. Spock would say, “Fascinating…”

why is my brain injury causing me to not understand what people say on tv

Somebody found their way to this blog by searching for this, the other day.

I think that problems sequencing — getting things in order — can cause you to not understand what others are saying. The words get turned around, and they can sound jumbled up.

Also, being distractable can cause you to miss parts of what people are saying.

I don’t know if there’s one exact specific cause for this, but I can relate. Years ago, I was in an automobile accident that shook me up pretty badly — mostly physically. I got t-boned on the driver’s side by a traveling salesman who was late for an appointment. For days after that, I could not understand what people were saying to me. It really threw me off. All of a sudden, I couldn’t understand what people were saying to me. At all.

So, I quit the job I was at and decided to make a career of drinking. That didn’t sit right with my spouse at the time (we parted ways over 25 years ago). But it was fine with me.

Other times I’ve had trouble understanding people after other accidents, and I suspect that some of the times that my parents got the angriest at me, when I was a kid, was when I was actually struggling to understand what people were saying to me, but I was coming across as contrary and disobedient.

It really sucks, being punished for something you cannot control. Something that’s not your fault.

But it happens all the time.

Anyway, it’s been a long week. It’s time to relax and get ready for a long night’s sleep.

Good night.

MRI is done

Not me – but similar

Yesterday was a long friggin’ day. I had my MRI at 7:30 a.m., to get it out of the way. It was fine. It was in one of those mobile units, which I suppose are wonders of modern science, but was still basically an MRI lab in a truck. It was fine. Not exemplary, just fine. The technician doing the work was in a mood, and they were just cranking out patients at a brisk clip. They had a bit of a problem with getting the IV in me, which wasn’t my favorite thing. The other weird thing was, I couldn’t feel the saline they put in, or the contrast agent when it went in. The first time I had it done in 2009, I felt everything. But yesterday I couldn’t feel any of it, past the iv going in.

Odd.

Those kinds of things are exhausting for me, because I have to work really hard to keep still. I tend to twitch and tic involuntarily at times, so I have to really focus on keeping relaxed and still. By the end of the hour, I was beat, and I had some difficulty getting on my feet and walking away. It was a pretty involved brain MRI, and the equipment wasn’t exactly top-notch.

The good thing is, I got a copy of it all right afterwards. How cool is that?! It gives me a chance to study my brain before I go to the doctor. Of course, if I find anything amiss, it could throw me for a loop, but I’d rather be thrown for a loop in the comfort and privacy of my own home, than in a doctor’s office.

Anyway, the MRI hadn’t been read and annotated by someone who knows what they’re looking at, so I didn’t really have any points of comparison to go by.

I did pop the CD in my computer last night and take a look. I found one image that looked like I had a bunch of microbleeds going on. There were all these little clear dark spots speckled throughout my brain. I Googled them and found similar pictures of MRIs of people who had microbleeds. That concerned me a bit. But when I looked at the other images, there was no sign of those same dots, so I’m probably not reading it right.   Also, someone told me back in 2009 that those are actually blood vessels, which makes it good to see them.

It’s always nice to know you’re getting blood to your brain.

So, I have the disk, and I have my 2009 disk. I pulled them up side-by-side yesterday to compare how my brain looks. The problem is, different software is used to view the imagery from different years, so I don’t have a simple point of comparison. Also, the way the files are organized doesn’t make sense in the new one.

Although… I could try copying the files into BOTH software, and look at both years in the same program. I’m not sure that would work, because they appear to be different formats. But that could be confusion on my part.

I hope that works, because I really want to be able to see what’s what.

Just from an initial cursory look, it appears that

A) My pineal cyst looks bigger than last time. I’ll have to wait till the MRI gets read and annotated (and then I’ll request another copy with the radiologist’s notes in it).

