Brain hemorage.

[poppyeez1970]

On the 27the Aug I suffered a brain hemorage cause by an anurisim. I am feeling very frustrated at my recovery. I seem to be doing really well but now feeling very depressed. Is this normal. Feel like every time I have a bad headache this is going to happen again. I am so very worried.

[angelite]

Hi there,poppyeez,So sorry to hear of your bad luck.I was nervous of catching a virus after my illness(suspected Encephalitis),thinking that my immune system could malfunction again.With time and having 'normal' reactions to viruses since then I am less inclined to worry.From what I have learned from others posts depression is a common after effect of brain injury.If your injury was only this August then you are very early in recovery-these things can take time-I will be 2 yrs from onset in January and still have some problems yet I was not so ill that I went into coma like many who have had this.It is very much dependant on the type,severity and location of the injuryand the healing rate of the individual.There are many good people on here who may have had a similar experience to yours and could offer more appropriate advice than I.How do your symptoms affect you? x

[poppyeez1970 in reply to angelite]

Thanks for the reply. I suffered most days with headaches. They can range from jyst a slight ache to a severe migrane. At first my eyesight was bad with double vision. My eyesight has improved. Before my hemorage I loved to read but now find it very difficult to consentrate for any length of time. TV is a bit of a issue cos I cannot consentrate on it. Every time I go to the doctors he just keeps telling me it takes time but not how long it will take. I know there is no correct answer but feel as thou I am wasting his time. Being unable to do things I done before the illness is getting to me. The worst thing is the fear of it happening again. Just feeling really down about it all and just want to go back to how things where. X

[angelite in reply to poppyeez1970]

I can understand wanting to go back in time-most of us would not choose our illnesses but part of recovery is coming to terms with how you are at present.It is fantastic news that your eyes have improved.Concentration is a common problem after BI-perhaps music or audio books would be better for now?Have you found some pain relief for the headaches?

I assume you have had brain scans-from what I have read they are excellent at detecting aneurisms so any others should show and you would be informed.

Things you can do for yourself are to eat well,take supplements if you feel it may help(omega 3 and multivitamins are popular ones),get plenty of rest(neurons repair while we sleep) and be patient with yourself ! There will be improvement,maybe not at the speed you would like but any small difference(like your vision) is cause for celebration and should boost your confidence.You are doing amazin' well for early recovery! x

[Kirk5w7 in reply to angelite]

Hi Angelite,

I had viral encephalitis which put me in a coma and nearly killed me.

I was expected to be in a permanent vegetative state, but how wrong they were.

I too fear viruses but it is very rare to be that unlucky twice, most viruses are too big to cross the blood/ brain barrier, they never found which one mine was, but I've been told I'll be susceptible to picking up anything going round so I avoid people coughing and sneezing and carry hand sanitizer everywhere I go!!!

I have my problems, visual as well as extreme fatigue but it's nearly 3 years now and I've learned to live with and accommodate the limitations. I'm still seeing improvements so not giving up.

There are only a handful of us that I know of on this site, but are you a member of the Encephalitis Society, they do residential weekends and the like, I'm a bit old for that now, 62, but great for the younger ones.

Take care xxxJanet

[angelite in reply to Kirk5w7]

Thanks for your info,Janet.I am rather afraid that I may be considered an 'imposter' as I did not get an official diagnosis and was finally put down as FND a year later!(Back story on FND website here)Yet I identify my illness/recovery/ongoing problems with ABI.Sadly my GP seems to not want to get involved as the circumstances of my illness were treated a little less than professionally in hospital! x

[Kirk5w7 in reply to angelite]

I'm so sorry for that, but a viral illness can cause all sorts of problems, so if you identify with some of the symptoms I'm sure it's true.

Unfortunately the medical profession like to put things in neat boxes and of course they don't always fit.

I'm no longer monitored in any way, but I have some profound issues that I deal with daily which I intend to bring to my GP's attention in the New Year I'm not going away although I think they'd like me to. My life has changed dramatically and i'm not ready to roll over!

If it wasn't for my dogged determination they'd have to deal with a lot more.

I was the one that insisted my sight was an issue in spite of being told it was all ok, in fact it isn't and I'm now monitored by the hospital but they've said there's nothing that can be done.

So the support is here for you, I am sure you are not an imposter, only 20percent of severe encephalitis sufferers survive, so a lot of GPs never see it, and I'm sure that there are many who have the illness to a much lesser degree and are left with the consequences.

Take care Janet x

[angelite in reply to Kirk5w7]

Thanks for your kind words of support-I am 99.9% certain of what I have had and of the consequences I am dealing with now-I just do not know the causative agent.Shame the full recommended tests were not done during my acute phase but I understand the pressures on the NHS budget and the need for priority.Still,to have 5 months of elevated white cell counts and two months of swollen lymph nodes disregarded alongside textbook brain symptoms seems a little unscientific to me! x

[Nutkin33]

It's so normal! I had my accident almost two years ago, and I was used to injuries taking only six weeks to heal! I still get very depressed! I have been told by my neurologist that I could take five to ten years! It's most frustrating. Good luck with yours!

