‘Psychiatric’ symptoms

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.

M.E.

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.

 

 

 

 

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17 thoughts on “‘Psychiatric’ symptoms

  1. kneillbc

    How bang on you are!! I was in hospital with:
    -abdominal pain
    -extremely severe dermatographia
    -severe mouth ulcers
    -a history of allergies and autoimmune disorders
    -facial flushing
    -wildly variable blood pressure. (At rest-from 190/160 to 80/50 within an hour)
    And every single symptom was dismissed as ‘stress’, except the abdominal pain, which was dismissed as my having a ‘sensitive stomach’. Finally, after a month in hospital, an angel came in and said “You are allergic. Severely. You are having a severe allergy attack right in front if me! Right here, right now” Even I didn’t believe her at first- because I thought I knew what I was allergic to. My discharge report? The diagnosis…..”depression”. Sigh. Thank Goodness I am mentally healthy enough to know that that was NOT the case.

    One little physical symptom that most people are unaware of is having bumpy backs of the arms. I had a naturopath tell me that those bumps (they look like goosebumps, or even tiny acne, but they aren’t affected by temperature or any pimple cream) are a definitive sign of undiagnosed/untreated food allergies. Every person I have met who has arms like that are people who are prone to allergies. They either were allergic to milk as a child, or have a serious allergy, etc., etc. I used to have them, but in my 30’s, when I discovered my first ’round’ of allergies, they, and my migraines, disappeared. It’s not a symptom that many MD’s are aware of, even though it is relatively well documented in medical literature. I have never had an MD refute the connection, and several have acknowledged that there is a known link. Why allergists and immunologists, and frankly, all GP’s aren’t aware of this, I have no idea. My guess is because it is not a ‘bothersome’ symptom, so they are taught to ignore those. (Sigh again…..).

    Karen

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    1. bertieandme Post author

      Looking at your list of symptoms there Karen it just astounds me you were given a diagnosis of Depression! I’d just rather a doctor would say “I know you’re ill but I don’t know what’s causing it” than to give a diagnosis which is blatantly incorrect. Didn’t know about the bumps on the arms – interesting. Jak x

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      1. kneillbc

        Hi Jak. It is fascinating, isn’t it? I think that maybe is the crux of the problem. Doctors used to be taught that saying “I don’t know.” would erode the patient’s ‘confidence’ in the physician. Of course, that is very old fashioned thinking, but while more prevalent in older doctors, I’ve met some younger ones who do that as well. The overwhelming majority of physicians I have met are very giving, empathetic people who want to help; it’s too bad that somehow one MDiety can spoil it for everyone!

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      1. kneillbc

        Interesting Marjolojin, I had not heard that before. Of course, vitamin D also supports immune function, so perhaps there is some similar mechanism going on…I’m not an MD, so that is a pure guess on my part.

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  2. Pam H.

    Yes, yes, yes! I too wake up and feel almost too happy for the circumstances that I live with because of this disorder. I was on antidepressants for many years because of depression. Not sure that it was depression or PMS, I was healthy, happy and so were my husband and children. So not sure what the dark cloud was all about. When I became ill with mast cell disorder I could no longer take the antidepressants due to anaphylaxis. I had a 2 or 3 really low weeks. I even got a script for the Doxipen, but when my Cromolyn kicked in, along with a low histamine diet, things changed. That dark cloud was gone, it was like I had waited my whole life for the those clouds to be lifted! Honestly I think it was those pesky mast cells all along.

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    1. bertieandme Post author

      Absolutely Pam! Like you, I often wonder now how I can be so happy despite my crappy circumstances but the truth is for the most part I am 🙂 Like you’ve said, once my diet and tablets kicked in it was like a cloud had been lifted. Jak x

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  3. Elizabeth Milo

    Will you remind me what antihistamine regimen you are on? And, when you originally went low-histamine, did you eliminate what you knew you reacted to or use a list or was it a long-term search for the culprits. I ask because of your comment about not taking the horse to water… I hate medications so much and react to most of them, so I’ve been hesitant to try much. Also, I keep pushing the boundaries with histamine foods because I want to get back to a normal diet. My problem is I have no skin involvement or itchiness, so everything is such a question mark. I’m lying here with such a severe headache for the fourth day in a row – and it never really goes away on good days – and I wonder what regimen I should give a try and for how long. I have an Rx for Hydroxyzine, I could try Zyrtec and Zantac again… Maybe a much stricter diet. I dunno. Talking out loud. So sorry you were depressed for so many years. X

