Looks like I dodged a bullet - Tony H

[Tony H]

Hi everyone, my name is Tony, I am a 52 yo father of 4 with a previously busy working life mixed with lots of fitness training and a history of not having any medical problems for my adult life.

On 16 May 2012, I was doing a pretty usual training session in my shed, skipping at the time, when I felt a sudden whack as if someone hit me over the head with a cricket bat. This was quickly followed by a global headache like nothing I had ever experienced before. Initially I thought it would all go away but soon realised it was time to go back to the house. At this stage I was stunned more than anything but soon after I became very sensitive to light and particularly sound.

Fortunately my dear wife recognised that this was something potentially pretty serious so we called an emergency number and I was advised to go straight to hospital – which we did.

The emergency doctor at our local country hospital was quick to put SAH on the list of possibilities, did a CT scan (which was negative) took lumbar CSF (which had blood in it) and then put me on the Royal Flying Doctor Service (RFDS) plane to Perth which is about 400km away.

Whilst in the Perth hospital I had more CT scans, an MRI scan and a cerebral angiogram. These tests ruled out brain tumour, aneurysm and structural abnormalities of the cerebral vessels but no bleed site was identified.

After 5 days in hospital, the medical staff considered the emergency period was over, that they had pretty much ruled out the nasties and I was allowed to go home (although I wasn’t allowed to drive for a few days). I was advised that I could go back to work but I would have headaches for a little while.

So off I went to work a few days later thinking that was an interesting and totally unexpected experience and all would be well. Not so. The headache that started on 16 May 2012 persisted – it is there all the time in varying intensity.

I wasn’t sleeping properly at night, I was falling asleep during the day and I was getting fatigued very quickly. Analgesics had only limited effect. After continuing at work for a couple of weeks I reached a point of desperation and went to a local general practitioner for advice. The GP was quick to ask why I was at work at all and put me on various drugs to help me sleep and control the pain.

In August the neurosurgeon advised that he considered that I had had a small SAH and that I should be 100% recovered in 6 to 12 months. Good news I thought, and perhaps he will prove to be right but it is now 8 and a half months and my headache is still there all the time, I still get fatigued really easily, I have a constant ringing in my left ear, my balance has been compromised and my memory is not what it used to be.

My wife and I estimate that I am working at about 25% capacity at the moment and even at that level I need to rest every day. So off I went to the internet to see if I could find out what is going on with my head – and I found BTG. I would be grateful to hear from anyone with a similar experience who may be able to give me some advice on what I should do or what I should expect for the future. Many thanks.

Edited January 30, 2013 by Karen
paragraphs inserted

[paul99]

hi tony

glad you found us many on here will come on and compare their symptoms which sound so common in almost everyone im pleased you made it out the other side and bearing in mind how far you were from help makes even better well done to the dr

i can only wish you well in your recovery so far but be warned it could take quite some time before you meet your previose level of fitness but listen to your body and keep the fluids up take care and best wishes

[Sandi K]

Hi Tony! Welcome to BTG.

It could be me writing your post except I was in a meeting at work when the smack on the back of the neck occurred.

We all recover at different rates. However, many of us are told that we can get back to work and resume normal activity levels in 3 - 6 months. Because we are all told the same thing (or pretty close to the same thing) I thought there was something really wrong when I still wasn't all better at 3 months, then 6 months, then 8 months, and so on.

None of us can tell you when the headache will stop and your fatigue will go away. We are all different. There are commonalities in the symptoms we experience though. Most common seems to be the fatigue, and it seems to hang around the longest. We all get head sensations, some are headaches of varying severity, some are feelings of a tight elastic band around our heads, or some get a tender to the touch head, and some have sore sinuses. Some of us get all of the above!

The doctors seem unable to explain it. My GP says there just isn't enough research. The neurologists and neurosurgeons have done what they can with us so they discharge us and we are left to figure out what's happening.

I've found great support here at BTG, there is a lot of information here and people who can answer some of your questions or support you through the experience. Is there a local brain injury support group near you? Many have found that to be educational and helpful.

Sandi K.

[MaryB]

Welcome Tony!

Yes, it seems there is a shortage of medical information for us but this place is a gold mine. I was not diagnoised after spending a few days in hospital and returning home to find I was not really much better once they took my heavy duty pain meds away.

