Anne Fleming

I've written about this before but just wondering if anyone else on the site has experienced problems with distorted taste since their SAH. I find it hard to eat still as most food either tastes bluemouldy (bread,cereal) or like rotten eggs (veg etc). I tend to stick to dairy products which taste normal or other bland foods like mashed potato. I also have a bad taste in my mouth all the time. I think my taste has improved a bit since my SAH and I know now to stick to bland food and I've put on the weight I lost. I saw my GP this morning and she said there was no one she could send me to for further investigation on this as the neurologists and dietician have drawn a blank. She thinks nerves in my taste centre in brain were damaged during my rupture and if they repair, they will do so very slowly and it would take 2 to 3 years. This problem gets me down sometimes and I was wondering if anyone else has it or has heard of it? I've heard of people losing taste and smell, but if anything my sense of smell is very strong but a bit distorted too. Best to everyone Anne

Hi Karen After I came out of hospital for first few weeks I would go to bed at about 11pm and sleep thru till 10am next morning, something I've never done before. Now 14 months on I sleep pretty ok, go to bed after 12, get up about 9 (I work from 10-6) and maybe wake up once during the night. I did had very bad exhausting nightmares when I was on beta blockers (Propanolol) for a few months last year and also when I woke up after sleeping for the first few minutes I would have visual hallucinations and see things moving about the bedroom. All that stopped when I came off the tablets. Before I had the SAH I liked to have an afternoon nap at weekends and still try to fit one in if I feel like it. Love and best wishes Anne x

Hola Lucia, bienvenido, hablo espanol, pase unos anos en Espana hace varios anos. Me interesa saber mas de su historia y me alegro oir que ya se encuentra mucho mejor. Un beso Anne

Hi Donna That's good news re GP's referral. Like everything I suppose the tricky thing is getting started but you sound well on your way. All best Anne xxx

Hi Donna I lost a lot of weight in the first 6 months post-SAH as my taste was so distorted and I didn't eat much. When I started back at work after 6 months I too found that I was very tired so I ate stuff like nuts and chocolate just to get me through the day and have put on weight as a result which I now need to lose. I exercise very little as am so tired. My GP sent me to the community dietician after my SAH and though she can't suggest much to help with my taste at least I feel she is keeping an eye on me, at first to help me gain weight and now to help me lose it. I would say try not to focus too much on your weight just at the moment - be kind to yourself and pamper yourself. We've all come through such a life changing trauma, concentrate on how well you're doing. It seem doubly cruel to beat ourselves up over our weight when we've come through so much. Hope your GP appointment went well today. Love Anne xxx

Hi Lucie Congratulations and have a great day! So pleased to hear you feel back on track. Love Anne xxx

Hi Kim Welcome to the site. I'm sorry to hear you lost your dad to a SAH. I lost my mum in December 2001 to a SAH. She had a bad bleed and at first the local hospital was not going to do anything to treat her but then the RVH, Belfast agreed to take her and she had the coiling procedure done there. Sadly she had a second bleed soon after the procedure and did not survive. When I had my SAH in November 2007, as soon as I came round from the bleed, I just knew I'd had a SAH, like my mum. For me I think it speeded things up as when the ambulance brought me into hospital the doctor didn't delay and immediately looked to confirm a SAH. I'm pleased to hear you have made such a good recovery and look forward to hearing more from you on the site. Warm wishes Anne x

Re recovery, I find that nearly 14 months on, it's not so much the actual SAH event but all the symptoms that it's left. I think if I were symptom-free having the memory of the SAH event would have faded a lot by now. As it is, I'm reminded of it a lot on a daily basis and still trying to make sense of the whole thing. Worse still, I know I feel I need to comment on my symptoms to people eg I have to brace myself to eat as food has this rotten egg taste and when someone comments that lunch was nice or whatever, I feel obliged to say that I don't know as I can't taste properly. I think I'm turning into a bore and I am sure people must wonder why I'm not "over it" by now. I feel I must try to stop mentioning it. Does anyone else feel like this? Love Anne x

