Posted on May 21, 2022
After I was diagnosed with Hypermobile Ehlers-Danlos Syndrome, my Mum and I did quite a bit of research. There were a lot of things that suddenly made sense and one thing that caught our attention was mention of autonomic issues, like dizziness, fatigue, chronic pain, brain fog, problems with heart rate and blood pressure… These were all problems I’ve either struggled with or had investigated in the past so, with the hEDS diagnosis and the help of my GP, we started following that path to see if it yielded any answers.
As you can see, this post has been a long time in the writing. I didn’t want to post anything until I had something to say really, beyond descriptions of the tests, but then it all just went on and on and on. Everything moves so slowly and it’s very draining. I have to hope that things are better for knowing what I’ve learned from all of this but it’s also been a very trying, sometimes traumatic experience.
It began with a phone call appointment with a neurologist, a specialist from a neurology unit in London (which I talked about in this post). It wasn’t a fun experience. The call came two hours late, it wasn’t the person it was supposed to be, and then he spent twenty five minutes of the half hour call telling me that there were tests that they could do but that they’d probably be a waste of time. It just left me feeling really confused and upset. He had eventually said he’d write to my GP about doing some tests but after the way he’d been talking, I didn’t feel very hopeful about it all. After he hung up, I didn’t quite have a meltdown – it was like I didn’t have the energy that a full on meltdown requires to happen, like a rocket needing a certain amount of fuel or whatever to launch – but it was close.
Despite his apparent reluctance, the neurologist did in fact write to my GP and the blood pressure monitoring was arranged. It took forever – I think because of a shortage of the monitors – but the day did eventually arrive (I wrote more about it in this post). I went to the hospital to have the monitor fitted and to get all of my instructions; the whole thing was relatively chill (not my general experience when it comes to the medical field) and the two women who went through it all with me were really great.
It wasn’t too bad. The cuff got very tight so it was hard to forget it was there and just do the day as normal but it was fine. I did find it hard to get to sleep but the squeezing didn’t wake me up, which I was grateful for. My arm did hurt like hell in the morning, like I’d been punched repeatedly; I was convinced my arm would be bruised afterwards but it wasn’t. I couldn’t get the monitor wet so I couldn’t have a shower until after I returned it but since that’s usually when the blood pressure related symptoms present, we faked a shower: I stood for the same amount of time in the bathroom with the shower on (so that the hot, steamy environment was the same as if I were having a shower) and let the monitor take its readings. I felt shaky and dizzy and lightheaded so it should have read as if I really had had a shower.
I got through the rest of the twenty-four hour period and then took it off, to my great, great relief. My arm was sore from the squeezing and the cuff was pinching in various places. I also had that Autism thing where the constant pressure for so long was causing me anxiety, like wearing my retainer for too long. The anxiety had been growing for most of the second day so I was very relieved to be free.
The second round of monitoring involved a little stick-on patch with sensors over my heart, which had a little monitor that could be attached (and then detached for a shower) to measure my heart rate. I was supposed to wear it for a week and while it wasn’t exactly comfortable and sleeping with it attached wasn’t great, the first few days went smoothly for the most part.
But, after several showers, the patch started to peel off. The sensation of it constantly brushing my skin and the itchiness of the glue (or whatever it is) as it disintegrated was quickly overwhelming and I was regularly finding myself in meltdown territory. It was creating so much anxiety that we got in contact with the people who’d sent it and they said that after roughly four days of readings, it would be fine to take it off, that they would have enough data. Removing it actually really hurt and I think me and my super sensitive skin had some kind of reaction to the adhesive because it kind of looked like I’d been burned where the patch had been for a couple of days after.
Alongside the blood pressure and heart rate monitoring, there were a series of other tests but it was a while before I got the letter to tell me that they’d been scheduled. The first of the two appointments was in August and was a bit of a mixed bag as an experience. Despite the letter from my GP that said I’m autistic and have an anxiety and therefore need to have someone with me for hospital appointments, the receptionist almost didn’t let my Mum come in with me. I was somewhere between walking right back out and having a panic attack (said receptionist actually asked me if I was okay, which I thought was a bit rich) but fortunately it was all sorted out and after a little bit of time to collect myself, the testing went ahead. The doctor for this particular appointment (I don’t think I’ve seen a single doctor more than once through this entire process) was nice and didn’t rush me at all after the somewhat upsetting start.
