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Currently (2023) my most updated blog is everlasing.

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

Showing posts with label anxiety. Show all posts
Showing posts with label anxiety. Show all posts

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.


>=l

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.

Monday, August 24, 2015

things that have dramatically impacted my depression and anxiety levels


I know this is going to sound crazy, but I'm a long-time depression survivor, and this is trew.

1- The sudden wheat allergy last year that had me in clinic and 2 ER visits and put me on prednisone for 17 days was a godsend. There's a rumor going around that wheat might be a big culprit in depression. After being completely wheat free for nearly a year now, I can totally vouch for that. I have no idea if it's related to the big Monsanto GMO wheat monopoly thing, but there seems to be some science developing behind it. The severe brain fog I lived with for years is mostly gone, although I still hit walls and have glitchy moments, my memory is getting better again, and my ability to deal with spontaneity and change (I have Aspergers) is getting better again. I don't seem to need as much shutdown time, and I seem more able to steer it now instead of caving to it. I'm not saying the original brain fail was caused by wheat, just that nerve healing (the brain is nerve central) seems to be going a lot faster without it.


2- Regular zyrtec is making it possible for me to drive without delayed PTSD Tourette's behaviors, like tapping my steering wheel because I'm afraid to touch it, or not being able to stop blinking while I drive. I've discussed these anxiety behaviors with a psychologist, because they go back years. I've been rolling down all the windows in the coldest winters over severe claustrophobia while I'm driving, to the point of even pulling out of heavy traffic so I can exit my car before I have a meltdown. I've tried all kinds of meds (highway patrol has driven me home 'drunk' on meds in years past), and all kinds of behavior modification techniques, as you can imagine. (I trigger easily, thanks to being thrown out of a violently flipping vehicle, so it's amazing I drive at all, especially with the pain levels I've had through the years.) Last year I was COMMANDED to stay on zyrtec since my food reactions were going ridiculously more out of control, and I discovered that zyrtec crosses the brain barrier differently than other antihistamines and a regular dose has a very calming effect on me without making me sleepy. I've been able to drive like a normal person and have gotten through a whole winter and a very rainy spring and summer without having to emergency call family to talk me through driving home or constantly send update pix of where I am to facebook or twitter. After seeing such a huge change, I have to wonder how much of my severe anxiety had more to do with a continual overwhelming barrage of histamine reactions than anything. This is not true for everyone.
Cetirizine: actions on neurotransmitter receptors
The Zyrtec Effect
But this may be why it works for me. That's right, they're discovering anxiety (in some people) might be related to histamine over reaction.
Fibromyalgia Trial Shows Promise…For Chronic Fatigue Syndrome? Mast Cells and Ketiotifen in FM and ME/CFS


3- ASTYM treatments in physical therapy coupled with regular chiropractic adjustments have lowered the screaming pain levels on my nervous system more than anything else I've tried in years (and I've tried everything but surgery) and considering I've actually asked a dentist to do root canals on healthy teeth and sometimes think it would be lovely if someone would just severe my spinal cord in at least two places and put me in a wheelchair, my whole life turned around over this very simple technique. Lowering the pain levels dramatically lowered the stress on my nervous system, and that has made dealing with anxiety and depression much easier. There is nothing lovelier than physical therapy where you get one on one personal touch through massage and strength training, which has done me so much more good than medications. At first it was hard because I can't bear to be touched (super aspie + pain syndrome), but over time it became a real life saver. To give you context, it took four years to break through the nasty pain just under my skull because the scar tissue had grown so thick and was creating so much pressure and swelling around my cervical nerves that I couldn't even look up at the stars for years without nearly passing out. The scar tissue was the key- microfissure and slowly rebuild new more elastic tissues, and it works best with regular stretches and exercise. I'm actually sleeping nearly through the night now, after many years of not sleeping more than 2-4 hours through the night, even heavily medicated. More sleep and less pain eases anxiety levels.

I actually owned one of these.

