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Post SAH Care - Started by Pete Chis


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[h=2]Post SAH Care[/h]

My wife had a SAH just over 3 weeks ago. Her aneurysm was clipped and she is now at home recuperating. Fortunately there doesn'y seem to be any permanent damage. She has no physical side effects or pain. She is however very tired and fatigued. Her sense of smell has been impaired, but compared with many others she seems to be very lucky. My main concern is how best I can care for her. A real worry is possible epileptic fits. Does the risk of this diminish after time or go away completley.

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Hi Pete and welcome...

It's obviously very early days for your wife, but glad to hear that she's doing pretty well!

I had epileptic seizures during the brain haem and another one just after the coiling op. I was put onto the anti seizure medication Phenytoin for 10 months as a precaution and am happy to say that I didn't experience another one. I had loads of problems with the side effects of these meds, so I was allowed to withdraw slowly, just in case I had developed Epilepsy. I believe that it's not uncommon to experience seizures during or just after the bleed and was told that the likely cause is the blood causing irritation. I have known only a couple of people on this site to develop Epilepsy months or years down the line from the bleed, so I would imagine that it's pretty rare to a degree, as I've heard that the risk should diminish as the weeks and months pass. Did your wife have seizures during the bleed?

As for smell, loss of it or a heightened sense, then there's been a few people on here that have had the same. Since having the SAH I've had what I can only call a smell of "burnt toast" up my nose ... some days are worse than others, but I've got it now, as I type this....apparently it's quite a common thing post SAH, but nobody can give an answer as to why!

I would say that one of the best things that you can give your wife, is emotional support ... many of us have experienced acute anxiety after the SAH, probably a bit of post traumatic stress added to the mix, emotions all over the place, not wanting to be left on our own etc ... I've probably left out quite a few others, but am sure that other members will chip in.

:wink:

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Hi Karen

Thanks for your reply.

My wife was fortunate in that she didn't have a fit during or just after the bleed.

I'm hoping that after the past 3 weeks that the risk of one is quite small however probably can't be completely sure.

Yes, I'm sure that my wife, Sandra, will need a lot of emotional support.

Apart from the physical tiredness and fatigue I'm sure that she has lost a wee bit of confidence and will need time and support to regain this and get back to some degree of normality.

It's quite amazing how your life can be turned upside down by this.

We're very lucky to have a very close family with friends as well to help.

Once again, many thanks

Pete

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Hi Chris,

Before my SAH I had eplilepsy...They started when I was 14 to 15....they said it was due to hormones?? Then when I had daughter I had a few more while in labour....and now after SAH....seems like my body cannot take any pain and throws a fit ......

laymens terms....or My Terms ..lol

Not had one since 2010.phew !!

Good luck to you and wife Chris

All the Best

WinB143 x

Edited by Winb143
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Hi i had a seizure when I had the SAH was on anti seizure meds for year & a half, but havent had anymore...

yes emotional support your body thinks nothing has changed its hard convincing someone it has...

good support network is crutial something I wasnt so lucky to have so know that, but knowing that there's others out there that understand is great..

take care

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Hi Pete,

I would imagine that if your wife didn't have a seizure during or after the SAH that the risk is pretty low. You can never say that there won't be a risk, but from what I've seen on this site in the last six years, that the percentage of people post SAH that go on to develop Epilepsy is extremely low. Try not to worry and as the weeks pass by, you'll begin to feel more confident yourself. I would also say, stay away from the medical papers etc on the web as I scared myself witless reading them when I was in the early months of recovery....I'm happy to say, that 7 years on from this bleed, that I'm still alive and kicking!

Yes, life is pretty topsy turvy for quite a while ... it's all normal feelings and I don't think that there's one person on BTG that wouldn't say that their family were also affected by the fallout....having a close family and good friends are something to be cherished at times like these. You will get a sense of normality back with time and maybe a few adjustments.

I don't think that there's many of us who wouldn't say that they didn't lose confidence .... it takes a lot of time and patience to re-build it and with probably a few ups and downs along the way...:wink:

Being nosy....which I am...can you tell me how old Sandra is?

You've probably trawled this site already, but if you haven't seen the video "Patients Experiences of SAH", click on http://www.uhs.nhs.uk/OurServices/Br...emorrhage.aspx

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I agree Karen...sometimes after I had a fit...it put me back,,as I was so scared to go out..but I made sure I felt okay and no shakes as I call it....no heady feelings etc ..then all was okay....harder work for onlooker I think...but after I had one..I used to feel I had run a marathon lol wish I could now !!

Love to All

WinB143 xx

Edited by Winb143
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Welcome to you and your wife.

I had very strange things with my sense of smell and hearing at first and it's pretty much gone now. Occasionally, I still get a very discerning palate in the AMs...esp with orange juice - it seems so intense or yogurt.

Also, when I was released from the hospital, I was on ani-convulsion meds and then slowly weened off. It was only about a week or two before I felt comfortable that I was not going to seize. You just feel so vulnerable even if there is no evidence to support your fears. Just watch and wait. The time helps.

I am seeing a neuropsychologist as well because I did develop PTSD symptoms a little later on. Watch for this and don't let the sound of a therapist sit hard in your ear if your wife should need it later Or Not everyone is different.

Hope you get the support that I've gotten here on BTG.

~Kris

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Welcome to the group hope you can find all the answers to the questions you are about to ask. Having had so much help on this great site I was trawling for answers and came across this hope it will help you both . Before you sit and watch this it lasts 30 odd minutes get a cuppa n get comfy and enjoy this, as it has help answer so many questions for me and my daughter good luck and don't quit ask for help and here you will find all the support you need. Now for the link look here. http://www.uhs.nhs.uk/OurServices/Brainspineandneuromuscular/Neurovascularservice/Neurovascularconditions/SubArachnoidHaemorrhage/PersonalExperiences/Videopatientexperiencesofsubarachnoidhaemorrhage.aspx

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