This is going to be one of those posts where I ramble and just let my thoughts and feelings spill out on to the page like a diary entry, because I think it's the only way I can explain properly, make sense of it all, and hopefully clear my mind of the stress in the process. It's probably going to be a bit of a long one, and I'm sorry if a lot of it doesn't make much sense.
About three weeks ago, I began getting some really weird symptoms. I had intense abdominal pain for a few days that was so painful I genuinely thought something had or was about to rupture, which then faded and gave way to excruciating, electric, nerve pain (like horrendously painful pins and needles) in my torso, arms, back, and spine. I was also getting numbness in places, and tender pain in parts of my spine that don't usually cause me too much grief, and all the while I was shaking constantly from head to toe, like my whole body had gone in to shock or I'd spent too long listening to Trump being a racist, sexist, self-obsessed dick.
The problem was, I wasn't sure whether something new had happened, like a trapped nerve or another slipped disc, I'd caught a bug, or I was just having a particularly nasty flare up from one of my conditions, so I decided to hold off on going to the doctors, hoping it would magically improve on it's own in a couple of days. In my gut, I knew something wasn't quite right, but I didn't want to waste their time and I was even less eager to go in case it resulted in another scan (major claustrophobe right here) or getting hospitalised, if it did turn out to be serious, so I took my chances.
By the Saturday before last (18th Feb), the nerve pain had died down, but the shaking was only getting faster, and it was driving me crazy. Trembling constantly gets pretty irritating after a while. At 11pm or 12am that night, the shaking grew even faster and my heart began racing like crazy along with it. It was thumping so fast I thought my heart was going to explode. I tried everything I could think of to keep myself calm,and relaxed- deep breaths, concentrating on the TV, listening to some comforting music, reading... but nothing made a difference and it just wouldn't slow down. I couldn't relax, so I ended up being awake all night, too scared to sleep, thinking my heart was going to quit on me. I eventually drifted off around 6 or 7AM for two hours, but by 9AM I was awake again for the day, well and truly exhausted.
On the Sunday morning (19th Feb), the shakiness had climbed to a whole new level, and my heart was still beating furiously, so I was beginning to worry that something serious was going on with me. I decided to tell my Mum what was going on around midday, but I didn't know what to do- whether to go to A&E, wait to call the doctor the next morning, or do nothing and try to ride it out. I mulled it over and did my best to make myself as comfortable as I could curled up in bed, trying to distract myself with the TV and my cross stitch, but that didn't work at all. My heart rate was freaking me out so much it was impossible to concentrate on anything else.
After taking my second dose of medication for the day, around 3pm, my heart suddenly began beating uncontrollably, to the point I was struggling to catch my breath, and it just kept getting worse and worse. I was really starting to get scared by this point, so I knew it was time to see a doctor. I was adamant I didn't want anyone to call for an ambulance because I didn't want to take one away from someone who needed it more, when I was probably just making a mountain out of a mole hill. My Mum was panicking, so my sister, Marie, who used to be a nurse, came round, took charge and after feeling my pulse and being able to see my heart beating through my skin, phoned 111. After answering a million questions, about my symptoms and my health, he encouraged me to go straight to A&E, so I quickly chucked on some clothes, and found myself stressing about going out in public with no bra and dirty, tangled hair I'd not been well enough to wash in over a week more than my heart rate. I have my priorities down!
Marie drove me to A&E, and during the journey, it quickly got a lot worse. My heart was racing uncontrollably, and I began to get pain and tightness in my chest, made worse by every little bump in the road. By the time we got to the hospital in Oxford about 25 minutes later (I live out in the sticks), it was so tight and painful I felt horrendous, and was struggling to put one foot in front of the other to walk from the car in to the hospital. Marie wanted to go get me a wheelchair but I asked her not to because I was a little scared (by my heart, not of the hospital) and didn't want to be on my own feeling like that in a dark, quiet car park. Thankfully, a kind paramedic in the ambulance bay let us walk in through the ambulance entrance to A&E because I don't think I would have made it all the way through to the public entrance- it was quite a trek.
