Thursday, 27 July 2017

Another Boring Health Update

It's been a few months since I last sat down and wrote an update on everything that's been going on with my health, so I thought it was about time I wrote a fresh post to fill you in.


If you read my last health update in March, you might remember that in February I suddenly began experiencing some pretty intense tachycardia and palpitations that resulted in an emergency visit to A&E for an ECG. I had numerous tests at the hospital and with my GP, but the doctors couldn't find the cause of the problem because all of the other tests came back perfectly healthy, and the only conclusion was that my medication could be to blame. However, weeks after I was taken off the drug, my heart rate wasn't showing any signs of slowing down, so my GP eventually decided to refer me to a cardiologist for further tests, and an expert opinion.

And so I waited.

I eventually got an appointment through for the end of May, three and a half months after the symptoms began, which was a long, worrying wait when your heart is racing continuously, and you have no idea why. I have to admit that the length of time I had to wait scared me to begin with, because not knowing what was going on with my heart, I didn't know if my heart was going to hang in there long enough to get me there. I know that makes me sound over-dramatic, but three and a half months feels like an eternity when an organ you rely on to live is suddenly malfunctioning, and you have no idea why. All I could do was pray my heart kept beating long enough to get me to the appointment.

In the meantime, I had a number of appointments and blood tests with my GP to keep an eye on things. Thankfully, all the tests came back perfectly healthy, apart from my heart rate, and the usual high inflammatory and parathyroid levels which have been abnormal for years.

My GP was eager for me to go back and see my rheumatologist as a few months had passed since I'd last met with him, although I was waiting for the issues with my heart to stop before I continued with his care because it was more than I had strength for, and at the time, travelling was only increasing my heart rate. Of course, not long afterwards I received an appointment slip through the post... three days after the stated appointment date. I still have no idea who made the appointment. My GP didn't know anything about it, but she had contacted the rheumatologist to fill him in on the latest developments with my permission, so perhaps he made it. In the end, I had to rebook an appointment to see him, even though I knew it would be a complete waste of time and money because I couldn't take any new medicines, try any new treatments, or exert myself with exercise until I knew what was going on with my heart. It turns out, I was right; my rheumatologist wasn't willing to proceed with treatment until I'd seen the cardiologist, and we knew what was going on. He wasn't convinced the sulfasalazine tablets were to blame for my increased heart rate and palpitations, but he ran a few tests on me, and took my pulse, which was still beating away at around 120BPM! He was baffled, and curious to know what was going on.

While I was there, he suggested a couple of new anti-inflammatory drugs we could try once the heart issues were resolved as a replacement for the sulfasalazine, and talked about the results of my blood tests. My parathyroid, which is the thyroid which regulates how the body uses and stores calcium in the blood and bones, is still very high, and apparently if the hormone remains high for a long time, it can do so permanently which can lead to all sorts of problems like softening bones and kidney failure. If it remains high much longer, I may have to have surgery to remove the parathyroid glands from my neck, but if it happens, it happens. I'm told it's just a simple procedure so I'm not worried. Whatever I need to do to keep myself in working order. I'd rather go through the surgery than further health issues as a result of doing nothing.

There wasn't a lot else he could do until we knew what was going on with my heart, so we agreed to put care for my chronic illnesses on hold until I'd met with the cardiologist, and left it at that. That was £95 down the drain.

With everything going on with my heart,  my chronic pain and chronic illnesses have had to take a back seat, so I've had very little care, and no scans or treatments so far this year. I've not been making any progress, but as no painkiller or treatment has ever reduced my pain, or improved my mobility, it hasn't had a negative impact or made any difference to my life. I would just like to resume my care with the rheumatologist and spinal surgeon soon to try to find something that might help me improve enough to get some resemblance of a life back.

Between that appointment in April and the appointment with the cardiologist at the end of May, very little happened with my health care, apart from more blood tests to keep an eye on things. My heart continued to race uncontrollably at various speeds, and while now and then it slowed down a little, it's not gone back to normal since it all kicked off in February. There were a number of days when it raced so fast I was on the verge of going back to A&E because it was scaring me so much, but I didn't bother because I knew they wouldn't be able to do anything, and I'd have just been wasting their limited time, and resources. I had and continue to have a lot of sleepless nights because when your heart is beating uncontrollably fast it's not only uncomfortable, but surprisingly difficult to relax, and switch off enough to drift off to dreamland. On the particularly bad nights, the speed of my heart puts me on edge, and every time my eyes grow heavy or I feel my heart slow a little, I jolt awake with a fright, scared I'm about to die instead of go to sleep. It's exhausting.

