NASAH in California ... I'm new here

[Rory]

Hello, I live in Oakland, California, USA. I had a NASAH on December 23, spent 5 days in the hospital with excellent care, and then sent home with minimal information.

 

I'm so glad I discovered this forum--I'm having on-going symptoms that have freaked me out a bit, but reading through some of these posts, I see it's all to be expected and shared by other NASAH folks.

 

This is also helping manage my expectations in terms of how long they'll go on for--the doctors really made it seem like I'd be back to my baseline within 6 weeks.

 

With me, it's like I improved 75% in the first couple of weeks after discharge, but this last 25% of symptoms--headache and fatigue, mostly-- is just stubbornly sticking around.

 

I'm 59, and pretty healthy. The NASAH occurred when I was riding my bike up a steep hill--something I do -- or at least did -- all the time. I think I'll just ride the flat roads for the time being.

 

From what I'm reading, I seem to have not gotten a terrible case of it--I was back at work a couple of weeks after the incident, though I'm lucky that I have been completely working at home for the last year.

 

I'm taking more Tylenol than I used to, but getting the work done. A follow up MRI from last week didn't reveal any big problems. Anyways, that's it--just wanted to introduce myself, and I look forward to learning more and sharing more NASAH stories with you all!

[ClareM]

Hi Rory

welcome to BTG glad you found us and are finding the site useful. 
 

Sounds like you are making a good recovery after your NASAH glad your MRI didn’t show any other problems. 
 

Fatigue is a very common after effect of a bleed and even after 6 years I still suffer if I push too hard. You will learn when you can and can’t do things and when to take it easy. 
 

It is fortunate that you can manage your work time at home. Work was and still can be an issue for me. I struggle with concentration and have attention deficits which in turn affects my memory. It’s a case of finding your new normal and acceptance. 
 

With regard to physical fitness, like you I was exercising when I had my bleed - I was running. Since then I have got back to regular exercise and now run 5 miles at least 3 times a week with no problems. In fact running is my saviour when it comes to mental health - particularly at present with Covid! 
 

I wish you all the best with your recovery, just remember to be kind to yourself. Don’t hesitate to ask any questions too, there are plenty on here who understand 🙂
 

Clare xx

[Tina]

Hi Rory 

 

A very warm welcome to BTG,  

 

As you have found, there is a lot of very helpful information here. So many of us leave hospital with little or no information on what to expect in recovery. 

 

I also wish you all the best with your recovery and agree with all the lovely Clare has said above.

Feel free to also join in the daily banter in the Green Room.

 

https://web.behindthegray.net/forum/9-the-green-room/

 

We look forward to hearing how you are doing.

 

Take care

Tina xx

 

 

 

  

 

 

[Skippy]

Hi Rory

 

Welcome to BTG and so glad you found us - this place is truly a life saver.  As for what your Doc told you about 6 weeks - I wish they'd look at forums like this before they give unrealistic expectations.

 

You'll find a wealth of information and experience here - as well as true understanding of the journey that lays ahead of you.

 

Definitely join in the banter in the Green Room - one of the biggest saviours for me was keeping a sense of humour alongside the determination, and the Green Room is where we "meet" to have a chat and laughs.

 

Look forward to going on this journey with you  

[Louise]

Hi Rory

 

warm welcome to the site, glad that you found us....

 

Ditto what everyone has said....

[Chelle C]

Welcome to BTG,

 

You will as you have discovered find a wealth of information here, lots of people who have gone through and are going through, what you are experiencing.

 

There is always someone here who can answer any questions you may have, although we can't give medical advice as non of us are qualified to do so.

 

Try to make sure that you stay well hydrated and rest when you need to, it all helps to alleviate any headaches and helps with the fatigue.

 

I wish you well as you continue on your recovery journey, be kind to yourself.

Love

Michelle. Xx

[Rory]

Thank you for all the warm welcomes! I look forward to being part of this very unique community. Seems these things often occur during exercise--a friend of mine told me that you never hear of NASAH happening to people while sitting around watching Netflix. (He was joking, of course.)

[subzero]

 

Hello Rory, and also a warm welcome to BTG.  So glad you found the site early and as others have said, you will receive great support. In reading the various Forums, you will get a wide perspective of SAH/ NASAH and what is has meant for our many members. Over the years BTG has been a focus for several US survivors from a wide range of states. You will come across their posts as you read.  

 

Like you our members began with little help and information about what to expect, and in some way that is understandable as the effects of brain trauma are varied in severity and longevity. Damage to the brain has many different outcomes depending on the position and severity of the trauma. Some members have many, many years behind them and you will find all comments of value.

