Update from 2013: This is a story from a time in my life when I was going from doctor to doctor, looking for answers, and being fed one drug to another. I finally decided that drugs were not the answer, and sought for answers on my own. I kept track of my research on my other blog: Kate's G-Free Journey.
From September 21,
2010
11 months ago I landed in the ER....
and three more times that week alone. I didn't want to go to the ER, but
every time I mentioned that my heart felt funny, nobody would see me and
sent me to the ER instead. Nobody could figure out what was wrong and
each time I was sent home with various concoctions to make me feel better and
wait-and-see.
I don't know what we were waiting for, but I kept getting sicker and sicker. I was seeing a Nurse Practitioner at the local clinic who was also mystified as to what was causing me to become so ill. After a lot of frustration I began researching on my own and tried following various diets and other methods to make me feel better. That is when I stumbled across Celiac Disease, or a possible gluten intolerance. I did my own experiment (stopped eating gluten) and almost immediately felt better. Five days later the clinic decided I must have Celiac Disease (an autoimmune disease that makes your body incapable of absorbing nutrients when gluten is ingested).
But it didn't change the fact that my heart was still feeling funny -- like something wasn't right. I was growing so weak I couldn't stand for more than a few minutes without feeling like I'd just run a marathon. Everything I did required major physical effort. I eventually found my way to an internal specialist in January of this year, when my husband complained that "she needs to see someone smarter than she is" since I had pretty much called my own diagnosis.
We ran every kind of test available, including an echocardiogram to look inside my heart and see what was going on. It was determined that I had a borderline low ejection fraction (how forcefully the heart pumps out blood) and that I must have been in some kind of myocarditis or congestive heart failure. Heart failure?? You mean the kind where your heart just gives out?? That's the one. I was given an over-the-counter antiflammatory drug and never given a reason why it happened in the first place. But from that point on, I determined to strengthen my heart, little by little as I could tolerate it.
Eventually, while staying gluten-free just in case, I grew stronger and stronger with fewer setbacks in between. Out of this entire year, I'd say June and July were probably my healthiest months because I was no longer feeling sick every day and no longer feeling so weak. I actually felt energetic and strong, and for the first time in a very long time I felt well. I decided it was time to address the sleep issue.
I don't know what we were waiting for, but I kept getting sicker and sicker. I was seeing a Nurse Practitioner at the local clinic who was also mystified as to what was causing me to become so ill. After a lot of frustration I began researching on my own and tried following various diets and other methods to make me feel better. That is when I stumbled across Celiac Disease, or a possible gluten intolerance. I did my own experiment (stopped eating gluten) and almost immediately felt better. Five days later the clinic decided I must have Celiac Disease (an autoimmune disease that makes your body incapable of absorbing nutrients when gluten is ingested).
But it didn't change the fact that my heart was still feeling funny -- like something wasn't right. I was growing so weak I couldn't stand for more than a few minutes without feeling like I'd just run a marathon. Everything I did required major physical effort. I eventually found my way to an internal specialist in January of this year, when my husband complained that "she needs to see someone smarter than she is" since I had pretty much called my own diagnosis.
We ran every kind of test available, including an echocardiogram to look inside my heart and see what was going on. It was determined that I had a borderline low ejection fraction (how forcefully the heart pumps out blood) and that I must have been in some kind of myocarditis or congestive heart failure. Heart failure?? You mean the kind where your heart just gives out?? That's the one. I was given an over-the-counter antiflammatory drug and never given a reason why it happened in the first place. But from that point on, I determined to strengthen my heart, little by little as I could tolerate it.
Eventually, while staying gluten-free just in case, I grew stronger and stronger with fewer setbacks in between. Out of this entire year, I'd say June and July were probably my healthiest months because I was no longer feeling sick every day and no longer feeling so weak. I actually felt energetic and strong, and for the first time in a very long time I felt well. I decided it was time to address the sleep issue.
I wish I'd never addressed the sleep issue. I was put on trazadone, which is normally
used as an anti-depressant but has such a good sedative effect that it is
commonly prescribed 'off-label' as a sleep aid. Small doses didn't work
for me so the dosage was continually increased until one night my entire
cardiovascular system felt so suppressed I had difficulty getting my lungs to
inflate. I almost ended up in the ER again but managed to pull through
the night without having to go anywhere. It was just a couple days
before Bozeman's annual Sweet Pea Parade and since I had started taking
the trazadone, I had somehow dropped ten pounds in a very short time.