The testing was fairly straightforward. They wrapped me up in monitors (I’m not going to lie – I kind of loved all of the hand ones for taking my pulse and stuff because it kind of felt like I was having superpowers measured or something, which was much more fun to think about) and then ran me through a series of tests: standing for certain periods of time, breathing exercises (which reminded me a lot of the warm up exercises I used to do during singing lessons), squeezing an inflated pressure cuff (my hypermobile fingers made this one pretty difficult), and so on. There was still the tilt table test to go but I had to come back on a separate day for that one.
Just like with the day of blood pressure monitoring, they didn’t tell me anything about the test results. Once they had all of the data from all of the tests, they’d call me in to discuss it all. I could understand that but it was frustrating when the whole thing was taking so long.
Late September, I was back at the hospital for the tilt table test. I was all wrapped up in the monitors again and they strapped me (not uncomfortably) to the exam table so that when it moved from horizontal to almost vertical, I wouldn’t slide or fall. Everything was fine while I was lying down and they got all of their readings and then they adjusted the table so that I was almost upright.
It took about twenty five minutes before I started to feel noticeably bad. Like, more than just not great. My hands felt numb and tingly, my legs were shaky, my chest started to hurt and I got very breathless; they let me take my mask off (everyone else was still masked and I’d tested negative before going to the hospital) but I was still breathing too fast, on the way to hyperventilating. While they had an approximate end time for the test, they decided to stop there; presumably they had the information they needed and I was honestly relieved to lie back down for a few minutes. I was breathless for a long time, my head hurt, and I was pretty nauseous. I had to sit for about ten minutes before I felt solid enough to get up and back to the car.
A week later, we were called in by the cardiologist to go over the results. It was a frustrating appointment: my information wasn’t there and we had to wait while the doctor called around and tried to get a hold of it all and then, when he got it, he waffled a lot without really saying anything so getting a clear explanation wasn’t easy. As far as I can tell, my heart rate goes a little haywire when I stand for a long time or exercise too vigorously. The cardiologist diagnosed me with Postural Orthostatic Tachycardia Syndrome and prescribed me Propranolol to help with the symptoms. I’m not sure we’ve managed to get the dosage quite right yet but it is now in the right range and has been helping a bit: I’m less dizzy and breathless although that hasn’t gone away entirely (yet, hopefully).
We had been offered more thorough testing at UCLH in London and we figured that it couldn’t hurt to have more information, especially from an institution that apparently has more knowledge and understanding, better resources, and so on. I was in and out of there for two days (ish), doing tests and helping them gather data on whatever weird thing is going on with my autonomic system. It was a lot but I was cautiously optimistic that what we learned would make managing the symptoms easier.
DAY ONE – We had to be there super early, which was a real struggle because the ADHD meds were seriously messing with my sleep, but I did somehow make it on time. Despite my doctor’s letter, the people at the desk and then the nurse didn’t want to let my Mum in with me. I was ready to walk out – I’ve been traumatised enough times by medical personnel that I wasn’t keen to add another tally mark to that particular chart – but Mum managed to talk to them and get them to understand. I was fitted with a blood pressure monitor, like the one from my first test, and gave me a diary to keep for the next twenty-four hours. It was similar to that first test but it required a lot more detail in the recording: I had to do certain activities at certain times, which were recorded by the monitor. It was quite a stressful and exhausting day, with the monitor bleeping continuously. I was incredibly tired (I fell asleep on the sofa more than once) and I struggled to keep up with the activities they wanted me to do – it feels like the ADHD meds have fried my brain somewhat. And then, because my sleep was so messed up, I didn’t get to sleep until after three.
