I woke up this morning and felt like my body didn’t belong to me. I was having to deliberate about each footstep and mentally tell myself what to do next. Even for really simple things like washing my hair. I just tried to call my friend, and she’s one of those people whose number I’ve been calling for years; it’s one of those numbers that my fingers know off by heart and I got it wrong. I had to stop, take a breath and then say the number in my head and concentrate hard on where to put each finger. Hanging out the washing and bringing in the dry laundry has been a severe challenge to my co-ordination.
It goes without saying, really, that this is testing my patience somewhat. In fact, even sitting here typing this is testing my patience severely. I’m – what?- a hundred words or so in and already I’ve had to use the spellchecker umpteen times. Usually my fingers fly over the keyboard and I can beat out paragraphs nearly as fast as I’m thinking them. Today, the effort involved is incredible.
It’s making me think, though, about how ineffectual print is to convey the act of writing. It’s hard to express the effort and thought and agony, sometimes, behind each word. My brain is mushed. Seriously. I just typed ‘between’ then, when I was trying to write ‘behind’. When I started writing the previous sentence, I couldn’t spell ‘brain’, either. Part of me wants to leave all the mistakes in, to demonstrate just how rubbish my physical ability to transcribe my mind’s wanderings is, but I am too vain and too much of a perfectionist to do this. I may feel like a retard today but i have no intention of giving anyone else the opportunity to think that.
I can only imagine that these are side-effects from the Lamotrigine. When my GP first said she wanted me on a mood stabiliser, she gave me a week to think about it and told me to go and do some research. Off I went, and looked at all kinds of things – the manufacturer’s statements, which of course are just glorified sales pitches written in reassuring medicalese; I looked at countless users’ and ’survivors’ websites, I looked at the NHS NICE Guidelines for Bipolar Disorder In fact, I looked at so much, and read so many books that my head went a bit potty with the weight of it all. But yes, the overwhelming concensus appeared to be that Lamotrigine was going to be nicer (I use that word with a hefty dollop of irony) than a lot of the other medication available.
You know, I still haven’t received a formal diagnosis. I am also not one to advocate the risky process of Self-Diagnosis With Internet Help. But really, I’m a mental health professional. I’ve worked with people in every state of illness imaginable for over ten years. Technically, my GP can’t make a diagnosis: I have to see a specialist to get one. Have I seen the specialist? Have I chuff. My GP mentioned cyclothymia, but as I understand it – and indeed as all the clinical guidelines instruct the doctors – depression in cyclothymics is ’subclinical’ rather than severe. I know, and my GP knows, that my depression is not ’subclinical’ in any way. Last year I was seriously bloody ill and posed a major risk to myself. God forbid anyone would read this and think that what I’m saying is [adopts Cartman voice here] ‘Nehhh. My depression is bigger than your depression,’ because I’m not. But what I am saying is that my depression is bigger than cyclothymic depression and therefore I need to see the specialist.
Gah. I am sitting here getting het-up and frustrated, and not just because it took me three tries to spell ’sitting’ just then. I am going to ring the GP’s surgery now and ask what’s happening about me seeing the psychiatrist, because the NICE guidelines say that I should. And I’m being prescribed medication which I have only ever professionally observed to be used to treat epilepsy or bipolar disorder. In fact, in the US, it’s specifically licensed as a treatment for both these conditions. The UK licensing issue is sketchier, because neither the BNF nor the patient information leaflet make any mention of any mood disorders whatsoever. Glaxo SmithKline’s clinical trials register is interesting, though. There is a part of me (mostly the vain woman part) that is extremely concerned that they felt the need to be researching the emergence of PCOS -type symptoms in female Lamotrigine users.
But I digress.
I am Not Well. Today I am also Not Well due to the medication I am taking because I am Not Well.
* * *
I just had a phonecall from a guy who’s an occupational therapist with the local Primary Care Mental Health Team. This is a new team that works with GP services. My GP had referred me to them to explore options for counselling and support. The guy – we’ll call him Dave – said that he was loathe to work with me directly because I’m a member of staff and because there might inevitably be occasions where our paths would cross in the future. He then directed me to my employer’s Staff Psychological Wellbeing Service, who have an appointment for me tomorrow to see a counsellor there.
It’s a two and a half hour bus journey away. Plus a taxi to the place. Then two and a half hours home on the bus. All because I’m a member of staff and local services are ‘loathe’ to see me. the knock-on effect of this is that I have to cancel my GP appointment in the morning, and oh! joy of joys! the next available appointment is on Friday 14th, by which time I will have run out of all my medication. I have the option of calling every morning at 08.30h to see if there’s an ‘emergency’ appointment, but they can’t guarantee which doctor I’ll get to see. To say I am well and truly cheesed off with all this is an understatement.
The secretary at the Wellbeing Service asked me the reason for my referral. She said, ‘Is it stress?’
I almost laughed.
If I wasn’t stressed before, I certainly am now.
I’m going to buy a big magic wand and wave it over you until you’re better. It’s all that can be done!
Emma,
I happened to stumble upon your blog because I googled the words “lamictal wrongful diagnosis deja vu”, (although I still can’t find the word deja vu in your site). And why was I googling these words .. I’m glad you asked… It’s because for two years now my life has been primarily about finding out how to reverse the effects of wrongfully being on both Lamictal and Trileptal. When I read just the first few words of your Sept. 4th blog my mind lit up like a forest fire as I my eyes eagerly scanned line after line. Kind of. The way I read, similar to both your typing and reteaching yourself to walk after waking up en route to rid yourself of morning breath, is not the way it should be. When I read my eyes, unfortunately, will not follow words on the page. Also this is simulatenously accompanied by a weird self-conscious “clikcing in and out” where my mind plays a type of deja vu-like game with me where it will take what I’m doing now and insert that picture into a memory of the past where I was doing the exact same thing, (like reading a computer screen), probably as a way of pointing out to me how wrong things are.
I felt compelled to write after I read so many things that I, too, experience. All I can offer is my experience to you. Just don’t undermine my authority. Nice Cartman voice by the way. I don’t know how to spell authority in a phonetically proper way.
I was misdiagnosed with bipolar II over two years ago and started experiencing symptoms of epilepsy, (although much heavier on the mental side: deja vu, depersonalization, derealisation, etc than physical), as the result of wrongfully being on both Lamitcal and Trileptal (anti-convulsants), which I took for about 6 months. It’s been two years since I last took these meds, however, I am still experiencing these symptoms. I recently had a SPECT scan performed, and, interestingly, I have massive temporal lobe damage from what the scan has determined to be a physical substance. I say interesting because epilepsy seems to be a temporal lobe disorder and it would be a logical conclusion that these meds go to work in that area; thus the explanation of this all.
I can tell you all sorts of weird stuff that, unfortunately, you might just relate to by personal experience.
Anyway, that’s enough for now. How have things been recently?
Jordan
My email, in case it’s hidden from you, is jjensen194@yahoo.com