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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 overmedicating. Show all posts
Showing posts with label overmedicating. Show all posts

Sunday, June 4, 2017

living with a med addiction

This could have been miles longer, but I'm learning to cut it way down.

One month on baclofen, and having obvious issues with it. Latest issue is altered mood states, mostly super cranky, underlying issue I found out a few days ago is it raises blood glucose, which might explain the 15 point rise in my fasting glucose and the subsequent pain loop induced as neuropathies worsen with diabetes flares.

First dose was heavenly, but I could sure feel it wearing off, which I didn't realize was a red flag. Second dose (next day) less heavenly, sucked wearing off. Continued one dose per day for a week, which helped with the immediate problem in cervicocranial stiffness and pressure, and decided to half the dose. Wow, only one week on 10 mg a day and cutting to 5 mg was nuts. The next day I took 3/4 of the pill and did that for a couple weeks. Could tell this would be a problem and looked up the med specs.

So I'm a protracted withdrawal benzo patient who cleaned off 2 decades of regular low dose benzodiazaine (and all other meds) for 2 whole years, back on super low dose xanax in lieu of head meds backfiring, also now on low dose gabapentin for a year (higher doses were a nightmare), and now on low dose baclofen "as needed" (right, a script for 3x per day doesn't actually spell 'as needed'. So glad I never did more than once a day in retrospect). Basically, I'm on a cocktail of receptor meds that seem to be locking me back into addiction nightmare, and they're not playing around.

Add to this a swedish massage for neck, back, and shoulders, actually barely touching neck this time, and I'm waking up in panic attacks out of a sound sleep 2 days later, fibro reaction to hands on (even gently) plus med edginess from dosing down, can't even begin to describe what abruptly waking up like that is like. Adding a background of years ago car ejection survivor with unknown possible brain injury (around brain stem at that) and I can't tell if this is just med taper or an actual problem. I'm obviously typing just fine at 2 a.m., so I'm leaning toward protracted withdrawal rearing its ugly head. The crazy heart racing and panic (complete with weird numb and temperature change surges) absolutely would not calm until I got out of bed, got dressed, booted up my laptop, and started typing. Welcome to med addiction 101, where the internet in the wee hours is your best friend.

It's hard to prioritize like this, but seems to me the most recent med is the easiest to get back off, right? Looked up several sites with taper advice, and baclofen is looking worse than xanax, and xanax was hell enough the first go round. Check out this forum asking the question Can Baclofen reset benzodiazepine withdrawal symptoms? That's about the most eye opening thing you'll ever read about patients knowing their stuff. Using these kinds of forums was how I was able to clean off 2 decades of opiates and benzos. And if you don't understand all that big junk, lemme sift it down to *easy* for you- Always go real slow getting off your meds. And if at all possible, best to let your doctor know you're doing it.

I know there will come a point where I will need to stick with the big guns the rest of my life, but I prefer to hold out on that option until I'm actually crippling up and super miserable again. I can't believe I keep getting these big prescriptions for stuff that barely even shows up yet on scans, and actually more dangerous than simply just monitoring me on one receptor med like xanax. Being on 3 different ones while dealing with side effects on top of real life problems seems a bit exaggerating.

Anyway, boiled down, I clearly can't stay on a daily med pulling the ol' alt mood thing on me while it pumps my blood sugar out of my control, so here we go, time to deal with real. I will go back to bed now, fully clothed, knowing that this all calmed down and, aside from tight neck muscles, I'm fine. It's just my nervous system going crazy while my brain receptors readjust.

June promises to be a long month, which seems fitting since 2017 has been a great big grinder all along anyway. And when do I not glory in suffering? I really am at my best when life sucks harder than usual.

I started writing about medication addictions in 2008 on my Bluejacky blog, much of which is now private, so I've got 9 years of medication addiction personal blogging under my belt. So much is out there that I don't feel I need to add more, so I rarely bring it up nowadays. Tonight was courtesy of Pinky, who says it's important to keep integrating #allthethings. Tonight's post was brought to you by super spoonie aspienado.

Wednesday, September 23, 2015

middle of the night chronic spoonie lurker jackpot


Pix click out to other sites and sources. Some amusingly have nothing to do with what we're talking about.

I was very ill for about a year before I finally felt desperate enough to seek out medical help. I'd lost 75 pounds and hurt profusely all over, and felt like my spine was being microwaved, as if the spinal cord must have a fever. My first doctor was an ancient country doctor on the brink of retirement. My bloodwork inspired him to let me know I would be in a nursing home by 40, and that there was nothing that could be done. Then he prescribed the biggest jar of aspirin I ever saw in my life and told me to take it every day. About a couple of weeks into the aspirin I went through a full week of hallucinating and 'visions' and should probably have been in a hospital. I never went back to that doctor, and stopped the aspirin. I was in my mid 20s.

