I am so sorry that you are going through all of this again. I had a big problem with a lot of the medicine that they gave me to bring down the fluid, always nauseated, and horrible heartburn. You should be seeing a neuro-optamologist, as well as a neurologist. Both of these specialists will be making sure that your eye sight is not being compromised, and also that there are no other issues that are being caused by PTC. Ways that I found to help lower the pressure quickly was laying on my back with my legs bent, but it is not going to fix the problem, it will just help lower the pain and nausea. Crying and any kind of stress will make the pain worse, because when you are upset in any way, your pressure rises just like with blood pressure. Just trying to keep your stress levels to a minimum will help. Stay away from anything with Vit A, which is what is in most creams and ointments that a derm will give you for acne, I learned that the hard way. I hope this all helps, at least for some short term relief.

Why does Vitamin A affect things for you? I haven't correlated that with anything, but am searching for ANY possible reasons why we all suffer with this

I don't think anyone knows why vitamin A and its derivatives can affect ICP. I think that anyone with IIH must research it and know all the different medications that can affect it, to make sure you never take any of that. IIH is a rare condition and the dermatologist should have known but most doctors get sloppy and you just have to be your own advocate.

crying creates a Valsalva maneuver which can increase ICP.

Kbear there are multiple factors that can trigger this for people. one thing that I think everyone must take into account is obstructive sleep apnea. most people I talk to insist that they don't have this but if you research it intensively you will find that all humans have it to one degree or another. and even minor amounts of hypoventilation that might not affect a normal person, will contribute to ICP in someone with IIH. I had jaw surgery for my OSA and it put my IIH into remission. I think it was something about my jaw anatomy that produced this. obesity worsens this by narrowing the airway and the space for the jugular veins, and increases central venous pressure which affects the pressure gradient allowing CSF to drain from the skull.
Also I think that multiple toxic chemicals that we are exposed to can damage the blood brain barrier and predispose to brain swelling in susceptible people. this is all my personal take on what I have observed and experienced.

Hi kbear! I am not sure why it does that, but it has always been something that has spiked my pressure. Everything that I use for acne, or dermatitis has to be free of that, and it makes things very hard to treat those conditions. All of my current doctors have told me the same thing, but like the disease, they don't know why it happens.
Sophiasmom, you have a lot of great information! I gained a lot of weight when I was starting to get treated for IIH, which I then got diagnosed with sleep apnea. It's crazy how one things spirals into so many other things. My IIH was found a few years after I was diagnosed with fibromyalgia and rheumatoid arthritis. To me, I think that that might have something to do with it because my body attacks things that are healthy. I do think a lot of other reasons for these issues is the chemicals that we are exposed to every day. I have done quite a bit of research on a lot of my health problems, and they all lead to the things I have been exposed to.
i always try to explain to people that they need to find what their triggers are, so keep a journal to see if you can make any connections to things.

hi IIHsucks;
I think that fibromyalgia is just a clinical syndrome that is a manifestation of OSA/IIH together. FM is one of the conditions associated with sensory problems, similar to IIH. I think that sensory problems are likely very much related to ICP. I have multiple chemical sensitivity, and figured out that my neurological symptoms of that are the ICP symptoms. I proved that my ICP goes up when I am exposed to deodorants, during a spinal tap. every person with IIH who I convince to take the QEESI test (online) for chemical sensitivity is positive. I think that probably all people with IIH are chemically sensitive, and probably vice versa. the question is, is MCS just a facet of IIH, or do the chemicals actually cause IIH?

Good morning Sophiasmom06! Reading your post is definitely getting me to think about sensitivities. I do think that my IIH came in a result of my FM, and I know that all of my other conditions are basically side affects of it. I do have a lot of sensitivities that I have acquired over the last 8+ years, and my immune system is so week. I try to keep away from what I can, but it is impossible to stay away from everything. I can't use certain soaps, eat certain things, etc., and it's all new over the last few years. I have never been allergic to anything in my life until I started having issues with FM and RA. Since I know now that I do have many new sensitivities, I keep track of everything I put into my body and how often, just so I can piece it together with certain symptoms. Keeping a journal is the only sure way I can keep track of the things that irritate me with IIH, and everything else. Thank you for all of your informative posts, I really love reading them because they get me thinking about everything.

you are welcome! I think that the FM and the IIH are downstream from the OSA. don't neglect that aspect of it. also, are you gluten free? this might be an important thing to do if you are not already doing it. there is evidence that gluten not only can make the gut leaky, but can make the blood brain barrier leaky. anything that makes the BBB leaky can cause brain swelling and ICP. but also, all conditions related to leaky gut can cause arthritis.....
did you find and take the QEESI test?