Liz D

Hi Lynz So glad you're feeling better today. We can all have those kind of days. Take care Liz xx

What a story! What huge aneurysm but so glad she is well. I had my eyes tested 8 weeks before my SAH because I was having difficulties. But my aneurysm was on my vertebral artery. I was then asked to have them checked 5 months post SAH because of the blurred vision in the mornings. My optician told me that SAH's used to be diagnosed by them. They can not only see aneurysms but can see if there has been a bleed! He also said that they can see tumours. He now wants to see me every year. I never realised how important it is to have an eye test. I've got my children well drilled now in going every two years! Liz

Hi I would agree I would never self medicate but sometimes you have to go beyond your GP for answers or in my case I was fortunate to be able to go private. Hypothyroidism runs in my mother's family. My 3 children are hypothyroid and are being treated, fortunately for them they are being treated by the NHS. Her mother had it and so did she and her 3 sisters and one of her three brothers. They were all diagnosed in the forties and got back to full health and always have been treated with natural dessicated porcine thyroid as was my grandmother. It was my mother and my aunts that saw it in me and my youngest sister and kept on at us to keep going back to our GP's. But too many docs rely on the blood test. It was in discussion with an endo in Edinburgh (as the endos at our local hospital specialise in diabetes) that he suggested to my GP to try T3 only and this is working wonders for me. I suppose the point I was trying to make is the similarity of the after affects of SAH and symptoms of hypothyroidism. But when your thyroid is treated and fully working the symptoms go away. Unfortunately there are no pills for the after affects of SAH! But I still wonder what would have happened if I had the scan! Michelle hopefully your bloods will fine again. Take care. Liz xx

I've never been able to use the pill. I tried it when I was 17 but it gave me headaches and the lower part of my legs would go numb! I've never smoked and never had high blood pressure until last June, 4 months post SAH. I agree with Sami, I think mine was caused by a flaw in the artery but we think I have inhereted this flaw. My grandfather died from SAH, my 52 year old cousin died last June from a SAH and another cousin had a 2 aneurysms at 62 and survivied. My youngest sister is pregant, she's 41. they've been monitoring her very carefully because of the family link. She had horrendous headaches in her early pregnancy and would have to put an ice pack on the top of her head to help ease the pain. This scared me and I'll be happier when her son is born. She is to have tests to check her once he is born. She's tiny, she's only 5ft and I am hoping that she has a c-section. Maybe I'm worrying needlessly but roll on 10 June. Liz

I've just found this thread! I have hypothyroidism caused by a malfunctioning pituitary gland. My problems go back as far 1991 when I had my third child. My GP thought my sypmtoms were due to my thyroid. I went from a size 10 to a very "tight" size 14 in 8 months. My hair was falling out, from all over my body and I had lost a lot of my eyebrows. I would get terrible aches and pains, especially in my feet! the headahces were horrendous. I would get "brain fog" and this was when I had to start using lists or I would forget things. I would get very fatigued. I would get a "dip" in the afternoon and eventually this turned into a 2 hour nap! These symptoms steadily got worse. At first the "dips" were every few days but eventually they became daily. I have had quite few thryoid blood tests over the years! My TSH was 1.2 (reference range 1.2 to 5.5) my T4 was 11 (range 10 to 24). However, the important hormone is T3. You have to convery T4 to T3 (your liver does this) to have energy. Very few NHS labs will test your T3 levels if, in their opinion, you T4 is "in range"! For years I went backandf forth to my GP but always the same - "I was within range". They had no idea what was causing my symptons. I eventually went to see a very controversial (private) doctor, who specialises in hypothyroidism. He looked at my blood results and told me that they pointed to a problem with my pituitary gland. He suggested I pay for a scan, but I asked would this make any difference to treatment and he said no, so I declined (this would have found my aneurysm)! He started me on thyroid meds, I declined the synthetic thyroxine and opted for natural dessicated porcine thyroid. I have never looked back from then. The NHS will not treat me because of these wretched "reference ranges". The doctor I saw used my symptoms for a diagnoses. I now know I had a SAH when I was 37 (1997) and it was after that my energy levels, hair loss, weight etc really caused me problems. My aneurysm was on my left vertebral artery, beside my pituitary gland. I would say that I have headaches at 9.5 on the pain scale 0 to 10! I believe I have been having tiny bleeds since 1997, affecting my health. Once my thryoid was treated, I got my health and energy back. My headaches stopped. This was 2004. Then in 2008 the headaches reappeared, as did some of my hypothyroid symptoms. My health started to go down hill. My doc started to slowly increase my throid meds but there was no relief from my symptoms. Then I had my SAh Feb 2009. My thryoid started to give me problems again. The after effects of a SAH have very similar symptoms to hypothyroidism. After a lot of trial and error I now take Cytomel. This is just the T3 hormone. It looks like my body's ability to convet T4 to T3 is now nil! My weight had started to creep up again after the SAH but it is now going back down. The dark circles have gone from beneath my eyes and the days I am fatigued have nothing to do with my thyroid but are down to the SAH. However, if it were down to the NHS my thyroid still would not be treated because of their insistence of sticking to these "reference ranges", even though for 70 years people were diagnosed as being hypothyroid, from symptoms, until the ranges were brought in during the early 70's. Initially to aid diagnoses but to be used in conjuction with symptoms. But now the ranges are used as a diagnostic tool! My fatigue is now caused by either doing a lot of physical things ie travel or being in company for a length of time and have to concentrate. My fatigue is now caused by using brain and having it excercised. No longer do I have fatigue for no reason! Sorry I have gone on a bit but I was so surpised to find this thread! Liz

