PNI, anxiety and depression

[cheshire]

Hi Everyone

Some of these questions have been bugging me for quite a while - what do you think?

1. What causes PNI?
2. Is there a time frame within which you can get PNI? e.g 12-18 months
3. Is it the same as anxiety and/ or depression?
4. What part do hormones and other physical changes caused by having a baby, play?
5. Why do GPs so rarely, if ever, use the term PNI?
6. Why is this illness stigmatised and why do people not like talking about it?


I will post my reply below.
This is my way of coping, to keep thinking, hope this is ok.
Hopefulx

[cheshire]

I chatted with hubby last night about this and gave it more thought..so here's the updated version..just based on my own experiences really.

1. What causes PNI?

Obviously I wish I knew. I am guessing that the factors are diverse and complex but I find it hard to doubt that chemical/ hormonal/ physical factors are in play. I had a traumatic birth and also a traumatic event before the birth

2. Is there a time frame within which you can get PNI? e.g 12-18 months

My mental health team say it can only occur within the 12 months period ?? I don't accept this of course as I'm well beyond this time fram and am not yet fully recovered.

3. Is it the same as anxiety and/ or depression?

I believe that it is different. First point is that we have had a baby. I suppose my other point is about the pattern of PNI that is shared by survivors and also the very fast onset and severity of symptoms..but I know it can be so similar to A and D, but I am not convinced it is the same thing. Only my opinion, hope no-one minds me saying these thoughts out loud that are in my head?

4. What part do hormones and other physical changes caused by having a baby, play?

I think this must play a part which is why I gave the response I did to 3. I read yesterday something about the production of breast milk could lead to this? Certainly some post partum USA sites favour the idea that chemicals/ hormones play a part.

5. Why do GPs so rarely, if ever, use the term PNI?

This may be my paranoia, but why do very few professional actually say PNI/D during consultations?

6. Why is this illness stigmatised and why do people not like talking about it?

I can only assume ignorance here and a lack of real understanding...but I think there is such a spectrum, maybe it is almost impossible to understand fully. I suppose where there is lack of knowledge and understanding, there is fear, false beliefs and stigma....
Having said that, I think times are changing around PNI/ PND ... hope so anyway

Hopefulx

[yoyo]

Interesting thread - guess these are questions we all wonder. Me for one.

My thoughts: (based on nothing but my own experiences so feel free to ignore them)

1. What causes PNI? - For me I think it was a long traumatic labour with very little support from medical staff - in fact quite horrible staff members. Then mix that with being severely anaemic and rushed back in to hospital and also the whole hormones going barmy = PNI for me.

2. Is there a time frame within which you can get PNI? e.g 12-18 months - For me I started with PNI at around 2 weeks after brith (at least that was when I first noticed it) I think that it can happen much later - it's all about recognising it.

3. Is it the same as anxiety and/ or depression? - Interesting one. I think that PNI is a seperate illness personally. I believe that the symptoms and feelings / some of the thoughts etc can be very similar to anxiety & depression. I think though as PNI has a trigger (birth in some way or other i.e. you have a baby that is why you've got PNI)
it must be different. PNI can be overcome.

4. What part do hormones and other physical changes caused by having a baby, play? HUGE PART - I think the whole hormone balance is key as hormones are who we are - if our hormones are screwed then so are we! The whole body changing thing can cause low feelings too I'm sure.

5. Why do GPs so rarely, if ever, use the term PNI? They've not been through it themselves!

6. Why is this illness stigmatised and why do people not like talking about it? They've not been through it themselves so have no idea what it's like. Generally mental illnesses are viewed in this way - it's as if you've lost the plot (which I did for a while I'm sure!!) There's no shame - it happens to loads of people, sometimes they don't like to talk about it as they don't know what to say or you've hit a raw nerve? No idea

Wowo - I waffle!!LOL

[cinders]

Hiya Hopeful,

Definately an interesting thread, which got the old grey matter ticking over!!

Again, my thoughts how I see it....

WHAT CAUSES PNI....A stressful lead up to the birth...hubby away, pre eclampsia, coping with the family/house alone, isolated (moved here when I was 5 months pregnant and didnt know anyone) and wanting everything to be perfect for the family(didnt have time to be ill or cry) ...coping alone was my biggest thing.

