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                                      MANIC DEPRESSION FELLOWSHIP
                                                          SELF-HELP GROUP


           FEB/MARCH 2003
In this edition we open up two taboo subjects that we
have not addressed before in this newsletter. The first
is „women‟s stuff and mental health‟ which was
discussed at our January meeting with Dr Fiona
Blake. The second is „suicidal thoughts‟. One of our
members asked through e-mail for help in managing
persistent suicidal thoughts. Some points from the
responses are included inside.

I hope you enjoy this edition and find something useful
in it for you. It would be good to hear of your
experiences for a future edition.
                                          Phil                   At that time of the month, keeping a symptom diary
                                                                 became a very low priority for Miriam.

Many of the items in the newsletter have resulted from
discussion in our email circle. At the last count there     Thanks to John (now in Scarborough) I now have the
were 42 of us, mainly around Cambridge but a few            technology to email the newsletter or other documents
from as far as Norwich, Grantham, Coventry and              in Word (.doc) or Adobe (.pdf). If you receive the
Peterborough. In the last few weeks, we have                newsletter that way, it gets to you more quickly and
discussed subjects like chronic anxiety, getting back       saves us a few pounds a year. It‟s also one less for
to work, how to deal with your consultant, lithium with     me to print, envelope up and put a stamp on.
sodium valproate and suicidal thoughts.
                                                            Let me know if you want to join our circle, if you are
On occasions a member has asked a heartfelt                 not in it already. Let me know, too, if you want to
question and received within the hour the experience        receive the newsletter by e-mail.
of someone else that has „been there, done that and
got the tee-shirt‟. Almost always by the next day there                     FEEDBACK APPRECIATED
have been supportive and helpful replies.                      I am conscious that it‟s been ages since we had a
                                                               proper chat about what we‟re doing in the group.
It „s a good medium, too, for sending round bits of            There never seems to be time. Have we got it right?
news that can‟t wait for the newsletter. Four of us got        Our main four services are the St Matthew‟s meetings,
together that way to go and see the film „Spider‟.             the Hilltop meetings, the newsletter, and the e-mail
Importantly, it‟s also been great for keeping contact          circle.
with a number of people who don‟t make it to                   If we‟ve got something right, it would be great to know
meetings.                                                      so we can do more of it. If there‟s something we can
                                                               improve on, tell us so that we can make it better for all.
I always circulate items as a „blind copy‟, which means        If you have ideas for activities (within our manpower
your address remains private unless you particularly           and financial limits) let us know, too. An e-mail, a note
choose to display it.                                          or a „phone call would be welcome.
                                                                 unwanted effects from the medication then the decision
QUESTION THE DOCTOR                                              that person comes to may be to have a trial without.

Once again Dr Neil Hunt, Consultant Psychiatrist, has            A few points I would encourage people to think about are:
kindly answered two questions I e-mailed to him on your          The risk of manic depression recurring continues
behalf. His replies are below.                                   throughout your life and probably never goes away. If you
                                                                 do stop, do it very slowly – over at least two months if not
Though Dr Hunt gives advice to the best of his knowledge,        longer. You can probably make your illness worse by
there is no substitute for a discussion with a doctor who        stopping and starting lithium frequently. Have a backup
knows your personal case well before making decisions            plan if things go wrong,
about your particular treatment.
                                                                 Talk to your Doctor and nurse and try to make a plan
Q.   The first question is about the likely course of the        together perhaps with an advance directive.
condition. One member told me that her psychiatrist
suggested a break from mood stabilisers because she              Q)  The second question is about how long one should
'might have outgrown it'. Another asked her psychiatrist for     persist with a drug regime before giving up on it. A young
a break from mood stabilisers and was advised against it,        man rang me the other day and he had put on a
as the condition is likely to become worse as time goes on.      combination of Valproate and Lithium. Four weeks later he
Can one 'outgrow' MD or does the risk of an episode              was still a bit depressed and had some uncomfortable but
remain (or increase) as time goes on? What tends to              not dangerous side effects. He wanted to know whether
happen over time?                                                he should push for a change or carry on for a while. How
                                                                 long would you expect it to be before you can see whether
A. The course of manic depression is endlessly variable,         drugs (particularly in combination) are going to 'do the trick'
so it is difficult to give an answer that covers everyone!       or not and side effects reduce to a tolerable level?
There is no evidence that you „outgrow‟ the illness though
people have long periods of remission (even as much as           A) There are a few circumstances in which you find out
twenty years). The illness can come in bursts – you can          very quickly that a medicine is not appropriate. This is
have several episodes in a few years and then several            usually because it has a severe or unusual side effect for
years gap before another burst. Some people‟s illness            example getting a rash on Carbamazepine or severe
seems to get relentlessly worse over the years but this is in    diarrhoea on lithium (even when the blood level is low). In
fact uncommon. There is probably overall a tendency for          this type of case the treatment usually needs to be stopped
the illness to become slightly more frequent with time, but      even if you have only been on it for a few days.
this is not a big effect.
                                                                 Judgements about more common side effects take longer
If someone has been well for several years then it is            usually two to three months with attempts to minimise them
always worth reviewing whether treatment should be               such as the time of taking the treatment or splitting the
continued. A large number of factors need to be taken            doses or a different formulation of the tablet (eg slow
into account including:                                          release).

