New member. SAH Jan 2013. What to expect?

[hendo24]

Hello,

Well...Im a new member to this site and a 42yo male. Its only been 1 month since my SAH and I'm still trying to get an understanding of what happened and what to expect. In January, I was working out in my home gym and suddenly, without trauma....massive headache, vomiting, etc. 3-4 hours later, I'm in the emergency room and the doctor is telling my wife that I have a brain hemorrhage and to get our children and parents and loved ones there immediately. Good news is, scans and angiography are good and apparently its Nonaneurysmal Paramesencephalic. I have been trying to research quite a bit and from what I understand the longterm prognosis can be very good. Honestly, I am so grateful to just be alive....but also, I am pretty frustrated and worried about what I will be able to do.... and if & when. Still have constant headaches and just feeling a bit 'swirly' all the time. Also constant ringing in my right ear and lost some hearing in the high frequency range. Im starting to feel better until I get up and cover any distance, and then the 'swirling' comes back and I feel like Im 100yrs old! I don't want to let this beat me and I tend to want to push, but I've quickly learned that doesn't seem to be a good strategy. I have really never been sick a day in my life, and I'm a big health and fitness geek. I have been an endurance athlete all of my life and routinely do cross-country triathlon-style extreme adventure races, most lasting 12 hours up to 48 hours, and also have always trained rigorously running or biking 60-100miles a week....its my therapy! I have been trying to do very limited stretching and isometric stuff while wearing a heart monitor to make sure it doesn't elevate...but maybe its too soon? not sure...

Anyway, would love to hear from others about what to expect. And particularly, those that have a pretty active lifestyle....how are you doing now? how long did it take? are there things that you just won't ever be able to do again? any advice on training (or not)?

Thanks for letting me share. My sincerest prayers and respect for all of you that have suffered this and worse. I appreciate your advice!

Wade

[Sandi K]

Welcome to BTG! It's early days yet so give it some time and you will notice things feeling better. Drink lots of water and above all you need rest now as your brain repairs itself.

Sandi K.

[paul99]

hi wade

pleased you have found us be careful how much you research on the web, it can be overpowering and at times misleading and giving you false hope.

the main thing now being only a month since your bleed is to listen to your body and take heed. there are a couple of people on here like yourself who have been very active to say the least and have struggled to come to terms with the restriction on what they did before and what they are capable to do so early after a bleed , who will come on later and let you know how they coped.

im so pleased to hear that you have survived and are now on the road to recovery take things slowly listen to your body it can take a very long time to fully recover if thats the right word to use or is it to modify your life style to cope with the changes it does get better in time i think the adage is slowly slowly catchee the monkey i wish you well and hope things improve as many on here suffer the same complaint of the muzzyness and hearing problems keep up the fliuds and take one day at a time best wishes

[Louise]

Hi Wade

Warm welcome to the site, so pleased you found us....

Yes take things very slowley and do listen when your body says stop... rest up.

Every one of us seem to be different I dont think there is a (looking for the right word:roll:) set time frame.....but its only a month....

[Guest]

You should contact our member "Teechur". She's very active and has a fitness training business. You can compare notes. Hope you're on your way to feeling better soon.

Sue

[Daffodil]

Wade. Welcome.

Swirly, that's a very good description of post SAH feelings!

I was pretty active prior to mine last year but I have found its taking time to rebuild stamina levels. I didn't train at anywhere near the level you did though, swimming and cycling were my thing but just regular fitness levels and I'm only just getting back to managing swimming regularly to be honest. some weeks I dot have the energy to do that though.

I think for me I lost so much body condition with all my procedures ( i spent about 12 weeks overall in hospital last year) . This year is all about regaining strength and fitness but slowly does it. If I try and do too much too fast I pay for it. So that's my advice, really slow build up and if you feel rough take it back a notch and then build up again.

Best wishes

[Winb143]

Hi Wade,

You will have good and bad days, but as you go along you will get better and better so keep your chin up.

I had anni SAH, was told I would not walk again, okay I can now walk 100 yards but onwards and upwards.

We are here to tell our story so be brave and when down sing a happy song lol well it works for me

Best Wishes

WinB143 x

Edited February 20, 2013 by Winb143

[DawnS]

Hi Wade,

welcome to BTG!

I used to enjoy regular long walks before sah so when I got home from hospital, I was shocked to find that the end of the street seemed to be miles away. I honestly thought this was a product of the sah and it wasn't until the occupational health doctor mentioned to me that it was due to me lying in a hospital bed for three weeks that I understood that it was really muscle wastage. It might sound obvious, and beforehand it would have been, but I lost most of my logic abilities in the bleed. Once the penny dropped, I was able to approach exercise very differently, I understood that I would need to build up gradually and not push too fast too quickly.

The same applies for your brain. Don't expect too much too soon. You have experienced a huge trauma and your brain needs time to recover. In the same way that you wouldn't go out running within weeks of breaking your ankle, don't try to make your brain sprint before it is ready. Your brain will make it clear to you when you are pushing too hard. Headaches, dizzyness, sensitivity to light and noise - all these things are signs that you are doing too much (or at least they are for me).

