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Joan

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Had my SAH on 17 November and was only found next morning. It was not until I came around after a 5-hour operation to insert the coiling that I discovered what had happened - and only since I've been out of hospital that I've begun to learn about SAHs. At Charing Cross, the emergency treatment was world class but there was no follow up or support - I was told I could "resume normal life" when I was released on Monday (eg 8 days after my attack) which surprised me, given I have been largely bed-bound with exhaustion (not helped by the post-op routine at the hospital of waking you every hour on the hour to check mental awareness and eye reflexes ...ah, those little flashlights in the eye routine). Currently am coming back to health, but still feel like my battery has been removed. Am on Nimodipine, Dihydrocodeine for the bad headaches and paracetamol for the minor ones. Had period of really bad depression but that has passed. Am doing lots of crosswords (US style ones) to re-energize the brain and also started back with my work (I do business analysis for a big law firm and am fortunate to be able to work at home). The work bit went better than expected but 5 hours on the computer wiped me out.

Next week am seeing the surgeon who trearted me for cluster migraines 18 months ago to discuss whether there might be any relaionships between those and my SAH. Also read that people who have hypermobility are also more prone to SAH - and I certainly have hypermobility as a pre-existing condition.

Sorry to go on at length, but having received next to no information in the hospital and feeling too physically drained to venture far you all are my first external contacts (apart from am army of wonderful friends) and it is unbelievable to kmow there are a whole group of people that have been through this. Welcome all advice on what to expect in these early days, and keen to hook up with any support groups in the London area.

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Hello Joan

Welcome to the family. You will find everyone very friendly here and willing to share experiences, although we are sometimes a slightly mad bunch. :lol:

Feel free to ask any questions you may have and I'm sure someone will have some reassuring words.

Regards

Keith

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I guess the main thing is to get a sense of the road ahead -- which I am sure has as many detours as there are pebbles -- it had been really useful to read about other people's experiences. Would love find another "hypermobile" SAH - because it seemed such a whacky causative factor. And equally would love to find a London-based support group. Will contribute cookies with enthusiasm.

And please reassure me that someday I can re-acquaint myself with the odd glass or two of red wine....

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Hey there

Slightly mad!! How very rude Keith - speak for yourself!! :lol: Someof us are totally mad!!!

Hey there Joan

2 weeks pro SAH and working already - this lot thouhgt I was mad after three weeks. I was on Nimpodine after mine and also had a week of bed rest. The headaches are the worst part of this -or they were for me anyway. Once they settled down I found that I was more emotionally stable too.

Karen, the wonderful woman who runs this website, gives a brilliant piece of advice and if you never listen to another peice of advice in your life, listen to this one - Simply - listen to your body. It will let you know whether you are doing too much too soon.

I found drinking at least two litres of water a day helps too - it helps the body rejuvenate and cells repair etc.

Like Keith said, feel free to ask any questions you like, we're all here to help if we can.

And finally, I always say this but it is so very true - Welcome to the best virtual family you could hope for.

Hope to hear from you soon

Sami xxx

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Hi Joan

Yes welcome to the site.

I too think its wonderful your back to work, Sami's right you have to listen to your body, drink plenty liquid & rest as often as you can.

If you've got a question we'll all put out thoughts into it.

Hope to speak again soon

Take care

Louise.x

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Hi Joan

I'm not a wine drinker, but I do enjoy the odd pint of beer. :wink: I found that alcohol made me feel a bit strange at first, I would come out in red blotches and feel flushed. After 3 months I can now enjoy a couple of pints now and again, so I'm sure you will soon get back to enjoying your wine. :)

Regards

Keith

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Hi

I waited until I'd stop the course of Nimopodine before I touched alcohol. Just be wary that it may affect you differently than it did before. I'm a lager drinker and i used to feel tipst after two or three pints - now i don't feel so bad but the next morning is a killer. The hangovers are worse now than they were before and now i can't take Alka Selzter!!

Just remember it is a long road to recovery, but you are allowed to make as many pit stops as you like and some of them can be in a pub or wine bar :lol:

Take care

Sami xxx

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and I had to laugh at one post i found complaining about the quality of daytime TV. When my mother, at a very advanced age (OK, she was as old as the earth, and I was born when she was 86) was on bed rest after hospitalization and watched daytime TV for the first time. She was of the generation that regarded anything other than the News Hour or business reports viewed after 6PM as tools of the devil. After 3 or 4 days of Sally-Jesse Raphael, Jerry Springer et alia she was convinced the participants were mental patients hand-picked for extra-high levels of deviancy. Watching Jeremy Kyle has, for me, been...well...revelatory and not ina good way.

I am sure may SAH sufferers feel like me as if you have been given a second chance, and don't want to waste it. This feeds my type A demon ("have you cracked the atomic code seeing as you've been laying on your Italian butt all day" goes the inner voice) and so I am working hard to re-programme that message to say that this episode a second chance to improve my quality of life, not quantity of hours worked.Frankly I've done enuf hard work in my life to justify a LOT of duvet days, advanced sloth and online clothes gazing (having been told I have lots to lose am dreaming of my new incarnation)....

