Pseudotumor Cerebri Support Group

Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...

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Low pressure head pain?

loveyalots143
loveyalots143
I know I've been whining a lot on here lately, and I apologize. When the weird stuff happens all around, I really try not to come here and moan and groan.

That said, I have another question. I have had my lp shunt for 7 months, it is non-programmable, at least as far as I can tell and guess from the NS. Is it possible to start having low pressure head pain this far out? I only had one day of low pressure pain in the hospital, so this is really bizarre.

My head pain today is almost identical to what would happen after a lp, feels like my head is being pulled back to a horizontal position, that gets worse when I sit up or stand.

Thanks in advance,
Kristena
deleted_user
deleted_user
Hi Kristena,
I dont have a shunt, and am definitely not a medical expert, but i have learnt to listen to my body.

If it is enough to concern you, is it enough to check with the neurologist?
I know when I ask a question here I dont want to get fobbed off with go check in with the doc. I want someone to come back with 'oh i had that, it was nothing to worry about', but sometimes I know its medical help i need i just want to be reassured that i am not making too much of a small thing.

So if i was you I would think: the surgery was 7 months ago, that was enough time that things should have settled down by now so i am right to be concerned. i know that you can still get headaches with shunts but i know what a usual headache feels like and this dosent feel usual. I have had low pressure symptoms before and this feels like that. i know that the shunt is nonprogrammable so it should not change on its own.

All this means is that you are concerned. not that you are necessarily in any trouble. and isnt that worth a telephone call to the neurologist (does your neurosurgeon do those?) just to ask about low pressure headaches. because there is no such thing as a stupid question when you are concerned. and if your concerns are groundless then you have learnt something that will give you more experience next time it happens.

Dont know if that helps any - and you never know - one of the others may still come back with the - i had that it was nothing :)
HHugel
HHugel
If you feel like it is a low pressure headache here are a couple suggestions. I have both types of shunts at once and they are both programmable. For a low pressure headache, stay laying flat as much as humanly possible and drink lots of caffeine. Also, if you take diamox, try skipping the next dose, or 2, until things settle down. Usually if it is programmable, they will give you a card with the valve type and the setting listed on it. Any time the setting is changed they will update the card, so keep it handy, if you have one. Once you get the low pressure headache resolved, if you continue to have repeat occurrences I would bring it up to the Dr. Gravity is always an issue with non programmable lp shunts but there could be other things happening as well like a break in the line or possible leakage somewhere, especially if you have an unexplainable drainage from your nose or down the back of your throat. Best of luck to you!
RN4408
RN4408
I do not know the answer but wanted to say - don't apologize! This is the PERFECT place to "moan and groan," vent, ask questions. Hope you are feeling better!
mommies4
mommies4
I agree with HHugel. & It's not uncommon to continue to get low pressure hd and the only thing that stops that pain for me/many is to stay laying down as you see as soon as you get up the pain returns.

I do have a programmable LP now 4 yrs and still have this problem.I am going through this now yet again.Day 6 or 7 of this so Monday I will call my surgeon so he can chk my setting.Also any mri done anywhere on your body will change the setting of a shunt.I learned that the hard way.4 yrs later and I still don't have all the answers and don't know that I ever will for myself.Live and learn I guess. Coffee or something with caffeine helps for sure. Sometimes it takes hours for this to level out for me. Good Luck to you.Hope you find answers soon...