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bad day...again!!


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Hi all, had a couple of not too bad days this week but last night and today are really bad again. I'm so dizzy today its terrible, headache, nausea, neck pain and weakness in arms and legs so of course I'm starting to panic. I start thinking what if its hydrocephalus or something. I won't get appt. at my gps today as they won't give you one if you don't phone at 8.30. I really hate all this :-( xx

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Jord,

It goes like this.. ups and downs, and swings and roundabouts. enough to make us dizzy lol

Take the good days and cherish them, okay today is a poo day so relax and whatever happens Don't Panic xx

Easier said than done, just relax !! when head is spinning

Think happy thoughts when possible xx

Be Well Soon xx Good luck xx

Love

WinB143 xx

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Like Win says, it's up one day and down the next. All of us have fell into the trap of thinking we are 'fixed' when we've had a good day, especially if there are a couple of them in a row. It makes the bad days harder to bear, but this all comes with time and experience. You will have good days again!

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Jord, Do you live in the US as that is the same rule for my Dr.

This is how it goes Jord My dear. I am sorry, all the years I had fibro b4 SAH & Stroke when I had a couple of good days I thought I was cured. Really 17 years I still held out hope I was over it and things were going to be diffferent now! The nice thing with SAH is when you start to have some good days I believe it is your body healing and you will begin to have more in the future- just do not go all crazy when you feel good ( says the girl with no nap yesterday!)

It will get better really, Maryb

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Hiya. To reassure you if you didn't have hydrocephalus at the time of SAH the I would guess it is pretty unlikely you would get it now.

If you had it at the time and had an EVD and its returning then you would have a sensation of increasing pressure that reaches such an intensity that you can't lower your head . Trust me you would know :roll:

As always though if you're worried get it checked, the hospitals will understand your concerns and should scan you.

I had lots of backwards steps , the headaches arent easy. I mean how are we supposed to know if something is normal recovery or to be checked out? The answer is we don't know and you have to start trusting your instincts again.

. This SAH journey is not easy. It's gonna hurt somedays. Sorry that we can't take your pain away. Wish we could :wink:. Keep resting as much as you can.

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Thank you ladies. No Mary I'm in the UK. I didn't have hydrocephalus Daff but have seen a few posts about it on here and thought you could get it a while after SAH, is more reassuring if its unlikely. I need to learn to stop going into a panic when I have worse days. The dizziness and headache today are awful xx

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I had hydrocephelus and was in cuckooland calling to my Mum and Dad and Family who had passed on.

I couldn't sit up straight I was awful. (nothing new there lol) I sang with my brother who is departed ahhhh

Dizziness doesn't mean hydro thingy as Daff also said. Just a part of what's happened to us xx

See how you feel tomorrow xx

Since having shunt fitted all is well, apart from walking, back hurts. I think it's catching as I got dizzy today, mad drivers in my family lol

Hope all goes well and hope panic has stopped.

Love

WinB143 xx xx

Edited by Winb143
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Hi Jord, so sorry to see you aren't feeling well today. It is a real roller coaster, especially in the first months. Like others have said I've often thought I was 'cured' when I've had a good day. It seems so unfair when we've felt good and like we are getting better and then the symptoms come back.

Many threads advise keeping a diary of our symptoms. I've done this for over a year. It's really helps to see the overall progress. It's difficult to understand that you are recovering when day to day different things pop up. But keeping a diary helps you to know that from week to week and month to month you are actually progressing.

Whenever you aren't sure about something don't hesitate to see your doctor. It will help to reassure you and ease the anxiety.

Sandi K. Xoxox

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As always thanks for your replies. Ended up phoning for advice and was sent to a&e where I was given s CT scan. My local hospital wanted to keep me in as the Dr said they don't know enough about Sah's and wanted to keep an eye on me. Luckily they got in touch with hope and spoke to a consultant who looked at my scan via computer and said I could go home. Hope these weird head feelings are not here to stay, its awful xx

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Jord,

I was a panicky as you are now. It will calm as you learn what is typical for you. Notice I didn't say normal because nothing about SAH after effects is normal. Things we're never 'Good' for me, just tolerable and then they wouldn't be and I'd freak! I however, am a neurophysiologist, so I knew that the doctors wouldn't have the answers I so desperately wanted. No you don't have hydrocephalus. Just like I was sure I had Thoracic Outlet Syndrome, but didn't. I even was scared out of my mind when I had a white bowel movement and it took for ever to find out from the doctor if she thought I needed to come in. No-once again. I learned to just call and ask if I needed to come in, because I never really did...I was just scared as all my body was doing strange things that I had never experienced before in my life.

Now I can honestly say I feel 'Good' and then not so. I still have really awful times, but they are not days anymore...just times. Jord, your days will become times as well. Just hang with us as they do.

~Kris

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