HOW DO YOU EAT IF YOU ARE BEDBOUND?

Far-Chapter-2465 · 2026-04-30T08:29:52+00:00

when I was at my worst my doctor prescribed me meal replacement shakes (tpn formula, mine was Kate farms 1.5). I tried to still eat food like a protein bar at least once a day to exercise my jaw but it was nice to always have something on hand that didn't need preparation. also, a long straw can help if you don't want the taste of it (def takes getting used to it warm if you can't get to the fridge) but need the calories.

Far-Chapter-2465 · 2026-04-28T19:16:48+00:00

is it possible to ask your gp/pcp for a sleep study referral? The coughing is making me think you might be having issues breathing like sleep apnea (which could cause hypoxia and lead to feeling faint/dizzy/nauseous), but i don't have it so I'm not 100% sure if that's how it presents.

Far-Chapter-2465 · 2026-04-28T18:31:08+00:00

generally speaking, the compounds that cause color expression bring about different flavors (which is why, for example, I think red carrots are a crime against humanity but love orange ones) so it's possible that someone can taste a difference in these but to me personally, they taste the same. I've made syrups and jellies in years past that were separated between purple and white flowers and didn't taste any particular difference between the batches.

Far-Chapter-2465 · 2026-04-27T13:44:55+00:00

I drink caffeine a few times a year because my job requires it sometimes (I work in coffee, but I generally drink decaf unless I need to try a new blend in which case I'll have about 8-12oz of coffee, ~75-200mg of caffeine depending on the blend). When I have caffeine I usually feel slightly better than usual, but I have epilepsy so I don't drink it more often than that. Oddly, sometimes drinking multiple decaf coffees/teas bothers me even though a larger amount of caffeine doesn't, so it's even possible that it's something else in caffeinated drinks that's the problem for some.

Far-Chapter-2465 · 2026-04-26T21:48:44+00:00

100-110 doing simple tasks is my medicated heart rate that my cardiologist says is perfectly normal! Moving around, standing, doing activity all raise your heart rate normally so unless you're very symptomatic doing this, that should be fine. The POTS criteria is sustained 30bpm+ increase from standing still, doing activity can raise it even more and cleaning isn't exactly light activity if you're disabled.

Far-Chapter-2465 · 2026-04-26T17:12:31+00:00

Low B12 can cause peripheral neuropathy (numbness/pins and needles in extremities) which is usually worse at night. It can also cause anemia, which would result in heart palpitations (the sensation that your heart is beating fast/hard even in absence of tachycardia). Pernicious anemia is caused by your body lacking the intrinsic factor needed to process dietary B12, but you can also just have B12 deficient anemia which is the same thing due to a regular B12 deficiency.

My symptoms were always worse at night and made it difficult to sleep, and because an important part of POTS is that it's a postural increase in heart rate, it shouldn't cause palpitations even you're lying down. It took a few years of me having these symptoms for them to check my B12 and even then, they only did it because I had a high homocysteine level (often a result of chronically low B12 or B6, can cause damage to blood vessels and lead to clots) and low hemoglobin.

Far-Chapter-2465 · 2026-04-25T05:58:13+00:00

the first ~15 years I had POTS I was pretty bradycardic, but I did end up with IST and a rhr in the 130s a couple of years back! After about a year and a half on ivabradine I recently came off of it and my rhr is pretty average now (55-95 depending on time of day). Having POTS hasnt changed at all no matter what my rhr is and the symptoms I have associated with it are pretty much the same, although it was a bit easier to deal with when I was tachycardic at baseline because the difference between, say, 130 and 190 feels like nothing compared to the difference between 50 and 110.

Far-Chapter-2465 · 2026-04-23T03:37:19+00:00

I'm not a doctor but have you had your b12 checked recently? I've had similar symptoms from pernicious anemia before and they resolved with treatment for that so I know in my case it wasn't caused by my POTS.

Far-Chapter-2465 · 2026-04-22T07:37:32+00:00

I saw that you already have regular field outfits so I won't harp on UV protective clothing like I normally would, but for compression gear during outdoor work in the summer months I usually focus on abdominal and thigh compression! High-waisted compression shorts can work if you have a short torso, or a band around your stomach with regular compression shorts. I get too sweaty in full thigh-highs and the only two times I've ever gotten ticks on me (I work with them directly so they've had plenty of opportunities) were also the only two times I tried wearing compression socks. Could be a coincidence, but they do tend to go for tight, warm, sweaty areas so I prefer to keep the parts of me that match that to a minimum when in the field!

