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Alison Q

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Everything posted by Alison Q

  1. Hi Sarah, So glad that you have joined this forum, you will get lots of support as we are all in/have been during the early days. Your poor daughter must feel so scared about losing you, she is being so brave too. Have you had an Occupational Therapist come to see you? If not, please ask your GP so she can help. I found mine so helpful - she can bring equipment such as a kitchen stool, bathroom etc. to help you (me!) due to double vision, she can help with anxiety and talked through things like writing notes, a notebook etc., she did some relaxation exercises to help stress, she helped me with a disabled badge and bus pass and about PIP benefits to help the form etc. etc. She also arranged the speech therapy lady to come and do some word exercises and help to get my speech better, also ideas of brain apps to help etc. Loads and loads of help and they were so lovely, especially when I kept crying! When I first came home it is all so awful and everything has changed, so please make sure you get all the help you need. Over the next weeks you will soon start to feel better and start to feel stronger and more accepting of what has happened. Stay strong, Sarah Alison x
  2. Hi Chloe, I also talked to my own GP about my headaches as they still continue and I was concerned about codeine. However, she was lovely and her view was that the pain is not caused by the painkillers and it is perfectly normal to continue with headaches because I am recovering and will be for some time. She feels that if I have pain she is happy with paracetamol and codeine because it will help me feel less pain. Very down to earth! My Occupational Therapist agrees with this too and thinks headaches are normal after annie and SAH So I follow this and view each day how it is - no pain equals no painkillers, achy headaches just paracetamol, if stronger pain add codeine 1 or 2 depends on level. We all get told different on here by our GPs and health officials :confused: Hope you get some sanity from your horse Alison x
  3. So glad that I've read this thread and everyone is suffering like this too! I think Penny and Karen practically described everything for me already One of the worst things for me in my family is when more than one person is talking to me. My brain cannot deal with more than one thing so means I cannot answer any of you. Same for when several friends and family arrive and all talking at the same time - I don't hear and understand any of it! As for the TV, if that is on at any time when someone speaks I can't deal with it, the TV can only be on quietly and when I focus on watching it alone. I feel really angry with the TV intruding into my head! The hall clock is irritating too! Definitely this heightened sense of awareness is true and causes me confusion. Would love to know if there is a medical reason.
  4. Good luck Susan! Try and remember that you have a piece of paper with you and peeking out of your bag or purse! Last week I went to my Consultant, very proud that I had prepared a list of questions beforehand over the days before and all written nice and large so I could see them. Only I forgot about my paper totally in my appointment! Let us know how you get, Alison x
  5. Hi Gemma, I really enjoyed reading your story, thank you so much for sharing. Sounds like you are doing brilliantly, particularly going back to work full time - so well done you! Best wishes, Alison x
  6. Hi Paul, Welcome to the forum! Lots of friendly people on here who will help you and give you advice. You've joined the right place As for the fluffy head, yes yes yes I am 3 months out and have lots of head pain, twinges, dizziness, spaced out and very tired. This is all normal. The most important advice is to rest and listen to your brain. It will definitely tell you if you're doing too much! Alison x
  7. Hi Lauren, I'm still there too so you're not alone! I also worry about hydrocephalus at the moment due to my head pain and of course I think about any pains elsewhere too. My Occupational Therapy lady recognised my anxiety and she comes regularly to do some anxiety exercises using different parts of the body. I find this really helpful. One of my friends also visits to do some hypnotherapy and this is really useful too. I am really relaxed when she is with me but the point here is that I should use the thoughts and scenarios to be able to do it to myself if I get worried. For example, a certain place or a name should mentally bring in happy thoughts and cause me to relax. Certainly think about hypnotherapy as it might really help you too. Alison x
  8. Hi Kate, I am thinking of you, I really am. I haven't been to my doctor yet either about my crying but I am early days (10th October 2013) and suffering the same as you. I know how you feel about working and worrying about the future. I ran my own company from 2005 and sadly I closed this down on 31st December 2013. I know that I am just not able to be an IT contractor, travel and be confident with multiple companies and new people. Of course, the first problem is that DVLA have stopped me driving so I can't get anywhere And now I have sold my beautiful Freelander I have been reading (or trying!) to read the book "The Dented Image" and you know what, I am becoming more positive about my new life. I really recommend it, particularly the last chapter about having a new and different life and being happy instead of fretting and feeling sad about the old life. Just remember you are not alone and you are supported here. Alison x
  9. Thanks Penny. Don't worry, I guess I am only asking whether other people have had similar head pains if touched, really just to reassure myself I am not alone. I do understand not to expect medical advice on this forum. My GP is lovely but not experienced in SAH. I am seeing my Consultant on 16th January, 2 weeks after my angiogram so I do have lots of questions for him and I m hoping for some decision.
