JayKay

Gosh I don't quite believe it! As some of you may know, the Stroke Assoc recommended I get my MP involved in my ESA appeal. Well, he's been keeping me posted on all the feedback he gets and today I received a copy of a letter to the MP from Atos. This is what it says: (Background history is that I had the SAH and brain surgery in Feb whilst temping so therefore had no income. I was given ESA but then attended medical and got zero points despite cognitive issues and crippling post-stroke fatigue. We also queried whether the decision to send me for a medical was taken by an admin person or medical practitioner). Here is the text of the letter with interesting bits in bold! "Jobcentre Plus in xxx forwarded a copy of your letter to them on 8 Oct 2010 together with correspondence from Ms Jaykay. On receipt I immediately commenced an investigation into the concerns raised relating to Ms Jaykay's medical assessment for ESA held at xxx on 22 June 2010. In respect of the guidelines, I can confirm that consideration is given to each referral from Jobcentre Plus, to decide whether a medical assessment is required in accordance with ESA legislation. The decision to ask Ms Jaykay to attend for an assessment was made by a healthcare professional, as only those people with the most severe physical or mental restrictions are placed into the support group and do not have an assessment for ESA. However, as a result of our investigation I have advised Jobcentre Plus that the medical report provided on 22 June has not been completed appropriately. It should have contained a record of cognitive testing and also taken more account of the fatigue experienced by Ms Jaykay. Jobcentre Plus decide entitlement to benefit based on all available evidence and they will now consider how our investigation impacts on the benefit claim and whether a further medical assessment is required. If Ms Jaykay wishes to discuss the claim with them she can call 0845.... Our Medical Manager will provide additional training to the examining doctor to ensure all future work is in accordance with professional standards. I sincerely apologise on behalf of Atos Healthcare for the deficiencies identified within this medical report and for upset caused to Ms Jaykay by the delay in starting the assessment. (this relates to the TWO HOUR wait I had to endure at the medical!!) Yours sincerely...." So, good news but as my partner says, it's disgusting that we have had to go to these lengths. The squeaky wheel gets the oil: I'm lucky I have had support to do this as in my current state I would have just given up at the first hurdle. Oh but that would have just "proved that I was faking it", as the media say....

I saw that this morning! Confusing message though. But good to know that these tests were done with large doses of Vitamin E, so I expect if anyone is just taking a multivitamin the dose will be much lower. What I did think, when I read this, was that at least it talked about how serious haemorrhagic strokes are. Maybe it will filter through to a few people?!

Great - hope it helps! I have been told more about relaxation techniques by the Fatigue Management woman, and I realise now that even though I know about them, I don't apply them like I should! We live and learn, eh?! Hope you fall off to sleep easier now (ooh and I forgot to say but a warm bath about an hour before you go to bed should trigger sleepiness too)

Poor you! I have had that occasionally, and just put it down to anxiety. Maybe you could try some relaxation techniques? I found a good video that illustrates the kind of thing I've been taught over the year. Check it out here. And BREATHE!!!!

Welcome to the BTG family, Chrystal! Wow, you're poor mom has been through it but I can tell from your story that she's a strong woman. She's done a great job raising such a strong, thoughtful young woman like yourself. I'm so glad she's proving the doctors wrong. You take care now, and don't forget you can ask us anything - there's always someone here who's been through it!

Hi there! This sounds familiar as the Brain and Spine Foundation booklet mentions that SAH survivors can get that feeling of water trickling.... I don't get that, but at nearly 9 months post-op I still have a half-numb head (I had a craniotomy), soreness around the scar and a dreadful clicking noise in my skull - which stops when I gently press the bone flap! It's annoying but I don't worry about it because it was all explained in the booklet. You can find it on their website if you didn't get given it by the hospital. It's very useful to the survivor and their family too. Take care!

Hi there. Sorry to hear of your problems I too had an ACOM artery clipped, and at first I did have balance problems and a lot of dizziness. I definitely couldn't put my head down at all, and when the physio asked me to pick something off the floor I could do it as long as I held my head up, if you know what I mean! Luckily though, I'm a lot better. I only lose balance rarely now. I hope you get better soon!

Lin lin always puts it so brilliantly!! I agree, staying at home you think "oh I'm much better now" and then as soon as you do anything you realise you're anything but. I had this conversation with my partner YET AGAIN yesterday: I do a bit of work for the Consultant I used to work for, I take her phone calls on a mobile, write down messages and liaise with her; and sometimes I pull the notes for her clinics and do some filing. Well, yesterday I did this for her and did about two hours. Got home EXHAUSTED and it's only a 3 minute walk from my house.... I can't seem to break that two hour barrier and my partner just can't understand why I want to, but I WANT to get back to work. I hate having to count every penny being on ESA, not that I was loaded before anyway! Anyway, when I originally filled in the ESA form I got help with a lady from Age UK as I was a volunteer there. I also had discovered I could have a home visit from a CAB worker to do it. It took us 2 1/2 hours and I was shattered at the end of it. I did get my ESA but then got found fit for work at the medical (don't even get me started on that!) and am now in receipt of the lower amount pending the appeal. Don't give up!!

