Non Aneurysm SAH

[PatrickK]

Excellent di!

 

I'm glad i could be useful. Other people have no idea what it's like. Even most in the medical field don't know. They think you had it, you didn't have an aneurysm, it stopped bleeding, you rest up for a few weeks then you're OK again. I WISH ! and i HOPE it is like that for most people)!

 

I'll bet a stroke victim (depending on their stroke and the person of course) would GET our situation more. They're probably our closest commonly encountered brethren in the brain injury followup club.

I found i had to sort of worry less what people thought because of this very thing.

 

I know what my body/brain/system is doing, and the more i listen to its inclinations, the better i feel. and if i feel 'not up to anything' the CORRECT answer is probably to just rest. You don't want to use the SAH as an excuse to stop living, but it was a CRAZY horrible thing to have happen, and you're allowed to be left shaky because of that.

 

But yeah, in general, over-thinking things OFTEN gets people into trouble. But in general, they say that the odds of an SAH like this ever happening again are astronomically minisculishly tiny.

 

Cheers,

Pat

[Mollynjosie]

Dear Andy p

 

I'm a newbie on this forum you can read my story mollynjosie.

 

I'm like you I had my sah and to this day , life in the past I had has gone and some days it's hard to go on. Before the SAH I suffered depression it was in control but now it's like a big wave and when I get dumped it's not good. I keep asking myself why me and no one can give me answers,the neurological specialists tell me it's time.

 

Ok that's hard when I had the bleed in 010 it's now 011 and I feel Im getting worse. The stroke has left me with memory issues and my right leg drags along as my leg feels heavy. I've had physio to no avail and the tiredness is terrible if I go to the shops, grocery or clothes shopping I feel warn out within 5 min and I have to sit down.

 

I tried a walking stick to hold me up but I still got tired my physio has suggested a Zimmer frame ( what the elderly use) I'm sure a 37 yr old would really like to use a four wheel frame but maybe it's come to that.

Any way in here your not alone.

Take care.

[Melissa]

Hello everyone,

 

 I am coming up in on my third year of the life changing SAH ( June 28, 2016) I did not have to have surgery or stent. Was in ICU for 4 days and 7th floor for 11 in which I really don't remember very much of anything. Except that I had a Bleeding Stroke. Thank God I had a wonderful ICU nurse to write down some information for me to look up once I felt better. It took me 11 months and a great Neuro doctor to get back to work. He would not release me to go back until he felt like I could handle it.

 

However the biggest thing he has said is that I am one of the lucky ones and that once I understand that the old Melissa is gone and except the new Melissa life would be a little easier. ( At the time it upset me because as with most people on here you can not see that I was ever sick)  BTW I'm from North Carolina where I can not find any support groups with SAH so this site has been a true blessing for me ❤️

 

However since about Jan 1017 I took his advice and I try not to focus on what I can't remember and be THANKFUL that I am here to make new memories. Youngest daughter finished high school and I have a grandson now.☺️

 

However I am having some problems  with still not having the energy to do the things I love to do ( work outside in flower bed - hike-take long walks) and some day I still have this weird feeling that I have no control over this and this mainly happens when I'm tired or stressed. But it scares me to a point I'm afraid it will happen again. 

 

Have some pain in the area of the bleed which really scares me .

 

Some days I have a hard time making my thoughts come out of my mouth the correct way. I would have hoped by this time into recovery I would not be having these problems.

 

Sorry its so long but I'm hoping someone else out there is like me and can give me some feed back.

 

Thank you so much for reading and any feed back will be greatly appreciated,

Melissa  

[ClareM]

Hi Melissa, 

 

when I read your post I saw myself....

 

I am 4 years post bleed and often find myself struggling to come to terms with everything.

 

Fatigue and memory are still my main problems and nobody understands that. I had an excellent memory pre Sah so I feel it all the more now. People say ‘ oh your memory is fine - I have problems too it’s just we are getting older’ But that’s not it for me, I’m different now and so is my memory. 

 

For me it’s also the mental fatigue, I can cope physically as I run 5 miles several tines a week. But I can only work four 7.5 hour days. Work can floor me mentally so maybe you are pushing yourself too much there. 

