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Hi Need support from all! Very scared....


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Hi there

I am now 10 days out of hospital after having a brain bleed which resulted in a clot which they are hoping will absorb itself.

I had an angiogram and MRI during my two week stay in hospital, as well as having an EVD draining fluid for 6 days.

The consultant could not find an aneurysm on the first scan and I have to go back for another MRI and angiogram in 3 weeks - I have just turned 34 three days ago.

I am terrified.

I have a one year old and a four year old and am finding I have good days and bad days but the sickness is getting unbearable! I am on Cyclizine but if I dont take it I can be so sick. Is this normal three weeks post op??

Am very scared and worried. Why has this happened!

Thanks Jo

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Aw Jo, bless you. Have you got family support, definately accept all the help with the kids that you can, they will be fine so concentrate on looking after you and they will benefit from that. Just get lots of cuddles from them as that's good therapy.

The docs will thoroughly investigate I am sure and there are plenty on here where no anneurism was found

Keep taking the cyclazine tabs as the sickness is common early on. I found I needed to eat little and often all the time otherwise it just got worse, when I couldn't face anything I would have one of those build up milkshakes, god awful things but I seemed to keep them down...bit like a hangover cure if you know what I mean.

My hydrocephalus nurse team explained the sickness can often be caused by the effect of having lowered pressure of the cerebral spinal fluid and blood in it. Think how rubbish we feel after drinking too much....

I had an EVD too, remember that's going to take a bit of healing from that surgery regardless of the dispersing of the blood so be gentle with yourself, no rushing at this one, it's a slow and steady pace with lots of sleeping and water drinking.

You're not alone. It's ok to be scared but we will try and make sure it doesn't feel too awful as we all know how it feels.

Ask anything that worries u, someone will always try and help. I was 39 when I had mine last year, kids were older than yours but there was plenty of reassurance to be found here when I needed it. One last thing, if you are at all worried or something feels wrong then phone your team, I am hoping they gave you a contact number. It's also good idea to speak and make contact with your GP if you haven't already, it helps make you feel less alone

Hope you get a good night sleep petal

Edited by Daffodil
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Jo,

I hope you have family and friends helping you out. Now is a time that you need them to step up and take care of you so you can rest and heal. It is not a time to push too hard or feel bad for being sick. It is what it is and somehow you will find a way to help that healing process. It is no ones fault and nothing you can do but give yourself time to heal. It heals on it's own time table. We cannot rush it but we can help it by resting and drinking our water.

I wish I could say more but you must take everyone’s help and not feel bad about it. It takes a toll on your healing process to worry as well, do not worry about not having the energy for your babies right now because the most important thing is you taking care of yourself.

It is so scary isn’t it when they don't tell you much. I think we should all band together and call their offices daily asking questions until they get they need to tell us more and reassure us better.

Maryb

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Hi Jo, welcome to BTG. I hope that now you have found this site, it will give you some reassurance that you are a)not alone in this and B) that your symptoms and feelings are quite common following a bleed on the brain.

It is so much more difficult trying to recover and look after yourself when you have the needs of children to consider too. So, if at all possible, any help/support you can muster is certainly recommended.

An appointment with your gp would also be a good idea, if you haven't already done so. Explain your fears and worries with him/her. I remember making an appointment with mine a week after coming out of hospital just because I was getting in a muddle with all the tablets I'd been given!

I doubt you had the best of birthdays this year, but on a positive side, they always say with recovery from any injury, the younger you are, the speedier the body will repair.

I remember all the fears you are experiencing all too well, but it does and will improve over time, although sometimes it can be a little too slowly for our liking.

With best wishes,

Sarah

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Hi Jo,

I had my NASAH (non aneurysmal subarachnoid hemorrhage) in Apr, two days after my birthday. I understand your worry and fear. The first couple of months can be difficult. I have an 8 yr old and it is hard but they will get through this with you. I had three angiograms; all negative. Drs told me they do not why this happens. May be a weakened superficial artery that ruptured and obliterated itself. I was told I was probably born with it and most likely not happen again.

Rest as much as you can and accept help from whomever is there. Don't pick up anything right now and think about you and your recovery. Takes lots of time.

Iola

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Hi Jo, welcome glad you found us.

Sarah's right a chat with your GP good idea, if you've not thought of that then get an appointment.

Yes trying to recover yourself but with a young family it must be difficult.

