Bri Posted July 22, 2019 Share Posted July 22, 2019 Hello there, I am very pleased to have found this forum, specifically for those who suffered a non aneurysmal bleed. I am 58 years old and had my bleed back in May (24th). A total of 3 weeks in hospital, an Evd fitted for 8 days, with one episode of vasospasm on day 4 post bleed. CT, MRI and two angiograms couldn't find the cause of the SAH. Upon release, I was told that I should go home and, get back to doing what I did before. Since coming home, I have gained all the weight I lost in hospital and I am capable of doing most jobs around the house. Although I still suffer mild headaches after too much exertion or if I stand up quickly. What I want to do is start running again, I am missing the physical release and de stressing benefits of a decent jog. It is now two months since the bleed and would be interested to hear other people's opinion on when to get back doing exercise. Link to comment Share on other sites More sharing options...
ClareM Posted July 23, 2019 Share Posted July 23, 2019 Hi Bri welcome to BTG glad you have found us and are finding the site useful. I too too am a jogger, actually had my bleed whilst out running 4 years ago. Like you my bleed was non aneurysmal and I had an evd for 8 days - so a very similar experience. I was 55 at the time of my NASAH in Feb 2015. I started running again about the end of May 2015 by joining a C25k group building up slowly. This was after having an MRI and all clear to run from my neurovascular team. I gradually built up distance again taking it slowly as it was obviously a worry I would have another bleed - although the mri said I wouldn’t! I now run approx 5 miles, three times a week, with a group or friends. Have completed the Great South Run twice and intend to do it again this year. To me running is my saviour. It helps with stress which I suffer from at work and I feel I do it more for my mental than physical health. I can be brain dead after a working day but always feel much better after a run so I can understand how you miss it. Get the all clear from from your team, make sure you drink plenty whilst running and get back out there. Good luck, feel free to ask any more questions. Look forward to hearing how you get on! Clare xx Link to comment Share on other sites More sharing options...
Bri Posted July 23, 2019 Author Share Posted July 23, 2019 Hi Claire, Thanks for sharing your experience. I am having an Mri in September and seeing the neurologist a week later. I will try and take your advise and keep the trainers locked up until then. It is strange condition to deal with, having no outward signs of illness and being, almost back to my old self. I hope that the headaches, tired days and the associated disconnection between brain and mouth that seems to occur sometimes, will be gone soon but that might be wishful thinking. At least there are dozens of posts on this site from people like yourself, who are further down the road, to read and gain some understanding of this strange condition. Bri. Link to comment Share on other sites More sharing options...
ClareM Posted July 23, 2019 Share Posted July 23, 2019 Glad to hear you are making a good recovery. Take it slowly, the fatigue will be the thing to watch out for. It’s hard when you seem to be fine on the outside - on the inside your are still recovering so beware. Good luck with your appointment in September. Is there a nurse specialist at the unit you were treated who you ask about some gentle exercise before then? I can understand how frustrating it is not to be able to run! Clare xx Link to comment Share on other sites More sharing options...
Macca Posted July 23, 2019 Share Posted July 23, 2019 Hi Bri, I think the sensible answer is to:- a) get the approval and advice of your doctors, b) start with a walking/jogging machine so that at the first sign of trouble you can sit down and rest and nobody has to come and get you. They know where you are, and you don't have to worry about how to get home! c) make sure someone is with you. It's different for all of us - just take care and don't do too much too soon. Your body will let you know if you have and at first it may seem like two steps forward and one back. Remember that resting properly is as important as the exercise, particularly in the early phases. Any trouble, stop and go back to your medics. Good luck Macca Link to comment Share on other sites More sharing options...
Bri Posted July 23, 2019 Author Share Posted July 23, 2019 Hi Macca, Thanks for the input. No doubt you are right. I will stick to taking the dog out for his daily walk until I have had the scan, and seen the neurologist in September. My wife is on my case if she thinks I have over done things. Bri. Link to comment Share on other sites More sharing options...
Chris G Posted July 25, 2019 Share Posted July 25, 2019 I think you should ask your doctor and follow the advice. My NASAH happened while I was running. I was told to wait three months before I started back. But that was mainly because they wanted to do another scan at 3 months once the bleeding cleared to ensure there was no hidden cause they could not see. After that scan, I was cleared to run. Until then I walked (and occassionally jogged a little until my daughter yelled at me for it). I was back up to my old pace and distance within about 6 - 8 weeks. I now run almost everyday with no worries. Link to comment Share on other sites More sharing options...
Bri Posted July 25, 2019 Author Share Posted July 25, 2019 Thanks Chris. That's just what I wanted to hear. It's good that you have put it behind you and got back to where you were. I look forward to getting fit again. My bleed happened while doing some weight training. Perhaps one day I will be able to look at weights without a bit of fear that it could happen again. Regards Brian Link to comment Share on other sites More sharing options...