I called the doctor the next day and made sure it was okay to stop taking the medicine cold-turkey and that there would be no side effects or rebounds. He said I would be fine, so the night before the parade I didn't take it. The day of the parade, I was fine (some trazadone still likely in my system), was full of energy, and was happy. The very next day, however, the rebound hit. My anxiety was so bad that I couldn't stop shaking. I knew it was pharmacological because it didn't feel natural, and decided to just get through it, drink lots of water and flush it out of my system.
I called the doctor the next day and made sure it was okay to stop taking the medicine cold-turkey and that there would be no side effects or rebounds. He said I would be fine, so the night before the parade I didn't take it. The day of the parade, I was fine (some trazadone still likely in my system), was full of energy, and was happy. The very next day, however, the rebound hit. My anxiety was so bad that I couldn't stop shaking. I knew it was pharmacological because it didn't feel natural, and decided to just get through it, drink lots of water and flush it out of my system.
A couple days later I was back in the doctor's office and this time he
prescribed Restoril, which turned out to be about $10 per pill. He wanted
me to take it only every other day to avoid any harsh effects, so I bought only
3, to last the week. It didn't work anyway. I was still feeling
like I was getting weaker every day but kept up my exercise routines, slowing
them down considerably. After the Restoril, I started feeling sick again
and weaker and weaker.
My heart would feel funny again-- fluttering sometimes and small palpitations at other times. Back to the doctor. It was eventually decided that I was suffering from both anxiety and depression, and considering my homelife, I began to believe the same, even though it was something I had never experienced before. In the past, when there was a problem, I simply dealt with it and didn't become sick. Now it seemed my body was rebelling and shouting out for some attention.
My heart would feel funny again-- fluttering sometimes and small palpitations at other times. Back to the doctor. It was eventually decided that I was suffering from both anxiety and depression, and considering my homelife, I began to believe the same, even though it was something I had never experienced before. In the past, when there was a problem, I simply dealt with it and didn't become sick. Now it seemed my body was rebelling and shouting out for some attention.
The doctor put me back on clonazepam (which I had weaned myself off of early in
the year when I found out how easily it is to become dependent upon it), and he
added buspirone to the mix -- an
anti-depressant/anti-anxiety med that is fairly mild, due to my
history of over reacting to any kinds of medictions these days. The
clonazepam is an anti-anxiety medication that just happens to put me to sleep
for several hours, so it was used as my sleep aid, in addition to the buspirone
for depression/anxiety. The clonazepam was definitely helping me get a
few hours of sleep, and the buspirone would be most noticeably working (or not)
within 7 to 10 days.
It just so happened that during that 10 days I spent a wonderful, mostly stress-free week on Whidbey Island, seeking solutions to my current dilemma: finding a house and a job in Oak Harbor. Even though nothing was really accomplished during that week, I was away from the stressful home situation and was feeling fine again. I thought maybe I was going to be alright again.... until the last night on the road when the heart palpitations came back while just standing there, suddenly and without warning. Marie and I were having fun, laughing and joking... no stress or anxiety involved.
It just so happened that during that 10 days I spent a wonderful, mostly stress-free week on Whidbey Island, seeking solutions to my current dilemma: finding a house and a job in Oak Harbor. Even though nothing was really accomplished during that week, I was away from the stressful home situation and was feeling fine again. I thought maybe I was going to be alright again.... until the last night on the road when the heart palpitations came back while just standing there, suddenly and without warning. Marie and I were having fun, laughing and joking... no stress or anxiety involved.
When my heart feels 'funny' it always
scares me. I can handle anything but that. I did some research into
drug side effects and found heart palpitations listed under clonazepam.
Luckily I had a doctor's appointment the day after I got home. He said he
had no answers for it. I asked about the medication, and he said he
didn't feel it was likely but you never know. He reduced the dosage as a
precaution and I have been sick every single day since then. It is
my intention to wean myself off of the clonazepam.... again. And also the
buspirone.
I wish I'd never started the clonazepam! Because I am so sensitive to medications, I
have been slowly reducing the clonazepam from 1 mg to 1/2 mg, but every day, 12
hours later, I pay the price for it. My heart feels funny and there's a
lump in my chest that doesn't want to go away and I feel like I can't breathe--
I was told this is what anxiety feels like. And then I am even more
anxious because now I don't trust my health. My health has caused its own
anxiety as the same weakness I experienced during the time of my heart
failure.
