snootybutnice

Thanks Win - it's funny you should say that about stress - I find that I can't cope as well as I could before with stress and now it makes me feel physically ill. Strange isn't it?! I think I'm getting a bit more worried about my health nowadays - and when I do get a pain I wonder if it might be the start of an SAH building up... I guess it's just natural to stop and think...'hey up...what's happening here'. Had my blood work done today so I'll give it a few days and book an appointment with the Doc to see what might be going on. xxx

Thanks Winb143 hahaha... don't you just love percentages  xxxx

Thanks Super Mario - they did tests on my heart before a major op last year and all is fine - so it's got to be something else. I'll keep pestering!!  

I had my NASAH (no known cause for my subarachnoid brain haemorrhage) in Feb 2012.

For the past year I have had head pains (on the right at the back of my head) that I haven't had before, walking fast gives me pain to my jaw (but my heart checks out fine) and for the past month I've been having something like muscle cramps along my left arm often in my bicep or around the inner elbow which sometimes moves to my upper arm, and last night to my leg a little and this evening I'm getting tingling in my left arm as well. I'm just wondering if anyone else has had the same?

I've just been diagnosed with diabetes and need to be retested before being put on something so I'm dieting hard on low carb diet to try and improve the situation (I'm overweight). Part of me wonders if I could be heading for another SAH - while the other part says it must be my diabetes which I'm getting checked out now with the doctor. 

Has anyone had what they would term as another SAH or feeling that an SAH might happen and if so, how did you feel? I'm not panicking but just want to get an idea if anyone else has experienced what i'm going through now. My SAH gave me a weakness on my right side but these pains on my left are enough to keep me awake at night so yesterday and today I've taken pain killers just to help me sleep until I find a solution. Sorry for rambling!!

Thanks everyone for feedback - really appreciated.

Well so far it is 4 out of 6 people who, just like me, have a crease on just their left ear following an SAH - which is 66.67% (and below the American Journal of Medicine which ran at 88%) ...but it's still early days yet so I'm hoping for more responses!

I wonder if it's a fluke that for those who DO have a crease, it so far seems to be just on the left side? mmm.... interesting to see where this goes!

Wouldn't it be great if we could say this is a potential warning sign for others to get themselves checked in order to reduce morbidity levels for SAHs?  The only thing is, I don't actually remember if I had the crease before my SAH or after - do you? (if you do, please mention that in your response).

A crease line on your earlobe (known as Franks Sign) is purported to be a tell-tale sign of a stroke and heart disease (I'm obviously focused more on the stroke example being a survivor of an SAH).

The Daily Mail (see link here:  http://www.dailymail.co.uk/health/article-4548952/Ear-lobe-crease-tell-tale-sign-stroke.html  said that scientists who examined 241 people who had experienced a stroke found more than three-quarters of them had the mark. It's thought that clogging of the arteries which increases the risk of a stroke also leads to poor blood supply to the ear lobes causing loss of elasticity and creasing. The American Journal of Medicine said 78 of 88 patients who suffered a full-blown stroke (88%) had creased ear lobes.

Other sources say an earlobe crease is a potential indicator of coronary artery disease and/or diabetes. 

My SAH happened back in Feb 2012 and I suffer a small amount of weakness on my right hand side of my body and the odd night twitches, but otherwise made a full recovery (one of the lucky ones) although I had hydrocephalus complications and needed my brain draining twice at the time.

I have a crease on my left ear. I wonder how many other SAH survivors have a crease on their earlobe too?

