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My APS caused multiple TIAs which resulted in me being wrongly diagnosed with postnatal psychosis.

Eliza_E profile image
3 Replies

OK – here’s the quick version:

Found out I have APS after a stroke when my son was barely 7 weeks old. Had been misdirected to a mental health facility where they treated me the dangerous atypical antipsychotic olanzpine. The Committee on Safety Of Medicines issued a statement in 2005 which says

‘…Prescribers [of olanzapine] should consider carefully the risk of cerebrovascular events before treating any patient with a previous history of stroke or transient ischaemic attack. Consideration should also be given to other risk factors for cerebrovascular disease including hypertension, diabetes, current smoking and atrial fibrillation...’

Had had at least 4 TIAas before they prescribed olanzapine as well as hypertension and headache. Also know now that I have a hole in my heart (‘atrail fibrillation’); however, have never smoked and do not have diabetes. The reason doctors have to be careful prescribing olanzapine to those of us with these symptoms is because olanzapine can cause strokes in such patients.

Obvs. APS can cause stroke as well. Should probably add here and now that all this is subject of ongoing complaint and investigation.

In a little more detail:

Found out I was pregnant for the first time in April 2009. Sadly, this miscarried at 12 ½ weeks. Lost the second a couple of months afterwards at 8 weeks. The frankly unsympathetic response at the EPU our local hospital was ‘oh well, bad luck, it happens, just try again when you’re ready.’ Luckily conception was not an issue for us and I was pregnant again by the following February. Managed through goddammit-belligerence to get a referral to a fantastic obs-gyn consultant at a different hospital and he prescribed low dose aspirin and pregnyl (hCg) injections although no blood tests were done. A few minor issues aside – cervical ectropians (not actually the Dr Who villains they sound as if they are) and some minor blood spotting, we sailed through until about 32 weeks when I developed chronically itchy skin.

This turned out to be obstetric choleostasis which is a liver malfunction caused by pregnancy hormones which is treated with ursodeoxycholic acid (sp?) and Vitamin K, ironically enough, given how careful with Vit K one has to be now.

Cholestatic pregnancies are induced so I went in at 37.5 week on Mon 20 Sept, having been told to stop the aspirin at the end of 36 weeks. I had felt a reduction in movement over the preceding weekend and knew this could indicate a problem so was worried but had also read that babies have far les room to move towards the end so was trying not to worry – in any case, we were due at the hosp on the Monday so decided to wait.

After we had been hooked to a monitor, a midwife came in to check the readout and said ‘I don’t like the look of that.’ Next thing I knew I was surrounded by people stripping off my bottom half (not as much fun as it sounds, asking me to sign things and sticking needles in my hand) and explaining I was being whisked in for an emergency C-section. Tried to put the uncensored images of a C-section filmed from the business end I had seen in the NHS ‘From bump to breastfeeding’ DVD out of my mind.

One spinal block later, gripping my partner’s hand, heard two things : a) surgeon saying ‘not breathing’, and b) it’s a boy.

Then a few cries a minute or two later. They had resuscitated him (baby, not partner!).

On recovery ward a couple of hours later, was temporarily left completely on my own. Breastfeeding midwife had disappeared, partner gone for much-needed wee and no-one else in the room. Had been feeling pretty weak and the arm (left) I had my son in was feeling very weak. Whilst I was on my own, it completely collapsed. Yann basically folded in two, went blue, had an apnoea and was rushed to SCBU (Special Care Baby Unit). He was discharged 8 days later.

I started almost immediately having flashing lights, severe headache and very high blood pressure for which I was given labetalol. They let me home after 5 days and we came back in to pick up our son to go home on the 8th day. My entire thought process had been with and about our little boy and I did not begin to query the cause of what had happened to me until I got home.

Duly, made an appointment to see the GP to explain the clinical features I had experienced and also the fact that I was incredibly weak on my left side, still could not hold Yann that side. I know now she failed to note anything I said about this but simply subsumed it all into the phrase ‘long chat with Liz,’ and her thought that I was ‘high risk of PND.’

A couple of weeks later, after a few nights of strong heart palpitations, I had some peculiar visual disturbances; it felt on two separate occasions as if my eyes had gone in totally different directions, like cartoon cat Tom when he’s been hit over the head by Jerry.

Reporting this to the GP led to them referring me to perinatal mental health facility (which is where things started to go stratospherically and catastrophically wrong in terms of diagnosis and treatment). Standing in the porch waiting to go home after the initial interview, my left leg completely collapsed underneath me.

Because I felt ‘in a fog’ the psychiatrist decided I had postnatal psychosis and prescribed the atypical antipsychotic olanzapine. Did not feel any better or indeed different, only worse because of being watched 24/7 like some kind of criminal and having been refused an explanation of what they thought they were treating me for and with. Consequently conducted all my research afterwards. The night before I had the major stroke, insisting it was working, despite what I thought and felt, they increased the dosage of olanzapine and 24hrs later I suffered the stroke.

