Gill C

Panda eyes is what hubby says to me when I'm absolutely out of spoons. Yesterday was such a day & I ended up in bed at 7.40pm & slept!! I don't do anything for them as I wear glasses so they can't normally be seen unless I take my glasses off!! I am asking hubby for some lift & luminate cream from Boots which is supposed to be good for over 45 year old skin. Will let you know if it works but I suspect its more to do with tiredness. I do take a multi Vit & iron every day & although it helps with the woolly headed feel (I think but I have taken the muti vit since my op & don't want to stop it to see if the woolly headed feeling comes back!) I do find the skin on my cheeks is dryer now so that includes under my eyes, maybe I need to up the water intake again?

this is free on kindle at the moment, haven't read it but might be worth downloading if you have a Kindle x http://www.amazon.co.uk/Me-Again-ebook/dp/B0095B6EJ6/ref=sr_1_1?ie=UTF8&qid=1352565013&sr=8-1

I agree whole heartedly with what has been said so far, another alternative is the Brain & spine foundation helpline, again staffed by nurse specialists, I have also emialed them when needing some advice. I used to get creeping, tickling feelings on my head as part of my skull healing, lots of itchiness under the skull around my scar area (I was clipped). Its is hard to trust what the medics say but I can honestly say I have been on BTG for over 2 years & have never known anyone have a second rupture. I used to pray every night to wake up the next day but it does ease off & you do begin to trust what you are told. I would def ask your gp for help & maybe some counselling or CBT, as I'm sure you know the more you stress/panic the worse you will feel. Hugs (())

The company who are doing the work related activity sessions, in my case they are called CDG (Maximus). I used to have to go into town every month & park which cost me around £3-4 & although they gave me expenses for petrol it didn't cover the car park as that was pay on exit!

Sally sad to say this confirms what I thought, you will only get your NI payments made but you will still have to take part on WRAG ativities. Fortunately for me the Co here are aware of the problems this causes & are doing telephone appointments where necessary. The whole system is just wrong, how can they decide you need support to return to work but limit the financial help to 12 months? Its just totally beyond me

Hi Andy & welcome to BTG On the vasospasm front I didn't have a bleed but I did have vasospasms on 3 different occasions, during the op, directly afterwards & my blood flow peaked about 10 days after the op. It was a scary time for my hubby more than me I guess as I don't remember being pretty poorly. I looked like I'd had a stroke with left sided weakness & slurring my words. I think I was taking nimopodene at that time but they also had me on a gelafusin drip which is a steroid which dilates the blood vessels & improves blood flow to the brain. I have some remaining left sided weakness but it is minimal, my vision problem is down to the pressure of my anni on nerves at the back of my eye & not to vasospasms. I think it reallyis a case of having faith in the experts, just because Donna is in the danger period does not mean she will have vasospasms. I would however say that rest is critical & maybe the nurses could help with ejecting visitors once she tires. At wessex they would have a quiet period in the afternoon when the blinds were drawn & the lights went off, I ignored it once cos I had suprise visitors & the peak of my blood flow was 2 days later!! I was told that smoking is the biggest influence on strokes & anni's, drinking certainly doesn't help. I think you both really need to face that fact & make some changes. The anni would def have been there as a weakness in a blood vessel since birth, its the raised bp that makes it more likely for it to burst. Take care & send Donna our best wishes & tell her to drink lots & take things slow xxx

I go through phases, at the moment its a waking early & not going back to sleep one. I don't usually struggle to get to sleep but then I have tablets to help me sleep. I don't nap during the day any more but if I'm allowed to sleep in its usually a 9am ish lie in (assuming I do go back to sleep) Occasionally I will have a headache in the night which wakes me up, its usually becauase I'm too warm in bed (according to my bloods its nothing to do with my age) but I do have a problem with regulating temp still.

Daff I found hot tubs fine but I can't manage the sauna, my scalp felt tight & horrible so I only lasted a few minutes in there. I don't think there is any reason you can't try it & see how you get on. I was told I could do anything that made me more relaxed so unless you have an underlying problem such as high bp I would say its ok. I would still recommend that you check with your GP or neuro nurse to be sure

Hi Juliette, I would say the answer for me is a most definite yes. I had only one cold in my first year & that was horrible, we were on holiday & we had to come home I felt so rough. This past year I've had 3 colds, one every 2 months usually coninciding with our wessesx meet. I also had flu/tonsilitis over New Year & was in bed for almost a week. It seems to go straight to my head & then I feel achy & ill. Mind you I get flu like symptoms when I'm over tired!!

