Confused

[JoJoC]

First of all, I feel like an imposter here as mine seems minor comapared to many stories I have read.

 

 Where do I start? The day it happened was a very normal day. I was feeling great. I started the day at the gym and had a good day at work.

 

I got home from work and was bringing my bags in the house when I suddenly got the most intense horrible headache of my entire life. I got upstairs took a few Advil, started to lay on the bed, but decided I wanted to be downstairs when my husband and the kids got home so I could tell them. (Mostly, I was thinking I didn’t want to have to yell down the stairs when I had this awful headache.) 

 

A few minutes later, I had grabbed a pillow and laid down on the playroom floor as I heard the garage door opening. The kids came up and then got my husband. 

 

They rushed me to the emergency room where they did a CT, determined I had blood around my brain and put me in an ambulance to a different hospital with a Neuro ICU.

 

Once there, I had another CT w/ contrast to see if they could see an aneurysm, but there was none. So, they settled me in the room for the night and then, the next morning they took me for a cerebral angiogram and still found nothing.

 

My diagnosis was a subarachnoid Hemorrhage and I was monitored for a week in the ICU for stroke. After 7 days and a MRI/MRA, I was released from the ICU.

 

A day later, I was released from the hospital without answers. There was a vague mention from the neuro surgeon a few days earlier about maybe a capillary burst. He had also mentioned my limitations when I was released, one of which was no yoga. Yoga is what keeps me sane (and the mildest of my workouts) This kind of shocked and scared of me, but he said we would talk more about it before I left.

 

However, on the day I was released, I did not talk to neuro and when I called their office, I was told I did not need a follow up. I was pretty much dismissed by them. On the one hand, this feels positive to me, it means there is no immediate/critical concern. On the other hand, I have a lot of questions that were left unanswered.

 

I was home another week and half and then I went back to work. I have been back to work for 2 weeks, I am feeling pretty good, but getting tired and I still have headaches. I just want the back to where I was. I am 42 and I was extremely active before this happened. I worked out pretty hardcore 6 days a week.

 

I just feel so blah and just wonder when/if I will feel “normal” again.

[Winb143]

Hi JoJo,

 

Sounds like you had a lucky escape !!  A lot of us have said they discharge us and we have to get on with our lives which is hard to do.

 

This is where we need sites like BTG and it does help xx

 

I was told no stress well to be honest life is full of stress, so I try and think happy thoughts and sing a lot, my poor Family !!

 

I have short term memory loss and my hubby gets fed up saying " told you that Win" ha ha 

 

Good luck and rest when you feel you need it, or take longer breaks.  Welcome to BTG xxxx 

[Swishy]

Hi Jo jo,

 

Welcome to BTG...Sorry to hear of your terrible experience...happy to hear you seem to be getting on with your life.  I had a SAH for which no cause was found...few days later had a vasospasm.  I was in regular bed for 3 days went home then a week in intensive care.  

 

I think you are not alone in feeling like after discharge you were on your own.  I too was given a 6 month appointment after my SAH, I couldn't believe it but ended up back in the ER in 2 days.

 

My thing was I needed to understand this thing and understand what happened to me.  I am able to read all my medical records on line and I ever so slowly read every test, every MRI scan result...But...I still needed something more I needed to talk to people who understood how I was feeling, understood the unseen symptoms I have.  So I luckily found BTG, I hope you find this site as helpful as I do.

 

I now am at 1!/2 years out and at my 1year appointment was discharged from my Neuro...was thinking he would bring me back at 2 years but was left with "call if you need us"  well getting into Mass General Hospital in Boston without coming by ambulance is a long wait.  So I am counting on my general doctor to keep eye on me. 

 

My best wishes as you continue to recover and please know you are doing a fabulous job recovering.  The brain is slow to recover, be patient with yourself and ask others to be patient also.

We are here for you,

 

Jean

[JoJoC]

Thank you both, I am still having trouble wrapping my head around what happened. After posting the other night, I looked around BTG a bit more. It is comforting to know that I am not alone.

[Swishy]

JoJo

I am still wrapping my head around it as well.  It doesn't seem to come all at once, and sometimes I think I have it and it gets away from me again.  Trust me you are not alone, there are so many people here with so much inspiration and strength to share.  You have found a friend

Jean

[Vicky.W]

Jo Jo, I was discharged after five days. No info, no advice. Still have vile headache, so tired, anxious. No answers.  

[Winb143]

When you feel stressed out, try and relax hard but think happy thoughts and times.

 

I laugh to myself !! God knows what hubby thinks  lol xx 

 

We will make it with a little help from our friendsssss song there xxxx

[Patc]

Hi Jojo - Welcome!  I am 2 years post SAH, and I’m still trying to piece things together.  I wasn’t given much information when I was discharged after being in the hospital for 1 month.  I developed vasospasms, and spent the month in a “quiet room” - basically no stimuli at all.  

 

Once i I began my recovery at home,  I started questioning why?  I began doing my own research, but still had many questions unanswered.  I’m slowly working through some stuff, and decided to see a therapist.  I am no longer under my neurologist’s care, and my GP can only do so much for my anxiety.  

 

I listen to my brain, when it lets me know I am tired, then I nap - or take time for myself.  I am basically dealing with fatigue and some memory/processing issues. Nothing that anybody else would notice, but I know the difference. I returned to work 5 mos after my bleed, on a reduced schedule.  I have since modified my work situation even more.

 

You will find this site to be a god send.  We have all “been there” and understand each other’s anxieties, fears, frustrations, but also the gratitude we have for recovering from our bleeds.  Life may be altered somewhat, but we are here to enjoy it!