- the course of the illness prior to treatment ;                 Judging how effective the treatment is can take longer. If
- the severity of the episodes and the disruption to life;       you are taking an acute treatment for depression or mania
- how good you are at recognising early signs of the illness     you would usually need to give it at least six to eight weeks
  and whether you have good family support in recognising        at an appropriate dose before deciding that it has not
  this.                                                          worked.

Effectively you would be trying to estimate the chance of        If you are trying to judge a long term treatment the time
relapse and the chance of it having a major impact.              scale needs to be much longer probably at least six
                                                                 months, often a year. The judgement is usually not simply
The common conclusion even after several years of being          does it work? i.e am I completely well in every way? but
well on treatment is that there is a very substantial chance     how much difference does it make? am I getting ill less
of relapse and it could really disrupt life and so it is worth   frequently, less severely, having longer better patches?
continuing treatment. I have several times seen people
who have been well for long periods and getting on with life
give up the treatment and find that they are back to
hospital admission and losing several months of ordinary
life or occasionally even more serious outcomes.                      Mental health information service is open from
                                                                                 12noon-5pm Mon - Fri
However for those who have had mild and infrequent
episodes previously especially if they have a lot of                           01223-566957
GETTING BACK TO WORK                                        SEROXAT – THE TRUTH (Honest, Guv!)
As I said earlier, our e-mail circle discussed getting      You may recall the Panorama programme on Seroxat.
back to work in response to a member‟s request for          Colin wrote in response:
advice. That person had been very tired getting back
to work and felt she was not being given very               “I was particularly interested in the Panorama
stimulating work by her employer. This is one of the        programme on Seroxat, as, apart from general
responses:                                                  interest MDs have in such a subject, my psychiatrist
                                                            has put me on it twice. The reason he prescribed it for
“I have had to face the dreaded return to work on           me as an MD was, he said, that it got out of the
numerous occasions. At the mo I'm preparing myself          system quickly. The reason being, of course, that it
for a return after some 8 months sick leave.                can have a tendency to send the likes of us high.

I know the hardest part for me will be physically           This wasn't the experience of those the programme
dragging myself back into the building, then there's        featured - but they were "straight" depressives, so
the tiredness and lack of confidence. It does take time     different cases to us nut cases. What I found
but try not to give up as it does get easier. Remember      frightening was the way GlaxoSmith Kline, the world's
it's hard enough getting back into the work routines if     second biggest drug company, is able to hide its own
you've had a couple of weeks on holiday!                    test results indicating that the drug has undesirable
                                                            side-effects such as inducing suicidal tendencies.
The important thing is to protect yourself. Before I        Despite it losing a court case in the US and having to
return to work I will meet with my Senior Union             shell out $6m in damages and thus admitting Seroxat
Steward to ensure I'm fully aware of my rights/             could in some cases become addictive, it still keeps
employers responsibilities etc. I'll be returning on        producing it and doctors around the world still
reduced hours for an agreed period (I work for a            continue to prescribe the drug as an easy, but clearly
public sector employer and the policy is that this can      bitter pill.
last for up to 3 months) and I will also be reducing my
Contractual hours. An Occupational Health Doctor has        I was comforted by the news that the company was
liaised with my Shrink and GP to assess my fitness          found in the UK to be in breach of the code of practice
and agree on how my return should be managed (I‟ve          for playing down the drug's potential problems.
insisted on being fully involved in this!). It seems very
unfair to expect someone to return after a severe           What's sure for me is that I won't be taking Seroxat
illness on 8 hours a day. No wonder people get              again, and will be looking for non-drug solutions to my
knackered! Either way, the employer has a Duty of           depression problem.”
Care, which includes mental well-being.                                                               Colin.