Hi Jimble

I also get weird hot spots in my body - on my arm or on my leg or on a specific point on my head e.g. forehead - and I've put it down to my body being pre-menopausal and just hot flushes which aren't full on menopause hot flushes but perhaps impaired hot flushes due to damage caused by the SAH. I don't know of course. I used to have tinnitus but after getting cranial osteopathy it resolved it. So glad to hear you recovered for a second time xx

Thanks everyone... well I guess I'm normal then! LOL xxxx

Thanks for the replies Realistically I suppose it can't be anything serious - if the hydrocephalus has returned then its returning more slowly than before - which is a good thing and if it's anything else I'll find out about soon enough from the MRI scans. I just like to know what's going on and don't like waiting LOL. Sandi - I know that feeling of feeling like a hypocondriac with doctors akjnutt-I'm not sure hon, it doesn't sound too nice getting an infection so hopefully you can get it cleared up soon with antibiotics. I guess there's always a risk of infection when they do ops but you would have thought that getting an infection from the tube meant that it wasn't properly sterilised - it may be worth following that one up with the hospital?

Thanks for all your advice I've gone with one where I can eat grapefruit as I love this in salads - and from memory cos I can't be bothered to go downstairs and take a look - the tablets are called 'Ritalin'? (I've probably got that wrong!). The take home monitor did monitor me for 24 hours and at hospital it went up to something like 172/xxx although it stayed around 145-155 most times (I forget the lower figure but it was around 80-90s I think). I'm a bit peeved that the tablets are supposed to be for life though. I told the doctor we'd reassess it when I've lost some weight - so she agreed!

Not feeling right at the moment though and hope it's just a blip.

Nic

x

I'm not sure if its the hydrocephalus (mild) returning slowly, but I'm getting a vice like pressure around my forehead around to my temples - and around the point where my neck reaches my head/skull. Does anyone else get this? (I had an MRI yesterday so if something is going on I should get the results soon).

Is it a high blood pressure symptom? I'm also very short tempered, cranky and can't seem to concentrate for the last few days.

Thanks Nic

xx

Hi everyone

I had a blood pressure monitor attached to me last week - and the upshot is that the doctor wants to put me on tablets/medication for high blood pressure (even though when I went in it to see them and they took a reading I appeared to be normal/low...which just goes to show how random it can be I suppose).

I wondered what everyone else has been prescribed for JUST high blood pressure (I know some of you are on betablockers and other hypertension drugs to help with headaches etc).

Thanks

Nic

x

I'm actually after some answers on sleep. I was very tired when I first came home (SAH end of Jan) and would sleep for 8 hours easily - but for the past few weeks I just can't seem to sleep the same. e.g from recall the last few days sleep has been:

Thursday 4:30am-10:30am

Friday 5:30am-11am

Saturday 5:30am-9am & 8pm-10pm

Sunday 6:30am-8am + natural sleeping remedy taken at 4am

It's now 12:48am Monday morning and still don't feel like sleeping but I do want to sleep ?

I'll have to start juicing lettuce to help with sleeping if things don't sort themselves out soon.

Nic

x

...but the weird thing about my lumps and bumps is that I never had an annie or operation, neither did a fall cause the bleed - so I have no explanation for it. Perhaps it's veins bulging with pressure and it's time to get another LP?! Oh and the only other thing I've noticed is that I've gone off doing housework ...wait, no... sorry...my partner tells me I had that before my SAH LOL!!

Nic

x

It's still early days for me - but I've noticed I have a sensitive dip in my skull I never had before, my mum tells me I have a lump on my forehead I never had before...maybe we're all imagining it!! I can't seem to sleep much before 2am nowadays. At night I hear a lot of wooshing sounds - like blood going to my head too quick and I've got extra sensitivity to cold around my face. But I think the last 3 are normal aftermath problems.

However I've not experienced anything really strange like most of you lot I now want a quirk too!! I feel like I'm missing out.

Nic

x

Hi Karl and Kel-Bel

It seems that it's not so easy to do a lumbar puncture. They took 2 attempts to do it in Southampton and 3 attempts in Basingstoke.

