The PNI Pattern - is there one?

[Veritee]

Dear All

Over the 10 years of being a APNI volunteer and supporting women on this site and in other ways - it has began to seem to me that for many women PNI follows a similar pattern.

Of course it is not the same for every women - but there seems to me to be enough of a similarity for me to be able to write this pattern down.

This is only my opinion and I am not qualified in any way except by my experience of listening to others

and this probably does not apply at all to those who have P Psychosis ( although while this is supposed to happen withing days or weeks of the birth - quite a few I have talked to who were diagnosed with this did not get the psychotic symptoms until they had been ill with PNI for some months)

However here is a common pattern I believe I have noticed for PNI
_______________________________________

• knowing something is quite wrong after the baby but not knowing what?
  
  
• Desperately fighting this feeling that you are unwell emotionally/physically/mentally
  
  
• getting increasingly severe symptoms over weeks or months until you can not avoid knowing something is wrong :see www.pni.org.uk/index.htm for a list of common symptoms,( my first ones were headaches, dizziness, blurred vision)
  
  
• accepting that something is wrong - perhaps going to your doctor and being diagnosed with PNI but still trying to fight it and expecting to be better within days or weeks-
  Some who have good periods at this stage so much want to be well they assume they are and stop any medication and/or counseling, only to find they then hit rock bottom
  
• finding that the prescribed medication or any alternative treatment - while it helps to deaden or cope with your symptoms it does not actually make you better! Being disappointed that this is the case.
  
  
• For some the symptoms escalate and become so acute you may reach crisis and feel that you can not go on - acute stage. While for most this is a time of being very anxious, others having very worrying or bazaar thoughts and/or panic attack - Some women get very acute symptoms at this stage that can be psychotic in nature ie hearing things, hallucinations visions , feelings that you are haunted or possessed, a feeling of dread or a feelign that you do not want to be near your children.
  
  
• begin to fully accept your illness and start ensuring you have the help you need, that your family/partner understand how ill you actually are and that you need considerable help just as you would with a broken leg etc.
  
  Take any medication, use any counseling and support visits and concentrate on getting well above all else
  
  
• Start to find that you do not feel so constantly and acutely ill, but your symptoms come and go in waves for some around their menstrual cycle - I call this 'the ups and the downs' - again some on an 'up' period will stop any medication only to tumble - always continue medication for at least 6 months
  
  
• At first these ups and downs can happen every hour of the day, but eventually the ups last a week and the downs the same and then months so that when you get a down you think your PNI has come back - but it has not - it is the same PNI but the downs are so rare and you are nearly better - but stress can bring on the downs again big time, so now you really do have to care for yourself!!
  
  
• gradually with the help of support and treatment you start to recover over a period of months and for some years ( although it is commonly believed that all women recover from PNI with time and what is needed is medication and support to get your through and relieve symptoms) - it is at this stage that many women find that resuming employment is helpful for them or for others to resume their hobbies of even try for another baby!
  
  
• PNI symptoms all but go away except just before a period or at times of acute stress
  
  
• full recovery - yippy!!!
  
  
• 
  

This is only my opinion from what I have observed.

I would be interested if others want to list the pattern of their illness or if their PNI experience differed from this

All the best

Veritee

[cheshire]

Veritee, my version (but please bear in mind that I cannot remember everything and often it is replies on this forum that remind me of what happened etc.). I have taken your list and just added bits if that's ok:

knowing something is quite wrong after the baby but not knowing what?

Not the next day (that I can remember) but within a couple of weeks, most noticeably at 6 weeks

Desperately fighting this feeling that you are unwell emotionally/physically/mentally -

Yes 6 weekish point symtoms began to take over my life and happiness - I attributed it to other things to start with but soon started to realise that I might not be in control

getting increasingly severe symptoms over weeks or months until you can not avoid knowing something is wrong :see www.pni.org.uk/index.htm for a list of common symptoms

Dizziness and fuzziness first (approx 6 weeks) , swallowing problem around 12 weeks Can't remember when breathing problems started - I think probably earlier @ 4-6 weeks
The first list of symptoms I read was on the APNI web site and I cried

accepting that something is wrong - perhaps going to your doctor and being diagnosed with PNI but still trying to fight it and expecting to be better within days or weeks

Repeatedly going to Dr. asked if I thought I had PNI and I said no (because I thought it was something else) they knew symptoms were severe so started screenings

finding that the prescribed medication or any alternative treatment - while it helps to deaden or cope with your symptoms it does not actually make you better! Being disappointed that this is the case.

Yes, particularly regarding breathing at times - went to hospital for tests etc. There were several occasions when I could not remedy the breathing NO MATTER WHAT I DID and at worst the symptoms kept me up all night which led to panic attacks during the day. I could not function or leave the house. Felt desperate and self harmed once or twice. Screamed alot and used various helplines out of desperation.