B) My brain looks a little smaller than last time. There seems to be more space between my brain tissue and the inside of my skull, and my brain isn’t smushed up against my skull like in 2009. There’s more clearance, and there’s also more definition between the different folds (I think they’re called sulci). I don’t know what that means. I’ve seen pictures of people whose brains have shrunken — a lot — and it’s a little freaky.  On the other hand, if I’m losing certain white matter or grey matter, there may be a way to beef them back up. I know that regular meditation increases gray matter — it’s been documented. So, that’s fairly straightforward, I think. Also, certain types of things will actually shrink your brain — depression and stress, for instance.

Anyway, it’s impossible to say what the deal is with me. I’m not an MD or a radiologist, and who knows what the deal is.

The neuro is supposed to call me with the results, so we’ll see. I have no idea when that will be. I guess no news is good news.

In the meantime, I’ll get my systems together, I’ll spend some time this weekend looking at my MRIs, and I’ll see what I can find about fixing whatever I can.

Oh, as a side note, I am not all that impressed by the quality of the imaging taken in the back of the truck. Maybe it’s the type of MRI I got, but the images are not as clear, they don’t have the same level of detail as the 2009 ones, and some of them look “smudged”. It could be because I may have moved, but there is absolutely no smudging in the 2009 MRI, and I was in worse shape then, than I am now.

At least, I think I was…

Anyway, if I ever get that done again, I’m going to a proper hospital — preferably the one I went to before — to get this done. If I’m going to have heavy metals put into me intravenously, I’d better get some damned good imaging out of it in return.

More to come.

Onward.

Gearing up for my MRI tomorrow morning

At 7:30 tomorrow morning, I’m getting another MRI of my brain. Should be interesting. The last time I got one, I was having seizure-like episodes, and I was being evaluated for possible epilepsy.

Didn’t happen. That is, the tests produced nothing out of the ordinary, and in fact, other than a pineal cyst (which is very common), my brain is perfectly fine and normal and un-interesting (in a good way).

I’m trying to make a copy of my MRI files on CD. The first two tries didn’t work – the computer wasn’t recognizing the blank CD, or it wasn’t realizing it was even there. So, I’m trying it on my laptop, which is a long shot, because it’s been on the fritz.

Worst case, I give them either a thumb drive with all the files on it, or I give them the original CD I got, and I request another from the hospital.

Either way.

As long as I get a copy of the new one, too. I am pretty stoked about getting more images of my brain to look at. It’s a real thrill for me to actually be able to look at my brain. Awesome.

Anyway, the timing is actually pretty good for all this, because after a day of feeling increasingly better after my miserable migraine on Sunday, the headache is back. I had a bit of a venting meltdown at work — nothing terrible, I was in a “safe space” as they say, and my rant was actually very entertaining for those privy to my unbridled frankness. But as a result, I got a pretty mean headache. So, the migraine is back.

It will be interesting to see if anything shows up in imaging. Considering the way I’ve been feeling, if nothing shows up and my brain looks good, so much the better. I figure that means at my best, it looks great.

We’ll see.

Now to bed.

On-ward.

 

 

 

Getting off coffee — After the migraine subsides

So, this is interesting. I did something to my system over the weekend, and I came down with a horrific migraine yesterday afternoon. It was the worst one I’ve had in quite some time. I’ve had some of those where you go blind in one eye and the world is spinning and you feel like you’re going to throw up, but I don’t remember the headache and weird feeling and light sensitivity ever being as bad as they were yesterday.

Holy crap.

I really didn’t expect it at all. My weekend was going really well. I was cutting back on the coffee and eating a more substantial breakfast of oatmeal and fruit, along with more fruits and vegetables throughout the day, getting more exercise (I rode the bike a long while on Saturday and Sunday and went for multiple hikes in the woods, up to the top of a nearby hill in our local conservation area), and drinking more water. I felt fantastic, with a lot of energy. I also got some roasted dandelion root tea, to try out as a substitute for coffee. I drank some on Saturday afternoon. It was nothing to write home about, and certainly not a reliable substitute for coffee. But it was worth a try. It was in the coffee aisle at the grocery store, after all.

