The List of problems just keeps getting longer...

[Karl Gannon]

Please go easy, this is my first post, might be in the wrong section, sorry if it is, might offend some, sorry if it does, no intention to, just need some help, I am wanting to know how other people with SAH Haemorrhage are suffering, I want to know if what is happening to me is normal.

Mobility Issues (starting to get worse)

Leg Pains

Left hand shakes a lot

Body Convulsions

Depression

Headaches

General pain

Hearing Stuff

Seeing Stuff

Smelling Stuff

Throwing Drinks over myself(or food)

Incontinence at times (Urinaly) through not being able to get there on time

I spoke to my doctor about him sectioning me, he said the fact that I asked about it shows I do not need sectioning. But I can not cook, taking care of peronal care can take in excess of an hour, I can not work, I can not walk my dogs, everyone wants me to give up smoking (a contributing factor rather than the cause of my SAH) but how can I with all this going on.

I have really bad thoughts, but I would never act on them I feel it is a selfish thing to do (just my opinion, please do not judge me on this).

My doctor has been great and it seems now like help is starting to trickle through, just had our first financial problem, think we have 2 more months before our lives fall apart in that way.

Had my SAH aged 34 on the 1st of feb, 1 week in intensive care, 4 weeks in a ward, I was walking around, my only issue was pain, now look at the list.

Yesterday, I was walking on frogs (seeing stuff) Smelling toffee apples, my dog I kept thinking was dying, I kept letting my cat in but it kept getting back outside, no windows or doors open.

I suppose I was hoping to hear about how other people have attached things to their SAH and not feel like I am going nuts, even though I sort of am, lol

Cheers to those that can help me.

[Karen]

Hi Karl,

Did your Doctor see this list of problems that you're experiencing? Thought that I would ask you that first as I'm wondering whether he's treating you/referring you for any tests etc?

[Louise]

Hi Karl

Are you on medication at all - maybe account for Hearing/seeing/smelling things, just a thought...

Im glad things are starting to trickle through you have to ASK for help for financial stuff it dosnt come to you CAB is a very good place to start on that one.

Was that 1st Feb this year? - which isnt that long ago really.

Take care

[Winb143]

Hello Karl,

If worried always seek medical advice.

I was out of it for a long while, when I came around I never stopped chatting and singing. I was so pleased to be

alive.

I had bad taste in mouth, needed glasses, was told I'd never walk again, up to 60/100 yards now before back aches.

I cried a lot, laughed a lot, and got the hump a lot.

Look back in 3 weeks then another couple of weeks and see if you have improved. Never give up.

I feel like I have a whooshing sound in ears also (forgot that one) headaches are only when stressed.

Do not stress yourself, now give your brain time to heal and drink water, loads !

Be Well

WinB143 x

[MaryB]

Karl,

You must print that post and bring it to your dr. I wonder as well if you are on any medication. The anti Seizure medication did not agree with me etc.... I hope you take this seriously and seek your doctor out today. I think we all have similar things going on but it is when we are way over tired. As well as some of the other medications many of us are on.

Do you have help at home? Do you have support around you?

Do you (do not judge me) have someone helping you with medication (don’t think poorly of me for asking I lost my medication a few weeks back and tried to figure out why I had none etc..... took me several day and phone calls to pharmacy why I was out of a refill I just got recently recall that I had put it somewhere "safe".

Are you in the US or another country?

I have many selfish thoughts and I could go days without speaking to anyone when I am feeling bad but in the beginning it was always bad if I am recalling that correct. I just did not want to talk to anyone nor could I ask the questions that needed to be asked. I am still that way a bit. I just do not want to be bothered. I found at one family doctor appointment I had printed off something I shared here on BTG when I was at a low point to show my doctor so he knew what I was really feeling on those bad days and it helped. It is survival mode I think.

Kindest Regars, mary

[Daffodil]

Karl

The effects post SAH are many and curious, it's like the brain Spins a wheel at the beginning of the day and you get where it lands.

If any have got worse suddenly or increased in any significance then please you must go and get checked out. Most gps dont realise The effects of a bleed can cause some issues later on so push to be rescanned. I'm not suggesting a rebleed but worth being sure nothing else is goin on as that can cause some of what you have described.

