Confused

[Kerry]

Hi I am a 45 year old woman and I suffered my SAH (unexplained) on 13 July. I had felt a bit odd and really tired and woolly headed for a couple of days previous to it occurring and put this down to effects of sleeping pills I had gotten from GP because I hadn't been sleeping well for a while.

I was going to a friend's party and we had only just arrived when I experienced the worst pain in my head which radiated down to my neck. I asked her for painkillers and sat outside for a bit to see if it would help but I just felt odd, not sick just agony in head and not quite "there".

My husband thought it was a migraine but when I got home I called out of hours service and they sent paramedics who advised I should go to hospital. On arrival I was told they thought it could be a severe headache but because of symptoms in head and neck would like to keep me in to check. I was taken for ct scan the following day which was later repeated with dye but they found nothing so they decided to do a lumbar puncture which confirmed the bleed.

I was transferred to hospital in Edinburgh on Monday for angiogram? Unsure if that or angiography anyway was prescribed pills to treat aneurysm just in case which was a nightmare as they had to try heighten my blood pressure as it is naturally low. I had the scan on Tuesday and it was clear save for the fact I apparently have unique plumbing in my brain...I always knew I was a bit odd.

I got out of hospital yesterday (17 July so was mot in hospital long?) with painkillers and am bemused. I don't quite know how I should feel, I am tired and still don't feel quite here, head ache and pains in buttocks and legs. I am sooo lucky and I realise this but feel a bit of a fraud. I don't know if I should be hoovering etc or what, and feel a bit like I am being lazy.

I have a bit of short term memory loss and am sometimes cutting off halfway through sentences forgetting what I was talking about and having problems thinking of simple words. Some of the things people hsve been through on here are awful and I feel like someone up therè must be looking out for me

Edited July 19, 2013 by Kerry

[iola]

Hi,

I am 47 and had my NASAH on Apr 9. Very similar to yours. Ferocious headache and stiffening down the neck. I was in the hospital for two weeks and had two angiograms while there and one six weeks later to rule out any aneurysms, malformations, or artery issues.

I was sent home with nimodipine and the other being keppra. Like you I have low BP so the meds made my heart race and the keppra kept me tired and dizzy. I had terrible back pain my first two weeks as well.

Best advice I was given is rest, rest, rest. You have been through a very traumatic experience and you need to heal.

Yes, blessed you are.

This is a great place for comfort and experience.

Iola

[Winb143]

Hi Kerry,

Firstly, welcome to BTG.

People on here will help you as they helped my daughter when I was ill, I was totally out of it my 1st year until I had shunt fitted, I had SAH/hydrocephalus(water on the brain).

I hope you will feel better soon, it's a long haul but we have made it.

Good luck for the future x and take it easy, have a break from housework xx

WinB143 xx

Edited July 19, 2013 by Winb143

[Louise]

Hi Kerry, welcome to the site glad you found us.

I was in the Western in Edinburgh ward 32 no memories of it though...

What you are going through seems all quite normal as it wasn't all that long ago just take it easy make sure you keep you liquid intake up especially in this weather (Scotland for once Is glorious eh!)

take care honey

[cheezo]

Hi kerry. Glad you found this site as it is very helpful and everyone is very friendly

Im bit differnt to you- i had an sah but they know where mine was from- none the less we are the same as in had brain bleed which is horrendous and put out of hospital with no information which is also horrendous.

I had mine on 8th may this year followed by surgery- craniotomy- on the 9th- was in hospital for almost 2wks but when i left was told nothing except You will be tired and dont think of going to work for at least 4 months, goodbye??????

Everyone is different but this site is really helpful- seems very quick to be out hospital- did they say nothing?

Drink 2 to 3 litres of water a day, definately helps the headaches

Hope your not feeling to awful, Lesley xxx

[kpaggett]

Kerry,

Mine was no known cause too. I couldn't move or talk for a bit at first. I am almost two years post SAH and still feel like what you described as 'being a fraud.' Sometimes it is really hard to sort out what is a mind set and what is really do to the bleed. Some things are quite obvious, but there are subtle things that you can't quite tell. Feelings of 'shoulds' as in should I be vacuuming are a given and have to be navigated one day at a time as your overall state may fluctuate greatly.

Going through not knowing what happened to you is also very confusing. There is a slightly different slant to SAH recovery for those of us with no known cause...however, we didn't need a craniotomy which we can be thankful for too so there is that side as well.

Things progress fast at first and then slow down, but everyone heals at different rates so keep up the hope and don't get discouraged even if things seem to be set backs. Recovery is really up and down, back and forth, good days and bad. Just let the ones you care about the most know what is going on with you from day to day to help them gauge what they need to do to help you out.

