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brain haemhorage following orgasm when 26 weeks pregnant

(22 Posts)
Noodlepip Fri 03-May-13 14:08:59

I had a massive stroke when i was 26 weeks pregnant, extremely healthy with a lowish blood pressure throughout the pregnancy. in fact the day of the stroke it was 116/65 I was walking beyween 5 and 12 miles per day. No protein in urine. def not pre-eclampsia.. A very normal saturday. had normal saturday morning.... A bit of 'how's your father with husband and, excuse the crudeness but I came ( twice apparently - but i dont remember that bit! more's the pity as it must have been good to nearly kill me. but i do remember literally the moment I 'came' getting a searing pain in my head (similar to 'brain-freeze' when you drink an icy drink on a hot day.... the pain wouldn't stop and i knew that something very bad was happening. I had no oother stroke symptoms, speech was finne. All I had was intensepain. I was rushed to hospital where I promptly had another stroke in the scanner. got transfered to a a specialist hospital where I remained in a coma until I had brain surgery as I wasn't improving .. about a week later I started to respond and after a few more weeks went into rehab. where i stayed until I was 38 weeks pregnant and had my daughter by c-section. luckily she was ok - perfect in fact. No brain damage and now i'm attempting to rebuild a shattered life..... I t all seemed so unfair. I had infertility for 8 years, miscarriage after miscarriage, including ectopic . I feel so blessed to have our daughter but overwhelmingly sad that due to the severe disabilities that remain, namely unable to walk, or use my left arm or hand at al, none of the dreams of motherhood have happened. I never even bought a pram... when I should have been doing that, I was being measured up for a specialist wheelchair.... Now that will go down in my memory as one of the most heartbreaking moments of my life... even the OT was in tears.

StealthOfficialCrispTester Fri 03-May-13 14:14:23

I'm so sorry. Congratukations on your dd though. How is your life now? What's the long term prognosis? Your dreams of motherhood may have changed but you are stil a mother. Are you being supported by your health visitor?

MisForMumNotMaid Fri 03-May-13 14:22:02

How sad and frustrating and disappointing and exhausting for you.

Congratulations on your DD.

Have you got a pram now?

I'm always up for a bit of pram porn. I've had masses of them with my three.

I just did a google looking for
adjustments to prams for wheelchair users

Have you got a good health visitor to help you through this major adjustment period?

Mama1980 Fri 03-May-13 14:34:13

Hi noodle, I'm sorry you're going through so much. Congratulations on your dd though thanks have you any family support?
My story is slightly different my placenta ruptured at 24 weeks and they had to perform a emergency hysterectomy to save my life I've been left paralysed in my left leg and am using a wheelchair at the moment. We've been home nearly 4 weeks (ds is doing very well I also have two other children) it's a huge adjustment but I get through to by just focusing on what I can do iykwim?
Have you tried having dd in a sling? I have not got a pram at all but by wearing the sling I can 'carry' him.

Noodlepip Fri 03-May-13 14:34:35

LI have to tell myself just how lucky I am to have her with me ... Apparently pregnancy related stroke is not uncommonbut usually happens during childbirth or just after. smine would have probably happened during labor resulting in dead mummy and dead baby... So I am grateful but also devastated. This is my only shot at motherhood and every day my heart feels like its breaking a little bit more.There's this evil voice in my head 9not literally) saying to me "this is what you would if you would do if you were the old you, especially when she's crying and all i want to do is pick her up and cuddle her. Its a difficult situation.... Still no sign of walking, no movement in arm or hand... we've sold everything we own to pay for additional physio.my husband was made redundant the week after the stroke,I was told my 15 year old cat had died the day before I was discharged home. i have written a card to cover every Christmas and birthday until my baby is 21. even a card for her edding day and first baby as I'm now at high risk for more strokes... I'm scared that I will break my daughter's heart by dying whist she is a child. I am a shadow of my former selfand I fight every day to not be bitter. I tell myself to just keep breathing, every day

MisForMumNotMaid Fri 03-May-13 14:46:32

You have every right to feel what ever range of emotions you do. You've been through an ordeal and have a lot of adjusting to do and no doubt no one can give you straight answers about the future.

Have you been offered counselling to help you work it all through?

Regarding the physio and having to pay, are you in the UK under NHS? If so what is your GP doing to help, how many sessions are you able to get via them?

Its completely not the same thing but I have an Autistic son and I'm shocked/ amazed how with a lot of fighting I'm able to get more support for him. But I have to fight every step of the way. I think that's the thing with getting funding for things within trust budgets.

Have you been advised on disabled facility type grants and contacted your council about house adjustments to make things more accessible?

