Karen
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NASAH What's Normal 1 Year On?
Karen replied to Graham Oxburgh's topic in Non-Aneurysm SAH or Perimesencephalic SAH
The battery analogy is a very good one .. I only managed 5 hours per day, in a paid working capacity post SAH... plus fitting in travelling to and from and housework/cooking, before and after ... and I know that I pushed myself to the absolute limit and I couldn't always remember the drive home ... which isn't good! x -
Hi Luke, So sorry to hear your news .... I'm just hoping that you've contacted Social Services/or you've been offered the additional help that you need? x
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Louise, many congratulations on your 17th year! It's been my privilege to have walked some of those 17 years alongside you and watch your confidence grow. Thank you for all of your support. Love and hugs to you. xx
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Luke, I used to have a sweet tooth before the SAH ... afterwards, I couldn't stand anything sweet, so I'm the opposite of your Mum. Even toothpaste made me gag and it would set my teeth on edge. Then I tried the more natural toothpastes with bicarbonate of soda that were salty and that did the same! It's still on a learning curve, even this many years on ... it's trial and error to be honest. I know of a few members who've had their "taste" senses altered after the SAH, so I can only presume that it's a bit of damage to the brain. I also know of someone who completely lost their sense of taste and another who said that everything, apart from mashed potato tasted of sewerage! However, I now feel (and I'm 11 years on) that my sweet tooth has partially returned and I'm learning to enjoy the odd bar of chocolate and slice of cake, but I can also say no to it ... it depends on how my energy levels are now ... but the short term craving of chocolate isn't always good when your energy is low .... The odd square/s of plain/dark chocolate is probably the better option ... it helps to improve your mood ... you will have to look it up! Have you tried your Mum with something like Flapjack? It has oats in it and the sweetness that she perhaps craves, but it releases energy slowly, rather than having energy spikes with refined sugar.... it's lovely! x
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Luke, I also had a thinning of my hair and very dry skin too, after the coiling .... I was told that it was down to shock and my hormones were all over the place too.... such is the brain and what it controls. It's all okay now.... Is she keeping hydrated and drinking enough? If she takes a bath and her skin is very dry, try Oilatum bath for dry skin (you can get it from supermarket) ... it's pretty greasy, it's not cheap and it will leave a bit of a ring mark around the bath tub that will need scrubbing, but it's great! .... very natural and soothing for dry skin. If I remember rightly, you can get this on prescription too or you used to be able to, but it's probably cheaper at the supermarket now, unless she's entitled to free prescriptions. I'm not sure what your Mum uses for her hair ... but try the Dove products ... they're pretty good and quite gentle on the scalp and hair ... Also, if nutrition is a problem, then perhaps a trip to the Docs to see if she's deficient in anything? xx
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Hi Sandy and welcome .... have you asked your GP or Southampton if these scans could be performed at Bournemouth or Poole Hospital? I'm also from Dorset and yes, I agree that it's a pain in the proverbial having to go to Southampton for a scan ... however, Wessex/Southampton Neuro are specialists in this field, whereas Poole, Bournemouth and Dorchester are general hospitals. xx
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Sorry Katy, I can't help you with this one .... you need to ask your Doctor the question. One size doesn't fit all post SAH and everyone's case history is different. I would imagine that the medics wouldn't scan you, unless there's a potential problem or they're following up with a scan post SAH and checking up to see all's well, but that's something that you need to ask your own Doctor to clarify. xx