I have found that colleagues treat me differently
(some can be patronising and over the top). I get
quite pissed off with people "pussy footing" around
me! I try to talk very openly and honestly about my
illness but have found I have to take the lead in this.

Educate your colleagues and manager - "Manic
depression - an Employers Guide" from MDF is a very
useful booklet ( my current Boss even ordered herself
one!). Try to be direct with your manager - tell them
how you feel , reassure them you are fit for work but
that it is going to take time to completely get back on
your feet. Let her/him know that it would help to have
more stimulating work - it may be that s/he is ( in their
own way) trying to " protect " you . Bosses can be a                 Jason tended to adopt a rather humble
bit thick sometimes and need to be told how it really                posture in front of his psychiatrist.
is! Good luck!”
“MOODY WOMEN, THE MENSTRUAL                               WIMMEN’S THINGS
                                                          My names Ruth and I'm 46. I wouldn't normally reveal my
The speaker at our January meeting was Dr Fiona           age so rapidly but it's relevant to what I'm writing about.
Blake, Consultant Psychiatrist. Prior to coming to        Last summer I had a hysterectomy and found both the
Cambridge Dr Blake had worked in Oxford,                  operation and the recovery surprisingly straightforward,
specialising in helping women with problems resulting     having prepared myself for lots of pain and mood swings.
from hormonal disorders.                                  Thankfully neither of these occurred.

Dr Blake spoke of the impact on mood of menstrual         My male GP had been unsympathetic to treating what
problems. The most common affect seemed to be             turned out to be large fibroids. As a result I transferred to a
that women suffering distress from hormonally caused      female GP whose first reaction was that a hysterectomy
problems had an extra burden to add to depression.        would be the best treatment and got me in to see a
                                                          consultant very quickly.
For example, PMS can cause problems with memory,
concentration and confidence (and physical                It was a shock to be told that a fairly big operation was
clumsiness in some cases).                                necessary, but once I'd accepted this I just wanted the
                                                          process to be over, although prior to the op. I found it very
MD moods do not very often coincide exactly with
                                                          hard to visualise myself being well and fit again I had a
PMS moods but when they do the result is dramatic.        subtotal hysterectomy (leaving the cervix in place).
Dr Blake advocated the use of a symptom diary to
identify whether symptoms were the result solely of       Now I have to take HRT daily. Sadly it hasn't transformed
the hormonal fluctuation - or whether MD mood             life and filled me with the youthful vigour I had hoped for! I
swings were also at play. I have copies of that diary –   will need to continue to have regular smear tests. However,
let me if know you want one.                              it‟s five months later and I am fit again – I've been walking,
                                                          swimming, cycling, shopping and working.
Anti-depressants can improve severe PMS symptoms
but there is always the risk that they will tip someone   The HRT so far hasn't been a problem (I had thought that it
with bipolar into a high. Cognitive therapy can also      might affect my mood) The worst part of the process was
help with PMS as it can with depression.                  staying in hospital. My psychiatrist suggested increasing
                                                          Lithium for this period but as I felt fine. I didn't although
There is a good summary of the symptoms, treatment        doing so would have probably helped as the night after the
and self help of PMS symptoms at:                         op was very difficult mentally. Instead of crashing out
                                                          following the anaesthetic and taking morphine, I was wide-
www.chesterfieldcpd.org/Documents/NO6%20Fam%2             awake, worried that I wasn't sleeping and intimidated by
0Plan.DOC                                                 the unsympathetic night nurse.