  10. Hi Stu, Welcome! I am new too - had my ruptured aneurysm and SAH on 9th October 2013. I also joined eventually after skipping around for a few weeks! I am so glad to join and I know you will be too - this forum is a fantastic place to be and you will learn loads from all the others. We are very early in our recovery and there are lots of people who help us Look forward to hearing from you soon, Alison x
  11. Hi everyone, Apologies in advance for this thread as it sounds very silly but I have decided to ask about touching my head! I am permanently in pain with my head and various headaches and I am sure this is normal with a ruptured aneurysm and SAH. My consultant was still deciding to to do "clipping" because it is difficult (?) within my left MCA and on January 3rd I am having yet another angiogram to see if this blasted clot has decided to move or get smaller! Anyway, my worry is touching my head. Even very lightly washing my hair or just a light touch with my hand causes my head to be extremely painful. It can be on top of my head, temples, back of my head, my ears, my nose and even worse it is my eyes, in fact sometimes it feels like my eyeballs are being pushed out. My nose feels painful as if it has been hit by a ball. Strangely my right side at my temple is worse than left which is where the clot is. It also seems like my right eye has drooped slightly. Sometimes it seems like the eyeball then other times I wonder if it is the eyelid? But would this be the left clot or would it be the SAH? Does the blood go all over the head everywhere within the SA space? I also had an horrendous headache last week and I very nearly went to A&E as it was above my right ear and was worried I had a bleed on the opposite side. Fortunately it calmed down eventually after 2 paracetamols and 2 codeines and went back to its normal achiness and I stopped feeling sicky. Sorry to ask lots of questions and I guess I don't know very much. I know I am seeing Neurosurgeon on 16th January to see what happened in the angiogram but I would love to hear from you all who understand and have experience of all this head pain. Thank you and I hope you have all had a lovely Christmas
  12. I have just the whole thread as I am new here and didn't know the full circumstances. I am so very sorry to read all this about Richard and you are a very brave lady Zoe. Sending thoughts and prayers to you and all the family. Alison x
  13. Hi Karen, I got this book from Amazon and I've started to read it. Very easy to read on the eye, even with my difficulties I hope other people enjoy it because it is brilliant and tackles the issues that we are all having as a "survivor". I have found the best way is to just read for a short time - any longer than that and I can't cope. Alison x
  14. Like this thread This is the early months for me (SAH 9/10) and I would say that I have certainly not accepted the new me yet. In fact I am still finding out what has changed about me. As well as the me who can't read properly, remember words and forget everything all the time, I get very stressed about changes or things going wrong, even minor things. I get very upset and I cry really easily - usually at least once a day. I have trouble talking to people about myself, particularly trying to answer questions. My Occupational Therapy Lady has definitely put me down as having anxiety. At the moment I think of all the things I can't do any more. I would really like to start to think about the new me and find some happiness in how I am and be comfortable with a new life and be a "survivor".
  15. Hi Chloe, I am exactly the same as you, my head will tell me exactly how much I should be doing. And I am still taking paracetamol and often codeine to stop the pain every day. Unfortunately, from what I read for everyone, this is totally normal after the SAH. I was told by my doctor that it may take months, even years, for all this. I am sure some other people from here will join in and confirm how they have felt. So ..... your head, like mine, is telling you to rest, take things easy and remember to relax Alison x
  16. According to the Government website (DWP), PIP can only be paid after you have had a disability for 3 months and it will last at least another 9 months. It takes them so long anyway so start the process going after 1 month and you may get something eventually For example, they told me it will take them 4 weeks to even just send the form
  17. Daffodil is right about being self employed. I am now wishing I had taken out some kind of health insurance. As always, when I started my company I didn't have much money and therefore didn't pay any accident insurance because it is a lot of money and of course I felt I was fine and nothing wrong with me. I also didn't pay private health insurance for the same reason. For a few years all was well. Then I just went downwards .... I had an accident in 2009 and fractured my spine when I fell off my horse, in 2010 my dog knocked me over and fractured my knee which resulted in 6 operations and this year a total knee replacement - and then of course the aneurysm and SAH. Unfortunately, no benefits or sick pay at all So to anyone who is self employed - please do pay all the insurance! My occupational therapy lady has suggested this new "Personal Independence Payment" from the government as she thinks I can get it due to mobility and no driving and maybe care from my husband. Its worth you looking into it. Yes it is taking them ages (takes them 4 weeks to even send you the form) but persevere! Everyone has a lot of advice and is really helpful for people like us who are in such early days. I am still at the "trying to get back to how I was" thing - so just need to settle down and do things slowly. Alison x
