My Story

[Wight1210]

I was diagnosed with ADHD when I was 8 years old. ADHD then was just starting to be recognised in the UK and there were very few treatments to offer. One of them was Ritalin which I was put on until I was sixteen.

When I was sixteen, I was told by medical professionals that ADHD in adults doesn't exist and that my treatment would stop. Unfortunately, a year later I left home and moved to London and got on with my life as an adult.

I self-medicated for years with alcohol until 2011 when I had a complete breakdown and was admitted to a psychiatric hospital. At that point nothing was really done, they just said it was exhaustion and sent me home.

Then in 2012 I went away with my husband and worked on a Cruise Ship and basically without anybody realising over the time of the contract I started behaving manically plus I was still drinking heavily. I did silly things, and it nearly ended my marriage.

Once back on dry land I moved home and started a business but of course, was still manic and now secretly drinking to control all the symptoms which I didn't even know I was having.

I started up a business because of course when you are in a manic state you think you can take over the world and for the first year the business was going really well. I remember my brother showing me a breakdown of the end-of-year financials and I remember feeling proud but remember all this was going on as I continued to become more manic and was drinking even more heavily because it was the only way to control all the symptoms.

Then it happened, in August 2014, I lost it, complete breakdown, meltdown whatever you want to call it. The mania that had been building for 3 years just came to a peak and I crashed, I was admitted again. This time for a month. I went in with a broken hand, a drinking problem had lost my Husband and everything else.

But there were positive things happening in that hospital admittance. They started talking about Bipolar Disorder and within the first week of being in there, they got the top specialist in ADHD in my area to come and see me. After a very long talk with him and him having a very long talk with my Mum, he diagnosed me that day with Adult ADHD. Unfortunately, because I have a heart condition, I was told that I couldn't be put on any medication for it. I was then diagnosed with Bipolar Disorder and left the hospital.

It was time to start re-building which was really difficult. I had my diagnosis of Adult ADHD, but no treatment and I wasn't told about all the tools that are out there to help with ADHD symptoms. I was put on medication for my Bipolar, an anti-depressant, mood stabiliser and anti-psychotic. The good news at the time was that the anti-psychotic was a strong sedative which helped suppress the ADHD symptoms but one big problem about it was that it caused weight gain.

Moving forward a few years and we come to around 2018, there had been one short hospital stay previously but everything still wasn't ok. I was having more serious spells of depression and self-harming and I had put on a considerable amount of weight. I was under community mental health, and they were tweaking things and then the local NHS in partnership with a local charity started up a new centre and basically stopped all non-urgent treatment for community mental health. I was one of the first patients to this new centre and they were getting on their legs, and I decided I would give them ago, what I didn't realise was that after being discharged from Community Mental Health I didn't have anybody managing my meds and I wasn't having regular appointments to review them. The GP would just write the prescription and that was it.

I started with the new service, and it became apparent that the new service was just an eight-week programme and then at the end you're sent out into the world.

Then the pandemic happened, but I didn't give up and with the help of my mum we started the process to get back on with Community mental Health because I was going down fast, suffering from major bouts of depression, had gone from 12 stone to 20 stone between 2014 and 2020 and was stoned the whole time from the meds, struggling to hold down a job. Luckily, we had a family friend who had a business who was very understanding and allowed me to come and go as and when.

The process to get back into Community mental Health was happening slowly but happening. Eventually, by 2022 I had been referred back to Community Mental Health, was given a key worker that was there all the time and, in September, I saw a Psychiatrist. He straight away upped the mood stabiliser and I then saw him again in December which is when he re-diagnosed me with Schizoaffective Disorder. He started transitioning me off the current antipsychotic and put me on a new antipsychotic. This transition took a month and on January 2nd 2023, the day after my last tablet of the old meds I woke up feeling refreshed, bright, awake and full of energy. I was also awake at 8 am something that hadn’t happened for years, prior to this my usual wake-up time would be between 12 and 3 pm.

As the weeks went on, I carried on feeling better but there was a familiar feeling coming to the service. I could feel this energy building, I couldn’t control my urges, I was having symptoms that I hadn’t had since I was a child and also felt very similar to how I felt back in 2012. The positive thing about this is that I was recognising it myself, something I had never been able to do.

A few more weeks went on and my family started noticing and that pretty much brings us up to now. I’m now hypo-manic and although a doctor hasn’t said it, I feel that my ADHD symptoms have really come to the surface, and I feel out of control.

My thoughts are that I suppressed the ADHD symptoms for many years self-medicating with alcohol then I went onto an anti-psychotic which was a strong sedative and helped to suppress the ADHD symptoms then in January I came off it and although the new medication is very good it doesn’t have the same side effects. There is no weight gain, no feeling stoned and no feeling hungry all the time. However, it’s not quite hitting all the spots and unfortunately only time will sort that out because it’s going to take time to tweak the medication and get it right. Plus, what’s really exciting now is that there is non-stimulating ADHD medication which doesn’t affect your heart, but the Psychiatrist has said that we need to get the mental health medication right first.

I am being proactive though, I feel I need to have that support that I had from my key worker so I have asked the Community Mental Health if I can be re-instated with one and they have agreed and I have realised that with the help of a few frank conversations with family and I have now come to the conclusion that only I can do something about it, the drugs will help but that’s going to take time, so I have started researching ways of living with my conditions.

The first thing I learned is that when you are writing something long and you have concentration problems put music on as it helps focus apparently. Well, I can say it works. I have just sat here for the last 1.5 hours and wrote nearly 1400 words. Alright I’m probably hyper focusing but that’s a superpower as far as I’m concerned. Writing this has been really calming and cathartic, I’ve enjoyed it. Well now we get to what brings me here. To see what other people do, get tips and maybe chat to people that are at the end of their tether like me or have been in the past.

[Wasted71years]

Hi Wight1210

Anyone here who is old enough has lived through the various waves of ignorance about ADHD - adults grow out of it, you aren't hyperactive so you don't have it, etc. Sorry that you suffered and missed out on many years of support and treatment because of this shared heritage.

As I understand it as a layman, having both ADHD and Bipolar is a particular challenge because the stimulants that are so effective for many with ADHD can trigger mania. As much as heart issues may be a counterindication, so too is the Bipolar Disorder I would think. It is also tricky because ADHD symptoms can be caused by other disorders too, which makes life even more complicated.

The medical folks have to sort out which is primary, what is the root cause, so they don't treat the wrong thing. Many of our fellow ADHDers have had treatment attempted for conditions like anxiety when the actual issue, ADHD, was the root cause. Once ADHD was treated the anxiety melted away. I don't have this comorbidity personally but know many who do. The same is true when some other condition causes the ADHD symptoms and they go away when the root cause is treated.

Fortunately as more is learned about ADHD new treatments and new medications come out. Hopefully your care team will be able to stick with you and help make life better and less chaotic for you. In time they may dial in the right mix of medications, counseling and other treatments to really benefit you. Best wishes for that to come soon.

[Knitting20projects]

My only thought is: do you have access to an addiction psychiatrist for evaluation? Only asking because you reported a past alcohol use as self medication. Maybe a professional with that additional expertise could offer you support to empower you through future challenges? We all definitely need tools to help us. I know I’m constantly looking for more. I wish you health and support.

[Wight1210 in reply to Knitting20projects]

Thank you for your kind words. I have completed a 8 week addiction course to give me the tools to not revert back to using alcohol as a means of self medication. The service is also available in the future if I need it. Since 2014 I haven't needed alcohol as a support as I have been medicated bit you never know what could happen in the future so I decided I would learn the tools needed to not rely on this negative and addictive way of self medicating.