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    1. bertieandme Post author

      I started the low histamine diet on 3rd March 2013, so nearly 2 years ago now (god where has that time gone?!). I just followed the diet that’s listed on my blog here. Took 4 months for the anaphylaxis after eating to finally go. And it probably took a year for me to notice that I had more energy, was sleeping better, was more mentally clear and my mood had improved. I’ve found I react badly to apples, bananas, buckwheat and cashew nuts – none of which are high in histamine but I feel crap if I eat them! I figured that out as I was following low histamine but still feeling rubbish. I looked at what other foods I was eating daily and took each one out for a week in turn then re-introduced. Apples gave me a tingly mouth. Bananas and cashews made my head extra foggy. And buckwheat makes me feel truly awful and very MEish. It’s a long process which took about 6 months in total.

      I’m on 10mg liquid Citerizine (h1 blocker, brand name Zyrtec) and 3 x 200mg Cimetidine (h2 blocker, brand name Tagamet) daily. That’s all the meds I take. I tried Zantac and it made me really foggy headed, which is why I switched to Tagamet. You know I’m with you on the meds situation – trying a new drug gives me an actual panic attack :-/

      I had a daily headache for about 15 years. I feel for you so much as it’s a truly awful way to live. In fairness, my daily headaches had stopped before I ever went low histamine and I honestly don’t know why! But my migraines are much less now I’m low histamine and on antihistamine meds and I now usually only get hormone related ones (ovulation and period).

      I really hope you can find some answers for your most persistent symptoms and wish I could be more help! xx

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      1. Elizabeth Milo

        This was actually really helpful, thank you! I think this past year I’ve been trying so hard to help myself with food (stay tuned for a rant about the evils and dangers of elimination diets), that i forgot that maybe this is just ME. Or even MCAS. I had eliminated all the typical migraine culprits for so long and there was no help, but, usually, rest helps the headaches- sleep, darkness, quiet, meditation. So, maybe I’ll give antihistamines one more try and, after that, chalk it up to ME. It’s just one of the neurological problems.

        And maybe I’ll stop being so stubborn on certain foods and eliminate them for s week or two (chocolate, apple, sweet potato, rice, coconut – I’m really loathe to give them up, but what if I’m headache-free?). Thanks for talking it through. X

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        1. bertieandme Post author

          Reflux entirely. If it weren’t for that I wouldn’t take the H2 (or maybe I would – I’ve been on it almost from the start of my MCAD explosion so don’t know if it just helps the reflux or whether it helps the MCAD in general. Can’t stop taking it long enough to find out cos my reflux goes bonkers and it’s agony).

          ME is a bitch. There is no cure – nearly all my ME friends have tried this and that diet and they’re still all sick. MCAD is also a bitch and diet doesn’t cure that either – helps with some symptoms yes. Cures it and and gives you back your life, absolutely not sadly because like we’ve just said mast cell activation is affected by all sorts, from the weather to menstruation.

          If, god forbid, you’re like me and still sick in 20 years time you’ll be reading online about the latest food cure, proably pods off the Monkey Puzzle tree or some other shite, and like me you’ll just sigh cos you’ve heard it all before, a hundred times over the years, and know for the most part they’re all talking a load of old bollocks 😉

          God I’m jaded and cynical but at least I recognize the fact LOL! x

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            1. kneillbc

              You two know this, but other readers may be interested to know that starting Zyrtec (ranitidine, an H2 blocker) improved my ‘brain fog’ in two days. I’m not anywhere near 100%, but I’m well above the 10% capacity I was working with! I don’t have ME, I only have MCAD (oh, wait, and hypothyroidism, systemic idiopathic arthritis…), which is why I’m guessing it is SO obvious in me. It has also helped with swelling all over my body- a few people have even asked if I lost weight, or changed my hair- because my face looks like me again!

              Karen

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                1. kneillbc

                  Sorry, I didn’t see this until today! In divided doses, I take a total of 40 mg of cetirizine (generic form of Reactine) orally every day (that’s an H1 blocker like Zyrtec). I also take 100mg of ranitidine (generic version of Zantac), IM (intramuscular) every day. When I was taking the oral, it was 300 mg a day, but I only took that for about four days total. (The ranitidine is the H2 blocker, and the one that has made a difference to my cognitive functioning and overall mood). I do want to mention though, that I am a large person, so by weight, these doses are not as high as they first appear. I am incredibly resistant to medications in general (and recreational drugs like alcohol and caffeine as well). Hope that helps!
                  Karen

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