DAY TWO – Waking up and get to the hospital for eight am was excruciating and the fact that I was only about ten minutes late was a miracle. Fortunately, they weren’t completely on time either. The testing that day was all done in the hospital, in one room, with one woman who was, fortunately, really nice. I spent most of the appointment lying on the exam table, hooked up to various monitors and performing different tests. Quite a few were the same as the first tests I did but there were some new ones too, like having my hand wrapped in an ice-pack for what felt like ages (although it wasn’t actually that long but my god, my hand hurt afterwards). She tried to draw blood for additional information but she couldn’t get a vein in either arm (I think that may have been due to the fact that I’d been lying down for a couple of hours at that point and so my blood pressure was weird but I’m not a doctor so what do I know) and that was uncomfortable with nothing to show for it but oh well; it apparently was a bonus if they got it.
The last part was the tilt table test and I wasn’t as affected as I had been the first time I’d gone through it but it still wasn’t pleasant. And after that, I was done. After lying (and then standing) in one position for so long, I was really stiff and my hip and knee joints were so sore that I could barely walk. I was absolutely exhausted. I made it back to where we were staying and fell asleep on the sofa straight away. I woke up for food (I hadn’t been able to eat before the appointment) and then went straight back to sleep. I was utterly drained and it took me a few days to recover fully.
Again, they didn’t have all of the results for me at the end of the appointment: those would go to the team meeting that was within the next two weeks and then they would call me with a plan, another appointment, or whatever. I think it’s safe to say at this point that my expectation of it taking more than two weeks was correct.
UCLH sent a letter with a brief explanation of their findings and a time for a follow up call where they would explain those findings in more detail and discuss next steps. That took a while to schedule because of other commitments so it didn’t happen until May.
It was a short call but the nurse was really nice and so knowledgeable. She ran through the test results and what they showed and confirmed the diagnosis of Postural Orthostatic Tachycardia Syndrome. She explained the effects of the Propranolol in more detail and said that I would be receiving an invitation to their next online meeting about managing the symptoms of POTS, which will hopefully be helpful. And on top of that, she gave me a few tips to try in the meantime. So it was a good appointment and I’m looking forward to seeing if her tips help and to the meeting, which should be within a couple of months or so.
So now I’m waiting to hear about the online meeting. I haven’t had many good experiences with sessions like these but I’m nothing if not chronically optimistic; maybe this one will be better. But just knowing that POTS is the cause of the symptoms is a step forward. And the Propranolol seems to be helping although I’m not sure that we’ve got the dose quite right yet.
I wanted to write and post more about Borderline Personality Disorder during BPD Awareness Month but I’ve been really struggling with my depression and changing medications and it’s all been a bit too much; I’ve found it hard to write anything at all. I’m still trying and hopefully I’ll have something BPD related up next week, plus I have a few other posts that I’ve started that I hope to finish and post in the not too distant future.
Category: chronic fatigue, diagnosis, heds, medication, pots Tagged: adhd medication, autonomic, autonomic testing, blood pressure, blood pressure monitoring, cardiologist, chronic fatigue, chronic pain, dysautonomia, eds, ehlers danlos syndrome, fatigue, heart rate, heart rate monitor, heds, hypermobile ehlers danlos syndrome, iclh, medical tests, medication, neurologist, postural orthostatic tachycardia syndrome, pots, propranolol, tilt table, tilt table test
Posted on March 12, 2022
TW: Mentions of self harm and suicidal thoughts.
In the last week of January, my psychiatrist told me to stop taking the Bupropion since it was so obviously having such a detrimental effect. In theory, after the wash out period was complete, I’d start taking a new antidepressant, Moclobemide. It’s an MAOI, like Phenelzine (the antidepressant that I’ve ever had the best response to – the only one I’ve had a halfway decent response to), so my psychiatrist thought it was the best option. But I was so depressed that I just couldn’t take it: knowing how these medications affect me, I just didn’t feel emotionally capable to handle the change.
But then, after a hellish few days and some kind of breakdown, I started taking Moclobemide. At that point, it was self preservation: I didn’t want to but I knew that I couldn’t keep feeling that awful – or worse – because something terrible was going to happen if something didn’t change.