I'm sorry you are having such worry in addition.This won't help as your poor brain won't have the reserves to use energy on it. As Louise said there is help but you have to shout for it. Do you have someone who can help you shout? Shouting not good for brain either!

I was 39 when I had mine. My world turned upside down in a blink and it's not back the right way up yet but it feels more steady now. The early days are so unsettling and scary and long but you're not alone. You will get through this.

[Daffodil]

Actually you know what, I think you need to check this out.

I started going backwards about three months post SAH. A lot of what you describe. My GP sent me to the A&E and phoned them so I was seen straight away to scan to make sure the ventricles weren't enlarged. Mine were. That is Not uncommon after an SAH. Many people just need to have have a lumber punctures to drain that fluid off.

I guess I am not trying to scare you but to say you should check it out. Can you phone the Hospital who treated you initially and ask to speak to one of the registrars. I would. And did.

[kpaggett]

Hi,

Your story is similar to mine. I was in intensive for a week, hospital for a month too. When I got out, a flood of symptoms happened to me and they all seemed catastrophic at the time. That's one thing my new brain tend to do is ramp every little thing up into a big ordeal. Nonetheless, even as I recognize it, I still do it. One of the hardest things for me is to live with the ever changing role it plays. Just when I accept one thing, it totally stops only to have another crop up.

The things that helped me were yoga, mediation, and letting go that my doctor knew or could change my symptoms...I just had to live through them myself and no one else knew better how to do that than me. No scan, no medication, no time discussing my symptoms to a person who never saw a NASAH before. I did seek help from a neuropsychologist that was the best help I ever got, I wish that every person who almost dies would get referred just like you do for physical therapy.

I could list my symptoms then, but they would be about the same as yours. The sounds...how loud they were. Now still sometimes I can't stand it.

Keep striving,

~Kris

Edited May 16, 2013 by Karen
medical opinion deleted re:forum rules

[Karen]

Hi Karl,

Just to let you know, that no, you're not going mad or nuts! Many of us have experienced quite a few things on your list.

We can't offer or give medical advice on this forum, as none of us are qualified to do so and if you see anybody doing so on this site, then you should completely ignore it. Those who post, can only give a reply as to their own personal experiences, which may not mirror your own.

You don't state what hospital you were treated at, but some Neuro Hospitals in the UK will have a specialised SAH/Neuro Nurse that you can contact. It's a bit of a post code lottery as to where you live, but if you have, then it's worth contacting them with your concerns.

If not, try ringing or emailing http://www.brainandspine.org.uk/ This organisation deals with all types of brain injury, including SAH and they have qualified Neuro Science Nurses who will be able to help with anything medical that you need to ask. They also have a forum. Never be worried about asking anything that you might feel to be insignificant.

As Daffodil has also pointed out, you can ring the hospital that you were treated at and ask to speak to your Consultant's Secretary.

I was once told by somebody post SAH, "That GP's know a little about everything" but they don't specialise in one particular field, so it's always worth posing the questions that you need to ask, to somebody that does know.

There are a lot of people on here, that have suffered depression, anxiety and post traumatic stress too ... none of these, help the physical symptoms either. I've had all three and wish that I sought help a lot earlier, rather than thinking that I could cope alone ...or should I say, was kind of just left deal with them, as there wasn't much advice given on the subject/if anything. I sometimes feel that the mental health element post SAH is worse than the physical aftermath.

You really do need to get yourself checked out with what you have listed above ... you may have already done that, but you haven't said, so it's hard to reply to anything specific on your list.

Take care xx

[Karl Gannon]

Hi Karl,

Did your Doctor see this list of problems that you're experiencing? Thought that I would ask you that first as I'm wondering whether he's treating you/referring you for any tests etc?

Yes I am referred to the mental health team and a neuropsychologist I am also having an independant living assistant for 3-6 weeks and possibly attending headway once or twice a week.

[Karl Gannon]

Hi Karl

Are you on medication at all - maybe account for Hearing/seeing/smelling things, just a thought...

