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Currently (2020) my most updated blog is pinkfeldspar.

Spaz is a useful side blog for sorting other stuff out.

Monday, February 22, 2016

when I'm alone with my demons- pain spikes, PTSD, and anxiety attacks

I've been talking about some of this stuff on Pinky blog, but this one is super long and just needs to go back over here.

So last Friday morning was the MRI bright and early, and as per my monthly epic fail quota, I missed calendar syncing it on all the calendars around my house, so good thing I actually compulsively opened my pocket planner for a quick confirmation, prompting an abrupt charge out the door just in the nick of time.

~Blood-y-HELL~ blogger just took it upon itself to try publishing this already. wtf, dude, I'm not done yet.


Ok, so anyway, squeaked into my MRI right on the dot, thanx to @bonenado's awesome driving skillz, and then listened to 50s music for 20 minutes.

Reality check 1- The ear plugs did NOT say latex free on the package, and there's no way I can lay through that noise going way past full blown autie sensory overload, so I calculated that I could get through 20 minutes of ear plugs on the zyrtec I'd taken and then start slamming benadryl afterward if I came out with my cheeks all red and puffing up, so going in the tube first thing with anxiety on top of the claustrophobia, rightonrighton. I'd taken a whole xanax, thank goodness. I did take benadryl afterward, but had very little in the way of skin reaction. This is a big deal since I have to wash my hands after I put on my athletic shoes, and the last time I was in a shoe store I wound up in ER and the last time I had shea butter in PT my entire back turned a nasty neon pink. Latex allergies are super real, and it's everywhere. Anyhoo, I choose 50s music because the songs are shorter and I can count them. I figure 10 songs max, this time it took 8. Aspienado does a lot of counting during medical testing. The countdown is the only thing that keeps me from pushing that little button. Oh, and I no longer do contrast. I once had contrast reaction in the tube, and they didn't pull me out while I was begging to be pulled out. Yeah, what's the point of telling a claustrophobic there's a button if they ignore it during an actual reaction. My skin was on fire from head to toe like I was really burning, and by the time they got me out of there I was a weepy mess. I am so very lucky that reaction wasn't worse. Back in 2008 I was ignored, well, nowadays they are required to put a reaction disclaimer in every room where you change into your little gown. I don't do gadol any more, thanx. Anyway, you can see that only added to the overall anxiety problems, right?

Reality check 2- Laying rock still for 20 minutes in an uncomfortable position under duress triggers fantastic pain spikes for several days, no matter how much sedation you're on. Fibro blows up and then goes into full spasm lock mode, nerve trunks and nerve centers light up like it's Black Friday, and there is absolutely nothing any more I can take to make any of it stop or even slow down. I just have to grit my teeth and keep myself distracted and busy till it all calms down again. A simple 20 minute MRI can affect me for days.

I've talked about anxiety and PTSD, and y'all know I'm home alone 12 hours a day, so I thought Hey, why not share how I deal with this? Because I'm not popping pills and calling people, right? So this is Aspienado's tutorial on how I get through a major anxiety spike, like I'm having this morning.

There are nerve centers in your back under your shoulder blades that can trigger upward and wreak havoc, sometimes resulting in nasty headaches or wild lightning pain spikes shooting around your torso in various ways. I've learned over many years that the worst of this lasts about 20 minutes for me and then starts ebbing, so once it kicks up to the top notch, I just hafta get through 20 minutes and then coast down during the rest of it, which can take anywhere from another 20 minutes to several hours. BUT, that first 20 minutes is pure hell, thanks to a big chemical dump on my nervous system.

I used to go to ER. During that first 20 minutes I mimic every symptom of heart attack and stroke, and I've been through the whole EKG, CT, x-ray, holter monitor so many times that I finally decided the only way I might ever be able to tell if I'm really having one is whether I'm still able to easily breathe, so that's the first thing I do, take a deep breath and ignore the pain spikes that rip around my ribcage, because fibro of the chest wall is a real thing and can be easily confused with other real things like pleurisy, which is also exquisitely painful. (Don't ignore this part in case you have a blood clot in your lung, women on birth control, especially smokers, are high risk for that.) So I'm breathing ok, I can walk without gasping, so the next thing I do is get a big drink of water and make sure I've taken my pills correctly for the day. Hydration is pretty awesome, and missing pills can get pretty stupid.