Many thanks for all the kind words of wisdom. I will listen to my body and swap the woes of J. Kyle for the soothing strings of Mozart.

All the best, Joan

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Yeh I had to cut back on having a drink - not that I actually drank all that much before but now its less, sometimes I can feel like I have a hang over & its not its just how I've been left. :?

But have to say I certainally dont like wine much now Red or White I used to drink Becks but find that just goes to my head, litarly!! :oops:

Not really into daytime TV except when I'm having a snuggled up sort of a day, I like the cooking programms reminds me of what I COULD do, the chat shows like Jerry Springer & such my head cant see the sence in them, more than likely the way I look at things now, you do tend to see things differntly at least I do.

Louise.xx

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Welcome Joan!

I can't add a lot to the advice you've already received, but I must say that I am very surprised that you are working so soon after your SAH! That's amazing! Do allow yourself to go as slowly as you need to getting back into the "swing", and do expect the "swing" to be slightly different than before. One thing I've taken from my experience is that it is a gift in a way to be allowed to reprioritize your life. While it's frustrating that I'm not quite what I used to be, I am better in other ways. Slowing down has made me really aware of using the energy I do have in healthy ways. And the healthy ways are not always PRODUCTIVE. And that's OK!! Wow. Huge revelation there. Also, don't be shy about saying you need to rest... to friends, family, co workers or whomever.

My SAH was mild compared to some, but I am still dealing with the change in me a year later. I'm sorry that my "story" isn't posted yet. Maybe I'll get to it when I'm being productive! hahah. Anyway, I'm here for you too if you have any questions. Lovely people we are here. :)

xo,

Annie

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thank you all for making me feel so welcome. I am really grateful for having found this site, and have a couple more questions on which I'd appreciate your advice/guidance.

How important is a full night's sleep, versus a bitty night's sleep and much napping?

I've always been a pretty poor sleeper - not in falling asleep but in staying asleep. Once I am up, that's pretty much it. When i first came home 5 days ago I'd no problem sleeping through the night, including after waking at 3 and 6 for medication. But now i appear to be reverting, darn it -- although napping at the drop of a pillow, quite blissfully. Do you all think I should just fall in with my old sleep pattern with its periods of wakefulness, or seek some type pf sleep aid from the doctor/ chemist/ health food store?

Are massages harmful?

Was considering a massage to help with the relaxation process but shocked when the salon told the friend who attempted to book for me that people who had SAH had to wait a year (and have a doctor's release) before getting a massage. Is this familiar to anyone or do you think they were just being cautious/paranoid?

How ready is ready?

Several people on the site have underlined the importance of listening to your body in determining level of appropriate activity. I acknowledge that my sleep has not been helped by the fact I've barely been out of bed since coming home, as the answer from said body about its enthusism for getting up has been "not very much" and "I LIKE being horizontal, lady! Chill!!". Today am going for my first walk since my SAH on 17 November as well as a visit to hairdressers (at the mo, my hair looks like I've been wearing a helmet for 5 months). Have other people found it hard to get motivated and mobile? I genuinely feel like someone has taken my battery out and that physically, I am operating on "standby". Should I be more proactive about just getting up, out and walking or is the message about, and love of, laying in bed normal?

Last question - I promise - is about appetite.

Low levels of physical activity doubtless account for the fact I don't feel terribly hungry and often feel a bit queasy. Anyone else find that? I am sincerely not complaining because the doctor has advised I need to achieve a much lower body weight as part of the lonterm management of SAH....

muchas gracias

Joan[/b]

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Hi Joan

How important is a full night's sleep, versus a bitty night's sleep and much napping?

For the first few weeks out of hospital, my sleep pattern was broken. I would only sleep for about 4 or 5 hours at night and slept a lot during the day. Your brain has suffered a gross insult and it needs plenty of sleep to heal. I'm much the same as you - once I'm awake, I'm up. I am now back to my pre-SAH sleep pattern after 3 months and rarely sleep during the day.

Are massages harmful?

Don't really know the answer to this one, but I would suspect that they are being cautious/paranoid as you say. Maybe someone else here can give you a better answer.

How ready is ready?

The advice about listening to your body is very valid. You are only 2 weeks post SAH and are very early in your recovery. At that stage, I was mostly in bed or in the armchair. Once you get out and start building up your level of activity, you will probably feel less lethargic. Try not to over do it though. I sometimes did a bit too much and regretted it for the next couple of days.

Last question - I promise - is about appetite.

I lost over a stone whilst in hospital and had a small appetite when I came home. I think that's quite normal due to the low level of activity. Unfortunately my appetite soon built up to it's previous level and I've put all the weight back on again. :(

Regards

Keith

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Hi Joan,

I certainly agree with Keith's answers........haven't got a clue about the massage, but they may well be right, as I presume that massaging the body will affect the blood flow.