Hi Sally don't feel guilty, I mentioned mentoring or buddying to our SAH nurse specialist but nothing has come from it. I guess I should have pressed for it as I do think its a valuable system but it might be pretty difficult to implement as we're not medically trained. I do know that our nurse specialist does give new sah'ers contact info for others further down the line but I think that is mainly for people who are in constant contact with them. The lady at Ians work who was coiled at Wessex I really wanted to help, I asked hubby to pass on my moby No but he was embarrassed cos he doesn't know her that well. I think just being here on BTG helps so many of us & reaches all four corners of the world not just one hospital. You've helped all of us on here so don't feel guilty, life gets in the way xxx

Sally I think you are right to be wary, I was told if you are on WRAG & have had more than a year of ESA it will stop immediately. There is a chance however that you will have your NI paid by the government which will help with your pension. My ESA stopped in May/June & I was called for a medical recently. I did leave it a long while to appeal but I wrote to them & asked to appeal, they wrote back & said why had I left it so long. I wrote again & told them of the issues regarding concentration & forgetting the date I had to reply by. I fully expected to have to go to tribunal but oddly they wrote to me just about 2 weeks after getting my letter saying they would pay my NI for me, no mention of the appeal so I can only assume that I was given it on the basis of my letter. Having done a tribunal I was gob smacked that they overturned the decision on the basis of the letter which leads me to think that perhaps that Dr has done something or not done something according to the rules! On my tribunal I had letters from thhe neuro physch & my gp but was still asked to attend the appeal!! Their own rules seem to be inconsistent (something I said in my letter when I was given nothing for vision -apparently even with my right eye covered I have perfect sight!!) If I hear any more about an appeal I will update of course xxx

The only person I know who has had one is Sally. I think this was more to do with her vision than the SAH itself as I'm sure she had a few eye tests before that. I'm sure she will pop on & tell you about straight from the horses mouth!

Patsy so sorry this has set you back & understand your frustration completely. Your situation was exactly the same as mine except my registrar said it was up to the DVLA to decide in her initial letter. It took some explaining that she needed to tell my GP there was no risk of blackouts or fits & therefore in her opinion I could drive. My GP was loathe to say I was fit to drive as she also had no experience of SAH so relied on the registrars opinion. In the end the eye clinic had to write to the registrar to say my eyesight was fine to drive, the registrar then wrote to my GP to say I was not at risk of anything going wrong after the surgery & then my GP was happy to confirm all that to the DVLA!! I did ring my nurse specialist in tears one day to try & move things along which did help.

Lisa I used to get migraines before my anni, mostly with headache but they got gradually better as I got older. The worst I had was 4 migraine auras one after the other when the anni was pressing on my optic nerves. Since having my anni clipped I haven't had a single migraine of any kind. I do think mine are hormone & stress related as they started with puberty. When we had the last Wessex support group we had a neuro surgeon to answer questions for us & this was something I asked & although several people said they had migraines pre sah & not after he concluded that there is no link between the two. I still reckon there is a link in mine as they were always aura starting in the right eye & left sided pins & needles, it seems too much of a concidence to me that I had 4 one after the other when my anni was pressing on arteries & nerves on the same side. All I can really say is that medically there is no link proven according to him.

I don't often get headaches that I would associate with my clipping. I get sinus headaches which are pressure around the eyes & nose. The few headaches I have are pressure like on the top of my head around the scar area, sometimes a spot on my skull will feel tender but it doesn't last long. Most of mine will ease with paracetamol or ibuprofen although I don't reach for the pills as readily as I used to. If I've really overdone it my head will feel heavy & sluggish & I might feel dizzy

I have been incredibly lucky to find Headway in my early days, I was struggling & didn't really know I was. I felt I could get better on my own but that didn't work - I needed help. headway although a general brain injury charity threw me a lifeline & i gained so much just from understanding that I felt this way for a reason. I learnt why I felt like I did & that I wasn't alone. Sharing & talking to other brain injury suffers should not be underestimated, feeling alone in our problems can be damaging to our recovery. Kris is there no form of support group anywhere near you? I agree thank God for BTG, before I found Headway I was here & it was such a blessing to feel I wasn't alone & that I should be feeling that way because I was still healing.

Carl it really is a hard one!! I worked part time before my sah & it suited me to be home with Nath & not working all the hours God sends but it did stress me out more than it should have. I want to work again but I think this time I need to give something back. I want to work for my own sense of self & to have a little spending money. I want to carry on with my card making & maybe set up a crafting circle to meet some like minded people. Ideally I would want more energy & less fatigue, that has had the greatest impact on my life & changed it in more ways than I would have thought possible. Its far better now than it was a year ago but its nowhere near where it used to be. I'm very fortunate that I don't suffer badly with headaches & although I have been left with permanent damage to the nerves in my right eye I am so grateful to be as well as I am. Happiness is such an ephemeral thing but I would like to be happy , I'm mostly there but working again would be my aim at the moment

Nic I let my ins co's know when I had the all clear & they said as long as the DVLA were happy they were happy too. The problem for me was that until that decision was made I couldn't hand on heart say the DVLA were happy, they were still looking at my case so hubby certainly wasn't happy f.or me to drive & although I hated him for saying it I didn't disagree with him. Also in my case my registrar passed the buck to the DVLA & eye clinic & it was only when I got the eye clinic speaking to the registrar & my GP they all agreed I was ok to drive. The DVLA didn't write to the neuro as far as I'm aware, it was my GP's decision & hers alone that made the DVLA agree to my return to driving

