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Brain haemorrhage problems years later


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Hi,

I have never wrote about myself before but I reaLy do need some advice. I had a haemorrhage in 1992, told I was ever going to walk again, paralysed down right side.nearly 20 years on I am walking & lead a good life. I have a weakness on right side of body, but can walk. I have a balance problem, double vision, nystagmus & the memory problems etc most tend to have. I was recently diagnosed with osteopenia. Apparantly because of the steroids I had to take after my illness, this caused this. I was also diagnosed several ears ago with ME. I do have some medication to take several times a day.

My question is, I was getting on ok, but over the last year I have really gone down hill. My legs are really ad, ache a lot and I get bad pain in kness. But this is nothing to do with the osteopenia. I also am getting very very tired, have no energy. I have also suffered with feelings, well the lack of them. Is it possible to have new problems years after a injury? I'm 34 and really ate spending most of the day resting, I do one thing and that's me gone for the day. I can't remember what it was like to go out in the evening. I recently went to a funeral and spent two days after recovering.

Please can someone help? My B vitamin level is fine, I take some supplements to help.

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Hiya Linsey,

I don't have any help or advice I am afraid, but i am very sorry you are unwell. Do you have contact with a neurologist? What is your GP's opinion on the changes that are happening to you?

This is a brilliant site and you will find lots of support here, perhaps someone more knowledgeable will come along shortly.

Dawn x

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I agree with Dawn, Lynsey,......someone will pick this up and be able to help xx I hope xx....main thing is to keep positive, harder to do.

easy to say....

Keep your chin up and someone other than me will be able to help or advise... ...

Like you, I was told I would never walk (Well My Family where told).......I am at limping stage at moment....but getting there..knee hurts...but never give up xx

Good luck

WinB143 xx

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Hi thanks for quick reply. I am seeing my neurologist at the end of the month, I'll talk to her then, but after dealing with so many doctors over the years I know they will say 'it's usual' as they can't really answer, every case is different and they are only really trained generally. It took a lot to write on here but I know the best people to ask are the ones that have been through it. My confusion is that I never had these pains and discomfort years ago, I don't know why I have it now, and why I s'more tired now then I was years ago, maybe I should accept I am 'special' as my mum says hehehehe. I always keep smiling. I believe if you accept that you won't get better, you won't. I never give up and always think, I have make up to cover my bruises when I stumble lol x thanks again

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That's the spirit Lynsey ...dont let it beat you.....keep on at them...lol become a pest if need be ..I am lol

We got over the brain pop ..so we can get whatever life puts our way...go get em and good luck for end of month xx

Love

WinB143 xx

Edited by Winb143
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Hello Lynsey,

Welcome to the BTG family!

I'm sorry to hear you're having such a bad time of things lately.

I can't speak from personal experience, I'm not far off 2yrs since my world got rocked and my brain got re arranged.

I was wondering could these recent issues be due to the ME and other health issues? Has your gp done full blood counts etc?

I'm sure others will be along soon with more experienced advice.

Our lovely Mary has other health issues so I'm sure she'll be able to help.

Your positive attitude will be of great strength to you, remember we are all here to give support and advice, to share laughter and get through the tears.

And honey we're all 'special' !!!

Good luck for your appointment at the end of the month, write down all your questions.

Take care and keep smiling,

SarahLou Xx

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Hi Lindsey, a warm welcome to BTG. My, you were young when you had your sah 15ish? I'm so sorry to hear you are suffering with these issues now. Hopefully your neurologist can throw some light on it for you when you see him.

I'm not sure that there are too many regular members who had their sah so long ago, so maybe won't be able to give advice from experience, but hopefully just being amongst other sah survivors will help you through this with their support and friendship. I wish you well and hope things improve for you soon- it certainly sounds like you have a positive attitude which is good.

Take care,

Sarah

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Hello Lynsey, I am so sorry to hear how you are feeling. I have fibromylgsia, along with a host of secondary autoimmunie issues with it. I am not sure exactly about what ME is as it seems to be an British term for something like Chronic Fatigue? I have had a great deal of luck with anti depressants and seratonin uptake inhibitors. I do have to switch them every few years. I am currently on Cymbalta. I have had fibro for about 16 years and the exhaustion is here today as I have spent the day in bed but I had a really big week. But I am so much better on it. I think everyone with any brain injury should be on some sort of these meds. because of the nature of a brain illness or injury - the disruption of blow flow and the similar affects of fatigue, pain, muscle weakness, numbness, tiredness, depression etc...... I do not feel depressed but I have had a lack of emotion for some time. I do get some happiness but never giddy or delight and I never cry or such. I am so even tempered now. Rather dull.

