Low/High Pressure H/A - Cathy & Monica

[DystoniaGal]

Here is how my NS explained it to me. When you have a low pressure headache, your brain begins to sag and you should have neck pain, almost like an acute ACM. High pressure usually are always at the top of the head/behind the eyes region.

I hope this makes sense.

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Monica

Do you know how the anti-syphon works? At first I thought I couldnt drain at all when upright. Here is how my NS explained it. When upright, the anti-syphon only allows a trickle of CSF to drain, like a dripping faucet. Once you are laying down it is allowed to drain faster.

Suzie

[CathyE]

Thanks Suzie. What about strong pressure on the forehead and sometimes cheakbones ? Lying down does help, so I assume it is over draining.
And I do get pain at the base of my head too. It varies!
Then it progresses to the whole head sometimes.

Well, since my NS did ICP monitoring 2 years ago with no significant results He was the only NS I found out uses the Codman around here. I was hoping he'd switch me from the Strata to the Codman, but the ICP monitoring ended that idea. I'm just sort of accepting it as my life for now.

I must say I DO have some good hours most days. But it's hard to get much done around home without getting too flared. Then if I push it too much (but usually not a lot accomplished) it takes a few days or more to get back to doing much tidying at all.

We have a support group for adults with Hydro I attend sometimes (mostly by phone), and it doesn't seem anyone knows a better NS for me to try. Very few NS's even use programmables after a bad trial/study in the 90's, several low risk patients died so it was cancelled. Then it seems hospitals choose either the Strata or the Codman but not both!

[monicad1974]

The way the asd was explained to me was kinda the same. Except at the times when you sit up it usually will open more the asd slows it to where it is a more constant flow instead of a gush of fluid. One thing I wonder about with the fluid held back will I have the same systems as before. Like high pressure I was more prone to head pain when I was up right moving around. Low pressure I could lay flat and relieve the headache. Basically what my nsg told me is instead of flowing like a river when the shunt opened it was more like a slow stream. Kinda like you said.

[mister]

I have noticed in the past that with low pressure headaches they decrease if you raise the foot of the bed while you are in bed.

A lower center of gravity can lessen the headaches too when you have high pressure headaches. Sometimes there is nothing that can lessen the pain of the high pressure though and you should seek assistance as soon as you can to see if a shunt tap or spinal tap can lower a high pressure or at the very least have a ct scan done to see if the ventricles are ok

[monicad1974]

The reason I am pretty sure it is high is I could not get in any possition and relieve the headache. I was nuts hurting with the trip from Asheville to Charlotte but after the adjustment on the way home the pain let up just enough to not be crazy riding home. Today is some better I still feel major fatigue but just going to the bathroom does not cause me to go into feeling like I ran 3 trips around my house. I don't have the hopeless feeling that it's not doing better. I know it takes a few days but you sometimes just can't control your feelings. Thanks ya'll...

[Jordan]

Hey Monica,

Sorry to hear you're sufferering. Just wanted to say that your symptoms sound almost identical to mine after I'd been overdraining for YEARS and then had a 'proper' shunt put in (by 'proper' I mean one that didn't overdrain me like crazy!). When I was drastically overdraining, no position gave me relief...even lying down for ages. In fact sometimes it would hurt MORE when I lay down as my vents had become so non-compliant due to the overdrainage. Riding in cars sent me crazy too. Any prolonged movement actually lowers your ICP, my NS said. Initially it raises it (like when you momentarily lift something heavy) but after a while if you continue exercising or moving around, it lowers it....so if you're already low pressure your headache would get a whole lot worse if you're unlucky. As my vents were so tiny when this new shunt was put in, I felt so much worse at first as they blew back up. It's taken a long time for me to adjust to normal pressures rather than low, and any pressure change, no matter how tiny, feels huge to me. Due to what you said about riding in cars, feeling worse when you're moving about, pain at the top of the head then moving to the back...all these are low pressure symptoms too. It's been almost a year since I had my overdraining shunt changed for one that actually does what it says on the tin...and I'm still constantly adjusting. I'm now on setting 5 but could only tolerate setting 0 for the first month. Then I went up to setting 4 after 3 months...and that was too high so they brought me back down.....it's been long and slow to get my brain to adjust to normal after such drastic overdrainage as I had. Could be that your is going to take time...but watch out for those symptoms that you assume are high pressure...I thought mine were high pressure symptoms too and got my NS to lower the pressure...and I couldn't have been more wrong! I was going the wrong way! Not saying you ARE low, just saying be careful as the symptoms are so similar. Like we really need that and our problems with hydro aren't complicated enough already! :rolleyes: Hope you feel better soon though...if it gets worse on 170, I'd go back up a step.

[monicad1974]

My situation has turned. My fatigue is probably 50% better but my head is splitting. I usually go through a worse headache what I call a bruised feeling for several days after an adjustment then it will level out and I can see what the adjustment has done. Sorry I was so distressed the first day or so.

[CathyE]

Glad to hear you feel you're improving.
I think this is why people have such a hard time finding the right pressure.
For some people I have heard it can take even 8 months! (from a mother who sent her over draining son to school on a cot! trusting he NS who said he would eventually adjust & he did! )

Cathy

[monicad1974]

I called Lisa today and let her know the nausa was much better, the last adjustment had helped my shakes and trembling but still having headache problems.And my energy is some better I also ask if I could go down another notch. They were glad to hear everything and I'm going Thursday for another adjustment. So I will be at 150.