Rhino Introduction

[Rhino]

Hi all, I am a new member and have been struggling with HPPD for several years. However, my understanding of the condition was very limited until more recently.

 

Back when I first suffered in 2014, I always though HPPD was purely visual hallucinations and just felt like that only accounted for 20% of my problems and mistakenly thought that it didn’t tick all the boxes. I also remember back then that internet resources were very limited too.

 

I’m from the UK and at age 11 I went to a government funded ballet boarding school that was a bit like Hogwarts for ballet. I did about 4-6 hours of dance a day, 6 days per week for the next 8 years. I started using weed daily from age 16 and recreationally used harder drugs.

 

When I was 19, I got a job dancing for a Polish ballet company. Me and my friend couldn’t get hold of any weed over there. But because they had fucked up drug laws, you could legally buy spice from a dodgy corner shop. Unfortunately, this became the next best thing that we smoked for the next 2-3 months, and I believe had a big role to play in the following.

 

The last drug on the bucket list to try was…………….drumroll…………….LSD. Me and my friend had a great trip, the next day he was fine, and low and behold I wasn’t. The visual hallucinations and DPDR increased in potency in the days following. But me wanting to salvage my ballet career and not have everyone know we had done LSD meant that I attempted for the next week to try and dance my way through this. We had the opening night of Nutcracker in a couple of weeks and at that point a healthy me would dance for 6-8 hours a day no problem. Over the following days things deteriorated into having intense anxiety, insomnia, muscle cramps and paraesthesia (burning and tingling sensations in my legs). Me attempting to battle on through in this way led to intense brain fog, a panic attack and elements of mania/psychosis. I could barely dance for 1hr before I gave up and the muscle cramps and lack of energy was unreal. I made a real tit of myself by struggling in such an unusual way with the 30 other dancers in the company gawping at my odd presentation. My one and only British friend also thought that I was somehow faking it as an excuse to go home. But I felt like I had no other choice than to quit and return to the UK.

 

This bout of HPPD lasted for a total of 5 months. At the time I naively thought to myself, if HPPD is just visual hallucinations, then what explanation is there for the lack of energy and burning sensations in my legs. I also had a strong sensitivity to anything psychoactive. Things eventually settled, I would sleep for 12-13 hours consistently, but when things subsided, I had returned to normal vitality, as if it never happened.

 

I was abstinent for a while but was also sad that I had cocked up a career I had dedicated so much to and truly enjoyed. I thought, “I must only be allergic to LSD” and that if I avoided that then all would be fine. I started smoking weed frequently again and was doing harder drugs recreationally over the next 3 years. I also started to become a teacher and had passed teacher training and had just started my first induction year.

 

I then went on holiday to Amsterdam for New Year’s in 2018, I smoked a copious amount of weed over the next 4 days. We then attended a club for New Year’s Eve. I did MDMA, a lot of coke and 2x NO2 balloons. By about 4 in the morning I knew that something wasn’t right. I returned home and felt very unwell for the next 2 days and knew that something was amiss in a more profound way. I attempted to carry on as normal and just hoped that it was a mega comedown with some minor visuals. I went and played tennis for about 1hr and knew that I had significantly reduced energy levels. Things really started to deteriorate majorly following this tennis match and I went to A&E to get my heart checked.

 

I developed the most intense anxiety known to man, DPDR, insomnia and visual hallucinations. These weren’t as visually intense as previous, but everything was overexposed, colourful visual snow and a slow rippling waterlike distortion in my visual field. At its peak I would stay awake for 2 days on the trot unable to sleep. Sometimes when I would try and close my eyes and my anxiety would automatically increase like a DJ turning a dial, making getting to sleep impossible. I had lots of closed eye visuals and hypnagogic dreams. The paraesthesia (burning sensations in my arms and legs were also immense) and it felt as if my whole central nervous system was unlocked in a new way Eg when I do a deep exhale I feel a tingling wave down the inside of my forearm. The paraesthesia can also come and go relatively quickly and changes when I meditate/ try to get to sleep. I would try and meditate and stretch my calves and use various methods such as eye masks and scolding hot baths to get to sleep. I experienced pains around my head in patches that would be there for a couple of seconds before moving to a different patch. Any small amounts of exercise, even walking from one side of the house to the other for 2 minutes would negatively impact the visual hallucinations and make me very fatigued, groggy and disorientated. I would also have what would feel like blood sugar drops even though clinically, my blood sugar levels were fine. I also developed a strong sensitivity to anything psychoactive.

 

During this second bout of HPPD I started to have what I believe are 2 different types of seizures during my sleep. I have attached diagrams below to try and illustrate what these are like as best I can. I appreciate from reading about HPPD that this makes me somewhat of an anomaly to have relatively regular seizures. For a long time, I described these sensations ‘as being electrocuted in my sleep’, mostly so I didn’t get banned from driving.

