Posted on June 5, 2021
So often in my life it seems, medical stuff is like waiting for a bus: weeks or months go by and then suddenly a whole slew of them show up. And that’s certainly been true of the last few months. Just as the final module of my Masters was starting, I was hit by a series of awful migraines, suffered with terrible tooth pain, and spent twenty four hours hooked up to a blood pressure monitor, a test ordered by a neurology unit in London. So it’s been a pretty hectic time…
At the time of writing this, I’ve lost approximately half of the last forty days to migraines.
I’ve had migraines before – maybe a handful a year, depending on my stress levels and the medication I’m taking – but they usually only last for a day or so before fading away. They’re not pleasant but they weren’t seriously impacting my life. But then I had one that lasted roughly four days and I ended up in A&E because, having fairly recently had the Astra Zeneca vaccine, my doctor was worried about the extremely rare side effect of a blood clot. I was sure it was a migraine but agreed to go and after most of the day there, I was released; the doctor agreed that it was most likely a bad migraine but told me to come back if it didn’t go away. And after another day or so, it did. While I was somewhat irritated about losing a day that should’ve been spent working on my end of semester assessment (despite the pain, I was pushing myself to work on it as I could, in the moments where the painkillers actually worked – I think that’s mainly why it went on so long personally), I am really grateful to all of the hospital staff. They were all great – warm, considerate, and personable – despite the somewhat alarming COVID precautions everywhere that weren’t exactly great for my anxiety. But they were really kind and gentle with me throughout my visit, making the whole experience a lot easier than it could’ve been.
I’d thought that that was it. But then, again and again, I was hit by migraine after migraine, all lasting unusually long periods of time (for me, at least). They were averaging out at about six days each time, sometimes more. That was extremely stressful, bearing in mind that I’m at the beginning of the homestretch of my Masters with this final module accounting for 60% of my final grade, and I was utterly miserable from the pain. I was also so light sensitive; at one point, even the darkest room in the house felt too bright and I dissolved onto the floor in tears, which only hurt my head more. It was awful. That was the first time we called 111 and they called paramedics. That time they determined it was, again, a severe migraine and recommended two other pain medications to try in the hope that they’d be more effective than Nurofen.
A couple of migraines later, with minimal help from the new painkillers, I had another really bad one, which had us calling 111 and they sent paramedics (both such lovely guys who fell in love with the cats and talked musicals with me while they did their tests). This migraine was slightly different: it had all of my normal migraine symptoms but I also had this almost blinding pain at the front and right side of my face. They thought it was probably a migraine but suggested talking to my doctor about having a CAT scan and/or whether there was something going on with my cranial nerves. They also had some practical, experience based advice around pain relief (one of them had personal experience with severe migraines). They said they could escort us to the hospital on the off chance that a doctor would do a CAT scan but did acknowledge that they might just take blood and keep me there while it was checked again, like my previous visit to A&E. So we chose the second option: Mum was going to go out and get the new medication option and call my GP ASAP.
That was the most recent migraine (at the time of writing this). As time passed, the pain in my head started to decrease, then my face, settling in my back-top-right teeth; every time they – and finally just one (after about a week) – knocked against the bottom teeth, the pain was so bad that my entire body would freeze up.
As soon as it had settled in my teeth, we’d called the dentist and they brought me in as an emergency (a few days wait rather than a few months). The dentist checked, took x-rays and saw some decay in the painful tooth, fairly close to the nerve root, and it already has a pretty big filling in it. At one point, somehow, the hEDS diagnosis came up (I was diagnosed since my last dental appointment) and the dentist said that she’s seen and heard about multiple people with a form of EDS (or who were later diagnosed with it) struggle with tooth decay, as well as being scolded by their dentists for not doing a good enough job with their dental hygiene even though they actually were; it was often the EDS causing problems, not necessarily their actions. This really is the diagnosis that keeps on giving (imagine a sarcastic snort at the end of that sentence).
Anyway, she diagnosed an abscess and gave me two treatment options: extraction or root canal therapy, which would involve multiple, multi-hour sessions that would be painful, ultimately might not work, and probably wouldn’t last into my late thirties. The whole thing felt pretty overwhelming and I ended up in tears. Extraction was the obvious choice as far as I was concerned and everyone else agreed; there seemed to be way too many downsides to the root canal option (plus it sounded horrendous and I find dental work, even fairly straightforward stuff, very distressing) and even if I was inclined to choose it, it’s the worst possible time given the end of my Masters. Even an extraction is going to be a significant disruption. I’m applying for extenuating circumstances, which both my supervisor and module leader have encouraged, so hopefully that’ll mean I end up with the same amount of time to do the work as everyone else.
