I definitely think it is.
A yearish before I was diagnosed, I was told I had swollen optic nerves by an eye doctor, the warning sign for glaucoma. I had NO symptoms then except for that, which didn't hurt or effect me at all.
When I was diagnosed, I had a minor eye ache. I wasn't that concerned about it, at all. Like on a pain scale, 3 or 4. Only symptom I had, for about 3 weeks before I even got looked at, because it wasn't a big deal, they were just a little achy.
That progressed into vision loss and headaches.
From slightly swollen optic nevers, just a warning sign, to slightly achy eyes to full blown vision loss and headaches, etc.

I think it is hard to know whether PTC is progressive or not....
We don't know the true cause, and the things that aggravate the disease are different for everyone, and the things that ease PTC are different for everyone to which makes it incredibly hard to treat, so when the right course of treatment is not chosen, of course the disease will get worse, and if the correct treatment plan is chosen, you will see improvement. There really is no rhyme or reason.

Now, of course we know some things that the majority, but not all PTC patients have in common regarding things that may make PTC worse or better, but again, these things are patterns noticed by Doctors, then studied by scientists, and a sizable amount of patients do not fit the mold.

So, we know that PTC happens when the brain thinks it has a tumor, and behaves as if it has a tumor, but in reality there is no tumor.

In a way we can liken the treatment of PTC to Chemo. Every time a cancer patient has a relapse, the Dr has to use a slightly different formula of Chemo, because the body will no longer respond to the previously used Chemo. My Ex had a childhood form of Cancer he never out grew- Every time he had a relapse the Dr's struggled to find a new formula because he had had the same type of cancer since he was 4.

PTC is the same way. The brain thinks it has a tumor, we know there is none, so we can't blast it with chemo, so we try different methods, and if they don't work, we tweak them ever so slightly in hopes that a small change will trigger something in our chemistry that will set things right....it is a lot of trial and error, and mostly, it just blows.

PTC sucks! And totally off topic, I hate that they have changed the DX name to IIH- it completely leaves out the "Pseudo Tumor" the fact that the brain thinks it has a tumor...just a personal preference.

:) LuLu

I think that it may be a progressive disease in some. Others go into spontaneous remission for a period of time or a lifetime. Everybody is different.

I have heard from other patients that for some, Diamox works less well if it is stopped, then started again. Some have said it's effectiveness diminishes over time and that makes them feel worse over time. That hasn't been my experience. My problem is that my body can't handle the super high dose needed to keep my pressure down.

I really do think that in cases where the IH is caused by a third disease process that it makes perfect sense that it could be progressive over time, especially if the root disease is a progressive disease. If only those root causes could all be discovered.

I think it progresses at its own individually exclusive pace varying from patient to patient... Depending on a number of variables that we all wish could be identified. I, for one,began my "headaches" in high school (the 70's) and was just the daughter with the bad headaches followed by being the young wife and mother with the bad headaches that were put on the back burner while I had the bigger problem of cancer and chemotherapy at 30. I endured my worsening headaches my entire adult life along with the addition of sparkling bright lights and swooshing bubbling noises and a racing heart rate upon waking from sleep and the feeling I was eternally exhausted. Finally at 51 the papiledema started and the enlarging blind spot and a diagnosis of IIH. So, now that I am on diamox which all but stopped the headaches for awhile... My headaches are a daily bother and an occasional nightmare. I hate taking diamox because i often feel that i cant put one foot in front of the other but tried without it and my vision loss began to progress. So yes, in my opinion, it's progressive. I will say that addressing the OSA probably saved my life in the long run...

if you look at prevalence studies of OSA, it is clear that OSA increases with age. if you have it young, it gets worse. if you don't have it young, you get it when you are older. probably if the testing methods were perfect, we would be able to show that ALL humans have it, from a young age. a recent study showed that once you hit age 70 you have about a 6% chance of NOT having OSA. since OSA increases intracranial pressure, then when you have IIH you MUST treat the OSA even if it is mild. OSA makes everything worse. it gets worse at the time of perimenopause, definitely by age 40, due to decreasing progesterone levels. progesterone is required for maintaining airway tone. in retrospect my levels dropped rapidly, precipitating my symptoms to worsen. I think this is why the stereotype of FFF (fat, female, forty) in IIH. being heavy increases OSA and also increases estrogen levels. being 40, progesterone drops, OSA increases and there is estrogen dominance.

also, if there is a relationship to jugular venous incompetence, as suggested by Alperin January 2013, this would be expected to increase as we age and everything sags.

so yes I think it's progressive. some may find a way to reduce a trigger and have remission for awhile. but I think the more time goes on, the less likely we are to have that type of thing work. diet and vitamins worked for me 12 years ago. no longer. this time, jaw surgery did it. when I'm 70, I'll probably need a tracheostomy.