A few months after that I dragged myself into a city clinic and saw a real rheumatologist. He asked why I was there. I told him I thought I might have lupus. He asked me ten questions, and I said yes to all ten, including losing my hair, which was noticeable to my family. Without ordering a single blood test, he laughed and told me I don't look sick, and said I was skipping down a rosy little path to a psychiatric illness. I dragged back out to my car and sat there crying for almost an hour. Note- several years later, a doctor sent me back to that same rheumatologist who was now in an even bigger clinic, and after touching my rock hard shoulders exclaimed that I had the worst fibromayalgia he'd ever seen and demanded to know why I wasn't being treated for it.



I was too devastated to try again for another year, until I finally couldn't take it any more. It was a horrible time for single parents on medicaid, no clinic I called would take me. I finally drove back to the city to a clinic I hadn't called yet and dragged from office to office asking if someone could please see me. Finally, on the third floor, one doctor said yes and saw me that day.

From Fibromyalgia- University of Maryland Medical Center
"Fibromyalgia can be difficult to diagnose. It can take 5 years for the average person with the condition to finally get a diagnosis. As many as three out of every four people with fibromyalgia remain undiagnosed."
I was fast tracked to rheum and diagnosed within a week.

From Do I have lupus or fibromyalgia?- Fibromyalgia Information Foundation
"As many of the symptoms of fibromyalgia are similar to those experienced by lupus patients, there is a natural concern that the symptoms of a fibromyalgia flare could be the underlying lupus picking up steam. Ultimately, the treating physician has to make a call on these increased symptoms. In general, lupus patients who are undergoing a flare have other findings; such as evidence of true arthritis (usually with joint swelling), skin rashes, sores in their mouth, fever, hair fall or evidence of specific organ disease such as pleurisy or microscopic amounts of blood and protein in the urine. Furthermore, in active lupus, blood tests such as the sedimentation rate often become elevated, the white count (particularly the lymphocyte subset) becomes depressed and there is often an increase in the level of anti-DNA antibodies. None of these findings are a feature of fibromyalgia -- thus the distinction between a flare of fibromyalgia and a flare of lupus should not be too difficult if the problem is approached systematically."
I was also dx'd simultaneously and treated immediately for lupus based on positive ANA and high SEDs which refused to come down for several years even on meds. Medicaid wasn't paying for a new drug called Ansaid, so my doctor kept me on samples for five months. I credit him with saving my life. He also dx'd me with Hashimoto's (autoimmune thyroid) about a year later, based on radioactive iodine uptake.



My SEDs hovered between 75 and 100 for several years. I felt like my bones had been crushed and nothing touched the pain, but the Ansaid kept me functioning enough to work on my college degree.

In the years since, photosensitivity called polymorphic light eruption (PLE) was confirmed by a dermatologist, a liver condition called NASH was confirmed by an endocrinologist, and I underwent heart surgery at 38 to correct a rhythm problem that started in high school after I had measles, which I just lived with until it became unbearable. During my worst year I went through nerve fail which caused such severe dry eye (I still make only 3% moisture in one eye, confirmed by an opthamolagist) and dry mouth that I developed cavities all over my mouth. My dentist was thrilled when the moisture finally came back on, and I have had only one cavity in the years since.

I'm also positive for lyme, esptein-barr, bartonella, and CMV, plus I had the measles in high school. What doesn't kill you doesn't always make you stronger. Sometimes it makes you a puny sickie.



Why am I saying all this? Because I still have doctors asking Are you sure it's lupus? (Yeah, they're asking me.) I've never been hospitalized and managed to fake my way through 15 months on a desk job (my last job after years of more laborious jobs) without missing a day before I finally fell apart because when I was growing up, we never went to doctors. I grew up on a farm working like a dog since I was very young, pushing animals 4-8 times my size around regularly, and using my hands so hard that I'd developed carpal tunnel by the time I was in high school (recently confirmed as 'severe' by a neurologist). Then I went on to survive being thrown out of a car crash without any pain meds at all. After living with nasty trigeminal pain from damage for years, a neurologist finally dx'd me with trigeminal neuralgia.

