Todays new meds part 1

After seeing a Psychiatrist I was given the option of trying a new medication to help with the voices. To begin with the thought of more medication was miserable but then I decided it was worth a try. If there was something that could dull the voices then maybe i could concentrate more on my counselling and practice the things i learn there without getting distracted. Fingers crossed this would mean my non-epileptic seizures would decrease and maybe I could reduce my other medications. Yes, this is all a big MAYBE but i feel that i need to try. If it doesn't work then it doesn't work.
I spoke to all my doctors and was really glad that they put the choice in my hands instead of deciding for me.
Once I made the decision, I just wanted to get on and try it. The first couple of weeks are always nasty and i wanted them to be over and done with. Unfortunately, the doctors were incredibly thorough (blah!) and wanted to have meetings with me and do tests before they made any final decisions (OK fair enough). I waited and waited...and waited to hear more. The whole time I was just wanting to get it over and done with.
Eventualllly, I got a phone call from my pharmacy saying that my new medication had been waiting for me for 3 months and was i going to pick it up. Yes, the whole process wasn't exactly slick but finally i would get to see if it worked.
I am 2 weeks into taking the Sulpiride now and I am knackered! Thank goodness i'm not nauseous but i am spending most of my time sat down and i struggle even opening the front door. I think it maybe starting to work though. It's too early to make any statements but i feel that the nagging in my head has dulled  a bit and sometimes I don't think about them at all. It could just be I am having a good few days but shall keep this post updated.

Crisis!

Something that really frustrates me is that there is not enough emergency help for mental health problems.
 If a person was to break their leg, they would go immediately to A&E. True, there maybe long waiting times but eventually you would get help. Sadly, however there is little help for having a mental health crisis. People can call the emergency numbers but unfortunately there is little to nothing they can do.
There is a Crisis line which is fantastic but they can only open certain hours. The problem with mental health breakdowns is that they usually happen at night. When I have had a crisis it has been at night when i am alone with my thoughts and there is no-one around to help.
 Sometimes all you need is to talk to someone and at these times charities such as the Samaritans are invaluable. However, I don't think we should have to rely on them. There are other times when you need physical, face to face care, with a person who is trained. Hopefully at some point in the near future there will be a 24 hour emergency line for people having mental health crisis. This would also show that it is a problem that is beginning to be taken seriously.

All those Doctors and all those 'ologists trying to put Holly together again.

Over the years I have seen so many GPs, Specialists, Nurses, Counsellors, Psychologists and many, many more. Some have been brilliant, some ok and some have been pretty damn useless.
 At the moment, I consider myself very lucky. I visit the epilepsy department at Poole Hospital about twice a year. As well as having a specialist in Epilepsy, they have Epilepsy Nurses who I think of as translators. I can go to an appointment with my Specialist and come out not having a clue what he was talking about. When I see the Nurse, she will translate all the medical stuff into words that normal people understand. I then have the 'Ohhh right, now I get it' moment.
 When I lived in Worthing however I had a terrible time. There was a serious lack of help for people like me. I saw several GPs and eventually got a phone number for the Neurology department at my local hospital. When I called to book an appointment there was a wait of 2 months to see the only Neurologist. I know this is the case for many people.
It's also very difficult getting help from GPs as well. I noticed when I saw different Doctors initially, regarding paranoia and hearing voices, they all seemed to hone in on different aspects of what I was saying. Some only talked about panic attacks, some self harm, some the voices and very rarely the fact that I was on anti-epileptics. Fortunately,  when I moved to Bournemouth, my new GP listened to all the different aspects I was talking about and tried to work it out as a whole. Finally! I had someone who was listening.
Since then I have seen Psychiatrists and Psychologists (yes, there is a difference). It can be very difficult to open up to them to begin with. It kind of feels like you are taking all your clothes off in front of a stranger (although that is something I don't often do). It's pretty tough trusting someone enough to tell all your problems when you are already completely paranoid and feel like everyone thinks you're crazy. I did at one point see a counsellor who gave me the worst piece of advice. I had mentioned at one point how I had been dealing with a difficult relationship and she suggested I tell him I was pregnant to get his attention. I never went back to see her and it made me even more wary about talking in depth about my problems with people. The people I have seen since however have been more helpful. I feel much more supported which in turn makes me come out of my shell.
 I think the main thing I have learned in the last year or so, is that all these Doctors are different and it is a very personal thing as to who will be more helpful. In the same way as one kind of medication may work for one person but not for another. I have realised that it is always ok to say 'I don't feel comfortable with that doctor, can I see someone else please?'