So, I’ve been referred for an emergent extraction under general anaesthetic but I don’t know when that’s going to happen. They also prescribed me some antibiotics for the mean time. Now it’s a waiting game. But several days after the appointment, either the antibiotics are working or the nerve is dying or both because the pain is getting better and I feel more human. There are periods of time where I can actually ignore it, which is a huge deal considering how much pain I’d been in. So that’s definitely something to be grateful for.
BLOOD PRESSURE MONITORING
A couple of months ago, I had an appointment with a doctor from a neurology unit in London, which I believe I mentioned in this post. After spending most of the appointment vehemently telling me there was no point in getting any tests, he somewhat reluctantly offered to write to my GP, suggesting I have my blood pressure monitored for twenty four hours. It took forever to get a monitor from the hospital but finally test day came.
I had to go to the hospital where they fitted the monitor (found the right size for my arm, wrapped me up, made sure it was taking readings, looped the cable behind my neck, and used the tie from my coat to secure the monitor/data recorder around my waist) and gave me the instructions and paperwork to go along with the monitor. I wasn’t allowed to get it wet so I couldn’t have a shower while wearing it but since that’s when I usually get my blood pressure related symptoms, we devised a plan where I would go through the motions – with the shower on to create the heat and steam – so that it would still record whatever was happening to my blood pressure during a shower, as much as possible at least. The whole process was relatively stress free and the two women who sorted me out were great, warm and extremely competent but flexible to my needs. I’m really grateful to them for making it so easy.
All done, we headed home. It was a bit weird with the weight of the monitor, the too long cable getting caught on stuff, and so on but overall, it was fine. The cuff got very tight – tighter than I remembered them getting when you get a one off test – but it wasn’t a big deal and the rest of the day went on as normal. It was a bit of a struggle to get to sleep because I couldn’t get comfortable with the cuff on my arm but once I did get to sleep, the inflating and squeezing didn’t wake me up, something I’d expected to happen.
However, when I woke up, my arm was really sore. I felt like I’d been punched a hundred times in the same place, convinced the skin was bruised underneath the cuff (it wasn’t and no bruise ever emerged but damn, it was tender). I think the cuff had slipped in the night as well because I had several error readings on that second day.
I had my pretend shower and, as usual, felt shaky, dizzy, and lightheaded; having thought ahead, I’d timed things so that the monitor would be taking the reading right at the end of my fake shower. I’m intrigued to see what that reading says. That done, Mum helped me wash my hair, leant over the side of the bath; I had an online meeting and couldn’t bear the thought of doing that with unwashed hair. It wasn’t very dignified, especially with all the extra towels wrapped around me to keep the monitor dry, but it got the job done.
I wore it for the rest of the twenty four hours and then, with great relief, unwrapped the cuff. By the end, my arm felt really sore from the squeezing, plus it had started to pinch in various places at some point. There’s also that Autism-sensory-thing of wearing something constantly constricting, which starts causing anxiety after certain periods of time, like a long day in skinny jeans or wearing my retainer all day. Does that make sense? The anxiety had been building for the last few hours and it was wonderful to take it off.
Mum dropped it back at the hospital, so now I guess it’s another waiting game. I don’t know when we’ll find out the results and the conclusions drawn from them. I assume that they’ll let us know at some point, although it wouldn’t be the first time we’ve had to chase results. As I said, all we can do now is wait.
So, yeah, hectic. At a very inconvenient time. But that’s life and I’m determined not to let it spoil the last of my Masters and this project that I’ve been looking forward to for so long. I am going to make the most of every good day I have, take the extenuating circumstances gratefully, and continue working as hard as I can.
Category: diagnosis, event, medication, treatment, university Tagged: a&e, blood pressure, blood pressure monitoring, dentist, health, hospital, masters degree, masters degree year two, masters part time, migraine, migraines, pain, paramedics, physical health, physical pain, student, tooth pain, university
Posted on March 27, 2021
This post feels like it has been a long time coming but I didn’t want to post anything before I had more to say than ‘I’m in pain’ and, at long last, I do. But first, context: I started struggling with chronic pain about halfway through the first UK lockdown, early last year, and it’s been really, really tough. But recently I finally got some answers and started to get some support. And while it’s not a journey that’s over – if that’s even a possibility – I’ve come far enough that I feel like I can talk about it with a certain level of knowledge and emotional distance. So, here we go…
It started out as sporadic pain in my left hand and arm. I’ve experienced this on and off before, due to my extensive writing and my compulsive hair pulling, so I wasn’t overly concerned. Waking up to my hand being numb and tingly was unusual and a bit unnerving but given how much I was writing and how much hair I was pulling out – both of them being outlets for stress – during that first lockdown, I figured that I was just straining that arm a bit more than usual and that it would probably go back to normal as my anxiety decreased.
