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Just diaognosed :-(
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Hi guys

Well I am sure you have all been here but WOW what the hell is this weird thing ... confused!!!! I was diagnosed on Friday after an MRI as they thought I had had a brain hemorrage after suffering from a one off 'stabbing pain' in the head then disorientation, nausea, lethargy etc. I then had a really weird dizzy / disorientated spell again within a few days and then had the MRI.

I have never suffered with headaches before I am very fit .. I climbed Montblanc in June. I am 40 years old and from everything I read I will have had this all my life so why has it just started?

Can it / does it get worse? Can it or does it subside?

From the posts on here you guys seem to be suffering a lot more than me, mine now is just mild headache, pain in my neck and I feel nausea. Is this how you started?

Any response would be great as I don't know the date I will get to see my neuro surgeon yet.

Keep well, Lorraine xx
Posted on 10/27/11, 06:33 am
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Reply #1 - 10/27/11  1:22pm
" I'm sorry you have this diagnosis, but so happy you have found the resources available online.

This condition can be very different for everyone, so it is not a surprise that you have questions about the differences you have already noted. Symptoms appear at varying ages, sometimes seemingly random, other times due to trauma that made the existing condition worse. Car accidents are a big one.

Symptoms can get worse, get better, cycle, or stay the same. I hear that a lot of people have cycles, self included. The most important thing you can do is educate yourself. This condition is very poorly understood in the medical community and too many people are either disregarded or rushed into surgery. Take your time, and do what YOU feel is right. Doctors are only human, and having Chiari will teach you that like nothing else.

I wish you luck, and please continue to ask any questions. "
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Reply #2 - 10/27/11  1:52pm
" Hello -

Yes, it can get worse, but not always. Most of the time symptoms progress slowly, but that is not always the case. I notice with myself that some days the symptoms are worse and then other days they are a little better. Like any health condition, you have to take it day by day.

Yes, it can go away. The first neurosurgeon I spoke to said you could wake up in the morning and your symptoms could be gone or they could slowly decrease over time.

I agree with the previous post, and to neither rush into surgery nor wait until you get the green light if your symptoms become worse. You will know when it is time for surgery. "
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Reply #3 - 10/27/11  2:49pm
" THANK YOU just hearing it can get better makes me very happy! I am realistic and know I have to prepare for good and bad but at least now I know there's hope!

I have had 2 spinal ops for a prolapsed disk and I never knew the cause for these either - there was no accident or trauma it just happened. I wonder if the two things may be connected? That said as you can imagine I am in no rush for surgery I don't want to have to put my life on hold if at all possible so will do everything to avoid if I can.

The only advice I have at this stage is 'go be normal' I can run, swim etc but no heaving lifting ... not sure what would qualify as heavy any ideas guys?

Thank you again what a relief to find you not one person I have spoke to including 4 nurses have even heard of it!

ps my new name is Lorraine Super brain ;-) "
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Reply #4 - 10/27/11  2:56pm
" Ha, Super brain. When I got diagnosed I told everyone I'm so smart my brain doesn't fit in my head anymore.

Just wanted to mention...try to be normal, but if it hurts...don't do it. If you go for a swim today, and your dizzy as can be tomorrow, don't go swimming or change how you swim. This is not a condition in which it is OK to push through the pain.

The reason for the no lift rule is because you should not place any strain on your head & neck. So if you are lifting enough that you strain, don't lift that much. Obviously someone with more muscle can lift more without strain. "
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Reply #5 - 10/27/11  9:50pm
" So sorry you are here under the current circumstances. The first time I hear Chiari, it took weeks to absorb all connected with this disease.

I would not lift over 10 lbs to be safe, heavy lifting can aggrevate symptoms. Stay hydrated, it can help the headaches. Be careful physically, to much activity can aggrevate symptoms. My symptoms came about due to a roller coaster ride, just trying to have some fun. Early on docs thought I was hemorraging also, false. Mine started with sudden severe headaches, at first doc thought it was a tumor. Was not picked up on the MRI ordered.

Chiari affects the cerebellum which is responsible for balance, it can get worse. Subside? I don't think so. My symptoms went into a short remission but came back. Were not relieved until surgery, the only stabilization for CM.

Hope your NS visit is soon. Keep asking, we are all here to help "
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Reply #6 - 10/28/11  2:48pm
" Hi all ok more questions if that's ok?

I have had pain in my neck and headache a lot this week which just seems so weird as I didn't have them before my 'episode'. Do I carry on working, exercising, socialising or should I lay down and rest??

I am also really lethargic which is so unlike me I normally have TONS of energy but not sure if this is down to the stress of this last week or the NM?

What I am struggling most to understand is if we are born with this why wasn't I feeling all these things before? Surely something has changed??

Thanks in advance, Lorraine xx "
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Reply #7 - 10/28/11  5:58pm
" You can still carry on, but do not push it too much.

Normally, symptoms are brought about by some trauma to the head. Have you had a fall, slight accident, hit your head on something. Even the smallest of things can cause the symptoms. Have you felt sick for a few days? "
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Reply #8 - 10/28/11  6:27pm
" My symptoms didn't start until 21. No accidents, no falls, nothing. I was sitting at my desk, got dizzy, and it hasn't stopped for 2 years. I hear about a number of people whose symptoms start due to head trauma, but sooooo many more whose symptoms just plain start! I wish I knew why.

I had to change a lot of things about my lifestyle to avoid the chronic neck & head pain. At first it was hard to see what was triggering it, so I kept a journal. That way I could see...I took the dog for a long walk on Wednesday and my headache was 8/10 pain on Thursday. Small things matter too...for example, bending over too many times (which I manage to do a lot of while cleaning) will result in me spending the rest of the day in bed. It gets easier to figure out as you go.

Never stop socializing!! We need people around us to take our minds off the pain. Helps if they are especially entertaining people :) "
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Reply #9 - 10/28/11  6:29pm
" One other thing - not too many meds help with the headaches, but caffeine can take the edge off. Have an extra cup of coffee! Just don't go too crazy. "
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Reply #10 - 11/08/11  3:09am
" Hi super brain since finding out in august I have a 9mm chiari,after the panic feeling, then gaining reassurance from friends on this site, I have laughed away my chiari to those I have told, blaming the chiari on my phd studies, brain has got too big!
I have been keeping a list of symptoms and queries ready to pose to the neurosurgeon consultant I am seeing today for 20 mins.

Like you I am a walker, had walked to everest base camp last year, and want to have the confidence to plan my next trip to Antarctica without causing health issues.

Best wishes x "

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