I've come through a whole lot of thick and thin, have been through several epic health crashes, but what started turning it all around was 1- finally being dx'd with diabetes and changing my diet, and 2- slowly weaning off the handfuls of meds that kept me 'drunk' for years. AFTER THESE TWO THINGS, my liver tests finally went back into a normal range. I had elevated liver enzymes for two decades until I changed those two things. One year my liver was so sick that my doctor wanted to test me for autoimmune liver disease, but I felt too rotten to go through a long needle penetration. I still get symptoms once in awhile, so maybe I do, but it sucks so I avoid flaring it as much as possible.



Ever since I made these changes, which have taken several years (four years since the diet changes, seven years since I first started weaning off meds one by one under doctor supervision), my health has slowly but steadily improved. I have come back from being convinced death was close (using a cane and sometimes a transport chair and daily advair just to be able to breathe, and needing help dressing and bathing), to living a pretty normal life in my own home now. I still have mini flares, I still get SED spikes once in awhile, but for the most part nearly everything in my body is improving as I age after years of immobility and misery.

I still look around for tips and advice from other spoonies on rough weeks, and what I call my rough weeks are still spectacularly rough compared to non-spoonies, but to me now, they're a vast improvement over rough years.

I wrote this down in one place to give other people hope. There really is hope.

If you are a very sick and puny person and are still drinking soda pop and smoking cigarettes, you cannot get better until you stop that.

If you are a fatigued scatterbrain who enjoys a little too much pasta and dessert, you cannot get more energy until you stop that.

If you are overworked and eating salads and and torturing yourself to 'be healthy', you cannot feel healthy until you stop that. Get some real rest and more protein in your diet.



If you are buying extra makeup and putting more chemicals in your hair trying not to look bad, stop that and take a step back- do a real self assessment, prioritize some goals, make a PLAN, and spend the next 2-5 years implementing. It took you years to go to pot, it'll take a few years to come back from that.

I am a workaholic. I'm also an alcoholic (20 years dry now), a very heavy smoker (3 packs a day, 25 years off now), a codeine-benzo-caffeine addict (never cold turkey off benzos, guys, it sucks and it's dangerous, and guess how I know that), a chocoholic (a severe nut allergy popping up cures that real quick, read a few labels and laugh with me about how most of the chocolate in the world is processed in facilities also processing nuts), a sweets junkie (I'm an artist with decadent baking), ok you get the point. All that stuff piles up. And once you've overloaded, it takes years to undo damage to your immune system, your liver and kidneys, your eyes, even your brain. You can't take ginseng and improve your brain power and still do all this stuff.

There are people out there who do everything right and don't get better. Hugs to you guys, I've watched a few friends go down and I know it's really hard. There are other people out there who do everything wrong and live long lives without ever getting sick or cancer. High five on you guys, good on your magic DNA. Trade me bodies sometime. And don't gloat or feel better than other people because we all know it was the luck of the draw, and it's not like you got to pick your body before you were born.



It's not your fault. Yes, we have science and medicine now, yes, you know better than to be ingesting things and not exercising and whatnot, but just because we know this stuff doesn't mean it's your fault. 300 years ago, people died all the time and no one knew why (unless it was murder or some crazy accident). Now we know why, and basically it really is the luck of the draw- you are stuck with the DNA you were born with. Some people are prone to cancers, some prone to diabetes, some prone to autoimmune problems, whatever. You were born that way.

True story. My husband's granny lived to 102 with full blown diabetes. She avoided stuff that spiked her blood sugar. Her daughter (my husband's mother) eats bags of candy and to this day in her 80s remains completely free of diabetes. Eating sugar doesn't cause diabetes, but it will make you very sick if you have diabetes. My husband has been hovering on the brink of 'pre-diabetes' (that's such a joke, just call it what it is) for years because he's a hard worker and manages to keep his fasting glucose low enough to keep the doctor hesitating, even though he carb loads like crazy sometimes. When he does that, his heart races, and we know there is some damage going on at the cellular level, but he thinks he can get away with cheating. He's never yet been treated and he doesn't count carbs, he just works really hard.

On the other hand, I come from everyone going diabetic on my mom's side, lots of strokes and vascular disease kind of stuff, and she didn't make it to 70. I watched diabetes destroy her. She suddenly started wasting away and I thought she had cancer. She said she never felt better in her life. I don't know if that was true, because I also know her feet started going numb, and it took her months to recover properly after a simple gall bladder surgery.

I was going down way faster than my mom. Way faster. Now I'm doing much better at this age than she did. Way better.

I just want to let you guys know there really is hope, but you are the one who has to decide whether to make it possible. Whatever your diagnosis, whether they're missing something or not, even if it feels dire, you can make decisions that change how you feel down the road. Where do you want to be in five years? Make a list. Fewer headaches, maybe. Heartburn gone for good. Bladder control. Less brain fog. A little more energy. You might surprise yourself if you make a decision and stick to it. Just 5 years ago I was using a motor cart to buy groceries. Now I trot all over Walmart.

