debbie b

Morning!

I'm now 6 1/2 months post sah. Apart from seeing my GP every 6-8 weeks or so, I have had absolutely no aftercare whatsoever. Is this normal? I've to have my blood pressure checked every 2 weeks and even this I do myself. There is a machine at the surgery where you put your arm in a sleeve and it prints out your BP, you hand this in to the receptionist and that's it.

I have been in touch with Headway, we are waiting for funding.

Headway have applied for me to have a care manager, I have called the Young Adult team (me, a young adult! ) and we are waiting for a case worker to come available.

I am waiting for the DVLA to give me their decision.

I am waiting for my 6 month check-up results to come back from Oxford.

There's a bit of a pattern developing here and I'm getting frustrated. I'm finding it hard not to think dark thoughts, I feel a little like I'm being fobbed off my people who a.) know I'll forget about them in an hour or so or b.) know I don't have the mental capacity to be more assertive.

I am sure that this is not really the case, but I read on here about some of you seeing neurologists and having your questions answered. I haven't seen a neurologist since the day I left hospital. I am really starting to feel forgotten. Because I am 'doing ok' it seems that it's been decided we don't need anyone else. I don't even know if there are services I should be accessing and simply don't know about them.

I'm sorry if I'm sounding a bit negative here, I just wondered if I'm missing something obvious?

Dawn x

Hi Dawn x well don't want to moan but it's about 14 months post sah/cranitomy,titanium clipped and i can honestly inform you that i have never had my blood pressure checked by any medical person, like you i do it myself.

Furthermore i came out of Hull Royal on the 18th Jan 11 and never saw a medical soul except my GP until 12/10/11 and i had to insist on this appointment .

Since then because i cannot get any other appointment to review my seizure meds until 4th April my GP has taken me off the tablets they were mking me ill, aggressive and so lethargic. My Gp didn't want to take me off but he had to make a decision due to my health , i'm so frustrated, like you i need to talk to a neuro staff. I have in the past spoke to the ward i was on before discharge but they are so busy and i appreciate everything they did for me during my stay I actually feel bad for complaining x so frustration is quite normal considering what we have all been through xdon't let anyone fobb you off Dawn, you have a right to aftercare but we have to stand up to the medical profession or we will be forgotton x

Hi all, just wondered if any of you have had tingling in face, lips tongue? Have had it a couple if times recently. Been to Drs who checked ne over. Nothing to do with sah, but panicking a bit cos had a bad headache last night and sporadic brain pain today.

Would be grateful for any advice

Juliette x

14 months post sah

Hi x I'm also 14 months post SAH x i get lots of vibrating around my mouth and sometimes from the souls of my feet upward .I feel as if i am vibrating on the outside but i know i'm not . I think this is related to my simple partial seizures but no-one has ever told me it is only a practice nurse thinks that it could be part of the seizures.

No-one has ever taken my blood pressure or even dscussed anything to do with the meds for the seizures my G P had to make the decision to take me off the meds as it was making me aggressive because i couldn't get an appointment at Hull until 4th April, I kept complaining about a severe gripping pain in my brain but no-one was listening until a couple of weeks back . Much better in myself but still having seizures .After an SAH i think it's only natural that we panick about any headaches or brain pain after all I think we have all been through a tuff time with little aftercare.x

SAH date , 29th Dec 2010

thinking of you x

Hi

Has anyone developed epilepsy or suffered from seizures post SAH whereas they never suffered before? If so how did it start(ie twitches, spasms etc) ? How far into recovery were you? and how are you now?