What I remember is someone poking me on my left arm and saying ‘wake up, wake up’. Then absolutely nothing until I woke up in an ambulance and asked what was going on. I do remember asking them in the ambulance to call my partner and my mother and where Yann was. I have seen some of the notes and know now that an initial investigation was conducted in the MH hospital and I was completely unable to move my left side.

Got to the General Infirmary late that night and had a CT scan which showed I had suffered a stroke. An MRI later confirmed right middle cerebral infarct. Stayed in considerable shock about this for about a week. Various tests later confirmed APS, but I do remember a lot of pointed non-verbal communication amongst the consultancy team on their ward rounds when I asked about that ‘bloody olanzapine’. Now I know why. Due to see my fab consultant in the LGI for final outpatient check next month, and will ask him about this then. In the meantime my ex-GP and the MH people are desperately trying to find out if they are covered by the Medical Practitioners’ Society. If only they’d known about APS!!! – since the number of TIAs I had was second clear suggestion of it (after 2 miscarriages).

INR usually stable now around 2.5, usually take 12-13mg of warfrain daily. My son thriving. Prob won’t be able to have any more kids but little Yann’s worth about three of anyone else anyway.

One question I am left with, is anything known about the links between hormones and APS? Since mine has surfaced most strongly at hormonal times. In which case, what can I expect when I become menopausal?

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Eliza_E
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hazel595 profile image
hazel595

Hi Eliza...omg what a terrible time you have had.....but you have come through it and have a lovely little treasured baby son, Yann.

There are links with the hormonal cycle and APS/Hughes and a number of APS patients post on the hughes support forum feel much worse every month for a couple of days before a cycle when their APS symptoms become worse which might mean that our anticardiolipin levels rise although that is only my own personal thought and opinion.

lupus-support.org.uk/Crit.htm

"All rheumatic diseases are clinically influenced by the menstrual cycle, and none more so than lupus. Some patients are almost immobilised during the 2 to 3 days preceding menstruation. It is my practice in some cases, to alter the dose of medication during this time. Although difficult to quantify, I believe that significant pre-menstrual disease flare is sufficiently prominent in lupus to be included in this "alternative criteria" list."

Professor Hughes wrote this in his Alternative Criteria for lupus but I do think that it applies to Hughes Syndrome as well as lots of other autoimmune diseases as well.

He advised not to take the eostrogen pill and not to have hormonal replacement.......

I never took the pill when I was child bearing age and opted for the coil and by the time I was 43 my menstrual cycle had completely stopped due to low dose chemotherapy treatment I'd been given for lupus. I was also lucky enough not to notice Menopausal symptoms maybe because my other symptoms overshadowed them.

I wouldn't worry too much about the future when you are in menopause because I am sure there will of been more research completed by that time which will mean you will have more answers.

Eliza_E profile image
Eliza_E

Dear Hazel

Thanks very much for your kind and informative response; I promise I won't worry about what happens when I'm menopausal until I am (hopefully not for a good whiole yet anyway...)

Meanrt to add to my original blog -

Started with first APS symptoms at age of 13 with shocking migraine and split vision; like looking at the world through a broken pane of glass...used to throw up with them, too - tended to last abnout 24 hours then go. My wretched mother used to say, 'oh, they're just bilious attacks' and discount the as anything to worry about. Although I have never smoked, she has done since the age of 15 - and for anyone who wondered if she might have given up during pregnancy, you have clearly never met the miracle of selfishnes that is my mother! Migraines had more or less gone by age 17 but was left with iregular menstrual cycle, emotional upheaval and heavy bleeding every month until started on micronor (minipill, progesterone only, which you take every day and which settled things down) at the relatively late age of 35. Still had migraine on and off through 20s and 30s, very rare by then, usually after good coffee so thought it was due to caffeine. Did have one shockingly bad one when pregnant with my son during health visitor visit who told me it was nothing to worry about. Shows what a fat lot she knows.

SharontheSheep profile image
SharontheSheep

Hi Eliza

God save us from that species that is known as the bad health visitor. I am sure there are some very good Health Visitors out there but I have not experienced one myself either.

APS and hormones - I have to say mine are most definately connected ...Oops, how rude, I should have said hello first. Hello me Sharon, have story as does us all on here and everyone you read seems worse than the last, hope the support from here will help the future path be one that is less troubled.

Back to hormones....weirdly enough when I have a good phase it's not just all my symptoms that improve (migraines, balance probs, foggy brains, joint pains etc) but my periods stop. Last year I had 5 periods this year I have missed 2 already but my hormone levels when checked are perfectly normal and do not indicate menopause or premenopause. So I know there is a connection and when I am having periods the premenstral stage is horrendous - I can barely walk some days and it is the same at ovulation. All very wierd.

I had 13 preganancies (only 2 resulted in living children) and I had progesterone therapy for my preganancies so that must have some kind of link in to (oh I had heparin injections for the last one as well)

Take care now

Love Sharon

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