Even though, I have been on a well controlled diet with acceptable levels within range for many years, every now and then I still struggle. AS I have talked about in the past 3 posts and make reference to through out my blog , as a teen I struggled immensely and suffered from High PHE level syndrome for years. High PHE level syndrome is prolonged levels in a high range and the symptoms brought on by the high levels.
Now when I have high levels i am very sensitive to the slightest change and I can recognize it in my body with in days. I can feel it the same day if I have eaten to much protein.
I have been asked a lot lately what id feels like. So I thought id share a post today about what high levels someone may experience and how it feels to me.
Headaches- Different from tension headaches or migraines. When my levels have been to high and I have a high level headache. This headache feels like a full head pain. Like being knocked on the head. Strong behind the eyes similar to a sinus headache but wider. It radiates at the top of my head and it makes me feel tired . Sensitive to light. I tend to hide out in my bedroom more .
Brain Fog- I use this as a broad term to cover many different feelings. For me having brain fog means that I have trouble focusing , retaining information, finishing trains of thought. simple problem solving. It also effects my ability to learn . I also have problem recalling past information and facts. I also have a very hard time with math.
Behavior- I get agitated quicker. Overwhelmed and irrational. I feel angry for little or no reason. Or I cry easily. I take things the wrong way and become very emotional. I call it feeling crazy, and all over the place. Like my head is spinning a mile a minute around me I cant keep up.
Mental state- I have struggled with depression for 7 years. 2008-2015. Due to multiple injuries and circumstances but made worse when my levels are higher. Also when my levels are high I have anxiety. Mostly about driving or being alone. I hate doing things alone or going somewhere alone. I wont drive certain distances, or go out after 3 and not after dark either. I get panic attacks too.
Verbal- I tend to ramble more, my writing is effected in such that i am more repetitive . Friends and family can tell just by talking to me that i am off or not making sense. it is like I have a harder time articulating what I mean to say. it makes sense in my mind but dosent come out the way it was in my head.
Fine motor skills- I find my reaction times are effected and my reflexes. They feel impaired.
Physical- I find my chronic pain is increased . It feels like an all over pain . My muscles feel heavy and inflamed. My joints ache. I feel like muscles are pulled or ripped. I have a very hard time relaxing.
When you are feeling like this it can be very hard to pull yourself out of the merry go round . Thankfully I have a wonderful support system and am apart of an amazing community and have built friendships and relationships that have gotten me though and held me up when i have fallen and helped me find my way again. I know with my friends and family and my team behind me I can get back on track and I will !
Discover more from I am PKU Strong
Subscribe to get the latest posts sent to your email.

Thanks for explaining what its like on the inside when levels are off. As a sibling to a PKUer I have seen the emotional side, I can always tell because my sibling is more emotional and rather short with us for no apparent reason. Seems like there is a lot more going on under the surface too.
LikeLike