The first two attempts in Basingstoke I had to curl up in a foetal position and they kept getting my nerves which would spasm my left leg completely (well... the spasm was more like a severe cramp or what I think the Americans call a Charlie Horse?!) which made me cry out . The third time I had to sit up in bed and then lean over a tray with a chair propping up my legs - then arch over like a cat and suck my stomach in. Once the needle was in I had to gently lower myself onto my side, so that they could start taking pressure readings (the pressure changes if you are sitting up - and they can't measure it accurately while you're sitting up...if they draw off too much fluid by accident they can end up causing further trauma to the brain as the pressure starts to suck part of the brain down the spinal cord). Shudder to think about that!!

I got the nurse to photograph me (using a special app on my mobile phone which turns normal photos into what looks like sketches - as below). I used this app a lot to take hospital photos because it allowed people anonymity while at the same time getting a real feel for what it was like there - all part of my entertainment to relieve the boredom of being in hospital. I have lots of other hospital photos in my photo album!!

Nic

x

Thanks Carl for your warm welcome. I couldn't remember where I posted this and just found it again LOL!! Sorry for not replying earlier. Really appreciate your advice and support and nice to know that I wasn't the only one with a pain in the butt LOL.

Nic

x

Thanks Winb

Bed shortages: That's the only reason I came out of Southampton so soon really after my SAH - a few days after I was moved out of HDU they spoke about transferring me to Basingstoke - but Basingstoke had no beds available and so after 3 days on their waiting list, I spoke to the consultants at Southampton and convinced them to discharge me... (mainly so I could get a good night sleep without constant interruptions to help me get better quicker!).

Basingstoke definitely had bed shortages. It makes you wonder how they manage when they have multiple RTA's etc if they are running so low. What happens when there's an unexpected major catastrophe? It's strange that our local hospital is now so over-subscribed it can't take 1 SAH patient. I wish I really knew what was happening with our healthcare service. When I had to go to Basingstoke Hospital to sort out hydrocephalus 2 weeks ago, I was waiting 5 hours before they got me a bed (and an hour later I got a pillow!).

Nic

x

I've just spoken to DVLA and they told me that they were still processing my form which notified them of my SAH and it may take many weeks. I asked if my doctors said it was OK to drive, were they OK with it - as I needed to drive to work. They confirmed they were happy if the doctor has signed me off as being OK to drive. I've also asked them to send this in writing just in case (I'm not the trusting sort! LOL).

Nic

x

Hi MaryB

One good thing about Southampton Hospital (where I was) is that they gave you a pamphlet to explain the condition (generic overview) and that was really helpful/insightful - I read through it a few times. It wasn't a personal overview though and you didn't get it until you were leaving. I'm guessing that your hospital didn't give you this? Lesley the specialist nurse at Southampton wrote it and she also gave me her telephone number to contact her once out of hospital if I had any questions, queries or worries about anything, which was comforting.

I think one of the nurses on the ward one evening was the most useful though - she started telling us all she knew...saying that the brain has 3 layers etc. I always felt the doctors were "too busy" on their morning rounds to spend time asking them endless questions - so I never asked until the day before I left - and I was pleasantly surprised at how happy they were to talk.

However, looking back, it would have been nice if a doctor had sat with me for 10 minutes to go through my individual case and explain what happened to me and give me case notes - especially when family are visiting so they can hear it too.

Great idea to make a leaflet - as it's hard for family and friends to understand everything and I'm sure it helps you and them.

Nic

xxx

Hi Michelle

Thanks for your email hon

In answer to your question I treat the seriousness of the bleed in direct correlation to "how long it takes to recover afterwards" and "how many problems you have post-bleed". If I'd had an aneurysm and coil operation, but still came out of this as well as I have, I would still say that mine was a more minor SAH compared to others, and that I'd been more fortunate than most.

The thing is, it happened just 1 month ago on 29/1/12. I have no paralysis, yes I've got eye pain but no visual impairment, I seem to forget odd words but it's not badly noticeable, I've had hydrocephalus twice but it seems to have resolved - but if not I'll just get a shunt, I'm tired but I can still go around shopping for a few hours and went to work yesterday for several hours too. I worked a few hours from home today and today was also the first time I've tried to go without pain killers and I'm OK. A bit headachy, a bit lacking in enthusiasm but wow... lucky? yes I do feel incredibly blessed and lucky. I have a beautiful 8 year old daughter and partner - and if it had gone badly we (or if I had been one of the unlucky 50%) they might have had a very different future.

