The problem with hope…part 2
A day or two after starting the antibiotics I start feeling massively dizzy if my head juggled even slightly and I started to feel like the back of my throat was encased mucus or snot or something. I'd had antibiotics make me terribly phlegmy before so I assumed it was my antibiotics and I stopped taking them. I know you aren't supposed to but screw that.
The biggest problem was that all that phlegm/gunk made me feel like I was going to choke any minute, and like I just couldn't breathe as well as I wanted to, it was horrible. Because at this point I knew I didn't know as much about bup/na as I should. Everything that I felt seemed potentially bad and the listed side effects were no help as it seemed bup/nal had every known side effect and most of them were listed as both “should go away and not problematic” and “RUN TO THE HOSPITAL NOW”. How can you know what you should worry about when the same effect could either be really bad or not an issue?! While my doctor's office was open the week after Christmas, none of the providers were in, I honestly don't know why they made anyone come in.
Saturday after Christmas and that phlegm is just really bothering me, it felt harder to swallow and like it was so bad my airway was constricted. I go and grab the mucus cold medicine. I check and there doesn't seem to be any heart or breathing side effects so I go ahead and take some and thankfully it starts to help, at least for a little bit anyway.
After a while, I start feeling…off. Something is wrong again, and this time it felt REALLY wrong. I just was not getting enough air and I was shaky, my head felt wrong so did my chest. I had taken my anxiety medication so I just knew that this time what I was feeling was a problem. Buy the time K came in from plowing, I was sort of moving frantically from the bathroom and the bedroom, picking stuff up, putting them down, then trying to gather up my clothing and medication with shaky hands. I tell K that I had to go to the hospital, something is wrong. He asks me about how I feel, I go over it all and as I talk things are getting worse. We climb in the car and on the way decide I need to go to the hospital, not urgent care because things keep getting worse. Unfortunately, the Hospital is 35 minutes or so from the hospital, so I had plenty of time to freak out as my hands and feet start to go numb.
I won’t go through every single step along the way, but ultimately they find nothing wrong with me and my oxygen was just fine. How in fuck can I be just fine? We do a breathing treatment, they give me some steroids, and I get sent home again, thankfully by that time while I didn’t feel normal, I felt a lot better. How can nothing keep being wrong with me when I feel so horrible?!
On the way home K and I buy one of the oxygen/heartbeat deals they use everywhere, so I would know how my oxygen was doing and maybe not keep ending up in some medical facility.
That night was the last real meal I was able to eat for something like 2 weeks.
For a very short time, things are relatively okay and we go to bed. When K ends up being rather snore-y I move into the sewing room to hopefully get a little sleep. About an hour after falling asleep I wake up almost in a panic, I’m not breathing well and my neck and chest HURT, when it creeps into my arm I freak a little bit. Knowing that the signs of a heart attack are different for men and woman, and thinking about how much a false alarm everything had been up to that point, I grab the oxygen sensor and my phone and hide in the bathroom to quickly do some research. I don’t want to bother K unless I felt we really had to.
My oxygen was fine, and while my heartbeat wasn’t exactly normal, it also wasn’t as crazy bad as in theory it should have been. When things eventually get a little better and my research shows I’m most likely not having a heart attack at that moment, I start looking up the side effects of the medication I had just been given. I had brought in my bup/nal in to the hospital with me and explained everything. Guess what? The steroid has a side effect of sometimes making people go into withdrawals.
Sigh. Really? Thank goodness I bought the damned sensor or I’d have ended up in the hospital again.
Starting the next morning not only am I just not hungry at all, but I am too miserable and that gunk in my throat gets worse with most things I eat. More gunk means I feel I can’t breath and freak out. So I don’t eat. Mostly sticking with pickles, sometimes soup and maybe apples. Seriously. At one point I try hopping in the shower and steam thinning some of the gunk, which overheats me ultimately and makes everything worse.
I can’t eat, I can barely move my head, I start to REALLY hurt and I can do nothing but sit in my chair. I mean nothing. For those of you who don’t know, I don’t do nothing. I mean I always have at least one thing, sometimes more, to do with me at all times, but I can’t sit and just do nothing. Any time I tilt my head downward the gunk creeps up and starts to choke me again.
I do call my doctor’s office after the new year… which was no help. No one was there. They did call the assistant to my doc, who called the doc, and we do some weird phone tag, but basically they said that if I didn’t feel any worse to just keep on like I’d been. No real advice, no nothing. Gee. Thanks.
At one point K suggests I use a cool rag because I am just HOT along with everything else. That ended up being the best piece of advice I could have been given. For well over a week I put cold rags on my face, neck, forehead almost constantly, it’s the one thing that feels good and helps sooth the gunk and swollen feeling. Thankfully I’m somewhat warm or hot most of the time, so even though it’s winter I handle it pretty okay. I started to look old for me because my skin starts to dry out majorly.