At the end of May, I finally had my appointment with a cardiologist at the John Radcliffe. First I had to have an ultrasound on my heart, which included scanning my chest and left breast up to and including my neck. It was no big deal at all, except that it was actually quite uncomfortable in places, particularly when she scanned my throat, because they have to press down so hard with the Doppler to get a clear image. I also had another ECG- my heart rate was still around 120BPM- and my blood pressure was taken, which was completely healthy.

After the tests, I had to wait around for a while to see the cardiologist for the results. It turns out my heart is perfectly healthy and functioning at it should- apart from beating much too fast, of course. They don't believe my heart complaints are the result of a heart condition, which was a massive relief to hear, but in another way, it's frustrating because I still don't know what is causing the problem. When I asked the cardiologist if X, Y, and Z could cause tachycardia, he told me it could be caused by pain, stress, medication, anxiety, caffeine, other health conditions, nothing at all, and all sorts of other things, and then kinda rudely implied that he thought I looked like the type of person who would be overly anxious. I have to say, I was really offended because I'd only been in the room about thirty seconds, and had barely had a chance to open my mouth. Yes, I do suffer from anxiety but I wouldn't call myself overly anxious these days, as it's currently well-managed, and affects me more in social situations. I know it's not the reason because I've not been feeling anxious at all lately. I've noticed stress aggravates my symptoms, but I don't believe that's the cause, either. I still think the medication, or the strain of almost six years of constant pain is to blame, but lately I've been wondering if my laptop could be contributing to it because I use it so much when I'm propped up in bed with it sitting against my legs and stomach. Although, it was still racing like crazy when I was in Cornwall and away from technology for a week, so who knows. Perhaps I'll never get to the bottom of it.

The cardiologist suggested prescribing me some beta blockers to help slow down my heart a little, but advised that they have a tendency to cause extreme fatigue, which isn't what you need more of when you're living with fibromyalgia!

I finally began taking the beta blockers a couple of weeks ago. Unfortunately, all they did was increase my heart rate further, give me palpitations, and make me ill, so I had to stop taking them. I still need to speak to my GP about it, and find out if there's an alternative I can try, but I don't want to continue taking them.

I also recently went for an ultrasound on my ovaries to investigate the pain I was getting in my ovaries, groin, and abdomen at the same time my heart first began to race. I don't know if it was connected, but it seemed important to find out in case something in that region could be the cause. I noticed the pain was returning in monthly intervals and seemed to be be coming from the area around my reproductive organs, so I brought it up with the doctor, who wanted me to get an ultrasound to see what was going on. The scan was more to find out if I have PCOS, which I've always been pretty certain I have because I've never functioned normally, and it runs in my family, but I had never talked to a doctor about it. To be honest, it's never bothered me and I don't particularly want kids, so I never felt the need to. I'm still waiting for the results, but it'll be interesting to find out if anything is going on there, and if the results could give a reason for my heart issues. 

Everything seems to be a bit faulty with my body these days. I think I need to go in for repairs or a full body transplant! Haha!


So, it's been an eventful few months, and a lot has been happening, but it could've been a lot worse. My heart is still racing away five months down the line, and I still have no idea why, but the main thing is I'm still alive and fighting, and getting by just fine. I'm not giving up just yet! The grim reaper will have to try harder than that if he wants to catch me!

Well, that's me... how have you been?

5 comments:

  1. *Hugs* I'm sorry they haven't found anything definitive and I hope they work something out soon. Also I find your health updates anything but boring *hugs*

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  2. I'm so sorry that you are still in the dark about the heart matters, it sounds extremely draining and scary.x

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  3. I'm sorry they are still struggling to give you the answers you need x

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  4. Dear Louise, I read all your health updates and when you started writing about your heart condition scare I remembered that Ella Woodward (Deliciously Ella) wrote about her health journey and that she was diagnosed with POTS (and a racing heart was one of several symptoms she had).
    https://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome#Signs_and_symptoms

    Sometimes other health issues come out of the blue on top of all other issues - As if all other issues are not enough. Maybe you have a look into her book via amazon?

    I'm struggeling with health issues after an accident, so a strict vegan diet is no real option, but sometimes I like to try something new from her book.

    I wish you all the best!

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  5. Oh hey, we seem to be twins! I was in hospital the start of last year because of my tachy heart, and with starting to see a new doctor, he refered me to see a cardiologist. Went through with a 24hour ECG, the ultrasound (which yes, the throat hurt!) and a stress test. All came back normal, apart from being fast! Which didn't surprise me, after being in hospital the year before and the only thing they could find was that my magnesium was low. I was put on beta blockers too but wasn't told they could make me more lethargic. Explains a few things. I also have PCOS, which I want to go back and get tests to see how it's going, it's been over 10 years since my last. Hope you're doing okay though. oxox

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