I'm 16 months post SAH and my sleep is still all over the place...I have periods of unbroken sleep and also waking up at about 3.00am in the morning and as bright as a button! May be it's a case of just having too much brain activity going on, when I'm experiencing this. Stress also seems to play an important factor on my own sleep pattern. There seems to be a few of us with sleep problems, just try not to worry to much about it and catch a nap during the day if you can. I haven't found that a nap in the day has stopped me from sleeping at night, so if I'm tired I will rest up, even if I can't achieve forty winks.

Try not to overdo things when you do feel "normal".....pace yourself and wait for your energy to build up. It seems to take a minimum of 3 months for most people to achieve a bit of "normality"......but it all depends on the severity of the bleed and any remaining physical complications that you may or may not have. I have found that even at my stage, when I overdo things, the fatigue can kick back in with a vengeance and I suppose it's the brain's way of telling you to slow down again. It takes quite a while to get know the signs and to learn to live with what your body tells you.

I also lost about a stone in weight after coming out of hospital. It took me a while to get my appetite back and like Keith, I've put all of the weight back on! Again, I still have periods even now where my appetite disappears, but most times it seems to be caused by stress.

Anyway, hope that the day is kind to you. Good luck with the hair!

Take care, Love Karenxx

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Guest Jeanette

Hi Joan

On your question on massage- I had a gift voucher for a massage for a christmas present (probably about 3 years post SAH)

I changed it to a reflexology session as I was cosidering doing a night school course in reflexology at the time and thought it would be useful to have a trial session.

The girl did a medical questionaire before she started and said that she wouldn't do it (nor the massage either) because of the SAH but also that I have high blood pressure. She said that she would need a doctors letter to say that it was o.k. to go ahead.

Eventually, she decided that a pedicure and foot spar would be o.k. and about the only thing that I could spend the voucher on - but the next day I had a problem with haemorrhage in my fingers (which I have had from time to time) so I don't know if the foot spar had any bearing on that -but will be cautious in future with anything similar.

I would certainly check with your doctor before trying massage because of the incresed blood flow.

Good luck

Best wishes

Jeanette

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Hi there

I'm three months post SAH and like Keith and Karen lost a stone in hospital - I was over the moon -I'd been on a adiet ofr ten years - Jees starving for a decade!! But again I have put it back on and then some!! Even now there are days when I have a loss of appetite so I graze rather than have big meals - it keeps the blood sugar levels good and I don't feel so sick.

As for sleeping - well pretty much the same again as every one. Sleepless nights mixed with full nights mixed with broken nights for the first couple of months. I found that the sleeping during the day was putting by body clock out but also that this made the fatigue worse so I still have a bed in the office and I use it whenever I feel tired.

Sorry I can't help either with the massage thing so it's worth talking to your Doc about it if you're not sure.

Hope all is well other wise

Love Sami xxx

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Neither the hair nor nail treatment appear to have had any ill effect. What I did notice first time out amongst the masses is that I tend to scamble syllables on long words and the physical coordination is so-so at times. But at least I feel more human - or at least, viewable.

Guys, I am sorry to raise yet another question, but I wanted to find out from people whether they have stopped using mobiles or if they continued to use them, are using the bluetooth earpieces. My partner, who is fairly savvy medically (he works as a consultant to the pharma industry) is very uncomfortable with me using a mobile. Sadly Motorola don't do a wired earpiece (I guess that is now dinasaur technology) and only offer the bluetooth earpiece. Don't want to microwave my poor old brain....

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Hey there

have a mobile but the only time I use bluetooth is to transfer files. I've not experienced any other problesm using the mobile and I wasn't warned not to use one. In this day and age of technology I'd have thought that if it was detrimental then we would have been warned, but check it out with the Doc or whoever.

Samixxx

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Hi there

About mobile phones yes I have one & I consider it a life line when I'm out in the begining it meant that I could call either my husband or someone if I didnt feel well. I never have had to do that but its always there, ear pieces no dont use them too noisy in my head I find for me anyway.

Dont think you should use something to help you sleep trying to get into a routine of going to bed around the same time, I used to nap a lot during the day at one point I'd have slept all day but that was the meds I was on, but I found when I stoped naping so much in the day the nights sleep improved.

However sleep is the best cure they say it helps the body repair its self I believe that.

Gosh yes to your question on How ready's ready, my battery still goes onto stadby a lot of the time but in the begining it was like my: get up & go, got up & went (& forgot to come back)

My appetite totally changed I dont eat as much now I rarely feel hungry & I eat things that I never used to eat, & some things I eat I dont like now, I think you just have to give it all time to settle down find out what is right for you what suits you.

Dont forget its very early days for you.

Hope all this rambeling helps.

Take care Louise.x

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Joan

You'll find that Louise's ramblings normally hold a lot of good advice and information!!! She doesn't do herself justice.

Your body will tell you when to sleep and like Louise, let your get up and go have a wee rest and let it be more of a "i can't be bothered today" cos one day the "get up and go" will be fully rehcarged and you'll have the time of your life!!!

Sami xxx

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Aw! Sami thank-you.. :?

I never know if I'm explaining myself right or not - its my disability you know.

I dont know about good advice 7 years experiance is what I've got, been there, done that...ect....

Yep when that gets fully charged well look out....... :cool:

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