Before my TBI in 2004, my weekends were a combination of busy-ness and calm. It seemed like I had unlimited energy, and I could pack a lot into each weekend, including studying things that fascinated me and taking long walks in the woods and working in my yard and doing chores around the house and working on my personal projects and cooking a nice supper.
Yesterday, I did two of those things – a few chores around the house and yardwork. My lawn desperately needed to be mowed. I had not taken a mower to it in over a month. The grass was high. But perhaps waiting so long was for the best, because at the beginning of the summer, huge patches of grass were gone, thanks to grubs. I’ve had grub problems for a number of years, but this year it was particularly bad, with much of my front yard bare patches of dirt. I can’t use any pesticides on my lawn, because I am on a well, and I don’t want it getting into my drinking water. Plus, I tend to spaz a little bit, when I am handling poisons and dangerous objects. I have sudden spasms that make me jump, and then I hurt myself or get the chemicals on my hands or on my face. Not good.
So, I looked around online and found a recipe for mixing mouthwash with alcohol and water and laundry detergent, and I sprayed the grubby patches liberally. Then I put down grass seed and watered it a little bit, and let nature take its course. Within a month, I had a lawn full of thick grass, which I just let grow, to get its root system in place. I didn’t want the grass to have to put a lot of energy into regrowing the blades, and use more of its energy for growing roots.
So, I let it be. And the results are pretty danged good.
No more bare spots.
Of course, yesterday I was sure I’d wrecked my mower a couple of times, as it stalled on the thick, high grass. It must have stalled at least 5-10 times, and each time I wasn’t sure it would start again. But it did. And I was able to cut my lawn relatively even, in the end. I’ll need to make another quick pass today, but I got the job done as I could, under the circumstances.
No 8-inch mohawk.
I also did some cleaning around the house. My spouse has mobility issues, so they can’t do a lot of cleaning, so that falls to me. I did a thorough wipe-down of the half-bath downstairs, and I cleaned the grungiest parts of the full bathroom upstairs. I was seriously low on energy, yesterday, but I did get something done. I also did some more organizing in my study — to the point where I’m comfortable being in the room again. It’s been so messy for so long, I haven’t wanted to spend any time here. That’s different, now, though. And I’m much more comfortable here than I’ve been for quite some time.
I also have more ideas for how to better organize it – I have the right sized boxes that I can slide under my bed to keep a lot of my books that I don’t want to look at anymore. I don’t want to get rid of them. I just need more space. Having those boxes gives me more options. And I can use more options.
The question is – and book-lovers will totally get this – which books do I put away? They are all my “friends” that have special memories associated with them. I’m not sure I want to make those memories disappear from sight.
Alternatively, I could get bigger bookshelves for my study. That might be a good idea.
Book decisions aside, today I am focusing seeking calm. Chilling out my system, so I can relax. I have been pretty uptight for the last couple of weeks – partly because I’m back to helping my spouse with packing and planning for their events every weekend, which can be pretty stressful for me. It’s putting an even bigger load on my system than usual, and I need to find ways to offset that. Things like getting back into my sitting practice… making sure I stretch… getting out in nature when I can… and keeping their crazy-nuttiness from affecting me.
I’ve gotta work on that “CN (Crazy-Nuttiness) Defense” pretty actively. Because it’s really all around me. CN is around me at work, it’s around me whenever I interact with other people. And if I’m not careful, it drives my blood pressure up, which gives me a headache. I’ve been getting more headaches, lately, which is disappointing. But it also shows me that I need to take corrective action.
After all, I can’t expect the rest of the world to accommodate me. And if I know what to do, to keep myself healthy and safe and sane, then it’s really on me to do just that, whenever the situation calls for it.
I also need to be mindful of those times when I am tired and out of sorts and I am more likely to respond intensely to something that normally wouldn’t bother me. My spouse has a habit of starting really energized conversations about good experiences, and then when the conversation is just about to conclude, switching gears to be critical or find fault or start getting really negative about someone or something. They don’t see it as negative – they get a big energy charge out of it. But to me it just sounds like they’re exhaling smog, and I start to choke on it.
