Good Morning all,
Just wanted to share this with you. I went to my Dr. yesterday, my primary physican, and we of course discussed my weight issues. I was really surprised when he told me that he had read and article on IH, that said that the disease my be the reason for the weight gain. That being said, he still told me that becuase they still don't know why it is causing weight gain, we still have to do what we can to take the weight off, which I have been trying to do, but seems like I can lose a few pounds but then it comes back.
It is another battle in the efforts to keep the pressures low. But was thrilled to hear him at least say that it is the disease that is causing the weight gain.
I was about 15 lbs overweight when I was first diagnosed, and now, well I am truly ashamed to tell you how overweight I am.
The trouble with trying to lose the weight is that you have so many factors to fight. First of all, most days I can barely manage to get my house work done, dealing with the headaches and all that come with them, the swooshing, the pain in my neck and back, and since my last round of messed up LP's which has been almost 5 yrs ago, when I stand to do dishes or fold clothes, my muscles in the hip and back area, seem to lock up and causes extreme pain. So how is a person supposed to exercise when it causes more pain.
Another problem is I stay nauseated most of the time, and really don't feel like eating, but am told I need to eat at least 3 to 5 times a day.
I don't know the solution to these problems, most programs that they suggest like Nutrasystem, HCG, etc.. is so expensive, I can't afford them. But am going to start weight watchers next week, so hopefully I can make some progress. But if it is the IH causing the weight gain, am I fighting a losing battle????

LaDonna, I'm in the same exact position you're in. My weight was perfectly fine until they put me on steroids, and then it went up, then they kept adding on medication after medication, and although I have continually voiced my concerns about it, they sent me several times to a dietician, who then told them, that it was the drugs and the IH, and not my eating habits causing the weight.

The first shunt I had which was an LP caused permanent damage to the nerves in my back, which means I can't do the exercise necessary to keep the weight off. I am very strict with my diet and the last time I saw my Neurosurgeon, I talked to him about this. He told me that the problem was that my metabolism had been altered by my condition plus the steroids and other drugs. I have since been to my GP and again spoke about my weight, he has referred me to another dietician, who I see next month, and hopefully she will be able to help me finally get on top of the weight issue.

It is annoying when you know the weight gain has been out of your control, and you have tried everything to prevent it but it doesn't work. What's even more frustrating, is that people look at you and automatically assume you are a big eater who doesn't care about their weight. I never used to worry about what people thought of me, until I put the weight on, and then realised that I was judged for it.

If the Doctors can find a link to IH, and metabolism which leads to the weight, I think that would be half the battle for us. I have often said that I thought the weight comes with the IH and not necessarily the other way around.

That IS good news! My neurosurgeon and neuro-opthalmologist have always disagreed about weight, but it's nice to know others are coming around. Admittedly, I've always been a little overweight, but I've gained almost 100lbs since diagnosed w/ PTC.

I worked w/ a physical trainer and dietician for about a year to increase my metabolism, and finally lost about 50lbs. Unfortunately, all the activity made my headaches worse and the medication they added put the weight right back on. They told me your body goes into starvation mode and holds onto everything below 1200 calories a day, so I've done the 1200 calorie diet, cut processed food, and still haven't had any luck. My thyroid and everything esle seems to be ok, so my primary physician tells me to stick w/ it and it will eventually all come together..it's really frustrating though. I haven't had anything but organic fruits, vegetables, and lean meats for months and can't even lose a pound a week.

I think the limitations on activity are the hardest. They found out that I developed a Chiari Malformation, so I'm not allowed to do weight training, core work, intense cardio or anything. It's really difficult to build muscle and burn calories, when you can only ride a stationary bike for 5-10 minutes at a time!


I think you're right Heidi, we may be a lot better off if they can find a link between IH and metabolism.

Sorry to write on such a dated post but I have a question about the restrictions on working out witha chiaroscuro malformation. Does it have to be a certain size to have the drs give you limitations?  I have one as well but have never been told anything about activity restrictions. I am very sedentary but am gaining weight and would like to try something to lose it before it becomes a bigger problem. I have always been relatively thin until now. Recently I stopped working due to the ptc and have mostly been bedridden. As you all know, any increase in activity makes my pain much more severe and usually results in nausea and an increase in my visual disturbances. Was hoping to find some suggestions for minimally aggressive exercises. Bending and lifting are obviously out.

I was told low impact exercise was my limit with the Chiari..no core work or anything that causes strain. I'm not sure how much that depends on the extent of the malformation, so would check with the doctor before starting any programs. I started a chair yoga for chronic illness class, but it takes very little movement to increase my symptoms. The practitioner said I would be able to increase movements as my body adjusts, but it's been very frustrating! Unfortunately, I think it's just trial and error for everyone. I gained a lot of weight after diagnosis too, so understand what you're going through..hang in there and just do what you can!