 

What do you do for work and how many hours? Maybe that is draining you more than you realise. I find if work has been stressful or busy that I ‘lose’ words or get them jumbled. I think it is a common trait post bleed. 

 

Yes we we all look fine from afar but many of us are far from fine! And sometimes I wish I could turn the clock back - but it’s not going to happen so it’s all about acceptance. That can be hard, I know only too well so I understand how you feel. 

 

You aren't alone, we here on BTG are testament to that 😀

[Louise]

Melissa 

 

Your post makes perfect sence to me - I could have written parts of it myself.

 

The memory and fatigue are definatly challenges but its a challenge I've been up for (though on the tough days I do wonder) but those lessen a lot with time...

 

You are definitely NOT alone we all know, we all understand...

[Melissa]

Hey ClareM and Louise,

 

Thank you both for letting me know that I am not alone.

 

ClareM I am Staff Assistant for a small Community College in my home town in which I work 38 hours a week. Yes I too get my words all tangled up if I get the least bit stressed. However I do have a super boss and she can see when I am having a hard day and will tell me to go for a walk and relax or let me take a long lunch. She has even sent me home just because she knows that I have had a long week.

 

I try my best to built up my strength but by Thursday I do good to make it through the day and just collapse when I get home.

I think my hardest thing to deal with is not remembering some of the past and also I have a hard time remembering the day to day information which seems to aggravate the family more. I can't explain it to them and all they can see is how much I have improved. 

 

I have also started to have a lot of mood swings that I can't seem to control anymore either.

 

I was really hoping that I would be more like myself by now and have things under control better. 

Thanks for letting me vent I am very thankful my life is no worse than it is and I know I don't sound like it but I truly am Blessed.

 

Hope everyone has a great day.

Melissa

 

  

[ClareM]

Hi Melissa

 

Have you ever considered reducing your hours? Is this possible or not viable financially?

 

I used to work over 40 hours a week and have gradually reduced since my bleed to 30 hours. I do those hours over 4 days with a midweek break, having Wednesdays off. I find this works perfectly for me - I can't imagine ever working full time again. It may not be that your work can accommodate this or as I said it may not be possible salary wise. It's really worth thinking about it though, one of the best things I did.

 

Without giving medical advice it is possible that the fatigue you are suffering is causing your mood drop, so think about more rest and taking time out. Sounds like you have a great supportive boss.

 

I hope you start to feel a little more like yourself but remember it is a new you.

 

Clare xx

[Macca]

Ah Melissa,

 

Fatigue and memory issues (particularly short term memory). these are old favourites of SAH consequences that take a lot of explaining to others, the main problem being that others cannot see the problem therefore they think it doesn't exist!

 

it's like looking at a car, trying to get in and start the engine and then realising it's broken down because there's something wrong with the engine!

 

There is no one easy answer to this. It all takes time, time and more time.  it will possibly get better but will not likely recover to its pre-SAH best.

 

I find keeping a diary helps - just bullet points, to help you remember.  Take regular breaks, even if only for ten minutes to clear your head, stay hydrated and do what you can  - not necessarily what others want you to do.

 

When you feel up to it, sit down with pen and paper and write down the things you do in your job. Consider the following:

 

Can you organise yourself better?

Can you organise your job, and individual tasks, better? Ie what you have to do (mandatory), what you could do (necessary but not urgent), what you want to do (luxury, dressing items that would be nice to do but are not essential)

Can you delegate anything to others?

 

Can you change the timing of any tasks to when you feel better able to deal with them? (ie in the morning when concentration is best, or when a specialist is in the building that you can ask questions of if needed)

Can you make use of a 'dictaphone' to record things you need to do later or remind yourself of?

Can you get a PA to help you at all?

 

Not an exhaustive list, but just pointers to help you.

 

As for mood swings they will be helped by feeling more under control of the things that you can influence. Strain comes from things you cannot influence, so concentrate on the former.  That is the benefit of what I have just outlined above for you.  It might not be the whole answer but I am sure it will help to a degree.

 

Don't bottle things up, talk to people and keep reminding them that though you are improving there are still hurdles to overcome.  Keep communicating with people.  problems are best nipped in the bud, not when they become too big to handle.  what you must guard against at work though is that you don't overdo it to the point where they think you aren't coping at all.