4- I've noticed letting my glucose levels slip up (I'm diabetic) has an almost immediate effect on whether I go into a depression plunge, which is easily masked with meds and distractions that keep me from connecting those dots. Since I don't control with meds (my doctor pulled me off over med intolerance), I must be vigilant and aware of exactly what I'm eating all the time. Since I'm no longer on head meds, I've been able to see how immediate and drastic something as simple as snacking on a couple of cookies is when I haven't had any other food in several hours. My worst anxiety attacks used to come on mid-morning, and after I found out I'm diabetic, it was easy to see the pattern after a typical carby breakfast of cereal, pancakes, french toast, etc. If I don't want to blow the rest of my day on a sugar spike induced anxiety attack and then down a depression hole as my brain and body fold up trying to deal with that, I steer widely clear of anything carby before noon, and only sparingly the rest of the day. I wrote a post a few years ago, Holidays with Diabetes- Easier than You Think, in which I show how a person can still continue to have sweets all day in very small amounts as long as they avoid carb loading, but I've noticed since then that eating like that is like teasing depression all day long until it blows up into anxiety, so I've stopped doing it. If all you had to do to control your anxiety and depression was stop drinking soda and eating donuts and cake and french fries, would you do it? I've lost a sweet amount of weight over it, so I really don't miss 'comfort food' any more.


5- And that leads to small meals. Over time as I've fine tuned my metabolic and chemical default states, I've noticed that even when I watch the carbs, I feel much better through the night when I don't fill up on snacks in general before I go to bed. I've spent years waking up to full blown anxiety out of a dead sleep, and that lately seems to have gotten better all by itself just by not eating after 6 p.m. They say don't eat for a few hours before bed to avoid heartburn and GERD, but it also works for other problems, too. I've been through severe GERD, which can be dulled by continually eating or even just drinking milk, but when you add diabetes to that mix, you can get full blown heart racing in the middle of the night, and then doctors increase your blood pressure meds and put you on more anxiety pills, and as time goes on and on, you become high risk for sleep apnea and dying in your sleep from medication overdosing.
Anti-anxiety drugs, sleeping pills linked to risk of death
Popular sleep medications associated with increased risk of death
Anxiety attacks in your sleep are your body kicking in keeping you alive. If you are having anxiety attacks in your sleep, the fastest and most drastic change you can make is to stop eating before bed.


There are a lot of people on the webs describing their lives with some pretty nasty sounding anxiety and scary depression. I've been there. Years and years of it. I've been a pharmaceutical guinea pig, I know the walk in clinics and ERs like I know my own house, and my family is so good at automatically watching out for my triggers that I feel like I've really dragged their lives down sometimes. My body has become so over sensitive and hyper aware of every little bitty change inside and out that I only feel safe in my own home, and living like this is ridiculous. This has nothing to do with will power and mental illness, but living in a body that can't calm down because I've trained it for so many years to stay in fight or flight response. Well, it's starting to calm down now, and I'm loving it.


I discovered all these things accidentally. I don't think doctors have a big picture yet, but they're working on it. I grew up on homeopathy, and guys, it doesn't work. It's just training your nervous self to compulsively pop more pills or whatever. Discovering I'm allergic to chamomile tea was an eye opener, most people don't even think of that. Anyway, if you want to feel better, get better, have more control over the pain and depression and anxiety blowing up and shutting down your lives, do these things-

-Get a glucose meter and use it religiously if you are diabetic.
-Find a good chiropractor, AND talk to your doctor about physical therapy for the pains that ail you.
-Take advantage of your medicare (it pays for PT) and insurance (they pay, too, somewhat grudgingly, but beats having surgery, which should always be a last resort unless it's a medical emergency).
-Stop lying to yourself about it's ok if you have this bag of chips or that pint of ice cream.
-Reconsider using meds to slap bandaids over what you can be fixing yourself. I don't know about other diabetics, but I get nasty headaches when my high blood sugar comes down too fast, and since I'm allergic to tylenol, I monitor my carbs instead of popping pills.

And the biggest part of making a new Plan is
-TELL SOMEONE. Get other people in on the changes you're trying to make. You don't have a safety net if you don't tell anyone what you're doing. Or keep a journal, write it down, blog it, vlog it, share your experiments, then look back a year later and see if anything has improved.