TIME FRAME FOR PNI....I think this is down to personal situation, but I really dont think there is a time frame from what I've read..I had the start of it in my last eleven days of pregnancy (11 days late) and then when my daughter was about one (I think)...shes now three and I'm still having setbacks...maybe thats because I havent sorted through some of my issues???

IS IT THE SAME AS ANXIETY/DEPRESSION...anything can kick start depression and like birth that is also a trigger, so they could be the same ish/or the same in that a life circumstance has triggered it off??

HORMONES PLAYING THEIR PART...I think hormones do play a big part, plus the tiredness, feeling that you look like a deflated ball (for me) and having no ME time....so much stress!!

GPS USING THE TERM PNI...This is so true and I hadnt thought about it before...when I was first diagnosed my Dr said he thought I had delayed PND, but since then hes just mentioned anxiety!! Who knows!

PEOPLE NOT TALKING ABOUT THE ILLNESS...Definately a lack of understanding...I think if you mention any mental health illness people think you're going to start running around drooling with pencils up your nose!!! Ok maybe that was just me, but to be honest after suffering with this I am so much more understanding of illnesses and I guess that has been one positive that has come out of this illness for me.

Hope I havent waffled too much...just my thoughts...Love n hugs Cinders xxx

[monica]

Hi

Your qs are definately the million dollar ones!

1. What causes PNI?

Didn't have PNI with 1st child inspite of difficult birth and probs after. Also had probs with boyfriend, then. In between, had 2 miscarriages. Very stressed with early stages of pregnancy., but fine later. 2nd birth just as I'd planned and fine. Felt really well. No baby stresses at all. Baby perfect - only up once a night even as newborn. However, fixed obseesion with enjlying having 2 kids and wanting to be perfect mum/homemaker. Felt exhausted, not enough sleep. Feeling tearful quite often. Initial support from parther great but this changed. Stress due to not getting on with partner. Taking on too much. Worries about eldest son's health and mine, then obsessing about it.

2. Time frame.

For me 4 months after babe born after an exhausting few days, when got pressure round right eye. Maybe had signs before this, phyical signs, hot hands, tiredness also teaful.

3.Is it the same as anxiety depression?

Don't know, but maybe different as due to pregnancy/childbirth. Seem as many common themes surrounding PNI. Obsesson with death, thoughts about self harming, inability to cope, physical symptoms.

4. hormones playing their part.

Yes, definately. Never had any mental health probs before (or at least major). However, if certain things had been different eg. more support, ability to chill out abit more, supportive partner, would I have got PNI? Or was it something I was destined to get?

5. Term PNI.

No one other than on this site uses PNI. Everyone else incl CPN, uses PND.

6. People not talking about the illness.

I'm sure there is stigma attached to mental illness, but I genuinely think many people incl. GPs, HV don't know much about PNI, especially physical symptoms, which have plagued me. that's been my experience. I've talked about it to everyone and many mums have said they felt a bit odd/behaved oddly but it passed. Don't know anyone in my circle of friends who's had it badly.

Very interesting to see what others say.

Monica

[Veritee]

I will have a go at this later - I have a meeting tonight
But these are huge questions and even after several years of supporting women with PNI I can not answer them

We need the medical profession to do the research

But about the term PNI, PND

While in general use the term PND is used to cover all emotional/ mental suffering experienced by women which last for more than a few weeks after the birth, Post Natal Illness more fully covers the entire range:

The foremost international organization for Perinatal health refers to this as PNI and origianlly puerperal mental illness.

The society was named after Victor Louis Marcé, a French psychiatrist who wrote the first treatise entirely devoted to 'puerperal mental illness,' published in 1858.
The Marce www.marcesociety.com/
Although they do refer to Postpartum Depression and Postnatal Depression within this category

also:
The longest running body to support women with PNI in this country use the term PNI, ( The Association of Post natal Illness, APNI) So does PNi-SHA
www.pnisha.org.uk/

and also many perinatal specialists refer to it as PNI - in Scotland they prefer the term PERINATAL MENTAL ILLNESS
see:http://www.show.scot.nhs.uk/sehd/mels/HDL2004_06.pdf although the legislation still refers to PND