The symptoms escalate and become so acute you reach crisis and feel that you can not go on - acute stage. While for most this is a time of being very anxious, having very worrying or bazaar thoughts and panic attack - Some women get very acute symptoms at this stage that can be psychotic in nature ie hearing things, hallucinations visions , feelings that you are haunted or possessed

I hallucinated a few times (3) around this stage - mainly figures or creatures which I thought repesented death near the crib. I once heard voices (a voice actually) which really frightened me

begin to fully accept your illness and start ensuring you have the help you need, that your family/partner understand how ill you actually are and that you need considerable help just as you would with a broken leg etc. Take any medication, use any counselling and support visits and concentrate on getting well above all else

Late diagnosis after some personal research and visit to the GP. Counselling starts and start use of forum. Start to feel better. Can't believe how so many of the postings sound so close to my own experiences of PNI. In a way feel relieved and able to accept it a bit more. Share with friends and family.

start to find that you do not feel so constantly and acutely ill, but your symptoms come and go in waves for some around their menstrual cycle - I call this 'the ups and the downs'

Yes, linked to menstrual cycle but also prompted by serious lack of sleep and any new stressful conditions

gradually with the help of support and treatment you start to recover over a period of months and for some years ( although it is commonly beleved that all women recover from PNI with time and what is needed is medication and support to get your through and relieve symptoms) - it is at this stage that many women find that resuming employment is helpful for them or for others to resume their hobbies of even try for another baby!

By this point have accepted it takes time. Less phased by re-occurence of symptoms. Don't think I'm at this point however. Certainly don't want another baby and have taken permanent measures to prevent this. Looking forward to working part time.

PNI symptoms all but go away except just before a period or at times of acute stress

full recovery - yippy!!!

Can't imagine this, but am looking forward to it ie. 'hopeful'!

[collette]

hello

i would agree that my journey through the illness followed the general pattern you suggested veritee.

i particularly remember a feeling of shell shock to my body and mind after giving birth and then feeling ok for a few weeks maybe 6 but then feeling terrible.

i also remember thinking early on that our baby was sent by the devil to wreck our lives and that every time he was crying or i couldn't deal with him i was very angry at God for not fixing it for me. it felt like a constant test.

altho that is probably peculiar to me because I am a Christian so was bound to be a bit angry towards God thro my illness.


love collette xxxx

[cheshire]

Hello again,

I ought to add that when I stated 'Certainly don't want another baby and have taken permanent measures to prevent this' this was not only due to PNI. We have 2 children now and my husband had been very ill and still has to have an operation.
My son was worth PNI. He is beautiful and loving. Don't let PNI totally put you off having more children...

[AUSSIE GIRL]

Thanks for this information this makes so much sense to me.
I am going to show my husband as i believe i may be in the up and down stage. This helps me see the light at the end of tunnel.
this is the first time i have seen the illness like this.
One of the stages i have noticed that made me think i was on the road to recovery was the distraction phase, where by i can do things like crosswords and crafty things, being able to concentrate on something has mean't a progress point for me. This came about just before the up and down stage of recovery.
Aussie Girl Tracey

[sadmum39]

Dear Veritee
I ahve followed this exactly. I am at point 6 (crisis) - maybe 7 (begin to accept help) and beginning to believe I can get to point 8 eventually.

I am so worried though as I really cant see an end
love SMxx

[caterina]

Hi Veritee
Scarily accurate this!
I think I'm 2 steps away from the complete recovery but I'm looking forward to that point! x

[Scarlet]

Veritee, this is an excellent insight and I believe spot on with what I've been going through, except my PNI started during pregnancy.

I believe I am somewhere between paragraph 8 or 9 now. Thank you for posting this.

start to find that you do not feel so constantly and acutely ill, but your symptoms come and go in waves for some around their menstrual cycle - I call this 'the ups and the downs'


At first these ups and downs can happen every hour of the day, but eventually the ups last a week and the downs the same and then months so that when you get a down you think your PNI has come back - but it has not - it is the same PNI but the downs are so rare and you are nearly better - but stress can bring on the downs again big time, so now you really do have to care for yourself!!

[Scarlet]

just to add.

I often wonder whether PNI recovery is much to do with acceptance and being comfortable with your life situation and your new child and that each of us with PNI has to go through these/or similar stages to get there ~ perhaps that's why for some PNI may heal quicker than for others, in that they feel comfortable quicker .....

Sorry just waffling and putting my thoughts down, hope you know what I mean.

[clairecharlie]

Hi Veritee

I feel my pni is very much as you describe.......................... Thankfully i think im now at point 9/10 but its not been easy getting here thats for sure!!!!!!

I think it's quite helpful seeing it written down like that and very encouraginc as it looks like i'm nearly there!!!!!

Thanks V

Love Claire x x x x

[Scarlet]

Claire,
glad you are nearly there....it's been a long bloody ride though. I never thought I would laugh again in those early days..

Sadmum,
there will be an end, in fact you are more than half way there at no 7.

Caterina,

Scarily accurate this!
I think I'm 2 steps away from the complete recovery but I'm looking forward to that point! x

me too, it can't come soon enough for me...

[winegirl]

This is a fab thread to kind of track your illness. I think I am about point 8/9 and actually really happy about that! It's great to see that it truly does get better.

Heres to us all getting past that last point really soon!

Winegirl x

[gizmoracer]

Wow thats so acurate for me.

I am at the stage where I feel fine for about a week at a time but also still suffering for a week inbetween them. This thread has helped, knowing that I have followed it excatly so far, has given me an idea of what is to come. I have only just started to get these 'blips' and wasn't dealing with them all that well, but know I can see where it fits in.

Thanks Veritee

[sadmum39]

Hi Scarlet - thanks for that perspective - more than half way there! How lovely
Cheers
love SMxx

[Scarlet]

Winegirl,
I love this thread, in fact I printed it off for my psychiatrist today so he can use it for other mums...

gizmoracer,
Well I'm not so worried about the blips after reading this, and kind of like expect them...and maybe when you expect them, they don't happen...

Sadgirl,