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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