I wouldn’t stop taking meds without discussing it with your doctor first. 8 is great!!

my dr wants me to stop the lasix.
I know 8 is great my confusion was in the disparity between the two ranges.

The way my neuro surgeon told me was if you’re 10 years old or lower it needs to be below 10 if you’re older than that up to 20 is ok closer to 15 is great! I’m pretty sure the concern is if it’s higher versus lower pretty much if you’re an adult and it’s anything below 20 you’re golden :)

But there is an issue of being too low which is why when I was getting low pressure headaches my neurologist had me take 2 Excedrin due to the caffeine it has. After this last LP he had me stop the lasix.

the way the current guidelines are written, they don't consider anything abnormal in a child until the pressure is 28!
this paper was a breath of fresh air:
https://www.ncbi.nlm.nih.gov/pubmed/28838819

Lasix does not treat migraines. this was one of my points when I saw the docs at Stanford and they tried to tell me I had migraines. They had to concede I was right, that it couldn't be migraine if Lasix treats it, or prednisone prevents it.

Now my neurologist wants me to do Botox. I do not want to because I do not have migraines. He says he has had other PTC patients who had migraine like headaches after their PCT stabilized and the Botox helped them. Problom is i dont have migraine like headaches, I have headaches related to my ICP, so my PTC is not stable. Why should I get shots to paralyze nerves all over my head if they wont help my problem? I would prefer having LPs every few months because I always feel better after them, even when the OP is normal. My other thought is to do the stent even though the stenosis is mild perhaps that will get my body back to normal.

Lasix helped to an extent but not completly. Steroids help but at a high dose they eouldnt let me stay on such a high dose...

yeah, I am trying to avoid prednisone now because I really need to lose weight.

so, how long do the LPs help you for? if it is on the order of weeks, not days, then this does imply to me that a stent would help you, that it is the stenosis that is causing the problem. if this is a dynamic stenosis then it could be reversed by acutely reducing the pressure, yet it could slowly creep back.

I'm with you on the Botox. one of the best places for getting attention for the type of problem you describe would probably be Barrow in Phoenix.

the LPs help for a few weeks. What happens is I feel great great after the LP, no matter what the OP is, this last one was 8, and I felt great, I don't remember the last time I felt so great, then I got my period and I felt a bit worse, once I was over my period I started feeling better but I didn't fully back to as great as I was right after the LP when I will have a hormonal surge with ovulation I will again feel worse and get better but not quite as good as before.... this will go on for a few months until I don't feel well all of the time... My doctors do not understand why this happens and say if it is triggered by hormones than it has to be migraines. The pressures are normal so it is not PTC. It does not make sense that I feel better after normal LPs. I say if I feel better after normal LPs it obviously has something to do with my ICP level. So frustrating...

they are clueless. of course the hormones affect ICP. they just don't get it.

at your period you swell, right? fluid retention. why do they think this isn't happening in your brain?

at your period, your progesterone level is the lowest in your entire cycle. this does two things. progesterone can reduce brain swelling. so having low progesterone does the opposite, and the brain is more swollen. also, progesterone supports upper airway tone. so when it drops, sleep apnea is worse. when there is more apnea, there is higher ICP. I used to have to take progesterone all the time because I had more brain fog without it.

I think the problem is this: they have missed IIHWOP forever and ever, mistaking it for migraine, because they aren't doing LPs on every migraine patient they diagnose. so what has happened is that all of the triggers and symptoms and everything that goes along with IIH, they THINK are triggers and symptoms of migraine. so now they use that to say people have migraine when they don't know WTH they are talking about.

I admit that an ICP of 8 seems totally normal. but it is hard to argue with your improvement after LP. if it was just from acutely lowering the pressure, it would only last 2 days max. the fact that your improvement lasts for several weeks tells me that it's probably from your stenosis. If I were you I would go to Barrow or Johns Hopkins and ask about the stent.

But my stenosis is minimal, which is why my neuro ophthalmologist is refusing to consider me a candidate for it, and my neurologist agrees, it poses too much of a risk. I see the neuro ophthalmologist again next week. I will broach the subject and see what he says.

what was your pressure when the MRI showing the stenosis was done? my point is that this sounds like a dynamic stenosis. it is really a floppy area in your vein. as your pressure goes up, the stenosis increases and causes a positive feedback loop to raise your pressure more and increase the stenosis. then the LP breaks that positive feedback loop when your pressure drops suddenly. then the cycle starts all over again. if they did the MRI when you weren't having a lot of symptoms, then they wouldn't see that much. this is why I think you should go somewhere where they understand this kind of thing. my son's neurologist knew NOTHING about it.

I am going to ask my Neuro ophthalmologist whom I'm seeing tomorrow to compare the two mrvs one from when I very unstable with high opening pressures and one when I was not that symptomatic.
Eight now I am dealing with a ridiculous amount of edema when I am hormonal for which I am on 20 mgs of Lasix and going from high pressure to low pressure. I am on so much medication I really feel like just giving up on drs and tests. I'm tired of being poked and prodded and getting no answers.

so test yourself and get your own answers.
https://www.ebay.com/p/Anti-Snoring-Tongue-Device-Silicone-Sleep-Apnea-Aid-Stop-Snore-Sleeve-Aone-TSD/28007096056?iid=222600494674&chn=ps

using one of these for a few weeks, gave me the answers I needed to move forward. these used to cost 150.00, now they are cheap. what do you have to lose?