Im glad things are starting to trickle through you have to ASK for help for financial stuff it dosnt come to you CAB is a very good place to start on that one.

Was that 1st Feb this year? - which isnt that long ago really.

Take care

I am on 20 pills in the morning, lol and a fentynl patch 50 mcg so yes, but the pain still fights through. I had CAB fill out my DLA forms but still heard nothing.

[Louise]

Hey Karl, thats good your getting help a neuropsychologist is good (been there done that) & Headway is great that'll really help...

[Karl Gannon]

Hello Karl,

If worried always seek medical advice.

I was out of it for a long while, when I came around I never stopped chatting and singing. I was so pleased to be

alive.

I had bad taste in mouth, needed glasses, was told I'd never walk again, up to 60/100 yards now before back aches.

I cried a lot, laughed a lot, and got the hump a lot.

Look back in 3 weeks then another couple of weeks and see if you have improved. Never give up.

I feel like I have a whooshing sound in ears also (forgot that one) headaches are only when stressed.

Do not stress yourself, now give your brain time to heal and drink water, loads !

Be Well

WinB143 x

Thanks,

Have the bead mouth also, am drinking lots, have alot of pain walking, about 10 steps and I stop (not sure of distances) I get very paranoid when alone like now I am sure someone is circleing the bungalow and wants to get me, how stupid is that, lol

ty

[Karl Gannon]

Hi Karl,

Did your Doctor see this list of problems that you're experiencing? Thought that I would ask you that first as I'm wondering whether he's treating you/referring you for any tests etc?

I am having mental health, and neuro all this month and support from social services also.

ty

[Karl Gannon]

Karl,

You must print that post and bring it to your dr. I wonder as well if you are on any medication. The anti Seizure medication did not agree with me etc.... I hope you take this seriously and seek your doctor out today. I think we all have similar things going on but it is when we are way over tired. As well as some of the other medications many of us are on.

Do you have help at home? Do you have support around you?

Do you (do not judge me) have someone helping you with medication (don’t think poorly of me for asking I lost my medication a few weeks back and tried to figure out why I had none etc..... took me several day and phone calls to pharmacy why I was out of a refill I just got recently recall that I had put it somewhere "safe".

Are you in the US or another country?

I have many selfish thoughts and I could go days without speaking to anyone when I am feeling bad but in the beginning it was always bad if I am recalling that correct. I just did not want to talk to anyone nor could I ask the questions that needed to be asked. I am still that way a bit. I just do not want to be bothered. I found at one family doctor appointment I had printed off something I shared here on BTG when I was at a low point to show my doctor so he knew what I was really feeling on those bad days and it helped. It is survival mode I think.

Kindest Regars, mary

I am in the UK and my doctor is very aware, I asked to be sectioned and he talked me out of it and instead is helping with medication until I see the mental health team. I am getting lots of support I just want to ensure this can be normal and I am not having an issue due to the fusing of the skull being a few mm lower than my skull.

ty

[Karl Gannon]

Karl

The effects post SAH are many and curious, it's like the brain Spins a wheel at the beginning of the day and you get where it lands.

If any have got worse suddenly or increased in any significance then please you must go and get checked out. Most gps dont realise The effects of a bleed can cause some issues later on so push to be rescanned. I'm not suggesting a rebleed but worth being sure nothing else is goin on as that can cause some of what you have described.

I'm sorry you are having such worry in addition.This won't help as your poor brain won't have the reserves to use energy on it. As Louise said there is help but you have to shout for it. Do you have someone who can help you shout? Shouting not good for brain either!

I was 39 when I had mine. My world turned upside down in a blink and it's not back the right way up yet but it feels more steady now. The early days are so unsettling and scary and long but you're not alone. You will get through this.

I will ask for a re-scan, I hear people outside trying to break in, it scares me but then I know it is my head, It is sad I am not alone, I would not wish this on anyone but re-assuring.