Sami xx

Hi x

I'm still having seizures x been taken off my meds it was making me aggresive x i apparently had a seizure whilst in he ambulance. Sometimes i can have many throughout the day and then nothing for days. I'm suffering 2 types ,abscences or peti mal x i think and simple partial seizuresx I'm back in Hull to discuss my meds but not until 4th April.I'm 14 months into recovery and get frustrated about the seizures, My GP tries his best but as he says he is not a neurologist and i have only had one appointment to see anyone in 14 months x I'm trying hard to cope without meds and up to now i'm doing ok x thinking of all x

Welcome Nicola,

I suffered Terson syndrome n my left eye after my SAH x Had an op and luckly got my sight back x It's been 14 months and i still am having some seizures x Had to come off my meds as it was making me aggressive x much better x thinking of you x

Thank you everyone for your continued support, so kind of all of you to take the time to respond

Well, today has been amazing, I arrived at the hospital this afternoon to find Chris had been taken off all tubes except his feed line. He was talking, sitting up, sort of, his eyes wide open. He had been complaining that he was bored and was asking for me!! I was like wow! Now all that is positive and lovely and so pleased he is so aware, the only thing is he was very frustrated, I expected this tho but felt helpless, he wanted to go home right then and was getting cross that no one would get him up! He was also swearing and saying he was going to get the police if ppl were not helping, also he was being very sexually inapproriate to me and the nurses. The nurses were great and said its common, his brain had been through a lot and he was bound to be confused etc.. I was a lil embarassed but I know he was unaware as he would never normally behave like that but it did take me by surprise lol! To be honest it made me giggle a lil bit. Besides that he was also quite normal oin some of rhe thhings he was saying. He knew he was in hospital, he remembered all our cats names and we have a lot lol he put his arm round me and gave me kisses, then a nurse got him a radio and he quite liked that for a lil while. So it was quite eventful, after all the negative news last week and here he was chatting away , even if he was a bit rude and kinda grumpy it was fantastic!! by 7pm he was nodding off so I let him relax and went home for the night. Ready to see what tomorrow will bring! They will be moving him from ICU into a ward next few days x

Hi Alison so glad to hear Chris is doing well x

I must admit after reading your text it reminded me of my stay in Hull after coming off most of my tubes all but feeding tube i apparently rang my hubby and told him the nurses were trying to kill me x they said it was the meds xi saw teddy bears following one the nurses and a brown booted leg wearing a pink ra ra skirt coming out of the ceiling. lol x i remember being asked if i knew who one of the men at my bedside was i thought he was the lead singer from the pop band Fine Young Cannibals , i guess we all have some strange memories of our stay in hospital x we do get stronger x thinking of you both x

welcome to BTG x

hi Janet x welcome to BTG, i'm new to the ste too x i'm 14 months into recovery and getting there slowly. debbie b

Hi Karen,

Like you I have been aware that people with have an SAH do in most areas get a raw deal, and I have spent many months in our area trying to improve that as I think it is your right to have good after care and community support for life .... Your right it is not clear that it is a stroke but it IS JUST THAT and should be recorded as such on all stroke registers...

We need to do more and that is my aim now up here, and believe me I will push this...

Thank you for your kind comments Karen...

Take care, love Brian

Brian M A xxxx

Stroke Survivor

H i Brian,

I'm a SAH survivor, I also was informed i had a bleed previously that had caked the back of my skull and that they do not know how long ago this bleed occurred.

I was taken from Grimsby hospital to Hull Royal where coiling failed so i had a craniotomy

and was clipped.Although i was looked after fabulously during my 3 week stay the minute i left i have had to fight for an appointment in the 14 months of recovery i have had one appointment and had to arrange this myself and insist for a review about my medication for seizures.

What i find interesting is your comment on looking for warning signs. I was led to believe that unless they had accidentiatly come across it there was no warning signs, but i do not believe this for many years i suffered with terrible headaches,vomiting,sinus pain, pain in the right side of my temple and the taste of blood,ear ache, neck pain and various other problems which was always regarded as depression and i was even sent to rheumatology and diagnosed with Fibromyagia, I always had pain in my face but was told to take anti allergy tablets. A short time before the haemmorrage i told my family that i believed i had a tumour in my head and i wanted it out.