I've read so many other posts from others - many still having lots of problems several years post-SAH and I can't help thinking that if you had a scale of severity for post-trauma I would score low. Maybe my brother was my guardian angel during this time.

Hugs Nic

xx

Hi Mary

Glad you feel you're one step closer - but I agree with you that the doctors don't tend to tell you anything much. I wish they gave you a bit of paper when they release you from hospital which, in simple language, shows their findings - with an x on the spot for those with an aneurysm and a copy of the scan showing general bleeds.

I had NASAH on 29th January and it was probably the most minor skirmish compared to most others here. Today I haven't taken any painkillers - and although I feel very tired and some pain, it's the first day I can cope without anything They found a bleed from a CT scan but never found anything on the angiogram - the doctors told me they couldn't find the source of the bleed and that perhaps it had 'self healed'. They did a spinal tap as I was having severe headaches c3-4 days after the initial bleed and that had blood in it - then last week I had hydrocephalus again, so they had to drain off more fluid. I haven't had another bleed so far but again I've been told like others it is unlikely to happen again.

Prior to my bleed I had a lot of stress. I really thought this bleed was stress related, but the doctors said no. I was recovering from having my brother die in front of me from stomach cancer - we were very close and we worked together at his business. I then took over the business and was acting as his executor with my dad. I had been tired for many months beforehand but then again I had been working long hours covering both of our jobs. We'd also bought a new bed many months beforehand and I was having neck pain, which I assumed was the new pillow. + Last year I had pain in my face/jaw and thought it was heart related but had a stress test on the treadmill and all was normal. I was having a minor disagreement with someone when I had the SAH happen and I remember being particularly stressed at that point.

Unfortunately I don't think my experience will be helpful to you!

Nic

x

That's strange - what would they be checking for on the blood I wonder? That's upset me a bit now - I don't want to look forward to another blood test as they always have problems getting any blood out of me and always have to try several times. I come out traumatised I was told they just go with what your doctor recommends?! I sent my info to DVLA last week. How long has it taken you to get a reply from when you first sent in your paperwork?

Nic

xx

One of the girls on here mentioned earlier that the charge nurse told her: "February and October are 'aneurysm season' and they are very busy with patients who have suffered a SAH. Something to do with air pressure changes. So neuro units do have exceptionally busy times". Unquote!

Please give the date of your SAH - it would be interesting to see if there is a similar pattern with people on here.

As a start, here's mine:

******29th January****** (just a whisker away from "the season"!).

Nic

xx

RESULTS SO FAR

----------------------

January - 4

February - 4 (LizD noted a further 7 patients admitted in Feb with SAH)

March -1

April

May - 3

June - 1 (+ 1 aneurysm with no bleed)

July - 2

August - 4

September - 4

October - 2

November - 5

December - 4

Info taken up to teechur post

Liz - It's extremely interesting that the two people who have been the MOST positive about their experience in a hospital ward have been from Scotland (see post 3). I wonder if this trend continues...?! I never heard about an 'aneurysm season' being February and October. Mine was end of January so it would roughly fit in. mmmm... I love that they moisturised you after the bed bath - I just got a very ticked off nurse telling me off because I said I needed to go the loo afterwards LOL.

Kel - Poor you - I am not surprised you tried to high tail it out so quickly. Your care was clearly so below par that i hardly know what to say - there is nothing that can be said really as it is deplorable - but sadly I'm not shocked. Big hugs xx

Winb143 - I'm told that doctors are now finding they have to "prescribe" food and water on patient notes because there were cases of patients getting severely dehydrated etc as the nurses weren't properly checking that they were eating and drinking. (Although I don't know which hospital...all rather vague but held up as being true - and I wouldn't be surprised at all).

Nic

xx