We are survivors and strivers.

~Kris

Edited July 19, 2013 by penny
inappropriate wording

[Kerry]

Thanks all its nice. Not to feel alone. I haven't tried to do much so far so not tested my limitations. I have noticed pauses during speaking and less tolerant to other people which is natural I suppose. I am trying to drink all the fluids which is suppressing my appetite quite a bit already losing weight despite not smoking. The pain in my buttocks and down my legs is the worst thing at the moment. Thank you all for responding to my thread. X x

[Karen]

Hi Kerry and welcome!

I had severe pain down my legs as well. I was told that it was the blood from the SAH draining/dissapating down the spinal cord and affecting/irritating the nerve endings. The pain did go, thankfully. Did you ask your Consultant/GP about it?

Good luck and take it easy for a while. xx

[Kerry]

Yes asked consultant just didn't realise how bad it is hardly notice headache but this pain awful. Hope it doesn't last too long. X

[Karen]

Kerry, I must admit that I found the leg and back pain worse than the headache, which was bad enough .... I was on morphine for it in hospital and it only took the edge off it, but it did improve and went away. It's horrid, totally feel for you.... go see your GP if it's really bad, as they might be able to prescribe a decent painkiller for it. xx

[Sandi K]

Hi Kerry, welcome to BTG!

I had a NASAH too and was only in hospital for three days. It's all a bit of a shock and it took some time for me to realize what happened. I had severe pain in my lower back after I came home. No one explained what it was and it wasn't until I found BTG a couple of months later that everything was explained to me including how serious the entire event really was.

The most important thing at the beginning is to rest. Just rest. And drink lots of water. Slow down and rest and take as much time as you can for healing.

Sandi K.

[Daffodil]

Hi Kerry

Take things easy and be kind to yourself, that's the main thing. Don't expect too much too soon.

I found a warm Wheatie bag helped me with the back pain.

Keep a journal of how you're feeling, that's useful. Cry if you want to( like the song says!) and rest and hydrate.

Hope to hear from you soon

Take care

[Kerry]

Thanks Sandi and Daffodil, all input welcome though regards what you said Sandi I don't really know how serious it is either all I know is been told to rest. I don't feel all quite here and it still doesn't seem real at the moment, I haven't cried or anything just kind of numb. I suppose might be protective thing in a way. See GP Thursday so if pain not better will ask about stronger painkiller I am taking highest co-codomal and it not helping much x x hope all who have responded are feeling well and taking care of selves x

[Sandi K]

Hi Kerry, the pain from the blood dissipating will ease up. I used a warm wheatie bag like Daff did and I alternated with an ice pack. I also walked around my house, it seemed to help if I walked slowly through the house holding ice or warm bag against my back. I couldn't sleep from the pain despite feeling more tired than I had in my life. Couldn't lay down for very long because it was so uncomfortable. Couldn't watch TV and listen to the sound. The pictures moved too fast and the sound didn't seem to match and the adverts were unbearably loud!

What happened to you was very serious and your brain will need some time to rest and heal. I tell everyone how special I am because I survived a brain hemorrhage. It's a pretty big deal. Surviving is the first part, taking care of yourself is what's important now. Give yourself time to rest and allow your brain to be quiet.

Seeing your GP on Thursday to discuss everything is a good idea. Many of us find that writing questions down ahead of time is helpful and take pen and paper in with you.

Sandi K.

[Guest Niyani]

I had my AVM bleed on April 25th they did an embloization

on the 26th waiting for Gamma Knife treatment. .

I understand like you my head still hurts and I feel unbalanced.Do drink a lot of water

I think we have realize this going to be a slow process.

I wish you all the best and we are very blessed to still

be here! All in due time I try to keep telling myself:)

[Kerry]

Hi all

I hope all are well. It is now nearly two weeks since my bleed and I am noticing more effects. My speech is very bitty and stutters mainly when tired or nervous. I am still having the not quite here feeling and cannot believe how easily I get tired. It's good to know there are others who know how this feels and my family are being very supportive. Now comes the realisation of financial problems as obviously I cannot work. Some people are saying I may be off work for minimum three months and then may only manage part time and I have decided not to worry too much. Have been in touch with housing association and got forms for benefits and will take things one day at a time.

As I said hope all is well with everyone we just soldier on x x

Kerry

[Louise]

Well done Kerry, one day at a time best way... take care

[MaryB]

Hi Kerry, Welcome to BTG. Sounds like you are doing everything right. I am almost 2 years out from a bleed from unknown resaon as well. I was in and out of the hospital for about 10 days or something like that. I too never cried - or since. I was numb and had no idea how serious any of this was and thought I would be back to normal in a few weeks.

