hi Cat;
I have had similar issues with food but not this severe. some of us are more sensitive to foods than others. when we have PTC we can have many triggers. I react to chemicals, stress, noise, sleep apnea, and food, although all is better since I had jaw surgery to deal with the OSA: I think this improved my jugular venous drainage.

before my surgery, and before treating my OSA, I could not eat protein. if I had a bite of chicken, I would go into deep brain fog where I felt like I was trying to wake up from general anesthesia. eggs also can do this, and I still cannot eat straight eggs, only small amounts in a baked product. I think that my body takes the amino acids in the protein and turns it into ammonia which is known to cause brain swelling, and this increases my ICP.

anything with a lot of salt can do this to us, we are not supposed to eat too much salt. water follows salt, so if your brain is leaky, the sodium goes into your brain and the water follows and then your brain swells, increasing ICP.

now, there is new research about gluten, indicating that it can cause leaky gut and also leaky brain. I would absolutely go gluten free if you have noticed your symptoms triggered by bread. if you can get your gut to heal, perhaps then you will be able to eat more foods without them making you sick, if your gut stops leaking. fish oil can help heal the gut. also probiotics. try digestive enzymes too?

I and my daughter are very sensitive to tyramine, and I find that I have to be very careful about what I eat to avoid tyramine and MSG, because eating these things can cause the ICP symptoms. I used to think it was migraine but in me it's ICP. you will want to avoid all processed food, anything that has "natural flavors" or "autolyzed yeast extract" etc because these are MSG hiding in foods. anything fermented can contain naturally occurring MSG, and anything not fresh has higher amounts of tyramine.

after telling you all this, I will tell you that I never had papilledema, and my ICP was 23, yet I was sick as a dog. I had bad brain fog, maybe not as awful as you describe yours. I woke up with it every morning, and sometimes by 7pm it would lift. it came on in sleep from my sleep apnea. you must treat your sleep apnea. it is what is making you sweat in your sleep. the anatomy that causes a deviated nasal septum causes sleep apnea, and fixing the septum is good but not nearly enough. look on doctorstevenpark.com for info about UARS. also find my blogs on IIH on that site. look up on PubMed for IIHWOP: IIH without papilledema. print out the abstracts and bring to your neurologist, find a new neurologist until you find one who acknowledges you still have it. there is a paper on PubMed on intracranial pressures in chronic fatigue syndrome by Higgins which should open your eyes about what a normal ICP is or not, and you can show this to your neurologists if they try to tell you your ICP is not high enough to qualify.

so, to be clear, your symptoms are absolutely PTC/IIH. many of us have the eye swelling. 77% of people with PTC have lower leg swelling too. I think that in PTC there is a systemic problem with the barriers that causes this swelling, and it sure sounds like you are leaking fluid everywhere. Lasix would be a good med for you I bet.

there is a radiologist doing research on IIH at the U of Miami, an N. Alperin. I wonder if the neurologists there might be better, if it would be worth traveling there.

Mary here has gotten good results with diet alone, hopefully she will be along to give you some advice too, pertaining to what she has done. I also know someone else who went into remission doing a very natural diet.

Thanks SO much Sophiasmom06 for your reply and all of the wonderful info. I will definitely look into everything you shared as well as the Dr in Miami. It's worth a trip to find someone who can help get me back on the right track. I also need to look into the sleep apnea. Theres so much to this.....sometimes its just overwhelming. I'm so thankful for my husband and boys. I don't know what I'd do without them, as well as the kind folks like yourself and the others here on daily strength who share your wisdom and experiences....or just being there when we need to vent.