But then I started developing an ache in my left leg. I don’t really know how to explain it but it felt like it was coming from somewhere deeper than the centre of my leg, deeper than was physically possible. And then what started out as a painful but sporadic ache turned into attacks of debilitating pain, like electric shocks shooting through my leg at random. They were (and are when they still happen) excruciating and had me collapsing on the floor every time, sobbing or even screaming. There were a few so bad that I ended up hyperventilating so hard and long that I nearly passed out. And if that wasn’t bad enough, both the ache and random electric shock attacks spread up to my lower back. None of the common painkillers did anything and I was living in constant fear of the pain hitting me with no warning.
Eventually I was prescribed painkillers but I could only take them for a few days at a time to avoid their addictive nature. They actually – FINALLY – helped; it was such a relief. But the days in between were miserable and the painkillers I was taking in between was barely making a dent. I was also referred to Rheumatology at the hospital.
That was in May (of 2020) and I had to wait until December for an appointment. While, objectively, I can completely understand that, given how overworked hospitals are due to the pandemic, the waiting was also horrendous: I was in constant pain and desperate for help. It was hard to be patient, especially when it was affecting my education because the pain was so bad that I could barely play any of my instruments. It was a really hard time, and that was without all of the COVID-19 and other life stuff.
Eventually the appointment arrived. We didn’t learn much but it got things moving. The hypermobility diagnosis was confirmed and the possible diagnosis of Fibromyalgia was dismissed. I was referred to various departments, including Occupational Therapy, Hydrotherapy (although the consultant wasn’t sure when it would be available due to the pandemic), and, after discussing multiple different medications (many of which I’ve already taken and had negative reactions to), Pain Management. The consultant recommended I have an ECG every five years or so as heart problems can occur with connective tissue disorders and booked my first one for me, as well as an MRI, just to double check my back. She said we’d have another appointment in three months, after the ECG and MRI (it’s been more than three months at this point but I’m hopeful it will be soon since I’m still in a lot of pain).
After the wait for that appointment, I was expecting to wait for ages but we received a call about the MRI less than a week later. The woman who arranged it for us was really thorough and really aware of what might be helpful for me as an autistic individual, suggesting and putting in place so many things to reduce any of my anxiety; for example, I could have Mum in the room with me, I could play music, I could hear the sounds the MRI made before getting in it, she suggested taking Diazepam first, and so on. So that was really helpful. Surprising (I don’t think that’s ever happened before an appointment or procedure before) but very helpful.
The MRI itself was actually a really interesting experience. It was completely manageable and I actually found it quite soothing in a weird way. And, of course, my musician brain couldn’t help but wish I could sample the different sounds the MRI made to use in various tracks. It was over pretty quickly and the whole process was super efficient. I really want to see the images; I don’t know if she’ll bring it up but I’m gonna ask the consultant if I can see them at the next appointment. I’m weirdly intrigued. I mean, I’ve always been kind of fascinated by how my body works specifically (seeing my brainwaves was super cool, for example, and one day I’d love to see images of my brain) so I’m just really curious about what my spine looks like. Like every other spine, I’m sure, but I’m still curious.
(Throughout this time I had been swimming where possible – according to what felt safe and as lockdown allowed – and I’d started incorporating the basic hydrotherapy exercises that the hypermobility specialist had recommended.)
I was prescribed a new daily pain medication but I didn’t really feel like it helped (and I’m still not convinced that it’s actually doing anything helpful). The only thing that helped – and still the only thing that helps is the painkiller that I can only take for a few days at a time; it’s the only thing that has consistently given me pain free periods of time. But, as I said, I can only take it for a few days at a time and the other days are pretty awful.
Around New Year (2020-21), I noticed that the pain was spreading and by the end of January 2021, I was struggling with pain from my toes all the way up to my neck. I rarely experienced pain in my whole body all at once but it had reached a point where there was practically no area of my body that didn’t experience this specific type of pain and often for extended periods of time. My hands, arms, lower back, and lower legs were the worst.