Little steps over several years add up to really big changes.



Wednesday, August 26, 2015

mean is how I show my love

There's a new policy agreement I had to sign before my physical therapy assessment this time. They have so many no-shows and cancellations that they're losing a substantial amount of money flow, and THAT, my friends, is why insurance is so stupidly high. Don't blame it all on poor people and ERs. Blame the people who have insurance and medicare who are purposely noncompliant with care plans.

Physical therapy is hard work. It's not for the faint of heart. I've been there- in and out of wheelchairs, using a cane, needing a driver and assistance in and out of the shower, and help getting dressed. I know exactly what it feels like to be a burden and spiral down a black hole of hopelessness. I'm such a good friend with pain that I actually miss it when it's gone, because I almost get high off of it, even without meds.

It's so easy to take the whiny way out. I hurt. Yeah, join the club. I have a headache. My worst headache lasted 6 weeks and I got at most ten minutes of sleep at a time that entire time, because it was so bad I couldn't even lay down, so I hear ya. It's hard. So is having babies, and that's not stopping anybody. I can't do it. Then curl up and die, you big baby.

That's me talking to my head. I have said all the things everyone else has said. And then I kicked my butt and slammed my head into a wall and GOT TO WORK. I got pissed off enough to get up and do something about my whining.

It was hard believing I could do this. Every morning I had to actually literally SAY "I can do this." Sometimes it was just a whisper in my mind while I cried. Sometimes it was a hopeless defiant shout in the dark. But many times I really did say it out loud on my way in to physical therapy.

Yesterday was hard. I'm in a better place than I've been in years, but it was still hard getting through another assessment and core review. I'm not out of the woods. I can't just flop my body into a chair and pop pain pills when I sit too long. I can't be lazy without backsliding into more pain and disability and eventually major surgery. Yes, I can ask them to turn the pain off and risk paralysis and sepsis and a whole list of other possibilities in a 50/50 gamble, because that's what surgical pain management is. It doesn't fix anything. It actually harms the body even more so you just can't feel it. There's no guarantee how long it'll last, and once it's done you can't go back and undo it. I know too many people this has backfired on. It's way too easy to skip ahead to the last resort and then hear the horror stories- multiple procedures melting down into meth addiction trying to handle pain that simply can't be killed off. Procedures that went well but then catastrophic fail happened after a blood clot in the spine, making the disability so much worse than it was before. Pain being replaced with maddening numbness. Asking someone to cauterize a nerve is such a leap of faith, I can't imagine doing that unless I was ready to commit suicide anyway. My psychologist told me a few times I'm a cynic. That's putting it mildly. I look at it like this- if a surgeon tells me he won't do pain control on me even in radiology with a needle because my history contraindicates success (nice of him to be honest), then I'm going to find another way to live like this.

There is this wonderful program in place to help people who are sinking into quagmires of pain and disability. It's called physical therapy. It's there for just about everyone- medicare is very supportive, and most insurance plans will take the brunt of the cost. All it takes is a person telling their doctor they'd like some help with a specific pain- how to move correctly, how to strengthen that area, how to become more functional around the house. I can say from experience that it's like working miracles, but it takes participation. You can get a whole team of people in on it, and they'll all tell you the same thing- pain shots, PT, and even surgery all work better with regular stretching and exercise, and good nutrition and hydration. You wanna heal? Cut the crap. You don't make a car run better pouring sugar in the gas tank. You don't stick a cigarette in your dog's mouth. You don't give babies beer bottles. You don't pick a fantasy football player who doesn't make the workouts. The logic is sound. All we have to do is apply it.

Several years ago I made a decision. Do I want to LIVE? If I don't save myself, no one else has to. Get out there and GET TO WORK. It made differences nothing else ever did.

I went through a little backsliding the last 8 months, so I'm back in GET TO WORK mode. I'm slapping myself to get up and MOVE, I'm plugging my ears and singing lalalalala when my head whines that this is too hard, I'm gritting my teeth and psyching up and telling myself that actors and professional athletes are where they are because they were willing to work for it. There is nothing in this world saying a writer doesn't need that kind of one on one physical training, as well. Sitting in a chair writing words isn't easy. Anyone who thinks it's easy is an idiot.

I know I sound mean. Sometimes you gotta get mean if you wanna stick around longer for your family. Whining my way to an early grave is unacceptable to me. I've got things to do, people to meet, a world to change...

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.