There is no such thing as instant success. My brain crash was in 2004, my body crashed in 2007 between a slipped disc and a nasty CMV infection on top of undiagnosed diabetes. I made a PLAN in 2008-2009 because I honestly felt like I was dying and nothing was helping, and my life really started turning around in 2011. I finally broke free last year, healthiest I've been in over a decade, able to take care of myself and do my own shopping, control my own problems, but it took a plan with a set of long range goals, a team that included doctors, chiropractor, and psychologist, and my determination that I didn't want to die yet. I was so miserable and my life sucked so bad, and now it's all a nightmare I woke up from.

I was there. Fat, crippled, ugly, and a really scattered mess. Don't blow off what I'm saying.


If you knew you could save your life and be boinging around feeling good ten years down the road, would you do it?

Stop eating that crap. Decide what you want. Make a Plan. Write it down. Set goals. Tell someone. Create a team. Start a new habit of living better one small step at a time. In ten years you will feel better and look better and be glad you're still alive. Even if you still live with depression and anxiety, you might find it easing up because your body is doing better.

Most of all, stop kicking yourself. Doesn't matter over what. Self defeat is the fastest way to sink.

If you are also struggling with alcoholism, I wrote this.


Thursday, October 16, 2014

I don't know if I'm being brave or stupid

Anxiety attacks are no joke. My blood pressure hit 171/92 at 7:20 this morning because of stuff I was writing elsewhere that kept hitting and pinging some of my worst triggers and took 20 minutes to come back down below the 140/90 line that my doctor freaks out about. I was kinda proud of that, usually takes an hour or two, in the past, even longer, and it's gone way higher than that, too. But my stomach and chest have still been tight all day and I'm doing maintenance workouts in small batches that won't trigger the fibro after all that hooplah.

Some people say "Get a grip." I have to very seriously UN-grip my whole body. It's been an all-day job staying on top of this while I keep working on that other writing, also in small batches. So why am I even doing it???

Because I can. Because I've come this far. Because I want to.

They say face your fears. They never say what to do after that. My biggest fear is my own body over reacting to everything. To me, anxiety attacks are like facing down a dog that is about to leap and bite or getting on a big horse that wants to bolt. (I've actually done both in my life several times, and honestly, I'll take the dog and horse any day over anxiety attacks.)

One of the jokes around my house is that if the world falls apart from some doomsday scenario, I'll be among the first wave to die, if for no other reason than because I won't be able to get my thyroid pills. Ever think about that? Five years ago I was on handfuls of medications, and I very clearly wouldn't have lasted through a major crisis like a nationwide economic crash.

I'm changing all that. I used to be real tough. An accident and a couple of illnesses changed all that for a long time, but I'm changing it back. Because I want to. Some day my anxiety attacks will last only a few minutes while I face even harder triggers, if they don't give me a heart attack first. I'm working on lowering that risk, not because I'm scared, but because I want to.

I used to be able to run. It's been a long time since my sister and brother and I pushed 200 head of nearly wild cattle between woods and hills through 2 miles of pasture to a chute, but we never stopped until it was done, and then the real work began.


I want to be able to run like that again.



Wednesday, October 8, 2014

for whoever can't sleep at 2 a.m. because their blood pressure is freaking them out

I really hadn't given a lot of thought until this last week to how experienced I am with monitoring blood pressure compared to a medical professional on the other end of a telephone call, like a nurse or a pharmacist. They are good people and undoubtedly well trained, and particularly wonderful to talk to when we are scared, but this week I was privy to a family member adapting to a new blood pressure med and grew very concerned about the 3 big M's going out of control- misinformation, misunderstanding, and medical mistakes.

Medical pix give me anxiety, so I'm going to put funny pix in this post. They all click to original source.


I'm sure this is a common scenario- a newbie takes a blood pressure reading, experiences a little panic about the numbers, calls a pharmacist or nurse and expresses their fear and concern, and that person almost automatically responds with a consequential action, in this case, changing the dose of the blood pressure med. Over the phone. Without a doctor being aware of what is happening.

