Can NASAH happen again?

[Sherry Murley]

Im sorry if i am posting in the wrong place. Some of you may know that I am new and have not posted anything except my introduction here. I have done so much research on SAH but I can not ever seem to find a real answer to the chances of it happening again. I even asked my neuro surgeon but since he does not know why it happened you couldnt say. Has anyone here had it twice? It is frustrating as fear gets me down sometimes. Thank you for reading.

[jess]

Firstly sherry welcome to btg but sorry you have to be here xxx

It is really slim of having another bleed once you have had one however if you smoke stop if you drink alcohol cut down I don't really know what else to add drink plenty of water (it helps with headaches) xxx

[Sherry Murley]

Jess, I was a smoker but when my bleed happened and the dr told me it "could have" contributed I quit. Not once have I smoked since that day and it was honestly been rough. Thank you

[Chelle C]

Hi Sherry,

 

So sorry you are having such a hard time with the worry of it happening again,

 

In the early stages of my recovery I was really terrified that it would happen again,

I`m now 2 years post bleed and I don't worry so much now,

 

You may benefit from some counselling, try speaking to your GP they may be able

to arrange that for you.

 

I had some talking therapy and it did help a lot, I also listened to the advice that I was

given from everyone at BTG, we have all had the worry that you are having now.

 

You will get through it as you progress with your recovery, it`s all part of the healing

process I think.

 

I used to use a distraction if I started to worry, I`d find something to take my mind away

from the thoughts I was having, my cupboards have never been tidier.

 

Why not come on here when you are feeling worried we are all here to help each other

through the difficult times and you will find a lot of helpful advice and of course a lot of

new friends at the same time.

 

Try not to research things to much, you can scare yourself, I know I did.

 

You take care and I wish you well with your recovery,

You know where we are if you need us,

 

Look forward to hearing more from you.

 

Love

Michelle xx

[Winb143]

Sherry,

 

I was a drinker and smoker and now given both up apart from a bucks fizz drink on special occasions and now weigh a lot more lol !!

 

Smoking took hunger away so I turned to chocolate, I was  also told we are as likely to have one as someone who has never had one.

 

BTG and all these people started telling me what happened and one woman said I had mine 22 years ago, I think it was that ??

 

So try and look forward as life is for living, I cannot tell you not to be scared as I was so worried when I first had mine. 

 

I was told I must not stress myself and life can be stressful , so I told my family in a nice way," Keep your problems to yourself" lol

 

So if you see a woman on here making up silly songs it is just me keeping Stress at bay xxxx

 

Be Well and smile at least 3 times a day and keep positive XX

Love

Win xxxxxxx  okay smile one ..lets see it xxxx lips up towards eyes lol xxxx

[Skippy]

I felt the same for a good couple of years - constantly worried that any headache was another SAH.  10 years on I still have moments when I get a pain and hold my breath.  I don't think the fear ever goes away completely but it does settle.

 

I had an aneurysmic SAH so I had a reason for my bleed.  I have to admit that I haven't stopped smoking and haven't been advised to, but every specialist will advise differently.

 

Drink plenty of water and try to stay as calm as you can xx

[Macca]

Sherry,

 

All I can say is that my doctor said it's more likely that others will suffer one before I ever have another.  I have never known anyone have a second one but it's one of those things I think - you can never say never, but it is probably most unlikely. 

 

Then again, I may never get run over by a bus but the risk is there every time I cross the road.  As with anything else that may pose a risk, just do what you can to minimise it and get on with your life.

 

That is the best I can say, I think.  As the others say, cut out the stress (please don't stress yourself over this and let your mind run away with itself), cut down on the alcohol and stop smoking.

 

Enjoy life as best you can.  Control what you can control and don't worry about what you can't (just try and avoid it)

 

Best wishes,

 

Macca

[Daffodil]

Sherry, it's understandable to have that worry, I think i Can safely say we have all had that fear at the back of our mind especially in the early days and the advice to talk that through really does help you reach some acceptance of what happened.

 

I can't tell you that it can't ever happen as I did meet someone at my treating hospital at a recent check up who had a second SAH which wasn't my best conversation ever in a waiting area but when I then asked my Neuro surgeon again of the risk he assured me it was extremely rare for that to happen in his experience.

 

My attitude is that like Macca says we have to let go of what we can't control. I figure that in the same way I couldn't have prevented my bleed when it did happen I can't prevent another so I just take each day as it comes and hope everything holds fast!

 

You are such early days in your recovery. The blood went into the place where it was never designed to go and plays havoc with how we feel, our emotions as well as our physical state so be gentle and considerate of that.

