My Introduction (1st post)

[Guest guest]

Over draining or something else going on?

As you can see by my user name, I was shunted for the 1st time at age

50 in 2001. Ever since I have always had problems being totally

upright for very long. Not only does the pressure in my head feel

bad, but it feels like it radiates into my body, putting strain on my

heart & breathing. My throat seems to tighten. The base of my head

hurts & /or the top and the next step is my whole head hurts. I feel

like I have palpitations. I also usually have a slow heart rate at

rest, between 47 & 61. It can get rapid just by getting up, dressed

and walking to the main floor to about 125 beats per minute! (This

has only happened a few times recently) I know I'm out of shape due

to living with these restrictions for 5 1/2 years now. I have

headaches every day which usually go away if I lie down. But this

cycle goes on all day long - up, then down, up, then down.

Today I was up early,5:30am, preparing for some electricians to do

work at our house. I was struggling to tidy a little. But then (after

2 brief lie downs) I was up for 4 hours steady as I felt quite good,

best I've felt in awhile. Of course some of this was slightly

reclined in my recliner. That's how I spend the majority of the time

I am " up " and not in bed. BUT I get up and " putter " (do a bit of

tidying or what not), then have to sit again.

I am supposed to have my shunt reset to the highest position again on

March 2 to ease the over draining, and I was thinking if I'm this

good, I'll cancel. THEN I tried to lie down and I felt absolutely

horrible from the position change. I often have to get up again

briefly then lie down again because it does frequently flare me. But

today was really bad. The pressure on my chest and breathing was

intense.

Could this be Chiari related? I have never had scans looking for it.

I only had 1 MRI and only of my head. This was before I was shunted.

Can being shunted cause Chiari? My ventricles were near normal size

at one point, but then I had to keep having it raised as I couldn't

take the over draining, if that's what it is. I think it's just

enough to make me feel horrible, but not enough to show up on ICP

monitoring. OR the ICP monitoring was done wrong. I do believe

inserting the monitor after I had been up for 11 hours (up at 4AM for

a 6AM Catscan) messed it up. Plus I was not able to be up often

enough!

Well this is a lengthy intro. People have suggested to me over the

years that some of my symptoms sound like Chiari. But I haven't been

able to get an MRI out of my current NS. My original NS gave up on

me. He said " I warned you that you might not be able to tolerate a

shunt " . He believes I had compensated Hydro most or all of my life.

My current NS says I have Normal Pressure Hydro.

I believe my original NS for many reasons, just different things I

experienced in my life.

Lastly what scares me is that I always hear how hard it is to get a

Chiari diagnosis. Then I gather most people aren't bad enough for the

surgery. PLUS I live in Canada so TCI is out of the question. And

currently I don't even have an MRI as my scans got lost ! But it was

pre shunt anyway and without contrast.

I would love any comments or suggestions!!

I hope somebody made it to the end!

/ " shunted2001 "