#chronic dizziness

[bugtoast]

Happy disability pride month

[abibliophobiaa]

i’m trying to have rwylm posted tomorrow, but i am feeling so sick this weekend, and i have my big drs appointment this week, and the rest of my birthday plans this week as well. sorry, all.

[evanoxvt]

Just another chronic Monday.

Man today feels rough. It started just like most days recently. I woke up, let my dog out of my room and went back to bed. Idk if I slept or not but stayed in bed until 10 something. I got up, fed my dog, took my meds, and ate some food since my grandpa made food.

After that we went outside to watch a neighbors tree be cut down. I wasn't feeling well so I came back inside and laid down.

I'm now realizing I wasn't feeling well bc my body wanted me to stop sitting and go lay down. I'm a little dizzy atm when I try to readjust how I'm laying or turn my head it gets worse. Good thing is I already know to just stay laying and it'll eventually pass.

I'll probably be able to have short bursts of sitting up or walking around a few times today in between 1-2 hour laying periods.

It's just another day in the life of chronic illness.

[enbycrip]

POTS life - loading up on salt capsules before you take a bath and keeping a very solid grip on your grab rails getting in and out.

[th3-r4t-k1ng]

So, I've been struggling with random bouts of dizziness for the past 3 and a half years

we still know next to nothing about why it's happening. My doctor says its most likely chronic vertigo.

The last few years have been a massive shift, i randomly get dizzy without much of a reason. My absences at school have sky rocketed, i cant do some of the things i loved to do as much or at all anymore, and i've had to skip out on hanging out with friends as much.

I feel like a burden to my friends, families and partners, its so frustrating and i dont feel disabled enough??

my parents keep telling me to change my diet by like cutting out stuff like sugar, be more active, especially the last one. Im a big kid, so theres a lot of blaming my health issues on my weight.

I get the solutions , but its so hard to be active when the world will sometimes just start spinning around you, and i've tried multiple diets. Nothings working.

Im frustrated as hell with everything and im just ranting and looking for advice???

im just struggling.

[evanoxvt]

PLEASE, PLEASE READ THIS!!!

I constantly have people telling me X thing is so basic that I shouldn't complain, but it really does takealotmore steps to do than normal people realize because they don't run out of energy from simply sitting up. They don't run out of energy from "simply cooking some ramen" and they ure as hell dont need to lay down again because they don't run out of energy from "simply" going to the bathroom. FFS, life isn't simple, most people just have the energy to mentally skip considering the majority of the steps normal things take.

Early this morning I got up, to walk maybe 10-15 feet to the bathroom (really if I wasn't dealing with fatigue right now I'd count the steps it takes to go to get to the bathroom from the room I'm staying in rn). After using the bathroom I had to lay down again. You might think it's because I was sleepy because of the time but in reality it's because I almost fell down while walking both to and from the bathroom and it took all of my "energy" to "simply use the restroom", as a result I've been fatigued most of the day because I spent the extra energy making sure I didn't fall down while walking those "measly few steps".

Normal people will never understand just how hard it is for disabled people to do ANYTHING. Plus the fact that some of us CAN have A SINGLE good day occasionally, people assume we all have good days all of the time. MOST DAYS are not good da gg s, or even neutral days, they vary quite alot. Within a single day ican have some good hours and several bad ones, but the few good ones don't mean I'm suddenly capable of acting like a normal person.

chronic fatigue weaves its way into everything. people love to tell disabled people they'd love to rest as much as we do, but they fail to understand how tired we are while we rest. we are not relaxed, we are generally pretty miserable, either from pain, irritability, or fatigue- which bleeds into every aspect of your life. being too fatigued to get up off of the couch means that you're too fatigued to get to the cupboard to pull out pans to attempt to start cooking.