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Hi Verna and welcome. We've all had the feeling of being scared that it's going to happen again. I can only say, that time is a great healer and your confidence does return. However, if your anxiety is severe and it sounds as though it is, go and visit your GP. Be honest with them as to how you're feeling, you don't have to cope with this alone and without help. You're not a failure to ask for help and the aftermath of a SAH is hard to deal with. Anxiety and depression are common post brain injury. Unfortunately, I wish I'd had the BTG info and hindsight and the knowledge that I now do about anxiety and if the brain has been injured it can also affect all parts of our emotional well being too ... chemical/hormonal imbalance which can lead to anxiety and depression. I struggled with everything and wouldn't give in to it .... However, I did eventually speak to my GP and I was put on a beta blocker to help calm things down. It really wasn't enough and I still struggled. I also had family problems and the menopause was giving me a severe kicking too. The menopause can give symptoms that mirror the fallout from the SAH, so if there are any ladies of a certain age who are finding life more difficult, please speak to your GP. HRT didn't work for me and it increased my headaches, so I tackled it alone for quite some time. I decided to go back to the GP this year and I've been put on an anti depressant called Sertraline. It took a while for it to kick in and you have to be patient with it, but I haven't looked back .... it's given me a better quality of life overall and I wish that I'd taken this route sooner, rather than being stubborn and thinking that I had to cope with it all .... I've learnt that taking medication isn't the sign of failure and to stop struggling with my faulty brain ... I also know of men on this site who struggled with anxiety and depression after a SAH who thought that because they were a man, that it was weak to admit that they were struggling. However, they did eventually see their GP as for some, they were the major wage earner and it was affecting their work and their personal life. For most of these members the medication helped to get their life back on track and to actually be able to enjoy life again. xx
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Lol Luke, I don't know about the warrior spirit, but when you have good family about you, it makes the world of difference! Yep, I've had two bleeds. I hope that your meal goes well, gently does it and I'm sure that your Mum will enjoy it! Ear plugs can be a good thing on family occasions post SAH .... or just a quiet corner ... I'm sure that it will all go well... xx
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Luke, bless you... I didn't have any information. I've had two bleeds too. I'm still here .... Glad that your Mum is doing well and cleaning! You know what? Get your Mum out in the car if you can ... take her for lunch or some nice countryside views.... if she's not up to walking, a wheelchair would be good ... contact your local social services.... they will be able to help you... I initially had a wheelchair ... it was borrowed from a friend with elderly parents ... it was the only way, that I could get out and get some fresh air. Getting out from these four walls was perhaps the best thing and only thing that I could do in the first year. Getting out and about, helped me .... it diverts your mind .... there are some times, when I still need to walk with a walking stick ... it's still a learning curve for me too. Take care, your Mum is lucky to have you. xx
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Luke, I have a neck left on my aneurysm from 11 years ago... I'm expecting to be re-coiled at some point. I've lived with this for quite some years. My aneurysm neck was quite small and at that time it, possibly posed more of a risk to insert more coils, rather than leaving it alone and cutting off a major artery. How's your Mum doing? xx
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Anti- seizure medication-???-UK
Karen replied to boozysuzi100's topic in Untreated/Unruptured Cerebral Aneurysms
Hi Suzi, I was on anti seizure meds for some months after my SAH and I can only speak from my own experience. I can only say that the side effects for me, were terrible and I was glad when I could withdraw from them and that process took quite some months and I felt pretty rough to say the least, as the withdrawal was worse than taking them and it was probably the toughest time in my life. I couldn't have carried out any work when I was on them or when I was withdrawing from them....so I'm a little bit biased and can't understand why you would feel safer on them? I would imagine that the American health system is a totally different ball game ... private health care and perhaps it's a monetary thing, but knowing what I know, I wouldn't touch the anti seizure meds with a barge pole .... if I didn't need to. I reckon that I lost 10 months of my life to them... I'm not sure why you would be worried about developing Epilepsy post surgery, as from what I can see, you haven't had a bleed?... I had seizures before and after coiling, but I never went on to develop epilepsy. That's not to say that it won't ever happen because of the bleed, but so far it hasn't and I believe that the percentages are pretty low. Wishing you the best of luck with your clipping. x -
