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Pregnant with existing health issues?

(16 Posts)
bananafish81 Sun 14-Feb-16 16:06:29

Hi ladies

Just wondered if anyone else was pregnant and dealing with existing health issues, and all the fun and games that come with pre existing conditions?

I'm currently 5+6 for my first pregnancy (second cycle of IVF) have chronic pain from a spinal injury, and tbh the hardest thing about pregnancy so far - apart from being terrified of miscarrying, obvs - is the fact that I’m having to be off pretty much all my pain meds, at least for the first trimester. I was on a pretty hefty dose of opioids (tramadol and oxycodone) for the last 14 years, and so being on OTC co-codamol isn’t really touching the sides.

In a double whammy, I also have epilepsy, and my DH is on permanent red alert as the neurologist and obstetric physician (maternal medicine specialist) said the danger zone is the first trimester - the chances of me having a seizure go up by as much as a third, but the Drs don’t want to increase my dose unless / until there is an indication that I need it (i.e. if I have a seizure).

Oh and I also have hypermobility, but that’s small beans in comparison!

Just thought I’d see if anyone else is experiencing management of health issues in pregnancy?

xx

wonkylegs Sun 14-Feb-16 16:18:48

Yes - I have RA and am 28wks tomorrow.
Have done this before with my DS + one late miscarriage so knew it was going to be a struggle. Am missing my RA meds and struggling a bit with steroids and paracetamol especially as the steroids have triggered gestational diabetes which is just one more thing I could do without.
Paracetamol does bugger all. Steroids are helping a bit but not quite enough but trying not to up the dose as that causes other problems. I got a referral for a few weeks of hydrotherapy and that weekly slot in the rehab pool is bliss.
I seem to spend far too much time at the hospital but they are looking after me and despite feeling exhausted, in pain and generally all round shit, baby is at least doing well. Having lots of scans to keep an eye.
Got a date for my section this week though so the countdown to the end has started.

sepa Sun 14-Feb-16 17:38:00

Yes. I have a form of arthritis. I feel bad if I take pain meds (guilt wise) and in pain if I don't. Pretty rocky first trimester but this last trimester my pain has seemed to have got more manageable (but I'm not sure if its because I'm just putting up with it)
I'm hoping to stay off my meds to breast feed until 6 months but I will see how it goes!

Couldn't imagine adding another illness ontop!

TattieHowkerz Sun 14-Feb-16 17:47:22

Yes, I have diabetes and epilepsy and am 12+6 pregnant.

I already have a 4 year old, who is healthy and developing normally. The pregnancy was surprisingly straightforward. I did have a seizure at 25 weeks, after which my meds were put up slightly.

I was on Carbamazepine last time and this time - what are you taking?

I was told that second trimester was riskier for seizures as your blood volume increases so can dilute the effects of medication. I do understand that seizures aren't all that risky for the baby, which is found reassuring.

I hope things go well for you. Are you taking 5mg folic acid?

lilygirl81 Sun 14-Feb-16 17:55:13

I have chronic hip pain, before ttc I was on huge amounts of naproxen, amatriptalyn and tramadol, then moved to morphine, which I'm now almost off. Pain levels thankfully not too bad, but mainly as I've been pretty much bed bound with Hyperemisis. I'm dreading going back to work and having to move about, paracetamol does nothing! I'm only 16 weeks do ages to go too

bananafish81 Sun 14-Feb-16 18:03:34

Thanks ladies, sorry you are all a member of the same club, but nice to meet others nonetheless! Congrats to you all on your pregnancies

I’ve been very lucky to have the means for private medical, and so I’ve had great advice from my consultants for pre TTC planning and now just checked in now we felt (post 3 blood tests, although pre viability scan) that we could say, at least for now, that I’m pregnant

My fertility doc referred me to see a colleague of his who literally wrote the book on prescribing in pregnancy, a consultant obstetric physician who specialises in the management of maternal medical disorders in pregnancy.

Good news is that he will hopefully now be able to treat me on the NHS - as once the GP refers me to the hospital where he is part of the antenatal team (UCH), I will be in the system, and will be referred to his obstetric neurology specialist clinic.