Thanks to having so much experience with me in the house, Scott was able to help our loved one with repositioning the arm cuff which then led to much more pleasant numbers, and no need at all to change the dose and/or drive in to urgent care or call an ambulance.  Having been through two decades of my own arm and wrist cuffs and also being trained to take a blood pressure in nursing school, one of the first questions I asked when I got the call was- did you get the cuff positioned right, because those numbers don't sound right at all. I'd never heard of a systolic/diastolic combo as weird as that one, which usually means the cuff isn't reading the pressure properly. I couldn't believe that neither a pharmacist nor a nurse had even thought to question that before dispensing medical advice.


Even though taking a blood pressure reading is very easy, especially with today's techy gadgets, it's also very easy to mistakenly get a bad reading if you haven't been trained or don't take the time to read the instructions. It also helps to practice every once in awhile, and then write down what you get at what time throughout the day or night. Over the course of several days you'll find that 1- your blood pressure naturally goes up with movement and/or worry, 2- your blood pressure normally goes up and down all day and even all night, 3- you can make your blood pressure numbers better by pooping first or staying hydrated or simply just not caring what the numbers will be. It's very nerve wracking to shoot for a target number and then try to hit it on the nose, and even more nerve wracking when a new med makes you feel funny so your body responds against it and then you think the pill is killing you because your blood pressure went up instead of down.

My doctor is happy when he sees that my blood pressure isn't over 140/90. I have all kinds of tension driving into town and then sitting in his office, and my blood pressure pill can't force me to hold at 120/80 for beans. But after I get home and piddle around, I'm back down to 115/75 or something like that. It's hard not to believe your blood pressure pill will stop your heart from beating when dose time comes around and your pressure is already really good, and then you can go through another panic reaction if you go ahead and take it and suddenly your BP surges up to something like 180/110. Many people don't realize your body can override your BP med and that changing a dose based on panic causes even more problems down the road.


You don't know all this if you don't take your blood pressure. Ignorance is bliss. However, if you have diabetes or heart disease, you need to be checking it at least once a week to make sure you're on track with your meds in between doctor visits. The thing is, most people don't catch their blood pressure actually behaving well, even if it might be. That's why it's good to take a few readings at different times through the day for about a week when you first start taking your own readings. Find out what your normal really is. Your normal is an average of ups and downs, and your target for normal is around 120/80.

I have learned over the last 20 years that I can still function at 90/60 if a time release calcium channel blocker gets metabolized too quickly (even aced a college exam in that state), but you definitely don't get into a car and drive until you get over feeling like molasses dripping slowly down the furniture. My doctor pulled me off the time release after I got that reading and called him, and eventually switched me to a beta blocker. I've also learned that just switching to different kinds of blood pressure meds don't automatically solve problems IF your body doesn't or can't respond correctly or over responds while it's still fighting the sudden withdrawal of the one before, so jumping from a beta blocker or calcium channel blocker to an alpha blocker might bring one person relief and another person more problems. I went through a pretty rough month one year trying a different kind every week and finally on the fifth week came back to a beta blocker, which isn't ideal for me because I have multiple allergy issues and beta blockers exacerbate histamine levels and aren't necessarily top choice for diabetics, BUT I'm used to it, I tolerate it well, and with as much experience as I have with it, I am able to adjust my dose while I monitor over several days if there are any changes, like when I'm on prednisone (big blood pressure drop) or experiencing any kind of inflammation or autoimmune flare up (blood pressure goes up and stays up when I'm sick).

Types of Blood Pressure Medications - It really does help to know more about the med you're on.

Choosing Blood Pressure Medications - Having more knowledge also helps us relax, and relaxing gives us more accurate pressure readings.

High blood pressure is a scary thing over time, but it's not something that's going to outright kill you right now today just because you took a blood pressure reading and scared yourself silly and it keeps going up every time you take another reading. Walk away from the cuff. Don't start popping blood pressure pills trying to force it down, and I'll tell you why with this example about the antihistamines Benadryl and Zyrtec- They're basically the same thing, only Benadryl works immediately to bring histamine reactions back down in the body during a crisis, while Zyrtec works more over time to help keep them down in the first place. Taking Benadryl doesn't prevent new reactions from happening because it mostly works the first hour or two you take it, but Zyrtec does if you keep it in your system by taking one every day, and the antihistamine effects are continual. Blood pressure meds are kind of like this. Some are more immediate, but most work best over time. When you start a new BP med or change your dose, it can take a few days or maybe even a couple of weeks before you see a steady lower reading, with others you might have a more immediate response. The last thing you want to do without supervision is pile on more medication to do something immediate that might actually have adverse longer term affects.