I know why they do it – neurologically, they rely on a “negative” charge to get their adrenaline going, so they feel more alert. They are feeling good when they’re talking about good things, and when they start to run out of energy, they resort to negative criticism and adrenaline to “keep the party going” — predictable standard-issue behavior for them.
And if I’m tired (from the animated conversation we just had), I get really angry and upset when they start being critical and talking about behaviors and choices I don’t agree with. It’s insidious — and it always catches me by surprise, just how quickly they can change gears. And it’s a sign of their cognitive issues that they do this — which makes me even more upset.
End result: migraine.
So, I need to step away and catch my breath, slow down my racing heart and calm down my over-wired system. I have to get away from them as soon as possible, so I can breathe freely again… and when I’m calm, I can come back, but not before. Sometimes that takes a while. And that makes my spouse very anxious. They see it as having to do with my brain injury, rather than their own cognitive impairment. Their perseveration seems completely justified to them, and it makes me physically ill to think about what’s causing that — and how they’re not doing all that much to slow down the process.
Cerebrovascular dementia is not much fun. Especially watching it happen to someone you love who is unable to help themself deal with it. Add to that panic-anxiety issues, and it makes it all but impossible to discuss. And if you can’t talk about it, you can’t figure out what’s really going on — and you can’t do anything about it. It’s so critical to control your blood sugar and your moods, so you don’t “blow out” your system. Long-term elevated blood sugar compromises the vascular system. And high blood pressure puts additional strain on an already weakened system. NONE of this is good for the brain.
My spouse also believes that they only have a few more years to live, so they are putting a lot of pressure on me to travel with them before they die. I don’t have a million hours of vacation saved up, so there’s only so much I can do. It’s actually the pressure of them constantly talking about where we’re going to travel and when and how we’ll do it, that weighs me down.
It may be a vacation for them, but it’s an awful lot of work for me. They don’t see it, however. All they see is what they want and how they can get it. Nobody else really matters that much to them, when they’re locked on the target of getting what they “need”.
I have a feeling I’m going to be blogging about my spouse’s decline a good deal, in the coming years. It’s ironic that, no sooner do feel like I’m back on track with my life and I feel like myself again, than my spouse begins to decline. But it does put me in a better position to A) respond appropriately to them, and B) try to educate and raise awareness with others about what the deal is with stroke, vascular dementia, diabetes, and how they all conspire to ruin lives.
Bottom line: Diabetes weakens the vascular system. It weakens the walls of the blood vessels over time. Unregulated blood sugar can make you get crazy about little things, which drives your blood pressure up. That doesn’t bode well for blood vessels that are weakened. And since the brain has so many, many blood vessels, it’s one of the first places that things start to break down, small bleeds happen, cells die, and your cognition gets f*cked. Lack of exercise doesn’t help. The body needs to be moved and challenged to stay strong, and it also needs exercise to clear out the gunk that builds up from stress and other environmental “pollutants”. So, if you don’t ever move, your body isn’t going to get the movement it needs to keep healthy. And if you never move, you can’t keep strong so that you’re able to keep your balance — that puts you at risk for a fall, which may include a bone break or a TBI. None of this is good.
But I’m getting off a tangent. More — much more — on that later.
Anyway, like I said, I can’t expect the rest of the world to accommodate me. Life will run its course. I just need to find calm in the midst, find ways to keep the joy in the midst of others’ pain… to keep calm in the center of the storm. My own internal life is my own space – and that is the only space I have any control over, whatsoever.
I need to make a point of taking very good care of myself. Take my dose of “Fukitol” and head for the great outdoors. Or, if I have to stay inside, keep that mindset of being outdoors and not really giving a damn about what other people do, say, or choose to do with their lives.
That being said, it’s time for a walk in the woods. I do have the energy for that, this morning. No guarantees on what’s happening later today.
Last weekend, when I was recovering from a migraine, I checked my blood pressure and pulse:
My heart rate was up, for some reason (this was just after noontime), and my pulse seemed a little off. 100/59 might seem awesome, but it seemed a little low to me.
