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Susan

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  1. Hi Andrea I know it can be a bit disconcerting when you are expecting a certain level of monitoring and then that changes. My hospital neurosurgeon suggested we scan my very small unruptured aneurysm at 6 months and then at increasing intervals of 1 year, 2 years and 3 years. He said if it had not changed in all that time (6 and a half years) we could safely forget about it. I was happy with that plan - I think mine is quite low risk because I've never had an aneurysm rupture (my bleed was non-aneurysmal). After the second scan though, I saw a different neurosurgeon who did not want to scan me again at all. I was a bit shocked to be potentially cut adrift after just 18 months and I insisted on another scan in 2 years time as I'd been expecting. It was a very uncomfortable consultation - he was quite dismissive and insensitive towards me, but he did eventually, rather begrudgingly, sign the paperwork for me to get my next scan. I hope you manage to get a scan for this year too if that will make you feel more secure. X
  2. Susan

    3 years and counting....

    Hi weedrea Congrats on your 3 year anniversary. I was, and still am, a night-owl and my event also happened at 1 in the morning. Best wishes. Keep on keeping on. Xx
  3. Hi Clare Welcome to BTG. I'm 2 and a half years post non-aneurysmal SAH and I still have to lie down straight after work. I have had periods where I might just rest rather than snooze but just lately I've been feeling more tired and headachy than usual and have been having a full on 2 hour snooze after work. You said that you had not had an issue with headaches until a couple of months ago so I wonder if something in life has changed for you lately? I put my changes partly down to a change in my work environment. A couple of months ago my company moved premises to a big bright brand new shiny building. Whilst this was delightful for everyone else I've found it a bit overwhelming - I honestly felt quite tearful the first morning I sat at my new desk. I'm now smack bang in the middle of a big open plan office whereas I used to work in a little cubbyhole off the main office. There is just way too much noise and light distraction - I wear ear plugs/ear defenders most of the time now whereas I had been using them less and less, and I've also taken to occasionally wearing my sunglasses indoors too. I agree with weedrea and Daff about the value of lots of small breaks. In my old building there was a wonderfully dark quiet windowless room that I used to escape to for regular 5 minute brain rests. I've done a recce of the new building but there seems to be nowhere similar to escape to - most of the rooms have automatic lighting that switches on when you enter with no switch to override it. I miss my dark quiet room! Replying to your post has made me realise I must speak to someone at work next week to try to sort somewhere out for taking breaks. I know what you mean about the effects of stress - I very quickly start to feel disorientated, fuzzy and heavy headed when I am confronted with a stressful situation. I follow Win's advice and try to avoid stress at all costs, but as Daff says, with major unavoidable stress, I acknowledge that it will have an impact and allow myself extra time and space to get over it. Another trigger for me for fatigue, headaches and fuzziness is overexertion in exercise. I'm only a very moderate exerciser since my bleed - mainly walking and a bit of swimming and pilates - but if I accidentally overexert even a little (it's very difficult to gauge at the time until it is too late) then it can take a couple of days for my head to recover. You've done well to be working full time for 8 months - I still only work part time. Take it easy and look after yourself. Best wishes xx.
  4. Susan