Noodlepip Fri 03-May-13 15:13:29

I am extremely lucky as I have excellent support from the community neuro rehab team. my husband has been employed as my personal assistant under the direct payments scheme as an exceptional circumstance case... and he is great. I have tried to give him his life back. we're too young ( LOL late 30's !) for our lives to be like this so I thought he would be better off with a new family. he wont go. For months I was so angry with him. he knew that I wouldn't want to be like this. we had discussed it on many occassions. I felt he should have had them save the baby and let me go.but his criteria for a positive outcome was to be able to talk to his best friend again... but now he has more than he bargained or. i feel he was pushed into this as there was talk of putting me into a nursing home (from the social worker, not from anyone else)and them putting my baby into care... It was a living hell. and for 8 weeks I had difficulty beleiving that I hadn't actually died and was in hell or I was simply asleep and dreaming.. that's how surreal the hospital stay wasso my head was all over the place and still has its momentsnamely the severe PTSD from the hospital admission itself... the ward was understaffed and it's staff were over worked, burnt out, cruel and unkind. I was routinely, at 37 weeks pregnant made to wait for 3 hours to have a wee. so desperate, one night and sick of not having the buzzer responded to. that i started to do SOS signals throughthe ward window ( next to my bed) with the torch on my phonein the end i had to phone the hospital switchboard and get put through to the nurses' station to get help. god only kmows what would have happened if i'd gone into labor.... fortunately the ward where I had the baby was amazing and the fantastic midwifewho had been involved inmaking preparations for my stay on their high dependency ward. ensured that i had gas and air piped in for the duration.... a god send as up until that point all id had in way of pain releif for 3 months was th odd paracetamol... I slept almost solidly for 5 days and 5 nights after the birth. waking only to feed her .. if the midwives could help position her correctly... who'd have thought breast feeding is very much a 2 handed operation... the sling i used freaked the heck out of the baby...
Thanks for the pram/wheelchair suggestion ... I still harbour a fantasy of buyinga pushchair and using it as my walking aidso I cant let myself push a pram until I'm walking ( which I appreciate sounds stupid but i have to beleive i'll walk whilst she's a baby/toddler) I've just had masssive amounts of botox treatment in my leg and bum to try and loosen my hamstrings that are like metal rods and stop me from putting my left heal to the floor. in a month I'll really start to see the benefits... finger's crossed.

Snog Fri 03-May-13 15:26:42

How very shocking.
Rooting for you Noodlepip

Noodlepip Fri 03-May-13 15:52:49

my new GP is great and has been kicking consultant's butts to get answers ... but we're still a little way from those.i'm getting the maximum input I can access through NHS. no doubt if I was 86 I would be able to tap into some more services but I am too young and its depressing at the day hospital ... I always end up making people cry .. I dont mean to but they ask what happened...I keep lots back, they always ask about kids and then i watch the penny drop with them... then they ask loads of questions ... then they cry. especially the men....

MisForMumNotMaid Fri 03-May-13 16:22:27

Gp sounds good.

You sound amazingly strong.

I used to have a Guesline pushchair/ pram, my first pram with my first. It was unbelievably heavy I can imagine something like that doubling as a walking aid.

Things to aim for and dreams are our motivation in life aren't they? It doesn't sound silly at all to have a desire that you'll be on your feet in the future especially as you're far from exhausting medical avenues.

MildDrPepperAddiction Fri 03-May-13 16:44:26

Your story brought a tear to my eye. Your DD is lucky to have such a strong mum. You will come through this.

ohmeohmyforgotlogin Fri 03-May-13 19:13:54

noodle, what an awful lot to deal with. And you can probably do without other people's tears. Are you getting help specifically for your PTSD? That alone will take a toll on your health. And your fears will grind you down. Best wishes on this journey that is so unfair and tough.

BlackholesAndRevelations Fri 03-May-13 19:25:09

No words but as much virtual support as I can muster. I can't even begin to imagine the devastation sad flowers

queenofthepirates Fri 03-May-13 19:38:34

My poor darling, you really have been in the wars.

I too am terrified I won't be there for my daughter's life to be. I try to fill her with as much of my love as possible so she'll have reserves if anything should happen to me. I try to make every day count and never take anything for granted.

You will get through this and you will be the mum you want to be. I for one will be rooting for you xx

narmada Fri 03-May-13 21:58:55

What an awful thing to happen to you.
To be honest I imagine you are quite depressed after your recent experiences, followed by childbirth and its associated hormonal ravages. Feeling loved ones would be better off without you is a classic depression thing but a sentiment loved ones almost never share. Hope you are getting psychological support along with the physical stuff.

amazingface Fri 03-May-13 22:00:08

So shocked to hear your story. flowers

Please keep posting. I am amazed that you have managed to breastfeed your daughter in your situation. Do you know how incredible that is, and what a huge thing you have done for her?

fanjodisfunction Fri 03-May-13 22:03:10

noodlepip your story is so full of courage, your such a great mum already, you've put your DC before yourself.

I saw the story of the artist who only has legs, her son is called Paris. He adapted to her, they found their own way to be a mother and child, I'm sure you and your DC will be the same.

And thank you for posting your story, I really hope your recovery is fast and you get to push that pram.

narmada Fri 03-May-13 22:05:24

Are you breastfeeding? Bloody well done to you, after all the trauma you've bern through.

toni1bump Mon 06-May-13 10:03:59

Such an inspirational story... Heart goes out to you and your family xxx

pumpkinsweetie Mon 06-May-13 10:10:43

You are an inspiration thanks
You sound like an amazing lady smile
Congratulations on your new dd, hope you are getting all the support you need xx

mikkii Mon 06-May-13 10:20:26

Noodle pip, I was also thinking of the artist mentioned by fanjodysfunction above, perhaps you could find an article on how she has managed to how you what is possible.

My mum is disabled by arthritis and she normally uses sticks, but if she pushes a buggy then this works instead of her sticks, what I'm trying to say is your thoughts of a pram as a walking aid are eminently do-able.

Please think of the fantastic things you are already doing, and remember, your DC won't know what you used to be able to do, only all the things you can do. You will find ways of adapting that work for the two of you, you may find your DC starts to "help" by moving or not moving as you need.

Congratulations on all you have achieved, you are amazing.

ChicaT Thu 09-May-13 13:24:37

Hi NoodlePip, Stay strong and keep the belief that you will improve - the brain is an amazing organ with a still un-recognized capacity for self-healing. I had a stroke 7 years ago at the age of 29 and was told that after 2 years there would be no more improvement. Bulls***! I have continued to improve every year, and while after 2 years I tried to accept that life would stay as it was, part of me refused to believe it. I still feel the effects, but I am so much better now than I was. You're young, things WILL improve. I too had/have amazing support from my husband - some men step up, and they want to do it xx

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