But I woke up to a screaming migraine after my nap on Sunday afternoon. Couldn’t stand the light, head throbbing, sick to my stomach, feeling dull and drugged. Usually my headaches are just there, but this one was intrusive. Holy crap, whenever I moved, it just thrashed me. Up around an 8.5 – 9 on a scale of 1 – 10. I had a bunch of things I wanted to do on Sunday afternoon, but all I could do was sit in a dark room with my sunglasses on, soaking my feet in a hot mustard bath.

I had half a cup of coffee, ate a banana and a piece of chocolate, took a couple of Advil, and drank water (how’s that for performance enhancement?) and I started to feel better. Not as sensitive to light and not as sick. Still not great, but better than I had been. You do what you have to do.

I suspect this was partly about cutting back on coffee… increasing my exercise… changing my diet… and drinking that tea. All that change was abrupt, even if it was in a positive direction. I have a tendency to overdo things out of enthusiasm, and I think this was one of those times. I’m nervous about the MRI, and my anxiety is really rising. So, to calm myself down, I do things that give me the sense that I have some control over my life — changing my diet, exercising, trying new foods, cutting out coffee.

I’ve done some reading over the weekend about migraines, and they can be triggered by a bunch of things, including changes to diet and activity – check, and check. I know that exercise tends to start a headache with me, and I did start to get a bit of an ache while I was riding the bike — both days. But it’s usually just a headache, not the nausea, crazy feeling, and intense sensitivity to light that had me walking around the house with all the curtains drawn and wearing my sunglasses because even through the curtains, the light was too bright.

So, I did a number of things differently than usual, and I learned my lesson. I need to take things slowly — gradually — not dive in head-first, as I tend to do. Impulsiveness plus anxiety equals — surprise!

And not a good surprise, either. Right now, I’m fighting back more throbbing pain, keeping the blinds drawn, and reaching for the Advil. I don’t want to take the Imitrex, because I don’t know what it will do to me, and I have to be “on” this morning.

So, I need to take things easy and make change gradually. Not bombard my system like it’s a machine. As much as I like the idea of roasted dandelion root tea as an alternative for coffee, I don’t think it’s going to do it for me. I think it really contributed to the migraine. After the pain subsided to a relatively simple headache of “4” on a scale of “10”, I tried to drink it again yesterday evening. And the headache started up again. So, even if it’s not the sole contributor, it did not make things better for me. Dandelion is a natural diuretic, and it has other properties, too, that are used as home remedies.  I got some to get ready for my MRI on Wednesday, so I can flush out my system and not be poisoned (too much) by the contrast agent. But I just can’t do it.

Well, better I learn now, than later. That’s for sure. I’d rather get this lesson out of the way ahead of time, while I have the time to rest and recuperate. I have a busy day on Thursday, so I need to not get knocked out by the MRI on Wednesday. Most people don’t have problems with it, and they look at me like I have two heads when I tell them I get sick afterwards, but so what? I know what happens to me, and I need to get ready.

So, it’s plain water and healthy foods for me, thank you very much.

Onward.

Getting off coffee – as quickly as I can

Say it isn’t so

So, my new neuro encouraged me to get off coffee to help my migraines.

Oh, great wailing and gnashing of teeth!!! How can anyone expect me to do away with coffee?! It’s ridiculous. Why would I do away with my last real vice (aside from super-dark chocolate)? It’s the only thing that helps my mood and thinking when I’m dragging — which is a lot — generally within 4 hours of waking up and living my full-tilt-boogie life.

I scoffed at the very thought of it. Give up coffee. Yeah, right. Not gonna happen.

Why would anyone ask me to do such a thing — especially for headaches? I always thought that caffeine helped headaches, since so many headache medicines (including “Migraine formula” versions) have caffeine in them.But apparently, it’s the other way around. It doesn’t help. It hurts.

Here’s how I understand things now, based on what I’ve learned in the past 48 hours.

I found an article over at Lifehacker.com What Caffeine Actually Does to Your Brain and it was kind of sobering for me.

I’ll quote from the article:

Right off the bat, it’s worth stating again: the human brain, and caffeine, are nowhere near totally understood and easily explained by modern science. That said, there is a consensus on how a compound found all over nature, caffeine, affects the mind.

