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Hello all,

Not been on for ages, back and forth to the doctors to try and sort out my dizzyness/spinning head.

I am walking into things and getting headaches now and sooooooooooooooo tired all the time x x which adds to my emotional state and I hate putting negative comments in here......

I am coming upto 5 years and just feel like i have come to a stand still x x I just feel rubbish all the time and have to force myself everyday x I get so angry with myself has i should be grateful I am alive..

I force myself to do things and then whoosh feeling in my head and I have a panic attack x x I carry on with what I am doing but finding I am not enjoying anything anymore......its just hard work x x

I am so grateful to be alive x x I have just lost a friend in a accident in Thailand and I know every second of life is precious x x I just feel I cant live the life I want because of how my head feels x x feeling dizzy and sick all the time and plays havoc with my vision (had eyes tested and they are ok) x x I have every med and none work so doc says its something I may need to live with CHEERS DOC

I am being ref to a sleep specialist to see if can help at all because I am always tired x x

I am sorry to go on AGAIN just feel alone and fed up 5 years nearly and still not been abroad because of my head spinning x x

Just looking for any advice ?

lots love

donna

xxxxxx

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Wow how terrible and for so long!

The main advice I might give you is to see a Vestibular specialist. They are a special type of physical therapist that specializes in vestibular disturbances which you are experiencing. I had to see one and I had all those issues you spoke of and now I can honestly say, I can live because they are mostly gone. When I was in the thick of it, it was hard to even imagine a life for myself. I too would try to push through things to no avail. Awful feelings!

Anyway, the specialist gave me several very strange exercises to do several times/day. I felt worse during/right after, but I started to notice a difference in my everyday life.

ideas: 1. In a hallway so you can brace yourself when you wobble, walk the length and turn head from right to left several times quickly. Then walk and move head up and down several times. Next, walk and gaze at a fixed point, while doing either/both of these things.

2. On the edge of a couch/sofa/bed, look over your right shoulder and turn your head as well so you're looking towards the wall, then lay down on your left side keeping your head looking over your shoulder so you end up looking strait up at the ceiling. Repeat on other side.

3. Triangle Yoga pose with head looking upward towards fingertips.

I have more if anyone would like just PM me.

~Kris

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Hi Donna, This might be a long shot, but have you been to an endocrinologist to have your hormone levels checked? I've recently learned that many SAH patients have pituitary and endocrine glands issues afterward. Hormones help regulate your blood pressure and low blood pressure can cause the symptoms your having. In my case, I had severe depression, fatigue, weight gain, etc. and through hormone testing discovered my adrenal glands weren't producing DHEA which is an important hormone. Within 2 weeks after taking a supplement, I had a complete turn around of my symptoms. Just a thought - might be something worth looking into.

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Hi Donna,

I've just seen this thread and the reply above. I am about to start hormone treatment with use of a diabetic type pen but filled with growth hormone instead of insulin. When my SAH was repaired, my pituitary gland was damaged and stopped producing growth hormone. I have since had it confirmed by two dynamic tests, one using glucagon and one using arginine. I think (but I'm not a doctor so don't quote me) that they gave me a controlled amount of these substances to try and kick start the gland but to no avail - a bit like trying to jump start a car with a flat battery, I suppose. Growth hormone helps you grow when you are a child but in adults it affects sleep patterns, muscle strength and stamina - I suffer chronic fatigue and as you say I feel rubbish most of the time. I have become accustomed to it but I refuse to accept it - it is very frustrating, I have to say. Have a look at the pituitary foundation website -it might be useful for you.

Hope this helps

Macca

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hi everyone keep your chin up donna , its been a year for me i also suffer with spinning (thats what i call it) mine is nearly controlled with betahistine and stemitil , but when its not its torture. I also have hydrocephalus awaiting a ct scan but dont think its gone as still have headaches and i vomit if i move my head too quick . i always thought the hydrocephalus was causing it but if youve got the same symptoms im not sure, Seing the neurologist in a week so im gonna mention it. my mood is very low too dont know how to improve it , take care x

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