I began Occupational Therapy in February for the pain in my hands. The therapist gave me compression gloves (I have tiny, skinny hands and so they turned out to be too big and I had to buy a smaller pair) and a series of ‘gentle’ exercises that would supposedly allow me to control the hyperextension in my fingers. Right from the start they were painful and I had to drop one of them straight away; it just hurt too much. But I worked hard at the others, whilst simultaneously trying not to work too hard and accidentally regress.
The therapist also discovered that the Pain Management referral hadn’t gone through and put a rush on it – apparently, because the pain is directly affecting my education, I should move me up the waiting list more quickly than if I wasn’t currently doing my Masters. So I guess that’s good news. Hopefully it makes up for the time lost with the referral not going through. She also had some suggestions around swimming during lockdowns, which unfortunately didn’t come to anything but it gave me hope and it was something to work on. That was better than just waiting.
In the following OT session, we talked about the pain caused by the exercises and she reduced them to every other day, which has been better, but I’m still in pretty much constant pain to some degree. But she was pleased with the progress I’d made. Unfortunately though, she thinks I’m probably in the group of people that take the longest to see real change. That’s not massively surprising to me – I’ve been in similar positions before – but it’s still frustrating. Like, out of all of this stuff, couldn’t one thing not be super hard? Couldn’t one thing have the best possible outcome? Anyway. It’s pointless to speculate about that stuff; it’s not like I can change it.
I’d been doing some research on hypermobility but as far as I can tell, it’s a symptom rather than a condition or disorder, like Joint Hypermobility Syndrome or Hypermobile Ehlers-Danlos Syndrome. And since only ‘hypermobility’ had been mentioned up to that point, I asked what my actual diagnosis was and after some conferring between the various people involved, they agrred on a Hypermobile Ehlers-Danlos Syndrome, which explains both the chronic pain and the chronic fatigue (I don’t know what this means for the Chronic Fatigue Syndrome diagnosis – at some point, we’re all going to have to sit down and work out which diagnoses are still relevant and which are now out of date), as well as multiple other problems. So there was this huge rush of relief and that lasted several days before I just felt overwhelmed. It’s an experience I’ve had before: finally knowing is amazing but then the reality of it all sinks in and it’s just a lot to process. Life is suddenly different. It’s not what you thought it was. So, yeah, it’s a lot. I’m sure you know what I’m talking about if you’ve been through a similar experience. But I’m getting there. The dust is starting to settle.
We’re still waiting on some of the other things, like the Pain Management referral and the second appointment with the Rheumatologist. And I’m continuing with the OT; I’ll be graduating to a new set of exercises soon. I’m also super excited to swim again when it becomes possible. We’ve already got several slots booked at our favourite pool. Plus, I’m due to get my first COVID vaccine soon, which will make me feel safer about swimming, even at this pool that takes the safety precautions so seriously.
So this is where we are. As I said, I didn’t want to write this post until there was a natural stopping point in the writing of it. And this seemed to be that moment: we have the beginning, the diagnosis (or diagnoses), and now we have the treatment. Obviously that’s ongoing and there are still different areas to pursue for support. So, I guess, all we can do now is see how things go and hope the pain improves.
Category: chronic fatigue syndrome, covid-19 pandemic, diagnosis, medication, mental health, treatment, trichotillomania, university Tagged: career, cfs, chronic fatigue, chronic fatigue syndrome, chronic pain, compression gloves, coronavirus, covid-19, covid-19 vaccine, diagnosis, ecg, eds, ehlers danlos syndrome, fatigue, heds, hydrotherapy, hypermobile ehlers danlos syndrome, hypermobility, lockdown, lockdown 2020, masters, masters degree, medication, mri, music, occupational therapy, pain, pain attacks, pain management, pain management referral, painkillers, pandemic, pandemic 2020, physical pain, rheumatology referral, singersongwriter, songwriting, swimming, university
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder (ASD), ADHD (Inattentive Type), and Hypermobile Ehlers-Danlos Syndrome (hEDS), as well as several mental health issues.
I’m a singer-songwriter (it’s my biggest special interest and I have both a BA and MA in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is on all platforms, with all proceeds going to Young Minds.
My debut EP, Honest, is available on all platforms, with a limited physical run at Resident Music in Brighton.
I’m currently working on an album about my experiences as an autistic woman.