Please take care and I am glad you are seeing your neurologist later this month.

Maryb

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hi lynsey

im sorry to hear that you are having problems reading your post i would be wanting to see the gp and have some blood tests just to rule out any problems if they find anything then they can start treatment before you see the dr at the hospital but it seems like the ME could have kicked in the fact you have lack of feeling it could be more for the dr at the hospital to sort out although the fatigue could be down to the sah it could also be down to being run down blood wise hence the suggestion to see the gp there is an old saying if you dont ask you dont get please see your gp before the hospital appt that way you should be more prepared good luck

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I think it might be an ME relapse that maybe I had awhile ago but as normal I ignored symptoms and have carried on normally and think my body has thought 'well you ignored me gently telling you, try this then' and stopped working! But I know it sounds weird maybe, but I love my life. I was 15 when San happened,& I've been left with problems, have Carers but my life's great. I have a brilliant family and man of 10 years, great friends and even though Ive been signed off work at the moment I help at my local hospice, teach them how to make jewellery & cards. I started making them as a hobby and people buy them as gifts and I've raised nearly £200. That's why I don't want to really speak to doctors as I was in anti depressants for years and I'm worried they will again, it took me ages to get off them and I am not depressed, just have no up and go,even though I know I have loads to do. But I do thank you all for your kind comments , it's great to have apace we can chat openly, people not only care, they understand x

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Hi Mary,

MME stands for myalgic encephalomyelitis. Myalgic means muscle aches or pains. Encephalomyelitis means inflammation of the brain and spinal cord. It's often called chronic fatigue syndrome even though it's not just tiredness, I think a lot of people think they have it as get excessive tiredness,but you get lads of other symptoms, which is what I had first. It was 3 years before diagnosed as doctors and even I thought it was to do with my sah, it was another person with Me that recognised signs. My friend had fibromylgsia and I do understand how hard it can be,my thoughts are with u x

e is

Hello Lynsey, I am so sorry to hear how you are feeling. I have fibromylgsia, along with a host of secondary autoimmunie issues with it. I am not sure exactly about what ME is as it seems to be an British term for something like Chronic Fatigue? I have had a great deal of luck with anti depressants and seratonin uptake inhibitors. I do have to switch them every few years. I am currently on Cymbalta. I have had fibro for about 16 years and the exhaustion is here today as I have spent the day in bed but I had a really big week. But I am so much better on it. I think everyone with any brain injury should be on some sort of these meds. because of the nature of a brain illness or injury - the disruption of blow flow and the similar affects of fatigue, pain, muscle weakness, numbness, tiredness, depression etc...... I do not feel depressed but I have had a lack of emotion for some time. I do get some happiness but never giddy or delight and I never cry or such. I am so even tempered now. Rather dull.

Please take care and I am glad you are seeing your neurologist later this month.

Maryb

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linsey

it is some time since you were diagnoised medical treatment has hopefully changed and the understanding of ME has moved on i know the drs are more than willing to presrcribe anti depressents where they are not approprate but there are drs who specialise in ME it would be worth doing a sweep of the net for that special dr and ask to be reffered by your gp chin up and take care

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Sorry to hear about your problems, try to stay positive. I suffer with fatigue and those that know me on here will know that I keep going on about the pituitary gland. They're probably fed up of me by now! look up 'Pituitary Gland Foundation' on the internet. There's some great information in there. I know its a long time since your treatment but it's a possibility. Gosh, the body is a complicated thing isn't it? Your condition sounds a lot more complicated than mine but constant fatigue is a nightmare! I know you don't like doctors, but your experience can be coloured by what you have encountered. Mine have been absolutely superb. Any chance of speaking to another? It really will be worth it and not as bad as you think. Before you go, write all your symptoms and effects down so you are not tongue ties or say the wrong thing - take it with you and show the doctor - keep a diary of how you are feeling. You're not alone Lynsey - have a rant on her any time you like.

Good luck and let us know how you get on

Best wishes

Macca

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