After that, if I'm still walking around breathing ok without any dizziness or something else taking me down, I go through all the motions of getting ready for work, like I used to do in the old days. It's amazing how focusing on obsessing over brushing and flossing your teeth can actually help get you through part of that nasty anxiety attack. It's not only useful and healthy, but after the anxiety comes down you have fresh breath. Hey, I'm not laughing, this is really real for me. I brush my teeth a LOT, and guess what- I don't get cavities, and I've only ever had one root canal in my whole life. (Imagine the anxiety that'll save you at the dentist!) I'm not saying brushing your teeth saves anything if you're genetically inclined for something like receding gums (that's a real thing), but it's still useful. And you can think of other things instead of thinking about dying while you brush your teeth, like how you never see actors with less than glossy teeth, and then you wonder what sort of regime they must go through every single day to always have such clean looking teeth. By the time I'm done drinking my glass of water and checking my pills and brushing my teeth, I've made it through at least 4 minutes of the worst part of the anxiety attack. If you're not taking that long, go back and floss! Doing a crap job won't make the anxiety attack any shorter.

Next is clean clothes. Just strip off, start all over with deodorant and a washcloth and fresh clothes, and then brush your hair. I can't do makeup because allergic (thank you nuts and citrus and the word 'bright' in cosmetic sales), so sometimes if it's really bad I look for weird little hairs to tweeze or something. If I find myself getting lost in that, I know I'll be fine, but sometimes it's just really bad and I can't stand there and have to keep moving.

So after that is getting shoes on, even if I'm not going anywhere. I get my shoes on, make sure my bugout bag and epipurse are stocked, and if I'm not doing any worse by then, I start walking mini laps around my house. I have one of those houses where you can walk from room to room around in a circle back to where you were, so that's my racetrack. If the anxiety is still spiking, I hafta kinda hold myself back a bit so I won't load more heart work on, because anxiety is already stressing cardiovascular, right? But a steady walk usually helps. Sometimes just 5 or 10 minutes of relaxed walking does the trick, and while I walk I can continue to assess how I'm doing or distract myself thinking about other stuff. Sometimes I pick up the house while I walk the racetrack, start a load of laundry or a load dishes soaking, and I've actually been known to come out of anxiety attacks with a cleaner house. Srsly, all the time, guys. I live like this. It is getting better over time, but for a number of years it was pure hell nearly every single day.

During all this, I'm usually dealing with random nasty pain spiking out from the nerve center under my left shoulder blade, damage that goes back to a bad car accident and virtually unreachable in physical therapy. I have a special stretch I can do for a particular muscle that runs underneath, but beyond that, it's all a waiting game. Laying still in an MRI for 20 minutes really sucks to trigger that nerve center for several days, and this morning (3rd day out) is hopefully the last big gasp before it lets go in there. There's nothing like a pain spike to trigger an anxiety attack, and when your pain is unfocused and vague and running along nerve pathways, it's really difficult to tell whether it's something immediately life threatening. Stay off WebMD while you're spiking pain through anxiety attacks. When in doubt, just call 9-1-1. You won't be able to tell if your anxiety attack is ebbing if you keep triggering it with more fear. Just saying. Years of experience here.

My pain spikes travel along nerve pathways, and the word for it feeling like lightning is Lhermitte's. I still have no evidence of MS (they've been checking for years) and a rheumatologist once told me I perfectly described Lyme (I tested positive as a carrier and it's known to neurologically affect people for years, but my doctors still ignore it as causative of anything current), but I did get a solid Lhermitte's notation from a pain specialist in a surgical center several years ago. (A couple of people I know who've had shingles say it sounds like I've lived in continual shingles-like pain most of my adult life, so there you go if you need context.) I go through stringent medical assessment every little bit, and so far the best we can do is 'pain disorder' along with fibromyalgia, although I did finally get a trigeminal neuralgia note in my history, which I'm pretty sure started with being thrown out of a vehicle. Anyway, I'm always very glad they never find any hard evidence for why the pain spikes happen, but that doesn't make it less real, and my medical team in the Mercy system is very sweet to help me find ways to handle living like this.

Anyway, the point is that it doesn't take much to trigger pain and stress, and then it doesn't take much for those to trigger anxiety attacks and PTSD, and then it's all about getting through that horrible surge of fight of flight gripping you when a bunch of chemicals very suddenly dump into your bloodstream without any warning. One thing I've learned to do is check my blood sugar. You'd be surprised how often anxiety attacks follow on the heels of a glucose spike when you're diabetic. I'm not saying glucose spikes cause anxiety attacks, just saying a carby meal can sure make them worse if you are prone to them and have diabetes. Lots of experience here. Don't eat a bunch of sweets for breakfast, ok? Eat proteins and healthy fats so your body can work through that anxiety attack more efficiently.