 

In the beginning these happened very periodically, and I would feel distinctly different before and after them too. A pattern of symptoms also emerged in the lead up to and after each one. But with each round of seizures that I had, my overall condition showed gradual improvement, and each set felt like I had opened a new chapter. With each one came what felt like strong serotonergic changes, in the beginning after a “type A” I would cry intensely for about 4-5 hours as if someone had murdered my whole family and feel intense burning in my limps. I would also get a constriction and melting feeling around my forehead, like what I experienced during a comedown from MDMA. In the lead up to the next round of seizures the paraesthesia would gradually increase, and my overall symptoms would worsen. Sometimes exercise would also trigger these to happen sooner than expected.

 

The first 2 months of this bout of HPPD were the worst, and more debilitating than the previous bout. And low and behold it was happening again at a crucial time in my new career, right in the middle of an induction year. I was on a temporary contract and knew that being off for a prolonged period wouldn’t go well. I also couldn’t be completely honest about what had gone on because teachers can get barred from teaching for drug use.

 

After 4 months off, I did a phased return. The overall workload and dealing with the HPPD was a challenge as I’m sure most of you know. I learnt that I wasn’t going to be kept on at that school I was at due to my prolonged absence. I knew I needed to find another job and brush over the fact I had been off for 4 months. Luckily, I did, but in the process I had worked myself into the ground and pushed my mind to breaking point. I had a transition day that I got very determined to make exceptionally good in the hope of impressing my new school. I was trying to work consecutive 8-hour days with minimal sleep. I became a combination of very high and manic and having intense periods of upset. The symbiotic relationship also heightened the HPPD. For whatever reason I also hadn’t had any seizures in my sleep for a good 3 weeks, which at the time was very long and it didn’t help to reset things. I decided I wasn’t well enough to work at that new school and needed time off to recover.

 

At home and upset with no future prospect of a teaching job. I decided to download the headspace app and meditate. I meditated to a very deep point until my arms and legs were very numb and locked in feeling. Then a bit like the analogies of dying that we hear about, I saw an intense light with my eyes closed and it felt like my brain was travelling through some kind of portal. This is when I started having a psychotic episode and I burst into a very colourful array of visualisations. It felt like I had consumed 3gs of MDMA and I was as mad as a box of frogs. My parents were on holiday at the time and in total I had 3 days at home alone and unmedicated. My Dad returned and I was admitted to a mental health secure unit. Although I tried telling the psychologist about the past 7 months of HPPD torture, I wasn’t my most coherent at the time and it probably got lost in a load of mumbo jumbo.

 

My first night as an inpatient I was given zopiclone for sleep which gave me the worst reaction known to man. I had strong visual hallucinations and woke up with audible voices and sounds playing in my head as a direct result. None of which I had had the 3 days prior. Without writing a full novel, over the next 2 weeks I had a paradoxical reaction to benzodiazepine. Risperidone gave me panic reactions, anxiety and increased hallucinations. I also had haloperidol and something else.

 

After 2.5 weeks I was discharged, it was also agreed for me to come off the medication, which I did not respond well to. Although the psychotic episode was like nothing else and very intense, one plus side to it was that it did help to alleviate a good chunk of the HPPD, not entirely, but walking around and performing medial tasks no longer felt like a heptathlon. Because being medicated then was such a horrendous experience, coupled with my sensitivity for anything, I haven’t been medicated since.

 

From the onset of this HPPD I was off work for 1 + ¼ of a year until I started at a new job. Over the last 5 1/2  years I have been in continual employment teaching naughty children. Although on the whole it has been a struggle, some things, such as my tolerance for exercise has improved over these 5 years. At the beginning I would struggle to wash a car for example. Whereas over time I was able to play sports for say 1hr and not feel horrendous for it. It has been a very long slow grind, but one that was on an upward trajectory and the visual symptoms and everything that comes with it were lessening.

 

The frequency of the seizures in my sleep had also reduced to roughly the following

 

(2019= 18– 25 days)   (2020= 25–35 days ) (2021= 40–50 days) (2022= 50-70 days)  (2023= 70 – 90 days)  (2024= 90 – 120 days)

 

If you would have asked when it would be gone by, I probably would have estimated by 2030 it would have a very minimal impact on the day to day.

 

I had always been very sensitive to substances, for example the smell of wood filler, or second-hand smoke or even alcohol hand gels would set me off. But 9/10 times, by the next morning I would have recovered from it. And although other things might take 2-3 days to recover from, it never felt like they impacted the overall trajectory of improvement. Although the HPPD symptoms would come to the forefront, it wasn’t triggering a new episode of HPPD as such.

 

This changed however in September time of this year, and the following sounds ridiculous, I know.  I was cooking stir fry. We had a compressed bag of stir fry but the leaves looked slightly off. I cut the corner off it and inhaled to see if the leaves smelt gone off. As soon as I inhaled, lots of HPPD symptoms came instantly rushing back and in quite a strong way. Only afterwards did I realise that those bags are filled with pure nitrogen. I had a seizure that night, which was out of its typical rhythm and premature. The next 2 weeks I felt strong disorientation, DPDR and feeling very tired from small amounts of exercise. I was hoping that the symptoms were dying down and it was just a bit of an extended blip and decided to try and play tennis. I felt very unwell playing, with many similarities to the past with exercise. I felt very spaced out and that night again had another seizure, only 2 weeks after the previous when at this point they normally happen once every 3 months ish. I was off from work for 4 days and returned but feeling like things had regressed by about 3 years instantly.