Hi Homer andwelcome to BTG. It took me 8 months to find this site as it took me months to be able to even sit at the computer. But I am so glad I did. Reading posts was like light bulbs going off all the time and I kept thinking "gosh that's me". 13 years is such a long time not have spoken with someone who has gone through this. But you've found us now and I hope you get as much out of this site as I have. Take care. Liz xx

Hi Saffy So sorry it was cancelled and not surprised you lost it but your sounding positive! Well done on still not smoking. My brother in law used one those electronic ciggies! He also swears by it, it's the way it lights up at the end that got me, lol! Since my SAH the few people I knew that smoked have given up, so that's another positive thing from my SAH! I'll have everything crossed for you in the hope it's not cancelled again. Take care. Liz xx

Hi Sally Welcome to the site. I was the same as you, I needed to hear from others that had gone through this and the nearest help group was in Edinburgh (35 miles away) so that was a non starter! It was a godsend finding BTG and helped me understand a lot! Takce care. Liz xx

Hi Saffy Only five days, I hope all goes well, I'm sure it will. Well done you, 8 days without smoking, with all that your going through! I've never smoked but seen some friends really struggle to give up but they got there in the end! Take care Liz xx

Hi Caroline I tried using a personal shopper in John Lewis in Kingston upon Thames but I found that even more difficult. I found myself getting irritated with her, but I think the lights were too bright and it was too hot for me. I too was a very strong person, very organised and could juggle lots of jobs at once. I would have faced goliath! Not anymore. I don't like it when there's confrontation and I cannot muti task anymore. I do get down sometimes because I am unable to do or be the way I used to. But my husband says that he can see "green shoots" of the old Liz! He say he sees flashes of the old strength at times, I don't! I agree with Karen, I think sometimes maybe we analyse things too much but sometimes it's hard not to! Liz

Hi Caroline This is very interesting. My daughter is getting married in June and I was fretting about my outfit. My hubby and I looked a lot of outfits and I couldn't make up my mind, so I visited my sister in Surrey and bought an outfit. I've struggled the last few weeks wondering if I've bought the right outfit! 3 times I've called her and told her I don't think it's suitable and 3 times she's had to calm me down and reassure me! I've never been like this before, I was alway very decisive! Actually reading these posts has helped me understand that it's the lack of confidence since the SAH that's the problem, thank you! Congratulations about the baby, that's wonderful news! Liz xx