Thanks again and Many blessings,
Catrina

Cat,
Im sorry this is happening to you, when I was at my worse i used food as my medicine as I didn't tolerate the meds used to treat IH.
Tell your Dr they are CLUELESS, I had a grade 4 papilledema, with opening pressures around 11!!!!! Now how did I have papilledema with such low opening pressures? They are way off base when it comes to criteria used to dx IH. Now all of the sudden I have seizures with no IH in sight. I had severe sleep apnea symptoms, had big seizure, treated, now no sign of sleep disordered breathing and im starting to think my Keppra has something to do with this, 3 sleep studies to include all night eeg? Nadda

I adopted a no additive, chemical, preservative free diet. Good protein, low to almost no carbs, I ate a butt load of apples, whole shelled nuts, non processed items. Natural foods are best, i avoid canned, bagged, dried, boxed food, to include my salt, pepper. Old school homecooking, i cracked my own pepper, himalayan salt and/or sea salt that i ground lightly on my food, tumeric, cumin, curcumin. I use ginger root, i grind lots o stuff with my good ole saladshooter (old school tool) I bake or grill, steam and lightly sautee my foods, coconut oils, quality olive oils.
Cabbage became a great friend of mine, along with fish and black beans. I grow my own veggis in the summer and fall ensuring they arent sprayed, or wax coated. I eat alot of cucumbers, zuccini as well.
Corn, pasta, rice, russett potatoes make me very sick. Start reading up on the coloring our food is poisoned with, what table sugar is really made from, even baking items like white flour. It will literally piss you off once you realize we are sheeple being slowly killed by our food supply. Lastly, your water needs to be addressed, your toothpaste, mouthwash (all flouride filled), laundry detergents.
I realize thats alot to take on right now, but its all true, ive spent many years working on this, i was the guinea pig to cure my IH via lifestyle and diet. Please ignore my lovely typos.

Oops, forgot to add. I also suffer POTS or so they say. My bp runs super low, salt makes me very sick as well, so i drink water in excess, or until my heartrate acts right.
i always suggest everyone get a quality bp home monitor and blood sugar monitor. During times over severe HA i had crazy readings, but then saw a pattern. Barometric pressure related ha's always revealed severly low bp and glucose. Didnt matter if i ate before readings, that barometer makes me feel yuck. So i would up salt intake with lots of water.
I do realize that sodium is messing with you, have you had blood work looked at lately? Hows your calcium and potasium levels looking?
Im just thinking outloud here, maybe sopsmom will add to this as a good friend of mine was having severe issues with this as well and ended up with heart attack sodium, calcium, potasium goofed up, now shes on meds because it messed up her hearts electrical system so to speak all because calcium was off. I wouldnt mess with this when it comes to these things so its worth getting some labs in right away if you havent.

Wow Mary1973, thank you so so much for the detailed information. I've had to adopt a very strict diet as well. Of course processed foods are a big no-no, as well as any bottled, caned, bagged or prepared food. If I don't prepare it myself I usually end up very sick for days. I notice recently how much better I feel almost instantly if I eat chicken (without any salt). I feel a surge of energy and just all around better. Ive never been a meat eater so I'm having to learn to adapt my diet to include the chicken. Thankfully I love fruits, veggies and nuts so I've been surviving off of them. Ive had problems in the past with my heart rate being too high off and on. They dxd with Mitral valve prolapse. It seemed as if I would easily get dehydrated and have terrible palpitations. Almost as if my electrolytes were off balance? It is time for me to have blood work done again. I'm b12 and D deficient. I never knew sleep apnea played a part in IH. I'm just beginning to look into this. I find it so crazy that the only time I have the severe sweating while asleep is when I'm in the sodium coma (as I've started calling it). I wake up drenched but don't sweat like that any other time. I'm so tired of these dr's who are absolutely clueless. When I was dxd in 2004 with the spastic cerebral arteries and increased pressure they told me they had never seen that before and weren't sure how to treat it. They decided to try nimidopene that is used for brain bleeds. It worked and I was eventually able to stop the medication. A few months ago they found a small brain aneurysm. Something is still going on in there and the pressure is high again. I wish my old neuro was still available. Anyway, the fight continues and prayerfully I can connect enough dots to make sense of all of this and get things back on track. Thank you for listening and all of the great information/suggestions/advice. I'll keep you posted.

Anytime and your welcome. Hey, can i ask, how's your kidney & liver.