Rethink Mental Illness on NICE guidlines

Found this piece by Rethink Mental Illness on the NICE new psychosis guidelines really interesting. I think I've been really lucky in Bournemouth and Poole as most of these guidelines have been met but I know in other places it is very different. One of the reasons I moved away from Worthing when coping with my psychosis was that there was little help or understanding there. I saw several GP's, none of who knew what to do with me. I kept pushing to see a neurologist and was eventually given the phone number to the neurology department at the hospital. I was expected to sort out an appointment myself which had a 2 month waiting list. When telling the neurology department I couldn't wait 2 months as it was an emergency, I got no response. More support needs to be in place in this area.

Please look at the link below

Rethink.org view on NICE psychosis guidelines.

The voices in my head- Part 2

I had never in my life expected that I would one day be telling someone I had voices in my head, so had never exactly made a plan of how to do it. How exactly does someone go about telling another person that they are hearing voices? I was never able to find a manual explaining it.
The first person I told was my friend Martin. Although we haven't seen each other much since college, I will forever be grateful for the way he reacted with absolutely no judgement. I really don't remember what I actually said to him but I do remember that he didn't run away screaming. I had expected that there would be some kind of awkwardness and that maybe I would end up retreating into myself and pretend I'd been joking. Instead he was comforting. He pointed out that I was on mind-bending drugs for epilepsy which made me suddenly think, maybe I'm not such a freak. He told me about a bad experience he had when taking a recreational drug and it seemed that he understood that things can seem so real and scary, even when they're not real.
After finally talking to someone openly about what I was experiencing, I felt an overwhelming sense of relief. I was still being tortured by the voices and feelings, but I knew now that I could start talking about it.
Telling my family was terrifying. They have always been so open and loving but the voices were still telling me not to trust them. I think initially I just said that my stresses and anxieties had returned and I thought I may be having problems with my medication. At this point I had started seeing GP's asking for help which I had told my parents. None of them seemed to understand however and I was really having to push to see a Neurologist. I was exhausted and depressed and decided that I needed to go home to Dorset. I needed to go to the hospital that knew me and be with my family. So, I had to tell them. As soon as had, I knew the voices were wrong and that I could trust them completely.
The more I talked the more comfortable I felt. People weren't looking at me like I was a nutcase, they were just sad that I was going through this. It made me feel less alone and much more open. I still find it difficult to talk about certain things but the more I do, the easier things are to say. I have never had a negative experience from talking to people about my paranoia and hallucinations, just people not understanding. I hate the idea of it making other people feel awkward but usually that is just because they don't understand. Mental health is not something that is often talked about (hearing voices is a particular taboo) so how is anyone supposed to have an understanding. I have found that if I talk honestly and with confidence, then people feel more at ease and interested more than anything.
Being open about the voices hasn't solved all my problems but talking about it was my first step to getting better and just knowing that I am not alone.

The voices in my head- Part 1

Hearing the voices didn't happen over night for me. I was in my first year at college feeling happy and excited by the adventure of independence ahead of me. Acting was what I have always wanted to do and was thrilled to be doing it. As the year went on though, I struggled to concentrate and couldn't focus on the written work and began to lack confidence. I started to lose confidence and thought i could hear my housemates discussing me. The more i thought I could hear, the harder I found it to cope with life until I finally broke down.

A week before the end of my first year I decided to go home. I thought I was struggling with the stress of work and being in the midst of a doomed 'sort of' relationship 'thing'. I thought if I went back home I would be able to talk to the doctors and have a rest and it would all go away.

At home i did begin to feel better. I went to see a GP who sent me to a councilor. I thought I was dealing with it really well and decided to return to college for the second year.

When I moved back I was in a new flat with 2 other girls. I felt confident that I would be able to make friends with these girls. Unfortunately, soon after moving in, I began hearing them through the walls talking about me. They were saying hurtful things about my looks and that I was weird. I started to feel more anxious about leaving my room and was too scared to talk to the girls. I thought I would be safe if I stayed in my room until one evening I heard one of the girls say that her boyfriend had installed hidden cameras and microphones in my room so that they could watch me. Sometimes when I went out I could sometimes see them in the street watching me and knew they were following me.I had told my friends that my flatmates where being horrible to me (not in detail) and they would let me stay with them so I could avoid my flat.