 

What you will demonstrate by doing some of the things I outline is that you are doing your best to help yourself and that you are managing things as well as you can.  Managers are always prepared to help those who are seen to be doing their best and are not just waiting for the benefactor's hand to lift them.

 

Good luck!

 

Macca

[Melissa]

Hi ClareM

 

I can't reduce my hours due to the fact of my insurance and financial needs. 

Yes my boss is very supportive and I'm thankful for that.

 

I am thinking about visiting my Nero doctor and discussing this with him.  Along with some smaller item ...lower back pain and vision change again.

I was just hoping this far out I would be back on track or at least lined up right on a new track.

 

Thanks for the support  its nice to talk to someone else that have and are having the same issues and its amazing it world wide. My location is North Carolina

 

Melissa

[Melissa]

Hi Macca,

 

Thank you for the outline . I do some of the items you listed but you have showed me a lot more to try

 

I try my best to not bottle things up but some days I feel like I'm a broke record with the same ole story.

This site has been a huge help to me and I am so thankful i found it.

I just wished that I could find a face to face support group.

 

Thanks again and have a great day,

Melissa

[Swishy]

Hi Melissa,

 

I had my SAH just 2 years ago now.  I also had a severe vasospasm just a few days later.  No stent, no surgery but did have a angio that put verapamil into the vessels in my head to help stop the vasospasm.  

 

I also have energy problems, making frequent stop and sit periods while trying to accomplish a task. If I don't allow myself time to rest I end up in a bit of a state feeling mixed up and anxious.  I try to recognize when I need it but sometimes life just moves too fast.

 

Looking at the bright things in life is so positive, your daughter graduating and a grandchild...congrats

The lingering effects of SAH is so difficult, but we are so fortunate.  

 

Melissa I struggled with not remembering what happened to me, I still do.  I kept thinking I would remember but now after 2 years I know that is not going to happen.  I keep thinking I should be glad not to remember, perhaps it is a gift that I don't.

 

Best wishes Melissa,

Jean  

 

 

[Patc]

Hi Melissa,

 

I had my bleed 2.5 years ago (Oct. 2016). I don’t remember much either, and it truly drives me crazy.  I’m slowly learning to let it go, but it is hard🤪. I was in the hospital for one month- 26 of those days in a “quiet” room.  No stimuli whatsoever ( no lights, no reading, t.v. and was only allowed to get up to go to the bathroom, after 2 weeks)

 

I also ended up with vasospasms, but had no idea what that was.  It wasn’t until I was at home and reflected on what could have happened to me, that the anxiety kicked in full force. That is when, by the grace of God, I stumbled on this site.  I found out I wasn’t imagining my symptoms, and I wasn’t alone💕

 

I’m still having memory lapses, difficulty retrieving words, fatigue and I think that is my reality now.....but I am alive to experience these things.  I have had to redefine my career ( preschool teacher/ special needs support worker-36 years) still working with preschoolers, but in a different capacity and less hours.

 

At the end of the day, know that we all “get it”. There is immense support here, because we have all walked in each others’ shoes😉.   I am looking for a therapist, to deal with some of this anxiety and I really feel that part of our medical treatment should have a mental health component to it.  

 

Sending you big hugs, 

Pat

[Melissa]

THANK YOU all for reaching back out to me. It is nice and very encouraging to know that I am not alone in this day to day life change.

 ❤️

 

[Gaynor1071]

Hi Melissa

 

I'm 7 years post SAH-NA. 12th July is still a day of mixed emotions for me but I try to focus on the positives. My support nurse told me in 2013 that how I was in 10 years would be it for life. To be honest, I thought that was horrendous at the time but now I'll take that.  I still get tired, forget names, am clumsy and panic at any sharp pain in my head.

 

Looking back I realise that it did take a long time to get to where I am. Bizarrely I'm 'happy' that it happened as I have changed a lot of things about my life.  Learning to say that I'm not up to something was difficult at first but I realise now that it's not worth putting yourself in a position where you are knackered just to make someone else happy.

I hope that makes sense.

 

Look after yourself. X