Academically PNI refers to the whole range of illnesses women can get after birth ie Baby Blues, Puerperal Psychosis, Phobic anxiety, Obsessive anxiety and of course depression

We prefer it partly for the same reason - we would not want any woman who felt the way she feels is not Depressive to feel she could to use this site or that someone with Puerperal Psychosis also to believe this site and forum is not for them

and also because the description of 'depression' fits so few of the subjective experinces of women who use this site

But the term in common usage is PND

[monica]

Hi

What I was thinking, but didn't write, is that everyone I have spoken to, like GP, CPN, HV call this illness PND and talk about the depressive/emotional symptoms, and the CPN and various leaflets talk about physical effects of anxiety. However, for me , there is so much more to it, as you know as I keep going on about it. The physical stuff for me preceded any depression symptoms, but no one talks about this or knows about this and as you mentioned Veritee, other women suffer diferently. Could it be that the vast majority of women suffer solely the emotional side of this illness.

[cheshire]

Hi Veritee and Everyone,

The Marce site is interesting, I didn't know about the history...or the term 'puerperal mental illness'...

I know these are huge questions - aren't they?!! But think I just needed to ask out loud and ask people here what they think and if they think about these things too - if you know what I mean!

I agree that PNI at least captures the full range of experiences and symptoms. I suppose anxiety and depression are like a double sided coin - some of us experiencing more anxiety than depression and vice versa. Just thinking out loud!

I suppose one of the problems with the term PND is that if you get the physical anxiety problems first, you probably wouldn't think you had PND or were depressed - so the term perhaps doesn't help women in recognising symptoms or knowing what is wrong.. I had no idea I might have 'PND' because like Monica, had the physical symptoms/ anxiety first. So I personally think PNI is a better name for it

Hxx

[Veritee]

Hi Everyone this is very interesting isn’t it!

Because I too got the physical problems first and it was this tha tfirst made me feel there was something wrong

-and not the few one off 'mental, emotional' issues I experienced i.e. hearing chanting voices while still in the hospital and a panic attack the first time I was left in the house alone with Caja- because these very occasional 'mental' ill effects I could dismiss as tiredness or first mother nerves,

But I could not ignore the constant severe headaches, dizziness, mussy head, cloudy vision ( the cloudy vision was a biggy for me as our mother was always partially sighted and when blind in her 40s so we have always been hyper aware of vision problems)

Later feeling I had or having flu like symptoms or colds all the time

- and the mucus problem this caused meant it did actually lead to a 'real' physical problem as I had to have a sinus operation ( actually restructured my sinuses ) as my sinuses got blocked and infected so their must have been some reality in the fact I did have a 'runny' nose for months as I had not had sinusitis before, -
Later still chest pains, joint pains and breathlessness got added to the list ..


I could go on and on - from being very healthy before the birth I had so many physical symptoms many that I have even forgotten, that it is not until someone says what they had that I realise I had this too - but above are my main ones.


The problem was that when I went to the GP with these physical problems all they could say was it was probably mental ie stress.

You would have thought that this would have given me - or even them a clue that I might have PNI but it did not and the GP certainly did nto suggest PNI or even PND .

It did not make me think this because in the past I had had some psychosomatic stress symptoms and this did not 'feel ' like this at all!!

with PNI my symptoms did not fluctuate with the stress I was under i.e. a headache at the end of a stressed day, a doggy tummy in the morning of a day when I had something nerve racking to do...

With PNI my symptoms they were not related to particular stress and I really did feel very ill all of the time, I had never felt so ill for so long before or since ( excluding acute medical emergencies, burst appendix and infection after my accident of course)

I really did feel very ill, as if I had some very serious illness that was affecting many different things - of course my mind started to consider what such an illness that gave so many diverse but real symptoms could be .....

And all I could come up with was an auto immune disease, HIV/AIDs or cancer.

I did sort of know that I did not have these things really , but the possibility added to my constant stress.

I think it would be interesting to try to find out for how many people physical symptoms are a large part of PNI and for how many they were the first really worrying symptoms they had and what they were .

Because I do think that if instead of my GP saying when I saw him over this multitude of diverse physical symptoms...

vaguely that it could be stress

if physical symptoms were recognised as a part of PNI or even the beginning signs of PNI as it seemed to me and my doctor had said something like...