I'm curious Sophiasmom, is there certain ethnicities, or just physical facial structure, that are more prone to OSA? When I spoke to my PCP about a sleep study the resident that was with her said I had the facial structure of someone who would be more apt to have apnea. They learned that working in anesthesiology. I am primarily of German and Eastern Europe descent, with some English and Irish. Basically Anglo. LOL. But my face looks more like my German grandmother. She had dementia, and heart problems. When I was first struck with this disease I thought I may also have dementia and was very much reminded of her illness. It was very scary.
Amy

my grandmother had Alzheimer's, and my mother had a heart attack at 61. at 5 am in her sleep, which would be when OSA is worst during REM sleep. her sister died in her sleep. my grandmother died at 4am in her sleep. we all have the same face. narrow palate, large nose with hook and bump on the bridge. deviated septum. overbite with retruded mandible. when the jaws are too narrow then the soft tissue grows upwards creating the nasal structure.

all races are prone to OSA: all humans are. it is the nature of the human airway and quite fascinating really. I have a great paper that explains the anatomical changes which happened to allow speech in humans, which narrowed the airway and caused this predisposition. if you are interested then message me with your email address and I can send it. but just as the bulldog's face is getting flatter and increasing its OSA and decreasing its lifespan, this has happened to humans. but different races have different features that ultimately worsen the narrowing in different ways. Asians have a hypoplastic maxilla (small upper jaw in anterior posterior dimension). Caucasians tend to have a more narrow palate. Africans tend to have increased soft tissue in the upper airway that narrows the throat. all of these things cause mouth breathing. mouth breathing has been shown to further narrow the palate and lead to retruded mandibles (lower jaws set back). I think it is the retruded mandible that in susceptible individuals leads to compression of the jugular veins and the predisposition to ICP not draining properly after it builds up.

I hope that answers your question.

That is really interesting. I suppose I will find out more when I finally get into see the doctor, mid-September was the earliest date they gave me!
Thank you
Amy

my odd addition for the evening. Humans and Neanderthals cross-bred in early history. People have a mix of both genes, with a varying amount of Neanderthal, up to 4%. I wonder if the percentage of neanderthal DNA has anything to do with it. I did genetic ancestry testing with 23andme and they say that people with a high percentage of Neanderthal DNA can have a certain nasal structure.

"Prominent nose with developed nasal chambers for cold-air protection"
www.23andme.com

I am a high % of Neanderthal and I have OSA. Lol.... the Neanderthal genes in us are what gave us speech and language skills. (Humans couldn't talk) That makes sense to me. Sometimes I talk a lot.

isn't it strange, that if you go to the doctor saying you can't breathe, they will send you immediately to the ER. you will be admitted to the hospital until you can breathe again. in fact the two most critical things for life are Airway and Breathing, straight out of the ABCs in CPR. but if you say you are having problems breathing IN YOUR SLEEP, they think nothing of making you wait THREE MONTHS to even get tested. (then it could take another two months to get treatment) it is as if, if it occurs while we are unconscious, our doctors choose to remain unconscious to the problem.
Grrr.....

This is really interesting with the whole facial construction having a part in IIH or OSA. I have had 2 reconstructive surgeries for my sinuses (and a 3rd sinus sx for some cysts) the first two they had to cut 1/4 inch of bone out of each sinus opening because they were almost completely closed. I have small facial features though compared to what you guys describe as having. I have a smaller nose, high cheek bones, narrow set eyes and small ears (if they play into it). I have both Scottish/Irish and German decent in my genes, but definitely look more like my relatives that come from the Scottish side.

well I guess the caveat that I should have said before is this:
I can look at a person's face and tell that they have sleep apnea.
but I can't look at a person's face and tell you that they DON'T. I've seen people I never would have thought, end up with sleep apnea. like when I found out my 5 yr old daughter who inherited her dad's wide jaw has OSA. that was when I knew that it was just the human condition.

I think that just having all of those sinus problems is a big red flag that sleep apnea is likely present. when you struggle to breathe you suction acid from your stomach up into your sinuses and it causes all of that trouble.