When things get as bad as they can get, they only get worse

So since 2014 (ten years ago) my husband died unexpectedly due to a misdiagnosis, my mum had cancer and died two and a half years later, my dad died two years after that, my three beautiful cats all died, I’ve had my ears busted by a comedian, I have almost been murdered in hospital due to medical negligence while the ear problems have been made so bad I can barely get out of the house anymore, I’ve had to sue the NHS, I’ve had to take an electric goods vendor to court over a kitchen leak and had to fight to get my kitchen refurbished, a dumb doctor has disregarded my referral for Restless Legs Syndrome and tried to diagnose me with Functional Neurological Disorder (FND), which I don’t have, and that’s basically a modern version of Freudian ‘hysteria’, and finally, a misogynistic quack doctor from South Asia has tried to break me mentally by declaring that I’m a deluded hypochondriac who’s doctor shopping and doesn’t need the health services at all. Other things happened as well, such as Brexit and Covid and other negative experiences with misogyny within health care, and even with an intimidating male neighbour. But no matter! Who doesn’t like a life challenge? What doesn’t kill you, makes you stronger, right?

Well, of course I’m not okay. I’m exhausted. In the meantime, the menopause started. Although the gynaecologist who removed my fibroids wanted to rip everything out, I protested at the last minute and kept my ovaries. I therefore didn’t enter menopause straight away, which was a good thing since I had plenty of suffering to do in the meantime. Strangely enough, I seem to have gained a bit of energy a few years before the onset of the menopause, and this really helped me get through the ordeal of moving houses and caring for my mother. Menopause started in late 2018, just a few months before the surgery, and then things started to deteriorate. A year later, I also had foot surgery to remove bunions and fuse the toes. It was probably not wise to have another general anaesthesia so soon after the catastrophic hysterectomy and reinsertion of my ureter, but I didn’t really have a choice. I was ageing and really had to get it over with. (I also had surgery of the bunionettes as well as the removal of a screw that was sticking out of my foot in 2023, and then correction surgery in early 2024 because the left bunionette did not heal properly). 

In early 2020, just before the lockdowns started, I said to a female GP that I had some night sweats and felt quite depressed in a hollow sort of way, and so I was started on estradiol. To begin with, it did seem to pick me up, and I felt more joyful all of a sudden. I think there was an increase in dopamine because I was quite eager to shop. This wasn’t a bad thing per se because after my dad’s passing, I wanted to renew my life, and got some joy out of the process. But what I didn’t realise, was that the HRT was actually making the insomnia worse. I thought maybe I had sleep apnoea because I was gasping at night and my throat was closing, and I was often very dozy, but a private test revealed that I didn’t have this issue. I’m not sure why but I decided to up the estradiol dose. The female GP didn't offer me any opinion and just went along with the idea that I needed a higher dose. I think I ended up with a 100 mcg patch, the maximum licensed dose. It was far too much for someone who clearly already had spooky hormonal issues in my teens.

At some stage I realised I was suffering from a weird nocturnal startle effect or fright that sometimes turned into a sense of physical terror any time I missed a dose or two. During this time, I was also finally diagnosed with Restless Legs Syndrome (RLS, aka Willis-Ekbom Disease). I didn’t know anything about it at all, although I can now see that I have probably suffered from it since my teens. In fact, my insomnia started when I started on antidepressants that raise the serotonin levels, and it’s pretty clear to me that it actually worsened nocturnal restlessness so that I became severely sleep deprived. The effect of antidepressants on RLS is a well known problem although the majority of doctors aren’t educated in this matter. Instead they all wanted to treat my insomnia with more antidepressants! Unfortunately, I never connected the dots. Neither did my female GP, in fact she was completely clueless and all she said was that she wouldn’t want me to take more benzodiazepines.

I was now offered Ropinirole, a dopamine agonist, but it made me extremely sick. I felt dizzy, had diarrhoea and vomited. I had horrible nightmares. I had to give it up. I also had a bad reaction to gabapentin and clonazepam. The latter gave me indigestion on top of the increasing stomach pains I was also complaining about at this time.

I now know that dopamine agonists are no longer recommended by the RLS experts as they almost always lead to augmentation (a worsening of the symptoms) and may potentially destroy dopamine receptors for good. In that sense I was perhaps ‘lucky’, though the reality is that I’m worryingly sensitive to medications. I started to read up on neurology in an effort to help myself. My reading is extremely slow and arduous but I’m stubborn and know that ‘something’ will be retained even when I don’t think I will remember anything at all. 