    Kay - new member

    Hi Kay I've never replied to one of your posts yet, but I have been reading them all with interest - you have gone through such an extraordinary amount of uncertainty over this past year, and coped with it all so bravely. I just wanted to say I hope you get all good news on March 19th and can finally start looking forward. Xxx
  5. Hi Ian Not sure what to say on the headaches (other than the usual advice to stay hydrated and not overdo things) as I was lucky enough to be able to manage mine with just the occasional paracetamol. You are only 2 months out from your NASAH - I am sure there are other members on this site who were still having to take regular pain relief for headaches at that stage - hopefully they will chip in with their own experience of using pain relief. I think pain relief is something you should be talking over with your GP, and as Daff said maybe getting a referral to a pain clinic if needed if pain persists longer term. Try not to be too concerned over your GP's comments over the fit note (though maybe think about trying out a new GP!) We all recover at different rates and many GPs will have no idea how long recovery can take. Although she never said it I got the feeling my GP had no knowledge whatsoever regarding SAH - she listened when I talked about my symptoms but made no real comment. She was happy enough to sign my fit notes though. I saw my neurosurgeon at 2 months and remember telling him I felt like I was permanently a bit drunk or hungover - and I remember him being surprised that I wasn't feeling better than I was - I guess because I seemed to be doing very well whilst in hospital. He was at least sympathetic and said he would recommend to my GP that I take at least another 6 weeks off work (I think by the time she received his letter she'd already signed me off anyway!) In the end I took 5 and a half months off before returning to work (and then I only lasted 3 weeks before needing another 6 weeks off!) To be honest YOU are the only person who can judge when a return to work is possible. I also tasted blood in my mouth sometimes but I do occasionally get bleeding gums so I did not worry too much about it. I think in the early months we all become over-aware of every sensation from the neck up. I do hope you start to feel better soon. X
  6. I've never properly looked into mindfulness but I think I've probably been practising it naturally since I had my haemorrhage. For me there was something about the shock of the event and the way it forced me to slow down that made me naturally open to experiencing the world around me in the moment. I absolutely love to walk now - I can spend hours tramping around on my own in some beautiful parkland near where I live. It has become a necessary part of my recovery - I really miss it if I go too many days without a good walk somewhere tranquil. I can also spend inordinate amounts of time lying on the settee just watching the view from my window - the wind blowing the huge leylanda bushes opposite and the sky slowing changing from day to night. I've definitely learnt how to chill more since my event.
  7. There are lots of theories but the exact source of a non-aneurysmal PMSAH is still not known for certain. When I asked my neurosurgeon in hospital why it happened he shrugged and said ' we don't know' - because he told me it was very unlikely to happen again I accepted this. But I do like to know the why and what about everything so did a bit of research when I left hospital - I soon realized I was never going to find a definitive answer on this one and so let it go - did not even bother re-asking the question at my follow up. From what I've read I'm happiest believing my PMSAH most likely had a venous or capillary source, and I don't worry about it happening again.
  8. Hi dbc Non-aneurysmal perimesencephalic haemorrhages (PMSAH) are generally regarded as having a benign clinical course - it is very rare that there will be any complications leading to death or severe disability for this type of haemorrhage. Rebleeds are also extremely rare - we have a member Jimble on this site who has had 2 perimesencephalic bleeds, but apart from him I have only read about one other case of a perimesencephalic rebleed and that was cited in the medical journal as a unique case. I am not sure what your neurosurgeon said is strictly true ( I think some doctors sometimes try to simplify information in order not to complicate understanding) - a very small percentage of haemorrhages with a perimesencephalic pattern will be caused by an aneurysm in the posterior circulation. The perimesencephalic pattern gives doctors a good indication that the bleed is most likely to be non-aneurysmal, but they do have to do further investigations to confirm this. Your angiogram would have confirmed this. I am guessing that the neurosurgeon was pretty happy with the outcome of your first angiogram to feel that another was not warranted. You have to remember that an angiogram is an invasive procedure carrying a risk (albeit very small) of stroke - a neurosurgeon would not want to carry out another unless absolutely necessary and might consider follow up with an MRA sufficient. I have even read of cases of PMSAH not getting even one angiogram, just a CTA. I had a PMSAH and had 2 angiograms - this was only because of a vasospasm of my basilar trunk artery on the first one - they needed to do another 3 weeks later when the vasospasm had resolved to ensure no aneurysms were hidden by the spasm. I would have been completely discharged after that with no follow up had it not been for a small unruptured aneurysm I have monitored. If you are still worried I would get back in touch with your treating hospital to talk through any concerns. Unfortunately because of its benign clinical course, and the fact that PMSAHers are often not followed up, I think that this has led to some medics underestimating the possible long term impact of a PMSAH. Whilst it is true that some do make a remarkable recovery there are plenty of posts on BTG to show that this is often not the case. I had a PMSAH just over 2 years ago and my most frequent and enduring symptom is the fuzzy head. I also sometimes still suffer fatigue, headaches, insomnia, mild tinnitus and am also quite sensitive to light and noise. For me, working only 18 hours a week (I'm a data analyst) makes life just manageable. It is hard - I know if I did not work I would feel much better physically. If I was younger I think I would have had to quit my job and try to find something easier on the brain - as I am only a few years from early retirement I decided to stick with it but every now and again I question that. Roll on retirement! Take care everyone. X
  9. Hi Mark It's good you've talked to your boss and alleviated some of your worries about work. Best just to have an open mind on recovery and take things as they come - to be aware that though symptoms can linger for some, a full recovery is also possible for some. Best wishes on your recovery. x
  10. Maintaining a good sleep routine has been a bit of a struggle for me post-haemorrhage. I get by but can't help feeling life could be better if only I could sleep better. I do sleep ok once I fall asleep (I do wake but generally go straight back to sleep), but my problem is the getting off to sleep in the first place - and the getting up in the morning having not had enough sleep. To snooze or not to snooze - that is the question. I think in the early months it is definitely best to listen to your body and rest whenever it tells you. If sleep problems persist then it can get tricky. I go through alternating periods of being very disciplined trying to have a routine, and periods of relaxing and not worrying about it (with the very occasional zopiclone thrown in). I think having a routine definitely improves my sleep, but I'm just not very good at sticking to routines! I could not get off to sleep last night and this morning (non-workday) it was much too tempting to switch off my alarm and roll back to sleep (for another 3 hours!). I'm feeling great now and looking forward to a nice afternoon walk in the sun but I know tomorrow morning (workday) it may be a different story.
  11. Hi Mark Welcome to BTG. If you were feeling pretty good before going back to work then it sounds like maybe you are just trying to do a bit too much a bit too soon. If possible take as much time off as you can to recover and then try building up the work hours a bit more slowly. My NASAH was 2 years ago and I still only work 18 to 20 hours a week. I don't get too many bad headaches now as I generally just work what is manageable for me. Sometimes though - like the past few weeks - I do get stressed with work - trying to get too much done in too little time. When I try to work faster with not enough breaks I just find everything starts to go downhill, and the headaches, fatigue, poor sleep all get worse. So I have to take stock, give myself a good talking to, talk to my boss and just calm it down for a while - otherwise I'll just end up on the sick. So take care of yourself and try not to push too hard. x
  12. Susan

