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Hello from Debbie G


debbieg
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Had my SAH on 29th January 2012. Doing nothing in particular but sudden pain in neck and all around my head beyond what I could put up with. Was sick several times and ended up by ambulance in A&E. Transferred after a day to Hurstwood Park Neurological Hospital (who were great). Nothing was found despite 2 CTs, MRI and 2 Angios. Only the lumbar puncture was positive. I had awful experience at the local hospital who treated me as someone who had just had a bad migraine. No pain relief for 8 hours. After the lumbar puncture it all changed and was sent within a couple of hours to Hurstwood Park. It all got very scarey then when brain haemorrhage is mentioned. After two weeks in there I got the all clear with a final angio and sent home. I don't know if anyone else feels a bit cut adrift when they leave hospital. There was nothing said about the future apart from it should never happen again. I have a follow up in 5 months time. 5 weeks on I have a woosey feeling all the time a bit like being on a boat and if I try to do anything much apart from laying down the headaches kick in. I guess this will continue for some time, it just gets frustrating being home but not being able to do anything. I get the odd panicky feeling that it all will happen again especially as I don't know where the bleed came from in the first place and why. I am so glad to have survived as reading more info on SAH you are lucky to come through it. I hope the side effects subside soon but reading other people's stories, who can tell. Just glad to find a site where others may have had the same experience as me as I was the only female SAH patient in my neurological unit when I was there so I had noone to compare symtoms with. I have kept in touch with a few patients from my stay in hospital and we keep texting each other about our ups and downs and that has helped a lot. Just feel a bit useless and stuck at home at the moment.

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Hi Debbie.

The information you were supplied with, upon discharge, is statistically correct.

It is very unlikely that you have another bleed.

This information will not make those feelings of dread, concerning a re- bleed, go away.

We all, on this site, feel that the pain will come again, and no amount of medical reassurance can make that feeling go away.

All our side effects subside in different ways. The sea-sickness has never left me, even seven years on from my SAH, it still invades my life every day.

The other side effects, like depression, headaches,fatigue, over sensitive emotions and lack of confidence have all gradually improved.

The reason you received no pastoral or emotional advice from your medical team is, that they have no idea of the long term legacy that follows the trauma of a brain bleed.

The neuro- teams at all our wonderful hospitals in the UK are expert in fixing the physical body, but clueless, when it comes to rehabilitation.

There has been a study conducted, and responded to, by survivors on this site that may improve the understanding of the medical profession,

if they take on board all the responses.

It is a good thing to keep in touch with your fellow ward -mates, just as it is a good thing to correspond with all your virtual ward-mates upon this site.

Our experiences are vastly different but, at the same, very similar.

If you have managed to emerge from your event without too much physical damage, you are very lucky.

Some of us cannot see properly, some cannot walk some are so tired that normal life is very difficult.

Welcome to the site Debbie, I hope you continue to gain strength in your recovery.

You have found the right place for advice and support.

All the best,

Bill B.

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Hi Debbie welcome to btg. Everything you are experiencing is completely normal. Try not to worry to much it makes all the symptoms worse. Drink plenty of water and rest when you need to. Anything you want to know I am sure one of us will have the answer. Jess.xxx

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I agree with all that Bill and Jess have said......try not to be down.....keep happy and smile ..we have all been through a similar

illness so at least we understand...Cheer up and live life to the full

Keep Happy and it is early days for you yet but time is a great healer

Try singing also it helps me but drives family up the wall..lol

Love

WinB143 xxxx

Edited by Winb143
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Hey Debbie,

Welcome, It's good to hear that you are keeping in touch with people that are going through the same things as you. It will help you greatly to know that you are not alone.

You are not useless, you just need time to recover. Things will start to get better, be patient. :-D

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  • 2 weeks later...

