For the past month or so, for the most part I've been doing better. The headaches were not as often or severe and I could manage with them on my own. My PCP started me on Diamox to see if I was allergic to the sulfa or if my "rash" was from being in the sun on Diamox which I didn't realize I wasn't supposed to do and of course was on vacation in Mexico/California. I've been on the Diamox for over a month and have not noticed a single rash, I was on such a low dose just to be safe...and now we're going to up it. I'm on 250 mg a day right now. The past week (maybe week and a half) my headaches have been getting worse again. I feel like my pressure is up, but I'm almost afraid to tell my neuro because she will send me for another LP which means taking off of work (out of sick days=no pay) and going through the horrible pain. The last LP I had left me with a horrible taste in my mouth.....It was a two hour procedure and very very very painful.
I'm a member of an online support group for pseudotumor on dailystrength.org. If you are not a member, I highly recommend joining as I've found some wonderful friends, received some great support and advice, as well as being able to provide others with my own personal experiences. The past couple days, members have been posting regarding pseudotumor diet in order to reduce headaches and other symptoms. I'm still relatively new to this dx as I've only had it for about six months and on my good days I still pretend I don't have it (wishful thinking I suppose) which means I didn't really know from any of my doctors that we are/were supposed to reduce sodium intake. I know it's a given that we're supposed to eat healthy if nothing else to treat our bodies right, but geez. I took a look at a few websites and it's going to be really difficult to follow the diet. I know I need to lose weight and that will surely help, but geez, I have never had to watch what I ate before (ie glucose, sodium, etc.) and as it is I'm not one to suck it up and cook for myself. So, other than my goal of losing weight (which I've lots about 10lbs in three or four weeks), I really need to work on the foods that I'm putting in my mouth. So, I guess instead of focusing on losing weight, I will focus more on what I am actually eating as that will help the weight issue as well.
What a hassle it is going to be for me to try and take better care of myself. I've tried to do it before being dxd, and now of course I have a much larger reason for doing it. I know that I can do it if I put my mind to it, so I've got to focus on that.
We can do whatever we put our minds to, but yes, we really DO struggle with it. I am here for you, and I hope that all of you are here for me. Have a wonderful week to my family and friends (and whether I know you or not, you too)!
Together, we can do this!
I've been using livestrong.com to track everything that I have been eating since I started doing the bootcamp at my gym. You register for free and you input your food into the dailyplate feature. It really has helped me realize how consistently I go over in sodium, cholesterol, and calories. Maybe it will help you too with the pseudotumor diet. Sadly, the only way I have had any luck staying within my bootcamp eating plan is to cook at home, which is so hard after a long day. I have found some really great and easy recipes though. Let me know if you want some!
ReplyDeleteThanks for the suggestion, I'll definitely look into it! It'll be nice for the help on figuring out how much sodium I should have and all of that. And yeah, I hate cooking for just me, but it'll probably be a little easier when summer is here cuz I won't be pooped from teaching! :) Miss you girlie! Love ya!
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