 

It's natural to have fear and be scared and it's ok to say that and even better to ask for some help as you adapt. Go steady now. It will get better, the fear will hold less of a grip given time.

[Chris G]

My Neurosurgeon told me that the odds of having another NASAH would be like getting hit by lightening twice.  He said if I had another one, I should play the lottery.  In other words, he clearly believes that because I had one, it does not make me more likely to have another. 

 

I had concerns too.  Especially since he could not tell me why it happened.  How can you be sure it won't happen again if you don't know the underlying cause?  But he said that he bases it on thousands of cases that have happened and have been researched.  Mine may have been caused by injury (I rode a rollercoaster that day and then went for a run), or it could have just "happened".  But he convinced me that I should not worry about it happening again.

 

As my headaches get better, I believe more and more that I am at no risk.  Even though my headaches are different now, it could be the result of the EVD or other stress I experienced while filtering the blood.  But they are not coming from another NASAH trying to happen.

 

As you know, I am not a doctor and cannot give medical advice.  I am just passing along what I was told in my case.  I believe that as time passes, you will lose the fear of reoccurrence.

 

I wish you all the best.

 

Chris

[Susan]

Hi Sherry

To echo what Chris says, I know that it is difficult to accept that something will not happen again when no-one can give you a reason for it happening in the first place, but I think there is some comfort to be found in the statistics.

 

I had my NASAH back in January this year and initially also did loads of research online looking at medical studies of the long term outcomes of SAH patients. The chance of a rebleed for NASAH appears to be very low and even lower if you had a perimesencephalic bleed - I only managed to find one case of a recurrence of PM-NASAH in a patient, and the medical journal cited it as a unique case.

 

I know I read on your other post that you have trouble getting to sleep. If you are going to do online research then do it early in the day - never near to bedtime. I know from experience that it is not conducive to a good night's sleep!

 

Take care and try not to worry. X

[Winb143]

Also I have learnt not to google things as it scares you more than helps you xx xx

 

Good luck All

 

Win xxxxxx

[Greg 21.01.15]

Hi Sherry,

 

I also had an NASAH, same as you, and we asked the same question of my consultant, and his attitude was that my risk of having a second one, is baseline i.e. no greater chance than anyone else in the population. Giving up the cigs is one of the best things you could have done to reduce risk of reoccurrence or of having other vascular/heart issues, so well done, keep it up. 

 

Everyone fights this little demon in their own way. I took onboard what my doctors said and reckon that's very little I can do about it apart from trying to be reasonably healthy in what I do and eat, so I try not to give it too much thought beyond that. 

 

I'm 17 months out from my NASAH, and I have my ups and downs about this, but if I have learnt one thing from this malarky, we've got one life, and we all here on BTG are grateful to have held on to it through it all, so I am going got enjoy it (with the occasional blip, you can't help it!).

 

Good luck, and as you've found, this is a great place to come for support to share the good and the not so good.

 

Greg

[kpaggett]

From what I understood, if on your brain scans they found un-ruptured aneurysms, then you'd have to be monitored.

 

Next, if you had other things that may have contributed to the bleed like smoking, hi blood pressure, alcohol consumption, that these could increase your risk, but if they couldn't even find what caused it (as in my case), and I had a healthy lifestyle and no family history.

 

Then the likelihood of it happening again was as Macca said, was more likely in a different random person than me.  You see, we had our brains scanned.  Most average people don't so they could be walking around with a vessel waiting to burst.  The doctors would have seen this on our scans if this were the case and warned us.  

 

For example, my mother in law heard a funny sound in her ear and finally an intern ordered a MRI and they found a giant un-burst aneurysm.  She had it clipped and never had a bleed, but she has to be monitored for others.  Most people just find out when they have a bleed that they have extra un-burst aneurysms.  The doctors can see them on an MRI or an angiogram.

 

However, this feeling you have, we have ALL had it.  Time really is your friend, in this case.  Just keep on coming on the site for reassurance.  We've all felt that painful unknowingness.  This is what is so hard for humans to live with...we want to be sure of all things, to know.

 

When we realize we can't know everything, it throws us off because we thought we really did, at least in our own bodies.  Now that seems like it was taken from us and leaves us feeling like a tetherball without the rope or pole.

 

Then one day the rope appears, I have the pole for some things and not for others.  It is a process of finding center again and it takes lots of time.

 

Take care,

~Kris 

[Tina]

Posted on behalf of Jimble.

 

Hi I had a bleed back in September 2012 - I was a social smoker smoking mainly when I went out drinking which wasn't often - which after the bleed I quit. Like everybody else I have had my worries over the years with odd sensations in my head but have ignored and lived a normal life and find everything that I've wanted to do in life - cycle exercise etc.