[jo-2014]

hy I had a brain heamorage caused by a aneurysm a year ago just had the first aniversry of it on boxing. everything your feeling is the same as I felt and do still feel. it is very frustrating the best thing you can do is keep coming on here there lovely, caring and very helpful. I too loved to read but found I couldn't concentrate long and that when I did it gave me really bad headackes so I got some audio books that you listen too on the computer. there brilliant and iv found they don't make my headacke any worse. give them a try. Jo

[melmarsh]

Hi

I had a brain haemorrhage in May and still have the same fears now.

I was told by my neurosurgeon it can take upto two years so up are very early in the recovery stage. Listen yo your body if it wants to sleep then sleep. There are pain blockers talk to help with the pains (I'm still on them) try and speak to the ward if you are unsure. Sadly my gp wasn't the best as he admitted he didn't know much about brain!

Being scared is normal as I said I still am ... Every pain in my ear .. Neck .. Head but I'm told in time that will ease.

Good luck x

[lindyloub]

I had a deep clot in my brain which was operated on in 2008. I recall the deep piecing headaches like a nail being hammered into your head unfortunately I am now left-side paralyzed 2 years later unfortunately I had a granmal Epileptic seizure 3 days in intensive care it did cause a bleed but I was told they would treat it conversely as gradually it would dissolve into the brain tissue I had only just received my driving licence back surrendered it back to DVLA then waited until I was seizure free for months before re-applying my epilepsy is controlled by medication not had any have you spoken to your own GP for reassurance if taking over the counter headache pills are not helping your Doctor could give you a prescription for something stronger at the same time let the doctor know how depressed & frustrated your feeling being in pain its no wonder your feel down take each day as it comes most importantly at the end of the day think of all the positives you have done even if its just writing a letter to a friend re-arranging your furniture I recommend

that you should go along to your local Headway group making new friends all of which have traveled the rocky road on the way to recovery the group I Volunteer with have quizzes play countdown or crossword puzzles its informal we normally find something to really laugh about the group I go to starts at 10.am then you have lunch which is a cooked meal at 2pm which is my shift for voluntary there are more puzzles or games dominoes its basically exercise for the Brain I exercise my body at the gym but my Brain exercise with headway. I'm also primary carer for my husband who has dementia going out for 2 hours at Headway makes me feel so much better to get out of the home in the New Year I'm planning to go along to Carers Groups pick up some tips for Dementia Caring he also has heart failure Vascular disease don't think I have much time to worry I'm being tested for COPD as I'm becoming very breathless so I'm on a learning process of using the vaporizers correctly I have 3 in total poppy life goes on & words that I say to myself is life is revolving all the time nothing lasts forever be it good or bad so if I'm going through a tough time I remind myself its not forever plus when one door closes another opens.

I hope my reply might help you stop & think become positive

[lindyloub]

I had a deep clot in my brain which was operated on in 2008. I recall the deep piecing headaches like a nail being hammered into your head unfortunately I am now left-side paralyzed 2 years later unfortunately I had a granmal Epileptic seizure 3 days in intensive care it did cause a bleed but I was told they would treat it conversely as gradually it would dissolve into the brain tissue I had only just received my driving licence back surrendered it back to DVLA then waited until I was seizure free for months before re-applying my epilepsy is controlled by medication not had any have you spoken to your own GP for reassurance if taking over the counter headache pills are not helping your Doctor could give you a prescription for something stronger at the same time let the doctor know how depressed & frustrated your feeling being in pain its no wonder your feel down take each day as it comes most importantly at the end of the day think of all the positives you have done even if its just writing a letter to a friend re-arranging your furniture I recommend

that you should go along to your local Headway group making new friends all of which have traveled the rocky road on the way to recovery the group I Volunteer with have quizzes play countdown or crossword puzzles its informal we normally find something to really laugh about the group I go to starts at 10.am then you have lunch which is a cooked meal at 2pm which is my shift for voluntary there are more puzzles or games dominoes its basically exercise for the Brain I exercise my body at the gym but my Brain exercise with headway. I'm also primary carer for my husband who has dementia going out for 2 hours at Headway makes me feel so much better to get out of the home in the New Year I'm planning to go along to Carers Groups pick up some tips for Dementia Caring he also has heart failure Vascular disease don't think I have much time to worry I'm being tested for COPD as I'm becoming very breathless so I'm on a learning process of using the vaporizers correctly I have 3 in total poppy life goes on & words that I say to myself is life is revolving all the time nothing lasts forever be it good or bad so if I'm going through a tough time I remind myself its not forever plus when one door closes another opens.

I hope my reply might help you stop & think become positive

[Kirk5w7]

2 years seems to be a common timescale for the experts to quote, when in fact they don't really know, I'm nearing 3 years and know I will never get back to the original me, but there are constant improvements, albeit small ones.

Acceptance and patience are what is needed and perseverance, I know most of the pathways are still there in my brain it's finding new ways of joining them up, so practice and dogged determination are needed to.

This year I'm determined to get walking faster, I can't run but who knows I may get there, my GP is right behind me, he's learning with me.