Hi John My time lines are rubbish! I'll think something happend about 10 years ago when it was only 2 or 3, I seem to have lost reference points pre SAH. I also can forget things that have happened or conversatoins I have had. If I concentrate hard, I make a memory, but it can be tiring. It's when I do things automatically that I'm more likely to forget. I can still fill the washing machine and walk away. I come back and am confused why nothing has happened until it hits me that I forgot to switch it on! Friends will say "I do that" but I didn't before my SAH! I also had times when I couldn't remember what had happened or where I was. It's a funny sort of confusion, I wasn't frightened just confused. After it happend a few times I knew eventually it would be all right. At first it would take a couple of hours before the feeling went away. But now it happens very seldom and only lasts a minute or two. Last time was a few weeks ago, on the bus coming back from physio. I couldn't remember why I was on the bus or where I'd been. But in the early days I would wake at night confused and that could be scary. I had to sleep with the light on and even now I have to have the hall light on, just in case! I think of how I was this time last year and there is a world of difference and I'm still improving. You're still very early in your recovery but your doing amazing. As I said in a post to JayKay, I was only starting to stand in the shower and was still having difficulty walking down stairs and my bleed was a "significant" bleed not a catastrophic (phew that was hard to spell!). And yes you're right, thank god for second chances and wonderful families! Liz xx

Hi John It must be difficult having no memory of you SAH. I remember most things and did find it hard to deal with the flash backs. But time really is our best friend. I remember others saying that to me and now 14 months post SAH I can see that they're right. After my coiling apparently I took a disllike to one of the night duty nurses! I told my husband she moved my bed into the kitchen (my kithchen!) and was trying to harm me. Apparently I wouldn't let her come near me to give me my jabs! Because they coiled the artery I had tubes in the artery in my arm and my groin and needed a nurse by my bed 24 hours a day for 5 days and she was given extra shifts to do this! Bless her she came and spoke to me after they had reduced some of the meds and I wasn't so paranoid. She was absolutely lovely and I've no idea why I didn't take to her but she said it was most likely the morphine they were giving me! Liz xx

Hi Saffy Sorry to hear to your having a down day but it's completely understandable. I had my coiling done as an emergency and was in so much pain I would have agreed they do anything to me. But saying that, I was terrified on the morning of the op. I'd had an angiogram on the Monday, but was so full of pain killers and all sorts of drugs, that I really didn't and still don't really remember all of it. But what I do remember was that the coiling was easier because I was alseep. One jab to the hand and then 9 hours later being woken by a nurse. I was told that legally he had to go through everything with me, even though I said I didn't want to know and he had to tell me about all the risks too. Even this year when I had my follow up angio, I was a bag of nerves. When the nurse came to book me in I burst out crying after only a few questions but it was so much easier than I had anticipated. But it must be really hard waiting for the op, whilst to all intents and purposes you are actually well. But you're family are doing their best and keeping positive, which is what they have to do to cope. But we are always hear to listen and help as best we can. I really hope the time starts to go by quicker for you. Take care. Liz xx

Hi Zoe That's really good news, you must be so relieved. Remember to look after yourself too. Take care. Liz xx

Hi Maureen I'm the same. I can't plan ahead. I still feel detached from people at times. I've lost a lot of memories of my children when they were young. When some of the memories that do come back, I can't remember which of my children it refers to (I have 3, a daughter and 2 sons). I like to look at photographs of them because it stirs memories. I'm having counselling and it's helping a lot. My counsellor is giving me confidence that it will get better but it's baby steps. She keeps reminding me that I am recovering from a trauma and that what I am feeling is normal in recovery. You can access counselling through your GP, I got my counsellor through the occupational health department in my work, so I have no limit on the number of sessions I need. She's helping me understand the changes in me/my brain. I thought I was doing fine and had dealt with it but it was about 7 months post SAH that I started to realise that all was not well and that's when I started to feel very low and sad. It was my physiotherapist that suggested it to me, when at one session she asked me a question and I burst into tears! I started seeing my counsellor in January, 11 months post SAH. Take care. Liz xx

Hi I'm so sorry for your loss. You still have a lot of pain. I hope you've found a little relief in sharing you and your dad's story. 12 years is a long time to hold all this in. Take care Liz xx

Hi Missy Welcome to the site. You've had your SAH exactly one year after me! I had my SAH 14/2/09, I collapsed outside the restaraunt we were going to, to celebrate my 49th birthday! You are doing amazing. This time last year it was taking me all day just to shower etc and I was still sleeping most of the day. I couldn't go near the computer for months. It's still very soon after your SAH. The fatigue is your body's way of telling you to rest. Make sure you are still drinking lots of fluid (I was told 3 litres per day) as it can take up to 3 months for the blood to be dispersed. Looking forward to hearing more from you when you are able. Take care. Liz xx

