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Sean. Hello guys!


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Hello there, I writing this from my hospital bed after being diagnosed with a sah two days ago.

This is my story, sorry for the length of post but I've never done this type of thing before.

 

I'm a 37 year old husband and dad to a six year old little girl and a three year old little boy. I enjoy the mountains and compete in fell races and ultramarathons. I run 35-50 miles each week and lift weights twice a week.

On Wednesday the 7th August I was working-out at the gym when, immediately after an intensive set of exercises, I experienced a sudden onset of a migraine.

 

I showered, I changed, I drove home, I was sick, and I put myself to bed. I visited my GP the following day and was prescribed with Ibuprofen and Paracetamol to counter an 'exercise induced headache' and 'trapped nerve'.

Thursday and Friday were pretty rough so I rested up well. Saturday was okay; feeling about 60% I took my kids to the park and had a rather pleasant pick-nick.

 

On Sunday I woke with a sharp pain in my head and the return of the headache, and I took myself to an emergency GP were I was advised to take Asprin.

On Monday I woke, the pain was worse and I took myself to A&E. After a lumber puncture and two CT andiograms I was diagnosed with a SAH.

 

I have no other, apparent, symptoms other than a headache which seems to be easing off now. I've seen a neurologist and have been told to rest up for at least 12 weeks, but I've also been told that I won't be seen as an out patient. I'll be discharged on Monday but feel pretty scared that that will be it; I don't know anything about this, haven't been given any literature, and don't know of any specialist provisions that may be available.

 

I appreciate that my symptoms appear to be minor in comparison to other but I'm scared all the same; that my condition may deteriorate, that it may happen again, that I may misinterpret the term 'rest up' and 'take it easy'.

Again, sorry for the long post!

Sean

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Sorry Sean for you having to go through this. You may ask WHY you do not see anyone for a follow up, ask all those questions scaring you NOW before you do not get a chance. Was there not known cause for the SAH? In that case there is a slim to never chance of it happening again but still ASK now before you leave. ALso ask who can you call with questions. Geez, It was 1 1/2 years before I even thought to ask where was this "rare site" of the SAH was.

 

I cannot stress enough to ask NOW. And tell them you are scared. Are you alone? DO you have family? I was able to text in hospital as well. :) But I just really thought I would have someone that specializes in the brain there for me to ask questions.

Good Luck on finding this site so soon!! Cannot stress once again to be firm that they give you information, let them know You do not not understand.

 

Keep in touch.

Maryb

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Hi,

Sounds like you had a non aneurysmal SAH? I had one too. Yes, be sure the drs clarify for you. It's a very scary time and please rest, rest, rest and do not pick up anything heavy for awhile because of head pressure and if you had an angiogram. I have an 8 yr old so it can be hard but owe it to your health and family.

I

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Hi, thanks for your advice; it really is appreciated.

 

Both my CT angiograms were clear in that neither showed any abnormality, the diagnosis is based on the sudden onset headache and the positive lumber puncture result. So I guess, if there had been an aneurism, this would have shown on at least one of the CT's.

 

I wondering now how long i need to take of work? It's a highly concentrative job rather than physical.

Again, thanks for any help.

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Each recovery is individual and you can put no time limit on it. The brain will take a long time to heal in most cases.

You may well find that your concentration levels are affected and that you will suffer from fatigue.

Do not be too eager to return to work and to go back gradually is the best option when the time comes. Others have returned to work too early only to find that they have to take more time off.

 

There is a Back to Work thread on here that I think you would find useful to read.

http://www.behindthegray.net/vbulletin/showthread.php?7165-Back-To-Work

Make sure that you keep well hydrated as that really does help with headaches.

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Hi Welcome to the Club, (although none of us here would elect to be members!)

 

The first thing which struck me about your posts is how quickly you are able to write online post SAH / NASAH - and write such lengthy posts too. I take that as a positive sign - although admittedly, I do not know how long it is taking you to write the posts and I do not know how fatigued you are afterwards. Despite that, I am impressed with how 'switched on' you seem post diagnosis. I am not a doctor, but I do take this as a positive sign.

 

Recovery is highly individual, as Penny said. To start off with, no SAH is the same. There are varying degrees to them and also where the SAH happens is relevant. We don't use some parts of our brains as much as others; whereas other parts of our brains control complicated functions. So where the SAH happens can determine outcome.

 

I am now going to offer you some feedback that I wish I had in the early days - but you are welcome to discount it. I hated being told what to do in the early stages of my recovery, but I did make mistakes. I notice that you are an ultarunner and a gym bunny. I was a marathon runner and trained in the gym too. I would train six times a week, sometimes before work and sometimes after. My fitness was part of my identity and training was the biggest element of my life.

 

When I came out of hospital, I continued with my sport philosophies - no pain, no gain. Feel the burn. Pain is weakness leaving the body etc etc!! Just bear in mind, (like I did not,) that FATIGUE and a healthy tiredness are completely different. You have to respect fatigue and work with it more, less is more; or rather REST is more. When you start running again, (although dare I say it, you will probably be JOGGING first - sorry to mention the J-Word!) your brain will be using lots of energy. This is not just about 'fuel in the tank' energy for running.

 

Instead, your brain will be using energy to process the activity of jogging, the sounds around you, the smells, visuals - absolutely everything. Use this knowledge to go easy on yourself, IF you find yourself fatiguing early. When I fatigued early, I would tell myself how useless I was, (not helpful!) I just wish I understood back then, just exactly what my brain was doing for me.

You will know that REST is an important element of recuperation within sport. You probably have rest days within your training schedules.

 

Your brain needs a rest for some while - it will tell you when it needs a rest and give you physical cues i.e. signs of tiredness. By helping it through this patch, you will allow it to heal as much as possible.