Take care

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You are not alone Jo. I am sure at some point, each person on this site asked "why has this happened?". Like "i" said, don't lift anything right now. You will need to bring the diaper down to the floor if you are going to change the one year old. Been there. Stay strong, stay positive.

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It is scary! It is very scary. The good news is, according to my neurologist, there is no more chance of you having it again since it's non-aneurismal, than a regular person. Sometimes they just happen and we don't know why. But one thing that is good about it having happened is that they have a great shot of your brain and know just what is and isn't going on in there. i was encouraged by having a "clean" angiogram.

The next few months will be very interesting. You will have a lot of feelings that will be disconcerting. Some will be emotional and some will be physical. Just come on here and say "Hey! My head feels like someone is pouring water over my brain" and within moments people will pop on and say "Yes, that's normal." Oh and for the next few months, "normal" is nothing like your regular normal.

I second and third getting help with the kids. Do NOT be afraid to ask for accept help. One of the challenges of having had a brain injury, and this IS a brain injury, is that people can't see it. They will see you and be relieved that you look "fine" and sometimes you will feel fine, and ten minutes later you want will to crawl under the bed and sleep for days. It will be very important that you do NOT try to push through it. It won't help you get past it. Brain recovery is very very energy consuming. You have to make sure your loved ones know that and that they are on board. There is a carers board on here, and it might not be a bad idea for them to look through the board.

I think most of us wish we knew what we were in for when it happened. I was in denial and went back to work way too early (I'm a teacher and run a small business as a Wellness and Running Coach). I had no idea how serious it was. Not, "I might die at any minute" serious, but "This is going to take a long time to recover from" serious.

Just be very careful about over-stimulation...grocery shopping, driving, even television can just be way too much for your brain to handle. I didn't drive for months because it was just way too overwhelming to keep track of so many things. I used my iPhone for EVERYTHING....seriously (Siri-ously) I used it to remind me of everything.

You will get through this and it won't be as easy as you hope or as bad as your fear.

Tory (18 months post SAH and back to running marathons)

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Hi Jo, and welcome to BTG.

Lots of good advice already provided by others in this thread.

Patience, remaining calm and above all else, taking things slowly will help you to get through the next few weeks/months. It is very scary and you may find your confidence has taken a severe blow, I was terrified at being left in the house on my own for a long time after my bleed.

Call on the support of friends and family, do not overdo it and take things one step at a time.

Take care,

Wem

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Hang in there. You can handle it. Your recovery may be long or short, but it will progress forward.

I had no aneurysm either. I remember looking at my scans and wondering...and admiring my arteries that were in perfect condition :) The why is unknown.

Accept all the help offered to you from family and friends. Look for new ways to do things to minimize your fatigue and ill feelings. It's time to take care of yourself now. This is hard, I know...but it is needed.

Good luck with the tests!

~Kris

Edited by Skippy
not qualified for medical statement
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Hi Jo,

I had a SAH but I am getting better each day and so will you.

Keep strong and think positive thoughts if possible xx

It is natural to be scared. My husband was told I'd never walk again and he was to have me put in home !! phew thank goodness he never took any notice of so called occupational therapists and physio team.

Since I have been home I have come on leaps and bounds.

If I can get better so can you xx now cheer up and my answer to any of life's ills is to laugh and sing.

Good luck to you Jo

WinB143 xx

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Hi,

You really need to go and get yourself checked out/talk with your GP. I believe that there can be problems with the ears that might cause you to have tinnitus and nausea/sickness ... so the two may be linked....if what you have been prescribed isn't working for you, then never feel worried about questioning it. I also experience tinnitus/change of frequency in ears, but no sickness. xxx

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One thing I have learned in my life is that just because the Dr. prescibed you something you should not settle if it is not the answer. There are other treatments and you just need to speak up until they can help you with a solution. Good Luck Maryb

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Feelings of sea sickness for 1-2months.

No tinnitus, but had perfect pitch for a bit. That was really weird. I now understand why no one with perfect pitch would play piano because you can actually hear the tone difference in the three strings the little mallet hits. Even a Glen Gould recording was awful in the low registers for me to listen to.

I still get a sea sick feeling if I scroll too much on the computer. I couldn't use one for the longest time. When I finally could, I found BTG right away and it's been so good here to post any weird symptom and you get responses right away that showed me, at least that my symptoms weren't all that atypical.

Hope your feelings let up soon.

~Kris

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