Throughout this time I am doing constant research on the new meds, I know very little about it ultimately, and I’m constantly unsure and freaked out about how I feel from moment to moment. That’s how I figure out that a lot of information I should have been given wasn’t. This medication was NOT a one for one swap, not really. True, I was stopping my opioid and starting to take something else, but that’s about where the one for one swap idea dies. I knew that Bup/nal had originally been used to help people get off of opioids and heroin, but I honestly didn’t give that much thought. After all, as I might have mentioned in my earlier post, I’ve been on Methadone before without any issues but crazy side effects. I had no reason to really think about whether or not I had been taking anything else before that. I hadn’t, it was the first thing I was really on. In the case of Bup/nal being used as it was intended, it helps dull some of the withdrawal symptoms of dropping whatever you were addicted to. Notice I said dulls, you still feel some of the withdrawal symptoms, just not as bad. They give it to people like me because they figured out that it sometimes helps people with chronic pain. You are still going through withdrawals. Let me repeat that, you are STILL GOING THROUGH WITHDRAWALS. Because technically you are dropping the medication you were physically addicted to. I was NOT told this. I had no idea AT ALL that ultimately what was happening was that I was ditching my opioid and the new medication was simply helping to mask some of the withdrawals, with a side effect of helping dull some of my pain.
HOW DO YOU NOT TELL A PATIENT THAT?!?!?!
The second huge thing I learned all on my own was that a side effect of Bup/nal is anxiety. I was put on a medication that often gives you anxiety…when I already have anxiety. Yes. This was something my doctor’s office knew. Granted, it is unreasonable to expect them to check every single potential side effect against the patient’s record, but it would have been nice to have known that was a possibility as it really has kicked my anxiety into crazy overdrive. That is probably a lot of how I ended up in the hospital and urgent care. Not knowing my anxiety was driving me, and because of my early issues the first night, everything I felt seemed a million times worse probably and caused me to have a panic attack, unlike anything I’d experienced before. That extra anxiety is still driving me, I’ve had to write this post a small bit at a time because just reading and writing it can start to freak me out a little. I don’t like this at all.
Slowly, painfully slowly I start feeling a little bit better and can add food on but those two weeks made a mark, I had lost 15 lbs. Granted not at all the way you want to lose weight, but I took a photo of the scale anyway! All of my pants and my jackets were bigger than I expected. Eventually, I no longer have to use the cold cloths and I stop feeling so overheated all the time. Things aren’t perfect, but I’m glad for feeling better, to start eating something that starts to look like meals instead of a random collection of snacks.
Finally, my pain management appointment comes up and I look forward to maybe some solution, or if nothing else being able to express how little I knew about what I was asking to take. I did get to tell the doctor that I knew absolutely nothing really about what Bup/nal was about…too bad, it wasn’t to the doctor that actually put me on the medication, it was to her partner. Don’t worry, when I talk to her I’ll let her know I just had no idea what I was getting into. Sadly I wasn’t given any sort of solution, other than to be told that I didn’t have to take all of a strip if I didn’t want to, so I have weaned off about half a strip total. Effectively I was told that as long as there was a benefit and things didn’t get worse, I should try to power through. The doc said he thought it was likely that I had some kind of upper respiratory infection and it was just crazy timing.
Where am I today? Why has it taken me SO LONG to finish this post? Well it’s been about 3 weeks from that doctor’s appointment and for two of those K and I were out of state in Arizona and Nevada, visiting Dad and K’s mom, which means that I flew not at 100%. The trip wasn’t as horrible as I was afraid it would be, although there were 2 days where I ultimately had to call off doing anything with anyone. Added to everything else I figured out that certain seats will make me feel congested and gunky, and cars have far more of that problem than anything else. While down there I got a lot more congested, and I discovered that neti pots probably aren’t as crazy as I thought they were. I haven’t used an actual neti pot, but I came across a similar if an updated idea, which is basically a squeeze bottle you use to shoot saline through your sinus’. That thing worked better than anything else to help make my life easier.
Sadly I’m STILL not back to normal, I’m much better than I was, but I still have to be careful about what I’m eating/drinking, and I feel like I run out of breath more than I like. But is that real, or is it anxiety?! Fun huh? Yes, I’ve gone to my GP, and really what all can she tell me. I am trying cutting something out of my pill regimen to try and eliminate a possible cause, and I see my pain management again tomorrow so I guess we’ll see. I do feel like I’m at a bit of a standstill as I don’t seem to be getting any better than I currently am. I still personally feel like it’s a medication side effect, otherwise, you’d think I’d have gotten worse or better by now.
Sigh. So where does that leave me? With better pain management than anything else I’ve tried, but miserable in other ways. Without knowing if this is 100% a side effect issue, how can any doctor know how to help me, or even what might be wrong?