Luke, I must admit, that even though I'm pretty savvy with phones and internet etc that I do prefer the "written word" with pen and paper ... I use a conventional A5 diary and post-it notes ... it has to be more visual for me and something that I can't ignore or switch off. I leave it in the kitchen and where I can see it. Even, when I'm writing a list for food shopping, I often leave the empty packets or goods in front of me .... yesterday I had a tub of empty Bisto ... jar of chilli powder and a can of deodorant ... I then write those onto a shopping list, before I re-cycle them. I'm still thinking of getting a chalk or white board to be honest, as I still need things to be visual, in order to remember them. x
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Good luck Ian and keep well! x
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Win, I think that it's a man thing to be honest and sometimes the way that they've been brought up .... Partners/husband's are all very different people, whatever their sex...some are more accepting as to what has happened and work with it and their partners and others would prefer to put it out of their mind and try to forget what has happened.....that's perhaps how they deal with it. It's not always easy to work with a partner that does decide that all's okay and have been told that you've been "fixed" by surgery .... we all know on here, that's not the case. There's a lot of talking to be done and a lot of tears to go through .... on both sides... and communication is the key. I still don't have the magic answer. x
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After being given calcium blockers
Karen replied to Evelyn's topic in Subarachnoid Haemorrhage Discussion
Hi Evelyn, Lovely to hear from you! I was found to be severely calcium deficient post SAH. I've been on something called Adcal D3 for about 10 years now. http://www.healthline.com/health/calcium-deficiency-disease#Hypocalcemiaininfants5 Hope that you manage to get the problem sorted out. x -
Travel Insurance for Brits travelling abroad
Karen replied to Peter's topic in Advice & Tips/Healthy Living/Benefits
Hi Peter, I'm truly sorry if you feel upset that one of our Moderators has removed the individual brokers name that you used and it's never our intention to upset any member. Insurance brokers can be found in most areas. The use of an insurance broker will help to do the leg work on a persons behalf, if needed, but often a broker will charge a fee for their services, so hence the edit to your post. If you let us know what insurance company your broker has used to underwrite the travel policy, once you know, that would be absolutely fine and I hope that you will let us know, as it's very helpful information. Many thanks. -
Win, you're lovely and I'm glad that when you have a wobble, that you feel that you can come here. xx
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I think that many of you have perhaps heard about or you've seen the Stroke Awards publicised on Behind the Gray. https://www.stroke.org.uk/what-we-do/life-after-stroke-awards I would just like to say, that I believe that everybody, who's suffered any type of Stroke/SAH, is completely worthy of an award and over the years, I've seen a lot of courage and humanity on Behind the Gray. There are so many members who've had to go that "extra mile" and who still give support to others and that includes our Moderators, who are a complete joy to work with and I'm blessed! I applaud all of you, for your support and the help that you give, despite your own problems .... You're all very special and valued. I've had the privilege to see many members move forward from the very beginning of Behind the Gray and I've watched them struggle, trying to find answers and at the same time, re-build their lives and find their new "normal"... We also have Carers on this site, supporting their partners and family and that's been an extremely humbling experience too. However, if there was one member to pick this year, for the 2016 Stroke Awards, it was our Win ....I can remember Win's daughter joining Behind the Gray and how very poorly Win was and still in hospital .... I just look at Win now and can only say "Wow!" I know that Win still struggles, but "way to go girl!" Win was nominated by Behind the Gray but unfortunately she didn't win her category ... but to us, that really doesn't matter as Win is a winner and will always be a star in our eyes! Macca wrote the following as a tribute to Win and how we feel about her .... "You are an inspiration to us all. When I first joined this site, forlorn and feeling sorry for myself, you made me realise there is life after these events and that there is always someone worse off than ourselves. Your bright and breezy, lemon squeezy attitude brightened my days then and it still does now. You always have words of encouragement regardless of religion, colour or creed or status. Also, it matters not where anyone is in the world, you are a very giving and selfless lady and you