I began to understand that I was extremely sensitive to increases in serotonin. Melatonin is synthesised from serotonin and so I could see that the wakefulness I experience at night is likely due to increasing melatonin rather than a lack of it, as orthodox sleep medicine will have it. I suspect this is also the reason my hyperacusis and tinnitus go up at night. In fact I could see that I suffer from serotonin toxicity, also called Serotonin Syndrome. The syndrome is typically caused by the concomitant use of two or more serotonin agonists (this can be supplements as well as drugs). There’s a very long list of medications that can induce serotonin syndrome, and it dawned on me that the many drugs on the list I had tried in the past had all caused me some kind of trouble. These included antidepressants, antihistamines, antifungals, antiemetics, and even Loperamide. Some of these were serotonin antagonists that didn’t give me any obvious symptoms until now when I was in menopause. 

There is also a long list of drugs that aggravate RLS, and there’s some overlap, but in general, it’s thought that people with RLS tolerate serotonin antagonists and certain antidepressants such as trazodone (I don’t). It looked as if in my case, serotonin toxicity was an ice berg and the RLS the bit on top above the water, but that’s all I could see because neurology is so complex and very few people seem to understand these issues at this point in time. In fact, most doctors don’t even understand RLS at all, and this is one of the main reasons I have had bad experiences with health professionals in the past few years. It’s a global disaster since 10% of the population suffer from it and 2% have it so badly, it can give rise to suicidal ideation. Sleep deprivation is torture! Why is this so hard for the medical professionals to understand? CBT obviously won’t help because this is not a psychogenic disease!

All of the issues that menopause brought on took ages to sort out. Following internet advice, I tried iron supplements, but they didn’t help. Another female GP I transferred to was very anxious and refused to offer me opioids to deal with the refractory RLS although I tried to explain the case for her during six lengthy appointments. She then referred me to a misogynistic colleague who blankly refused, as well. He almost spat on the seminal article I had printed off the internet because he thought it was ‘something American’. In the end I went back to my GP of 13 years and said I pay taxes as well, so could I have help, please? Thankfully, he agreed to try a few options, including low dose Buprenorphine, an opioid that is highly recommended for refractory RLS. Unfortunately, I suffered from severe side effects including hyperhydrosis (sweating), depression and extreme daytime fatigue that left me bedridden for weeks at a time. I was also excessively wakeful at night and often didn’t sleep until 6 or 7 am (that is after I’d stuffed myself with tons of sedatives throughout the night in an effort to finally knock myself out). I had a tendency to do online shopping at night so clearly the dopamine levels were too high. I was crying for no reason. I tried to cut down on the dose but it was all very difficult. 

Then finally, I began to connect some dots and realised that the HRT was a potential problem in all this. I tried to come off it, but it was incredibly difficult because I would now suffer from that startle effect every time I was falling asleep. It took me about a year, and once I was off it, it still took me a couple of months to feel more balanced (and more like my old self). Unfortunately, the flip side is a drastic increase in joint problems - not just pain but also tendonitis, clicking and subluxations. Problems with my fingers are especially difficult to live with since I need my hands more than any other part of the body.

What I discovered was that the HRT is not just some innocent supplement and that it had in fact potentiated all the other drugs. To begin with, it acted as a stimulant, and it had also increased serotonin and added to serotonin toxicity. The funny thing about serotonin syndrome is that increases in dopamine can also bring it on. The overstimulation of my nervous system had caused tachycardia, stomach pains, indigestion, nausea, diarrhoea, increased nocturnal urination, feeling hot, restlessness, nightmares, depression and fatigue. When I was finally rid of the HRT, the side effects from the Buprenorphine became more bearable. It still makes me sweat a lot but I’m no longer as depressed and nauseous as I was previously when I could barely get any food down at all. I’ve tried fairly high doses and it only made things worse, so I try and cope on less than 400 mcg per night. Ironically, opioids can contribute to serotonin syndrome, so it makes sense that I cannot not take other serotonin agonists at the same time. I also have to be very careful with supplements and certain foods such as chocolate.

While currently there is no evidence that estradiol hormone can contribute to serotonin syndrome, I do believe it can. It could be that I suffer from a genetic polymorphism that makes it difficult for me to metabolise serotonin (for instance trouble with the CYPA24 gene that metabolises many drugs). Or it could be something else entirely. I’m quite certain I have low dopamine and low endorphins. Through experimentations with various supplements I have discovered that I don’t tolerate glycine and several vitamin B’s. Apparently oxidative stress, which is linked to iron metabolism, is a problem, and I’m unable to tolerate glutathione, which normally enhances the immune system. Yet iron supplements seemed to make things worse. I decided to go back to eating eggs, which has increased the iron naturally. It’s cheap and nutritious and easy to prepare - that’s all I can think right now. I could go on and on… the neurological implications are obviously complex and well nigh impossible to sort out because there aren’t any accessible tests for this sort of thing.