So be kind to yourself, rest when necessary it's amazing what your brain can do given the right envieonment xxx

Janet

[Jinty1]

I had a similar thing 3 years ago and am still finding I can do things I couldn't do before. Don't worry, it takes a very long time but you do continue to make improvements. I still have times when I get stressed by being overwhelmed, but it is happening less and less. Keep your chin up, put a smile on your face and get in touch with the organisation Headway. They were a fantastic help for me and give you lots of practical help. As importantly, they give your partner support too. I don't know where you are, but do a search on the internet and you will find your local branch. You speak to people who have been through similar things. Good luck in your recovery!

[spideyman]

Im very doubtful it will happen again cos technology is more advanced these days.

I had 3 back in 1987 and in Oct 2013 i collapsed and phoned my Mum etc etc.

Its all in my diary but it was due to high blood pressure.

Get on with your life and dont worry at what might never happen

[Hidden]

Hi Poppy

Sorry to hear of your experience and understandable anxiety.

7 months ago I had a ruptured aneurysm and like you the fear of it happening again was awful. I used to wake in the night with a bad headache and feeling sick with fear.

This may sound like very depressing advice but it worked for me. One of my biggest issues was being out of control, the timing of the aneurysm, not being able to pack a bag, ring the family, sort out the cat etc!

So I decided to tie up all the loose ends, I have written a will, left letters for my family, arranged a home for the cat and got all the paperwork in an organised place where the family will be able to find it and told them where I have hidden a key outside so they can get in.

It was very distressing, esp writing the goodbye letters. But it helped my anxiety, I no longer worry about what will happen to everyone else if I die, I have taken control of as much as I can and it makes me feel better. Obviously I still don't want to die, but at least I am organised if the worst happens.

Do talk to people about how you are feeling Poppy. Take care.

[Hidden]

In 2002 I had orbital celulitus that caused a major clot in my brain.. Hubby told to prepare himself. Well I'm still here! But... It took me probably 3/4 years to get over the fear of headache = clot. Even now.. When I get a bad one the fear returns slightly. I also suffered blackouts, 3/4 a day. These have been matched to stress, not even major stress.. Having to make a quick decision set it off! Had to stop work totally, two years ago, and now.. 3/4 blackouts a YEAR!!! Woop Woop!

Please remember, you've had a major illness, and it will take time to recover. But, with good pain meds, and supportive family/friends it WILL get easier.

[poppyeez1970]

Firstly would just like to thank you all for your responses. Feeling like u am not on my own is a major relief. My family and friends have been fantastic. I am still waiting on my next scans which will be a few months yet. My main frustration is not being able to do my job and feeling so bored. Being a mum to 4 boys and the fear of know what my husband and sons went through scares me. I know I am lucky to be alive today and keep trying to think positive but also have my fears. Once again thankyou all for your responses. X

[cat3]

Poppy, I'm not sure you realise what a very short time, in terms of recovery, 4 months is.

Your brain is still healing after a major trauma and surgery so don't be surprised when you experience headaches/dizziness/exhaustion etc.........

It's common for people to feel apprehensive after a haemorrhage. It's so unexpected and frightening, especially for loved ones, so there's usually a degree of Post Traumatic Shock we have to get through before we can start to feel 'normal' again.

I promise you, things will get easier with the passage of more time and you will regain some confidence and adjust to some of the after-effects of the injury, like headaches, concentration problems & memory issues. All these issues most of us have learned to manage, many of which we now often laugh about here together.

I'm sure you will too Poppy, in time.

Be kind & patient with yourself. Cat xx

[lindyloub in reply to cat3]

Cat I totally agree 4 months isn't long enough from what I can remember the first months much progress will be made but it doesn't necessarily stop there we have many brain cells not used its possible to use one remember more importantly if you don't use it you will lose it. I came out of my Brain Operation having paralysis on the left side it might have been caused by an epileptic fit

whatever the reason just want to share with the group its possible for your brain to be trained firstly consciously. I purposely held out my paralyzed arm to take something being given to me previously I would twist my body around so that my good arm took what was offered now automatically my paralyzed arm now connect to the brain will without thinking that brain cell is now working my arm is doing a little bit more day by day this is now 7 years so from this I hope the group will realize that with a bit of effort the recovery period is endless.

I still need to conquer shoe laces or clothes inside out to be turned to the opposite so to wear yes its frustrating but thee are no limitations that can't be overcome eventually time patience & some effort positive thinking all help.

I hope that my contribution towards others searching for hope will give some comfort

[Ikpe35]

Hi Poppy,

You'll be fine- just take one day at a time. You're alive girl! It's normal to feel depressed at times but please try to feel happy your alive, you've got your family with you.

It could be frustrating but hold on ok. Do things you can cope with- do not stress or overburden your body because it causes extreme pain later on. I don't know if you get them but I do and trust me- I can be an irritant. My right side burns and I do not let my children or hubby touch me. It's frustrating for them. I have to lie down or sit quietly. I've learnt to manage my pain now. It's been 3years now.

Again, if you can create some time-do something you like to but in line with your recovery process just to keep you busy when you can.

E-hugs.

[poppyeez1970 in reply to Ikpe35]

Thankyou x