Saw the GP just over a week ago about the woosey head and dizziness. She suggested stemetil 5mg per tablet up to three times a day. It also has the added bonus of being anti sickness aswell. I stopped my original anti sickness because of this. Stemetil has been a marvel. My head no longer has any dizzy symptoms at all. I feel just about like I used to just with headaches if I do too much and forget to take regular paracetamol and some tiredness but that is also a lot better. The only downside seems to be that I spend about an hour in the middle of the night completely wide awake but I do drop off again. The directions say that this is a medication for schizophrenics but if it sorts out a SAH head too then great. Anyway I would be interested to know if anyone else has tried this drug long term and if there could be any other side effects lurking because it seems too good to be true so far. I am also down to taking one 5mg tablet a day too. I am seeing my vascular consultant in a couple of weeks so I will run it past him anyway.

Thanks so much for the advice and support as I know from reading many stories on here that this is just the beginning of my journey. I'm sure the dread of it happening again will lessen in time. Although I have a teenage daughter and she gives me constant stress I can cope now whereas a few weeks ago I couldn't at all. I feel so good now that I have sold my house this week and am taking on a move! I thought it wouldn't be possible for months or years to tackle but I feel life is short to not try and do all that you want to and can do. Debbie :-D

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Hi Debbie and welcome to the forum.

your post jumped at me when you said " just feel a bit useless". I remember saying the same in one of my early posts! Please please give yourself a lot more time to come to terms with what has happened to you. I myself am surprised at how much we can accept things over time. I know thats not what you really want to hear at present, but I have had those feelings too and found we change our priorities over time. I always believed that my childrens welfare was first in the priority stakes and although that hasn't changed for me but I have come to realise that lots of other things I believed were high on the list, really aren't.

You take things easy for yourself and you will be able to fulfil the roles prioritised by you.

I've had the dizzy floaty feelings and after almost 3 years I still occasionally feel "strange". The main thing is to feel you are improving week on week. In the early days, as you are, you should be able to notice radical improvements. As time passes, this will slow down, but any improvement is a positive thing and I believe these never stop slapping us in the face. I will never give up hope of complete satisfaction with life now. We have been thrown into the unknown and I now think that makes us better people in the long run.

Good luck with your recovery and don't hesitate to ask any questions. There are so many people here willing to support each other and all have different situations. we all have the same goal though .

Take care of yourself and give it time.

sally xx

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I appreciate your support and I am beginning to realise I'm lucky to be alive and in one piece. I am 42 shortly and maybe wouldn't have made it had my SAH been worse. I had a sister-in-law who died at 39 of unknown circumstances so my husband doesn't have to join his brother just yet in being a widower. My head is pretty fuzzy today as I have been overdoing it and my teenage daughter is going through a rough time herself. Friends mean well but any conversation over half an hour is extremely tiring but it's hard to tell them you need to rest and to go. My husband is getting better at finishing people's conversations when he knows I'm getting too tired we need to work out a 'code word' I think. I need a bit more rest and a bit less stress than I was getting and then I should perk up again. Did you find recovery is some days good then it dips again? :roll:

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Hi Debbie

recovery certainly is peaks and troughs. I'm coming up to 6mths post SAH and just when I think I can do it all, I end up in bed, wiped out or with head aches. i still haven't found that happy medium of what I can do and what i shoud be doing - its sooooo frustrating.

"looking so well" also makes it harder for others to understand fully what your brain is trying to do as it recovers from the major trauma it has survived.

Plenty of water and try not to be too hard on yourself ... baby steps (I really should take my own advice)

:-D

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Yes I agree the 'you look so well' you get from people tends not to make me feel better. they mean well but yes you may look normal but your head is in a washing machine at the same time. Going round and round and not always making sense of things. I have had trouble with long explanations or conversations. After a couple of sentences I have no idea what they are talking about. I have to have instructions broken down into managable bits. I think i'm very lucky to be eight weeks on and doing so well. I must be difficult for you having to coils. The ending up in bed thing is the same for me. Just when you want to get things done you have to lie down or fall down. I know I need a rest when I begin to sound drunk, is it the same for you? I went to the cinema today but it was such a big screen with lots of flashing and jerky filming. I wished I hadn't gone bu you have to try things or you don't know.

