Hitting rock bottom - how much can a person take?
I had a look around and found a Swedish sleep neurologist at London University College. She works next to Dr Matthew Walker, known by many who have seen him about Restless Legs Syndrome (however, from what I understand, his approach is conservative). Incidentally, I was referred for a sleep study under him in 2013 but was unable to arrange attendance. Maybe that’s as well because I might have been diagnosed with RLS and offered even more unsuitable drugs. Instead I found Chinese herbalism and managed the sleep problems really well for a few years.
I took a chance and approached his colleague with some information about my case, in Swedish. A few days later I received a curt and dismissive response from her secretary. There was no suggestion as to where I could turn instead. I must admit, the rejection felt really awful. I’m still in withdrawal from buprenorphine and get stressed even more easily than usual. But I also felt that genuine sense of being betrayed by a system that’s really just a factory line for common disorders that appear in anonymous bodies. It’s not that I didn’t expect the dismissal, it’s that I finally had to decide to give up trying to be heard by health care. Not just public health care - all health care.
It beats me how a fight and flight based problem like mine can be so poorly understood. AI understands it just fine so clearly the information is out there, but somehow it just doesn’t translate into genuine health care. This is not about anxiety but so much research is focused on this premise. Most of the time I’m just hypervigilant and when I do get triggered, I usually get angry. There must be so many people out there just like me, people who don’t tolerate all the serotonin agonists they throw at us blindly.
Unfortunately a lot of people are determined to hate AI and don’t believe my story because they have decided it’s AI generated. The truth is, I really do not have restless legs syndrome and anyone who wishes to challenge that idea can trawl through my posts and point out any reason why I should be wrong. I’m very clear about which aspect of my conclusion is AI derived and which is not. Ultimately, I know my body but I also understand a few things about neurology. Not massively, but probably more than the average doctor and enough to get an idea of patterns and the deeper reasons for my decades long insomnia. It’s very clear to me how AI works, and we are right to be suspicious and annoyed, but it’s horribly disrespectful to attack strangers and accuse them of AI drivel when there is not even evidence of AI type mannerism, just complex reasoning. AI can certainly deliver some intel if you probe enough but it has very little semblance of initiative and no creativity. I was just lucky that it spotted my misdiagnosis. The conclusions I’ve made on this blog are all mine unless specified as something else.
I’m sorry not everyone can follow my reasoning and therefore decide to troll me and accuse me of AI psychosis, well that’s ultimately their problem, not mine. I do find AI increasingly limited and annoying, and have had to spend a lot of time getting sense out of it, but it’s still been a lot more helpful than any doctor I have ever come across. I have been able to brainstorm in my own time and yes fact checking is always a good idea. Sometimes we’re just too unwell to do that, though. I’m sorry for people who don’t ask the right questions/probes and then think AI is just dumb. It can be but it can also bring things to the table, and in my case it certainly got me out of a really bad physical dependence on an opioid I should never have been on to begin with, and for other people to resent it is crazy. I was never an addict, just a medical casualty, and it’s serious as well.
There seems to be a lot of trolls around who claim to understand LLMs and incidentally have the same disease (hEDS) but gaslight and judge others for seeking artificial help. One was accusing me of spreading misinformation and AI slop about the questionable ‘rarity’ of hEDS. Last night was wrecked because some young transgender woman from America decided to attack me and call my Threads post AI psychosis - when she didn’t like my responses, she continued arguing but prevented me from responding. I wrote about my complex medical problems and the withdrawal, it was about my experience, not GhatGPT derived insights, and it was entirely written by myself. I felt very vulnerable doing so. I barely visit Threads at all, but I did now to try and spread awareness of the kind of problems I’ve encountered and ask people to visit my blog in case they want to know the details. She also said ‘you should see a real doctor’ - well, I did make it clear in the post that I’d seen multiple practitioners and they had all agreed with the misdiagnosis or simply dismissed me altogether. My GP has acknowledged my withdrawal and the reason for it. On her page, the bully had a photo of herself looking drugged in a bath tub, so her aggression was clearly a projection, but I was completely destabilised by it and to be honest, I just wanted to go after her. I hadn’t had a good day to begin with after my attempt to drop quiviviq and so the noradrenaline surge ended up being pretty bad that night. The tinnitus is completely through the roof. That’s the problem: I’m a fighter and I’m very much prepared to go after my abusers, but I can’t afford being one. The withdrawal is amplifying the fight-and-flight responses right now as well. For anyone who doubts that I have at least some understanding of this, here’s an excerpt from a scholarly article:
“Stress response is a nuanced interplay among diverse brain centres, particularly the neural mechanisms responsible for triggering stress reactions, which include the locus coeruleus, limbic system, and hypothalamic efferent activation complex.[7] These components are interconnected through various pathways, including ventral and dorsal adrenergic and serotonergic projections. The complex includes the locus coeruleus, hippocampus, septal-hippocampal-amygdaloid complexes, and anterior and posterior hypothalamic nuclei, serving as pivotal anatomical hubs for visceral and somatic efferent responses to emotional stimuli.[27] Essentially, the amygdala, particularly the central nucleus, plays a crucial role in processing emotional aspects of stress and initiating fear responses. The hippocampus, critical for memory formation, regulates the stress response by providing negative feedback to the hypothalamus, thus modulating cortisol release. The prefrontal cortex, involved in executive functions, including decision-making and impulse control, regulates stress responses through top-down inhibition of the amygdala and hypothalamus.[28] The dysregulation of these brain centers is implicated in stress-related disorders such as anxiety, depression, and PTSD.” [source]
Noradrenaline (norepinephrine in the US) and REMS (REM sleep, typically dream sleep) affect body temperature and correlate with acute and chronic diseases and poor immune system. Insomnia can thus be used as a predictor of disease. Poor REM sleep is correlated with high noradrenaline output in the Locus Coreuleus in the brainstem. The second article specifically mention problems with the thermoregulation and points out that increases in NA correspond with higher temperature. This is interesting to me since I’ve had problems with hot flashes as well as terror (one incident), and anger, hunger, sensory amplification and poorer REM sleep during my NA surges over the past few months.
As NA stimulates metabolic rate[…], it could elevate body temperature and trigger heat dissipation for thermoregulation. It has been suggested that one of the reasons for reduced core temperature during sleep is reduced NA-ergic peripheral vasoconstrictor tone resulting in increased peripheral blood flow and dissipation of heat[…]. Also, NA has been shown to induce hypothermia by acting on α1-ARs in the medial preoptic area[…]. Abnormalities in the body temperature rhythm are associated with insomnia and associated symptoms[…].
[…] Furthermore, many of the neurological disorders, including depression, AD, Schizophrenia, PD, cognition disorders, ageing, attention deficit/hyperactivity disorder, anxiety, post-traumatic stress disorder, etc., are associated with dysregulation of REMS as well as LC-NA-ergic system. As those disorders are generally chronic by nature, the component of those disorders modulated by NA is likely to be modulated directly or indirectly by epigenetic modulation of NA synthesis, or by the factors responsible for modulating the NA level at the synapse. […] The NA is an important and common factor for the regulation of autonomic functions, e.g., cardio-vascular-respiratory systems[…], it increases heart rate, cardiac contractility and vascular tone[…]. Impaired neuronal NA reuptake transporter activity has been reported in hypertension and postural tachycardia syndrome[…]. […] Post-traumatic stress disorder: REMS disturbance is a hallmark symptom of post-traumatic stress disorder (PTSD)[…]; in some cases REMS is reduced, while it is increased in other cases[…]. NA-ergic involvement in PTSD is supported by the fact that pharmacologic stimulation of NA-ergic neurons evoked PTSD symptoms[…] and adrenoreceptors antagonist reduced nightmares and sleep disruption in patients with chronic PTSD[…]. Mellman et al[…] found that heart rate (LF/HF ratio) was higher during REMS of PTSD patient than non-PTSD group. [Source]
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It has been consistently shown in animal studies that the level of NA plays a significant role in regulating REMS, and adequate REMS maintains optimum NA level in the brain. It has been shown that many of the symptoms either associated with diseases where REMS is also affected, or associated with REMSD, are indeed induced by NA. Therefore, subject to confirmation in humans, we propose that REMS loss–associated effects could be ameliorated by reducing the synthesis or elevation of the level of NA and/or by preventing the action of the elevated NA; the former is more desirable though. [Source]
The mere idea that my experience didn’t come across as valid made me unsure about reaching out to help people avoid getting into the same kind of medical loop that I’ve struggled so hard to get out of. I think people are keen to use medications and don’t necessarily wish to be influenced in their decisions, and that’s quite understandable. However… toxic behaviour and the potent way in which people can make you feel unseen when you make an effort to reach out (I’ve noticed how seldom people give you likes at all these days, even when you try to help them), makes me very reluctant to try to continue sharing complex issues online. It’s a shame. I’m probably nearing the end of my journey on this blog. As for my journey towards better health, it is not over yet as it will take months, but I’m slowly seeing small signs of improvement.
