Hello all,

I have had increased intracranial pressure for 3 years - I've had 5 LP's - each one was administered well and haven't had any problems with the docs performing them. I had an opening pressure of 27, then 25, then 22 then 20 and 20 again.

I know 20 is near the high end for normal but I was wondering what sort of readings others on this board have had.

When they do the LP's they drain CSF until I'm at about 12 or so afterwards and of course I feel great for a while (half day) until the ICP rises again.

I know some of you have very high ICP so I feel like a bit of a whiner for sounding off when mine is in the 20's but am very interested in what others have for opening intracranial pressure after a lumbar puncture.

Thanks - Peter

hi peter

i have had 4 lp in the last year my higest was 45 that was the first one i had done then it was 35 then 38 then 25 the longest time my pressures has said away is 9 days but then it come back with revenge

from vaz

Hi Peter, the last time I had an LP the opening pressure couldn't be read as it was so high, but at the time I did have a blocked shunt, so previous to being shunted it was around the 30-40 mark.

I don't think you sound like a whiner at all , especially here, it's good to get things off your chest and especially with people who understand.

Heidi x

Thanks for your replies - I've been trying to lower my ICP and somedays think that Octreotide or a shunt is a good idea, but since I've been making progress without either I've decided to just continue on my path. So I guess I am / was polling to see at what point others take action - I'm guessing 20 isn't that point - When mine was 27 I felt really rotten all the time. I can't even imagine 40!

Peter

I did really well on Diamox for 12 years and even achieved remission, so don't give up hope. Hopefully you'll never reach 40.

Peter, I have had 3 lp's. All of mine have been around 22 - 24 cm. of water. The lowest they brought my pressure down was to 16, and that was better but not low enough. After the lumbar drain test I had last month, the PA did not take a closing pressure, but I think they drained off enough fluid that I had a good response. I started taking Diamox the night before they pulled the drain out, but I think my dose was too low because the symptoms are creeping back. My Doctros want me to do a vp shunt. They feel that since that is the only thing that makes me feel better, in fact symptom free, so I should go for it. I probably will.

Wylee - All my symptoms dissipate after an LP also so I have consider a shunt but am too worried about it. Have you considered Octreotide? So far all the first person accounts (I've been able to find) on it are positive.

Peter I have to admit that since being shunted my symptoms have dissipated dramatically, and I am living quite comfortably with it. What worries you about having a shunt, is it the surgery itself or the living with one? I know it is very overwhelming to be told you need one, and your reservations are quite natural about it, I was the same when it was first mentioned to me, and I did put it off for as long as I could.

However, it has done it's job perfectly well, and because of it when I went for my Neuro-Ophthalmol appointment, my visual fields test plus them checking the backs of my eyes, revealed that my optic nerves were pink and healthy, which proved that the shunt was working. I took a lot of comfort from that.

As a shunt is usually a permanent thing it's something you have to consider very carefully and hopefully other members will be able to tell you about how they have been with a shunt.

As for Octreotide, it hasn't had a proper blind study yet and from what I have read on the drug itself, it seems to work more like a diet pill. We have to remember that not all sufferers of IIH have the same trigger, with some it's weight, hormones or a medication for instance. As there hasn't been a blind study done, if your trigger isn't your weight then how affective would the drug be? I think until we have evidence on a larger and more thorough scale from more credible research, I think it's difficult to make a decision on it's effectiveness.

Heidi

Hi Peter..welcome to the group!

I know my initial pressure was only 20, so they didn't want to diagnose me w/ PTC (IIH) at first. They ended up diagnosing me because my symptoms completely disappeared after the LP. Diamox worked initially, but symptoms came back after a few months. They did another LP and my pressure was about the same (eventually it started rising; I think 39 was the highest recorded, but I had two instances where either the needle popped out or fluid exceeded guage they were using because the pressure was so high). My symptoms went away and came back w/i a few days of every LP, so they decided on an LP shunt. I wasn't able to work at that time and had actually been off for a few years. I started to improved after the shunt placement and have been able to maintain a fulltime job since 2005.

My shunt hasn't been perfect, but my quality of life has improved significantly. I had revisions in 2005 and 2007, but they were very simple procedures on my catheter. I have developed a Chiari Malformation as result of LP shunt, but wouldn't have been able to function all this time w/o it.