So i believe if doctors listened more instead of everything being about being depressed then perhaps early diagnosis would help save more lives. thankyou

debbie b

Thank you Jilly and Carolyn for you kind posts. Sadly Chris has deteriorated this afternoon, his brain is very swollen and they have advised me its not very positive at all. He is going to have an op tonight to remove some skull to let the pressure off the brain and remove dead brain. All sounds very grim and I am pretty frightened to be honest. I will of course stay as positive as I can. I don't know how survivable this is and if he does survive the night what sort of condition he will be left in. Probably severely disabled I am told, so I am feeling bleak and lost in my heart.

Thinking of you both x

Hi Debbie, my SAH also left me with Tersons Syndrome in my left eye. It was so bad I was almost blind in that eye.

I also had a successful op.

Thanks Penny x i had my op at Hull x they were fab x it is scary x I hope things are better with you x thanks for reply x debbíe b

Morning

I can't believe that 6 months have gone by! This afternoon, I have an appointment at Oxford Radcliffe for an angiogram and MRI. I couldn't sleep last night, my arms were both dead and I just could not get comfortable. Finally nodded off at about 4 am and was up again by 8, I now feel like an absolute zombie!

A lot has changed in 6 months, when I left hospital I had virtually no memory span at all and bimbled through each day in a haze. Now I can remember what I did yesterday. I couldn't read at all, but now can read a novel in 2 days like I used to. I can walk further, no longer have taste distortions at all and rarely get headaches. I am looking forward to the changes that the next 6 months might bring

I am a bit worried about the angiogram as I will be awake this time, although I have read online that I won't actually be able to feel the catheter going up through my body. I am looking forward to seeing the hospital again, I have virtually no memory of my 3 weeks there and wonder if I will recognise parts of it. Maybe when today is over with, I might start sleeping again. I was doing quite well for a few months but in the last few weeks sleep has become my nemesis

I hope you are all well and have had a pleasant weekend,

Dawn x

Hi Dawn,

Hope all is well.

I should have had an angigram on the 2nd December 2011 but i cancelled, i was too scared. thinking of you x debbie b

Hi Debbie

Welcome and glad you managed to find us we have lots of wonderful members who will make you feel right at home and be able to understand how you're feeling. Any question just ask there is always someone around.

thanks Janet x struggle getting around x not good on comi x

I was wondering about headaches, when, what they feel like, how often, and how long has it been since SAH? I do not know if I am allow to ask what you do about them. No specifics just massage or medication etc.

It has been about 4 1/2 months for me since SAH, I get daily headaches still. I wake up almost every morning with a sinus like headache which sometimes leaves after about a hour. I also get shooting pains to my temples and sides of my head mid day. I need to lay down at least 2-3 times a day and when I do my skull feels bruised or something- it is tender and I have a hard time finding a spot to lay it down when it does not add more pressure. I know I am improving because I am able to do little more each week. But I just wonder what others feel like with their headaches? I do not take pain medication very often, some OTC pain once in awhile. It all tears my stomach up too much. I also stopped the migraine/seizure medication after 2 weeks because I was a mental mess with it.

Thanks for your help. This site keeps me sane and has helped me more than words can express.

MaryB

Hi Mary x

the dreaded headaches, i panick each time i get one and believe or not i have had 10 headaches in the last 14 months since my SAH. For me 10 in 14 months has been a doddle i used to suffer many more than that in any given month before the SAH

Facial pain, vomiting, sinus pain. earache. a throbing pulsating pain in my right temple would always render me practicaly unconcous. but with all this and other symptons pain in my kneck and in my spine i was told i was only depressed and at one time sent to rheumatolgy were i was diagnosed with FIBROMYALGIA.(how wrong they were)

I too have stopped taking my anti-seizure drugs they were making me aggressive my GP decided it was for the best.

Still suffereing with simple partical and abscence seizure but im coping ok at moment.