Drinking a lot is what I have to do a lot of anyway because I only have one kidney so I got into the habit before the SAH but you really notice when you haven't drunk enough. My head feels really dry. Aircon is the worst atmosphere, you need litres and litres to stay hydrated.

Hope you keep on a good road to recovery.

Debbie xx

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Hi Debbie, welcome to BTG!

I wear earplugs to the movies and find that it works great. I can still hear everything just fine and I don't feel as concerned about how loud the theatre is. I love going to movies but in order to tolerate them I bring my earplugs now, shut my eyes when there is too much fast moving activity, and have bottled water in my purse! I am excited to go see 'HUnger Games' but not this weekend when it's opening weekend and will be very busy. I will wait a week or a few weeks so I can have some elbow room in the theatre.

I think it's good to go out and 'test' yourself. I've been to Las Vegas twice since my NASAH and that's a great test. Lots of visual and auditory stimulation and lots and lots of walking. You are right, you won't know how it is until you try. But do listen to your body and if you feel tired or ill then it's time to pull back and rest.

Sandi K.

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Hi debbie

The sounding drunk .... oh yes, words slurred and mixed up .... definitely a sign I was tired and had over done things. Fortunately its not as bad now, well I don't sound drunk, just get words mixed up or struggle to find the right word.

Only last night had a row with my partner and had to remind him how my brain works, or doesn't work ... he got frustrated with me because I had to ask the same question 2-3 times to be able to process the answer - it frustrates hims because its usually basic fundimental chores that I am questioning and he thinks I am not listening to him answer because I have to ask again.

I think as well because some days are better than others, there is no set pattern, just when things look good, I then have a day when I really struggle to understand and like you have to have even the most basic instructions broken down into small chunks.

He even admitted it would have been easier for him to cope with me if I had something wrong - something he could see, rather than just seeing me 'normal' - because he can't see what my brain is doing - had to remind him how frustrating it is for me as well, like you said, having a brain like a washing machine is not easy to deal with and very difficult to understand yourself, let alone try to explain it to others.

Going to the cinema was a brave move .... it took me 2-3 months before I could even sit and watch the TV. Use to take myself of to bed just so the rest of the family could watch TV!

Like you say, got to keep trying, I still don't really know my limitations but 6mths on, I think I am slowly learning. But as each week passes, I do try and look back at what I've acheived, and usually its a bit more than the previous week, so I know i'm getting better (not as quickly as I woud like!!) just got to be patient ....

xxx

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I tried going without the pills for a day. Since then I have had a constant headache. I took them again and will not try that again in a hurry. Still it's the only way to guage how you're doing. Perhaps I am doing too much as my husband keeps telling me. One of my Doctors in hospital did say though that recovery will be up and down and not a steady up as recoveries from other injuries usually are so perhaps I'm having a bad week after a couple of good ones. My husband is very patient and considerate and helps with the housework and does some of my typing for me for our work. My daughter is doing all the cooking so I am very lucky. They may get fed up as the weeks and months go on though. I am seeing my vascular consultant next week so it's my first visit back to hospital since I left there. Not sure if I'm looking forward to it or not. I don't see my Neurologist until July.

I'm feeling a bit emotionally numb at the moment. I know I should feel a certain way but I can't actually feel it. I can cry but that's it. For a woman nearing the change it's no bad thing just a bit odd. Anyone else been through a similar experience?