Unfortunatley, everyone seems to respond differently. I think you just have to be well informed about your options and have a candid discussion w/ your physician considering any other health issues and concerns. Good luck Peter..let us know what you decide!

Julie

My Case of PTC is a bit diferent. I don't have "triggers", it appears I have clogged holes that prevent the free flow of used CSF from leaving the system and entering the flow that goes to the veins. It causes a slight back up of fluid which causes the pressure to rise, at least this is what my Doctors are thinking. Since they cannot root out the holes, we have been looking for other ways to have the same outcome. The shunt seems to be the answer. They don't do lp's anymore, only vp's and the NS is reluctant to do it. I'll find out more at the IH conference next month in Ohio.

My first LP reading was over 55, since then every LP is between 29-35 I was having LPs every 4 weeks but it has now gotten to the point where I need them almost every week which is unreasonable, another MRI was done a few weeks ago and it appears i have developed transverse sinus stenosis. I am having further test done in a week to see if I am a candidate for stenting.

I am new to this group but was wondering what everyone elses pressures were as well. My opening pressure was 28 and my headache disappeared for about 2hours then back with a vengence. Doesn't stop or help vision issues though. Thanks for sharing.

I have had 2 LPs and my readings have been 220 and 230, so not terrible. I have felt much worse than I did at the time of the LPs and know my pressure probably has gotten close to 300 at times.
my pressure is lower when I am treating my sleep apnea. with this, a very low dose of Diamox seems to be helping also.

when i had my internal pressure monitoring done mine got to 52. Sucked. Lowest via LP is at 27, highest 40.

i have only had one reading so far since i am new at this. but mine was 37.

My first opening pressure of the year was 36 my second 27... somedays I feel like my pressure is higher than others and I wish there was a way to test that.

i have had 48 lps over 10yrs and cant rember every reading one of them was so high it came out the top of the mesuring thing. but it is uasualy between 27- 39+

u r not winging you have jut as much right to vent as the rest of us x

Hello everyone, I have been reading all of your pressure readings and feel encouraged. I am convinced my ihh has come back. I was diagnosed 18 years ago because I had papilloedema and my opening pressure was 39. I have had a recurrence of symptoms over the past few months and am struggling to get my concerns recognised. My GP has finally referred me to a neurologist, but I will have to wait months to see him as it is not classed as an urgent referral as there is no sign of papilloedema. Do you all have papilloedema or can you have problems with raised pressure without papilloedema? Also do any of you have sinus problems? The back of my nose feels as if it is being constantly pressed from behind.

hi Sarah;
I have IIHWOP = IIH without papilledema. search for it on Pubmed. there's a paper by a Dr. Bono and others too. I think it just depends how high your pressure gets. mine has been in the borderline when I've been checked, 22-23 but I know it gets higher, as I now know that my brain fog IS increased ICP. it always gets better after my taps.
also, when my ICP starts to go up, I do tend to feel it first in my sinuses, as if they are getting congested from the inside out. I think the sinuses and the eyes are just the areas in the skull where there is some compliance for that pressure to push into before it starts squeezing our brains.
hope that helps. sorry it will take so long to see neuro. I don't think that's acceptable, if your symptoms are disabling. I would go back to your GP and insist he do something. the LPs are done by neuroradiologists in the hospital so your GP can refer you for that to get re-diagnosed, and can give you an RX for Diamox if the ICP is elevated. I'd ask him how urgent he would think it was if it was HIS brain getting squeezed? and if he might be feeling a little anxiety if that were the case?

Deb

Thanks Deb, it is so frustrating that they don't listen when I try to tell them that I have felt like this before. I am managing to get through each day by making sure I get time for naps, keep the lights low and avoid bright places. I can't read much these days as it hurts. I can see but it seems like visualising is really hard work instead of a normal thing. There hasn't been a day in the past 6 weeks where I haven't had a headache! My optician sent a letter to my GP suggesting an urgent referral and he said that opticians often overreact!! No wonder people get depressed. One of the problems I'm having now is keeping calm and relaxed about it all as they might end up telling me my problem is depression and anxiety rather than iih. x

Hi Sarah,
Lots for us have bouts with depression and anxiety.. we are here if you need us... hugs im sorry your gp is being bull headed