What Caffeine Actually Does to Your Brain

Every moment that you’re awake, the neurons in your brain are firing away. As those neurons fire, they produce adenosine as a byproduct, but adenosine is far from excrement. Your nervous system is actively monitoring adenosine levels through receptors. Normally, when adenosine levels reach a certain point in your brain and spinal cord, your body will start nudging you toward sleep, or at least taking it easy. There are actually a few different adenosine receptors throughout the body, but the one caffeine seems to interact with most directly is the A1 receptor. More on that later.

What Caffeine Actually Does to Your Brain

Enter caffeine. It occurs in all kinds of plants, and chemical relatives of caffeine are found in your own body. But taken in substantial amounts—the semi-standard 100mg that comes from a strong eight-ounce coffee, for instance—it functions as a supremely talented adenosine impersonator. It heads right for the adenosine receptors in your system and, because of its similarities to adenosine, it’s accepted by your body as the real thing and gets into the receptors.

Update: Commenter dangermou5e reminds us of web comic The Oatmeal’s take on adenosine and caffeine. It’s concise:

What Caffeine Actually Does to Your Brain

What Caffeine Actually Does to Your Brain

More important than just fitting in, though, caffeine actually binds to those receptors in efficient fashion, but doesn’t activate them—they’re plugged up by caffeine’s unique shape and chemical makeup. With those receptors blocked, the brain’s own stimulants, dopamine and glutamate, can do their work more freely—”Like taking the chaperones out of a high school dance,” Braun writes in an email. In the book, he ultimately likens caffeine’s powers to “putting a block of wood under one of the brain’s primary brake pedals.”

It’s an apt metaphor, because it spells out that caffeine very clearly doesn’t press the “gas” on your brain, and that it only blocks a “primary” brake. There are other compounds and receptors that have an effect on what your energy levels feel like—GABA, for example—but caffeine is a crude way of preventing your brain from bringing things to a halt.

So, basically, it’s keeping my body from putting the brakes on, disguising fatigue from the receptors that are built to realize when there’s a bunch of adenosine in my system.

That can’t be good, if I’m running out of steam and genuinely need to rest. Basically, it sounds like caffeine is tricking my body into picking up speed, when it should be doing just the opposite.

I kept reading… and when I Googled “coffee neurotoxin”, I came across this article: Coffee, caffeine, performance and you.

I quote again:

Caffeine is neurotoxin alkaloid. It stops insects eating plants. It works by being a very similar shape to adenosine, a nucleotide which is very important in energy transfer and neurotransmission. Adenosine inhibits nerve firing because it prevents the release of excitatory neurochemicals such as serotonin and acetylcholine.

The structure of caffeine as elucidated by Hermann Emil Fischer.

Caffeine settles into the adenosine receptors in the surface of neurons and in doing so, prevents adenosine itself from getting in there. Therefore no receptor activation can occur and the effect is just the opposite. With no adenosine in place to tranquilise the nerve, excitory neurochemicals will be released. Blood vessels constrict in your head and neck, the rate of nerve firing increases, your blood pressure and heart rate may rise and you experience a renewed interest and vigour when it comes to your Excel document.

Your higher cognitive function is now improved. Even what you can see is enhanced. The stimulation of nerves which use acetylcholine to send their messages affects a variety of areas in the body and brain. The visual cortex is one such area and drinking coffee causes an enhancement in our ability to process the shape, colour and location of visual objects.

 So, here’s this neurotoxin getting into my system, pumping me up and cranking out those neurochemicals. It might not seem like such a bad thing, but I’ve also heard that part of the excitory activity actually comes from the body’s defense response to a perceived threat from the caffeine, which some have called a natural pesticide. So, my system is getting a dose of pesticide and going into fight-flight mode to defend itself from this threat I’m introducing on purpose, which then makes me feel like I’m doing better, when it’s really the adrenaline that’s coursing through my veins that’s telling me that.

I don’t actually become better. I just feel like I am.