Because I've been on the clonazepam for a longer period of time, it is going to take longer to get it out of my system. Most people are unsuccessful because the anxiety comes back so much that they have to take even a small dose to keep it at bay. The first time I was on it for a very short period of time and it took over three weeks before I felt it was out of my system-- longer than I even took the drug in the first place. Recently, I have sat many times staring at that bottle of clonazepam and debated whether I should take it or not during the day. I have come very close, but somehow have had the strength to resist. But I am still paying the price.
Every day I am sick to my stomach, and every day, particularly in the first half of the day, my brain tells me to take just a fraction of the pill to see if it will make things better so that I can do what I need to do. Once I can get past those few bad hours, I will have a few good hours, though still feeling weak, and by dinner time it all comes back again until I take the 1/2 mg at night.
I keep wondering if the pills started this downward slide -- because it couldn't have come at a worse time. If all goes as planned, I've got 8 days to get much of this house packed up. On the 9th day it needs to be loaded into a U-Haul, and on the 10th day I need to start the move to WA. On the 11th day I need to complete the drive and unload a moving van. On the 12th day I will likely be sleeping on a mattress on the floor too tired to move.
I want to say this isn't a good time to reduce the clonazepam. I need to be healthy in order to make this major move. But at the same time, I don't want the heart palpitations. It will be a miracle to get done what needs to be done in the time frame I have.
This current setback (sick and weak most of the day) has lasted a week. Even though it technically started with the trazadone almost two months ago, this last week has been particularly bad.
Because I've been on the clonazepam for a longer period of time, it is going to take longer to get it out of my system. Most people are unsuccessful because the anxiety comes back so much that they have to take even a small dose to keep it at bay. The first time I was on it for a very short period of time and it took over three weeks before I felt it was out of my system-- longer than I even took the drug in the first place. Recently, I have sat many times staring at that bottle of clonazepam and debated whether I should take it or not during the day. I have come very close, but somehow have had the strength to resist. But I am still paying the price.
Every day I am sick to my stomach, and every day, particularly in the first half of the day, my brain tells me to take just a fraction of the pill to see if it will make things better so that I can do what I need to do. Once I can get past those few bad hours, I will have a few good hours, though still feeling weak, and by dinner time it all comes back again until I take the 1/2 mg at night.
I keep wondering if the pills started this downward slide -- because it couldn't have come at a worse time. If all goes as planned, I've got 8 days to get much of this house packed up. On the 9th day it needs to be loaded into a U-Haul, and on the 10th day I need to start the move to WA. On the 11th day I need to complete the drive and unload a moving van. On the 12th day I will likely be sleeping on a mattress on the floor too tired to move.
I want to say this isn't a good time to reduce the clonazepam. I need to be healthy in order to make this major move. But at the same time, I don't want the heart palpitations. It will be a miracle to get done what needs to be done in the time frame I have.
This current setback (sick and weak most of the day) has lasted a week. Even though it technically started with the trazadone almost two months ago, this last week has been particularly bad.
I just wish I'd never started... under more
pressure than ever, and with no local help or support system in place. At
times I honestly don't know if I can do it. I have the desire to, but
when I get up to do it I feel so weak I only last a few minutes. And
my stomach hurts almost all... the... time.
Tonight I should reduce the clonazepam by a small amount again but am constantly questioning whether this is a good idea or not --due to the timing. Tomorrow morning (during a withdrawal period) I will be at an attorney's office going over marriage dissolution papers. Is it so smart to be reducing the anti-anxiety medication during this time? So far I have been taking the pill only at night, even though I was instructed to do it during the day in small amounts as needed. I figured if the point in reducing the dosage is to avoid heart palpitations which in turn causes my anxiety, then why should I take small amounts during the day to add to that dosage?
Tonight I should reduce the clonazepam by a small amount again but am constantly questioning whether this is a good idea or not --due to the timing. Tomorrow morning (during a withdrawal period) I will be at an attorney's office going over marriage dissolution papers. Is it so smart to be reducing the anti-anxiety medication during this time? So far I have been taking the pill only at night, even though I was instructed to do it during the day in small amounts as needed. I figured if the point in reducing the dosage is to avoid heart palpitations which in turn causes my anxiety, then why should I take small amounts during the day to add to that dosage?
I just wish I'd never started. Can you
hear the frustration in my voice? Somebody, please tell me what to do
because I don't know if I can do this on my own.
LATER: OK I just found out that buspirone causes
stomach upset. Might explain the stomach aches all week. The rants
about my health are getting really embarrassing. Just disregard all the
jabber in the previous post. As long as I'm on any medication it seems I'm just
going to be sick. I hate taking pills and I hate being sick. End of
story.
Looking for Balance.................
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