All I ever hear is how my problems would be solved if I just lost weight. I don't live a sedentary life style by any means and have recorded my calorie intake, I love my leafy greens (I make sure not to over use the dressing). I love carbs from a distance and I like to chase my two year old around. Unfortunately my body is my enemy. I know I am suppose to make peace with it unfortunatly everything I want to do is squashed by this awefull shell I live in the seems to literally be slaughtering any hope of normalicy. In an effort to crush it and not be part of the crushed I have decided to join a gym and excercise.

At first all was well on the excercise front; low impact, welcome to moving then :suspect: my body revolted. I'd thought with enough pills I don't have to feel anything right... but then came the crash :ill I swear my whole body was in revolt, worse headaches, worse vision, every muscle especially along my spine felt like it wasn't ever going to move again and I have been baby-ing myself for two weeks.

How do we lose weight without excercise am I suppose to duct tape myself to a wall and never eat again (I don't think that would work either I think my fubar metabolism would just make me gain weight starving). I am beginging to think all physicians are just size-ist. "If its fat tell it to get thin and disease will disappear," like I want to be fat or something... nuhuh So I physically cannot excercise despite the amazing determination and reckless disregaurd for myself and Im still fat but I have the best diet of say 90% of the people I meet.

I am a failure at the excercise/weight loss, my two year old wants his mediocre playmate back ( I was never able to do everything with him I wanted but now I can't move) and people keep giving me various deserts to make me feel better... Im a hostage of my meat popsicle I call a body...

Thus; I need some feedback anybody else put themselves through anything remotely like this?

YES YES YES YES YES!!!! Me too hugs I am exactly the same and it has frustrated me beyond all reason. I wasn't overweight until they put me on steroids to treat the pain caused by my first LP shunt, then the weight piled on. They have amassed my medication to the point I now take 8 different medications several times daily. They have since told me this is the reason for the weight gain because my metabolism has been altered.

This I have to admit didn't make me feel any better as it didn't solve my problem, and dieticians could find no problem with my diet, and although I cann't be as mobile as I was before due to my back problems, I do try to keep within my calorie content.

It would be interesting to see how many members gained their weight, or the majority of their weight while they have had IIH. It debilitates us in so many ways, and takes so long to be diagnosed that it would be quite an eye opener.

Me too! I joined a heart healthy program with physiologist, behaviorist, & dietician for a year..ended up in worst pain ever. They couldn't find anything wrong with behavior or diet, so kept trying new exercises. Neurologist ended up telling me no straining like weights or core work. By the time it was all said & done I could only tolerate stationary bike & stopped losing weight..it's so frusrating! I have always struggled with weight, but was active. Now I've gained most of it back. I gained the majority after diagnosis too.

There is definately a link, there has to be... I feel that the more I push myself the worse it gets and I never recover. Like there is a limited amount of _____ that I can do and then my body will never do it again. I am in pain all the time and people keep trying to reduce the amount of my pain to something they understand like, "oh I totally get migraines sometimes I am out for days..." :Angry: I gets thats IH for ya.

remember that one of the key symptoms of CFS (chronic fatigue syndrome) is exercise intolerance? and one of the hallmarks of CFS is adrenal fatigue? people with adrenal fatigue are told to not do aerobic or strenuous exercise. I do walking or yoga only. I am suspicious that many people with CFS actually have IIH but no one has thought to do an LP on them. I know because I was in that track for the longest time and have come into contact with many people with CFS and none of them have had sleep studies or LPs. anyway, one of the things that can occur in IIH is empty sella syndrome, which if it leads to decreased ACTH will lead to adrenal insufficiency. If our hormones are completely out of whack because of the effect of our brains being squashed, then how can anyone expect that hormonal control/management of weight or stress will be normal? in normal people, cortisol levels rise with exercise. If we can't do that, then how could exercise be supported? of course we will "crash" if we try to push ourselves. exercise may actually be contraindicated in IIH, and your doctors should know better!

I actually lost 40 lb after my IIH (in retrospect) got worse, in part because I was so nauseated I couldn't eat. I was not exercising during that time. I was on a vegan low fat diet thinking that was going to help me. I think it probably just made me feel worse. I also think the weight loss was related to uncontrolled UARS, a form of sleep apnea. I gained 8 lb in 4 weeks as soon as I started treating it.

Thank you, my doctors should know better! I am starting to feel better about the whole thing, I can gain and loose 10-15 lbs. overnight I think thats a british stone overnight? I was hopefull that I would excercise and be normal, I guess Im looking for the holy grail of IIH...

After thinking about this topic overnight, I realize that a few more things need to be discussed. I think we all need to understand WHY exercise can be contraindicated in IIH. That way you can come up with an exercise plan that works for you and does not exacerbate your condition.

One thing that may significantly increase ICP (intracranial pressure) is a Valsalva maneuver. This is what happens when you are bearing down to use the bathroom. or coughing, or clearing your throat. a lesser Valsalva may also occur with crying, laughing, singing and shouting. or even just talking. watch your symptoms to see if you think these things affect you. Quite a bit of exercise involves the Valsalva, as in weight lifting, abdominal crunches and other maneuvers. Whatever you do, make it light enough that you can keep breathing deeply through it. do not hold your breath! For this reason, exercise that focuses on the breath, like Yoga, can be perfect for us. Except, the inverted poses (head below the chest) may cause increases in ICP because gravity will increase cerebral blood flow in these positions. So, limit the inverted poses but the standing poses are great, as are stretching on the floor. Make sure you follow the breath rules in yoga religiously; don't hold your breath. There is a form of yoga called Kundalini yoga, and in this form, there is a special breath called the breath of fire. This is rapid deep breathing which will serve as hyperventilation, something which can decrease ICP!

With exercise, blood pressure normally increases. As BP increases, so does cerebral perfusion pressure (CPP). As CPP increases, so does cerebral blood flow (CBF). As CBF increases, ICP increases. So you can see that any strenuous exercise that raises your BP, will raise your ICP. If your ICP is well controlled, you may be able to exercise without restriction. If it is not well controlled, as in perfectly controlled, then exercise may cause spikes of your ICP. It may be best to limit your exercise to walking and some yoga standing poses.

My doctors have also told me to lose weight, with the wrong diagnosis i was given IV steroids 4 times. I was also DX with chronic fatigue syndrome and Fibromyaligia, how with the constant pain and vision issues do they think i can do to much exercise? I was working 40+ hours a week and as active as i could tolerate. Is there something more i could be doing?