Sunday, April 29, 2018

IIH Update


Hello, friends and family! I have decided that it might be time for an IIH (Idiopathic Intercranial Hypertension -- AKA pseudotumor cerebri) diagnosis update. I feel like I’ve come to a place that I’ve moved past the initial shock of it all and have a clear enough mind to do the research and get a better grasp on this condition than I did before, and I’m also in a place where I’m not drowning in frustrations over it as much anymore. Because of the combination of those two things, I feel more prepared to give an update and share my progress.

As of the 20th of April, I am FINALLY seeing some improvement, and I’m very proud to say it! My neural ophthalmologist said that he’d never seen my optic nerves looking so good. This doesn’t mean they were perfect, by any means, but, they weren’t endangering my vision like they were at my appointment at the end of February.  We are hopeful that if I can keep up this forward momentum I’ll be able to get off the Diamox in August at my next appointment. This all hinges on one thing though – weight loss results.

Some of you might know that I looked in to trying the keto diet at the beginning of the month (beginning of April, if you’re reading this at a later point). I have been trying to stick to a loose interpretation of it where I cut waaaay down on carb consumption to only a few times a week, as well as cutting back down on dairy products. I don’t drink milk as much as I did before but I do eat certain snacky items like cheese and cottage cheese a lot to keep up my protein. This part is mainly because I’m not a nutritionist and have no idea what I’m doing, but I do have horrible anxiety, so without a doctor telling me to cut back on protein more than I am, I can’t bring myself to do it. I sit there and worry I’m doing more harm than good, and that’s not what I want to do. From what I understand, keto is a moderate-protein diet, low-carb, and high-fats. The fats are where I’m having to try the hardest. I eat half an avocado a day, cheese as a snack, whole eggs, and lean towards olive oil as a choice in foods that incorporate oil. I’ve been trying to incorporate those but it’s a big struggle and I can’t have nuts or coconut so those options are out for me. I’ve also found that foods high in vitamin a are a trigger for me for my IIH symptoms, which include a lot of the healthiest veggies, so I haven’t been able to incorporate those as highly as I would want to in normal circumstances. Switching to a lower-sodium diet has been a great help for me though since that’s also another trigger for me (and is something that impacts a couple of my medications).  I did all of this strictly for 3 weeks and saw an 8 lb loss and felt great! In the week after, I’ve slacked off and gained some back, but I’m really motivated to get back to this forward movement again.

I know that there are a lot of opinions surrounding what is the best weight loss path to take, but I’m no longer taking suggestions. I’ll just flat out say that. I am often told how important it is to incorporate exercise, but I’m having to adopt the “80% nutrition, 20% exercise” mentality nowadays. With this diagnosis I have developed exercise intolerance and I can’t make it through even 10 minutes of a modified workout. I’ve tried multiple times and nearly pass out from weakness. My heart rate drops and I get dizzy and nauseous and fatigued to the point that I’m becoming ok with just doing light cardio (this has happened for a while, it’s nothing new for me). Some days it gets really frustrating, but others, it’s manageable. I try to do 30-minute walks 4 times a week and I feel like weight loss is possible for me if I can just focus on the nutrition. Strength training gives me massive migraines, so those are out, and like I said, it’s becoming ok. I’m often told that I can just push through it if I want it bad enough, but I view it a little like this – if I were to push through and just take pain killers for the headaches, it’s just like putting a band aid over a cut that I intentionally made, and what’s the point in that?! Why cut yourself in the first place?!  So, when I tell you that I’m not interested in a particular workout program, it’s not personal. It’s what I have to do for a while, and what my specialist has told me to do – to focus strictly on nutrition and just incorporate light cardio.
Like before, I know that my details are slim, but they’re the best I’ve got. If you have any questions, feel free to ask. I don’t mind talking about it anymore, especially if I know you’re just trying to increase your understanding and that you care. I also can say that if you want to give me a “keep up the good work!”, that’s perfectly acceptable as well (insert a winky face here, ok?!)
I hope this post finds you all well!

-          Rebecca

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