I'm with Paul on this one. I'm so pleased you know he's still the man you fell in love with, but the fact is he is also different now. You must NOT let the hospital browbeat you into having Rich home before everything is in place to help you. There must be a full care package sorted out before he leaves hospital. It's one thing to say what's best for Rich, but what is best for the rest of the family? Have you been put in touch with the social worker? Ours was lovely (at the hospital) and I didn't have half the issues that Rich has now. I'm also so glad you got the grant - I was going to suggest going down that route. You take care now, and if I can ever be of help, you can PM me for a moan, ok? xxx

Well done for raising awareness! It's my number one goal since the SAH Great picture too - don't know what you were worried about lol

Hello and welcome! I look forward to checking out the blog. I know my own blog has been and is still very therapeutic. I kind of feel like this happened to someone else, but I look back to my entries in February/March and think, wow, I've come a long way!

My first thought after having my SAH, while I was still in hospital, was "I must raise awareness". When it happened, I convinced myself at first I had twisted my neck somehow, as I was running through the stroke signs in my head and thought it can't be a stroke, I can speak, raise my arms, my face hasn't drooped. And yet I KNEW without a doubt that something had "gone" inside my head. I even pointed to the exact spot. The paramedics did shine lights in my eyes and check for limb weakness, and as I was conscious and not talking rubbish they asked if I "wanted to sleep it off". I said "I don't want to go, but you are going to have to take me to hospital". Thankfully the junior dr said she would do a CT and if it showed nothing I'd have to have a lumbar puncture. I'm just glad (IYKWIM) that there was a lot of blood on the CT!! My GP tells me that a GP might only see one SAH in his/her lifetime.... A&E doctors however should be more aware. Well, that's what I think anyway!

I admit if I'd been coiled and the consultant said I didn't need MRIs I'd be worried too! I hope your GP can get some sense out of the consultant, like you say! Good luck. As for returning to work, wow! Well done you I'm glad you get a day's rest each time though. I know that 8 months on I still get exhausted at the slightest thing. And I mean "exhausted", like an SAH survivor exhausted! Do you get that I'm so exhausted it hurts feeling? I hate that!! Good on you and keep smiling

Yep, hot lemon and honey, and paracetamol The "ACE-inhibitor cough" is so annoying - my ex husband used to get it! You should be able to talk to the doctor and see if you can try an alternative. Otherwise, listen to Karen's wise words. It's always best to get a medical professional to give you advice. As for not being able to take certain meds after the SAH, it is really bugging me too: I'm not allowed to take my Celebrex because it can raise BP, but it was the only thing keeping my inflammatory arthritis under control. I am hoping the Rheumatologist will have something else to offer me next month.... Hope you feel better soon!!

No one in my immediate family (thank goodness, touch wood!!) has had a SAH but my grandmother did die of what we called "brain haemorrhage" back then. I don't actually know if it was a clot or a bleed... She was 76. The doctors told me that my daughter doesn't need screening unless 2 other close members of the family have SAH, so we're just living life to the fullest, thankful that I came out of it ok. I would hate to have her screened and then told there's an aneurysm they want to "watch and wait"! I'd rather not know !!

Yep, I was clipped and told that I don't have any other aneurysms and that I don't need follow-up imaging. That I'm safer than the percentage of the population walking around with aneurysms that don't know it! I trust my surgeon implicitly - she saved my life and she's been doing this for a long time, so if she says I don't need scans then I have to trust her.

That's great news Ash. I know how awful it is to be so far away from the rehab place though: my mum lives in France and her rehab was in Normandy... miles away from any of the family, even those who live in France However, it was fab, so I hope your mum comes on in leaps and bounds. Hugs!

Oh that sounds good!! Thank you

Oh I totally understand what you mean! But I'm not shy about telling people that I've had an SAH to explain why. I keep meaning to join Headway where you get a card that you can thrust at people when in need, that says that you've had a head trauma. I think it might be easier? I don't know.... Anyway, don't worry too much. And I bet if you tell people they'll go "oh it happens to me all the time", which is annoying because we all know that having an SAH is different, but if it helps people understand in their own way, then that's got to be helpful, right?

I would go to the GP too. Having said that, they do tend to put everything down to anxiety nowadays! Just from my knowledge of what doctors look for (as a medical secretary) and not saying I know for sure, it does sound to me if he has this repeatedly it would seem to be more due to anxiety. If you think about it, if he was having a bleed, he'd be very sick. I hope that is reassuring? Take care!

What Keith said. You cannot be discriminated against because of your disability, and it IS a disability having had an SAH (although I'm no specialist, I'm just saying!!). This is what worries me about working: living on benefits is no joke but the doctors say I'm not ready to go back to work and I know I'd crash and burn very quickly Good luck!!

Hi there and welcome to BTG! It's lovely to have another perspective. I don't remember much about HDU at all, but I was apparently extremely chatty LOL. I know it meant a lot to me to find out which junior doctor had been in charge of my emergency admission because she is the one who sent me for a CT scan and thank goodness! My daughter and I went to see her with chocolates and it was lovely to be able to say "look at me, I'm fine thanks to you". As a medical secretary in a hospital I'm only too aware that most people complain about their care so it was lovely to say thank you.

Hello and welcome! Yes, very early days for you. I used to hate people saying that!! Now, nearly 8 months after my SAH I can tell I am a lot better than I was at 3 months, even if day-to-day it's not noticeable. Get plenty of rest, take it easy, and see you around

Did you see this article in the DM today? I commented because I was so incensed by one woman who said it was "hardly a medical miracle"....

Hello Stace and wecome to the best forum in the world! I am so sorry for your loss; it must be really heartbreaking but I hope you'll find some solace here. Those of us who've come through SAH never take for granted that we are the lucky ones. Take care sweetheart x