This change was somewhat complicated by the fact that I was taking other medications at the same time. I was taking a lot of Diazepam with my anxiety so bad and I was also taking 20mg of Propranolol (recommended for anxiety and POTS – which was diagnosed by a cardiologist after a first round of tests – although I’m not sure it’s doing anything for either).
As is always the case with posts about medication, this is just my experience. Please don’t start, change, or stop taking any medications without the advice and support of a medical professional.
WEEK 1 (150mg twice daily)
The first week was bad. I was completely overwhelmed by my anxiety and needed constant Diazepam to be even vaguely functional, just to get out of bed. I was very depressed, feeling exhausted and hopeless and worn down. I was still having thoughts about self harm and suicide although not as much as I had been but I just felt utterly overwhelmed, by everything the world wants from me. Life just felt like too much.
I was still struggling to fall asleep (there was one night when I was still awake at seven thirty am). My sleep schedule was completely fucked up; I was almost nocturnal. And even then, I was falling asleep in the day, regardless of how hard I tried not to. As I said, it was a whole mess. I was exhausted all of the time.
My struggles with food continued too. I could barely eat and on the rare occasion where I did feel able to eat, nothing appealed – at all – or satisfied the feeling. But between my mental health and my sleep issues, food felt like the least of my problems.
I also spent more than half the week with at least a low level migraine, which wasn’t exactly pleasant.
The second week was also pretty tough, although in a few different ways.
I was still feeling very anxious – the Diazepam was only doing so much – and my depression was still very present. I just couldn’t engage. I was miserable. I felt very overwhelmed; life just felt like it was too much.
At the beginning of the second week, I started taking Temazepam – prescribed by my GP – to help with my sleep. It gave me a couple of good nights but after that it didn’t seem to do much. Most nights, I was still awake for hours and struggling up in the afternoons; waking up was miserable. I was exhausted and sleepy and kept falling asleep in the day, despite drinking Red Bull, something I haven’t felt I needed in ages.
I did have one pretty intense day: despite only getting about three hours sleep, I was up early and writing a song from start to finish – something I haven’t been able to do in months. It’s usually a sign of how good or bad my mental health is: things are getting bad if I can’t write. I’m not jumping for joy just yet but I am cautiously optimistic that if this is possible, things are improving. I felt really good for a couple of hours but then all of the bad stuff crept in again: I went to bed feeling exhausted and overwhelmed by my anxiety and depression.
At the end of the week, I spent two days in and out of a hospital in London, having tests done (I wasn’t taking the Propranolol for a few days as advised so that it wouldn’t affect the results). Just being in the hospital and the staff’s general lack of understanding around Autism was stressful and frustrating and exhausting. The first day was quiet but it was hard to relax with the blood pressure monitor going off every twenty minutes. The second day was more involved with more than three hours of tests. It was exhausting – I could barely stay awake for the rest of the day – and my whole body hurt afterwards, so badly that even getting upstairs when we got home was a struggle. I don’t have a whole lot of faith that these tests will show anything different than the first round (which resulted in the POTS diagnosis) or in medical tests in general anymore but I guess we’ll find out what they say in a few weeks.
At the beginning of the week, I officially gave up on Temazepam since it didn’t really seem to be doing anything. My GP had prescribed melatonin for when the Temazepam ran out so, with her blessing, I started taking that instead. It definitely improved my ability to sleep: after months of being awake for hours on end, I was falling asleep within half an hour every night. But I was still sleeping late – into the afternoon – and feeling sleepy in the day. I had several RedBulls in a week for the first time in months, which is a step backwards that I’m not happy about. I don’t know whether it was the melatonin or a side effect of the Moclobemide (not unlikely since I had the same side effect with Phenelzine) but, regardless, I hate it. This was one of the reasons I was so excited to try the ADHD meds; I thought I might finally feel something other than exhausted or sleepy or tired.