So, I did my breathing and checked again:
I was able to bring my heart rate down to 73, which felt better, and I raised my “bottom number” on my BP to 66, which actually felt better. I don’t want my blood pressure to get too low, and I can bring it up with my breathing.
So, I did.
I made the mistake of not checking my bp and pulse while the migraine was setting in. I’ll need to remember that later, so hopefully I can head it off at the pass… before the stabbing pain sets in. Who knows? Maybe I can head off the other symptoms at the pass: light sensitivity, noise sensitivity, sensory issues, balance, dizziness, etc.
In any case, this is probably a good thing to do on a daily basis, no matter how I’m feeling. It might save me a lot of hassle – and it’s definitely easier and cheaper than dealing with medication.
Summary: Controlled breathing seems to be helping me control my headaches, especially my migraines. After years and years of having constant headaches, I believe I’ve found a way to control them. This is good news, because constant headaches are no fun, and they kept me from really living my life.
I’m happy to report: My migraines have been under control – The headache part, anyway. Last week, I had a weird couple of days, where I was definitely altered… very strange feelings, colors brighter and higher contrast, everything feeling like it was moving in slow motion… I didn’t take any meds, because I didn’t have a headache, and I wasn’t actually sure if it was a migraine, or if it was just one of those things that comes up.
I will occasionally have bouts of dizziness (well, not occasionally… more often than that). And I will have my bouts of clumsiness and feeling spacey. Especially when I’m under pressure, feeling emotional, or I haven’t slept, it can be a problem, and with the last days of my current job winding down, all three of those boxes get checked off.
So, I just let it ride. And Saturday evening (after my nap, ironically), the headache set in.
But to be honest, it wasn’t nearly as bad as it has been in the past. Certainly not as bad as when I was cutting back on my coffee and went through that miserable withdrawal that lasted for days. And I actually have been feeling pretty good, without the constant headache. I think I must be doing something right.
The thing that seems to have moved the needle, is that I’m actively working with controlling my heart rate and blood pressure with controlled breathing. I can bring my heart rate down from 93 to 73 in a minute, using my technique. And I practice this on a regular basis, sometimes because I need to, sometimes out of curiosity.
It seems to be helping my migraines.
Now, the thing to be careful of, is thinking that one thing leads to another, when there could be other issues happening, too. I have also drastically cut back on caffeine, which supposedly helps headaches. That’s ironic, because I always heard that caffeine will help a headache, and to be honest, the times when I have been really struggling with the pain, having some dark chocolate or a bit of strong coffee really seems to help. If nothing else, they make me feel human again. I’ve also been exercising more regularly — at the very least, riding the exercise bike for 15-20 minutes each morning, and usually lifting light weights to boot. That could certainly be helping.
The thing is, I couldn’t exercise regularly for a number of years, because the headaches were keeping me from it. Nowadays, I still do get little headaches when I exercise, now and then, but when I do my controlled breathing and relaxation, they go away. Pretty amazing, really.
This is how it goes for me, these days:
Exercise: I get on the exercise bike and ride. I set the resistance to about medium, because I don’t want to overdo it. I’ll bump up the resistance and push myself, now and then, but when I do, I will sometimes get a little headache… which in my experience can turn into a big one — and big problems for the day. I back off on the resistance and check my pulse on the handlebars (there’s a pulse monitor there). If it is really high, I will control my breathing and bring it down. And the headache goes away.
Emotional Upset: My spouse and I have always had a “fiery” relationship. Our discussions sound like all-out fights to people who don’t know us. Our actual disagreements literally make other people run away. It wasn’t a problem for me, when I was 15 years younger (we’ve been together nearly 25 years), but in the past years, I’ve been getting more upset by these kinds of exchanges, and I’ve noticed a connection between the upset I feel and screaming headaches that come on — especially migraines. Sometimes I get so upset, I get an 8-out-of-10 headache (complete with light sensitivity, noise sensitivity, sensory issues, balance problems, dizziness, and nausea) that lasts for days. So, I need to find a way to deal with it. Now, when I get upset and I feel something coming on, I immediately “disengage” and focus on controlling my breathing. Sometimes I will go to a dark room and block out all sensory input. I can usually feel my blood pressure and heart rate going way up… but after a little while (maybe 15-20 minutes) of slowing everything down, I can “rejoin the living” and have a logical conclusion to what was probably a silly argument, to begin with. And no headache to speak of.
