Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
Come February I will have had my headache, which I rate at around a constant 7/10, for a full year. I have the pulsating in my ear all the time and just tons of pain. When I was officially diagnosed last May they made the big deal, like they do to everyone, about how weight loss will be the big cure and losing even 10% body weight could help. Since May I have lost 50 pounds from simply being nauseous all the time and not having the energy to eat, so that is WAY above 10% for me, but If anything my headaches have gotten worse!
I still have more to lose if I want to be at my "ideal weight" but I am just wondering, if that much weight loss has had no impact on improving my symptoms, is it likely to never?
I still have more to lose if I want to be at my "ideal weight" but I am just wondering, if that much weight loss has had no impact on improving my symptoms, is it likely to never?
I lost way over 10% over my body weight and it didn't matter, either. I remember a few people in here saying weight loss did help, and one person who was normal weight losing weight in the form of less muscle and it helped him. I think everyone is different. I go through periods where I'm super nauseated, my stomach hurts like crazy, and I have no appetite. I have normal periods too where I lose weight for no reason at all. I don't know why. Without trying I'm traveling towards my ideal weight. If or when I get there I'll let everybody know if I'm cured.
Im one of the gals it did help. I have my heory as to why it helps some, others it don't. The reason you have IH is why I think weight loss helps. I knew something caused mine. I have Thoracic Outlet Syndrome, among some other pretty serious med issues. Anyways, with TOS, blood is not flowing correctly, nerves are involved, stuff swells, lots of pain, tremendous pain. With my weight loss it helped the intracranial issues, but it has also relieved some of the blood flow issues. I plan on getting new sleep studies at the end of the year, this is a big factor moving forward for me. Sopiasmom told me about the US sleep labs having new standards in testng. I tink this will be the last peices of my puzzle. Keep at the weight loss, your thresehold just maybe different than the 10%. Pursue other health issues, get sleep studies in November if you can, labs, new imaging with contrast looking at chest up. Hell makeup pains if you have to because this is your life, your health. You deserve the best. My health issues have proven to ALL MY SPECIALISTS, they have to consider new things because the old shit they were taught was ALL WRONG! Don't give up, your answer is there, the right rock hasn't been turned over yet.
I changed how i slept and what i ate. i don't eat egg's anymore for they make me sick as dose a lot of other food, i used to love i just can't stomach anymore.
and for me when i was dx 10% would of been 21 pounds ( i was 217) now i'm 139 pounds and i've lost 78 pounds total in all truth i'm just not hitting normal bmi for myself.
as for headaches i never got them much but i been getting them this week on top of some ear wooshing and i can tell you what did it caffeine, i just went on a trip where i was living off of espresso, then went back to not drinking any caffeine what so ever and pretty much i've been getting headaches and ear wooshing at night for the last few nights.
so i mean really look at everything you put in your body and see if anything might be making things worse.
I'm glad you said those things. I also avoid eggs meticulously. never for breakfast, only in a recipe and later in the day. if I eat 3 eggs, I'm exhausted and have to go back to bed.
my assessment of why? is that eggs are very high in sulfur based protein, which as you metabolize it, it makes a lot of ammonia. especially in me with the type of genetic polymorphisms I have, something called CBS. ammonia has been shown to lead to brain swelling.
I also react to caffeine withdrawal, always have. I have tried to go off it, but am always a little off unless I have some in the morning. yes, caffeine can increase CSF production. but CSF production is not the anomaly in IIH. the problem in IIH is CSF drainage, and brain swelling. caffeine has been shown to reduce brain swelling.
what did you change about your sleep?
meweird I pretty much only drink water, so I drink very little caffeine and I don't eat eggs at all because they do make my stomach feel very sick. I have really looked at what I eat and even talked to a dietitian and basically what I have been eating for the past year has been pretty healthy foods and low calorie.
I'm just beyond frustrated because I have been on so many meds, I have lost weight, I have done LPs, and still no relief for even a day.
http://www.glidewelldental.com/dentist/services/removables-aveo-tsd.aspx
if I could keep it on my tongue all night long and mouth breathe, it actually worked better than CPAP/BiPAP, in terms of how I felt during the day. I think it holds your tongue forwards off your jugular veins to reduce resistance and improve CSF drainage, in addition to the improvement in sleep apnea.
the only problem is it fell off a lot and then I would feel like crap again. that's why I finally had jaw surgery. which helped a lot. way better than BiPAP. which I think was just increasing resistance in my jugular veins.
a little odd how a few of us avoid egg's i always just thought it was a me thing but it could be something bigger?
and yes it sucks to do so much and have nothing seem like it's changing :( though maybe feeling better is like weight loss which sounds silly but i lost 50 pounds and i had people asking me if i lost weight, then i lost 25 more pounds and everyone that saw me after i lost 50 but then saw me again 25 more pounds down all of sudden everyone notices i get omg you look amazing i almost didn't know that was you bla bla bla. it wasn't the first 50 they noticed but just the last 25.
maybe feeling better is like that you can do a lot of work but till you get that little missing piece for you it's all mute. just like i been feeling amazing... till i added caffeine back in there and now i get headaches if i do and if i don't ( i'm weaning myself off of it again)
also my sister had a book thats amazing with body aches and even in there it talks about how knots can make CSF higher i should go get the name of the book but it really helps every day pains and well just learning about our body.
I have to say that since being dx i've really started to try to listen to everything going on in my body and doing some slow stretch yoga, i have to say i'm more intune with my body overall. Not saying i always listen ( or i would of been sleeping instead of throwing back shots of espresso haha). but i feel like that helped a lot with getting me better noticing patterns like my ear wooshing would always be worse at night when i laid down.
and now i'm ramblinging but yea. in the last 3 and ahalf years a lot has changed for me. and i would say maybe the last 3 years i just got the hang of it.
I think that the people noticing your weight loss must have to do with shape. like, maybe the first 50 lb you got smaller but your shape maybe didn't change? then the last 25 maybe your waist came back? and that looks really different than the round look.
as for the weight loss they always toss around like a roll of paper towels when it's new you can take 2 or 4 and not notice that you took that many but when its at the end of the roll you notice how much smaller it looks when you take off one sheet. the smaller you become the impact each pound makes is bigger in that way.
But also why i think when they tell us to lose 10% ( which i was told too at the start) and i didn't see anything happen when i did so it's just not enough for some of us.
I started out at 297 and am down to 227, so a total of 70 pound lost so far. I still have quite a bit to go, but I know for me personally, my paps got better and now they are gone. However, it took me hitting the 60 pound mark for my paps to clear up and for my headaches to improve. I still have issues, like the wooshing in my ears and weird eye feelings, but my eyes feel way better now than they did when I was 70 pounds heavier and my headaches are very rare now. For me, I believe losing the rest of my weight will either cure or greatly lessen a lot of my symptoms. I don't believe in the touted 10% docs say, I believe if weight loss will work for you, it varies from person to person. My ophthalmologist deals with PTC a lot and he said that some really overweight people can lose 15 pounds and they are totally better while some people have to lose 100 or more pounds for it to go away, so he says he doesn't think there is a magic number, just that it's different for everyone. He also said that in 60% of his cases weight loss puts PTC in remission, but there is 40% that it doesn't do that for. I like that he is completely honest with me about it. So, I think that giving weight loss a chance is a great idea, maybe it will work for you and you just haven't hit your "magic" number yet. Who knows. Keep trying!