Roy at Grimselpass, Switzerland

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Roy - That Scouse Bastard

I am Roy, some people might call me "that Scouse bastard"
What is a Scouser?

Roy - That Scouse Bastard

This is my cyclothymia case file
It is intended to be of help to anyone diagnosed
as cyclothymic and for their family and friends.

To the many who have mailed to thank me - You are welcome, and thank you back.

Firstly, I am not a doctor or an authority on Cyclothymia and everything I say here must be viewed taking that into account, I just hope I may be of some help to someone. The links I have included here are well-respected sources of information so they are a good starting point.

In my opinion everyone with Cyclothymia or Bi-Polar Disorder needs to read this website:

If you came here from the page "a little bit about me" if this link is gray you did then you have probably read the next paragraph, if not read on.

I am cyclothymic, which means I have a "condition" similar to but not as severe as Bi-polar Disorder (Manic-depression), that affects my moods. I am not a "danger to the general public", in fact, if anything I am less dangerous THAN the general public! I mildly disapprove of the words "suffer from" or "mental health Problem". How the mind works is still mostly a mystery to modern science, and unsurprisingly, even that big fat book my daughter bought me called "how the mind works - by Steven Pinker" does little to explain things. It is my belief that my brain chemicals are different that's all, just like people who are epileptic have a chemical imbalance. You wouldn't think there was anything "abnormal" about me if you met me. Without purposefully trying to be contradictory, I also freely acknowledge that sometimes I may well be "not normal". I sometimes get easily confused or anxious for no particular reason, or am unable to make even simple decisions without things going round and round in my head. I often need to just be on my own, some days I literally just stare at the wall, feeling quiet and pensive but not necessarily depressed. Sometimes I have no motivation, can't get out of bed don't eat properly and have erratic sleep patterns; Other times I'm a fireball of enthusiasm and inspiration, full of ideas and can achieve any goal I set myself (and I have achieved quite a lot despite my predicament). These conflicting mood states cause my friends and family to despair at how I'm not doing really well with a good career etc, but this is just the way I am and I have accepted that. From day to day I'm someone who most find polite, chatty, understanding, honest, compassionate, mildly interesting, etc, etc, long list of words that don't include Lunatic, Murderer, Nutter, Psycho, Wierdo, etc,. etc,. I know I'm a decent man, I like who I am, and so does everyone who knows me.

History and Diagnosis
In 2000, after years of ups and downs, ruined relationships and wrecked careers I had what might be called "an episode" or maybe a "nervous breakdown" and I was diagnosed with Cyclothymia. I then went through a manic phase with wild ideas, getting things on credit that I couldn't afford and deciding I needed to completely change my life. I sold everything I owned, bought and renovated a 1960's motorhome, said goodbye to Liverpool then drove through France; over the pyrannean mountains (at 8 m.p.h) to Lloret de mar in north Spain where a few weeks later when I'd almost ran out of noodles, yorkshire tea and money, I got a job at a pub/club called Moby's, doing "propoganda" which was basically chatting people up and getting them to go in, (it was free entry and they got 2 for 1 drinks vouchers off me so no-one got ripped off). I enjoyed my time there, but alas.. as is always the case my mental state changed it's phase, deteriorated, and I found myself becoming increasingly anxious and could not concentrate.. I lost the job and returned to the UK and spent a very cold winter and another 10 months living in the van called "Dreamchaser" until I finally got a roof over my head.

Lamotrigine (aka Lamictal)

25/10/2009 - After what I read on and the reviews I read here - I started taking Lamotrigine (aka Lamictal) last week. Too early to say if it's gonna help but I'll update when I know.

30/10/2009 - Am taking Lamotrigine (Lamictal) 25mg daily (bd 12.5). So far I have had some problems, but it's early days, and it's not all bad.

