To me, the word psychiatric conjours up emotional or behaviour problems. For example, depression, anxiety, euphoria or behaviours seen in illnesses like schizophrenia where the sufferer hears voices or has uncontrollable rage. However, in the medical profession the term psychiatric seems to encompass much broader symptoms eg. sleep disturbance, stammer, and cognitive issues such as problems with word finding or memory. It’s always amazed me that sleep disturbance is seen as a mental health problem – your kidneys can go wrong, your digestive system can go wrong, yet the proufoundly complicated mechanism which renders us unconscious for large parts of the day isn’t allowed to and if it does go wrong it’s put down to stress or worry. Bullshit! The same applies to symptoms such as stammer. I developed a stammer when I had very severe M.E. which, as I recovered, disappeared. To me, these symptoms are neurological not psychiatric, so I’m not going to cover them in this post, and will concentrate more on emotional issues.
ME is a neuro-immune disease, and like similar diseases such as Multiple Sclerosis, ‘emotional lability’ is listed as a symptom. We don’t really understand how our emotions work, but it’s obvious that, although driven mostly by environmental factors such as grief, stress, getting upset due to an argument etc, they are also affected by non-environmental factors such as hormones and neurotransmitters. I spent most of yesterday on the verge of tears purely because I was ovulating and am totally back to normal (whatever that means ;-) ) this morning!
I’ve suffered quite profoundly with emotional lability since developing M.E. and, for me, this symptom is influenced by activity and being ‘over-tired’. On the rare occasions I go out for the whole day it will get to about 3pm and I start to feel really emotional. It’s incredibly hard to explain, but I feel like I’m sobbing hysterically on the inside yet on the outside I appear perfectly normal. My head starts repeating the words “I’m tiredddddd!” over and over in a whiny voice and I honestly feel like a little kid who’s way past her bed time. My emotions are just raw and I feel completely overwhelmed by the world and everything in it. If I go home and have a proper rest in bed I’m fine and back to normal a couple of hours later. It’s bizarre to be so out of control of my feelings, but it’s just something I’ve had to get used to.
The other main symptom of emotional lability I get happens when I’m relaxing at night in bed. I have the sensation like my stomach’s dropped, a bit like when you’re dreading an event or have just heard bad news – butterflies but with your heart in your boots. I have no idea what this is all about, but it lasts about 30 minutes then, when I’m totally relaxed, it just goes. It’s not pleasant but again is just something I’ve had to get used to.
Both of these symptoms can also appear when I’ve overdone it. If I’m on the computer and my stomach suddenly drops, or if I’m out and I suddenly start to feel weepy, I know I’m past the time when I should have stopped and be resting.
There are lots of theories as to what causes emotional lability in neurological diseases, eg. adrenal dysfunction, sympathetic/parasympathetic nervous problems, but in truth no-one has a clue what’s going on.
Mast Cell Disease
Anxiety is a recognised symptom of anaphylaxis and is often the reason many people with mast cell diseases have previously been diagnosed with an anxiety or panic disorder or their symptoms labelled as psychiatric or “all in your head”. The mediators released during a mast cell event, eg. histamine, cause blood vessels to widen. This lowers blood pressure and the heart starts to beat more quickly in order to bring blood pressure back up. This can trigger the flight or fight mechanism and quite severe feelings of anxiety and/or mimic a panic attack.
Mast cell mediators also directly influence neurotransmitters such as dopamine and seratonin, which amongst other things are involved in regulating our mood. Histamine also causes our muscles to contract and it’s hard to feel zen when every muscle in your body is clenched! There are several current research papers which are looking at the link between histamine release and severe psychiatric disorders such as schizophrenia and bipolar.
The first drug reaction I ever had in 1998 made me pace round my bedroom for hours, extremely agitated and highly anxious, acting like I’d totally lost the plot. And when my mast cells really starting going berserk in 2012 I had severe anxiety after every food I ate and even after drinking a glass of water. The anxiety isn’t mental or emotional, it’s purely physical and totally outside my control. Steady breathing (in through my nose and out through my lips) does help, as does lying in a warm bath, but for the most part I just have to ride it out. These mast cell reactions are really unpleasant and often my only way of coping is to tell myself that no-one ever died purely from feeling anxious. Of course you can die from the other symptoms of a mast cell reaction, but that’s a topic for another day!
I’ve suffered from depression most of my life. I didn’t have an easy child-hood and obviously as a teenager my low mood was put down to the legacy of that. Puberty was tortuous and I used to wake every day wishing I were dead. Hindsight is a wonderful thing, and I now know of course that with the changes in my hormones my mast cell disease would have been rampant (I developed migraine at 13 and my period pain was off the charts, both of which are symptoms of mast cell disease). I saw a Psychologist when I was 18 and was put on an anti-depressant. Luckily the Consultant chose Dothiepin, a tricyclic anti-depressant, which as a side-effect has anti-histamine properties. It really helped and, along with the counselling, did me the world of good.
By the time I was in my mid twenties I no longer felt I had any unresolved emotional issues yet was still chronically depressed, albeit at a well functioning and low level – to see me you’d never know as I’m confident, chatty, and bubbly. This isn’t forced, or a face I put on, I think I genuinely have this kind of disposition, it’s just that the depression was always there lurking in the background. Depression runs in my maternal family and I just thought it was in my genetic make-up and something I’d simply have to put up with.
However, starting a low histamine diet, and taking antihistamines, has changed everything. There are days I wake up in such a good mood it’s completely un-nerving as I’m just not used to feeling happy for no good reason. Of course, the peri-menopause has started and my wildly fluctuating hormones are buggering up my mood no end, but I’d hate to think how much worse my emotional health might be if my histamine levels were still sky high!
As I’ve mentioned before on my blog, I think I inherited both EDS and MCAD from my Mum and am convinced other members of my extended maternal family have mast cell issues, which largely manifests as panic and depression. One cousin in particular has severe migraine disorder and chronic mild depression yet I can’t persuade her to try a low histamine diet or to try anti-histamines – you can lead a horse to water but sadly you can’t make it drink.
Pre a proper diagnosis, many people with M.E., EDS and/or MCAD have at one time or another been told their symptoms are purely psychiatric and may have been offered anti-depressants. These can be mildly effective, as some help with pain and some have weak anti-histamine properties which unwittingly help with mast cell disease, but they’re a sticking plaster over the root cause of the problem. You know yourself. You know if you’re genuinely suffering from a mental health disorder, or whether there’s something else going on. My bubbly disposition was in stark contrast to my chronic depression and I’m really very stoic and generally not prone to panic attacks or anxiety – there was something else at play, and from a very early age. You’re not losing your mind, you’re not a hypochondriac and you’re not expressing “abnormal illness behaviour” – if you think you have a mast cell issue or something else causing your psychiatric symptoms keep pushing for an accurate diagnosis as the right treatment could change your life.