  18. Hi Chloe, I have just seen your thread - so sorry to read you are so young! You will get lots of support and advice from here I was so pleased to see that you have been able to ride your 18 year old horse, how fantastic that must be and being with your horse will really make you feel better. Unfortunately I have been told that I must not ride, which is very upsetting for me as I have 2 geldings of my own - a retired 23 year old and my new 4 year old who was started and just beginning hacking out with him. I had a ruptured aneurysm and SAH on the day after I had been riding - 10th October 2013. Like you, not being able to drive causes me a major problem because I used to drive daily to my horses and feed, groom, poo picking, riding etc. at a DIY yard. I am now looking into getting the horses somewhere else where I can walk to them and maybe a full livery. Eeeek - lots of money and I am not working I keep asking friends and family to take me to see them and just being with my boys makes me feel happy. Do you feel the same? I am older than you of course, I am 49 years old - but I still think of myself as young Make sure you relax and stop trying to push yourself. I have been out 4 weeks from hospital and are just starting to realise how much I need to get everything right. I am tired easily, my head hurts all the time, feel dizzy and kind of spaced out - but I make myself see the horses. But afterwards I feel happy and then sleep better. Take care and do let me know how you get on. Alison x
  19. Hi Kate, I had my SAH on 9th October and also had Nimodipine for 21 days in hospital. I have been off it for the last 3 weeks and to be honest, I still have my headaches too - even though I am taking Paracetamol and Codeine every 4 hours. I tried to just take Paracetamol on its own to see if the Codeine are causing it but no, more in pain I now realise that this permanent is normal for having had a SAH. Like Skippy said, drink lots of water and make sure you relax. It definitely hurts more if you're stressed, upset or try to bend, lift things up etc. Also watching too much TV, bright lights and reading too much. It's taken me a good few weeks to understand what I need to do - so good luck and I am sure you will soon feel better.
  20. I love to hear from everyone and their experiences - and now there seems to be a few of us who were transferred to LGI. But even more exciting is that Doodles is from Huddersfield - and that's where my horses are! This afternoon my eldest son took me to see my horses and I sat in the field (cold and muddy) and had some cuddles. Not for long and of course I get tired - but it means so much to me. The worst thing for me is not able to drive and therefore I can't see them every day, this was the "old me" who drove every day to groom, poo picking in the field, ride and feed! Somehow I need to accept this and stop being upset about it. But today was GOOD and my horses were fine. And you know what? They didn't care that I talk rubbish and get some wrong words
  21. Thank you for your lovely messages. It is so nice to hear your experiences and it really helps me when you make suggestions. You are all correct about the relaxing and not doing too much, I have to follow your advice. And I liked the idea of getting family or friends to ring for me, I find talking on the phone quite difficult and things get worse when finding the words and then become stressed. Thank you to you all xx
  22. Hello everyone. It is very early days and I am very anxious about what has happened to me and what might happen next! I have joined your Forum and feel this is the place for me! I am really looking forward for any information. Confirmation: "Large Acute infarction of Middle Cerebral Artery territory, 13mm aneurysm of left MCA bifurcation - thrombosed". Basically they say it was an aneurysm that ruptured causing a subarachnoid haemorrhage and I also had a stroke? :confused: I was taken by ambulance to Leeds General Infirmary and was 1 day in Intensive Care, 8 days in High Dependancy then 3 more weeks for the Neuro Ward. However, they haven't done any operation yet and there seems to be lots of discussions and debates over what to do! They told me I was rare - I have stopped bleeding and have a clot but for the moment it has remained the same. I was told I was stable, GCS15, moving all limbs normally, clinically well so I was discharged on 4th November 2013. However, I have been home for 3 weeks and my headache is permanent and I take paracetamol and codeine every 4 hours. It is awful and I feel nausea. My neck hurts, my eyes hurt, I am dizzy and kind of spacey, I am tired all the time. I have problems with my speech and short term memories and just lose loads of words. I can write well and hear fine - but seems to be some reading and spelling too. They get worse later in the day. I am seeing a speech therapy lady who is lovely! Of course, not allowed to drive and to be honest I feel ill anyway so stay indoors. Thank you for listening to all this - really appreciate this site and I hope that many of the friends on here are able to give me some advice and information and make me feel better
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