Thank you

[Karl Gannon]

Hi,

Your story is similar to mine. I was in intensive for a week, hospital for a month too. When I got out, a flood of symptoms happened to me and they all seemed catastrophic at the time. That's one thing my new brain tend to do is ramp every little thing up into a big ordeal. Nonetheless, even as I recognize it, I still do it. One of the hardest things for me is to live with the ever changing role it plays. Just when I accept one thing, it totally stops only to have another crop up.

The things that helped me were yoga, mediation, and letting go that my doctor knew or could change my symptoms...I just had to live through them myself and no one else knew better how to do that than me. No scan, no medication, no time discussing my symptoms to a person who never saw a NASAH before. I did seek help from a neuropsychologist that was the best help I ever got, I wish that every person who almost dies would get referred just like you do for physical therapy.

I could list my symptoms then, but they would be about the same as yours. The sounds...how loud they were. Now still sometimes I can't stand it.

Keep striving,

~Kris

Kris,

It is so reassuring it is not just me, i was just hearing people out side, there was, next doors window cleaners I had to check (with a knife) I am so scared and the doctor knows everything, he is helping with mental health assesment and all sorts, medication. thanks for responding

karl

[Karl Gannon]

Hi Karl,

Just to let you know, that no, you're not going mad or nuts! Many of us have experienced quite a few things on your list.

We can't offer or give medical advice on this forum, as none of us are qualified to do so and if you see anybody doing so on this site, then you should completely ignore it. Those who post, can only give a reply as to their own personal experiences, which may not mirror your own.

You don't state what hospital you were treated at, but some Neuro Hospitals in the UK will have a specialised SAH/Neuro Nurse that you can contact. It's a bit of a post code lottery as to where you live, but if you have, then it's worth contacting them with your concerns.

If not, try ringing or emailing http://www.brainandspine.org.uk/ This organisation deals with all types of brain injury, including SAH and they have qualified Neuro Science Nurses who will be able to help with anything medical that you need to ask. They also have a forum. Never be worried about asking anything that you might feel to be insignificant.

As Daffodil has also pointed out, you can ring the hospital that you were treated at and ask to speak to your Consultant's Secretary.

I was once told by somebody post SAH, "That GP's know a little about everything" but they don't specialise in one particular field, so it's always worth posing the questions that you need to ask, to somebody that does know.

There are a lot of people on here, that have suffered depression, anxiety and post traumatic stress too ... none of these, help the physical symptoms either. I've had all three and wish that I sought help a lot earlier, rather than thinking that I could cope alone ...or should I say, was kind of just left deal with them, as there wasn't much advice given on the subject/if anything. I sometimes feel that the mental health element post SAH is worse than the physical aftermath.

You really do need to get yourself checked out with what you have listed above ... you may have already done that, but you haven't said, so it's hard to reply to anything specific on your list.

Take care xx

Hello again,

I have pills for depression and anxiety and to control my urine also on pills and patches for pain, also ones that numb the nerves, nothing else apart from stuff for constipation.

Headway will be able to help as the person running west kent is an ex neuro nurse.

I now have an appointment there next wednesday and neuro starts 30th and independant living assistant will be here soon for 3-6 weeks.

My doctor is being excellent.

thanks again

[Karl Gannon]

Hey Karl, thats good your getting help a neuropsychologist is good (been there done that) & Headway is great that'll really help...

Hi Louise,

I am a little worried about Headway as I seem very normal, I am not like extreamly brain damaged, also I worry that social services are treating me for more than I need but they are kind od pushing stuff, nothing bad, and maybe I am just not accepting how I am.

Thanks again for your reply.

[Winb143]

Karl,

You will and seem better since your first post Karl, so chin up, and look forward never back.

My Dad always said to me keep your bowels open, so you do the same.lol

Try and think of what you like e.g. hobbies e.t.c. and keep getting better each day.

Oh I remember when I first went out I held my bag so close to me and anyone who passed me was going to take it.

I felt so vulnerable in the early days.

So I was slightly paranoid about being left at first. but those feelings have gone, just like they will with you.

Good Luck

WinB143

[Louise]

Dont be worried about Headway they are a lovely lot of people, Im normal but we all have challenges Headway does not inply brain damage.maybe

And if they are treating you for more than you need then accept it for now.