Yes I was told in the hospital after my coiling that it would take me 3 months to recover and get back to work. A couple of weeks later when I started attending the rehab hospital they had a much more realistic view of things and said that I had quite a big bleed and it would take at least a year to get my strength back and I could expect to keep on improving for another year or more after that. Maybe the neurologists who treat people in general hospitals aren't so clued up about the recovery of patients. I have a scar on my arm from where the drip was put in when I had the SAH and I can still see the scar 14 months on though it's still continuing to fade so hopefully the healing is still happening inside. Anne

Hi Debbie Welcome to the site. I've found it so supportive and everyone so helpful. You really feel you can ask anything here and there will be someone who's had the same experience or can throw some light on things. best Anne x

Hi Louise I think the nurse specialist post is new in hospitals and the Chest, Heart, Stroke nurse making home visits quite new too. I also went to Astley Ainslie for 6 months as day patient. Best Anne

Hi Scott Yes I'm shocked too by the differences in aftercare. I think I was generally very lucky with my treatment. Two of the things I found most helpful were the Nurse Specialist in Neurology at the Western General (Edinburgh) where I was coiled. I was told when I left hospital that I could phone or email her at any time with worries and I feel I could still do so 13 months on. The Chest, Heart and Stroke Association also get involved with patient care in Edinburgh after someone comes home and offer up to 6 home visits in the year following SAH. I'm not sure if it's the same in other areas. Best Anne

Thanks, yes I think getting the flu jab could be a good idea, will mention to my GP for next year. Wishing you a speedy recovery, Scott and Louise. Best Anne

Hi everyone Just wondering if anyone noticed that colds and flu tire you out a lot more since your SAH? I'm about 13 months since my SAH and was doing ok last autumn but in December had a nasty cold/virus and I am still feeling very tired and out of sorts. It's my first "lurgy" since the SAH and seems to have affected me a lot more than normal. Best Anne

Hi Caroline It is a tricky one. Your current lack of enthusiasm for your job could be down to fatigue and you may get your stamina back in time and then feel differently. You could think about giving it a few months to see how it goes though I'm probably an overcautious person! When I get tired post-SAH, nothing much interests me but I have to remind myself that it's temporary and will pass. Hope it works out whatever you decide to do. Best wishes Anne x

Hi Myra Yes I've wondered a lot since I had my SAH if my personality has changed. I keep asking people who are close to me and they say it hasn't but I'm not so sure. I think a lot of what I perceive as changes are more to do with getting overtired and when I do, I need to spend time on my own resting up or otherwise I could get ratty with people. Also some of my ongoing symptoms get me down though not all the time. Most of us have been left with some symptoms to contend with and even if they are mild, I think that can be quite wearing on a day-to-day basis. But yes I think having such a life-changing event happen to us must change us in some way. With warm wishes Anne x

HI Nurianna I typed in tens and contraindications on internet and got the text below. I'm not sure how to send a link to a web site so had to copy it. It seems to warn against using Tens over metal plates which may mean it is not good to use after coilng. I'm not sure but it may be worth your while checking to be on safe side. Best Anne Indications Transcutaneous Electrical Nerve Stimulation (TENS) devices are used for the symptomatic relief and management of chronic (long-term) intractable pain and as an adjunctive treatment in the management of post-surgical and post-traumatic acute pain problems. Contraindications TENS devices can affect the operation of demand-type cardiac pacemakers. TENS is not recommended for patients with known heart disease without a physician's evaluation of risk. Do not stimulate over the eyes or carotid sinus nerves. Do not apply TENS for 1. undiagnosed pain syndromes until etiology is established, 2. electrode placement that causes current to flow transcerebrally (through the head). Warnings This device should be used only under the continued supervision of a physician. TENS is ineffective for pain of central origin, (i.e. appendicitis, hepatitis). TENS is of no curative value; it is a symptomatic treatment which suppresses pain sensation which would otherwise serve as a protective mechanism on the outcome of the clinical process. Safety of TENS devices for use during pregnancy or delivery has not been established. For external use only. Electronic equipment such as EKG monitors and EKG alarms may not operate properly when TENS is in use. The user must keep the device out of the reach of children. Also, this device should not be used over metal implants or sleep apnea monitors. Precautions Avoid adjusting controls while operating machinery or vehicles. Turn the stimulator off before applying or removing electrodes. Long-term stimulation at the same electrode site may cause skin irritation. Use only for the specific pain problem prescribed by the physician. Effectiveness is dependent upon patient selection. Adverse Reactions Possible allergic reaction to tape or gel. Possible skin irritation or electrode burn under electrode.