My chronic pain kicked up again, which was deeply unpleasant. My whole body hurt all week: every joint felt ache-y and crunchy and grind-y. I took painkillers throughout the day but the pain woke me up at night almost every night. But the only painkillers that help are ones that I can only take for a few days at a time and when those three days ran out, I was back to Ibuprofen and Paracetamol – neither of them do much – which was miserable and so frustrating: this has been going on – on and off – for almost two years and all I have are sporadic three day periods where I’m somewhat pain-free. The lack of progress is enough to reduce me to tears.
Mental health wise, things were up and down. Some days were okay and I actually got things done for the first time in ages, but some days were really hard. My anxiety was still bad and I was restless and uneasy; I didn’t know what to do with myself. I just felt like I was making everything I worked on worse. I was depressed, feeling overwhelmed and hopeless.
WEEK 4 (450mg daily)
I was sleeping but sleeping restlessly and waking up a lot. And come morning, it was such a struggle to wake up. I would fall asleep again and again; staying awake felt impossible. I don’t know if that’s the melatonin or something else but it’s pretty miserable. I feel like I cannot open my eyes, cannot make my hands work. It’s not fun. At the other end of the day, things are generally better. It can take a while to get to sleep but it’s nothing like it used to be. It can take a while to get comfortable, wind down, relax but I’m still getting to sleep easier than I was without the melatonin.
In the daytime, I was getting sleepy within an hour of getting up and drinking Red Bull almost daily again. It’s not something I want to make a habit of but I was just too tired to figure out what the right thing to do was so I just focussed on getting through the day. But even with the Red Bull, I was tired and sleepy and all I wanted to do was close my eyes. Again, I don’t know if this is the melatonin or the Moclobemide but either way, I don’t know what to do. If it’s the melatonin, I can stop taking that and hope my sleep stays okay but if it’s the Moclobemide, then I’m pretty stuck. I really don’t want to spend my whole life feeling tired and sleepy because this is the only medication that works.
I’ve started working again – a bit, given how unpredictable everything’s been recently – after being completely unable to since the end of last year. That’s been good and hard (and completely exhausting) in equal measure, socialising too. It’s nice to be in contact with people again but so often, at the moment at least, it also makes me feel defective and broken. My friends are telling me about their jobs and their relationships and so on and all I have to talk about are the new meds I’m trying and the new therapy I’ve been thinking of trying. When you’ve been depressed and suicidal for the past four months, there aren’t a lot of light and fun conversation topics to reach for. So I just felt very lonely. I’m not putting that on my friends – I want to hear about their lives – but the disconnect is hard.
My chronic pain was bad too. My whole body was hurting, my joints aching, even my fingers. I still haven’t heard anything from the Pain Clinic so all I’ve got are over the counter painkillers that I can only take for a few days at a time. What I’m supposed to do on the other days, I don’t know; nothing else helps at all.
I’ve realised that I’ve been feeling cold a lot, pretty much all of the time. I’m not sure when it started but it’s been going on for a while. Even with a thick jumper, a scarf, wooly socks, and a blanket, I’m freezing.
Mentally, it was a tough week. I felt very anxious and overwhelmed. My depression was pretty bad too, although not as crippling as it has been, and I was just miserable really. I cried a lot. So, yeah, a tough week.
WEEK 5 (600mg)
My energy and sleep continues to be troublesome. It’s so hard to wake up in the morning: I keep going back to sleep, I can’t keep my eyes open, and my hands won’t work. I’ve found that eating right away helps but I hate it as a strategy; food is the last thing I want right after I wake up. Despite the difficulty, I have been managing to wake up earlier than I have been over the last few months and getting to sleep has been a bit easier (with the help of the melatonin – although it does sometimes feel like I have to focus really hard on falling asleep sleep, which seems to be somewhat counterproductive). But I was still very sleepy during the day, falling asleep accidentally a couple of times, and so tired, although it was a busier week. I was doing more, socialising more, and feeling everything more intensely. There were some really good moments but it was hard too.