 

Unfortunately July 6th this year 2016 I was loading my car with DJ equipment and I felt like someone tapped my forehead on the inside with accompanying pain - it bothered me slightly but then I felt the familiar fuzzy neck. I went to a+e and after a ct scan it was confirmed that I had had another bleed. Similar place to the last one.

 

Reading other people comments on here it is extremely rare for people that have peremesenphslic (spelling ) bleeds to have another one - according to doctor that did my angiogram I am only the 2nd person he is aware of that its happened too!

 

As for the bleed I am recovering well after angiogram everything has heeled and I have no aneurysm's - my headaches are minimal now (2 weeks on) I am very surprised how well things are going this time (and relieved )

 

Anyway the parting words from the doctor st the hospital was - you are highly unlikely to suffer another bleed !! I notice somebody on one of the comments said something about if you have another bleed - but lottery tickets!! Well I did !!

 

Let's just say I will be going back to work! Am I worried that I will have another bleed it's always on my mind as it will be yours - but as before I will just get on with things and not let it stop me from doing things I want to do.

The only precautions I've taken is I don't go on roller coasters that go upside down.

 

I found this forum very supportive last time - any strange feelings I had I asked on here and people re assured me - so ask say if you are ever unsure

best wishes 

jim

 

[ClareM]

Very interesting Jim, glad to hear you you are ok. Mine was a non-aneurysmal haemorrhage but it was not perimesencephalic. I do worry that as no cause was found, that it could happen again. I worry about straining as the hospital said I should avoid it and I keep myself relatively fit.

 

I think if someone could tell me why it happened I may not worry, saying that it is not an all consuming worry just a niggle at the back of my mind.

 

Good luck for the future and with those lottery tickets!

 

Clare xx

[lynseylou]

Hi I had a NASAH in January, they say was due to high blood pressure so finally  put  me on tablets.  My tablets have been working as BP is stable  and headaches better but my anxiety is through the roof. The last few weeks I've had tingling  in hands and I'm worried. 

[ClareM]

Hi Lynseylou welcome to BTG. Sorry to hear about your SAH have you thought about putting an intro in the Introduce Yourself forum? It’s good to hear individual stories and you may get more response there. 
 

It is extremely unlikely for people to have 2 bleeds, that said it does happen. However you are on BP medication now which I hope should reduce that risk.

The tingling may be a side effect of the new medication, maybe you need to have a chat with your GP. They can check things and give you reassurance. 
 

I know it’s hard to see a GP nowadays so if that proves difficult maybe a chat with the nurses at the team that treated you? 

 

Anxiety is very common post SAH, I suffered and found talking to my Neuropsychologist really helpful. Don’t be scared to reach out for help, you’ve suffered a life changing event. Let us know how you get on. 
 

Clare xx

[lynseylou]

Thank you so much for reply.  As you can imagine stressful time a week before Christmas with 2 boys. Scared in case I have to go into hospital. If still there I will go after Xmas, bit scared it is happening again. Why am I tingling ?  I feel like i'm going  to collapse, it's coming up a year on the 4th January and still getting tests. 

[Tina]

Lynseylou i have also replied to your post in the Introduce yourself section.

 

Christmas is always very stressful, plus coming up for a year it's going to be on your mind. It can all be very overwhelming. As Clare has said, please contact your Doctor, nurse, chemist,  just for peace of mind. Try to pace yourself as much as possible. Maybe you could ask family or friends to help you a little as struggling and feeling so poorly ? 

 

Take good care

Tina xx

[lynseylou]

Thank you I'm just worried about this tingling  is it going happen again what's chances of been fine for the year then happen again my anxiety stress so bad scared

[ClareM]

Hi Lynsey just out of interest what blood pressure medication are you on? I’m a pharmacy tech and could ask one of the pharmacist s I work with if tingling is a side effect. 
 

I am sure stress and anxiety aren’t helping either. Just try to keep in mind the chances of this happening again are extremely small. 
 

Clare xx

[lynseylou]

Hi that would be great I'm on candestartan on 28mg 

[ClareM]

That does seem like a high dose of Candesartan. I really think you should give your GP a call. It may be that’s what you need but I’d certainly get it checked out. Do it before Christmas Lynsey just in case it can help at all. 
Although I am  a healthcare professional I’m not qualified to give advice so please call your doctor and ask them xx 

 

clare xx

[lynseylou]

It was my neurologist  that gave me that dose going up.in 4mg each month do u think.thats a bad dose 

[ClareM]

I can’t say that, you need to speak to your GP. Sorry can’t help more xx