I had a NASAH - unknown reason and when I went back to hospital I was lucky that it was the 3rd time that that same emeregency room Doctor saw me. I was transferred to a bigger better hospital and my bleed was in a rare deep spot and not found until my surgeon studied my scans.

I hope you start to improve soon and you find much helpful information on this site. This has been the one constant thing in my recovery that has held me together knowing that this is all normal. Neurologsit and Neurosurgeon do not say much at all. Thank GOD I love my GP and he gets it and understands me.

Drinking a lot of water helps much to keep your brain hydrated along with sleep. I would say a healthy bout of fresh air helps as well. Maryb

[Tony H]

Thank you Paul, Sandi and Mary for taking the time to read my tome and for replying so quickly. It is really helpful to read your responses which are unlike anything that i have been able to get from our medical profession. In saying this i don't mean to be critical of our medical people, i have nothing but praise for them, but they don't understand like people who have been there. Thanks again and thank you to those who make BTG happen.

[MaryB]

http://www.gloshospitals.org.uk/SharePoint5/Patient%20Information%20Leaflets/GHPI1016.pdf

Brain injury pamplet we should all get when we leave the hospital.

[kempse]

Hi Tony and a warm welcome to BTG. You've definitely stumbled across a good site for information, help and support following a sah.

It was 4 years last November since I had mine - I'm 51 and a mother of 3 - so recovery in that first year was pretty hard going. I returned to work 5 months after the bleed, which wasn't too bad as I was only part-time anyway. I'm not sure I would have coped so well if I'd suffered from constant headaches though - sorry not to be able to give you any advice on that. I did however suffer from extreme tiredness and that, for me, continued for 3.5 years. I work more hours now - in fact I have 4 different jobs now with a 5th one every so often. I think I only got to this point by being lucky enough to be able to stop and sleep almost whenever I needed to which I believe helped my brain heal.

Unfortunately there is no standard pattern or time limits to recovery as we are all different, although it appears that improvements can and do happen months, even years later. I think when we are given a time frame by the medical profession, we then perhaps assume we should be 100% when the deadline arrives - I don't think it works quite like that, so don't be disheartened if you get to the 12 month mark and things are not quite how you expected.

Wishing you all the best,

Sarah

[Daffodil]

Hi tony

Fantastic that you got such prompt attention as flying to hospitals is pretty dramatic I imagine. I hope your family is doing ok after the shock waves that seeing a family member unwell generates.

I had my SAH at the age of 39, I have two young children. Previously fit and well prior, just going about my normal business as we all were. 11mths on and I'm just planning my gradual return to work. My headaches subsided around the 9 month mark and now come back when I'm tired, over stimulated or any emotional situation but I also have a shunt managing CSF pressure so the docs aren't sure which causes what.

As Mary said the docs are amazing at treating the outcomes but not great at understanding our ongoing challenges. I saw my team this week for some checks and once again they expressed how little they know about the effect of blood leaks in the brain. I suppose from a learning point of view they can only work on donated brains which gives them the physiology of the damage but they can't ask how it feels in practice and us survivors are a rare bunch. So it's a learning curve.

So I will add the same advice, rest when you can, don't be tempted to go full throttle for a while yet and be kind to yourself. Take things more gently and ask your family to help you do that. One last thing, it's VERY ok to let the emotion out, bottling things up is one guaranteed headache for me! (im sure that you don't conform to an Aussie bloke stereotype though !lol)

So pleased you're with us

Daff

[Louise]

Hi Tony

Warm welcome to the site glad you found us. - my cousins live in WA Bumbury & Perth as well as other parts....

Yep no standard pattern for recovery just rest when tired, & keep the liquid intake up (no didnt mean a stubbie)

take care

[KelBel]

Hi Tony

Welcome to the site!

It certainly sounds like you have had all the classic symptoms relating to a SAH!?

I wonder if, like Mary, your bleed happened in an unusual location. It may be worth asking if someone can give a second opinion? I am not sure how you can go about that, but I know I would want to confirm that it was not a SAH..

I cannot recall when my headaches subsided a little... probably at about 9 months. I think I am so used to having headaches, having suffered daily headaches from about the age of 11 and then migraines for 8 years prior to my SAH.

I went back to work 11 weeks post-op (which was way too soon really) and I was back to full-time hours within a few weeks. I was getting home after work and sleeping about 2 hours before I could even think about getting anything to eat before going back to bed. It was just so tiring and my work weren't really that helpful either. In fact, most people just expected that I would be 'back to normal' as I had been 'fixed' in hospital (I had an aneurysm that was coiled).