He said tramadol could potentially be reintroduced in a second trimester, but had confirmed what he had said before that nothing except co-codamol was advisable in the first trimester. I’d tapered off everything before my embryo transfer, so thankfully was able to avoid withdrawal (which I’ve had in the past when I came off it too quickly)

wonky hope you’re getting some relief and glad to hear you’ve been so well looked after

sepa interesting - the Dr told me said it wasn’t a problem to take meds while breastfeeding, although different meds may be different. He said many doctors were way too cautious and that in his experience they encouraged women to breastfeed as the amount excreted in breastmilk was so small, particularly compared to what was transmitted across the placenta

Tattie I’m on lamotrigine, and (touch wood) haven’t had a seizure since Nov 14. Yes, I’d read about haemodilution but it was interesting as both the neurologist and obstetric physician said if I was likely to have a seizure after being seizure free for so long, it was likely to be the first trimester. Reassuringly I was told exactly the same, that unless I was in status epilepticus or fell off the top of a tall building, a baby would be unlikely to come to any harm with a seizure

I am indeed on the 5mg folic acid, and have been for about a year now, so fingers crossed that plus the low risk profile of lamotrigine will help to mitigate against neural tube defects etc

As I understand it, as an epileptic (and doubtless with my buggered back - technical term!!) I’m likely to be referred for consultant led antenatal care, is this right? I never looked up what would happen in terms of antenatal because my fertility prognosis was so poor, no one expected my IVF to work!!

Hope you’re all doing OK and having lovely weekends xx

bananafish81 Sun 14-Feb-16 18:06:35

lily sorry posts crossed. Hope you're on the mend from your HG, you poor thing!

At the moment I'm off work on semi bed rest because my spinal injury (smashed up my coccyx / sacrum, coccyx removed and have quite a lot of nerve damage and prominent bone at my sacral stump) causes pain when sitting, and so if I can't use meds to manage the pain to enable me to lead a normal life, I'm having to modulate life to manage the pain - it's so wearing isn't it?

I'm on amitriptyline, the specialist said it was pregnancy safe, and actually my dose has been put up (still a v low dose of 25mg) - not sure how much it actually does, but think it helps me sleep which is something!!

lilygirl81 Sun 14-Feb-16 21:47:18

banana that's interesting about your amatriptalyn, my GP was adamant that I had to be off it before getting pregnant! I'm waiting on a pain clinic appointment, hopefully they can help with some more current knowledge. Bed rest is awful isn't it, I'm running out of Netflix to watch!

I used to use a TENS machine on bad days, but I've been told not to as it can start contractions, anyone else heard that?

bananafish81 Sun 14-Feb-16 23:06:10

lily the maternal medicine consultant said pretty much exactly that. He said well meaning GPs would tell women to come off all sorts of medication where jn fact although the official guidance is 'not recommended in pregnancy' that was based purely in the fact that there are no clinical trials for medication in pregnant women - not because they were actually harmful. Or certainly in other cases that the benefits massively outweighed any minor potential risks.

He said absolutely under no circumstances was I to let a GP try to talk me out of coming off my epilepsy meds 'because of the risk of birth defects' as he said the risk of a seizure to the health of the mother was far more important. So I would def see if you can get some more specialist advice xx

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sepa Mon 15-Feb-16 18:39:46

The meds I take were safe in pregnancy but advised not to breastfeed on them. I came off them regardless as I wasn't happy taking them.
Luckily from 28 weeks the pain hasn't been too bad. It has seemed to make my arthritis more how it should be (as in it comes and goes) rather than lasting pain.

What medications are you taking?
I agree that you need to look after yourself before the baby. Coming off my medication would never cause me to have a seizure so this is completely different to someone with epilepsy!

Can't you get the prescribed cocodamol? Which is a dose stronger than OTC? I didn't find it really worked for me but it may just take the edge off enough for you

bananafish81 Mon 15-Feb-16 22:40:40

Sepa so glad things seem to have improved for you. All the specialists have said that very often the hormones of pregnancy improve pain - great to hear that you've found things haven't been as bad as you expected. Hope that continues for you!

I was on a hefty dose of tramadol and oxycodone for pain (plus amitriptyline - the dosage for which has been upped), and my epilepsy medication. Seeing the ob/gyn for my viability scan next week so will ask about prescription Co codamol, now it's becoming clear that the OTC is really not even touching the sides. But given the epilepsy medication can have an impact on a developing embryo, I would rather just try and suck it up and not blame myself further down the line if something were to happen. Will report back!

Xx

KayTee87 Tue 16-Feb-16 19:34:53

I really have nothing useful to add except congratulations on your pregnancy and I hope it is happy and healthy for you. I feel bad about how much I moaned during my terrible morning sickness phase now and took half a day off yesterday because I was having dizzy episodes, total wimp blush

sepa Tue 16-Feb-16 19:37:25

Maybe try tiger balm? You can buy it from boots (it's a bit like deep heat) and put that on where it hurts. Both me and my mum have found it can sometimes help

bananafish81 Wed 17-Feb-16 22:34:03

Thanks kaytee hope you’re feeling better!

sepa I’ll give it a go! It’s a very localised pain around the bone so it’s not so much a muscular thing, but anything that might calm or distract nerves can only be a good thing smile

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