Joan

Sorry for the tardy response, be delighted to help out. Joan

I amalso really glad to hear I am not alone. Lately my memory seems to have gone walkabout along with the inner "engine". Fortunately the Apple system has these post-it notes that I now use to write down things I have to do as soon as they cross my brain pan, rather than -- as before -- filing them away and getting to them later. They have, however, no quick fixes on the motivation front. Maybe this will just have to be one of those things you have to work with. Jxx

As I am always cold, I get the bath water as near to poaching as possible. The body temperature thing has been exacerbated by the weight loss, although I don't believe that is the whole story as I was cold even when extremely fluffy. Joanxx

I think the problem you will find is that while neurologists who deal in this area are familiar with the connectin between Marfan's Syndrome (similar to the hypermobility issue) they are less up to speed on the broader relationship with hypermobility. I eased their confusion by referring to myself as having "atypical Marfans" - eg, many of the symptoms but not the long, lean frame which is characteristic of Marfan's sufferers. Interestingly, the hypermobility was first diagnosed when I went to the physio with a back problem. He asked me to touch my toes and was shocked when I put my hands flat on the floor. Asked if I had done gymnastics and I just laughed (I was a plump little person at that stage). Hence he probed further and discovered my extreme joint bendability... JoanXX

Does anyone find that they have occasional feelings that things in some areas of functioning are going into reverse? Not in a major way, but I am finding that I am 10 times more forgetful lately and that wasn't something I noticed immediately after the SAH (of course, I could have been every bit as forgetful but just forgot to observe it!). Sometimes I feel as though I am sliding backwards (loss of focus, feeling of disjointedness) and other times, just fine and feeling 1000%. Maybe this is normal "for now" or rather, "for SAH"? Joanxx

Have to say I used to LOVE roller coasters; and although otherwise OK, I have zero inclination to go on one now. Age or SAH, who knows? Joanxx

Clare - just read through your posts; am glad your mum is progressing and hope that she continues to improve. As many others have told you this recovery is very individual, but patience is rewarded. All the best, Joanxx

Jenny - I had heard the same thing, suffer from a lot of the symptoms your mom has and am hypermobile (eg, double jointed) to boot. I struggled to get a medical explanation. But when I went to see the guy who operated on my knees (a degeneration caused in large part by my double jointedness) he knew all about it. The way he explained it is that people who are very flexible are so because they have excessive collagen in their blood. On the upside, this can make them look younger than they are. On the downside, they tend to be clumsy, fall a lot (hence the injuries to the knee), bruise like a peach, drop things etc because, basically, their joints are not as "set". The other big downside, and its relationship to SAH is that it is, of course, the bloodstream that carries the collagen, and just as the collagen makes skin and joints "soft" it does the same thing for the walls of your veins. Hence a proneness to aneurysms. He (the surgeon) had seen it a lot, I gathered. It certainly was not news to him. Don't know if this helps but for me, who is hypermobile, it explained a lot.... Joanxx

Have always been a tad on the emotional side (cry at commercials) so SAH has does nothing for my self-control in that regard....

Think it made a difference to my painting (positive) but not much impact on my writing. I struggle with reading longer books, though, whereas before SAH I was a passionate reader...Joan

John - most of the people on the site will tell you I am no shrinking violet (how could I be, being originally a New Yorker) but like you, I find post-SAH I go to great lengths to avoid a lot of social encounters unless they are (a) small and ( people who are old, old friends. I think this is related to a loss of confidence which I didn't notice so much as my partner did after we watched a DVD about SAH. Joan

Have to say I feel the cold a LOT more than I did before. Some of this is down to weight loss but I feel pretty dumb walking around in a sweater when everyone else is in beachwear!!

Congratulations Keith; hope the cholesterol tests are similarly positive. Joan

Dear Twin -- be sure and let me know the answers, as it is clear the biology is destiny thingie is working all too well.... Joanxx

Hi Sue -- glad I can raise a smile; you are right, it is the best medicine around. Like you, I had a real problem with blood pressure in hospital in it being too low. Apparently they needed my BP to be at a certain level (something to do, I think, with helping the site of the coiling to heal and the blood to circulate away, but am guessing rather than know this for sure). It is still on the low side, although I do keep an eye on it on the advice of the neurologist. Joanxx

A couple of days before I had my SAH, I had some pain/rigidity in my jaw -- not surprising considering where the SAH was sited (at the base of my skull). Am getting some passing pains (very light) in the jaw area -- as I have an overbite and tend to hold my mouth "forward" as bit its probably not surprising but thought I would raise this in case anyone else has had similar symptoms post-SAH. It has been almost exactly 4 months since I had my SAH and so maybe more sensitive, in that so far the post-SAH symptoms have been confined to headaches. Am under a certain amount of non-work related stress, which could be part of it. Cheers J

I have to say, on the garlic front, that while Robert and I eat enuf garlic to sink a flotilla of vampires (as well as taking garlic pills) we still had high cholesterol when starting this diet. We are due to have our bloods re-done at the end of month. It will be interesting to see if, as the doctor has predicted, lowing weight will translate to lower cholesterol. I could kill for a cheeseburger (rare, with crispy bacon). Joanxx

Amen, Sue. I found a pack of fags hidden away in a drawer and had the greatest pleasure in pitching them. Hope I never, ever am tempted because it is the greatest feeling in the world to be free of an addiction. All the best, Joanxx

Well, we shall see on Friday, then, just how close this twindom runs. Spooky or what? Joanxx

Last week I asked the neurologist about whether it was OK to swim and he said definitely. But the whole suggestion (of a link between swimming and triggering fits) was greeted with derision by the doctor treating me at Charing X. Wish all these specialists would make up their mind.... Joan

I have atypical Marfan's Syndrome, which is marked by extreme joint flexibility (and in classic Marfan's, a tall, slender build which I sure don't have). Mine is so bad that I ended up having really early knee replacements because the joints had eroded. On the upside, I am extremely flexible althogh the fake Knees have trashed my career as a potential yogi. Marfan's is associated in some studies with SAH, because it is caused by an excess of collagen which is, of course, carried in the veins which it makes soft just like it makes joints soft. My knee surgeon was much more clued up on this link because he has seen it before. Does this ring a bell with anyone else? Are there other hypermobiles out there (which is really what atypcial Marfan's is....). Cheers Joan

Given Sami and I are Siamese Twins, i share her low BP too Joan

As mentioned illicitly in the Green Room, the insomnia that bedevilled me pre-SAH has returned and i don't know what to do about it. I accept that part of it has to do with family issues unconnected with the SAH (although these were present when I was sleeping like the Rock of Gibraltar in December). Find I wake up at what seems like 2-hourly intervals and even though I am tired, tired, tired can't get back to sleep. Sometimes I am so tired my eyes hurt. Usually i give up between 4 and 5 AM and just get up. In consequence yes, I am tired in the daytime but apart from spontaneous naps, just kind of soldier on. Am due to see my GP next week and will mention this to him, because it is getting kind of boring and suspect it has a lot to do with a lack of motivation I've noticed in the past few weeks. Joan zzzz

Hi Christine - don't feel bad if you want to rest a lot -- the best advice I got from the site when i joined, like you, having been released with next to no info. Its right to be concerned given something so major happened, but you have a supportive community here of really caring souls. All the best, Joan

I am afraid that, even with putting to dos on my computer calendar...I forget to look at the calendar!! Maybe the next step is writing it on my hand!!