To begin with, this can all feel very frustrating but those feelings lessen with time. Instead of being irritated that I can't get past 22:00 even at the weekend, I now relish having time in the dark in the silence (earplugs are my friends!) with the understanding that I am resting my brain and giving myself more chance of having a nice day tomorrow. Try to view your week as one single time unit. Try not to arrange things on too many consecutive days, space your plans out some. You will soon find a level of activity that is good for you.

Dawn x

[MaryB]

Hi Wade,

I am a year and 1/2 out now. I am still surprised that I suddenly can "get something" that I was sure was lost forever.

It is still VERY early on. Goodness I was still holding my head still with my hands and looking for socks for a half an hour at that point. Boy, lessons learned? You cannot rush your head as it if it is a muscle injury. It will not work that way, it has to heal on it's on and sometimes it is one step forward and 2 back. But it gets better.

Those of us that are A personalities pretty much think we can WILL OURSELVES better by doing more. That's a mistake, it will take as long as it does. Rest heals and water hydrates. Over doing will set you back a few days. Which we all seem to deal with.

Although I am sure some people or many folks return back to normal right away or soon. Good question we should ask our doctors. They just do not seem to have enough information on SAH or NASAH. I had an NASAH along with a stroke & I am not worried that it will happen it again as the chances is next to nil.

By the end of the day I am not thinking as clear and start making mistakes so I need to recognized that and be more careful. Light, noise and movement ( leaves blowing etc) is a big deal for me, headaches lasted only 6 months and came back at 9 months but I was back to 34 hours a week at work. I need quite alone time in the dark by the end of my work day. But on the bright side last week I could tell how fast a car was coming before I pulled out!! I use to just wait for everyone to go by. Small town, USA.

So just try not rush yourself to much, do not get discourage it will come.

Good Luck and Welcome! Maryb

[JellyB]

Hi. Its been a while since I last visited BTG and I just saw your post. I'm sports active and had a NASAH June 2011 so I'm a way down the road now. I've done alot of endurance sport over the years - six times Ironman Tri finisher.

The docs told me the NASAH had nothing to do with sports activity. It was just a random event and who knows why it happened. Since then I've quized them a few times but the answer is always the same. They say I can go back to doing what I did before and the chances of recurrence are really really low, low enough not to worry about it. So I'm taking their word for it and am now back training It took a while and headaches troubled me for a long time - especially if I was tired or slept badly. I still do have a bit of trouble with noise but its improved. I find I cant cope with background noise. In busy environments I can sometimes reach a threshold and i just have to get out and away.

I am planning on doing another ironman by the way so I hope this might provide you some encouragement. I'm pretty much able to do what I've done before. I swim regularly and did a 100 mile bike last Oct.

Take care because NASAH isn't a simple sports injury. Take some time out and let your body fix itself. Theres no rush. Enjoy the simple things in life for a while.

You might find family and friends are worrying about you more than you think. Thats what I found when I didn't even realise it and it took me by surprise. They were worrying more than I was. So think of them.

Based on my experience (we are all different) it's too soon for training by quite a few months. I got some sports yoga dvds and did that for a while at home. Flexibility was something i could work on.

Best of luck

[Winb143]

Hi JellyB

Good to hear from you again, I think it was you who used to post when I just came on here in 2011 ?

Glad to hear you are doing well, keep it up as you give us all hope.

Best Wishes

WinB143

[JellyB]

Thanks for the good wishes. Hope you are doing well.

Bye

Jellyb

[hendo24]

Thank you all so much for responding. I, like many that I have read about here, have really had to research my problem, as my primary care physician and even general neurologist were relatively unfamiliar with PNSAH. I have read virtually every article and book that I could get my hands on. I only learned of one individual that apparently suffered this a second time. Ironically and unfortunately, he too, was a triathlete so...??? It makes you wander, is there no to little recurrance because people change or limit their lifestyles? Or does the venous system truly scar and repair itself better than the original defect so that there is virtually no chance to happen again??? Would be nice to know how much we can resume our previous lifestyles physically? I love it but not enough to die a young man for it I did get to review the CT, CTA, and cerebral 3D angiogram and all were definatively free of aneurysm or other defect except perimesencephalic blood in the SA.

Anyway, for now I am still not even 2 months out so I can't really even try to force anything or I get an immediate dizzying headache. I have tried a very controlled form of Yoga, stretching, and isometrics while wearing a heartrate monitor and keeping my pulse below 100. Its not much but sitting without exercise really doesn't agree with me, it torques my back and my body just doesn't like it! Unfortunately, I can't really go for walks either....I'm fine at work moving from chair to chair but if I really try to get into a long stride: ....headache! But getting slowly better I think.

It really helps to hear about other's experiences that have been through this. I am grateful for your responses. Best wishes to all of you and my prayers for you!!!!

Wade