Why have I bothered to write about these things in public when no one seems to care or even understand what I’m on about? I guess I have felt duty bound somehow. I am also hungry for justice and want the aspects of public health care that have been harmful to me, exposed in some way or another, even if they remain hidden in a dark corner of the internet. What I would really like at this stage is to disappear into a great big forest and forget about society for a while (or even forever). I now have moments of feeling a bit driven, like my old self, and in those moments I think that the only way is up. A year ago, I felt like I was dying, but when things are bad, they usually get even worse. I wasn’t allowed to just die, I had to work my way out of the situation that was killing me. I couldn’t just cut the cord like I have done in the past, I had to unravel a very deep entangled mess. In the meantime, it’s like being buried alive and gasping for air and needing to come back to the surface for a little bit of light and air. But life oscillates and hopefully I’ve reached rock bottom by now.
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| A few days before the wedding, 2010. I was so happy to be married. The companionship was amazing. |
When I met my husband Martin, I was so happy to finally have a real life and get away from the toxicity of internet forums and online dating. And then just five years later, he died, and I’m back to not having a life, with added medical shortcomings. Here’s a time line of the horrors (otherwise known as adulting as a disabled person) that I’ve had to deal with since Martin died twelve years ago. This is why I’m struggling to find anything positive to say about my life in the UK. There are positives, of course there are. But my life overall has been a nightmare and I have been alone for the most part, spending most of my time surviving and problem solving.
2014 - my husband of four years was misdiagnosed with a virus after a kidney stone removal and died from sepsis. The coroner said it was bronchopneumonia but that’s bogus. Martin did, however, have a weak heart, and it gave in under the pressure of the infection so he didn’t last long. A day before he died my mum was diagnosed with pancreatic cancer.
2015 - I had to pack up and sell the house (didn’t get much because of a dodgy mortgage deal), get my sick mum over from Finland, and rent a house for the two of us. I also had to get a loan for an automatic car and learn to drive again. My cat Marius had bowel cancer and had to be put down.
2017 - my mum died. I didn’t have enough to live on and had to try and get some benefits to supplement my Finnish disability pension, it was really hard to get started and I only barely got by on whatever they were willing to give me then.
2018 - I decided to try and be sociable so I went to a comedy festival in town. A comedian decided to shout into the microphone while I was sat right in front of the speakers, and my ears were busted. I was diagnosed with hyperacusis and tinnitus. I had to start wearing ear plugs whenever I went out, but I was still able to socialise. I was able to get diagnosed with hEDS that year, too, and that was obviously a good thing.
2019 - I had a hysterectomy but the knife slipped and my ureter was damaged. I remained undiagnosed in hospital for ten days while my body filled up with urine. I had sepsis several times while I waited for the reinsertion surgery three months later. In the meantime, my cat minder let me down, she said my cats were cared for when they were not. Luckily when I started to come to, I suspected something was not right and contacted a neighbour after about a week. She was able to get to my cats. My elderly female cat was deeply traumatised and started fouling all over the place (not least on my couches) until I had to put her down in 2021. I also had to sue the NHS and finally reached a settlement four years later that included injury to my ears. My hyperacusis and tinnitus had taken a bad hit from all the antibiotics and other interventions. I also had foot surgery later that year which was probably not very wise, but it had to be done.
2019 - my dad died back in Finland but thankfully his carer arranged the practical side of things while I was micro managing everything from over in the UK. I had some inheritance money and it allowed me to buy some things, but it also lead me to deal with a lot of poor customer service and general hassle.
2020 - the year Covid started and Brexit happened, I started on HRT and was misdiagnosed with restless legs syndrome. I stayed home and didn’t catch Covid. In the autumn, I had a really horrible encounter with a locum psychiatrist when I wanted to discuss the possibility of ADHD. I was left deeply traumatised by his abuse and I still haven’t fully recovered.
2021 - I had a private in-home test for sleep apnoea and then another in-home test from Maelor sleep clinic that was supposed to measure leg movements at night. Despite the lack of a sleep graph, the pulmonary consultant decided I had RLS but refused to offer any remedy because I was using zopiclone. I went to see my GP and asked for buprenorphine. I had tested other medications but were very sick on everything. I started to wonder if HRT was causing problems. I went to see a neurologist about RLS but he was too busy misdiagnosing me with FND to care about the RLS. If he’d been any good, he might have realised something was not right about the RLS diagnosis. Instead I’ve been fighting the FND misdiagnosis for years and still they won’t budge.