It’s pretty cool.
And it’s a relief.
Because now I feel like I can live my life without being in constant fear of headaches and migraine symptoms, etc.
Of course, there’s the other host of symptoms that come with migraine. Like feeling like my left side is carved out of a block of wood. But that’s also diagnostic. It tells me I need to take better care of myself, rest, get something decent to eat, and take the pressure off.
Bottom line is, I figured out a way to manage my migraines, and I’m pretty happy about it.
I had a very taxing day, yesterday. In the midst of telling my manager that I was leaving (and having them freak out, albeit in a professionally muted way), and also trying to get work done, so that I can wrap everything up for folks before I go, I had the constant interruption of people stopping by or sending me messages or emails or whatever, so that they could find out what was up… process… congratulate me… etc.
Everyone has been really great about it. Of course, we’re only in the early stages of grief.
We’ve only gotten to the first stage (though I know everyone handles loss differently, so the order can be mixed up), and I’m expecting anger, bargaining, and depression to ensue before long.
As long as I’m prepared, that’s the main thing.
The issue is, all the interruptions, all day long, the emotion, the storytelling — getting the sequence of things correct, so that I’m telling a consistent story and don’t sound like I’m lying to people — it’s exhausting. Trying to focus, while people are all worked up and want to talk… good grief, it’s tiring. And by the end of the day, I was wiped.
Which is part of the reason I burned supper… then had a minor meltdown when my spouse started yelling at me… then got all bent out of shape about that signalling the permanent end of my marriage, because I just couldn’t take being yelled at when I’d had such a demanding day…
I felt a nasty migraine coming on, and retreated to my bedroom with the lights off and focused on my breathing and slowing my heart rate, to head the migraine off at the pass. It worked. And my spouse came to find me to talk things through because it made no sense for me to go to bed angry. And then I went downstairs and watched “Happy-ish” which is my new favorite show, because there are so many parallels between the main character and myself.
In the end, we finished the evening on a much more normal, loving note. I got a good night’s sleep and woke up to a glorious day. Glorious! as my elderly aunts used to exclaim, when I was a kid.
I miss those venerable elders. I miss them a lot.
Anyway, while reading The Ghost In My Brain, I found a lot of similarities to the author’s experience and my own — the nausea that sets in when people are talking to you… the balance problems… the fact that driving is actually okay, when you’re not cognitively drained (it’s actually a relief)… preferring blurry eyesight to glasses that make objects sharper, but don’t address the full spectrum of vision issues… and having everything be in slow motion when talking, because there are all sorts of additional processes that need to take place in the background, while you’re working through what someone is saying to you… and then there’s the trouble planning.
The author talks about how he had regular appointments with a Dr. Miller to work through daily logistics with TBI, and he was often not 100% sure he was supposed to be there. I used to do that all the time with my neuropsych, for a number of years. I was pretty sure I was supposed to be there, but I wasn’t 100% confident, so I just went — and if I was supposed to be there, then that was cool. If I turned out to be there on the wrong day, I was prepared to turn around and go home.
Fortunately, we always had appointments on Tuesday afternoons, so it was consistent. If it was Tuesday, then I’d go to their office and wait in the waiting room. Sometimes I would sit in the waiting room for quite some time, if I got there a little late. I wasn’t sure if I should go knock on the door, or if they would come out to find me. Eventually, I got in the habit of knocking on the door — the thing is, I now realize, I would avoid it, because it hurt my ears when I knocked. Driving an hour through evening rush hour traffic really took it out of me, so my hearing was on HIGH. I’d just suck it up, though, and knock. The discomfort of the knocking, though, was actually preferable to the auditory shock of hearing their door open suddenly. It always startled me, because they have one of those noise-dampening brushes across the bottom of their door, and it makes a really loud noise when it opens.
At least, it’s loud for me.
