Bev897056

Hi guys I was just wondering if any of you now suffer long term side effects following sah? I am nearly 9 months after bleed and my main issues are vertigo, fuzzy Headed, feeling as if I am dreaming at times (although this could be a form of sceizure) actually having sceizures and a dislike of being in crowds, shopping centres with bright lights and mainly just not me anymore......oh also shattered all the time no matter how much sleep I get. I presume this will all be with me for a long time as the bleed has killed off cells surrounding it so how can I ever be the same! Just wondered if anyone else has there long term effects xxx

Hi debbie I thought I would drop u a note as I too am under lgii and noticed your comments about the odd care and lack of info you recieved.....i am under dr phillips there and in july had my last mri and found out today that they recommended a repeat angigram (coz they cant yet find the cause for my bleed) and to date the radiologist consultant knows nothing of this. I am getting a bit stalled with their so called care. It takes the consultants sec weeks to type up notes following an appointment with dr phillips, which in turn stalls any further action that they may need to take....and she is also damm right rude saying they are short staffed and me being on the phone to her is taking up more time.am begining a comaints procedure on them......just wondered if you found them odd too? I recently had a sceizure too but myn was a big one,....thankfully I was taken to pinderfids and saw a neurologist there and he was the niceest person I have ever met ....spent an hr going through everything and pescribed me anticonvulsant medication....lgi just seem to shoo you off and dont seem to have the time at all! Like u, I have also questioned why at only 30 can this happen to me I too thought I was untouchable, but this really makes you re assess everything....i recently quit my job in a mad ooffice staring at computors for 8 hrs a day to working in a care home, and I have 100 percent more emphacy now and love it, I also spend tons more time with my family and 2 yr old instead of rushing through life palming him off at nurseries, coz u just dont know whats round the corner...... Anyway, you babble on all u like, sometimes its just nice to vent and someone on here is always willing to listern....i also become good friends with jus who is also under lgi.....she is a star and if it wasnt for this site I would have never met her. Take care Bev Xx

Hi kris I had the bleed and saw countless dr at my gp surgery who fobbed me off saying I had a migraine or stress etc iand it wasnt diagnosed until 3 week later by ct scan after I had seen 8 different dr cos I knew something was not right then they sent me to leeds hospital to have further tests a ct with contrast then an angigram so it will have been about 3.5 week I had angigram after initial bleed. They then followed this back up by an mri then few month later another mri with contrast then last week I had another ct scan after the fit I had. Now at my appointment monday he said they may do another angigram 9 month later. I just wonder and surly thought if there was anything to be seen it would have shown up on one of the tests unless angigram is the clearest one. I just dont know any more still feel rubbish everyday a lot I think from the stress of the whole thing x

Hi Just wondered if anyone who has had bleed with no cause had a follow up angio nearly 9 month after the event. And if so was anuything detected? My neuro said they will do one as my initial bleed and blood clot could have been pushing on some abnormality that prevented blood flow to show it up! So who knows what they will find.....has anyone had any experience of this? Thanks Bev X

Well saw neuro surgeon today and they r sending me for another angiogram as he said that the blood clot could have been pressing on something not allowimg the dye to flow through an abnormality so they want to double check now ithe blood clot has nearly broken away....i thought it would have totally cleared by now but he says it takes a while and thats what causes me to feel odd and dizzy......anyone else heard of this? Also he said its a good thing they havent found anything yet and maybe it could have been something that blew itself up.....but if they do angio and find some little critter they can bolast itn away with gamma knife surgery. I still question everything though coz I just never ever feel right. Its been 8 month now.....just wonder how long it will take to fully recover....any ideas?

Thanks for. Your reply vanessa. I just got all my notes out and they have put non traumatic. Spontenious intercrianal hemeridge. So I have not got a clue what the difference between the two are blood was adjacent to syvilian fissure! I feel as if in have just been left to get on living in fear: X

Hi everyone So after my seizure i feel like im bk to square 1! I was having CBT theory and this has been put on hold until i find out some reasons WHY i have had this bleed and now seizures to follow!!!! BUT as we have all said, will I ever find out where the blood has come from???? its a complete waiting game!!I am obsessed that there is a cause that hasn't been found yet - like a micro AVM or micro ani or micro tumor....:confused: To date I have now had: 2 MRI'S -1 with dye 1 Angigram 3 CT scans - 1 with dye Surley something would have showed up??????? I know all of us with a bleed with no cause are all in the same boat but its driving me crazy not having the answers and now to top it off i have the seizure!!??!!??!!??!!?? Please can you tell me what tests you had & are you now satisfied that the dr's have done enough??? Thanks Bev xx:frown:

Hi Everyone Hope your all ok! So I have had a set back! Early hrs Fri Morning, I had a grand mal seizure!!I only remember the paramedics coming into my bedroom as Andy had phoned 999 expecting the worst! I felt heavy, was confused, could taste metal in my mouth and just thought here we go again! Anyway dr's checked me over and did another CT scan and thank the lord there were no major changes - no new bleed or tumor etc- so they let me out yesterday at around mid day! They gave me a few possible reasons why it happened-scar tissue from the bleed, stress and anxiety and drinking alcohol, which i must admit i have been doing quite a bit of to chill me out - which isnt the answer, so no more drink for me!! So im back to square 1 with worrying if i will have another bleed and if i will have more fits, and I have been advised that I cant drive for 6 months! I am back on the sick (but to be honest, i never felt right going back to work) and just worry what the future holds! They have not put me on medication for the seizures, just been referred to a fit clinic where a see a neurologist - not a neuro surgeon! Has anyone else had any experiences of theses seizures -its been nearly 7 month since my bleed xx

Hi guys As much as I try and forget I cant I keep remembering lying in that hospital bed tears rolling down my face the humming of the mri the stress of the angigram the constant blood pressure check ups andight shining in my eyes. Though the night the look on my families face not knowing whats next the fear I felt thinking this is it im not well ill not seemy son grow up.......i cant shake it aas much as I try I should be moving on but my symptoms persist dizzy feelings of life being unreal tingling in hands ....just when I think im ok another day of hell follows.....im sorry for moaning but. I hope someone will underdtanxxxxx

Hi everyone I agree with what your saying, but I have returned to work now part time as I was before as I have a little one, and slowley I feel as though I am putting the sah to the bk of my mind! I am keeping myself busy so sometimes I don't have the time to think & I'm even thinking of going to Ibiza with my partner and son at the end of the month for a long awaited break- consultant said I could fly and I believe life is far far too short to dwell!! Easier said than done i know this but it really is! There is never a day I feel 100%but I'm still alive and am able to spend precious time with the ones i love so dearly so I'm counting my blessings, also I find coming on here helps knowing I'm not alone, and I even chat to jus from here who only lives half hour away so I know I'm not on my own and how ever bad I feel someone is right there with me! I still cry now and then, in fact I had a cry today and asked my son for a big cuddle which made it all better, and I think we are all allowed to do that but then I think of what is ahead of me, although I am scared, my motto now is life is too ****** short!!!We have to remember what's important, living here and now!! I have had a massive re think since I first came on here, and I can tell you I'm a better person for what's happened to me, better and calmer! Love and hugs to you all-remember your not alone. Xxxxx

Hi everyone Was wondering if anyone can help? I had a SAH in March with no known cause, and went to see a private consultant for a 2nd opinion and have just received the summery, and on it it says that a incidental type I Chiari malformation was noted!!!!! Just wondering if anyone else has this and what the hell it means? Right now I am VERY VERY scared! Love Bev x

Hi Jack Welcome! My son is called Jack, good solid name - Read my posts, i am constantly searching for the why's, when's,if's but's & i had myn in March! Everyone is so nice on here,its actually surprising how many people the NASAH happen to! I thought i was the only one, its such a comfort that im not. Take care and ask away, there is always someone willing to help Bev xx

Morning Sorry to hear about your mum. You will find lots of lovely people on here offering lots of helpful advice!! I can only think that this may be due to anxiety or panic?? I had a SAH in March,and have worried ever since, in fact i feel light headed now, the dizziness could be due to the bleed and the racing HB could be panic-does she panic and im sure she must be anxious after what she has been the If you are worried, tell her to go the dr, they may give her some beta blockers or be able to check her over. Take care Bev xx

Thanks for your replies! I suppose its one of those things then, but never stops u wondering why! I swear myn was due to stress, always been stressy & then had a little boy which is quite stressful, as well as working and moving house,but then people say, well I have a child and work full time and my brain hasn't bled, so I don't know! & i did drink quite a bit,not like an alcoholic, but maybe all this contributed!? Im glad that the stats r low for another bleed. The consultans G.P was convinced that they would find something once the blood had absorbed like an AVM or a small tumour or a cavonoma,because he said im so young (30)-but they dont appear to have,and i notice that most of you are still young...!Im still waiting for my consultation for him to defs say that im all clear as he was waiting for the report to go with the MRI!-so im waiting till Oct. I do wanner try Meditation, something that i have never thought about,but maybe this will chill me out! There has never been any support from the hospital, they just sent me home and said take it easy and inform the DVLA and thats it, so i have been left wondering from day 1! I am starting CBT Counselling in a month - there is a mega waiting list so they dont exactly give u it when needed, but for now, im just trying to get on with it all! xxx

Hi everyone So I think some of u know my story but I can't seen to get my head around why my bleed has happened, with no apparent cause, will it happen again? Why have I been left with so many neuro symptoms if the blood has nearly absorbed???? Why why why??? I wake up every day asking the same things? I think If I knew The cause I may be able to settle more, or maybe not, coz there would still be the fear of if it would happen again, but will this constant questioning last forever??? Is it just me that feels this way? Also do u guys still enjoy a drink or 2??? I love my water like but also enjoy a glass of wine or 2 on an evening which I always did before this stupid head thing!!!! Love 2 u all Xxxx