2022 - my kitchen was flooded because of a poor installation of a new dishwasher from AO. I had to take them to court because ADR was useless. I also had to try and arrange for the replacement of some kitchen cabinets, a kitchen make over and a new floor. AO backed off just before the court date the following summer so I got my money back. I had to wait eight months to even get a quote from the contractors. The same year, I had weird fence related issues with my ever-charming neighbour who always keeps me hypervigilant.
2023 - my dear old cat Robin was falling away and I had to decide to put him down that summer. That was really one of the emotionally harder things to deal with, not least as I didn’t feel I could ever have another cat. My list of reasons was very long. I had another foot surgery, but a small screw moved so I had to go through correction surgery the following year. I decided to try THC for insomnia, and enrolled with a cannabis clinic, but didn’t tolerate it well.
2024 - after the bunionette correction surgery, I had carpal tunnel surgery which left me with a stiff thumb.
2025 - I was starting to feel increasingly poorly from the buprenorphine. I was awake all night and slept all day. I was heavy with depression most of the time and had no desire to continue living. I was crying a lot about the past and the people I’d lost. In the summer, I had a major moth infestation that petrified me like nothing else - my stress levels were through the roof and I had to take tons of medication just to survive. I had to try and go through all my things at night when the opioid stimulation kicked in. At this point, I discovered that ChatGPT could offer some crisis help when I was really upset and just needed some sensible feedback. And then in the autumn I decided to come off buprenorphine, and needed help with that, too (I’d tried before but could not structure the process on my own). That’s when ChatGPT informed me that I didn’t have restless legs syndrome (RLS) at all and had been suffering from the opioid for no reason at all. Not only that, but it was fuelling the nocturnal restlessness. The tapering was insane, the suffering is so bad, you wish they would just put you in a coma during that time.
2026 - the real withdrawal started when I was finally off the opioid and it’s just going on and on… I’ve really tried very hard to keep a tight sleep schedule and get sunlight early in the day through the winter. I’ve been pretty brain dead for the most part and the tinnitus is through the roof, but I’m slowly coming back to life. I’m sick and tired of being home bound and need some change. I just don’t know what.
That’s about it. The main issues, that is. Those are the things this blog is all about.
Sources relating forms of insomnia and low REM sleep to excessive noradrenaline output:
When the Locus Coeruleus Speaks Up in Sleep: Recent Insights, Emerging Perspectives
https://www.mdpi.com/1422-0067/23/9/5028
Noradrenaline (Norepinephrine)
https://www.verywellhealth.com/norepinephrine-what-does-or-doesnt-it-do-for-you-3967568
Hypervigilance
REM sleep loss–induced elevated noradrenaline could predispose an individual to psychosomatic disorders: a review focused on proposal for prediction, prevention, and personalized treatment:
https://pmc.ncbi.nlm.nih.gov/articles/PMC7680499/
Disciplined sleep for healthy living: Role of noradrenaline:
Mehta R, Singh A, Mallick BN. Disciplined sleep for healthy living: Role of noradrenaline. World J Neurol 2017; 7(1): 6-23 [DOI: 10.5316/wjn.v7.i1.6]
Physiology, stress reaction
https://www.ncbi.nlm.nih.gov/books/NBK541120/
Important note about depression:
[…] Depression: REMS loss is a characteristic symptom of depression; alterations in REMS have been observed in patients with depressive episodes[260]. An increase in total duration and density of REMS and decreased REMS latency have been observed in patients with major depressive disorder[261,262]. Depression is primarily associated with dysregulation of the LC NA-ergic system[263,264]. Also, disruptions in serotonin, NA and DA neurotransmissions are generally observed during major depression. In general, the monoaminergic hypo-function has been traditionally accepted as the cause of depression[265,266]. Anti-depressants inhibit re-uptake of the monoamine neurotransmitters, inhibits monoamine oxidase (which degrades NA), or antagonize the inhibitory presynaptic NA-ergic auto-receptors[23]. These are likely to enhance availability of NA at the synapse resulting in facilitation of NA-mediated neurotransmission and amelioration of the symptoms of depression. [bold font by me]
Mehta R, Singh A, Mallick BN. Disciplined sleep for healthy living: Role of noradrenaline. World J Neurol 2017; 7(1): 6-23 [DOI: 10.5316/wjn.v7.i1.6]