    Cinema visit

    Hi I was very sensitive to noise and light in the early months and remember finding my first trip to the cinema a bit of an assault on the senses. I'm 2 years post NASAH and things have improved, though I would still never dream of going to a large multiplex cinema without foam ear plugs. Most of the time I go to a small local independent cinema - the noise levels are definitely lower there and I can usually manage without the ear plugs. I have no problems watching telly (though earplugs still required when visiting the parents), but I can't ever have it on in the background - even muted - I have to concentrate solely on it or switch it off. And I still can't watch the opening credits of 'The Big Bang Theory' without closing my eyes. As Skippy says - don't give up hope. It is early days for your husband and things will probably improve. x
  13. Susan

    Headaches

    Krislwal Sorry you are so full of fear - it sounds more and more like that could be the root of your symptoms. Sorry I haven't got any adequate answers for that - I did not suffer any prolonged health anxiety myself - I did have my moments but they were short-lived and infrequent. If you have not already had some counselling maybe that is the way forward. I had some counselling when I was about 10 months out - just wanted to talk the whole experience through from beginning to end with someone who was not friends or family. And let go of the superwoman thing - give yourself a break! I hope things get easier with time. X
  14. Susan

    Headaches

    Hi To pick up on what Skippy said, you can get rebound headaches even with over- the-counter painkillers like paracetamol (Tylenol) if you are taking them often over a long period. So it's probably worth trying to rule this out first, with the help of your doc if you aren't able to cut down on the Tylenol. As to what's normal, who knows? I'm 2 years out and still get frequent headaches but luckily they are generally low level and I can get away with only using paracetamol occasionally when I have a more severe one. I hope you get it sorted. Xx
  15. Hi TJRCGG As others have said it is not unusual to be very tired in the early months following a bleed. Just a thought - I see in another post you say your husband is still on the SSRI sertraline for anxiety. This drug can have the side effect of causing fatigue. I know I can't give medical advice and am not qualified to do so but just wanted to relate my personal experience of taking an SSRI. I took a different SSRI (citalopram) for a short time a few years back (prior to my bleed). One of the side effects for me was fatigue - for the first couple of weeks I slept for around 16 hours a day and for the 10 weeks I was on it I was tired/lethargic throughout the day with insomnia at night. I could not function on it at all and decided to taper off with the advice of my GP, and my energy did return. Side effects seem to vary from person to person - I know friends who have taken an SSRI and not suffered this effect - so I am not suggesting that this is the cause of your husband's fatigue, but just something to consider. Always consult your GP if you wish to make any changes to prescribed medication. Amongst other symptoms, I suffered fatigue and insomnia for months following my PM- NASAH (and still do to a lesser extent 2 years on). From 4 weeks on I was not on any drugs other than my usual BP meds, which I had been taking for a couple of years prior to the bleed, and the occasional paracetamol, so I guess that my symptoms were all the effect of the bleed itself.
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