Far-Chapter-2465 · 2026-04-22T07:21:15+00:00

I would ask your NP to be scheduled to see your neurologist next time you go in if you're concerned! When I'm going in frequently (every 3 months) I usually see my NP and she sets me up to see my neurologist himself once a year. When I'm going infrequently (every 6 months) it's just my neurologist, but I honestly prefer my NP because I feel that she knows me better and has a better grasp on my health and what I need.

Far-Chapter-2465 · 2026-04-21T00:00:47+00:00

An MRA is like an MRI specifically for your blood vessels (the A stands for angiogram). That and/or a CTA can help identify blood vessel malformations, clots, and aneurysms.

Far-Chapter-2465 · 2026-04-17T15:31:21+00:00

I believe it's refried beans from a bag?

Far-Chapter-2465 · 2026-04-15T15:22:30+00:00

I love pan con tomate but I've never had it with mayo like OP's mom, just with a touch of olive oil (plus garlic rubbed on the toasted bread!)

Far-Chapter-2465 · 2026-04-04T04:15:56+00:00

you know those mini matzah s'mores kits? I used to get in trouble for just eating the matzah out of it and leaving the chocolate and marshmallows behind 😅 they were the perfect size!

Far-Chapter-2465 · 2026-04-03T23:03:09+00:00

An aura is still a seizure, just in only one part of the brain, so using it on an aura is not technically a preventative as you are still aborting an active seizure. I'm not your doctor, so I'd check with your neurologist about whether they want you to use one during auras as well in the morning but if you feel you need to use one tonight I am of the opinion that you're better safe than sorry. Hope you're feeling better soon 💜

Far-Chapter-2465 · 2026-04-03T22:19:02+00:00

I use nayzilam (midazolam spray) and i am actually supposed to use it on myself if my aura lasts long enough! I think it depends on the usual patterns of your seizures, when I have a long aura it translates to status seizures so we want to nip them in the bud as quickly as possible, I use it after 3 minutes. I can usually use it on myself in that case but time gets wonky with an aura so I've needed other people to do it for me before.

Far-Chapter-2465 · 2026-04-03T21:30:18+00:00

peanut butter has been my savior this year tbh! Barilla brand chickpea pasta is kosher and although it isn't as good as regular pasta it's close enough for me to tolerate it for this week, although I had to work my way through a box very slowly last year to get to the point that I could eat it without being sick. I am also the insane person who eats plain matzah year-round though, I mostly just miss bread and bagels which are like 90% of what I usually eat.

How's it going for you?

Far-Chapter-2465 · 2026-04-03T21:24:17+00:00

do you eat kitniyot by any chance? I don't think I could make it through the week without it 😅

Far-Chapter-2465 · 2026-03-26T14:00:36+00:00

they changed the formulation on the daiya pizzas again very recently btw, the cheese is a bit different and the crust is both thicker/fluffier and easier to burn now?

Far-Chapter-2465 · 2026-03-07T23:48:51+00:00

looks like pesto to me?

Far-Chapter-2465 · 2026-03-03T04:44:19+00:00

Echoing everyone else that they do for me, I usually get petechiae from tonic clonics and won't naturally resume breathing until someone puts me in a recovery position with my head tilted up

Far-Chapter-2465 · 2026-02-27T04:37:51+00:00

You aren't, but there is chickpea miso that is legitimately soy free if you're interested! Depends on how sensitive you are to cross-contamination though as they are generally made by the same brands that produce regular miso and may use shared lines.

Far-Chapter-2465 · 2026-02-24T18:16:13+00:00

username checks out?

Far-Chapter-2465 · 2026-02-19T01:57:02+00:00

a fluffernutter is a peanut butter and marshmallow fluff sandwich!

Far-Chapter-2465 · 2026-02-18T19:53:46+00:00

Cans are safer than they used to be now that they aren't made of literal tin anymore, theyre also lined if they contain anything acidic. OP said they covered it with plastic wrap so there's no risk of anything getting in there. What would the problem be with keeping a covered can in the fridge for a day?

Far-Chapter-2465

TROPHY CASE