Bad Points so far - Within a few days of taking this drug I was having "flashes" of suicidal ideation. I have also had a sore/swollen throat, insomnia, itching, stuffy nose, headaches, diarrhoea, pricky skin, agitation, anxiety, rage, rapid cycling moods, shivering, forgetting what I was about to say, vivid nightmares, nervousness, impaired decision making, dizzy spells, and some muscle spasms. Now I realise that all those things sound bad, but they are not as bad as they might at first appear, since they are not severe and not all happening at once. Meeting my girlfriend for coffee in town today was a bit stressy with all the people about, but that is probably because I was taking more in than usual and am not used to that yet.

Good Points so far - I'm sleeping less, feel a bit more motivated (I'm updating this page and answering more of the e-mail's I recieve here) and less tired throughout the day. Best of all is that I'm also feeling less fuzzy headed, and at times I feel I'm thinking a little faster and more clearly than I normally am. I am sure a lot of you know what I mean by that.

My new psychiatrist put me on a 50mg per day starting dose. Everything I have read about this drug says that it is best to go really slow upping the doses in order to avoid the rash that if you get, will probably result in having to stop the medication, and could develop into the potentially life-threatening Stevens-Johnson Syndrome (although this is extremely rare) so I ignored my psychiatrist, split my tablets and started on 12.5mg twice a day (the manufacturer's recommended dose). After a week, and with the side-effects lessening, I thought I would increase my dose to 50mg per day, so before bed I had my first 25mg tablet; that was a mistake, all the bad side-effects got worse and I had a terrible day yesterday. Last night I went back down to 12.5mg doses and will stay on that dose for another week at least before an increase.

I do realise that I've only just came off Valproate, so a lot of the bad things above may not necessarily be side-effects, and could be symptoms of withdrawal. I wish I'd kept more notes on how I felt coming off Valproate in the past. I did come off the Valproate quickly (halved my dose for a week, then stopped). And of course, the agitation, anxiety, rage and rapid cycling could just be ordinary symptoms of cyclothymia that I haven't been having so much when I've been on Sodium Valproate! This is probably the case. Perhaps it's all the good reviews I've read about Lamotrigine that I've read, but to sum up for today, I do feel that I am in some way, getting better.

Denial can last years, and manifests itself in many ways, for me it was:

"There is nothing wrong with me it must be a mistake".
"I'm not prepared to accept this because if I do I am stigmatized and ruined".
"This is too serious to deal with so I'm just going to carry on as if nothing happened, lardy dar more tea vicar".
"Not me, it only happens to druggies and homeless people".
"I mean, it's not as if I'm walking about with my underwear on my head and pencils up my nostrils".
etc, etc, etc,.

These things ran round my head causing confusion and conflict like nothing before until eventually, I had to accept that I had all the symptoms and past history of a condition labelled cyclothymia, I was correctly diagnosed and the condition was affecting my life in a negative manner. I started coming to terms with my diagnosis and began the process of getting help from my doctor, a psychiatrist and a mental health care co-ordinator. These people were a tremendous help, and I am not in any way belittling them with my following observations, this is just how I see things, and it might fly in the face of "normality" to a degree, which is something I don't have a problem with.

The "professionals" have a duty to help you as a member of society. They also have a duty to protect society, a duty that involves attempting to "normalise" you if you have ticks in the wrong boxes.

The use of prescription drugs to induce mental states that are compatible with societies expectations is well and truly established, and this is where YOU need to take control of YOUR life, and not be bullied into trying to be something you are never going to be. Cyclothymia does not, repeat NOT fall into a mental health category that threatens the safety of the general public. SO YOU DON'T NEED NORMALIZING.

The stigma surrounding mental health issues means that for the rest of my life, when I mention to anyone that I have mental health problems (and those are the words I have to use or they will think I'm being evasive), I immediately cause a state of alarm. Perhaps I'm a bit paranoid, but the way I see it is this,.. I am clearly expected to address this state of alarm, and until I do, it is assumed that I am a schitzophrenic, psychopathic axe wielding homicidal maniac.

The people that everyone would refer to as lunatics are as far away from cyclothymics as they are from any other "normal" member of society. The expression "ignorance breeds contempt" is very much true when it comes to mental health matters, and until you prove otherwise, you are sometimes going to be labelled in an uncomplementary manner by ignorant and narrow minded people. However I am glad to say that these people are becoming rarer.