I found that some of my headaches recently are due to being dehydrated so i'm trying to drink more and i think it's working x Thinking of you x

well went in to jr oxford for more coiling only to be woken up and told they couldnt get to them and that there are 2 more so i have six now .that nite i lay in my hospital bed thinking this is it no hope and even more of them .im not a bad person have never hert anyone .i work as a carer and love my job .then morning came doctors came and said they would be in talks with the other doctor about clipping them it would mean a few more ops but can anyone tell me how they felt after clipping was done how much hair they took of how big the skar s are and how long i will be of work im so scared .i dont sleep well at nite people look at me like there is nothing wrong but i cant understand myself so how can i make others understand

Hi there,

well firstly i can tell you that i have been clipped x lol x a titanium clip to te precise, after 5 hours to try to coil my aneurysm which failed i had a cranitomy right side of head about 4 inches above my ear. I have no scarring visible and they never even cut my hair on the top only underneath. After the clipping i have some numbness around the area but this has improved. You are entitled to be scared and don't worry how people look at you,WE all know and understand how you are feeling.14 months on and i'm still a little scared x

As for being off work it probably is different for everyone of us x

Thinking of you x

Hi, I am Alison from Crawley in Sussex. My partner suffered a SAH on Saturday 4th Feb 2012. I am still a lil in shock as it only happened few days ago but so thankful that I found this site for support and help.

Hi Alison

I'm glad you found this site so early on it really is a help. i didn't find it until a few weeks ago and i had my SAH 14 months ago. I wish your partner a speedy recovery. My stay in Hull helped me recover within 3 weeks of the Cranitomy and then i had a further op to rectify a detatched retina x I am on the mend so with friends and family im sure your partner will soon be home x thinking of you both x

Welcome to BTG, Debbie! You have been through the mill and back! You'll find this site most helpful - lots of great people here who've been through it too, maybe a little different for each of us, but we all seem to share many of the same after effects.

Recovery can bring some scary and anxious times because we don't always know what to expect, I certainly felt that way - and after 2 years, I still, occasionally, get those anxious moments. But it does get better as time goes on. It's a process-this recovery thing!!!

I hope you or your husband keep after the medical folks for proper follow-ups! It's a shame we have to do that, but it's really important and can help ease your mind. Skippy's right about the water - drink loads and loads! It really does help to be properly hydrated.

Hang in there and know you can ask any questions, voice your concerns, rant and rave if you need/want to! We're all here for one another - the folks here have helped me in so many ways!!!

Hope to hear more from you

Big hugs across the pond,

Carolyn

thank you for your kind advice especially about being properly hydrated x this is an important issue x 3 litres a day in hospital x thank you x debbie b x

hi debbie

welcome to the btg you have done well and i wish you even more happiness for the future i would see your gp and ask for an urgent appointment at the hospital with a nuroligist who speacialise's in epilepsy my lin was given massive dose's and after talking to the epilepsy specialist all anti convulsents have been removed there are diferent drugs which controls the fits if the gp refuse's ask your surgeon to refer you you dont have to be pushed or fobbed off

the hospital asking the question have you been drinking is standard for i think most hospitals because sah are so rare so dont think to badly i dont post much now but i always pop in every day take care

thank you for reply x won't be on much after the 24th losing internet for a while but can use my sisters when i visit x thanks for advice x debbie b x

Hi Debbie

Welcome to the site and to the family.

You're early in your recovery so I'll say what to say to all newbies - make sure you drink plenty of water and rest when you need to. It's can be a long road to recovery but you're allowed to make as many pit stops along the way as you want.

It seems likes you have had both sides of the op with coiling and clipping. It is very scary at first and any twinge can make you panic. It can be the brain rewiring itself or the blood draining away. However, if you get really worried then get yourself down to A&E - they would have to take you seriously given your history.

Make sure you keep pushing for yor follow up appointment and maybe suggest to your GP that they put you on different meds to help with the seizures.

Thankyou for your reply x much appreciated x debbie b x

I would just like to say hello to everyone

My name is Debbie

I'm 51 and on Dec 29th 2010 i suffered an SAH,coiling failed so a second op a craniotomy was done, a titanium clipp.