Personally I still do not understand the events and funny how it took me almost a year or more before I think I even had the right questions to ask! Which I have not really asked yet!

Get well soon, take care, maryb

Edited July 26, 2013 by Skippy

[Teechur]

It just makes my blood boil that we can't seem to find out what is happening to us without seeking out the information on our own! Mine was described as a "very small bleed" and nothing to worry about. I was in the hospital for three weeks, but still no one acted like it was anything big (or maybe that was my perception). I was in CCU (critical care unit). Sent home with "rest and you can return to work on Monday".

You are being very wise to take things in slowly and understand that this may be long term. Doesn't mean you won't heal, it just may not happen as quickly as you hope (or as a short hospital stay would indicate). I have a friend who had one who had NO hospital stay and is still suffering from headaches two years later, although everything else is fine and she runs multiple marathons (26.2 miles or 42 Km) per month.

[Jimble]

Hi there and well done for coming on here and telling us how you feel - it really helped me reading what other people have gone through and made me realise that what i experienced others did too.

i'm just short 2 months away from my 1 year anniversary!!! - i DJ (as well as a teacher) and had been doing so the night before my SAH -went to bed at 4.30am woke at about 10.30 (being a dad i'm not used to lie in's anymore !!!) anyways spoke to a friend who was out with me as he had drunk quite a lot - myself had being drinking but wasn't excessively drunk (i was working!!) anyways spoke fine to him for half an hour got myself some cereal sat down had 3 mouthfuls and felt incredibly sick - to the point i had to go upstairs and take the foetal (check spelling ???) position otherwise i would have passed out - i dont remember a thunderclap headache or how long it was before the headache came on - just that i did have a really bad headache - to the point where if i moved my head throbbed like electricity - my wife asked me if i was ok and i just joked said it was the cornflakes hitting the alcohol - i believed i had a hangover!!! about 2 hours later my wife asked if i was coming with them to a party for my daughter i got up and forced my self to get dressed (still believing hangover) made it to the top of the stairs but then had to lie down before i threw up/passed out. I took some ibuprofen and managed to eat a little that evening, by this time my neck was stiffening. It was only that night that i thought things were more serious as i went to kiss my daughter night night - i bent down to kiss her and then it was just like someone had mega electrocuted me on my forehead!!! i cried out and clutched my head - my wife at that point said - hospital!!! and i said no - but did say that i would go and see the school nurse the next day to discuss migraines!! Anyways little sleep that night and in the am got up showered and downstairs but again felt sick and the need to collapse!!!So i went to A&E.

They did a CT scan and kept me in all day one doctor showing concern and going down the SAH route and then the doctors changed - at about 4pm the 2nd doctor said as i hadn't lost consciousness and the pain was in the front of my head and i could speak to every one coherently - it was a stress headache and sent me home! So it being diagnosed as stress and the male in me kicking in took all my pain meds and made tea and lived a normal evening (sorting my daughter out for bed etc - much to wifes objections but it was just a headache and i'd been drinking at the weekend so in my eyes had to get on with it)

Tuesday morning rang in work still didnt feel up to work - like you foggy dis orientated just wasnt with it - dont think i've ever felt so lame ringing in work saying i wasnt coming in because i had a headache!!! About 10 mins later the phone rang with a blocked number - which i presumed was work saying " what you playing at?? its a headache " i nearly ignored it but.....it was the hospital - my ct scan had been reviewed could i return to hospital

where i was told that they had spotted the area where i had bled - CT scan with die that day - then an angiogram the next day - was told that the bleed had heeled itself and that it was just recovery now - i was discharged on the fri

The whole process and for a month was a bit surreal like i was watching a film - people fussing and telling me what i should do - which i understand - wife telling me off for doing jobs at home!!

My advice to you is do what you feel like doing - your body will tell you if its too much - obviously following guidelines from your doctor like not bending down - that was the major one for me i struggled to fasten shoe laces for ages.

but i did do vacuming - i used to walk into town (10 min walk) i chopped the day up get up shower brekky - watch tv for half an hour an hour - do 10 -15 mins activity then rest but i did do cooking housework etc it kept me occupied and i felt like i was doing enough to do my share and put back in.

I returned to work 6 weeks after my SAH - everyone was like its too soon but the sick notes had expired and i felt able - school gave me a week phased return (which was completely inadequate but they had never dealt with anything like this before) - work was hard headaches returned i was tired very quick and spent nights coming home going to bed - i was doing my job but it didnt register - by the end of january - i went back to my doctors crying!!! i felt like i was in car with no doors going down an alley - i was going in the right direction but had no control how i was getting there.