I somehow made it to the waiting room, and in to a chair, and Marie had to leave me on my own for a bit to check me in at reception. I honestly think that was the worst part of the whole ordeal for me that day because, although there were only about half a dozen people in the queue, there was only one person working on reception and the queue just wasn't moving. According to Marie, the woman was working at a snail's pace. She must have been waiting a good ten or fifteen minutes to be seen, but to me it felt like an eternity. I was feeling absolutely atrocious by this point, like I had the flu on top of the agonising chest pain that felt like my heart was being constricted within an inch of its life, I didn't think I was having a heart attack before I reached that waiting room, but I sure thought I was about to have one while I was sitting there alone.
Thankfully, once Marie had checked in, I only had to wait a few minutes before I was seen by a really friendly (possibly South American or Spanish) male nurse. I guess it was lucky that it was a Sunday night, and one of the quieter times of the week. It wasn't deserted, and there were dozens of patients, but it was far quieter than I'd expected the John Radcliffe A&E to be, even on a Sunday night. He really helped to put me at ease so from that point I was completely calm and stopped worrying because I felt like I was in good hands. He took all my medical info, along with my blood pressure (which I think got up to 150/110), temperature, and blood oxygen levels (both perfectly healthy), plus a bunch of other stats, and then directed me to a small waiting room within A&E where Marie and I waited until I was collected by a doctor a short while later.
I had two young doctors working on me at the same time, a man and a woman, neither were particularly chatty, but they did a good job of looking after me, and trying to work out what was going on through tests and asking loads of questions. I had some blood tests done, which ended up taking a while because they had difficulty finding a vein and drawing blood, and then was fitted with a cannula. Then after taking some stats, I was moved in to a cubicle, got hooked up to some monitors for a couple of hours, had various tests done, and had my very first ECG.
I was completely relaxed and unfazed, lying on the hospital bed having all these tests, but my heart rate was, unbelievably, racing away at up to 160BPM!! I don't know what it is usually, but I think it's in the region of around 70-75. I may be fat and chronically ill, but I've always had a really healthy heart rate for my size, even when exercising. It's
never climbed even close to as high before, and I've never had any heart problems before, either. After a while it was still fluctuating between 127-140BPM, but it was beating steadily and consistently, apart from the occasional nerve twitch, and the doctors were scratching their heads because apart from my heart rate and blood pressure being a little high, all of the tests came back perfectly healthy. It was a relief to know I wasn't having a heart attack, but it still didn't explain why my heart was racing like crazy. I did tell the doctor that I had recently had my sulfasalazine dosage increased, but he didn't think anything of that, and after waiting around for the results of my blood tests for an hour or so, his best guess was I was probably just suffering from dehydration- although, I wasn't convinced that was all it was. He felt confident enough to discharge me by about half ten, so we made our way home again back to the sticks.
During the journey my heart rate got a little faster again, but I was hopeful I'd feel better in a day or two and just had to ride it out. Once I got home, I got some fluids in to me, managed to eat half a sandwich, as I'd eaten nothing all day, and took my painkillers, leaving out the sulfasalazine as I felt like I would vomit if I took another mouthful of water in order to swallow it. I crawled in to bed absolutely exhausted, and in agony, and thankfully, managed to fall asleep around 2AM.
The next morning (Feb 20th), I was feeling a little better, and my heart rate had slowed down a bit overnight, which was an encouraging step in the right direction. At 3PM, it began getting faster again, and after taking my last dose of medication for the day, at 12:20AM that night / Tuesday morning, it suddenly pounded to life once more, hammering away uncontrollably beneath my skin like a drummer on seventy-six cans of Red Bull beating the shit out of a drum kit. I automatically realised that my heart rate had noticeably increased after taking my medication that day, the afternoon before, and on Saturday night, and only during the doses that included my anti inflammatory drug, sulfasalazine. When I thought back, I was able to work out the shakiness and unusual symptoms had started around the time I'd had the dosage increased from three to four tablets a day. I Googled the known side effects of the drug to see if any of them matched up and whether I could be right... fast heart beat, chest pain, difficulty breathing, dizziness, abdominal pain possibly radiating to the back, gastric upset, bluish skin... so many of them fit. I was pretty certain I'd found the culprit, but that didn't stop me from spending another night being extremely panicky and struggling to remain calm. I couldn't catch my breath again, and I was so freaked out by the speed my heart was thundering I didn't fall asleep until dawn.
