It's week 4 and my dosage will be increased this week (just waiting for the shipment).
Normally I take it with breakfast but I am having issues eating these past few days. This is not related to the medicine except I need to eat a really big meal with it or it makes me feel sick for a few hours. In general I struggle with eating on multiple levels.This happens sometimes It is one of those intermittent issues I deal with. There is another issue I am dealing with too that comes and goes. I will get into that on a minute. I wonder if these things are connected somehow.
Lately it is I am feeling full after like two bites (I mean this literally). I also have no desire to eat. I can't explain it I just don't want to really eat anything. Feeding myself takes a lot of energy and when this happens I kind of "don't bother' eating most of the time. Usually I also don't really feel all that hungry when this happens (though sometimes I feel starving and still can't eat-wtf)
This is also happening at the same time I am getting taste distortions. I can't taste sweet or carbonation that well/at all and stuff tastes more bitter. I can taste salt garlic and other stuff.This may be contributing to my lack of motivation to eat but it's not just a motivation thing. Ironically I was just talking about how easy eating had become lately then this crap starts.
At least stuff doesn't taste rancid. That happens sometimes and then eating is like impossible.
In addition to this I also am have weird headaches and inner ear stuff. I sometimes get these pressure headaches at the base of my skull/neck. I don't know how else to describe it expect it feels like the base of my skull is swollen like I can feel pressure internally in my skull (sometimes I feel this in my whole head this time is is just in the base of my skull). I also can hear lots of weird squishy noises in my neck.
My ears also feel blocked/pressure and kind of like they have fluid in them. This isn't like a sinus infection/ear infection. I am also experiencing very mild positional vertigo.
These are all some of my"traveling "symptoms. That's what I call them any way. Random symptom flare ups that come and go for no (apparent) reason-like an annoying in-law who overstays at your house.
This is the part where most of my able bodied allies would make suggestions such as "why don't you see a doctor and get checked out?"(my chronic illness /disabled friends don't really ask these questions because they know doctors are no help for anything complex and will likely just call me "crazy"). I have sought medical treatment/answers for all these things. The neck head pressure thing is basically completely dismissed as tension headache or something (maybe it is?) Regardless they don't actually treat it. For the record tylenol does not help.
My neck is the only thing on me that is "super flexible" (except my jaw and knee but both those joints go off track. I don't think a neck can do that). That can't be a good sign, but literally no doctor has ever cared (even when noting my neck is "looser" than normal) I am too sick to fight for care.
The eating issues I can never bring up because even with just taste distortions it's automatically assumed the issue is psychological.
My best guesses: The feeling full really fast is probably mild gastroparesis. The taste distortions are neurological or maybe GERD related. I don't have any heartburn type issues lately but that is always a possibility.
The head neck thing-I am not sure. Is it maybe some sort of spinal fluid /brain fluid that is building up and getting into my ears and my neck (I don't know if that is actually a thing. I am just making guesses. That's how it feels)? Some weird arthritis that makes squishy/grinding sounds? Brain inflammation?
These symptoms are on top of everything else I deal with on a daily basis. It's too much sometimes.
This is a long winded post but I am upping my rapamycin and hope it can help control my pain all week instead of wearing off. More updates soon. I'm exhausted.