And, of course, more activity has resulted in more pain. I’ve been in pain constantly but it’s gotten worse. Multiple long car journeys and more time on my feet has caused problems with my back; I’m sure that with time, sensible exercise, and slowly building up my stamina, things will get better but it’s really hard to be patient. The pain has also been really bad in my hands (from my elbows down to my finger joints), which instantly instills a cabin fever-like feeling inside my own skin. I’m still waiting to hear from the Pain Clinic but experience doesn’t exactly encourage high hopes for what they’ll come back with, if they ever do.
My mental health has been all over the place. Five weeks of this medication and I still don’t feel like I’ve got my head on straight. As I said, I’ve had some good moments this week but I’m still struggling, more than I feel like I should at five weeks of a medication. I’ve had a lot of anxiety and my depression is still very present. My suicidal thoughts aren’t as constant as they were but they are still there. I guess, I just would’ve hoped that, at this point, I’d be feeling better mentally. It’s hard to not lose hope.
So, I’ve been taking Moclobemide for five weeks and while things are very different from day one, I’m still not feeling great. My depression is still a constant, day-to-day battle, which is one thing if I’m waiting for medication to kick in and for it to get better but if this is it, it’s not enough. I’m grateful that things are better – that I can write songs again – but living like this is really, really hard. I just want to feel better. I don’t want every day to feel like a mountain that I have to climb. I guess, I just want to feel normal. Although, having said that, I don’t know if I even know what normal feels like.
Category: adhd, anxiety, autism, chronic fatigue, depression, emotions, food, heds, medication, mental health, music, self harm, sleep, suicide, treatment Tagged: adhd medication, antidepressants, anxiety, bupropion, caffeine, chronic fatigue, chronic pain, creative block, depression, diazepam, drowsiness, eds, heds, hypermobile ehlers danlos syndrome, hypermobility, insomnia, loss of appetite, maoi, maois, medication, mental health, mental illness, migraine, migraines, moclobemide, pain, pain clinic, pain management, pain medication, phenelzine, pots, propranolol, red bull, self harm, self injury, sleep, sleep schedule, sleep wake cycle, sleepiness, songwriting, suicidal, suicidal ideation, suicidal thoughts, suicide, temazepam, trigger, trigger warning, tw, writers block, writing
Posted on October 23, 2021
I love every season but by the end of it, I’m always ready for the next one. But, as a neurodivergent person with multiple physical and mental health conditions, different seasons present both different excitements and different challenges. With winter around the corner, I thought I’d share some of the good things and some of the difficult things, along with how I’m learning to cope with the difficult things. This list is, of course, specific to me and my location so it’s not going to match everyone’s experience but hopefully they’ll be something useful to you in here, even if your experience of the season isn’t the same as mine.
I don’t know if this is helpful but when I sat down to do some research for this post – to see what other autistic/neurodivergent individuals find good and difficult about winter – I couldn’t find anything for autistic adults. Everything I found was directed at parents helping their children to adjust to the change in season but that doesn’t just go away as we grow up, although the challenges might change. So, since I couldn’t find a single post or article relating to adults, I felt it was all the more important to write something on the subject. So I hope this has been helpful in some way. Let me know what you would include on your list or how you manage the seasonal change!
Category: about me, animals, anxiety, autism, covid-19 pandemic, depression, emotions, family, food, heds, holidays, mental health, tips Tagged: anxiety, asd, autism, autism spectrum disorder, autistic, autistic adult, cat, cats, christmas, christmas tree, chronic pain, claustrophobic, clothes, cold, coronavirus, covid, covid-19, daylight, depression, destress, dysautonomia, eds, ehlers danlos syndrome, family of cats, fire, fires, food, fresh air, friends, heat sensitivity, heds, hypermobile ehlers danlos syndrome, ice, mental health, mental illness, my cats, neurodivergent, noise, noise sensitivity, pain, pandemic 2020, postural tachycardia syndrome, pots, senses, sensory information, sensory overload, sensory sensitivity, snow, stress, sunshine, temperature, temperature dysregulation, temperature regulation, vitamin d, vitamin d deficiency, vitamin d supplements, winter
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.