Anyway, all the discomfort aside, I’m considering following up with a neuro-rehabilitative optometrist to see if I actually have vision issues that are making my symptoms worse. After I was hit in the head with the rock when I was 8 (a year earlier I’d fallen down a flight of stairs and temporarily lost the ability to speak), I developed double-vision (diplopia, I think it’s called). I was taken to an eye doctor who prescribed reading glasses, and I’ve worn them ever since.
In recent years, I’ve actually opted for not wearing my glasses whenever I can. It’s more comfortable for me. My glasses help me see things in the distance just fine, but I prefer to do without them. Sometimes I will even drive for short distances without my glasses (if no one is around and the road is empty and runs straight ahead). I have been thinking it’s because I just can’t stand having them on my face… but now I’m wondering if maybe they are actually making it harder for me to see, because they are not allowing my eyes to get the kind of light I need to get.
Reading The Ghost In My Brain, I am finding so many similarities — especially with how vision and balance are so closely connected — that I think it makes sense to follow up with my vision. Just get my eyes checked out for that other aspect. Apparently, there are three ways our eyes help us — regular straight-ahead vision, peripheral vision, and then connections with sleep-wake cycles, balance, hormones, neurotransmitters, posture, etc.
And I wonder if maybe so many of my logistical problems — which I have never been able to articulate well to anyone, because they make no sense to me or anyone else — might have to do with vision issues. From the time I was 8. So, for over 40 years. If this is true, and my visual systems have been impacted, then it makes a lot of sense why I perform so high on visual-spatial tests. I’ve had to develop more abilities to offset the deficits I got from those TBIs. Add to that even more blows to the head, and you’ve got yourself quite a recipe for a very interesting life.
Additionally, I’m looking into the Feuerstein Method, which is a way of “learning to learn” — finding your strengths to offset your weaknesses, and restoring functionality that I really need to have, but which has eluded me.
My neuropsych has been incredibly helpful to me, in terms of helping me sort through all the psychological clutter, helping me retrain my executive function and beefing up my gist reasoning. The thing is, they take that approach, which is psychological, and the physiological aspects fall by the wayside. At least, that’s how it seems to me. And anyway, I do a really poor job of communicating everything that’s going on with me, at times, because I have a long drive to get to them, at the end of usually challenging days, and I’ve been so stressed out over the years with all my old sh*tty jobs, that I haven’t had as much bandwidth as I’d have liked to.
I do a danged good impression of someone who’s got their act together. Because I have to. If I don’t, I can lose my job. I can lose my house. I can lose everything, and my spouse will lose it all, too. So, keeping up the appearance of being on top of everything is my top priority.
Of course, that can backfire, because then you can’t always reveal the areas where you need help, when someone is there to help you.
But anyway, that’s another blog post for another day.
Right now, I’ve got some new lines of inquiry to follow, and that’s super cool. I also have some exercises I can do to help me — Designs for Strong Minds (the site of the rehab person who helped Clark Elliott retrain his brain) has a bunch of exercises at http://www.dsmexercises.com/, and I went ahead and paid the $13.99 for the full suite of exercises. It’s easier and quicker than trying to piece things together for myself. Plus, it’s a deal, because individually, the collections of challenges are $9.99 each.
Even the most basic ones pose some issues for me, although I’ve been scoring 87% or better. A number of my choices have been lucky guesses. I won’t be happy until I can score 100% without doubts. Then I can move on to the next batch. There are exercises for NASA rocket scientists, and other pattern matching things.
And that reminds me about my Dual N-Back training I used to do regularly. I need to try that again. I was doing Dual N-Back training when I was learning to juggle. Now I know how to juggle, and I wonder if my Dual N-Back training is “sticking” as well.
New tests for a new day.
Interspersed with lots of rest.
I’m pretty happy about the progress I’ve made in my life, relative to where I was 10 years ago. Relative to where I believe I could be — and should be — I’m not happy. I know I can do more and I know I can do better. Getting there is the challenge.
And it finding out if I have vision issues that can be fixed, could be an important next step.
So, if migraines are vascular — as I’m told they are — and (in my case, anyway) they develop when my heart rate is elevated… then might it be possible to manage them and calm them down, by managing my heart rate and/or blood pressure.