Any kind of pill that causes change in the body can feel disturbing. Your body is used to a certain way of doing things, it's got its own default set, and a pill is forcing it to change how it does things and set a new default. The first few days you're on a new med or dose change you might feel light headed or sluggish, and it will get even more confusing real quick if you start taking readings and panicking, because then your body will think you believe the pill is poison and it will fight against it trying to 'save your life', even though that pill might be what is saving your life in the long run.

I know all this because I have lived through some monumental panic attacks that sent my BP soaring to 240/130. I'm high risk for blood clots and strokes (family history), so you can bet that scares the crap outa me, but I'm still here, not one sign of even a mini-clot yet (yes, I've had brain scans), and I'm getting tired of panicking over it. Just a note here- I've only twice ever been given something to bring my blood pressure down and I hated it. I've had nitroglycerin spray under my tongue in an ambulance when it wasn't even that high, and another time I had it intravenously, probably more to force me to calm my nerves than anything so they could send me home. I wound up with throbbing headaches both times.


If you think you might need emergency help because you see a high reading, do this checklist- Am I breathing ok? Is my chest hurting? Am I dizzy? Am I moving around and functioning and thinking normally? If high blood pressure is the only symptom you are having and it's happening while you are in an alarmed state, then it's most likely temporary. I'm not advising you to sit at home with a pile of nerves and screaming high blood pressure, but I am saying that it will most likely come down after the adrenaline (fight or flight hormone) is filtered back out of your bloodstream and tissues, and even in an ER it has taken up to 6 hours for mine to come down. They mostly just watch it. If there are no other emergency symptoms, they generally don't treat, because if they treat and you really didn't need it because you're already on a blood pressure pill, your blood pressure will really drop when it does come down, which will scare you all over again. It's a fun little roller coaster that winds up getting really expensive really fast. So if you aren't having any other symptoms, try distracting yourself with ice packs and TV or a book (never do heavy exercise with your blood pressure already up real high) or maybe talk to someone on the phone or something, and then later you might notice the readings coming down.

Having said that, if you've got a history of blood clots, heart attack, or strokes, don't wait 6 hours if your blood pressure is staying high because I said to, because I certainly don't. I expect mine to come back down in about an hour or two, and it's always been back down in six without much intervention.

Also, if you have a jumpy spouse or whoever in the house that doesn't know how to help you stay calm and relaxed and actually kind of makes it worse with their attitude or their own panic or crabby reaction, it's your call whether you're going to sit there and let that dictate whether you go into some kind of overload and have a heart attack or something, which is one reason I have so much experience going on to the ER. People who don't have their own experience with how scary it is feeling their heart pound or simply just fearing death in general can be counterintuitive to blood pressure coming back down if they can't help being snippy or snarky or just plain mean, even if they don't mean it. When their turn comes, they'll be a big baby, too, but in the meantime, anger and hurt feelings only make high blood pressure worse, and feeling sorry for yourself in that kind of situation and not going in just to make someone pay if something really does turn out to be wrong is a stupid game to play. I've watched people play that game. No one wins.


Ok, back to basics. If you take readings at home, it's important to practice on other people besides yourself, it's important that other people learn how to take your blood pressure for you if you need them to (kids love this), and it's important that you NOT take every single reading so seriously that you wind up sending yourself to the hospital. It's ok to see weird numbers. The first thing you do is check whether the cuff is placed correctly, whether it needs a battery change, whether you might need a new one if that one has been dropped too hard or is getting old, and whether you get crazy numbers on anyone else in the house. Never assume your first reading is written in stone or that it means death, ok?