First steps to understanding yourself
It would probably be a "down phase" that caused you to go to your doctor in the first place, you will probably be given anti-depressants and if you are lucky, your doctor may recognise a mood disorder and refer you to a psychiatrist. And so starts the first steps of understanding yourself. If you were given anti-depressants you are already past the start line and sprinting off into getting to know yourself land. If you are not so lucky, your doctor will fail to realise a mood disorder and you may well end up on anti-depressants when you go hypomanic which will only exacerbate the problem. So, now you are on anti-depressants or mood stabilizers and you are wondering if you feel any different! And that's where it all starts really, trying to take a step back and look at how you feel. You should take an interest in Clinical psychology and start reading those side effects leaflets and alerting family and friends what warning signs to look out for, and when to tell you that you are doing well. Since the drugs you are taking directly influence brain activity, they are not to be taken lightly. It is unlikely that you will end up on the right drugs straight off, but just stick with it. It is also worth noting that omega-3 oils are proving to be a great help to a lot of cyclothymic people, consult this link omega-3.

I'm not going to bother going into why I never stayed on a particular drug; suffice to say that results vary so what's best for me might not be for you and vice versa, I tried allsorts of different medications including:

Lamotrigine (aka Lamictal) - (see above) just started on this (Oct 2009) will update this site when I have more to say on it.

Sertraline (aka Zoloft, Lustral) an S.S.R.I

Paroxetine (aka Seroxat) an S.S.R.I

Olanzapine (aka Zyprexa) an anti-psychotic, used in my case for "mania and agitation"

Sodium Valproate aka Epilim, a mood stabiliser

Mirtazapine (for anxiety) an anti-depressant of the little used N.a.S.S.A group.

A bit of advice to newcomers
All this experimenting with mind-altering tablets was done in an attempt to "normalise" myself. Although doing this is probably necessary, it messed me up even more at first and I was in a right state if the truth be told. If you are reading this because you have been diagnosed as cyclothymic, and are in the process of starting treatment, take these bits of advice from me.

1. Enlist your family and friends to support and observe you.

2. Make sure they understand cyclothymia.

3. Do NOT be fixated on trying to be NORMAL, just try to be what's best for you, retain your individuality, you never will be normal, and those that know you and love you do so BECAUSE of who you are. You can't change who you are.

4. Your goal should be this: Gain control of your life by recognising behaviour that is detrimental to your own well-being and also to those around you that you have a responsibility not to unduly distress.

5. Don't rush things, it will take a while to get things right and you need to be patient with yourself, things can improve.

Treatment, side effects, withdrawal symptoms
Most of the tablets take a month to start to work, then you need a period of assessment, often with awful side effects. Each time you go on new tablets you have to slowly step up the dose up to your minimum required dose. When you do this you will then have at least another month for assessment, and then, if as was the case with me, you need to change your medication, you will probably get even worse withdrawal symptoms when coming off your tablets, AND possibly more side effects from your new tablets. I was just all over the place and didn't know if I was coming or going half the time, I remember not even being able to walk properly at one stage because I was "floaty". I would have the most horrendous vivid nightmares, would feel electric shocks in my head like brain spasms, memory loss, severe confusion, inability to make simple decisions, sickness, loss of appetite, trembling, shivers, and severe fatigue; at one point I remember I even had an increased sex drive but couldn't orgasm!! These are just some of the problems that spring to mind quickly, there were many more. At the same time all this was going on, I was also feeling different emotionally, and thinking different too, and basically to put it bluntly I was fucked up. Unsurprisingly, all this havoc meant I split with my long term girlfriend, who thought this was how I was going to be forever, and she couldn't handle it, shit happens. Getting the right medication for you might take a while, but persevere, and remember your goal, MANAGE yourself, and don't try to FIX yourself.