So, here’s what I take from this whole little 48-hour research investigation of mine:

Caffeine is bad stuff — especially if you have issues with fatigue and TBI. I mean, seriously, when I’m fatigued, I need to rest and recuperate, not push myself through like I always do. That fries my system and makes sure I’m in a persistent state of fight-flight. I know for a fact that that’s no good — it makes it difficult to learn and use higher cognitive functions. And the longer and more intensely I use caffeine, the more I’m stressing my system and whacking it out and jeopardizing my recovery.

In TBI recovery, you need to rebuild connections in your brain and re-learn things your system has (in)conveniently forgotten. Fight-flight marination in adrenaline impairs learning. So, if TBI recovery is dependent on learning, then coffee, tea, caffeine, even chocolate, are all a threat to my successful progress.

I had no idea.

It would have helped, had my neuro actually explained all this to me in a way I could understand. But it really took a passionate raw-food vegetarian fruitarian Australian dude living(?) in Thailand to make it clear. Here’s his expose that started turning things around for me:

Anyway, there it is. More to come on this, but for now,  it’s time to seriously cut out the caffeine.

 

So, my neuropsych HAS been listening…

Okay, so, since 2008, I’ve been seeing a neuropsych for my TBI issues, and for years, it’s felt like they had no idea what I was actually talking about. I couldn’t detect a response from them or much indication that what I was telling them was actually sinking in.

Reading their summary report to my neuro, it’s clear that I’ve been wrong about that. They have been listening, and it’s a pretty moving experience to realize that some of the limitations have been on the side of my perceptions.

They’ve been listening and getting what’s going on with me.

I just didn’t realize it. All along, I’ve been missing that piece. Oh, well. At least I’ve haven’t been erring on the side of unjustified faith. Thinking that my neuropsych has been listening, while they haven’t heard much at all, would be far worse.

So, this is good. It’s a good place to be right now. There is a chance that my insurance will no longer cover these sessions, after the end of this year, so I may be looking at another six months with them, tops.

That will make me very sad. But life must go on.

My head is all in a whirl over this realization. Time to go for a long walk in the woods.

Gearing up to read my neuropsych’s latest report

Hmmm… let’s see what’s in there

So, back in 2012-2013 I had a second neuropsychological assessment done to follow up and see where I was. It’s taken about a year and a half for my neuropsych to actually compile the results. Kind of blows my mind that it takes that long to light a fire under someone, but according to another neuropsychologist I met, that kind of delay is common.

You have to keep pestering people for the results. I had been doing that, but it wasn’t until I lined up this new neuro (who actually knows my neuropsych) that my neuropsych got it in gear and started making some serious progress.

Now I actually have a report sitting on the desk beside me, ready to read. I’m having some breakfast (after my morning workout) before I dig in.

I can’t believe it’s the weekend. I’m starting to feel some relief with the projects I’m on, because in a couple of months they’ll be behind me. And then I can transition to this new team structure they’re creating at work — more collaborative, more social, less division between all the different types of people assigned to projects. They’re putting us all together, which will be interesting. It will also keep me from isolating and avoiding people. And it will keep others on my team from doing the same. Techy people can be … well, strange. We can be very social, yet very private.

Should be interesting to see how that comes out.

I’ve got an interesting day ahead of me. I have some errands to run, but overall, my required activities are limited. My spouse is going away on a business trip next weekend, so we have to do some prep for that. Getting all their supplies together and whatnot.

And I have an interesting week ahead of me, too. I’m getting my MRI on Wednesday morning, to check my brain — especially my cerebellum. I’m doing some research on gadolinium, the contrast agent they’ll be using. The info on gadolinium isn’t great, so I’ve stopped reading it, and I’m concentrating instead on how to detox afterwards. I found some lists of foods I can eat to help my kidneys — lemon juice in water, blueberries, cranberries, grapes, turmeric, watermelon, parsley, dandelion tea. I’m starting to work with my body now, so I’m prepped and ready for Wednesday.