From early Tuesday morning (Feb 21st) and throughout Tuesday, my heart rate felt like it was speeding even faster than it was on the night I ended up in A&E, and I completely admit I was terrified. I hadn't taken any more of the tablets, but it wasn't slowing down, and it just felt like it was out of control. I couldn't calm myself down, I couldn't catch my breath, and my chest felt so tight, I was having difficulty breathing and speaking. I was so freaked out and unwell, I was in tears. I didn't see the point in going back to A&E after all of those tests had shown I was otherwise healthy, but we phoned my GP for advice mid-afternoon. She wasn't able to phone me back until 6:30PM, by which time the surgery was closed for the night, but she was pretty shocked to hear of what was and had been happening. She put me on hold while she looked up the reports from the hospital, and in to the side effects of sulfasalazine, and although she couldn't find increased heart rate listed in whatever literature she referred to, she agreed it probably was the cause, and not to take any again. She was quite concerned, so she booked me in to have another ECG at the doctors surgery the next morning, and to see her afterwards, but told me I was to go back to the hospital for help if I got worse at any stage beforehand.
So, I went in for my second ever ECG at midday the next day with a nurse at the practise, and was surprised that this time it only took five minutes. I'd fully expected to be there for at least an hour. My heart rate had slowed down considerably since the day before, but it was still very high, going at 117BPM- four and a half days after it first started racing. I think it climbed to around 180 BPM the night before, as I was averaging three beats a second, but I can't be certain because my medical knowledge is limited to two years of animal care, common sense, and episodes of Grey's Anatomy.
My GP saw me a little later and I have to say, she was very thorough, running all sorts of tests on me, to the point she even measured and compared the circumference of my calves. I'm still not sure why that was or what it had to do with my heart rate, but they didn't appear to be a problem. She was very concerned about my heart rate, but utterly bewildered because, by all accounts, everything was healthy and normal apart from my heart rate. She still wasn't entirely certain it was all caused by the sulfasalazine, but after hearing my evidence, it was the only conclusion she was able to make there and then. I was advised not to take them again, and asked to cut my amitriptyline dosage in half as apparently that can also increase the heart rate. I've been on that drug for over five years and nobody has ever told me that. She took more bloods before I left, and arranged for me to see her again the following Monday, but told me to contact her or go back to A&E if certain symptoms got worse at any point in the following days.
Over the following days, my heart continued to race with eagerness at various speeds, and I was basically on edge the entire time, freaking out whenever it sped up, slowed down, continued racing, or morphed in to palpitations. Basically every waking second. It probably sounds like I was being ridiculous and over-dramatic, but I kept worrying it was either going to turn in to a heart attack, or suddenly stop beating, exhausted and damaged from racing continuously for so long, because surely hearts can only withstand so much. It was really frightening. I found myself crawling down the stairs on a number of occasions when I could barely even stand because of my chronic pain, out of fear of being alone in my room feeling so on edge, in need of people to distract me from focusing on it.
On one particularly bad evening, Rosie, my dog, laid herself over my legs on the sofa, and wouldn't leave me, and kept watching me with this really concerned, fearful look in her eyes that I've never seen her make before. She even got up and put her foot on my heart a couple of times. Call me crazy, but I honestly think she knew I was ill and was trying to look after me.
By last weekend (25th-26th Feb), it finally felt like my heart was slowing down, and perhaps I was beginning to recover, except for the fact I now had palpitations, and my heart beat was fluttering every five or six seconds. It got a little faster again on the Sunday night, and kept me awake, so I was only able to catch two hours sleep before I was up for my doctor's appointment first thing last Monday morning (27th Feb).
At the doctor's surgery once more, my heart rate was fast again, and my GP was concerned that it still wasn't back to normal over a week since it had first began to race and I'd stopped taking the drug. (Although, it could have been racing because I had a pounding headache and every little sound in the noisy waiting room had been torture. My head hasn't stopped pounding in a fortnight). My blood tests had come back clear- my kidneys were healthy, my white blood count was normal... everything except my inflammation levels were perfectly fine, but we already know they're warped. She suggested that I should meet with a cardiologist for a 24 hour map of my heart (I think it was called a holtor test- like an ECG, but for an entire 24 hours) to get a more in depth look at how my heart is functioning, and hopefully get to the bottom of all of this, if the medication isn't the cause. I think it's a sensible idea at this stage, so I'm now waiting to hear back with an appointment.