In all my years, I've also discovered that there is such a thing as too much blood pressure medication. Logic would seem like the more you take, the more your blood pressure goes down, and then at a certain point you just don't take any more because you've reached your goal. Wrong. Blood pressure meds don't work like that. Your body will always try to keep your heart beating until it simply can't any more, and your fight or flight hormones will always try to boost your heart rate up if your body feels like it's getting too low until it simply can't. I didn't know for years that one of the reasons I was waking up with a racing heart out of a dead sleep was because my heart rate would drop low enough that my brain would kick it back up, and this didn't stop until I lowered by blood pressure med dose, even though my daytime blood pressure was staying above 120/80. It's actually pretty normal for blood pressure to drop and spike while you sleep, but mine was getting a little ridiculous about it. I seemed fine while I was up and moving around, but the second I went to sleep, boom, racing heart. I went to sleep clinic, no signs of apnea, wore monitors, no signs of any problems once my SVT was corrected, but I ran across an article at Blood Sugar 101 called Why is Blood Sugar Highest in the Morning? 

Taking a bit too much blood pressure medication can also cause your blood sugar to go up first thing in the morning. That is because if your blood pressure drops too low at night, the body will also secrete stress hormones to raise the blood pressure back into the safe zone, and they have the side effect, as we've seen, of raising blood sugar.

Again, the tip-off that this is happening is that you are likely to wake up at 3 or 4 a.m. with your pulse pounding, sometimes you will think this is because of a vivid nightmare, but it is more likely that the nightmare was a response to the surge of stress hormones that raised your blood pressure.

If you measure your blood pressure after waking, the main thing you'll see is a faster pulse. The blood pressure will be back in the normal, or even slightly high zone. If you raise your medication because the blood pressure is too high first thing in the morning, you may make the situation worse!

If you are waking up with a pounding pulse in the early morning hours and see your morning blood sugar rising, too, talk to your doctor about whether your blood pressure medication needs adjustment. 

That one article has saved me so much grief. I'm on less than half the BP med dose than I was on when I first read that article, and I feel so much better! Part of that is I've discovered other things that artificially raise blood pressure. The biggie for me was my birth control pill. My blood pressure had been high for years and I never thought to connect it with my birth control until I went through menopause and my blood pressure just went insane and nothing we did could control it. A doctor finally pulled me off my birth control and voila, blood pressure suddenly dropped and I had to cut my blood pressure medication dose in half. Then suddenly it went up again because (try to follow this, it's just ridiculous) stopping the estrogen suddenly sent me super hyper thyroid because evidently estrogen blocks thyroid hormone uptake and I therefore had to take a higher dose of synthroid for years, and suddenly the whole dose was being used without the birth control pill in the way, so my blood pressure surged again. (That's a whole lot of suddenly.) My doctor stopped the thyroid pill until that leveled out, then started a lower dose, and suddenly my blood pressure dropped again. That was two really interesting months, and I was a mess. But I've never since gone back up to as high a dose of blood pressure med as I was on previously.


I've had another pleasant surprise lately. I have discovered, as I am cutting all wheat from my diet, thanks to another dumb food reaction that took 2 1/2 weeks of prednisone to control, that cutting my carbs way down again is also having a very positive impact on my blood pressure, and I'm once again having to cut my medication dose and monitor every day. If my body winds up defaulting down to this new blood pressure default level, I might even be able to wean off my blood pressure pill (never cold turkey off a beta blocker). I'm very excited about that. In case you are on the fence about wheat and/or carbs and fighting your own high blood pressure battle, check this out. It's a bit of reading, but if you are desperate for relief and nothing is working, you can always try it. Sure worked for me.

Sorry so long, but I got to thinking about how I wish I could find more people just talking about their experiences with this stuff when I was younger and searching the webs for stuff in the night. I mean, not freaking out in forums or whining on blogs, but just talking about stuff, you know? Well, this is me talking. You are going to be ok, but you've got to want to get better bad enough to make changes and stick to them. In the meantime, learn about your blood pressure meds, practice taking your blood pressure, and don't feel guilty when it gets scary. You're not alone. I've been dealing with blood pressure pills for 20 years and it's still scary sometimes, but mostly because I hate the way my body feels and reacts when things change.

Pills are like bandaids, they are temporary patches to help us manage what should be temporary problems. Sadly, they've become lifestyles, and now it's all about managing our medications. Popping pills to fix things isn't the answer, but while we're having big problems, they are a relief, and they give us time to figure out what is going wrong and find ways to get our health back on track.