Can anyone relate? Offer solutions? Answers?

Posted , 3 users are following.

I'm 25 years old and was told from a young age that I had Gilbert's syndrome. Honestly, I forgot all about this until a couple years ago.

At school I found it incredibly hard to concentrate (literally impossible) to focus on work and went from being top of the class at 11 years old to dropping out at 16 with poor grades. I blamed myself for this and assumed I was just lazy and unmotivated. This has carried onto adulthood, and I have tried to start University studies, and I still take so much longer to complete any work. I frequently have to read things over and over and over to actually register what is on the page.

I was always a shy younger kid, so I always ignored the social anxiety that I have had since I was a teenager. This was until I became more aware of mental health and realised I had social anxiety. I always felt as though people were looking/watching what I was doing, judging. I have always felt as though I have more thoughts pinging through my brain than most people. This carried on into adulthood, where I struggled developing relationships in the work place and really struggled to find who I was. In terms of night-life, I wouldn't be able to enjoy myself on a night out, unless I was reaallyy drunk - making a fool of self drunk. I would feel like everyone was watching. This led to quite a key period in my life - drugs.

I always had an addictive personality. Not sure if coincidentally but it always seems to be something which is an escape from the reality. It started off with games, I could sit for hours and play a video game, indulged into a much more simple virtual reality. Then, on a random night out (about 18 years old), found myself with an ecstasy pill in my hand. It was amazing. A whole night without any anxiety... it was a real eye opener to how much my anxiety had effected me. It was absolutely incredible. My friends would be reacting to the drugs how I would adjudge 'normal' people to react to them, dancing, moving all over the place, going 'weird'. But I could ACTUALLY talk to people, strangers, and not have any thought about being judged. This started a cycle, I would slog out the week feeling crap (I barely remember a few years), just to go out at the weekend and feel normal. At first it was ecstasy pills, every weekend. Started as one per night, then two, then three. There were a few nights where we got carried away, such as my birthday which I had 7. After a couple of years we got introduced to new drugs, cocaine and ketamine. The reason for 'the switch' was because people warned us 'Pills mess you up'. (And the others don't??). But cocaine was good for the night out. My friends preferred it as they didn't 'go weird' on cocaine. It still made me super sociable and alleviate all my anxieties so I was happy. Then ketamine, after the night out we would take this when back at mine. The appeal of ketamine? I think it was the escape. I'd have ketamine down as a hallucinogenic. You're in control of your body but your perceptions are all wrong. It was funny. Anyway, that was my drug history which lasted about 4 years. The day after everyone would obviously feel pretty rough. So any 'hangover' symptoms I would always pin down to drugs. I would have puffy eyes all the time, my friends didn't, I never understood why. My skin and eyes very yellow the next day also.

After these 4 years(ish) so about 22/23, I packed in the drugs. I didn’t feel AS anxious in situations, and no longer found the appeal in going to clubs. I also started a career, which would definitely suffer if I were to continue. I still wished to go out to the pub with friends, and hey, surely if I do not take drugs I will not have what I always imagined was the physical symptoms of a ‘comedown’ the next day. Wrong. And every single time I have a drink, even just one or two, I will wake up the next day feeling disgusting. Everything I used to assume was after effects of drugs. Sore eyes. Extreme nausea and fatigue. An awful pain in my joints, especially my hands and fingers. Please note that before I took drugs, my hangovers were never like this.

Throughout that time frame I had moved out, had a relationship (hid the whole drugs thing from her, somehow), and was then living on my own. At 23 I met a new girlfriend. This was when I remembered how irritable I have become. Every single thing wound me up. I used to think I had something called ‘misophonia’ - disliking noise. But it can be something as little as movement. If I hear nail biting or noisy eating etc… my mood just changes. I get flustered and very very angry, a lot of hate builds up in my head for whatever and whoever is making that noise.

I feel fatigued a lot. Whether I sleep more or not, it doesn’t seem to help. I am sure many people say this, but I feel as thought I am a lot more tired than everyone else around me.

So I have been diagnosed/suggested to have misophonia, anxiety, and now ADHD(waiting list), for a mixture of the things above. I was prescribed anxiety meds but didn’t stay on them for long enough for positive effect. They made me feel crap and I always had mixed feelings on medication to control mental state. The Dr. suggested I have ADHD, because of the rapid thoughts, irritability, inability to focus and also the feeling of needing to escape. I am on a waiting list for diagnosis.

However, after doing more and more research/looking into posts online, I realise that many of my ‘symptoms’ are linked, some loosely, to Gilbert’s Syndrome. I now wonder whether some of these are a cause of GS, or maybe all of them? Have I damaged my liver from drug and alcohol use? (I read this can happen).

I am now a father to our 6 month old girl. I do not want her to have a father who comes home from work absolutely knackered. I want to be able to enjoy a drink with friends and family. I want to be able to socialise in new groups without feeling anxious. I want to be able to focus on my work and my university degree.

I am going to book a doctors appointment soon regarding the liver damage concern. But I am sceptical of doctors, they always seem to disregard things. Hence my post here. If anyone relates to anything, or even has any answers, or solutions to help. Please get in touch and let me know. I am willing to try to help others.

Many, many thanks,


0 likes, 2 replies

2 Replies

  • Posted

    It was a fatal mistake to ignore your genetic disorder. Any drug lowers Copper levels pretty fast, because Copper is needed to detoxify drugs. Just do blood tests on all vitamins and metals (everything will be low because of drugs) and correct deficiencies. ADHD will be gone after Copper supplementation and magnesium

  • Posted

    I've had similar symptoms: generalized anxiety, intolerance of alcohol and most conventional and recreational drugs (probably due to not metabolizing them correctly or fast enough), easily fatigued, digestive problems, etc.

    I just thought this was normal (although not compared to most other people) until I realized decades ago that Gilbert's Syndrome was a thing. Since then I realize that this is just the genetic roll of the dice we got, so it makes it easier to accept these quirks. I.e., it's not a mental issue -- it's a physical (more specifically a genetic) issue.

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