Nic the exact same thing happened to me, I was told I could carry on driving until they decided otherwise. I was stunned that they said this & as I'd already sent my licence to them voluntarily I decided not to drive until I was given the all clear. You should be aware that you have to let your insurance Co know that you've had an sah, although they don't keep the info on file you are obliged to tell them. Because of this confusion & no clear cut decision from the DVLA for 4 months I just didn't drive. Once I got the all clear I rang both mine & hubbys insurance co's & told them & all they said was if the DVLA were happy then they were too!! Before I got back in the car on my own I had 2 driving lessons with a friend who is an instructor so I had a professional view of my skills. As I only have one eye for driving (my right lens is fogged to prevent double vision) I was worried about missing something. Its really up to you, if they have said you can continue to drive then you can.Personally I would have preferred that in writing but for my own peace of mind I waited for the all clear before driving again. Good luck & keep ringing them (I rang every week) to check on progress xxx

I have lots of dreams about needing the loo but fortuantely so far I wake up in time to go to the loo. Have you tried doing pelvic floor excercises to see if they help?

Lynnes anology of resting a broken leg always seems great to me, you rest for 6 weeks to allow it to heal but a brain is never resting even when you are asleep, therefore how much longer it takes for it to heal. I always refer to info overload as saturation point where you add more & more salt to water until it can hold no more & you see salt laying on the bottom. To me this shows how you can absorb some info but then the brain just shuts down & you can hold no more? I feel for you Michelle & I absolutely would do everything in my power to make it better but to do that without people obviously 'making allowances' for Dylan is a real struggle. Take care both of you & give him a big hug from me xxx

That is interesting Patsy, wish I'd known that 2 years ago!! I surrendered my licence when I notified the DVLA of my clipping, one reason I chose to be clipped was that I was told coiling means no driving for a year. I sent my licence off in July & I had to get the registrar to write to my GP to tell her i was fit to drive which was no easy task! As I still suffer from double vision I have to have my right lens fogged but the left eye meets the requirement for driving so the eye cons had to write to the registrar to say my eye was ok, then the registrar had to write to my gp to say that clipping wise I was oko to drive too. In the end they wanted my GP to write to say I was ok to drive & weren't interested in what the consultant had to say. I did ring them & was told I could drive until they decided otherwise (this was probably cos I didn;t have a rupture) which seemed totally backwards to me! I still didn;t drive until they gave me the all clear which was in Oct. I then had 2 driving lessons with a friend who is an instructor for my own peace of mind. I felt I could drive but I wanted to make sure I wasn't dangerous without realising it.

Hi Nic I was clipped over 2 years ago & as I remember I never had any problems sleeping on the affected side, mind you I think I slept mostly on my back in the hospital as the bed was so uncomfy!! I was also given amytriptaline every night so that probably helped. If you have any irritation or soreness it would be wise to be checked over just in cast there is an underlying cause. Hope that helps. xxx

Mary I was a mess on my 1st anniversary too. I think its because its the first big milestone we reach & we expect to be so much better cos no one told us it would take more than a year!! I was told 6 months for recovery & after my clipping my Neuro said there was no reason we couldnt fly to Turkey 2 weeks later!! I very unrealistically thought I would be ok to fly because he said it was ok, I couldn't even walk upstairs or have a shower without shaking with fatigue afterwards never mind climb the many steps to the apartment we were in!! I think when a neuro tells us 6 months or that we should be normal we believe them cos after all they are the experts & have seen this many times before. But hell no we are the experts in what recovery is like, most of them dont see us again or have any idea what life is like post sah so I think they should be careful in what they say. I can say from my point of view the headaches are generally better 2 years on but my fatigue is still pretty high. I know now this is due to suffering vasospasms during & on 3 occasions after the op but I didn't have a bleed so its not really right to compare. Hugs to you Mary, you are wonderfully strong woman & things will get easier I'm sure, sooner rather than later for all of us xxx

A month or so ago at the Wessex support group we had the wonderful chance to question a nuero cons & we did grill him about why things happened & what links there were to genetics & stress etc. I had suffered from migraines since puberty & when my anni inflated I had 4 migraines on the same day one after the other. The anni was on my right posterier communicating artery & I think a weakness there caused my migraines cos the ones I had after my anni inflated were exactly the same in aura & pins & needles. I asked the question but was told there is no link, several people also reported that they had had migraines before but not after. Strangely I have not had a single migraine since being clipped. We also asked about high blood pressure & stress, high bp is a factor but not everyone is stressed at the time. On saying that I don't think the links are fully explored. The highest risk factor that is researched is smoking & he was most adamant that if you smoke the risks are far higher. Like the other ladies say then internet is a great tool but sometimes it can make us worry more. I googled lots after leaving hospital & frightened myself too much so now I don;t google sah at all. It does come a time when you have o accept the chances of it happening again are so slim its not worth wasting your life living in fear. I think for me it was a good 6 months before I stopped praying to wake up the next day. Time really is a great healer so take things at your own pace & you will come to accept that this was a one off incident & not going to happen again any time soon take care hon xxx