Jump to content
Search In
  • More options...
Find results that contain...
Find results in...

Hello!

By registering with us, you'll be able to view our forums in full as well as discuss, share and private message other members of Behind The Gray. Why not join us now?
Sign in to follow this  
Kjarva

Hey I'm Claire and I'm just over a month out after having a SAH

Recommended Posts

Hey everyone,

 

I'd like to introduce myself! I'm Claire, I'm 36 years old and unfortunately on the 22nd of November I had an undiagnosed Berry Aneurysm rupture causing a subarachnoid haemorrhage. If things had worked out a little bit differently, I likely would have been dead. My fiancée is a doctor and happened to be home on a rare day off on the morning it happened.

 

I'd just come out of the shower and as soon as I left the bathroom, a headache hit the likes of which I have never experienced before. If he hadn't have been home, I likely would have put it down to a migraine, crawled into my bed and never woken up. Fortunately he was home and heard me screaming in pain from downstairs. He came up to investigate and got me to lie down.

 

I don't remember much past that. He said I was getting paler and paler, became increasingly confused and then started seizing. Fortunately it wasn't a full seizure, it was a partial seizure down my right side. I came in and out of consciousness a few times; once when the ambulance men arrived and once when we first arrived at the hospital but that was about it for a week. Apparently I looked awake and was speaking to people the first week in the hospital but I only have tiny fragments of that week in my memory.

 

I had to get a lumbar puncture twice in two weeks because the pressure in my brain went up and I became so confused I wasn't making sense at all. After each lumbar puncture it was like I woke up mid sentence and could only remember the last 30 seconds or so of what I had been saying. My right leg was also paralysed the first few days but I was mostly so out of it I couldn't really work up the proper level of concern. It was a category 4 bleed that I had which I understand to be really, really bad however I seem to have escaped with remarkably little permanent damage.

 

I'm now home (thankfully) and finding I'm having more good days than bad. I got home on Monday last week and I mostly slept a lot that first week. On Saturday, even though the doctors had tried to prepare me for the frustration I may face, I had a complete and utter meltdown at my family. Our routine on Saturday morning is to get up, tidy the house and just generally make the place presentable.

 

After 30 mins of tidying I was absolutely shattered. Instead of behaving like a reasonable adult and saying i had to go for a lie down because it had taken it right out of me, I had what I can only describe as a 20 minute toddler rage / crying meltdown because I was so frustrated that I was tired after just 30 mins and couldn't help more. I was completely shocked at the level of frustration that hit and I don't think anything could have prepared me for it.

 

Fortunately my understanding fiancée and father in law finally calmed me down, told me not to be so silly and sent me off to bed.

 

Now just a few days later I am doing SO much better. I am managing to stay awake most of the day without a sleep, I am a freelancer so I have been able to work for a couple of hours the last few days and most brilliantly I've not had a constant headache for the last 3 days either. However I am suffering from chronic insomnia at night when I actually want to go to sleep and I am also having little blips in my memory where something may have only happened 30 mins ago but when asked about it, it's not like I forgot and the reminder jogged my memory - it's just totally gone.

 

So I'm trying to keep my memory right with my bullet journal and lists, I've got a doctors appointment booked for the start of Jan to see if they can give me anything for the insomnia. I know it will be good days and bad days but right now the fact I have more good days than bad is great.

 

As a random aside, for the last 2 years I have suffered from crippling anxiety which made me so ill at times I had panic attacks and either puked or passed out. Since the SAH it has gone. I mean it's completely gone! So my other half has theorised that possibly the growing aneurysm was pressing on part of my brain causing the anxiety and as it grew, so did the level of anxiety. Now it's gone, so has the anxiety. In a way I actually see what happened as a strange blessing in disguise because my anxiety was getting to crippling levels where I could barely function. It is such a massive relief that it is gone that I feel better than I have in a very long time.

  • Like 3

Share this post


Link to post
Share on other sites

 

Hello and a warm welcome to BTG.  Thank you for sharing your SAH story with us.

 

You are in good company... within the Forums on this site there is a wealth of personal information going back over ten years consisting of members posting their personal experiences as they have dealt with SAH and their recovery. You will find much help and support as you browse through these.

 

While we do not provide medical advice our members will try and answer any questions you have from their own experiences, and you will find it helpful knowing that you are not alone as you recover.

 

You certainly have had a traumatic time since your bleed occurred. It was so fortunate that your doctor partner was present.  In surviving you are in a minority. 