I have came to realise that with regards to meds, there is an inherent problem in that because we are constantly cycling, it is extremely difficult to work out if the meds are working or not. For example., after a down phase from feb-jul I was beginning to think that the anti-depressants I was taking were having no effect, but the truth is, if I had not been taking them I would probably have been much much worse.. so they were On a normal to high phase, I stopped the anti-depressant because I realised I wasn't down,. but in doing that I no longer benefiting from it's secondary anti-anxiety function, so found myself short tempered and easily wound up,.. and of course, the "things going round and round can't make a decision thing" returned a bit. I took extra epilim to compensate. SO.. to sum up., my further advice would be that medications need constant adjustment depending on what phase you are in at the time. Recognising what phase you are in is an important aspect in managing your life.

Getting Better
In 2004 I finally got my medications right. (Update Oct 2009 - Started a New drug see Lamotrigine (above)) I'm now on 800-1600mg Sodium Valproate a day (this is the drug they give to epileptics) and for me it's a mood stabiliser. I adjust my dosage depending on how anxious or stressed I'm feeling and I constantly strive to take as little medication as is necessary. At the end of the day there is no quick fix, and "getting better" is mainly down to self-understanding. In the past I've taken so many mood stabilisers that I was incapable of experiencing life's ordinary ups and downs. Learning to recognise when I need more tablets has been a major breakthrough for me because now, I no longer have mood swings that fluctuate unpredictably throughout each day, which was my main concern. The more tablets I take, the more they make me sleepy, which isn't a bad thing really if I'm stressed, if I'm not stressy I drink a lot of coffee. I'm also on 45mg of the anti-depressant Mirtazapine which stops me getting down and helps me with my anxiety. I may be able to come off these tablets at some point in the future, but I'll probably be on the Sodium Valproate for life, just like epileptic people are. I get very few side effects from my medications and nothing that causes me any real problems. I believe omega-3 fatty acids may be beneficial so I take them too omega-3. I am living proof that it is possible to overcome mental health issues, I was in a mess, now I'm not. I do realise that I have to be careful with myself, and avoid the types of stress that could trigger "an episode" but believe me when I say this; the stress I've had with all the shit going on in my life over the past few years would be enough to drive anyone mad, but I've coped remarkably well and kept myself surprisingly stable.

It would be foolish of me to say that "I'm better" because it's not like that. Cyclothymia isn't something you get better from, it's something you learn to manage. It affects me almost every day. Sometimes I do have difficulty managing with some of life's problems. I normally worry too much about things over and over again. But it's often not really a problem for me, it's only a problem for other people who worry about me. If I've gone nocturnal, or I haven't eaten for a few days, or I don't answer the door or phone, or if I've gone on a spending spree it's not REALLY a problem. Most of the time now I recognise what's going on from previous behaviour, and now I just take steps to help it pass more quickly. I might go and visit friends, force myself to go to the pub, or just talk to someone on the phone. It's often just a result of forgetting to take my tablets that I start rapid-cycling, and that's because I take the bare minimum amount, so I'm not dulled to life. There are some weeks when I feel I am ready to get a job, be another ant in the big machine and be a responsible citizen, and there are times when I know I am definitely not ready yet. However, a lot of the time I am quite a happy chappy and that's what's most important, being healthy and happy.

Provided I keep taking the medication, and keep steering myself towards the more positive aspects of my life, then I am going in the right direction. My family, friends and good old Dr Hansen all see that I'm being more productive, which is encouraging. I would say that a large percentage of people with mental health problems are not capable of managing their lives like "normal" people do. It is a great shame that so many die when they did not recieve help because of homelessness or drug problems. I might not be productive in the same way as society sees as the norm, but in my own little way by making a page like this I might just save a life somewhere in the world and that will be enough to make up for the guilt society foists on me for "failing to conform".

I've learnt a lot about myself since my diagnosis. I've delved into the deepest recesses of my mind and poked about to see what's what, and I feel I understand more than most people what it is to be human, and when I say I'm open-minded, I mean exactly that, I'm a deep thinker with a wide spectrum of experience and knowledge. I have accepted I'm cyclothymic, and I'm better equipped at dealing with that now than I've ever been, and importantly, I know I'm a decent man and I like who I am.


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Further Reading

Description, symptoms and further information on cyclothymia
G protein receptor kinase 3 gene is associated with bipolar disorder
G protein receptor kinase 3