 

Then another 3-4 weeks passed. I had a Type A seizure in my sleep and then a couple of days afterwards a Type B. On the day after the Type B I was feeling very groggy and was walking outside to collect my daughters bike from the garden. I walked past our boiler flume and accidentally inhaled some of the fumes from that which again instantly set off more HPPD symptoms. That night I had about 3 hours sleep, immense parathesia in my legs, it felt like my brain was splitting apart and melting. The following 4 days I then spent crying immensely for extended periods of the day. I have been signed off from work since this (about 4 weeks ago).

 

Since both of those events it just feels like my tolerance for substances is at like a ridiculously low level. Or like things in the past that would bring back visuals for say an hour or 2 are making me have minimal sleep, lots of paresthesia and I then spend the next day or 2 crying. So much of it just feels beyond my control and it just feels like I am in a downward spiral of my HPPD getting triggered by less and less things and my overall tolerance being reduced to near nothing. I was walking my daughter back from school and unintentionally inhaled an extremely small amount of 2^nd hand weed from a neighbour. I then spent the next 2 hours with lots of burning sensations in all my arms and legs, very anxious and cranky. Whereas that same amount of weed inhaled before the stir fry incident wouldn’t have affected me that much at all. I have also been having progressively worse visual hallucinations, or like full geometric patterns and just lots of symptoms that I haven’t had for years. Even sounds have sounded too loud and overwhelming. It was my 30^th a couple of days ago and I binged on a load of Ferrero Rocher and my paraesthesia in my arms and legs was really bad and I have never even noticed any differences with sugar consumption before.

 

It’s just like the past 5 years of gradual recovery and building resilience has been wiped out by a handful of random obscure triggers that are hard to avoid and not even that toxic in the grand scheme of things. I think everyone on this forum knows that abstinence is the only way to ensure you don’t trigger HPPD. But I have been completely abstinent from everything for coming up to 7 years. Emotionally I have been having a lot of suicidal thoughts during these recent periods of intense sadness. But I have a beautiful 3-year-old daughter and fiancée and support network.

 

Because of these sensations of what I believe to be seizures in my sleep, for a long time I always thought that there was a neurological/ epileptic component to me being unwell. But on the same hand I was reluctant to say I have had a seizure because of the implications for driving etc. I spoke to a neurologist in February of this year and without me mentioning HPPD, he produced a report stating that my symptoms were in align with HPPD. He ordered a nerve conduction study and full brain and spinal MRI. Because I had mentioned Nitrous oxide use, he wanted to rule out neurological conditions caused by abuse of NOS which affects B12 function and can lead to spinal cord damage.

My vitamin B12 was fine along with the MRI’s and nerve conduction studies. I tried to say to him that the sensations in my sleep felt epileptic, but he was very dismissive of that even being a possibility and didn’t entertain that as an option, even when I had tried to show him the diagrams I made below.

 

My personal belief is that because I consumed No2 on the night the HPPD was triggered, that this was the cause of what I believe to be seizures. But that is just my own uneducated speculation.

 

Occasionally when things are bad, I also have a type of kind of weird electrical activity voluntary seizure during the day, this does not come on suddenly like a grand mal and strike me down on the floor.  I am conscious during it and it happens when I lay down and close my eyes. My eyes flutter rapidly and my arms and legs jerk, it then alternates between this and scrunching up my face and back muscles. These can sometimes last for a period of 7+ minutes. I can’t do it on demand and once it has run its course it is done. I had these a lot during and after the psychotic episode, I had them after a head injury in Feb of this year and then again very frequently over the past few weeks. If anybody is dying to see it, I do have a video of a couple of them I could share.

 

I have been engaging with mental health support from the same secure unit that I did previously. The psychiatrist there was very helpful a couple of days ago. I also mentioned Dominic Ffytche in the hope of being referred to him. We discussed having a qEEG and the potential of rTMS, but anything like that is a long way off in the distance. If I was a millionaire, I would also like to have an fMRI, but don’t we all want all of the tests hey. I believe that I am going to be referred to somewhere now. I have been tempted to try the likes of lamotrigine, but because of the large unknowns around what these seizures even are, I feel like it’s important to have that properly investigated before I do any trial and error.

 

I only discovered this forum a couple of days ago, and some of the similarities I have with other posts have brought some sense of reassurance. It has been a very long near 7 years of me being symptomatic and mulling over all of this with me myself and I. Even if there is no remedy in sight. If you made it to the end of this post, thanks and any comments are much welcomed.

[Jay1]

Welcome to the forum, thanks for sharing your story.

[Spartan]

Hello thankyou for your introduction. Welcome to the hppd forum !