Ji Jus - thought I would put my penny's worth in (I think thats the saying) Honest, when you go back, you will get the comments like 'oh so you have a clean bill of health now have u' i keep getting my workmate saying 'yes you do remember that' - its usually something that happened before my bleed, & I have to say no I ****** don't remember, at the end of the day Nichola (girl i work with) I have a brain injury and I do forget stuff, I cant help this!I swear Dr's should provide work mates and boss's with an info pack on how we now operate after a sah & stop being so insensitive!!!!!! I feel embarrassed that I cant remember stuff at work, but i honestly cant and I think they think its an excuse sometimes! I am so glad i found this site, because at least u all understand exactly where everyone is coming from!!!Before I came on here, noone fully understands how we look well etc,but are still suffering inside! Rude,insensitive people! xxx

Kris I wanted to look into Meditation, I have always been a stressy person, im not sure if this contributed to what happened - Drs say not - but my pulse was always going ten to the dozen, so even my consultant said that I need to get some zen in my life! I dont know where to start with it, did u get some tapes or go to a class? I also plan on going to Yoga to chill out and swimming weekly! Thank you for your kind words, i guess I will have to live with never knowing why blood has appeared in my brain and left me feeling odd! x

Oh your all crazy on here!! Why oh why did they shave your eyebrows??? Thats funny! Enjoy cleaning the kitchen floor Jus.....everyone knows whats happend to me so when i am sat in the window laughing all day they will just think its all part of the bleed and think i have gone mad-i actually think i have sometimes! I'll let you know how i get on!!! Laughing is the best medicine isnt it (i think thats what you say) Big hugs to all my fellow btg's xxxxxx

I work in Lettings at an Estate Agents, im sat right in the window, so ill just be giggling all day thinking! Glad we have made you laugh Jus, its good to know we r all in the same boat isnt it xxx

Oh god,its good to laugh! ive just been and checked my pupils -yes they dilate ok!!! now for the arm and leg pushing and pulling, the raised eyebrows, sticking out my tongue - oh and I do remember im called Bev Edwards and live where i live! - Crikey, what will they think at work tomorrow when I ask if I can pull them to me and push me away with their legs and grip their hands tight about 5 times???-Yes i have lost it!!! Ha ha ha xxx

Ha Ha Ha Ha i really did laugh out loud then and scared the dog about the hairy man legs!!!! I ordered my partner to fetch me some razors along with clothes etc so I quickly shaved them on the ward b4 my angigram and cut myself to bits so the drs ,when they did the ward round, all focused on all the cuts on my legs i think they thought i had gone a bit mad, Andy only packed my red lacy thong so i had to wear that to the angigram they got a right treat!!! why oh why, we have to keep our dignity even when our brains are exploding-bet they have seen it all hairy man legs-the lot! Arr u gotta laugh or u would cry!!

And Gill thank you also....I know i need to start trusting! What else can u actually do other than that. I swear I will never ever take anything or anyone for granted life is far too short! xxxx

Jus I just had goose pimples reading that, thats really sweet. Im going to work tomorrow for the second try and am so scared to say the least because i know noone understands & just because i look ok, they think i am 100% well, but im not and dont think I ever will be the same! Its the anxiety with me, i feel a pain in my head i go into panic mode or dizzy or ANYTHING i feel as if im in panic mode waiting for it all to take a down turn and it to all happen again but this time worse! How do u ever forget whats happened? i even do all of the pushing and pulling things in my arms & legs that they make u do in the hospital and squeezing my eyes together to make sure that I still have feeling in my arms,legs and face and look at my pupils to make sure they dialite. I have been bk to the Dr countless times to ask them to check my eyes to make sure there is no swelling at the bk of them like when it happened....i am Oificially MAD! Thank the lord for this site and being able to rant on is all I can say! Thanks for listening xx

Or Penny,your a star! I know there is something dodgy going on,but they are on the case and sending me for tests, so fingers crossed it will get sorted. I go the end of this month so we shall see! Thanks again! xx

Hi Jus My story is a bit different as I have had a hemeridge without cause so far, so nothing coiled, which kinda frightens me more because goodness knows where the blood came from and if it ever will happen again. I noticed that you were sent to LGI like me...Were you under Dr Phillips?? I have found him ok so far, but they never seem too open with info. They must see a lot of people with bleeds about 3 per week apparently,so they must know what they are talking about?! Thats the thing with me,I have lost confidence in my own body and Dr's coz i saw 8 different Dr's at my G.P and Walk in clinics before one of them sent me to A&E where i had a CT scan and the bleed was seen so I was rushed straight to LGI for more tests and monitoring, despite the worst head ache of my life, vomiting sleeping loads and feeling out of it, no wonder i question everything Drs say now, and that has left me with severe anxiety! I too look at my 2 yr old and partner everyday and wonder what will happen next, I keep wondering if this will fade coz i cant live in fear forever! This site is amazing, there is always someone around to answer your q's and put your mind at rest which is what we need the most! Stay strong Bev xxx