"Did I create IIH? Did I bring this on?"

No and no.

I am fairly certain that one of the reasons I have this disease, if not THE reason I have this disease is because I gained weight after the loss of my mother in June 2006 (I was diagnosed exactly 3 years after she died - same date). However, somewhere, maybe on www.ihrfoundation.org, I read: YOU SHOULD NEVER THINK YOU BROUGHT THIS DISEASE UPON YOURSELF.

It is a struggle, but I hold true to this statement. Whether or not I am right about my weight gain being the "cause" of this disease, I refuse to take blame. Whether it was the birth control I CHOSE to take beginning in 2008, or some antibiotic I took, or the allergy medicines I took, or any of the other possibilities I have theorized in my brain, I refuse to take the blame. Here is why: Plenty of people gain weight and do not get the disease. Plenty of people take birth control and do not get the disease. Plenty of people do exactly what we do (and by "we" I mean all of us on this forum and suffering from IIH) and do not get this disease.

It is something else. Even if any one of these things, including weight gain, is a catalyst, I believe there is something else going on.

I just want you to know something, beyond what causes and doesn't cause this nonsense... I know you by your little profile pic here on DS and I know you by your WORDS that you have typed to me and to others while on this forum:

YOU, MonkeyMom3, Khrystine, are a beautiful person.

I know it is really hard to remember that with this disease, when you feel like crap, but it is true. Who the hell cares what this picture looks like>!! It sounds like it was obviously taken at some weird angle! Tell your friend its got to go!! (My cousin does this to me all of the time).

If you want to lose weight, that's fine, give yourself the time to get healthy. If you are not feeling well now, then you must work on that first! Remember it is about being healthy, not skinny, so there is a process here and, unfortunately for those of us with PTC/IIH, the journey is a little bit longer, but you'll get there. And believe it or not, my first bit of advice might sound backwards: START EATING silly goose! Three meals a day, force yourself, just like I am sure you make the kids do!

And remember THIS TOO SHALL PASS!

nicole :)

Riverand

I must be like the weirdest person in the world. lol

I stopped a very strict eating plan and gained close to 70 pounds within a year. I was diagnosed the following year, but I had symptoms before my diagnoses.

I can't blame IIH for the weight gain because I ate like a pig. I know I did. It might have made me hungry, but I chose to eat the food.

The reason I say I am so weird is because.... I need to think I brought this on myself .. Just maybe, if I caused it, Then I can reverse it. If I have no idea where this crazy flippin' mess came from then I feel I can't fight it. I don't feel guilty thinking I could have done this (there is noway I could have known).. I feel hopeful that I can reverse it.

I also believe this disease is connected to genetics. Maybe that's why all overweight people don't have it. All people with MS don't have it but some do.
Another example of genetics is that African Americans are at greater risk of vision loss with this illness. (don't let that scare anyone, it's just a fact and I know that if you are being treated your going to be fine)
I think genetics play a huge role in this disease.

I also look at people losing weight and having improvement or not. Losing weight doesn't help headaches nearly as much as it helps paps.
People without paps may not notice the improvement right away.
One more thing. I also read you have improvement within 5 years of losing the weight. It isn't instant. That also gives me hope.
That is If I can step away from the chocolate cakes =(

You shouldn't feel guilty at all. For 1 you may never know if weight was involved. 2 you couldn't have known even if it was.
Please turn all these emotions into hope.

You are Beautiful!!!!

Betty,

You are NOT the weirdest person in the world! You are my girl! I swear you and I are like two peas in a pod with all of this after-hours research and theorizing!!

nicole :)

Thank you!!! You are my girl too!

Thank you both for your kind words and support. Normally I'm the one dishing it out, so it's nice to be on the receiving end now. I can't begin to tell you how horrible I feel right now. My docs have had me on soooo many meds over the last few years for my migraines, and they warned me that I could gain weight. But, who knew??? Now I just wish I had done more. I don't know what to think right now...but, I do know it's nice to have you guys as friends to walk this path with. Thank you.

Khrystine

MM3

I wish I had some magic words for you, I really do.

Put this illness out of your mind if you can. You obviously were uncomfortable about the picture you saw. (I doubt it was as bad as you view it, we are our worst critics)
I can assure you if you eat 2 oz of lean meat, half a cup of brown rice and as many green vegetables as you want you will lose weight. Of course that leaves breakfast. I ate 2 egg whites and half a grapefruit. 2 snacks a day.. banana's for energy.

If you can tolerate that, (I actually ate white rice and still lost) You will lose at least 10 pounds the first week. No exercise needed. But you will have so much more energy, and if you can use those bands to firm up, then that's all you would need.
They aren't needed though.

Ooops.. I have to get my kids.
But this works with no exercise.

I am not suggesting you need to diet, just trying to help you.
I'll do it with you if you want.

Hey there Khrystine, You went on a little trip there eh? Ok, time to come back home and to reality! You crazy lovely lady.Goodness! How bad was that photo?!Burn it! And any like it.You just dont need that kind of bad in your life right now.
So, you have put on some weight? Who hasnt in their time? Sure, make a (realisic) plan to lose some, but carefully.
You are not the same as most people any more.You must put your good health and how you are feeling on any given day, in to the equation. I have a feeling, it will all work for you. I think you are one determined lady and once you set your mind to it, it shall be done.