No sense in worrying about it — I don’t have any kidney problems (my bloodwork has always come back looking good), so my strategy is to just beef up my system ahead of time, and take extra care afterwards. A lot of the foods I’m already eating, plus using baking soda (I put a1/2 teaspoon in a big glass of water and drink it most mornings). So, I have a plan.

The week after, I have a visit with a physiatrist, who was recommended so I can check out my neck problems, and the tingling and tics that’s been going on with my face and hands. I know I screwed up my C6 and C7 nerves over the winter — not enough regular exercise — too much irregular exercise. Plus, I’ve hurt my neck a bunch of times in car accidents and other falls. So, maybe they can figure some things out.  At least check me out and see if they can find anything out of the ordinary.

I need to collect some notes for them — descriptions of my symptoms, when they started, history of accidents, etc. I’ll give them an infographic. That will probably do the trick. That’s a good idea. Then I won’t have to explain everything in words.

Anyway, back to this report. According to my neuropsych, I made amazing progress over the time between the two assessments. Phenomenal. I would have to concur. A lot of it has had to do with keeping this blog, tracking my experiences, and also making lifestyle changes with diet and exercise. Now it will be interesting to see what they have to say — which they think is important for my neuro to know.

It will be interesting to see what they’re focused on.

Time to break out the report, cozy up to my cup of hot neurotoxins, and see what’s what.

More later

Onward.

Headache, but it’s fine

This again…

I’m cutting back on my coffee. And on my fats. I’m building up my exercise — and doing a wider variety of things more times a day. Changing things up, so it doesn’t feel so stale.

I’m still getting there — these things take time. I’ve only been turning things around for about the past week, so it’s going to take a while for the changes to show up.

But they will. I’m sure of it.

Headache has been pretty steady for the past few days. I think it’s directly related to cutting back on coffee and also not sleeping very well. I’ve been stressed over work. So, that hasn’t helped, either. But it’s temporary. It will pass.

My insurance situation has been strange. I got my medical sorted out, then I went to pick up my prescription for Imitrex for migraines, and my pharmacy insurance wasn’t working. $235 for 15 pills. Yeah, no thanks. So I made some more calls yesterday, got bounced around a bit, and finally got a call in the afternoon that everything had been sorted out. I stopped by the pharmacy on the way home, and they told me that because the details of my prescription had changed, I was going to have to wait another 10 minutes for the pharmacist to sign off. I told them I’d just come back the next day, which I’m going to do later today.

All this is just one more reason why I’m not a big fan of meds. It can turn into a management issue, which just complicates my life and messes with my head. For folks who get a lot of benefit out of them, with life-threatening conditions and chronic conditions that make their lives miserable, I’m glad meds exist. For folks who aren’t in dire danger, though, it can seem like more trouble than it’s worth.

I’ve been through the try-this-medication-and-see-if-it-works adventure before — about 25 years ago, I had crippling joint pain and had a ton of diagnostics done, as well as some powerful medications. None of it actually rendered any real results, and I just turned my life upside-down for nothing. The doctors couldn’t get a clear picture of what was happening with me, and they couldn’t find something that worked. At all. Waste of time and money and a whole lot of hope.

Only when I took matters into my own hands and started moving and stretching — against doctors’ orders — did things start to clear up for me.

Ultimately, I believe what was really wrong, was that I was too sedentary, I was doing a lot of walking in leather-soled shoes on hard asphalt and cement sidewalks, and I wasn’t eating right. I changed those things, and my condition improved. Plus, I quit smoking.

Now I’m in a similar situation, where I’m in a fair amount of pain on a regular basis, and I need to make some changes. I’ve got some progress happening for one of my most important projects, which is exciting — almost beyond words — and I’m really very clear about what I’m NOT going to do with my time, as well as what I AM going to do with myself. I’m simplifying my life, and it’s good. The money situation is getting sorted out, and I’m making some dietary changes that I’ve been needing to make for a while.