Wishing  you all the best in your recovery?

[JoJoC]

Vicky, when did you have yours? The lack of info is frustrating, but it is comforting to know I am not alone.

18 hours ago, Vicky.W said:

Jo Jo, I was discharged after five days. No info, no advice. Still have vile headache, so tired, anxious. No answers.  

 

[ClareM]

JoJo going back to your question when will I feel normal again? You will feel normal again at some point but it will be a new normal and will take some time for you to get used to it. My bleed was over 3.5 years ago and I think I have reached my 'new normal' though I still have days when I am floored - usually after doing too much.

 

Check with your neuro unit and Gp and you should be able to get back to exercise soon. I do wonder if you have gone back to work too early. Most people have a minimum of 3 months off after a SAH then phase back slowly. Make sure you take it slowly and if it gets too much take time out to recover, don't just plough on as you will probably make your fatigue worse.

 

I have got back to exercise and find it is a stress buster now, so hopefully you can get back to that soon and begin to reach your 'new normal'.

Good luck!

 

Clare xx

[Chris G]

Welcome Jojo.  You are not an impostor here.  A lot of us have had bleeds that are minor compared to some of the rest.  But as I am often reminded, a bleed is a bleed.  You are a survivor among survivors!

 

Some points that may help:

• NASAHs often have no underlying cause.  This makes it hard to accept that it will not occur again.  But statistically, I was told, unless there is a cause found, the odds it happening again are no greater than the first time.
• Getting on with your life can be scary at first, but it will get better
• There may be long-term affects.  I and a lot of us still have headaches more often, memory problems, maybe some eyesight problems.  You did go through a traumatic experience
• You injury is not visible, so don't expect others to understand all of the time. 
• Follow up, for some reason, is not great for a lot of us from doctors.  However, the support and information on this site is invaluable.
• Sending prayers,

 

Chris

[Swishy]

Hi Chris,

 

Wow what great encouragement/information...I wish someone would have given me a piece of paper with those words on it when I left the hospital. I am also in the USA..Boston..

 

Thank you 

Jean

[Crazy]

Hey Jojo,

 

As was previously stated, you are not an impostor. All of us recover differently. We all still had a bleed tho! Your experience sounds similar to mine so I can understand why you feel like that. I would run up to 130kms a week in training for ultramarathons and I am 45 so it sounds similar.

 

I had mine 14 weeks ago today and seem to have made a full recovery. A few little niggles here and there but a lot better than a lot of people that are still suffering. Stay positive. I reckon that was the key. A few days after it happened, when I was starting to be able to think straight I worked out what I had to be grateful for and it was a lot.

 

I was unsure if I would be able to run again but made peace with that. Luckily enough, I’m now killing it again and heading back towards where I was at 14 weeks ago. Find out all you can about your condition. I now know so much about the brain I just had no idea about previously.

 

My journey started here at BTG. This community is full of wonderful people and is a real godsend. You will get there mate. There will be ups and downs but just stick at it. You’ll be back as fit as a fiddle before you know it!

 

All the best,

 

Dave

[iola]

Hi,

 

Mine was five years ago and like you I was hardcore everything.  Maybe that's what led up to my bleed but my neuro surgeon told me most likely had a weakened vein since birth.    I did go back to see my dr six months later cause I wanted answers.  He did tell me that I was a different person and it would take a year or more to feel better and it was true.  I still have headaches and some days I just have to lay down.    It's hard at times but it is what it is now and I push forward always.  You will too.  

 

 

I worked in my yard today and will get on my computer this evening to check work emails.  Just finished homework with my daughter.  I hate 8th grade homework.   And, I'll start over again tomorrow.  Thank god for tomorrow, it will all get done tomorrow.?

 

iola.   

 

 

[Macca]

Hi JoJo,

 

Like Clare says, you will become accustomed to a new you over time.  You will find lots of the old you in the new you, it just takes a bit of time to recognise it and accept that what has happened has happened and none of us can turn the clock back.

 

However we can shape the future.

 

You say you did things hardcore - well now you may have to do things lighter-core but do it for a bit longer and bit slower, whatever your body will accept.  it has a way of telling you when you've had enough, so learn to listen to it and accept its new boundaries.  You won't be better or worse, just different.

 

You just have to be a bit more flexible in what you do.  Change occurs in all our lives, but most of it happens gradually  over a period of time.  You've just had it thrust upon you rather abruptly, and it takes a bit of time for you to re-adjust.

 

When you get a bit of time to yourself, get a pen and paper (remember them?) and sit down and go through your daily routines and see what you can get rid of, what you can do differently, what you can delegate, and so forth. You'll be amazed at what you can come up with.

 

Do things a little more moderately and create the space to do things for yourself and your family, and get them to do a few more things for you.  It just takes a little time and planning and some proper discussions with those around you - it can be done.

 

If you leave things as they are, life will be more difficult than it need be, so change it and it will improve your health, your mood and your state of mind. That in turn will rub off on those around you and everyone's a winner!

 

As the Spaniards (and Iola above, it seems) say, manana, manana (tomorrow, tomorrow). Lots of good advice above, pick out what you need and be positive about it.  Don't be afraid of change, it's what makes you resilient!

 

Good luck,

 

Macca

[JoJoC]

Thank you all for all the words of encouragement and advice. I am so glad I found this board. I probably did go back to work too early, but I am not good at being idle... haha. I have a great team though and have been able to ease in. I have started speed walking around the park, and even ran a tiny bit last week.

 

I am just taking is slow and listening to my body. I really appreciate everything you have to say, I am taking it one day at a time and trying to enjoy the little things.