I am reading 'A dented image' at the moment and finding that very helpful. Thought I would give it a try as it has been recommended by so many out there. Your continued support and kind words are much appreciated. Debbie :wink:

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Welcome to our sanctuary Debbie. It is a great place to end up when you are cut adrift. I empathize with you. The more you read here the more you realize that you are not alone, and the sensations you are feeling are not fantoms of imagination. I know I have headaches and I do try to drink more but I have such a hard time doing that, I think I need to have an alarm go off every hour and force myself to have a glass of water. It is a bit hard when you work on the road though.

If you have any questions be sure to ask them, there are no dumb questions, maybe the odd smart ass answer but no dumb questions!

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  • 2 weeks later...

I had my appointment with the vascular consultant who signed me off with a 'how are you feeling' and 'try and weane off the pills'. That was it! I had a day just on paracetamol but spent the next two days feeling so rough. The headaches and dizziness were as when I came home weeks ago. I wish consultants could try living with our heads for a week and see how easy it is to do every day things without the pills. I'm back on them again now but the dizziness is still not going fully or the headaches. I take a lower dose than prescribed for codeine and stemetil so an increase not a decrease may be needed. I do hate the false sense of recovery that the pills give you though. On reading people's stories I know it's a long roller coaster of ups and downs with no particular end even. I still wonder whether it will happen again though even though the consultant said it's a near zero chance. Because they didn't find anything I don't know what happened in the first place.

Anyway on the up side I should be moving home in a couple of weeks and be out in the country with fresh air in abundance. My dog has been sleeping in the afternoons with me which is good company until he decides to get up and sit on me to wake me up. I don't get my words mixed up as often as before and I can manage a bit of work each day. I do get anxious though in crowds or with strangers and often just have to leave straight away and get out the situation. Has anyone else found that in a situation that's overwhelming they just have to get up and go there and then. Even sometimes when I'm working I have to say to my husband that's it I have to lay down now. It is very annoying and not me at all, I was outgoing. I wonder when this will improve?

Anyway I'm off for a lay down! :sleep:

Debbie

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Hi Debbie,

Yep, I am famous for saying 'I've got to out of here' & walking off. I can not tolerate noisy or busy situations. I also can't cope if I'm near a road and the traffic is noisy. It's as if I can't filter out noise the way I used to. If a noise starts to irritate me, that's it, I can't stop hearing it and I get panicky & feel aggressive if I can't get away. Sometimes it's just people talking to each other & I want to scream 'Shut Up' at them, total strangers or not, children wailing in shops is another major trigger for me. Over time though, I have learnt what I can't tolerate. Some things, like shops are unavoidable unfortunately but I choose to avoid social outings if there will be more than a couple of other people at a time or it's in a noisy environment. I don't like being this way but I have to live life in a way I'm comfortable with as much as I can.

Moving to the country sounds lovely. Hopefully all that fresh air will help you feel better & you'll get some relief from the headaches.

Michelle x

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Hi Debbie,

My sister is really kind..she means well but I told her hospital said "You cannot have stress and you must not be stressed out"

It's true we have to be calm so a white lie when you know peeps are going to go on and on .....

My Sis in law told me how to use d/washer....she means well but I rinse my plates before d/washer...She said NO NO you don't rinse them..I was like Well I bliming do arghhhhhh.So I am asleep when she calls lol bad Win.....

So Debbie you just pick who you can cope with until you feel a little better...they will understand and if they don't...!!

Take care of you Debbie xx

Love

WinB143 xxxxxxxxxx

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Hey Debbie

I found that taking codeine actually made my headaches worse - I was rushed back into hospital 3 weeks post SAH with another suspected bleed - it turns out it was an analgesic headache caused by the codeine I was taking. I came off it as soon as and for the first few days my headache was awful but then it calmed down and I can honestly say that since then I have never had to take anything stronger than a paracetamol - I also cut aspartame and asculphame (sweetners)out of my diet and that helped a lot too.

I'm not medically trained and can only let you know how codeine affected me but it may be worth talking to your doc - I had the same experience with tramadol too (any opium based drug).

Good luck hun and I hope you start to feel better soon.

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