command my utmost respect. Your humour with CarolynUSA is reminiscent of Victoria Wood and Julie Walters or Dawn French and Jennifer Saunders. It injects laughter where otherwise tears would flow and that can only be a good thing. You are always pleased for improvements in other peoples' situations but never moan at your own. That is so special Win and I just thought you ought to know it. Bless you just for being you - you just don't know how much the rest of us appreciate the values and humanity you bring to us all." On behalf of the Team at Behind the Gray, I would like to wish Win, a very happy SAH Anni-versary! .... and to also thank you all, for your kindness, humour and support.... You're all truly, very special people. xx- 5 comments
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UK Based conference on SAH - September 2017
Karen replied to Daffodil's topic in Advice & Tips/Healthy Living/Benefits
I can see that the lovely Lesley Foulkes will be speaking.... she was one of my neuro specialist nurses at Southampton and has always participated in life post SAH/research and has contributed to many medical papers and still helps to run the support group at Southampton, as well as doing her day job.... I've got a lot of admiration for her. I'm not sure if the Brain and Spine Foundation will share with us .... they're a great charity and I would imagine that any info, would be on their website after the event, so if anybody finds a link to that info, just post. xx -
Congratulations Carolyn on your 2nd anni-versary and it's been my pleasure getting to know you! .... sending love and hugs. xxx
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I'll keep you all updated with any news/results.... x
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Surgeons in Southampton are trialling a new drug based on a chemical found in broccoli to try to improve outcomes for brain haemorrhage patients. Diederik Bulters, a consultant neurosurgeon at Southampton General Hospital, and his team will assess the effect of experimental drug SFX-01 on patients who have received treatment for a bleed on the brain known as a subarachnoid haemorrhage (SAH), which is a type of stroke. SFX-01 is a synthetic form of sulforaphane, a small molecule that occurs naturally in the vegetable and is part of a group of chemicals found in plants – phytochemicals – that are strong antioxidants and can help regulate some of the body’s functions. To read the article in full, please click on the following link: - http://www.uhs.nhs.u...e-patients.aspx -
Behind the Gray has been approached by Southampton General Hospital to help publicise a clinical study launched on Monday 23rd May 2016. "Surgeons in Southampton are trialling a new drug based on a chemical found in broccoli to try to improve outcomes for brain haemorrhage patients. Diederik Bulters, a consultant neurosurgeon at Southampton General Hospital, and his team will assess the effect of experimental drug SFX-01 on patients who have received treatment for a bleed on the brain known as a subarachnoid haemorrhage (SAH), which is a type of stroke. SFX-01 is a synthetic form of sulforaphane, a small molecule that occurs naturally in the vegetable and is part of a group of chemicals found in plants – phytochemicals – that are strong antioxidants and can help regulate some of the body’s functions." To read the article in full, please click on the following link: - http://www.uhs.nhs.uk/AboutTheTrust/Newsandpublications/Latestnews/2016/Surgeons-trial-new-drug-to-help-brain-haemorrhage-patients.aspx
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Hi Jan and welcome! It does take a while to adjust to the "new" you .... You kind of have to compare yourself to the person that left hospital and not the person before.... it gives you a better perspective and something more achievable. However, it does really get better and you will find, like most of us, that time is a great healer .... you will achieve more and more .... it's often baby steps, but you will get there. My aneurysm isn't completely "fixed" .... I also have another abnormal artery on the other side of my brain, but I'm still here .... alive and kicking ..... 11 years on. Try not to think that you are a ticking time bomb .... a lot of people will have aneurysms and won't be or never be aware that they are present ... those smaller aneurysms, will probably never pose a risk in their life time. I hope that you will give yourself time to heal .... from what I see on this site, it probably does take at least 2 years to adjust and to come to terms with what's happened to you. Be kind to yourself and understand that what you've gone through and are still going through, is pretty major and it will take a period of adjustment. However, it doesn't mean to say that you can't have a good life, post SAH. Take care lovely and I'm glad that you've found this site helpful. Hugs to you....K xx