Remember, about the weight issue.It is NOT an issue for every one. I was a perfect weight just before i got sick. I put on weight becase of the treatment. And, I lost all most all of it and it still didnt make any difference.

Yes, lose weight for your sake, To make you feel good about yourself again.As for the guilt? Dump it fast! what a waste of time. And it wil only serve to make you feel down. You must promise me to rid your self of this one,Ok?

Good to hear from you tho! missed you! Now go and get un-crazy! Ok, leave a litttle bit there! I like it! Cath.

OMG - you guys are such a great group of people! Everyone just steps up to the plate to offer support and love - I feel so proud and priviledged to know you all!

Thank you.

Okay Betty...I'll try it. Problem is that when I was a teenager (15-17), I struggled with anorexia. (I was 5'7 1/2" and weighed 101 pounds) As such, my metabolism is totally screwed. Now, anytime I try to lose weight, what used to work for me doesn't anymore. It's like my body is pre-programmed not to lose. So, unfortunately it takes exercise for me to truly lose pounds. But, I will definitely try what Dr. Betty has prescribed along with a walking regimen...hopefully I'll still be able to keep the HA's at bay. (Albeit I have a migraine coming on now.) Keep your fingers crossed for me.

Cathy...You are the sweetest person. I truly feel like your family across the seas. Thank you. You always cheer me up...and...for the record....I'm keeping some of the crazy!!! LOL!

Who knows? Maybe I can get my sexy back and treat my disease all in one. Keep your fingers crossed!

MM3

MM3

I'll do it with you, as I have gained about 15 pounds in the last few months. I don't feel as well as I did. Not that I felt wonderful before.
I haven't went this route before now because my family won't eat what I am eating.

If you don't believe these foods will boost your metabolism naturally, maybe just try it a couple of days. 3 at the most. Check to see if it is working. You're right in thinking the point of this lifestyle change (I didn't use it that way, but it is suppose to be a lifestyle change) is to naturally boost your metabolism. The lean meats build lean muscle while the foods work off each other burning the calories up for you. I used to know all the technical terms. I barely know my name now. You are suppose to eat 5 times a day. We are also suppose to drink 100oz's of water a day. I am not going to do that due to this illness. I would say drink 8 glasses if possible. You can also use other carbs besides rice. It suggest good carbs but of course I ate white rice. It's the combination of the the 3, lean meat, greens, and carbs that is important. For breakfast, it doesn't have to be egg whites. It can be 2oz of protein and a fruit of your choice.
The hardest part about this is eating a lot.

Now that I have added all that, the word diet is really bothering me. Please understand this is not a diet. It's kind of like Jamie oliver's food revolution. Eating whole foods that are good for us.
I wish you could see my face and hear my tone of voice. I feel that reads like I am mothering you. I promise you if you could hear or see me you would Know I am not. I am only trying to help you or anyone else that wants to try and lose a few pounds that can't tolerate exercise. I am definitely not an expert on weight loss, this comes from the 6 week body makeover. It worked for me at one point in time and I feel it will work for most. But only if they are already trying or struggling to lose weight.

Again.....You absolutely can't blame yourself for anything. It sounds like you have gained weight since being sick.. before or after in my mind it really doesn't matter. I know we couldn't have known or prevented any of this. If weight loss helps then praise God. If not, then we will feel better in other ways. And if we can't get the weight off, that's ok to. All we can do is try.

I wish you luck.
If you come across a better eating plan, let me know =)

Lets get our sexy back.. lol

NO you can't blame yourself!!!! But I can understand :( When diagnosed eleven years ago, I lost probably 20 lbs and went in to remission for eleven years!!!! Now, I'm probably 50 lbs over weight and have this again. I find it to be such a coincidence for myself - maybe not for everyone - but at least for me. My neuro asked if I would like to work with a dietician - at first i said no - but I'm re-thinking. GOOD LUCK!

Good luck. Losing weight definately made me feel better. I just walked. 10 min at a time 3x a day till I could do 30 min at once, then I added time. I mostly have the tinnitus issue, with head pressure, and the first few days were really hard to do for me. I would come back after 10 min really red and feeling wossy and light headed but that passed with time. I recommend following a diet plan, that is a bit higher in protein cause protein fills you up quicker.

I have so many issues now with exercise intolerance that I just started eating better things and it has helped me a bit. I've found that foods high in fiber keep me fuller longer, thus I eat less mindless junk throughout the day. As far as blaming yourself, I can totally get that, but I think we all probably need to just try to stop doing that to ourselves. (I know it's hard, trust me!) Perhaps focusing on what is to come rather than what has already happened can help with this. I don't know. And as far as that picture goes, tell her to get rid of the darned thing and don't feel bad about it. My friends and I all have a pact not to post any unflattering photos of each other; at least not until we crop out all the fat rolls and other unflattering things that cameras ALWAYS seem to capture. (Haha!) Honestly though, us women are so much more critical of ourselves than others are. Hang in there.