 

Good luck - you are doing fab already.

Lynne

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Hi Sean,

 

I'm new here too. I had my SAH on 22nd July with no cause found. I was at the gym with my young daughter when it happened. It's really confusing and frightening isn't it? You get given this terrifying diagnosis, admitted to hospital ( in my case neuro HDU then ward for 2 weeks)......but no information! I was repeatedly told I was lucky to survive, but not out of the woods yet, to take it easy etc etc, but no one could tell me what take it easy meant, how much better I would get, or even what I definitely shouldn't do - especially re exercise.

 

My first week home I was mainly using a wheelchair, needed help with stairs, showering etc. Last week I could walk short distances and manage the stairs on my own. Yesterday I managed to walk for about 30 minutes, but my legs go all 'thunderbirds' and refuse to move after that! It sounds weird, but it was windy and it took a lot of concentration to keep my balance whilst coping with an extra source of distraction! I'm trying to listen to the senior members on this site and sleep when I need to and not beat myself up too much but it's hard and there are things I just can't do yet.

 

I can really relate to the feeling scared thing, I'm 44 and have a lovely husband and 2 children - I'm not done with my life yet! It sounds like with SAH where there isn't an aneurysm it is rare for it to repeat...but I guess it is too early for either of us to believe that yet.

 

I really hope you get some information - one of the members on here suggested I spoke to the specialist neuro nurse and I have a follow up to ask her questions soon. Maybe there is someone like that where you are?

Hope you are soon feeling better and home with your family

 

best wishes,

julie

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Hi Sean and welcome to Behind the Gray.

 

I've been a regular member on here for a few years now and this is the first time I can recall a new member joining us and posting whilst still in hospital! That is quite impressive and like Lynne said, a good sign. Getting no information etc is an all too common theme amongst us sahers, which is why this site provides such an invaluable source of helpful advice and friendship. There is no better way than getting advice from personal experiences.

 

If you are not going to getting an outpatient appointment, it may be worth seeing if there is at least a phone number that the hospital can supply which you can use to speak to someone if you have any concerns when you are back home. The brain and spine foundation website provide a phone number which is a helpline run by neuro nurses or I believe you can email them with any questions too.

 

Take it easy, rest as much as possible and then hopefully you will be able to build up slowly to previous activities as and when you feel able to. The passage of time will be your best friend, anxieties, fears and many other post-sah symptoms improve over time. I certainly don't feel anywhere near as scared as I did in the beginning - and although I live daily knowing I have another aneurysm, life goes on, albeit it a little differently.

 

Wishing you all the best,

Sarah

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With my NASAH I was off 3 months to "heal" but I also had a vertebral artery dissection and if I recall right it takes 3 months for that to heal- as in sutures/ procedure not your brain to absorb the blood. Also it would be great if you can get records of where the bleed was, any damage from scans etc.

 

It helps to understand it all, for me I had some damage in lobes and it is nice to know that is why reading and writing is a struggle. Otherwise I would be depressed thinking I jsut dont get it- it helped me to know it was damaged in a strange way so I could "let it go" instead of beating myself up over it. I was phased back to work at 5-6 months.

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Hi Sean warm welcome to the site, glad you found us.

 

Not sure but your maybe the first one to join from your hospital bed! the fear your having about what if! is all quite natural, but since you are still in hospital ask the staff for any leaflets or info they can give you. But YES it is all to common not getting anything the internet is great though, when I had mine didn't have a computer, didn't know how to use a computer was completely out on my own.

 

Take things easy rest and listen to your body when it says slow down do.

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Hi

All these replies are really good and I'm really grateful for this incredibly helpful and supportive fora. Cognitive function is fine; I'm posting this from my phone which is a task in itself prior to any SAH. I actually feel okay, not particularly fatigued; I'm managing the headache, which I'd describe as mild, with Paractamol and I've taken a short walk to the hospital cafe with no adverse effect.

 

My scans show nothing; no 'blebs', anurisms or anything else that would suggest the area of the bleed. The diagnosis, I think, is based entirely on the trace in my CTF and the way the headache appeared. So I've got very little data to go off.

I actually feel a little fraudulent posting on here, but I feel so much better from the responses.

 

You've all given me some food for thought and given me some questions that I need to chase up.

Lin-Lin, your post was especially helpful given my background. Did you consult with a specialist before exercise (I'm in Cardiff)?

Thanks again, I'm humbled by your consideration.

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Hi again,

 

Ah, you're a Taff too! Croeso!

I was at the Heath, where I suspect you are staying too.

My Consultant was Mr. Nannapaneni - lovely man.

 

Yes, I did get medical clearance before I started exercising. I think it is always wise to do that after ill health; and since all our circumstances are different, we cannot assume that just because someone else did something, that it is healthy for ourselves.

It is highly likely that you will be given the go-ahead to resume exercise however, as has been the case for many of us here.

I'm just mindful of your psychology more than anything!

 

From my background, I feel that I know what kind of attitude you possess. You will be used to long runs and continuing running while experiencing discomfort. When I used to run marathons, I would always tell myself in the last few miles how the mind wants to give up before the body and use this to push me through the effort.

 

Unfortunately, I possessed the same attitude post SAH and sadly ignored my body's signs that it was struggling. In retrospect, I delayed my recovery because I was pushing myself too hard. My immune system was very fragile and I developed many colds - which my body had to fight hard to overcome.

 

It is understandable however that you will want to exercise and the correct form of exercise is beneficial. My body responded better to gentler walks, yoga and pilates. (I suffered badly with fatigue however and still do; you may not have to adapt your training as much as me.)

 

I am sure that you will figure out a good approach. (Just beware of that 'Runner's Mentality' which from personal experience, can be a little bonkers!!)

Lynne

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