‘your diverse are of a nature ( i.e. headaches , dizziness, mussy head, blurred vision especially) symptoms can be part of the pattern many women experience at first when they have PNI so we can not rule this out and will have to keep an eye on this to see if this is the cause...’

I think it would have clicked - if not straight away but very soon when the symptoms could not be found to have a medical cause and they did not go away

That this was indeed PNI.

and I would have got help sooner and in fact had my GP know that he would have offered me help and treatment that in my case I never actually got at all from my GP I had to pay for private counselling as my PNI was never recognised.

Anyway I think this is a serious point that we should explore.

As if the main first symptoms are in fact physical and their are similarities in the symptoms we experience

then perhaps we should try to let the medical profession ( and those few prenatal 'experts' that exist ) that we have identified a pattern and that these are physical symptoms not only mental and emotional!!

They may not listen - but if it indeed their is enough of a physical pattern to identify

then surely we have to try.

Perhaps we can start with each putting our own patterns?

Mine was :

• from a few days after birth - dally severe headaches - these did not reduce from almost daily for about 6 months and after this I continued to have them periodically until I was recovered
  
• few days to weeks I developed dizziness, mussy head and blurred vision, tiredness even when rested constant colds and sinusitis - lasted about 2 years
  
• later , chest pains , breathlessness, heart 'missing' a beat and racing heart, joint pains
  

I know there were more but I forget them now.

This was in addition to the mental/emotional symptoms that began to creeping gradually at about 6 to 8 months for me to the 'thoughts' and occasional disordered or irrational thinking, crying, panic attacks, feelings of doom, occasional chanting voices , occasional visions, and more

But the emotional mental symptoms definitely either came on later or at first were only occasional and mild - it was the physical stuff that I felt most first and for at least 8 to 12 months bothered me the most.

All the best

Veritee

[cheshire]

I agree - maybe one of those leaflets we're producing should focus on early physical symptoms (although not everyone gets these do they - do some experience different symptoms at beginning of PNI e.g. severe lethargy etc?? I don't know...another leaflet!!)

I had these physical symptoms (muzzy head first - just thought maybe because of diet, but it just got worse):

Headaches
Eye ache (around the socket)
Fuzzy head
Severe breathlessness and panic attacks
Severe Insomnia
Numb patches on arms and legs
Blurred, sort of dizzy vision (didn't read much for while)

Hopefulxx

[Veritee]

The Marce Society

I know thi sis a bit off this topic - but it does relate as it is at the Marce conferences that the direction that reserch will go into PNI is set for the next two years so this could be important for us.

I have been meaning to mention that the Marce Society has a bi-annual conference which is mostly for medical professionals:

Psychiatrists, psychologists, paediatricians, obstetricians, midwives, early childhood nurses, physiotherapists, occupational therapists, community psychiatric nurses, community nurses and health visitors.

But they also aay on their website :

The society also encourages the involvement of consumer and carer (self-help) groups.


I have known representatives from other self help groups go, and have always wanted to attend and take someone else form the forum/website.

I wanted to go to the last one but the problem was partly that I just could not afford it !! They want to encourage self help groups but there is no financial help

'Professionals' expenses for attending will almost certainly in most cases be paid for by their organisation or employers but as a 'self help' group we would have to pay for ourselves

When I wanted to go to the last one I worked out that with the cost of the conference to get in, the accommodation, travel , meals would actually cost at least £400 per person but could have been as much as £600 for me

As I live quite a way from the conference and while I do not need disabled accommodation but I do need ground floor or lifts right to the door, parking right outside and an suite toilet is a necessity so even staying with someone else would not be OK unless they had a guest room with an suite

The supplied accommodation was to be in college digs ( Cambridge that year) at £70 a night this was not suitable for me so I would have had to get a hotel and these were all booked well in advance and were charging much more for those few days .

So I just could not afford it !!

Deborah from PINiSHA who used to be a moderator on this forum went and actually gave a talk

- I think anyone can apply to do a talk and as a self help group if we applied early enough it would nto be that difficult to get in -

but I am really no good at public speaking and just do not feel I could do it - I wish I could but I think it is beyond me. If anyone else has these skills and wants to offer we could work on the talk together - als I have been successful in the past at doign a talk with someone - this works better for me as I need that confidence of not being on my own 'up there'

But even giving a talk Deborah still had to pay her own expenses and so would we .