The menopause also has an influence on mood and           It was incredibly difficult to rest in hospital - it's always busy
can particularly add to depression. There seems t be      and noisy and the lights never go off completely. After 3
quite a good guide at:                                    days I knew that I needed two things - to increase the
                                                          amount of mood stabiliser I was taking and to get home.
http://www.psychguides.com/DinW%20during%20me             Tracking down an available doctor in a hospital is not an
nopause.pdf                                               easy task, however it was managed and I was given extra
                                                          drugs and allowed home early (this time there was an older
(I apologise for not quoting more of Dr Blake‟s           nurse around who had had the same op and was
material but I was expecting to receive a copy of her     extremely understanding.) One word of warning, I found
notes and don‟t have them yet.)                           out through trial and error that Lithium and Nurofen
                                                          (suggested as a pain killer by a GP) don't mix, not unless
                                                          you enjoy the sensation of lying awake at night with your
                   LIFELINE                               limbs twitching.

      The Cambridge Mental Health Helpline                I'm very pleased with myself for having come through a
        is available 7-11pm every day on:                 difficult situation relatively unscathed. The opinion I
                                                          already had of the N.H.S.(that its nurses are mostly angels

           01223-521521                                   who are over worked and under paid) was definitely

SUICIDAL THOUGHTS                                            “As   someone who has often had suicidal thoughts
                                                             myself, I would say you should discuss the thoughts
It‟s a sad fact of this condition that thoughts of suicide   with someone closer to you than your trickcyclist. You
can occur with some intensity from time to time.             need to talk about it to someone who is not just going
Indeed, a national office factsheet says that‟s as many      to offer pills, but love.
as one in seven of us would commit suicide if we were
not receiving treatment.                                     I really recommend this approach. You might also
                                                             trying going to a church, talking to a priest etc. Priests
A recommendation we would make early on is to                have good insight on these sort of thoughts. The
make sure your mental health team know how you are           other thing is, don't assume that you will have these
feeling and you have access to help, as you need it.         suicidal tendencies forever. They do go away. Try
Unfortunately, at such a time as this confidence in          also to look at the good things you've got, things that
your mental health professionals is low, often               you can tot up on the positive side of your life”
justifiably so. Nevertheless, it is best if you can speak                                                        Colin
with them.
                                                             “Your severe depression with suicidal thinking will
When one of our members asked for help with dealing          pass eventually, even though you don't think it will.
with recurrent suicidal ides, the response included:         One day you will be surprised to find that you feel a bit
                                                             better, even if only for 10 minutes. And then you will
“This is very, very hard. Distraction is the only thing,     start to make (probably rather erratic) progress”
really, and company. TV - but is there ever anything
                                                             The best way to avoid suicide is actually to keep
worth watching!?
                                                             taking your lithium (at the proper dose, not all at
                                                             once!). „Lithium drugs may reduce the risk of suicide
One thing that has helped me if suicidal and not too
                                                             among people with severe recurrent depression by as
depressed to fight it, is reciting poetry over and over to
                                                             much as 82%‟ say those clever chaps at Harvard.
block the thoughts. If you don't know any to recite, try
                                                             Have a look at:
learning some. Nice long old-fashioned poems –               www.news.harvard.edu/gazette/2001/12.13/08-lithium.html
Kublai Khan's my standby. Singing songs you know
well, aloud, in your head, or singing along to a tape or     “Suicidal ideas are so strong that they seem like the
CD you like would work just as well.”                        most profound thoughts about yourself that you have
                                             Jackie          ever had in your life. They have a genuine spiritual
                                                             intensity, and because of this you cannot conceive
“On really bad days I put myself on "suicide watch"          that they may be false. But they ARE false.
with family and a trusted friend taking turns to keep        Nowadays I always try to see suicidal thoughts not as
me company. My "watchers" also kept regular phone            the ultimate truths about the kind of person I am, but
contact, email etc. It must have been really hard going      as ghastly symptoms of a ghastly disease, which are
for them (and my boyfriend had to take time off work)        very hard to endure, like severe physical pain (only
but it kept me going. I often have to hand over my           worse), but which will pass.”
drugs etc to my partner to remove temptation.                                                             Laurie
Keep off booze (if you drink) - it makes it too easy.
                                                             Laurie offers a useful and positive Web reference and
During the bleak 3-6am period, when the world is             there are many others. Look also at:
asleep I forced myself into imagining how life would         www.bbc.co.uk/health/mental/emotional_suicide.shtml#con
be for those I intended to leave behind. I pictured my       sidering. I suggest very cautious use of the Internet at
son, boyfriend, brother etc at my funeral and tried to       these times, though. There are some very sick sites
imagine how they would feel on my birthday,                  glorifying and feeding destructive thoughts. Only a
Christmas, day I died etc. I also considered my              week or so ago, a young man was egged on to take a
suicide might make my son, partner etc depressed             lethal mixture of drugs while online in a chat room.
and who would want to wish this bloody awful illness
on a loved one ? It was really upsetting I can tell you      The Samaritans are also there to help on:
but I had to try to think of my family.”                     08457 909090.
                                                             What all respondents said is that it WILL pass.
ACUTE WARDS                                                YOU AND YOUR CONSULTANT