Then one day I had an epileptic seizure in the street. It was the first seizure I had ever had alone. I woke up with a grazed face and a bloody eye. I felt so alone in hospital. All of a sudden, I started to hear my flatmates. They had inserted a microchip in my eye whilst I was unconscious. They could read my thoughts, see what I could see and hear what I could hear. I no longer had anywhere to hide and felt terrified.

I still had 6 months left on my tenancy agreement but my landlord let me move into another of his flats. It just happened to be the flat next door.

The first month of living in my new place was great. I got on well with my new housemates. The cameras had gone and I could no longer hear the voices. I felt safe and free. Then, one night, for no apparent reason, the voices returned. I was looking in a mirror getting ready to go out when, like a switch had been flipped, they were there. The girls voices were watching me through the mirror.

From that moment, everything hit me like a tidal wave. My landlord was in on it too. He had installed cameras in every room. Everything I did they would comment on. The only way i could escape the voices was to drown it out with music. I hated bedtime as then I couldn't escape them. I started thinking more and more people I knew were becoming involved. The voices told me that my mother new all about it and I shouldn't trust her. I was now suffering from extreme paranoia. I couldn't leave the house without thinking everyone I passed was laughing at and talking about me.

I probably hit rock bottom when I spent a week under my duvet crying. I didn't eat and all I could hear were the voices telling me how disgusting I was. They started daring me to cut myself which I would do. They would tell me different ways that I could kill myself. The voices and thoughts were there and just wouldn't leave. I was exhausted and just wanted to sleep but my head just wouldn't stop.

I don't know when I started to think that it may not all be real but i kept thing about it more and more. I think part of it was a desperate hope that I could stop this. Was it was to do with my medication? Could I make it stop? But then that thought also began to scare me. The only way I could find out for sure was to ask someone. How exactly do you ask someone what the voices in your head were. If the voices were real then everyone already knew, and would just lie to me. But if they weren't real, how would people react to me saying I could hear voices. I had to make a decision which would be worse.

How my brain copes with taking pills

I think I have been vulnerable to depression for most of my life. I don't mean that I have always been depressed, only that peoples brains and bodies react to things in different ways. For example, a possible side-effect to many anti-epileptics is depression but that does not mean that everyone taking them will suffer.

 I have lacked self-belief since about 10 when I was bullied at school. Although, that only lasted a year a lot of the insults and feeling that there was something wrong with me, stayed. I also think it is partly genetic as I have members of my family who have struggled with low self-esteem.

 I think it is quite possible that I would still have had some problems with my mental health but I believe that the medication exacerbated them.

Errrm...from the beginning I suppose.

I've never written my experiences down before but I thought, what the hell. Not sure anyone will ever read this and I'm not on any kind of mission to change the world. I'm just a 28 year old female who lives with Epilepsy and mental health issues and I know I'm not the only one.

When I was 13 i had my first epileptic seizure. It was a bit of a shock for everyone as there seemed to be no history of it in the family. All I really knew about it was a brief storyline in Home & Away and the warnings before programmes about strobe lighting. After having tests and being diagnosed by the doctors I actually felt quite proud of it. The seizures were horrible, obviously but I thought it made me kind of special. It was only as the years went on that I started having issues with it. Finding the right medication for someone is not necessarily an easy process. I have changed my medication several times in 14 years. Either I had horrendous side effects or the medications didn't control my seizures. 

When I was younger I always thought that Doctors were Gods and they knew everything. If you had a problem they just give you some magic medicine and it goes away. Growing up I have come to realise that there is still a hell of a lot they don't know. I have seen how much the Doctors knowledge of Epilepsy has grown in just the 14 years I have experienced it but they still only know a small amount.

 I guess it has taken me along time to realise that my 'brain problems' (as I like to call them) aren't going to go away, but it's finding a balance between controlling the seizures and managing the side effects. It's a pretty tough thing to do but I think going through everything has taken me on an interesting journey in life. I'll be honest, I think some of my best qualities (and worst) are because of what I've been through. I often wonder what my life would have been like if I didn't have Epilepsy. As many difficulties as I have gone through, if I was given a wish to have not had that seizure at 13, I'm not sure I would use it.