Joan

I have an appointment with the neurologist next week. I find it is now becoming more annoying. It started as something that only affected me in the morning, and when I manually opened my eye it was fine. Now, if it is towards the end of the day I can feel it "wanting" to close. There are, of course, other things beside an SAH that can produce these symptoms, so rather than going to the GP am going back to the neurologist who has been seeing me on and off since my SAH. Joan

Thanks Janet; I will. Hope all is well with you. Am back to working in the client's office three days a week (although it will ideally come down to two once the new team beds down). Things are otherwise OK, bit difficult o some fronts but that is...well life, I guess. Joanxx

Hi all - The wanderer returns and am coming to consult The Oracle (eg, your collective experience) on something that has cropped up recently. When I went for my last hospital visit (this registrar was 18, an improvement on the 12 year old) I actually saw what my poor brain looked like before the surgery and the reality was, there was very little of it left that was not doing the breaststroke in the bleed. He did warn me that while I'd had a miraculously lucky escape, sometimes symptoms don't appear for a long time afterwards, but i think I have one and after searching the site didn't see anything similar. But it may be elsewhere in the discussions so apologies for boring the pants off everyone if its been covered and just point me in the right direction. Or the left one, as the issue is that my left eyelid. In the last 4-6 weeks it has difficulty opening by itself if I have been asleep or having one of our little SAH "time outs" also known as The Profound Siesta. I can open it manually, and then it blinks Ok but it feels heavier than the right lid, if that makes sense. To me when they are both open, I can't see any difference between the two, other than the sensation of heaviness. If I get tired, it does start to close of its own volition. Don't know whether anyone else has experienced similar, if this is just "one of those things" I'll have to learn to live with, or if its time to hassle GP/neurologist. Thanks, Joan

Same problem here (with the dry skin) but think in our case it was the change of diet when we went on the regime because we were limited to a tbsp of oil a day. Found that generous lashings of Dove did the trick! Joan

It has been 17 months since my SAH, and tiredness is still an issue - but I also get up very early for work (530) so by 8 or 9 PM I am pretty much all in. From time to time, I simply have to have a nap and this can be at any time of the day and have had the odd day where I need to spend several hours in bed. If we go out for lunch and have a drink or three, I will usually go home and sleep through to the next morning (actually resulting in waking up feeling tremendously refreshed). I used to fight it, but after reading through everyone else's experiences on the site, I just relaxed into these bouts of tiredness. Oftentimes, a 20 minute catnap is enough to restore my energy. But it does, in time, improve. Joan

I thought I had posted on this topic, but once again my memory tricked me. Am also one of the self-employed. I do economic research and analysis as well as some communications strategy for a big US law firm that operates internationally, so the brief I cover is very broad and interesting in its diversity. Because I can work in bed (did so after successive knee surgeries) I started working again as soon as I got out of hospital, with plenty of advanced napping inbetween. My client, who knows me well, was very gentle in their requests for the first few months (I am on a retainer with them). 14 months later am nearly nap-free, although as we all know when The Tiredness hits, nothing sort of eating my own hair would keep me awake. The workload is heavy but am totally in control of how and when I do it, which makes a major difference to stress levels. Joanxx

I hate to say this, but I can't properly remember so am hoping Robert does. I did get my hair done that day so am imagining we went out. Good grief. Think next year will plan something MUCH more memorable!! JXX

Cal -- Do you remember what you were doing when the SAH occured? Did you feel a pop in the back of your head? I was on an exercise bike at the gym; I suddenly felt the back of my head and neck go agonizingly stiff, with pain on each side of my head. It abated somewhat, and I managed to walk home and put myself to bed. Then first one, then the other side of my head "exploded" in pain. It felt like I had been shot and was the most painful thing I have ever experienced, up to an including delivering a 9 lb baby. The second one that hit, I passed out. When Robert got home that evening, someone (not the conscious me) told him "I had a headache at the gym and am resting". It was not until early the next morning, when he found me wandering around, hallucinating and confused, that he realised I was seriously ill. Did any of you have a drain that made the blood disolve? Like most of the other people on the site, I had nimodipine for 5 weeks. How long were you in the hospital? 10 days How long do the headaches last? 14 months later, I still get the odd headache -- particularly if under stress. This time of year, because I get sinus, is worse than in the summer. Also still suffer from periods of profound tiredness. But overall, am 100% better than this time last year!! Joanxx

It can be both confusing and distressing in hospital. Like Louise, I must have asked Robert about 12,389 times "what happened" when i was in hospital. My thoughts and prayers are with you both and I hope you start getting some clearer answers for all these symptoms and circumstances. Big hugs, Joanxx

Hope that things ease for you both. It must be such a difficult time and all I can do is express my support. Joanxx

Robert, who works with the pharma industry and knows a lot about drugs and their side-effects, is extremely anti-statin and when I got my high cholesterol reading was cautious in the extreme. On investigation it turns out to be a genetic thing (all my family have it to no obvious ill effect) but I do try to keep on the side of the angels, food-wise. After reading your posts, Keith, I'm even more convinced to give statins a miss. PS can you remind me where those questions are that you suggested for us when visiting our consultants (if I ever get to see mine). Thanks Jxx

I have to say my own reactions are much as Karen's. When depressed I can't motivate myself very well, even for basic things and become extremely self-critical/lose confidence. But at the same time, am not necessarily "tired" but rather lethargic, whereas the "brain fog" of tiredness is a much more defined event and when it hits nothing short of a direct nuclear hit could stop me falling asleep. It is frustrating at times because you do feel like you are on autopilot and someone else is at the controls.... Joanxx

Laura -- In the 14 months since my SAH, I have NEVER seen the consultant, just a set of registrars whose interest in neurology seemed peripheral, to put it mildly. I wondered why some of them even chose the specialisation. The first time i got really upset, because I had the same brusque jerk (sorry, there is no other suitable word) who dealt with me in hospital and told me I could go back to the gym as soon as I got out of hospital and just resume normal life like nothing had happened. The second one was somewhat better (eg, he had a personable manner as well as an IQ above room temperature) but was clearly reading my notes as I walked in and hence his knowledge of my case was...shallow. They told me diametrically different things about the aftereffects of what should happen. If it weren't for this site, I don't know where I'd be because it helped me have some context to what had happened. My GP is very sympathetic and if you have one with a neurology background, all the better. But I think many of us really, really emphathize with what you've been through. Joanxx

I found it helped to ask them NOT to massage my head when shampooing; it felt too weird when they did. Since then, the hairdresser keeps it short and sweet and so its not too bad. It just takes a bit of getting used to.... Hope you feel better -- I find getting my hair done helps my mood no end, but like Janet the cold really affects my head. Joanxx

Mag, sorry to hear of your loss and send all good wishes and thoughts your way. Am sure your presence, and strength, were the best thing that could happen to her then, and that her presence will be with you in memory and spirit. Joanxx