- CASE FILE
Most foods are too sweet, making me feel tired and my mouth tingle. I can’t even eat celery and I am to the point that all food including wa
ABOUT THIS CASE FILE
My known health issues are obstructive hydrocephalus (caused by a lesion in my hypothalamus), Lymes and we suspect POTS. My current symptoms are a constant headache (since 2003), back pain (since 2009), fatigue and lack of energy, constant hunger, short term memory issues, dizziness, pressure/pain behind eyes, neck stiffness and last but not least, an inability to eat most food because it’s too sweet.
Most of my symptoms I believe to be caused by a combination of my known problems. I have tried several different treatments for Lymes with no success and have had many issues with my hydrocephalus and my pressure not being right for the last few years. I used to live a normal, active life, but as my symptoms have worsened over the last couple years, I am just a shell of the person I used to be. But, my hope is that if I can maybe get my pressure to a normal place I will be able to start figuring some of this out.
Of the many doctors I’ve talked to, the one symptom they never know what to tell me on is my issue with food. My tiredness and constant headache started after a third ventriculostomy I had performed in 2003. I was tired all the time, but nothing severe and I also remember being kinda hungry all the time, but again nothing severe. In 2015 I noticed the tiredness and hunger getting worse, to the point that I couldn’t just ignore it anymore, so I decided to try giving up sugar to see if it helped with my symptoms.
For two months the only sugar I consumed was in fruit (I even stopped eating mints and gum). I didn’t notice any difference so decided to go back to eating sugar. But, when I went to eat a cookie, it was way too sweet. I was bummed because who doesn’t like to eat dessert, but figured it was okay because I don’t need to eat that anyway. The problem was, it didn’t stay with just cookies and desserts. As time went on and the less sugar I ate the more foods I couldn’t stand to eat.
Some people have told me to just eat it anyway and maybe I just need to get my body used to it again, but they don’t understand how I feel after eating something too sweet. For the first second or so I can taste the food as it should, but then I get hit with this intense sweetness that is not pleasant and shortly after my tongue and mouth get tingly. A feeling of instant tiredness comes over me (which I’m already tired all the time, so this just makes it worse) and I feel super gross in my chest. Plus the feeling lasts most of the day. So, it’s not worth eating food that is too sweet because it makes me feel awful for a prolonged period of time.
I still crave sugar every day, but can’t eat it. I am to the point that the only fruit I can eat is avocado and the only vegetables I can eat are broccoli, cauliflower, zucchini, onions and garlic (green beans are borderline). The weird thing is that it’s not even just food I haven’t eaten in a long time. It’s food that I eat every day and gradually I get to a point where it was too sweet to eat. This past March was a recognizable point where I randomly lost a bunch of food I was eating pretty much overnight. At this time I realized that all food tastes kinda sweet and makes my mouth tingle, it’s just not to the point of other foods, fortunately.
The one thing I know is that with time it continues to get worse and frankly I don’t know what I’m going to be able to eat if this continues to happen. I used to be able to dump salt on some things that were kinda sweet to mask the taste and affect, but ever since my last shunt adjustment eating salt hurts my eyes and makes my headache worse.
I got tested for allergies, but have none to food and no one has had any ideas of what could be causing this or how I can fix it. The worst part is that I’m constantly hungry and I’m talking like when’s dinner level hungry, so I eat more frequently than most people. If I could take a pill for all of my nutrition so I wouldn’t have to anymore I would. But unfortunately, that’s not an option.
I don’t know what to do and am losing hope that things will ever change.