Hi Miss Griff You've done the right thing coming here and starting to talk about it. I agree with the others, counselling should help. I have 3 children and had my SAH 14.2 09. My daughter was 22, my eldest son 20 and youngest son 17. He was really affected by it. Before my SAH I was a strong confident person that nothing would phase. Everyone relied on me and came to me for help. I loved social occasions and would work the room. I have lost all my strength, don't do confrontation (as sometimes my brain has no words) and get exhausted in social occasions. I am having counselling and it's helping so much. I'm understanding that a lot of how I am is to do with the trauma (post traumatic stress disorder) and not necessarily down the physical effects of the SAH. It's a slow process but worth it. My youngest son has now asked for counselling. He can get access to this through his work, he's a civil servant. But you can access this through your GP. Go and speak to him/her and tell your GP how you are feeling. I have been given a book called Manage Your Mind written by Gillian Butler and Tony Hope. It's not book you read from start to finish but that you "dip into". This has made me realised that I am "normal" in my feelings and how to find strategies to move forward. What a lovely caring daughter you are, I'm sure you will have a fab day tomorrow. Take care. Liz d

Hi Saffy I hope you have some relief from making the decision, wel done, and it's not too long away. I think you're right in speaking to your GP and hopefully you will get some help in easing your anxiety at night. I have 9 coils in my verterbal artery and aneuyrsm. The artery is completely coiled off. I used to get pressure at the base of my skull and I thought it was the coils but I was told that it was the healing process. That pressure lasted for about 4 or 5 months. What I was told was that the coils would find somewhere to settle and they have but I am not aware of them at all. I recovered very quickly from the procedure, it was the recovery from the bleed that took longer. I was "clinically well" after 5 days post procedure and was discharged home, althought my hospital stay was 12 days in total. Take care. Liz xx

Hi Karen Good luck Karen for the 8th and hope all is well. Liz xx

Hi Saffy All the best for tomorrow and good luck coming to a decision. Liz xx

Hi Kel We have an occy health department in our NHS trust and it's policy to refer to them. My daughter's work (even though it's also NHS) use an outside Occy health agency. But again there is a policy of referral. My boss at the time of my SAH called me a few weeks after I came home from hospital. She said she wanted to referr me to OH so that I would get all the support and help that I needed. She also said that even though I had only been in the office a short time (6 weeks) I had become "an integral part of the team"! Unfortunately she's now retired! Kel my job called for a lot of data input and again accuracy was very important. But I could do it. I was slow at first and got headaches. I would nip to the loo, put the light out and sit in darkness for about 5 minutes. This calmed my brain down and let me continue. It took huge concentration but it got easier week by week. I made 3 mistakes in the two months!!! I still maintain that I'm not any less intelligent but my brain is slower and I have to concentrate harder. The odd time I did do work automatically I would get a bit panicky because I couldn't remember what I'd done! But there are regulations covering how long you sit at a computer and you should have regular breaks away from it. At first I would stop after an hour and go and do some filing. Liz xx Liz

Hi Saffy I'm so sorry you've found yourself with this dilema and the anxiety must be just awful. I agree with Karen, I would do what is needed to avoid having to go through another SAH and the recovery. You do need support however. Maybe show your husband and daughter this site. Have them read through some of our stories and posts, especially members that have gone through what you're going through. Good idea to write down your questions and get your husband and daughter to do the same with their questions/worries. Take care. Liz xx

Hi Kel This is a pargraph from my latest occy health report. "As previously indicated the impact of her cerebral haemorrhage is likely to be considered as a disability under the Disability Discrimination Act 1995. There is a requirment to consider reasonable adjustment. Under the remit of this Act individuals regarded as having a disability should also not feel discriminated against or treated less favourably than other colleagues". I am a member of Unison but I think the union Unite might be the one for you. They'll have a website. Maybe have look for a number and give them a call. Even if your work doesn't recognise unions, the union should be able to give you advice. Looks to me like you maybe getting less favourable treatment to another colleague! My experience of our HR is that they are supporting my manager. My daughter works in NHS HR and was surprised at the lack of information given to me by my HR department. She also said that companies will do things they are not supposed to because they rely on the person not knowing their full rights. Good luck and take care. Liz xx