Hi Nurianna Your situation reminds me a bit of an experience I had a couple of months ago. I had a gift voucher for a beauty salon and thought I would treat myself to a facial. I'd asked for a Guinot cathiodermie which involves electric currents stimulating the face (sounds like torture but I had one a few years ago and it's really good for skin and very relaxing). However when the therapist asked if I was wearing any jewellery/metal I said no but that I had some in my head. She refused to give me the treatment. Instead I had a facial with aromatherapy oils and massage - this was an unpleasant experience as I have a distorted sense of smell. I am not sure about TENS. The company which makes it will have guidelines if you are able to contact them directly. Has anyone else been refused a facial? Best Anne x

Thanks for your message Tina x Sarah - did you find the second clipping less traumatic than the first since your second anni hadn't ruptured? I would imagine recovery would be easier? Love Anne x

Thanks Donna. You're right. I think it's been a bit of a shock to me today but I can't spend the rest of my time worrying about what might happen next. I do feel deep down that having survived the first one, I've not been given a second chance in order to spend my time worrying about a possible next one, if you see what I mean. And I am reassured that they are keeping an eye on it. I'm really pleased to read that you're progressing so well. Well done! Love Anne xx

I had my first follow-up angoigram in March and have just had the appointment today to discuss the results. The coiling has worked well on the original aneurysm but I have been told that I have a small second aneurysm, in the frontal lobe area. It is too risky to treat it now as it is so small but I will be called back in March 09 for another angiogram to see what it looks like then. This has taken the wind out of my sails quite a bit as I am still getting over the trauma of having the first one and I don't remember any mention of this second one when I was in hospital last year. If it does get bigger I would like to have it treated I think. I'm still a bit in shock just now but just wondering how others have coped with having other unruptured aneurysms? And if anyone has gone ahead and had an unruptured second aneurysm treated? Warm wishes Anne

Hi Lilnan Both my mum and maternal grandmum died from SAH rupture and I had mine a year ago so the neurologist who treated me said it was the kind which is congenital and can be passed on through families. I was told that I was born with it and it could have ruptured at any time. When I was in hospital there was one other woman who had had a SAH and her mum had had one when she was giving birth to her. Luckily her mum survived and is now in her 80s. However the hospital was offering tests to her 2 sisters to check for aneurysms. I think only a small number of aneurysms are congenital. I would imagine that if you have been checked out and nothing found, then you should feel secure and try not to worry. Best wishes to you and your mum, Anne x

I have noticed that since my SAH I have difficulty understanding instructions or working out how things work. I still haven't mastered our new photocopier at work and even the new mouse on the computer had a different button from the last one and I couldn't work it out until my colleague showed me. Has anyone else noticed this and how do you get round it?

Welcome to the site. My short-term memory has definitely been affected. With remembering life before my SAH, I do remember it but everything that happened before seems very distant as if it all happened centuries ago in another world. It's a strange feeling. I wonder if talking to your loved one about shared experiences and memories or looking at old photos like Jess suggested might help. I'm a year post-SAH and things do get better but for me it's been very very slowly and it's only after a few months that I can look back and think "I'm better than I was then" as I don't notice it day to day or week to week or even month to month. Hope to hear from you again on how your loved one is doing. Warm wishes Anne

I'm almost a year post SAH (next week). My tiredness has improved over the past couple of months. I'm working full time and I can go out 3 or 4 nights a week though don't stay out late. I definitely don't have the stamina I used to have though but hoping it will improve.