 

Now in these early days you are beginning to find out how the trauma has affected your brain. The short term memory loss, the fatigue the acting out of character and erratic display of emotions, which you mention  are all common signs experienced by our members. Your brain needs time to start healing, and everyone will stress to you that attempting to get back to `life as it was` too quickly will in fact be a hindrance to your recovery. Take lots of rest and keep well hydrated.  It is advisable that you give your brain and body a few months healing time before considering the demands of ``being back at work.  (even when you are able to work from home)

 

Well done for starting to take notes to help your memory.  It is good that you feel positive and are currently having more good days than bad days.  SAH affects everyone in a different way.  Everyone`s recovery is unique too. There will be challenges ahead for you and your family.

 

As far as the apparent relief from the crippling anxiety you felt prior to your SAH... I am sure your own consultant and doctor will offer you their thoughts on why this may be.

 

We look forward to hearing from you as you make progress over the coming weeks and months. The site will also prove helpful to your partner depending on his current knowledge of SAH. 

 

 

 

Subs

 

 

 

  • Like 4

Share this post


Link to post
Share on other sites

Hi Kjarva

 

Welcome to BTG , i hope you find some useful experience and reference here.

 

We share a few similarities as I was also in my thirties when I had a grade 4 but was lucky like you that I was seen promptly which definitely has helped me in my recovery since. Same feelings I had with LPs, and in fact I had a EVD placed and later had to have a shunt and every time I had a procedure where CSF pressure could drop fast it left me bewildered And absent.  I don’t relish those memories.

 

Its very early for you, I think your doing some really sensible things by tracking how you are doing, keep doing that and try and pace everything you do. Be kind to yourself. If you have a conversation, watch tv, write  then rest your brain for a while afterwards. Put pauses after every action that requires brain power. If you try that it may help you get to sleep. I found that hard to do also and it was almost like my Brain couldn’t switch off once it got going.

 

Set yourself a nighttime routine to help. No devices or tv at least an hour before. Have a hot bath or shower with a relaxing scent. Dim the lights and just relax a bit . Read a book if that helps and then try sleeping and if you do wake up get up for a bit, have a drink of water. You might also like to try sleeping upright a bit more If you can get a v cushion.

 

The lapses of short term memory is not uncommon. My treating hospital explained this that the process by which we retain short term memory can get corrupted, it’s something a lot of SAH survivors report. So it seems not that we don’t remember it but we file it incorrectly . It can Be simple things like there is background noise, or two people are talking or we are just tired and then our brain doesn’t open the memory filing cabinet properly and instead just drops it on the floor.

 

I still have deficits of this kind but have learnt how to better remind myself. You can try repeating something back to someone to check understanding. Write post it notes to prompt actions and meetings. Use your phone to set alerts. But even so it still happens, now we laugh as a family but we didn’t at first. 

 

Take care. Baby steps now. And well done to fiancé. Thank goodness he was home that day 

 

 

  • Like 3

Share this post


Link to post
Share on other sites

Hi there

 

Warm welcome glad you found the site.

 

Well don't need to say listen to your body you know that one I see...  have to say been there done the meltdown/frustration its all a learning curve. 

 

keep well hydrated it helps a lot.

 

hope the site helps we've all been there...

  • Like 4

Share this post


Link to post
Share on other sites

Hi Claire,

 

Welcome to BTG!

 

Your brain is currently re-wiring itself!  Getting some things wrong and some things right!  It isn't that unusual to experience what you are going through right now.  Tiredness is common as are the emotional ups and downs.

 

You are one of the lucky ones!  You are a survivor.

 

Stress has long been suspected of being a prime factor in causing SAH's but no-one know for sure because stress in all of us is different and you can't measure it.  It is an individual thing and its levels and effects are different due to our differing tolerances.

 

Take things slowly and give your body time to heal. If you go too fast it will soon let you know and it may set you back a bit.  So be kind to yourself and those around you.

 

Keeping a diary is a great idea and is good to measure your progress over time.

 

Good luck!

 

Macca

  • Like 4

Share this post


Link to post
Share on other sites

Hi Claire :)

 

A very warm welcome to BTG,

 

Some great replies with great advice. You will find lots of helpful information here and friendly caring support.

Look forward to hearing how you are doing with your recovery.

 

Take care

Tina xx

  • Like 1

Share this post


Link to post
Share on other sites

Natural to panic Claire but singing helps me more and happy thoughts.

 

Stress is a no no my Surgeon said so hence my singing and thinking only of happier times xx

 

Another is to be selfish for a while ie do not listen to others worries while you are getting better.

 

Be well and remember we are survivors xx All what others have put also xxxx 

 

Good luck xxx 

 

Win xx 

  • Like 2

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Sign in to follow this  

×
×
  • Create New...