Just a few months before Martin died I discovered TCM (Traditional Chinese Medicine) and Chinese herbalism especially, and had some very good results from a certain formula that’s traditionally used for insomnia. It’s called Tian Wang Bu Xin Dan/Wan, The Heavenly Emperor’s Tea Pills. It allowed me to have up to six hours’ uninterrupted sleep, and I no longer had to pee all the time. I started to teach myself about Chinese herbs and think that I gained a lot from the ones I settled with. My mum was also keen to take them, and I think they helped her, as well. But then she died and I was too burned out to carry on with the practice of preparing decoctions. This was probably a mistake because my health and stamina just started to fall apart for real. When I tried to go back on the herbs, I found that I no longer tolerated them. I don’t know what happened to my metabolism, but one thing seems certain, and it’s that I don’t tolerate oestrogen very well. I can only hope this will work out in my favour as I age… but alas, things don’t seem to be that simple.

It’s interesting that I started to have really severe stomach pains when I stuck the estradiol patch on my belly. I now believe that all the stomach problems I’ve had since then have been potentiated by the HRT. I also noted that when I tried to use yams as a natural substitue for oestrogen, it caused stomach pain. At the time I thought it was just hard to digest, but in hindsight, I believe it was the hormone that caused it. I have had fewer problems with stomach pain and indigestion since quitting HRT. The nightly frights still appeared when I was on a tiny, tiny dose of estradiol gel, but in the end they disappeared. Having said that, I have something a little bit similar in the form of a mild startle effect sometimes when I take something that - evidently - increases serotonin. It’s not quite the same but there is a striking similarity in the way it wakes me up with a sense of nasty foreboding just as I’m on the verge of falling asleep. Even paracetamol can do this. I wish to underline that this is absolutely not normal. Please consider that HRT may not necessarily go well with other medications! I am not a doctor but this is my word of warning as a suffering patient.

I now use the herb Ashwagandha 1 tsp twice a day. I have suffered from a very painful wrist, and have tested this herb three times. Every time I came off it, the ulnar pain came back. It’s clear to me that this is a powerful supplement to help with the osteoarthritis in the joints. It doesn’t seem to corrupt my sleep. I also take l-theanine, a chemical extracted from green tea that helps balance glutamate. No wonder I always enjoyed strong green tea to start the day with! But tea also contains caffeine, which l-theanine doesn’t. The first time I used l-theanine, I felt clearer in the head than ever before, and had this pleasant cold sensation running through my painful legs. Unfortunately, the effect quickly waned as I habituated to the supplement, but I still use it twice a day. I also discovered that I was probably a bit low in histamine (this can occur in old age) and found that another amino acid and precursor to histamine, l-histidine, picked me up a bit. I don’t have allergies like so many other people with hEDS and anti-histamines increase RLS.

In desperation, I also tried medical cannabis. I was thankfully dealt a pleasant doctor from the Scottish borders who didn’t really understand my problems but humbly acknowledged my health concerns and difficulties and agreed to trying THC. The idea was to titrate up to 0.9 ml per night. I didn’t tolerate this at all. I had horrible stomach pains and indigestion. I felt apathetic in the day time - couch potato syndrome, I call it. I gave it up, but went back to it some time later, using only a small dose on certain occasions when I really needed to get good sleep. When I ran out of oil, I asked my doctor if I could use it occasionally rather than every day, and he agreed. 

Once I quit the HRT, the side-effects from the oil also lessened. I have now been using very small amounts, between 0.1-0.3 ml, at night on occasional nights, and I do get very good sleep, but the tinnitus goes up and I get some indigestion. I can only use Rennie for this as all other antacids increase RLS. Many contain aspartame which is a killer for me. I also feel stiffer, achier and more sluggish than usual. I don’t use CBD oil as it stimulates me. I believe the THC oil may silence the fight and flight mechanism in the brain, in other words, the catecholemines that are wreaking havoc with my sleep. When I wake up throughout the night, I’m usually able to go back to sleep without having to add more drugs. 

I now have a FitBit Inspire 3 which records my sleep, and it’s fascinating to observe it. With the drugs I have now, I can see that I usually get good deep sleep but poor REM (dream) sleep. The sleep architecture itself is in shambles. It’s almost as if I was allergic to sleep. I doubt that I will ever have drugless sleep again. I worry what the future has in store for someone who is already this sensitive to drugs. This is only likely to get worse.

I don’t know where I’m going from here. I struggle to get to sleep and I need a lot of sleep in order to get through the day. On days when I’ve used the THC oil, I cope on fewer hours of sleep, but I feel very sluggish in the day time. All this means I’m still unable to get up before noon at the very earliest. I obviously really hate this because it takes me hours to get up and ready to go out, and by that time, businesses are already closing. The issue is particularly difficult when I have to get an appointment. I can no longer push myself to drive any longer distances, but patient transport is a very difficult alternative. Then of course I have the hyperacusis and reactive tinnitus to boot… My life is a nightmare.