Basically, I’m cutting down on the “healthy fats” that I’ve been eating on a regular basis for the past year. I discovered “bulletproof coffee” last April, and I’ve been drinking my own version of it ever since then. The only problem is, I’ve actually gained about 10 pounds, and my energy is not always what it could be. I have been steering clear of eating a lot of fruits, because of the sugar and the carbs.

But I think it’s time to change that up again and get back into eating fruit again — using it for energy, instead of that afternoon cup of coffee. Getting coffee out of my system isn’t easy, and I’ve got to taper off gradually. And cutting back on the fatty foods is also an interesting process. Fortunately, the sugars from the fruits offset the dullness.

Hopefully they’ll help me get past the headache. I did some research on Imitrex, and it’s pretty powerful stuff. Supposedly it’s a well-established medication from the Triptan family. Some folks swear by it, while others report some nasty side-effects, including dizziness, vertigo, and a heaviness/tightness in their jaw.

I don’t know how I feel about the side-effects. I have to try it myself to see how it goes, but having more stimuli to process is not the sort of thing I want for my system. I already have enough coming in on me all the time. And I’m going to add even more to it?

Hm. Well, we’ll see. I can try it out this weekend and see how it goes. But if it makes me feel strange, forget it. It’s all about cost-benefit, and if I have more stuff in my system, I don’t see how that’s such a great thing. I won’t know till I give it a shot.

In a way, I’m not sure if I really want it to work that great for me. If I end up depending on it to feel good, then I’m not independent and I’ll always have to keep some around, just in case. I can probably strike a balance with it, but even so, it’s one more thing I need to manage, and if my insurance ever doesn’t cover it — like my spouse’s insurance, which won’t cover their name-brand anti-seizure medicine to the tune of $300+ each month (they’re getting their doctor to put in a special request for coverage) — then I’m up the creek with fewer options. I’d rather have options that I can handle myself.

Or just put up with the headaches.

As long as they’re not hurting me. I’ve heard that long-term migraines can cause brain lesions. Great. Just great. But my MRI from 2009 looked great — and this after something like 40 years of migraines. So maybe I’m in the clear. Or these aren’t migraines.

Who the hell knows? All I know is, life is waiting, and it wants to be lived. I’ll figure something out.

Onward.

 

Neuro visit notes – so I don’t forget

So cool… MRIs rock!

So, I had a visit with my new neurologist, and we had a lot to cover. We didn’t have enough time to cover everything — obviously. But I think we made a good start. If this is going to be an ongoing medical relationship, then there will be plenty of more opportunity to discuss and trade information and work out how to deal with the things that need dealing with.

And how to figure out which things actually need dealing with, versus just being annoying little irritations that are inconveniences, first and foremost.

I need to get off on the right foot. And now that my regular PCP is probably out of the picture — I was told they were out for a medical issue, a few months back, and now I got a call from their office telling me I need to reschedule the physical that was scheduled for tomorrow. So, I think they might be sick. They haven’t been happy at that practice for years, and I think it just caught up with them.

I really liked that doctor — at the start. They were personable and treated me like a real person. They got lax at the end and didn’t follow through with me on test results, but I still liked them. Then again, it’s probably been time for me to find another PCP for some time. I need someone who’s actually engaged and can deal with me for the person I am. I’m not sure how I’m going to manage this, because I live about an hour away from decent hospitals, so what am I supposed to do if I come down with something or I just need to see them about something?

But I’m getting sidetracked. Back to the neurologist.

I took a list of my biggest symptoms and explanations of how they affect me, what makes them better, the severity of them, etc. My neuropsychologist had sent them an 8-page report on my history and status, and I gave them an additional 6 pages of my own information. I don’t know what my neuropsych sent to them, because they haven’t yet sent me a copy of the report, but they promised to, so…

The neuro was pretty personable, and I talked about the issues I’ve been having — the headaches that are keeping me from exercising… neck problems… the tremors in my right hand and thumb… the twitching in my left cheek. The tremors and twitching are pretty clearly “essential tremor” which is triggered by fatigue and adrenaline — check… and check. I’m usually fatigued, and I’m often adrenalized, especially when I have to keep going from being so tired. The two go hand-in-hand, and now that I understand that, I can take that off my “worry list”.