Anyway the point of this is that I think for the next one in September 2006 I might be able to get funding of about £800 - I could pay myself for my extra needs and so someone else could have £400 to pay for them to attend
The next one is at Keele University, UK , 12-Sep-2006 / 15-Sep-2006 .

So I would like to go and take someone with me , even if we just talk to a few 'experts' it might be money well spent in putting it from the point of view of sufferers and survivors.

But I feel worried asking if anyone would like to go as if lots of you do I could only take one and I would hate for there to be bad feeling if I had to choose-

but also it is possible that no one would want to go as it is a lot to ask and anyone who went would have to know what they would be letting themselves in for and be failty confident they could cope

I am daunted myself, and I do not have PNI , but it daunts me because I am not good in crowd and especially talking to strangers - and important strangers - about issues they may not want to hear.

Even when working as a youth worker, conferences were something I dreaded.
and my disability means that I get tired and in pain, in September I would have had my operation but I have no idea if it is going to help and it can apparently take a year to recover ..

but at the moment I get tired and in pain and can not walk far and this conference is set in venues quite far apart on the college campus so I just do not know how I will cope,

So whoever went with me could not rely on me to be with them all the time - and it would not even be advisable to be together as we could cover the conference better if we both went to different lectures and seminars and took notes, so we made more of it than sticking together .

So any one who came with me would have to feel confident to maybe be staying in a different place from me, and going to seminars where they I may not be and they knew no one and still be able to network and promote what we do......

So anyone going would have to be someone who could cope with the travel, ( or lived near Keele) would not be intimidated by rooms filled with eminent psychiatrists and 'experts' Senior Midwives and CPNs,– as I doubt junior ones would be paid to go - obstetricians etc

would be able to 'network' while there introduce themselves to people and their own point s of view in terms of PNI and from this forum and site’s perspective and some of the issues we have explored like on this thread that research really needs to be done

So this is a lot to ask and I do not know if anyone would be prepared to do it, I am not sure how I would cope either

But rather than just two of us going one solution would be to go as a group and divide the £800 between us and pay for ourselves a bit or fund raise before hand ourselves to go.

If anyone lives fairly near Keele maybe we could pay the conference fees for then for just one or two days - last time you could just go to whatever day you wanted and travel there to meet us for the day? Or they could put others up for a couple of days .

Anyway all I can say is that if anyone is interested or has an interest in going as a group and paying some of the expenses please let me know and if you just want to go with me- but if I have to choose please do not be upset if it is not you.

You have to remember this may not happen anyway as for me it depends on if I can get a grant and how I am after my op

ATB

Veritee

[cheshire]

Hi Veritee,

I would be interested in this, but only if no-one else would like to attend.

I agree Veritee, conferences and networking can be quite daunting and so tiring - but interesting to be in the company of so many experts from one particular field. How this would work with PNI as the context though for me as a sufferer, I don't know...

I have been surprised in the past, in terms of my own job, just what can be achieved long term, simply by turning up to a conference and networking. Speaking opens yet more doors. As you know, I am used to public speaking, but heaven only knows how I would cope with talking about PNI in front of an audience who are not in the same position. ..also, I can easily switch into speaker mode so may not get the emotion across fully .

But I am interested and Iwould be ok with networking as you describe above.

Just thoughts,
Hopefulxx

[yoyo]

going back a few posts ...
Hmmmm - I too started to notice the physical symptoms of PNI first:

Headaches
Dizziness
Muzzy/fuzzy head
Crying all the time for no reason
Lethargy
Numb patches
Panic attacks (never had them in my life - scared me silly at first!)
Sickness
Diahorrea
Then came the more obvious depression - not sure if it was there but just masked by feeling so dreadful or whether feeling so dreadful led to depression & resentment of my baby??

[cheshire]

Hi Veritee

Any news on the Marce conference?
Wouldn't it be great if this site could be represented?
I'd love to go with you, but as I've said before, maybe too close to home as I am a student at Keele..?

Anyway, I'd be really interested to hear what was said. If we're unable to send anyone, do they have conference proceedings that could be linked here?

Thanks, Hopefulx