Opinions needed

[William]

Hey all. New on here so go easy on me 😁

 

Long story short: 2014 - I was diagnosed as having a Non-Aneurysm SAH. The onset symptoms were a so severe that my GP thought I'd had a full-on stroke. 

 

I got a shooting pain in the back of my neck and was unable to turn my head without it being excruciating. Initially I felt like it was a muscle spasm but then the classic thunderclap headache and offset gait snuck up on me. The hospital I went to were perplexed at first. I had a CT scan followed by an MRI and then a spinal tap/lumber puncture.

 

I was discharged after a week and told to report back with any immediate symptoms. In the weeks following, I saw an ophthalmologist for double vision and hearing loss on my right side. Then, six months later I was sitting at home an experienced a severe dizzy spell (much like a sudden vertigo onset). I (stupidly) chalked it up to exactly that and went to bed. Woke up after sleeping 16 hours feeling no better. My wife took me to hospital and they immediately admitted me in the same way as before.

 

After another MRI, I met with a neurologist. He told me that the MRI results identified a cerebrovascular issue and that my brain was not adequately getting the right balance of blood/oxygen. I was prescribed verapamil for daily use. 

 

Fast forward to 2019, I recently saw a new neurologist for a checkup. My primary issue of late has been significant short term memory loss. They have referred me to a neuro psychologist to get this assessed. Other than that, the medication I use helps combat the following:

 

- Sudden headaches that begin behind my eyes with aura (much like an ocular migraine) 

- Pain in my ears and an echoing in my hearing

- Speech disruption

 

The speech disruption has me  very confused. I will be speaking normally (usually when trying to explain something) - For example:

 

"The weather this weekend is supposed to be bright and sunny" 

 

But instead: "The weather this benefit will be bright and sunny"

 

This seems to happen a lot more these days. The word confusion is worrying for sure, tied in with memory loss. 

 

Anyone else on here have a similar experience? I am yet to find anyone else with such complicated (and ongoing) pathology..

 

Thanks folks!

 

 

[Winb143]

Hi William 

 

I had an SAH 4 and was out for a while ..I went home as hospital said I'll never be the same ..I didn't even remember a thing about it !!

 

I knew what was going on when I awoke in hospital after shunt for hydrocephalus  was fitted ..This was in 2009 fast forward to 2010 as that's when I woke up for real.   as scared the next step was death for me ..meanwhile my Daughter found this site. 

 

It was a Godsend for me as I saw people on here who laughed and joked so I knew there was a life after SAH/Bleed.   Now fast forward to now I am deaf in right ear also and although I laugh it is getting to me Grrrr.  Echo sounding in ear been to Audiologist and he put a tight earphone on my shunt and I told him it was hurting my shunt. He had never heard of SAH or knew nothing about shunts filled me with confidence  Not !!

 

Good luck and any problem shared does help us as I know once I woke up hubby wasn't as nice as he had been lol ..But he was there for me the time I was in Deep trouble with bleed.and other problems ...Welcome Survivor xxxx  We are all Survivors good and bad days xxx

 

Can walk 800 yards then back goes but after being told I'd never walk it is all a bonus xxx Speak Up lol 

 

 

[Macca]

Hi William,

 

Welcome to BTG.

 

Casey raises a good point. Tiredness is usually a factor when this happens.  Good rest is as important as good work and play.  Also keep hydrated, lack of which seems to be a common contributor to headaches as is well documented on this site..

 

For sure your doctors are the ones to ask to check things out and provide reassurance. Not everything is linked to SAH but it tends to unfairly get the blame in a lot of cases!  However it sounds like your diagnosis has been a bit vague from the way you write about it.

 

So get checked out properly.

 

Short term memory is a common problem but there are ways to combat it, ie by repetition until it becomes a long term memory, writing things down and so on.

 

However, the bottom line is to get yourself to a specialist to check you out.  A general practitioner, no disrespect, is not enough - they rarely know enough about brain injuries to give an accurate, or in some cases, the right diagnosis.

 

So go and get checked and let us know how you get on.  Better to be safe than sorry. Don't be shy about it, there is a problem you have identified and someone needs to do something about it.  Your mission is to get to see the right person that can give you the right tests and information.

 

This is your life we are talking about so don't put it off, get it dealt with, and by the way, well done for opening up about it! 

 

Now it can be dealt with!  Always here if you want to discuss more - but we can't give medical advice, for a very good reason - we are not qualified - so go and see the people that are - your doctors.

 

Please let us know how you get on.  Good man WIlliam!

 

Regards 

 

Macca

[Catwoman23]

Welcome to the site. We cannot give you med advice but you ll see many helpful threads.

you should also see neuro ophthalmologist. Good luck.

[V.Mama]

Hello William

 

It sounds like you are having a very rough time.  I hope you find the right specialist to give you some answers, and yes, like Macca says, it needs to be someone with specialist Neurology training.  Keep going until you get what you need.  May I ask, what country are you in?  

 

Veronica

[iola]

Hi,

 

I am a little late responding but I know all too well about the pan in the neck and terrifying feeling I was going to be paralyzed.  The headache was, as we all know, ungodly excruciating.  My pain after six years still starts in my eyes.  They always feel strained.    I notice when I am really tired I studder.  So frustrating but I just tell people I have to start over. 

 

I still get my yearly MRI and still notice wierdness sometimes, like the other day I felt like I had water in my ears and it was like waves just moving back and forth in my head.  Don't remember having that before.  Does not scare me like it used to.  

 

I deal with with the head heaviness and go on with my day.   Hope yours is better.

 

iola

 

[Patc]

Hi, and welcome!

 

This is quite the journey you have embarked on!  You are on the right track.  I had my « episode » like I like to call it, almost 3 years ago. Still  dealing with head fuzziness, memory problems and word retrieval.  It can be frustrating at times, but like previously mentioned, these things happen more frequently when I am tired.

 

I am lucky that I don’t have the terrible headaches people talk about.  As a matter of fact, I can’t remember having the « thunderclap » headache 🤕 

 

Let us know how you are getting along.  Remember this is a community filled with helpful people, ready and willing to listen..

 

You are not alone!!!

Best Wishes,

Pat