Doctor prescribed a further 4 weeks off work and this time work referred me to occupational health - and this time i had a 6 week phased return to work which helped - i nearly went on the sick again 4 weeks later when i was struggling to get all my exam work completed and procesed! but managed to see it through

Main side affects - severe back pain for about 2 weeks after - headaches and really bad memory - which has got better - i've done silly things like put my clothes in the bin instead of clothes basket - left the lid off the kettle and boiled 2 dry - and i'm still a bit forgetful - i put a chalk board up in our house with tasks to do and use my iphone for reminders.

Noise - certain noise just bugged me!! usually crowds or kids playing just really went through me and couldnt hack it had to get away - which being a teacher didnt help but classroom noise was different to crowds -also i could dj and listen to music as this was organised noise but certain pitch just annoyed me

stiff neck - still cant look over my shoulder for more than 5 seconds without feeling a bit weird and recently with the warm weather when i was hot and bothered it felt like somebody was poking my brain!!

Having to multi task organisation processsing too much made me ill - i was head of my department at work but i found i just couldn't do the job and it was not helping me recover - so i stepped down to become just a teacher which helped - but like you i've had a significant reduction in income due to this and i'm now struggling - somebody mentioned about checking my life insurance that i may be eligible for a pay out - but i never followed that through - didnt want them to change my premium -

I never had a problem driving my car (apart from looking over my shoulder) and the doctor gave me permission to drive again after 6 weeks - although it was nearly 7 months before dvla re issued my license.

Talk to your doctor about what benefits you may be able to receive or your council / citizens advice - they may be able to help - but take comfort in the knowledge you are still alive!!! - it's only when i read other people's events that i realise that yes i survived what could have and does kill/seriously life change most people and that helps me

its a long road and in my case i feel nearly 12 months on that i am about recovered - my only life changes i have made is - i dont smoke anymore (not that i smoked lots before more social whilst out ) and i'm trying to get my fitness and weight somewhere where they should be.

Best of luck - (wow have i just written all that - hope it doesn't bore you!!!)

[Winb143]

Jimble,

Well done on typing!! and your recovery.

Welcome also Niyani keep happy xx

Keep Happy everyone as we are so Lucky to be here xx

Regards

WinB143

Edited August 7, 2013 by Winb143

[Teechur]

work was hard headaches returned i was tired very quick and spent nights coming home going to bed - i was doing my job but it didnt register - by the end of january - i went back to my doctors crying!!! i felt like i was in car with no doors going down an alley - i was going in the right direction but had no control how i was getting there.

Teaching is physically and mentally draining on a good day. I went back six weeks post as well and it was a disaster. I had such great students because I teach in a program where they leave their high school and come to me for half a day of IT training (computer repair, network admin). Ended up needing another 2 weeks off then 2 weeks half time. It still wasn't enough and I never made it through a full week that school year. If I had been in a comprehensive high school I would have had to leave my job. My last year before going to this current job I was teaching seven courses a day; not seven periods, seven separate courses within five periods. I could not have done that after my SAH.

Last school year was really challenging, but I made it through. I did have to take unpaid days as I ran out of sick leave, which was depressing. Summers are great, but the idea that I can rest up and be ready for work doesn't pan out. I get no difference in head pain if I lay about all day. It just hurts in bed.

But changes have come. I'm back to running; ran 20 miles yesterday after teaching a bootcamp. I do have to listen to my body more than I used to. My thinking is back, although the pain can interfere with recall and speed of thinking That's only a factor of the pain not the brain damage.

It does get better and yes, we are lucky to be alive. Some days I even believe that! LOL

[Susan McGoldrick-Meerdink]

They must do things differently in the UK. I had my perimesencephalic SAH on June 7. I was in intesive care for 4 days and then regular hospital unit for 5 more. I was sent to a brain rehabilitation facility for another 3 weeks. I too have terrible short term memory issues and pain in my lower back at the tailbone. I was told the pain is from the blood traveling down the spinal cord fluid whilst being asborbed by the body. Mine kind of pooled and didn't asborb back in so now I have a literal pain in the butt!

As for "hoovering", please don't! I am 3 and half months out from my bleed and my doctor still has me on severe restrictions. I am not allowed to hoover (or vacuum) nor am I allowed to lift anything over 10 pounds. The reason is so as not create pressure in your head that might cause a re-bleed.

I too have terrible guilt that my house is a mess. But I know when I do sneak a cleaning of it, I pay for it later with a worse headache than I already have and fatigue so bad it's like falling into a coma!

Be kind to yourself!!!!!!