She also pitched the idea about weaning me of my Amitriptyline and Tramadol painkillers, because apparently they can also speed up the heart. I had to be honest with her, and told her I'm barely coping with my chronic pain as it and I'm in so much pain 24/7 that I'm bed ridden most of the time and can't even look after myself properly, needing help from my family for a lot of things. I know I would not be able to function at all if she took me off both of them and left me with just paracetamol and vitamin D! I've experienced it before- an absolute twat of a doctor took me off all my meds cold turkey about four years ago, and I went through horrific withdrawal symptoms for three days because of his actions. I was in so much pain I was writhing in agony and couldn't even lie in one spot for more than ten seconds; it was agony and I've never been so sick or in so much pain in my life. I still get a little distressed when I think back to it, and I just can't go through that again. I agreed to cut my Amitriptyline down even further from 100mg to 25mg, but for now we're leaving the Tramadol as it is. Of course, if it does turn out something serious is going on with my heart, it's something I will have to consider, but I personally don't think it's currently causing me any of the problems.
When I got home, I got to thinking that perhaps it wasn't just the sulfasalazine causing the problem, but that it was still continuing because I had cut caffeine out of my diet since the night in A&E, to avoid aggravating my heart rate further, and that I could in fact be experiencing withdrawal symptoms from caffeine, alongside a reaction to the drug.
Here's where I admit I've had a pretty bad addiction to cola since I was about fifteen or sixteen, and have barely gone a day without at least one can of coke since the turn of the millennium. I'm now thirty-one. I'm not proud of it. I've completely wrecked my teeth, and I know it's extremely unhealthy to consume regularly, but I've never managed to kick the habit. I've tried, but never succeeded for more than a few days. I've been drinking maybe two or three cans a day in recent years, but since that night in the hospital, I've only drank one can altogether. It may or may not have been what started up my heart in the first place, but I'm becoming more and more certain that it's the reason why it's continued for so long: I've probably been experiencing withdrawal from caffeine these past two weeks! After doing a lot of Googling on caffeine withdrawal, the symptoms seem to fit, and I think I've found my answer. I queried this last night with my GP when she phoned to check how I was getting on, and she agreed it was highly likely to be what was going on. I'd had a bad reaction to sulfasalazine and aggravated it with caffeine withdrawal.
Let's just say, I'm not in a hurry to drink caffeine again any time soon.
My heart continued to race and flutter throughout last week, and at times I felt extremely unwell, but by Thursday, it finally began to slow down, and I started to feel more like myself again, with my chronic pain taking the lead once more. I still have palpitations and irregularities and it hasn't quite returned to a normal speed or rhythm just yet- and it picked up speed again over night and it's racing again now- but I'm hopeful I'm on the road to recovery now. I feel so much better this week, and can't wait for life to get back to normal. I guess time will tell if my medication and the caffeine were to blame, or if something more serious is underlying with my heart, but fingers crossed it's the former and I never have to go through something like this again. I can honestly say I've never been more scared in my life than I have been these past three weeks. I've been frightened and on edge the entire time and aware of every single beat thumping and fluttering under my skin. As much as I've tried, it's been near impossible to switch off and relax, and far too easy to focus on my own mortality. Give me chronic pain any day; it's much easier to live with.
I did attempt to blog a few times during all the craziness, but I found that trying to curate a blog post was too stressful and was increasing my heart rate, so I decided it was best to take a break from blogging until I was through the worst of it. I couldn't even turn on my laptop much because I felt nauseated just looking at the screen. I'm sorry I went AWOL for a while, but now I'm finally feeling more like myself again, I'm hoping I'll be able to get back in to the swing of things, and start bringing you lots of exciting new content again. I have so much I want to blog about, but I think I'll just have to take it one day at a time and ease myself back in gently while I recover. One day at a time...
If you made it through to the end, thanks for reading, and listening to my boring rambles. I hope I've not sent you to sleep! I promise there'll be some more exciting posts on the blog soon!
Have you ever had a bad reaction to your medication, caffeine withdrawal, or problems with your heart?