A few thoughts about acute wards follow. Do you have       Another thread knocking around the e-mail folks was
any memories or comments? Most of my friends who           how to get on with your consultant. It‟s sad how many
have visited say it‟s the last place on earth they would   people have lost trust in their psychiatrist – or never
put someone who has problems with mental health!           had any. The topic was sparked off by Roger:

“I got out of S4 a few weeks ago. Things have              “Recently I saw my consultant as I do every 6 months.
improved slightly since I was there in 2000 in that        Usually I cannot help but tell him how well I am and
there is now an occupational therapist and more for        what I am doing. He always takes this to mean I am
patients to do. The nurses also seemed friendlier than     quite manic! Well, this time I deliberately said as little
last time - fewer agency staff - and the whole place       as possible and acted (well not much acting needed
seemed better organised. The food was okay this time       really) as if I didn't want to be there or have anything
and the Fulbourn site is better than Addenbrooke's         to do with him. The whole meeting went so much
because there's a gym and Internet access.                 better - he actually treated me more like an equal or
                                                           perhaps I mean more like a human being. Strange
However, the ward's still filthy. There was someone        how it is necessary to act and sort of lie to convince a
else's blood on my sheets and curtains and some            consultant of something that everyone else can see
people had nits. A lot of the power points weren't         as clear as anything.”
working so people were running their radios on
batteries.                                                 Jackie adds:

There are still far too many dormitories and not           “Hmm - I think I'm pretty honest with my consultant,
enough single bedrooms so people were keeping              except I don't always tell him when I've been having
each other awake by snoring. Also, there's nowhere to      suicidal feelings. If I'm feeling terrible when I see him,
get any peace and quiet. The windows in the smoking        it comes out, but there seems little point in telling him
room only opened about 2 inches and so the                 "I felt really bad three weeks ago and had to call a
atmosphere was absolutely fetid. I was also shocked        friend round to hold my hand because I wanted to kill
by how much racist and homophobic abuse the staff          myself, but I feel fine now!" I'm pretty sure that if I
had to put up with from some patients.                     didn't tell him much about myself and what I'd been
                                                           doing he'd think I was depressed”
On the plus side, as usual I was surprised by how kind
most of the patients were to each other - making tea
and sharing food, which is amazing considering how                          Not on the Internet?
bad most of us were feeling.”
                                          Rebecca           I realise that not everyone is on the Net. If you
                                                            cannot look up the Web references in these pages
“I do remember that on my 1998 admission, my first          but want to see them, let me know and I‟ll print it off
for 18 years, I was admitted quite late in the evening -    for you. An sae or small donation to funds is
about 10 or 11 at night. There was a lady sitting           welcome but not obligatory.
hunched up on the floor in the corridor, knees to her
chest, wearing scruffy clothes and an expressionless
face. Her hands were tucked up under the sleeves of
her jumper.                                                ~~ We are Cambridge Manic Depression
                                                           Fellowship Self Help Group and you can call us on:
“Oh God”, I thought. At some point later I discovered      01763-260315 (evenings and weekends) or e-mail us
she was a nurse on obs! I can't remember nurse             at: mdf@mdfcambridge.org.uk.
identification being an issue in 1982 - but I can't
remember if that was because they wore uniform, or         We are a local group of the national Manic
more prominent badges or just smarter clothes.”            Depression Fellowship, Charity No 293340 ~~

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