Interestingly, my blood pressure doesn’t seem to bring them on when I am exercising. It’s when my heart rate gets up there. Fortunately, this hasn’t happened in a while. My headaches have been pretty chilled out, actually.
Perhaps due to cutting back on coffee, as well as stretching more.
Anyway, I’m really practicing lowering my heart rate, as well as my blood pressure, on a regular basis. And it seems to be helping.
Just this morning, there was an early knock on the back door — really loud. It startled me, because we rarely get any guests who come to our back door. And the knocking was really loud. I wasn’t yet dressed, so I threw on some clothes and ran downstairs. My heart was pounding — it was still early, and I wasn’t yet warmed up for the day.
Turns out, a workman had the wrong house. He was nice enough, but my system was still on hyper-alert. And all of a sudden I got a splitting headache.
After I pointed him in the right direction, I went back upstairs and did my controlled breathing. That throbbing behind my eyes was starting to set in, which worried me. So, I breathed slow and steady. My system was full of adrenaline — ready to fight — and I needed to back it down. I checked my heart rate and BP, and my BP was fine — 110/76 or thereabouts. My heart rate was 109. And I know it was going faster than that, when I was running downstairs. I did some more breathing, and my BP stayed about the same, while my pulse went down to about 97. Progress. I put away the blood pressure cuff, and just chilled out, breathing slowly and steadily. Before long, the headache subsided from an 8.5 to a 5… and it’s been slowly decreasing since then. I imagine breath filling my head, expanding gently and then washing the pain away… and it seems to help.
So, for now, I’m hopeful that I can eventually clear the headache and just have a good day.
I’m supposed to get the offer letter for my new job today, and it’s pretty exciting. Then they will need to get me into the system and finally approved (probably with a background check), and I can give my notice by the end of the week.
Then the final countdown starts… and the transition to my new chapter in life begins.
Basically, my BP went pretty low, while my heart rate is up. That has interesting implications for the whole headache thing, because if migraines are triggered by high BP or vascular issues, then if my BP actually goes down while exercising… WTF? Why the headaches?
It may be moot, because I can actually control my heart rate with controlled breathing, but it’s still a conundrum.
In related news, I tried Ruckpack the other day, and on an off chance, I checked my blood pressure within an hour after I drank it, and my BP was108/46 with a pulse of 64. That is very low for me — especially the 46. So, I did some controlled breathing and got myself back to 113/56 with a pulse of 59. I wonder if Ruckpack has that effect on me — I’ll need to do another test.
Anyway, I’m running late for work, and I have a lot going on in my head. Lots to think about. Lots to do. I had a restful weekend, overall, and I’m looking forward to this week, with only two standing appointments I need to keep. Sweet.
I’ll need to do some more experimentation on Ruckpack. Buy some more and see where it takes me. It could be I can’t tolerate it, and if so, it might be good to let those folks know about the effect it has on me. Because it might have the same on others.
Then again, I am an odd creature at times, so I’m not one to judge the rest of the world by.
I re-watched an old Shark Tank episode where a Marine (former Special Ops) was pitching his energy drink Ruckpack.
One of the big selling points for him was the caffeine-free formula that did not produce jitters.
When I first saw it, I didn’t need a caffeine-free solution for my own personal energy crises. But now I do. Based on what the Marine said, this might be just what I’m needing.
I found a store that carries Ruckpack, and I picked up a couple of bottles (the caffeine-free mix), just to see. Today is a long day – I started at 6:00 a.m. with a support call for work, and I will be going till10:00 tonight, at least. I have meetings all day – booked solid from 9:00 a.m. till 4:00, when I need to drive an hour to my neuropsych for my weekly appointment. Along the way, I need to run some errands. And then I have a networking meeting in the evening.
So, I will need some extra help today, most likely.
I’m going to try Ruckpack to see how it works. If what they say is correct, that it provides steady energy and nutrients “for every battle”, and it does so without caffeine, then this might be something I can actually use.
I’m going to wait till later this afternoon to try it. I’ll report back.