Chris G Posted July 26, 2019 Share Posted July 26, 2019 The anxiety should pass. You are stronger now than you were before with that flaw waiting to happen. Now it’s conquered and gone. I run by the spot where my bleed eventually put me on my knees and just smile and pass by. Don’t blame the activity. Best wishes. Link to comment Share on other sites More sharing options...
Crazy Posted July 29, 2019 Share Posted July 29, 2019 Hey Bri, Sounds very similar to what I experienced. I managed to add cerebral venous sinus thrombosis to the mix and was running (slowly) 4 weeks later. Certainly felt a bit funny on that first month back but 12 months later it all seems fine. Sounds like we have a similar wife! My neurosurgeon said running was a good thing to do as long as I didn’t push to hard early on. Now I’m back to marathons occasionally and a fair bit a week. Your body will tell you if you’re going to hard. Enjoy it when you get the first one done! Cheers, Dave Link to comment Share on other sites More sharing options...
Bri Posted July 29, 2019 Author Share Posted July 29, 2019 Thanks Dave, Very useful and practical input. I am feeling stronger as each week passes. I have started doing exercises that keep my core strength up and will go out walking at a fair lick, without pushing it. Aware that a headache is always waiting. We are away to Spain for two weeks camping in 12 days. It will be a challenge not to do my normal hill walking and evening run, before enjoying the local Rioja. It's great to hear how other people are dealing with their own recovery, and quite uplifting to know that there is every chance I will be back to my old self in a few months. Bri. Link to comment Share on other sites More sharing options...
Bri Posted September 11, 2019 Author Share Posted September 11, 2019 Just a quick update. I saw the neurologist yesterday at my (nearly 4 months) post bleed check up. She showed me the original mri scans of my brain against the ones taken last week. Apparently it was a large SAH that was typical of an Aneurysm rupture. But because they couldn't find the cause, after two angiogram, 2 CT and 2 mri scans, it is classed as a Non aneurysmal SAH. There appears to be a bit of staining on the front left side of my brain as a result of the bleed. My neurologist seemed very pleased with my overall recovery,. She told me that I can build up my exercise regime to my previous levels. I asked about the chance of a future rebleed. She said that only 15% of SAH patients are classed as Non aneurysmal and in the 16 years she had been a neurologist, she had only had one of these patients have a rebleed. Good enough for me! I intend to get back on my bike and hit the road ASAP, might even get back to the gym. Mild Headaches and periods of tiredness will no doubt be a new part of my immediate future, but I intend to live a long and full life, without dwelling on what has happened and whether it could happen again. Regards Brian. Link to comment Share on other sites More sharing options...
Super Mario Posted September 11, 2019 Share Posted September 11, 2019 36 minutes ago, Bri said: I intend to live a long and full life, without dwelling on what has happened and whether it could happen again. That is a very good positive attitude to have. There is no point in looking back so enjoy the future to the best of your ability. Link to comment Share on other sites More sharing options...
ClareM Posted September 12, 2019 Share Posted September 12, 2019 Go for it Bri and enjoy that feeling! 😀 clare xx Link to comment Share on other sites More sharing options...
Crazy Posted September 16, 2019 Share Posted September 16, 2019 Well done Bri, super attitude mate. The only way to be! Link to comment Share on other sites More sharing options...
Karen Posted September 19, 2019 Share Posted September 19, 2019 Posted on behalf of Chris G - Quote Get to work! Link to comment Share on other sites More sharing options...
Skippy Posted September 19, 2019 Share Posted September 19, 2019 Yeah Chris - agree - Get to work on it Bri - fantastic attitude to have - its how I got where I am now too - go for it!! Link to comment Share on other sites More sharing options...
Bri Posted February 7, 2020 Author Share Posted February 7, 2020 Hi, It's now almost nine months since my bleed. Physically I am just about back where I was before it happened. Running between 3 and 6 miles twice a week, even doing a bit if weight training again. Tiredness is no longer a daily issue and I am no longer suffering from the constant mild headache. Still get headaches if straining or bending down or even getting up quickly. I did wonder why the headaches and occasional light headednedd were present for so long. Until, that is, I got copies of the results from the various scans I have had. I got these from the DVLA when I had my license given back last month. Apparently I presented with a Grade V Wfns SAH. And had an Evd fitted due to hydrocephalus. The ensuing vasospasm on day 4 caused an acute infarct? In the left insula. At the final MRI in Sept, apparently most of the subarachnoid blood had not resolved and there was " marked cerebellar atrophy" And dilated ventricular system. Harrowing reading but it made me more aware of the damage suffered by the old brain. No wonder the recovery takes so long. I feel I am still here due to the medical intervention of Cardiff neurology department and am aware how lucky I am to only have relatively mild symptoms. We have all had similar trauma in our heads, and we are all survivers. It's good to read people's stories and it is great to be able to empathise with most of the posts on this site. Thanks for reading. Bri.. Link to comment Share on other sites More sharing options...
Crazy Posted May 2, 2020 Share Posted May 2, 2020 Good on ya Bri. Keep on keeping on mate. It’s all any of us can ever do Cheers, Dave Link to comment Share on other sites More sharing options...
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