After the op i was left with Tearson's syndrome and had an eye op to rectify this on my left eye.Whislt recovering in Hull my care was superb the staff of the whole hospital was fantastic, i owe so much to them.

Within 3 weeks i was on my way home to Grimsby with all the support and care i had made a remarkable recovery. Since coming home i have had to insist on an appointment as i received no follow up appointment for over 10 months i am still suffering with simple partial seizures and petit mal seizures but am coping ok with these.

My GP had to take me off the anti-epaleptic drug as it was making me agressive.

Like most of us with SAH getting a diagnosis seems to be difficult , i was told to shut up in A&E when i was in agonising pain

My husband was asked if i had been out the night before. Life is getting a little better each day now that i have been taken off my meds.

I still get scared when i have a headache and can tell you how many and how long each one has lasted. Sad eh!

thankyou for giving me this opportunity to get this off my chest, it really has helped x please excuse text x

Hi Brian and thank you for your post.... which is most encouraging.....

Unfortunately, if you ask the majority of SAH survivors if they've had a stroke, then they will tell you "no" ..... it's something that I've come across on this message board, time and time again ..... I only realised that I'd had a stroke, many months after my brain haemorrhage and that's through info from the web...... When I set BTG up, I still wasn't sure whether a SAH was classified as a stroke....

I like, the majority of the population, believed that a stroke is caused by a blood clot ...... I was never made aware when I left hospital, that I'd actually had a stroke as well as the brain haemorrhage..... If I had been given that information, then it would have helped me to adapt.....as well as my family.....

I really believe, that SAH survivors often get a raw deal with aftercare post SAH and that because many of us are younger than the normal strokee, that we are pretty much left to get on with things after being "fixed" with surgery (if caused by an aneurysm or AVM) ...... irrespective of how we've been left physically or mentally.....

Thanks for your work Brian, in raising awareness..... xx

Hi

After my cranitomy one of the doctors asked me if i remembered him to be truthfull i thought he was the lead singer from the pop group Fine Young Canabals, however that was the meds i was on. Whilst he passed my bed from the corridor he actually infomed that he had brought me Grimsby hospital to Hull Infirmary and that i had indeed had a stroke.The coiling attempt had failed so i had been titanium clipped x I am so lucky to be alive today as my neursurgeon explained that he didnt expect the outcome that happened and that it was shear luck on my part that i came out of the op as i did x I tried to thank him and is team but he just kept saying it was LUCK x since being sent home in January 2011 i was informed that i had been missed off the follow up list and didn't get a follow up appointment until 12th Oct 2011 this is the only appointment so far x Frustration and forgotton x but i have at least found this site x

Sandi - It appears angiogram negative SAH are a controversial and not well understood area of neurology and medicine.

I have read endless studys and debates on perimesencephalic bleeds and their lack of rebleeding and why it is so.

There is no agreement by medical experts on what causes the bleeds and they cant explain why there is a lack of rebleeding among the perimesencephalic group.

It seems that most doctors think the source of bleeding is a vein or capillary and not an artery like in most aneurysms. Its also believed that there is a drainage problem in perimesencephalic patients that can cause momentary back pressure against what should normally be low pressure veins, thus causing a burst.

If you read up on it you'll get some very interesting theories.

** your comment about neurosurgons being rotten communicators is SPOT ON !!! haha

when i was in the hospital my neurosurgon talked to me for about 12 seconds combined. when I asked what happened he said "your fine".

my follow up neurosurgon wasnt any better. i noticed they seemed to get very offended when you ask them questions and they dont want to bother with answering them

thats why i went on my quest for second, third and 4th opinions. most of what i learned though i learned from published studies on the internet.

My neurosurgeon didn't even speak to me when i finally saw him, he spoke to my husband, I lost my temper and then the surgeon laughed and explained in plumbers language what happened with my leak and how he repaired the leak.