During the anxiety attack your blood pressure can go nuts, too, and I've learned to NOT check it, because it'll be scary and then go even higher. My highest recorded is 230/115 or something like that. I know someone who's gone higher. If your blood pressure popping freaks you out, you can call 9-1-1 and they'll get you on oxygen and sometimes IV, spray nitro under your tongue, and by the time you get to ER it'll already be coming down if there's nothing else going on besides the anxiety attack. I've done this so many times. Local ambulance noted I'm a frequent flyer several years ago, and as insurance and medicare really don't like picking up that tab, I am doing better and better about getting through these nasty 'panic attacks' all by myself because I'd rather spend what little money I have on food and tech and stuff. Remember, I'm home alone 12 hours a day, and I'm way out of town. Most of my neighbors (I have 3 close by) are gone during the day. It's up to me to learn how to deal with my stuff. Yes, I have actually learned how to prioritize having anxiety attacks so I don't have to deal with the added fear and guilt that comes with how much money they cost, although some people do the opposite and drop dead at home because they don't think it's worth finding out nothing's wrong, so don't be dumb about it, ok? There really are people out there going to ER every day during bad PTSD months and others that eventually get found alone in their houses, so- moderation. You don't have to assume something is wrong or not wrong, all you have to do is NOTICE THE PATTERN.

It takes time. Keep notes. Look at the clock, notice how you feel, write it down, look back at the clock in a couple minutes, notice how you feel again, write it down, and do this every time you have an anxiety attack. It didn't take more than 5 of them for me to realize I actually have a pattern. Some people have different patterns. After noting my pattern- 20 minutes of hell followed by 2 to 4 hours of misery but lessening fear- I began noting events leading up to the anxiety attacks going off. I have figured out several trigger events, and that some of them aren't even true anxiety attacks! Some of it was actually food reactions, imagine that. Stop eating something, fewer anxiety attacks. I can't eat a lot of potatoes. I hold back on them anyway because I'm diabetic, but guess what- people with latex allergies are supposed to be weary of potatoes. Wild, huh? So if I eat a half a baked potato once a week, I usually eat one of those chewable children's benadryls with it (I also take a zyrtec once a day), and I don't seem to have that problem. Sometimes I need a little benadryl when I eat a big salad. During peak allergy seasons, my higher histamine levels seem to make me more food reactive, and if I'm not paying attention, it feels like I'm having an anxiety attack, when really it's a food irritation.

And then there are stress triggers. I'm extremely triggerable. I avoid so much stuff to avoid either weeping all day or going into massive anxiety attacks, including entire radio stations, most of the facebook and twitter people I follow, nearly everything related to news updates, pretty much anything that triggers me emotionally. (This was way worse on muscle relaxers and other meds that can affect mood. Getting slowly cleaned off meds helped me a LOT with the continual trigger thing. Please remember I did this under supervision from my doctor and a psychologist, and then it had to be approved by a psychiatrist, which took another year. Supervision is key. Be honest with your medical team and trust them to really help you.) Once an emotional trigger hits me, I just toss off the rest of the day, because I generally don't recover from that kind of trigger, and if I don't want to wind up having anxiety attacks, I have to just ignore everything and everyone and stay busy writing or cleaning my house or whatever. Nowadays it's minecraft, thank goodness. We've all noticed it's getting worse as I get older, and I think it has everything to do with progressive nervous system something going on, because I've been dealing with nervous system problems since my 20s. Call it Lyme or fibro or whatevs, I don't care. There's no cure coming and since it's apparently affecting my brain, all my plans going forward revolve around crash control, every single day, any given moment. I'm "brain training". My number one goal is even if everything else fails, including memory, I want to be pleasant enough for my family to handle being around me, so I'm doing my best to brain train every day toward less negativity, less automatic reaction kind of stuff, more blowing off what I don't get right way, letting go of control issues, learning the ways of automated politeness, anything that will stave off regrets with my loved ones.

My mom went down smiling. She was so brain trained from childhood to keep that mask on that 5 years of nursing home staff never had a real clue just how much pain she was in, because she would only cry for us. I'm very different from her, masks come clattering off and I fight for what I need, especially if the world isn't making sense. I'm looking for the happy medium nowadays, learning how to trust other people to take care of things and look out for me. I was often left to my own emotional and even physical survival as a child, so trust is a huge thing for me to learn.

I think there are lots of people out there like me, caught in between the old timers and the younger hipster gen, and we're confused how to be ourselves and be honest without becoming the legendary crabby old person. We don't want to become what others mock. We watch ourselves losing who we were, not sure who we still are sometimes, knowing we're still important but not sure what to do with it.

Well, this is what you do with it. Share what you've learned. Other people still need us to see how to handle the scary stuff. Getting older and surviving crap isn't a joke, and there are other people following us that want to know they're going to be ok going down this road, too, and there's not a soul on this earth who won't.

You're going to be ok. Go brush your teeth when you're scared. Think about how you never see your fave celebrity with sticky teeth and how it would be cool to have lots of money to blow getting mouth swag. Or something else if that's not your thing.