We talked about my balance issues — dysautonomia, and how it might have something to do with it. I need to look that up. It’s about the autonomic nervous system being out of whack, thanks to — sometimes — a clunk on the head. Considering I’ve gotten a bunch of concussions, I wouldn’t be surprised.

The neuro seemed quite concerned about the dysautonomia thing, and they suggested some tests. I’m really not up for that, just yet. First, the MRI and seeing a physiatrist.

So yeah, another MRI is in order. They want to check the nerves in my neck and cerebellum, as I recall (I think). They took a quick look at my imaging from 2009 (I took the CD with me and they reviewed it — with gusto), and they said my brain looks great(!). With the new headache issues emerging just within the past 18 months or so, they want to have another look.

And there’s that pineal cyst that nobody thinks is a big deal at all, but is worth checking on. As I recall, the size of it is not huge, but it’s also not tiny — it’s 4mm I think (I’ll have to check that), which is the size where people start to take notice. Originally I was told to have an MRI every 2 years to take a look at it and see if anything has changed. Getting contrast agent pumped into me every couple of years is not my idea of a good time — it makes me sick for a few days afterwards — and considering that 40% of the population is walking around with them, I really don’t feel the need to get tested that often.

But it will be interesting to see how my brain is doing, these days.

It will be really interesting to compare to my MRI from 7 years ago, and see how things are going. Maybe things are changing. I’m pretty sure they are. I suspect there’s a lot that’s changed for the better, actually. 2009 was near the beginning of my active recovery, and I’ve made incredible progress since then, so I’d like to see if there’s been a physical change to my brain — in gray matter or white matter or anything else. Then again, maybe nothing has changed. Or maybe things have gotten worse. Whatever. Whether or not it shows in the MRI, my life has improved dramatically.

I will probably get MRIs every 7-10 years for the rest of my life (perhaps more frequently as I age), just to see how things are going “up there”. I have a pineal cyst, so I don’t need to argue with folks or come up with some fancy reason for justification. The neurologist who ordered the MRI in 2009 told me to get imaged every 2 years, so there it is.

Anyway, we also talked about x-rays — looking at my back and neck. I’ve been in a bunch of car accidents and falls where I hurt my neck, so who knows what the heck is going on with me?

We talked about the sensitivities, too… just a little bit, because there was a ton of material to cover. Something about light and noise sensitivities being connected with … something I can’t remember. Maybe balance issues? That’s something I’d like to know more about, from a medical standpoint. I do know that I get better — less sensitive — when I am well-rested (which is seldom, actually). But I’d like to know the underlying mechanisms that contribute to it, so I can take some constructive action.

It’s all about constructive action. I haven’t gotten a lot of medical help in my life.  Either the doctors have been idiots, or I haven’t done a good job of communicating. In the absence of competent medical help, I’ve just been going along with my life, living as best I can. I really needed help from a neuropsych to jumpstart my recovery, and having them to talk to each week has been a significant help. But I wonder if I really need their help in a neuropsychological capacity. It’s more for the sake of having someone to talk to who is just able to have a focused conversation with me without getting all weirded out by my tics and odd behavior.

People can be so unimaginative.

I’ll need to write more about my visit, so I don’t forget. I had a good recap with my neuropsych yesterday, and it’s going to be another week and a half, till we talk again, but that’s the best I can do for my scheduling.

I also need to write this down to recap for myself and get clear on my goals for care. I need to communicate to the neuro that I’m a “lifehacker” who first learns about the root causes of conditions and then crafts a personal approach to them that works for me and enables me to maintain a sense of autonomy and independence. If we end up working together over the long run, I need to level-set up front with expectations and such. Or that may not happen for the long run, because my great insurance will change at the end of this year, and I don’t know if I’ll be able to get adequate coverage to continue with either my neuropsych or neuro or both. So, I don’t have a lot of time to waste. Gotta make the most of it now, while I can.

Well, the day is waiting, and it’s time to get moving.

Onward.