If it works for me, it might work for other folks struggling with mental fogginess / TBI / headache / migraines, who have to steer clear of caffeine, as well.
I’m doing my leg lifts a little differently this morning. I’m going slowly, and I’m not holding onto something for balance, unless I need it. I’ve been having balance problems, lately. Or rather, my usual balance problems have been more of a problem, lately. I’ve almost fallen a number of times in the past few months — while standing up from a table and having to catch myself before I hit my head on the table and/or a nearby chair and bookcase… while starting to walk down a flight of stairs… even while just standing.
So, after talking to the neurologist and my neuropsych and making an effort to notice when I’m dangerously off balance, I’ve realized this is actually an issue. And I need to get it checked out.
So, I’m going to get some autonomic system testing done. I know that it’s been an issue with me, lo these many years, and I need to collect some actual data about it, rather than relying solely on my own observation — which tends to be spotty, because of my Swiss-cheesey memory. If I don’t write things down, it’s like they never happened. And I can’t always take the time to write everything down.
It would just start to get a bit hypergraphic, methinks.
Anyway, over the weekend, I also took some Sumatripan (generic Imitrex), which did knock out the migraine I felt coming on. But it also left me feeling drugged and dopey. I felt “off” all weekend, like I had chemicals in my system. It wasn’t like I was looking for that. I will take meds when I have to. The thing was, I was definitely feeling “synthetic” for a few days. Monday I started to feel better, but Sunday it was like I was in a druggy fog.
I can’t remember if I took the migraine meds before or after I had my dizzy spell, but as it turns out, dizziness is one of the reported side-effects of Sumatriptan. And when I looked at the list of side-effects with my neuropsych yesterday, it turns out that it’s probably not a great idea for me to be taking it, due to possible effects on my autonomic system.
See, here’s the big issue I have with meds: They are dispensed from on high, and unless I have access to someone with an advanced database of indications and contraindications, as well as sensitivity to my situation and an understanding of how things might affect me, I’m pretty much a guinea pig for finding out what’s going to happen with me. And doctors (in my experience) routinely prescribe things that they don’t fully understand. They figure they’ll have me try it out and see — essentially turning me into a science experiment.
I’m extremely sensitive to medications, but nobody seems to take that seriously. Meds disrupt my attention and concentration with the feeling they often give me. Unless I am completely laid out by illness, such as bronchitis or some other major infection that I can’t fight off on my own, the cure can be worse than the illness it’s supposed to fix.
I need to figure things out up front as much as possible, not just find something that’s worked for other people, give it a whirl, and then have my life disrupted by exciting discoveries.
Not when I can take another route to dealing with things.
So, as for the autonomic testing, both the neuro and the neuropsych are thinking I could take a pill to deal with the situation. Please. Another medication? If there is any way on God’s good earth that I can find another way to strengthen the underlying structure of my system, and build myself up that way, I’ll do that. I mean, seriously. Say I do go on a med for my balance. Is that going to help me strengthen my body to maintain balance better? People often have falls — especially later in life — because their systems are weakened, they don’t have the muscular control to catch themselves, and their reactions are slowed. If I use a pill to fix my issues, then where is the incentive to strengthen the underlying “framework” that keeps me upright?
The direction I want to take with the autonomic testing is NOT pharmaceutical. It’s structural. I don’t want additional chemicals coursing through my veins, when I can offset the issues I have with strength and balance exercises, eating right, and getting adequate rest. I need to approach this systemically, not have an intervention which may actually weaken me.
It’s pretty irritating for my neuropsych and my neuro to be so pill-happy. I’ve been on this rehab quest for about 7 years now, and my neuropsych says they’ve never seen a recovery like mine. Okay, out of all their other patients, how many of them are on medication? I’m not. I refuse to be — especially for things that I can address and strengthen myself — or compensate for (by strengthening other aspects of my neurology).
It’s frustrating and alienating for them to be so eager to prescribe meds. Maybe they just want a quick way to relieve suffering. That impulse is noble, but the pharma aspect of it doesn’t sit well with me.
Anyway, we’ll see. I know where I stand, and I can’t let them bring me down.
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.
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.