I have been incredibly lucky that I have recovered so well. I am now 3 years post SAH; I work full-time, go to the gym 3 times a week when I can (although not able to at the moment due to unexplained arm pain) and also visit friends and family, go to cinema, out for meals and occassionally go to an art class at the weekend. I live alone so have all the cooking, cleaning etc to do myself and I kind-of keep on top of it.

I do hope your headaches start to ease soon. The recovery in the first year was my hardest. It just seemed to take so long and I often felt as though I was swimming through treacle! Everything made me tired.

I still get tired now, although I do cram a lot in to my waking moments!! I do find that busy places, plus lots of different noise (everyone talking at once, different conversations going on) and bright lights still tire me out massively. In fact one of the worst places I can be is a busy superstore, particularly Asda as they also have a radio station on too.

Take care

Kel x

[MaryB]

My daily headaches stopped at around 6 months I believe but overwhelming fatique was still there. I had a return of headaches almost daily from over doing but they are like a 4. My neurologist started me on ritalin at 13 months to see if I could stay awake in the afternoon. It was incredible at first and literally switched on the part of my brain that made it possible for me to make a meal again. It was amzing when that happened as the whole kitchen thing was so confusing and overwhelming I could not jsut go in there and make a pot of soup and wrap my head around the any of that.

I also was suffering that awful fatigue for 6-9 months prior to SAH and I never had that BAM head exploded moment but more like did not feel right, went home ealry from work, went bcak to dentist to see if it was the tooth I just had worked on, to emergency room for medication for nasusa, home to bed, up with vomiting and awful lightening headache. I suffered a stroke as well and that is what they found first. I guess I do not recall how and when I got to the bathroom floor though so maybe I did have a BAM moment but do not know about it.

I however have had occular issues with migraine auras getting worse for a year, I had only one true migraine in my life 20 years ago but suffered from occular auras since. I still have those often. Almost contast floater in my right eye when tired or try to use the microscope at work. My neurosurgon thinks I possibly have/ had come down with Chronic fatigue Symdome b4 SAH and that is what caused my extreme fatique. That is possible as it goes along with the fibro and makes sense but ???

[Tony H]

Hi everyone

I must say that I felt a great sense of relief when I got feedback from people on this site that clarified the range of recovery paths that can happen. And the more I read on this site the better I understand - so thank you again for your contributions. There is a down side though because I have been hanging on the 6 to 12 month recovery period as the duration of my sentence. I now realise that my recovery is not that unusual and it could go on for quite some time. That realisation has prompted some further effort on better looking after myself (and my brain). I guess that can't be all that bad but it probably means that I will have to reset my expectations. Some months ago I had thought that I would be able to get back into swimming training again for another big ocean swim (20km) but I am finding that a couple of kms a few times a week is my limit for now. I should be grateful though as I still feel confident that I will get there - just some more patience is needed. As for having a stubby Louise - alcohol has been off the agenda since May, firstly because I just did not feel like any, but when I had one nip of whisky to celebrate our 26th wedding anniversary I had an escalated headache for 2 days. So not keen to go there again for a while.

Bye for now.

Tony

[MaryB]

Tony - Check out the thead about holiday drinks.........I can handle 5 guiness or corona's but hard stuff scares me. I knwo that is my limit but I do not even feel they affect of drinking. And it is on rare occasions I do.

Also I was a bit depressed at the 1 year mark as I read and thought that is as good as I will become but that is not true. I told my dr the other day it is fascianating with the brain when the connections light up. I am repeating myself as I said this to Fern last night. But things like I can tell how fast a car is coming now- sounds scary I did not know that b4 I had sense but always waited but it is working again.

Still when fatiqued I am done for the day. Work is like 1000 x's the stress and noise I can handle but you know what I am not alone with that others are not working so hot under those conditions either. I am not the ONLY person going home at the end of the day unable to even talk to their spouse.

Check out the green room! How was fishing?

maryb

[Tony H]

Hi Mary

The holiday drinks thread is very interesting. I probably need to go with what I feel - which at the moment is to continue to avoid the drinks for a while longer.

The fishing was more of a 4WD expedition but was good fun. It was nice to be in the passenger seat for a change.

Regards

Tony