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.
I hope it helps! My neck doesn't do squishy, more crackly, it never did that when I was twenty... sigh...
It's odd that your ears feel plugged, theoretically it could happen if your eustachion tubes are congested and there is a change in atmospheric pressure. The changes in taste really sound more neurological, especially if it's been going on for a long time. Short term changes in taste can point to liver issues.
I once had pine nut syndrome, or pine mouth syndrome after eating pine nuts from China. Everything tasted like metal for a month, it really sucked. I can't even imagine having to put up with that all the time. That must be frustrating.
Hang in there, hopefully the increased dose will help!
!DHEDGE
Pine mouth syndrome. That's very interesting. I bet that was weird.
My taste stuff comes and goes. I can't taste carbonation either which is weird. It feels flat when it's not. At least stuff doesn't taste gross I just can't really taste much of anything sweet. I'd say it's like a 90% taste loss on sweet and 100% on carbonation.
I have brought this up to more than one doctor and they both said the same thing-made a joke about how not eating sweet stuff is a good thing(fro my figure) and until I am severely underweight from not eating, it's nothing to worry about.
I don't ever lose weight even when I got literal weeks without eating a full meal so doctors don't seem to think this is a concern.. I have the metabolism of a hibernating bear (possibly literally There is a hibernation hypothesis with ME that is interesting...)
Yeah the squishiness in my neck] is not constant, like a gurgle. Not only can I hear the fluid I can feel it moving. It is a bit creaky too but more weird fluid stuff. The base of my skull hurts a lot too-kind of like its in a vice grip.
I have some odd ear shit. I have ridiculously loud tinnitus that is constant but it does change (different pitches sometimes I can heart my heartbeat in my ears and not just when I am close to fainting).When my ears feel blocked it usually makes the tinnitus worse. this usually happens when I get the vestibular migraines-but I haven't had one yet. At least it's only positional vertigo right now and only on one side. Ironically the side that feels less blocked up seems to be giving me the most trouble.
I get random bppv often-multiple times a year but it usually only lasts a few days. I also get motion sickness easily- even watching tv.
But hey at least they are upping my dose of rapamycin. I hope it continues to work well. My muscles are feeling better right now and it's raining so that's pretty damn good. I swear I am a human barometer-been once since I was a kid.
You have so much going on you poor thing! I guess you have to take any win you can get, and I'm glad to rapamycin seems to be helping. Tinnitus I know all too well, my ears always ring. Some meds make it worse. Probably from too much noise exposure in the Army, but they will never admit anything was their fault. lol
Pine mouth sucked, I love pine nuts but I'll never eat one again after that!
You really do need a decent doctor... One's who make jokes about how taste loss will help your figure? What an idiot of a physician, must have graduated with Dr Nick Rivera on the Simpsons....
"You really do need a decent doctor... One's who make jokes about how taste loss will help your figure? What an idiot of a physician, must have graduated with Dr Nick Rivera on the Simpsons."
Yeah or the same school as the dr from Family Guy. Yeah that was pretty bad. Not as bad as some of the other women I know with severe chronic illnesses who have been told by their doctors to "just get laid". Not in those exact words, but I know several women who have experienced that. Must be the leftover belief of women being "hysterical" . It would be nice if orgasms cured us but that is not reality. smh
Tinnitus is awful. My dad has hearing loss from his time in the National Guard. He gets a check every month from the govt. It's not much- like a couple hundred dollars now I think. He doesn't have much rigning, mostly high frequency hearing loss. You'd think the govt would do everything they can to protect soldiers, but well I am sure you know way better than I do that is not the case.
So sorry you have to deal with it. Tinnitus is a bitch. I have no idea where mine came from, but there is a new study indicating that at least some forms of tinnitus are from some type of nerve damage that is hard to test for because it does not necessarily cause hearing loss (that we can detect).
Human bodies are strange that's for sure.
On a positive note about 8 hours after taking rapamycin my muscle stiffness started to fade. I also have been experimenting with nicotine patches. Long story I will share more details later if you want(I am not a former tobacco smoker the nicotine is purely medicinal and low dose). Nicotine oddly helps my POTS and OI a little bit. You'd think it would raise my hr but it doesn't. I also feel a bit more stable when upright (blood pressure change maybe?) For me it's also the best allergy medicine/decongestant I have ever had. It helps my asthma too, like taking a hit from my inhaler.
Nicotine effects acetylcholine and can help switch into "rest and digest" (I am not taking huperzine a now that I am taking the patches). I know of some LC folks who lost their sense of taste/smell and the patches brought it back. My first round with the patches helped my sense of taste and that was a big surprise to me. I have no idea how /why this happens.
The patches are a short term thing. This is my second round and I am starting to be able to taste carbonation again. Last time I had the patches on for about two weeks and my taste came back (I have somewhat muted taste in general. I often need 2-3x the seasonings etc compared to regular people). Last time my taste was enhanced like when you get the munchies. I started using less seasonings and could taste everything. I love spicy food and had to tone it down a notch when my taste came back last time.
Interesting...
I would think the nicotine would up the HR, but I can see it helping the asthma. I'm not sure how it helps with the taste, fascinating... There has to be some reason for that, research has yet to figure it out or the mechanism behind it. Do you like hot peppers? They can help flavor quite a bit, but I'm biased from having live in places that hot chili peppers are in everything!
I'm not sure why it affects taste. There are lots of anti inflammatory stuff happening with nictine. It has been shown to help colitis patients. It certainly helped kick start my digestion too.
The HR thing I don't know why it is slightly decreased exapct maybe it's helping the sympathetic/parasympathetic balance. Nicotine has vasodilation and vasoconstriction effects and these changes in blood pressure may be helpful for my POTS. I also notice it is similar to huperzine a where it will "kick in" when I am standing and start to lower my hr after a few second/a minute or so if I am standing.
I am one of those people who puts hot sauce on everything and love spicy foods. Thai and Indian are some of my favorites.
I lived in New Mexico, where if the top of the roof of your mouth doesn't go numb it's not hot! I love spicy and it's never too hot!
!lol
I hopefully pray it will work and cause a massive change that will bring comfort to your health my friend. Be strong 💪. I was even thinking what about if you can go for surgery?
Thanks. unfortunately with my illness(es) there aren't any treatments. I have one of the most debilitating chronic illnesses and doctors dismiss it (not just me but millions like me). I can't get any medical care or anyone to take me seriously. I am too sick to fight and keep trying.
I am not even well enough to get an MRI ...
Oops 🥺🥺 so sorry to hear about this
Please, try and have a thorough check up all over your body. To identify how you can be restored to your taste.
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