 

You mention that you feel you have regained 75% of your former self.  How you approach the remaining 25% is so important. It is perfectly understandable to want to achieve the return of your former self, but it is also wise to know that for the majority of our members the journey is about being realistic and adapting as they discover that their brain and body say `NO` ! to the direction they are taking. 

 

Having patience to accept the long term nature of any recovery is so important and while it is good to want your old self back, keep in mind that pushing the boundaries too early can have a negative effect on recovery and be psychologically upsetting when you realise that your body and brain limit where you are trying to go.

 

The fatigue and headaches you mention are common and can be distressing and debilitating should they become prolonged. As others have said, it is very early days for you and it can take several months before a better prospective of your challenges becomes apparent. Irritability and mood changes are also common as well as trying to cope with noise interference when in crowded areas. However a positive attitude and keeping away from stressful situations helps greatly in these early months. 

 

So I also wish you well on your journey and trust your close family and friends and work contacts are positive in their dealings with you.

 

 

Subs

 

 

 

 

[Rory]

Thanks, Subs! The timing of this NASAH is strangely fortuitous, given that we've been in a mandatory shelter-in-place order for almost the last year. Many of the things I used to do that would aggravate my head right now--movies, concerts, happy hours, restaurants, travel--aren't happening.

 

So there's no problem with "FOMO" (or "fear of missing out," in case you hadn't seen that one.) I've actually been enjoying this time with my wife and cats, getting some reading done, watching lots of movies, walking the neighborhood, and listening to music. And, of course, taking naps!

 

[Tecumseh]

Want to do a shout out to the monitors and creators of this website. A LOT of people are told you will make 100% recovery and from a very narrow point of view this is kinda of true. In all of medicine there is a HUGE lack of good long term studies. Having said all that (I am an MD) the FEW decent long term studies paint a very different picture, in one study looking at NASAH 5 years out 1/2 were either no longer employed or working in very reduced capacity.  Even people who make “100%” recovery if they had thorough pre and post testing I am pretty sure it would show deficits.

 

My personal theory is many of us have had damage to the reticular activating system or RAS an area where these bleeds occur and is poorly understood  and this explains some of the fatigue which dogs us. I find I can do things but “activating” getting going is so hard.

[Patc]

Exactly, Tecumseh....it’s the “activating” that I find the hardest!  I didn’t realize this was associated with my bleed.  I’m 4.5 yrs out, and mostly recovered.  Like some here, fatigue is always lurking around a corner waiting to pull me back. Luckily I’m not too bothered with headaches, but I get “fuzzy head”

 

What I noticed since my bleed is my lack of motivation.  I push through, but some days it’s so hard!  I wonder why there is such a lack of research in this area.  This community has been a life saver!

~Pat~

[Bri]

On 17/02/2021 at 18:44, Rory said:

Seems these things often occur during exercise--

Hi Rory,

It does seem to be a common denominator.  I was doing a few bicep curls when my SAH occurred. I suppose whatever weakness was there, just needs a reason to finally pop.

 

As you will know from your own research and from the posts on this, very useful forum, once you have had a bleed the risk of another is the same as anyone else in the population, i.e minuscule.

 

Hope you have got your confidence back, to get in with the things you enjoy.

 

I now exercise the same as I did before, well I am 2 years older, so the old bones need longer rest between runs.

"Funny heads" and bouts of tiredness are something I now accept as likely to be with me for ever. I also have accepted that multi tasking is to be avoided if possible. I can focus well on linear tasks but keeping a number of balls in the air at the same time is tiring and stressful.

 

Hope you have a speedy and full recovery.

Bri..

 

[Nikki]

Hi.  I am joining in super late but I always remember how helpful reading through responses was after I had my SAH about 10 years ago, while my 30's.

 

I'm also from the Bay Area and considered myself very healthy, and spent about a week in the Neurological ICU at Eden Hospital in Castro valley with amazing care!  I hope you are continuing to do well!

 

10 years in.....
I constantly have trouble remembering words....I struggle to find complex words and tend to use simpler words in my vocabulary to say things.  My work management loved that, BUT My husband and kids not so much.

 

I have trouble remembering things.   I have to spend A LOT more time to recall events than others around me.  It is a challenging because I'm 99% normal, so it seems to be more of a frustration to those closest to me.   For example, when my daughter asks for help with homework, it can take me hours to read and try to understand material I should already know.  I can do it, and I like doing it, but it is a lot more effort for me to re-learn material.

I have difficulty turning my head fast - I quickly get disoriented.  In real life, I'm extremely nervous backing up a car (because of the need to turn my head quickly in both directions) so I try my best to avoid that situation at all times.

 

Nikki