Anxiety, Depression, Post Traumatic Stress Disorder, Hallucinations…..
did you know, 1 in 4 of us will experience a mental health problem in any year?

This week is not only ME Awareness Week, Sun 11th – Sat 17th May ~ (you can read our ME awareness blog here) but also Mental Health Awareness Week which runs from Mon 12th – Sun 18th May.  Sadly as a family we have been blighted by mental health issues and ME, we feel sharing our stories can help lift the stigma and allow people to feel more comfortable and secure about asking for help and letting people know that in truth they aren’t okay and would like some support. 

My husband has been taking anti-depressants for some time now and has recently embarked upon a course of CBT to help him find coping strategies for our unique home situation, our problems can’t be resolved as they are caused by chronic illness and so we require assistance to help us deal with them instead.  I have only recently been on the antidepressants as I fought against the advice to take them for a long time, I am ashamed to admit, because I gain weight on the tablets available to me (I react to a number of the medications and so have very little choice of medication open to me).  Since taking them I have found some relief from the dark pit of despair I had fallen into but have also had to accept the weight gain that has come with taking them.  I have the support of a fabulous therapist who I see to vent and talk about our situation, it is my safe place to express myself and get support and advice.

I also have three daughters, one with ME, anxiety & depression, another with ME and anxiety and my third with Aspergers, PTSD, anxiety & depression.  Although my husband and I have our demons, as adults we can share and express our thoughts to each other but it is far harder to see your children affected, as it accentuates their vulnerability.
Two of the three girls hear voices.  Keisha hears differing voices inside her head, sometimes clearly and others she can’t distinguish what they are saying. We have been reassured this is a relatively rare reaction to her PTSD.  My other daughter though has had increasingly worsening issues and difficulties these past weeks and became so ill we had to go for an emergency appointment with our psychiatrist.  Her medication was changed over 6 weeks ago and hadn’t suited her and we found just wasn’t working.  We had noticed that her mood had been dropping lower and lower since switching and she had hit rock bottom and reached crisis point.  On top of that she has also been experiencing visual hallucinations and more worryingly auditory hallucinations, which in her case presented as old men talking outside of her head, sometimes a whole crowd of chattering voices, speaking not quite clearly enough to hear what they were talking about, just a whisper away from getting what is being said and then it’s gone and reverts to mumbling voices.  These happen mostly whenever she’s quiet or alone, day or night and on a daily basis.  The doctor has reassured us that she feels it is nothing sinister but something called hypnagogic hallucinations. These, she feels, are occurring as a result of extreme tiredness due to my daughter having such a bad relapse and her ME being severe, on top of that her medication switch for her depression hasn’t had any effect which has resulted in her sharp decline in mood.  So – we are trying a new anti-depressant and are going back for a review in 2 weeks.  We have to watch her very very closely to ensure that she doesn’t show any suicidal traits and have an open line to call should we become worried between our appointment and now.  It is hoped that the voices will dissipate between now and then, if not, further investigations will follow to explore their cause.

The hallucinations as experienced by my daughter can also be accompanied by other psychological or cognitive symptoms including:
  • Anxiety, irritability or agitation
  • Changes in mood, personality or behaviour
  • Confusion, forgetfulness or disconnectedness
  • Delusions
  • Difficulty with memory, thinking, talking, comprehension, writing or reading
  • Heightened arousal or awareness
  • Mood depression or elevation
  • Mood instability
  • Poor judgement
  • Sleep disturbances
  • Withdrawal or depression
Our psychiatrist has discounted the following causes for my daughters hallucinations, but as I said earlier, if they continue after her new medication has had time to take hold then she may re-assess as they may be caused by psychiatric conditions including:
  • Bipolar disorder
  • Psychotic depression (depression with disordered thought processes)
  • Schizoid personality disorder (disorder characterized by detachment and isolation)
  • Schizophrenia
  • Schizotypal personality disorder (disorder characterized by a need for isolation, odd beliefs, and disordered thinking)

However, these hallucinations can also have other causes (as my daughters) including:

  • Brain tumors
  • Delirium
  • Dementia
  • Medication side effects
  • Seizure disorders
  • Severe fatigue  (this is what is currently being considered to be the cause, due to her ME)
  • Sleep deprivation
  • Substance abuse
  • Vision or hearing loss
You can read more about this here: 
 http://www.healthgrades.com/procedures/hallucinationshttp://www.healthgrades.com/procedures/hallucinations
Auditory hallucinations are much more than false perceptions. The combination of personalized contents and interpretational processes contributes to a dynamic and emotionally charged experience that can be better described as a belief system rooted in a perceptual experience. Auditory hallucinations are most likely to arise because of an interaction between perceptual, cognitive, and biological vulnerability as well as affective factors and contextual influences. In addition, the interpretation of these experiences combined with delusional elaboration makes auditory hallucinations a complex and truly individualized phenomenon. Understanding their complexity can lead to useful insights for therapy. – See more at: http://www.psychiatrictimes.com/schizophrenia/auditory-hallucinations-psychiatric-illness/page/0/3#sthash.a45XtqJW.dpuf
Auditory hallucinations are much more than false perceptions. The combination of personalized contents and interpretational processes contributes to a dynamic and emotionally charged experience that can be better described as a belief system rooted in a perceptual experience. Auditory hallucinations are most likely to arise because of an interaction between perceptual, cognitive, and biological vulnerability as well as affective factors and contextual influences. In addition, the interpretation of these experiences combined with delusional elaboration makes auditory hallucinations a complex and truly individualized phenomenon. Understanding their complexity can lead to useful insights for therapy. – See more at: http://www.psychiatrictimes.com/schizophrenia/auditory-hallucinations-psychiatric-illness/page/0/3#sthash.a45XtqJW.dpuf

The above quote is sometime expressed frequently by my daughters when experiencing a low period – that and at times expressing the desire to no longer being alive because life is just too painful and difficult.  This is heartbreaking to hear as a parent but yet we can understand how awful it must be for a child to feel so constantly depressed, anxious and fearful. I do keep repeating to my children though that depression isn’t something to be ashamed of, it is not a weakness.  As a family we have weathered too many storms in too short a period.  This has impacted on all of us, 4 out of 5 of us are on anti-depressants, we are all going to see therapists individually and as a family.  We have been told most people only experience one or two of the traumas we have had, not so many and in short succession. 
However, not only do they have to cope with depression, all three daughters suffer from anxiety.  This makes trips out interesting and we have to plan where we go and what time we go, to be sure that it is the quietest period possible but to have a quick exit plan available should it be too much for them.
I found this picture (below) on the internet which could be any one of my girls explaining how their anxiety & depression makes them feel.
The problem we have though, is that the treatment for anxiety and depression (along with medications) is to work with a therapist and get “out there” and face their fears taking slow progressive steps.  This is difficult when you have ME as you have to rest, plan your day and limit your activities to manage your energy levels – picking the most important/vital activities first and then seeing if you have any energy left in the pot to do anything else, which more often than not is very little.  So we are left with only using talking therapies as the doing isn’t possible, we are currently waiting for specialist therapists to become available for the girls with workers who can try to utilise the CBT approach but adapt it to suit the energy levels the girls have available.  I hasten to add that the CBT approach is NOT to treat the ME BUT to help the girls find coping strategies for their anxiety and depression.
We are aware that we have a long road ahead of us, our problems aren’t going to magically go away or resolve themselves.  What I want to do instead is talk about these issues, and share with you our experiences.  A huge number of the population suffer from anxiety and/or depression and it is still quite a taboo subject for some, they feel embarrassed or ashamed for needing help and feeling this way.  It is NOTHING to be ashamed of, there are times when you simply have to step back and ask for help.  It takes great strength to do that, it is definitely not a weakness.
So, for now we shall take it one hour at a time with our fingers crossed that my daughter responds well to her new medication without too much of a wobble between the transition of coming off one drug and going onto another.  I am hoping that she is soon able to get some relief from the voices and can manage to get some refreshing sleep which she so desperately needs.  For all the girls I hope that the future will find them on top of their anxiety demons and able to feel comfortable in public spaces without shaking, sweating and feeling the urge to run away and hide.
x~X~x