the steps hidden within steps that are required to do a lot of tasks related to being a "functioning adult" are daunting, there are often way too many steps necessary to make "Simple" foods or do "simple" chores for disabled people to accomplish these tasks. chronic fatigue often means that even waking up from a nap or night's rest requires time to adjust to and power through

waking up is a process for me. im often no more alert and awake hours after i've woken than I am right after doing so. caffeine does not help fatigue- at least not at safe doses, for me, anyways. many days the act of moving from my bedroom to my living room is too much. taking dishes to the sink can be too exhausting. i have began falling asleep in front of the kitchen counter while standing because i realize the amount of steps required to clean the counters, or do the dishes, or prepare a meal that all of my energy instantly bleeds away

it's okay if you feel this way too. i have been dealing with chronic fatigue my entire life and it cost me my best paying job. i lost my ability to work because of it. it's not just you being "sleepy", you are genuinely too exhausted to function. you do NOT have the energy levels other people do, and that's okay. it's okay to let yourself be tired sometimes and address that instead of trying to pretend you're not tired.

i wish you good luck. you are loved

[thejournalofafaery]

We've had unexplained heath issues for years, and I'm starting to question if we might have POTS with more mild presenting symptoms. Obviously, I'm not sure, but a lot of our experiences do seem to align with POTS, so it's a possibility. I'm really overwhelmed and not even necessarily because we might have POTS, but it's really overwhelming to realize we might have another condition that's under researched that the healthcare industry doesn't take seriously and we're going to have to fight to even get the testing done. Like, we've given up on getting a proper autism diagnosis because it's just unobtainable. Like, with POTS, though, it really doesn't seem like it should be all that convoluted to do the initial testing. I struggle to take our pulse because it freaks me out a little, but how hard is it to figure out if our pulse goes up 30 beats per minute after standing within a 10 minute increment? Yesterday, I was at an urgent care, and the doctor was testing us for orthostatic hypotension, which we don't have, but the nurse even commented on how our heart rate went up during the standing test. I know I should have said something, but I'm afraid to even say POTS to a medical professional in fear of not being taken seriously. Unfortunately, I don't have access to all of the pulses taken yesterday during the test, but our initial pulse when we got there was 75 which was sitting and our last pulse which was taken while standing was 113. I don't know what the sitting pulse before that was, but if it was anything like 75, why wouldn't they question if orthostatic tachycardia could be the cause of our symptoms? If we don't have POTS, that's fine back to the drawing board, but I'd like to have the peace of mind of knowing, and if we do have POTS, hopefully get treatment.

- Fawn

[furfag-cringelord]

happy disability pride month to anyone having a really bad flare-up rn btw. take care of yourself

[evanoxvt]

Literally told today to *try* to do some "small" exercises after informing my doctor that my ongoing dizziness issues are hindering my ability to do my PT exercises WHILE AT PHYSICAL THERAPY. Yet she wants me to do more, not a little bit more, but the small amounts significantly more than my PT exercises are...wtf doc, what the ever loving fuck.

when will doctors give up and leave me alone? my fatigue is so so bad and ive tried everything available and it hasnt gotten better, but every time i crash after months of doing the prescribed slowly incrementing exercise im just told to do it again. i dont want them to give up, but id rather them give up than keep forcing me to do this shit that obviously doesn’t help. ive done it all right multiple times. i get theyre grasping at straws for treatments but jesus just let me REST if ur not gonna actually help.

[vampiresblog]

currently the worst part my health rapidly declining is that I have barely any energy at all and the energy I do have is spent on booking drs appointments, arranging with specialists, organising all of my medical records and history to bring to new drs, submitting applications for disability support, getting blood drawn for genetic tests, etcetera. I don't have time to do anything except be sick, and I don't even know what I'm fucking sick with

[cosmiccripple]

me as soon as i get out of the shower:

[id: a side view of a dark grey clipart person lying down with a white background, the arm is outlined in white and positioned in front of the torso, the visible leg is raised above the body, resting on a rounded dark grey block]

[c-kiddo]

i just know hes iron deficient (caduceus clay)

[evanoxvt]

Having chronic health is a full time job, and is often disabling.

Let's start with the most basic of concepts. A full time job is 8 hours a day, 5 days a week. AKA 40 hours. Chronic health SYMPTOMS are usually 6-7 days a week (because once in a blue moon we get ONE EXCEPTIONALLY GOOD DAY), and are often EVERY WAKING MOMENT, and possibly every sleeping moment too. Sometimes we get a few hour break from our symptoms, but they are generally 24/7.

That in an of itself is far more than a full time job. And we don't get paid for it.

Then you have all the doctor appointments. These take long periods of time, and cost you money. That's a triple negative on your time sheet, you got energy spent on health symptoms, the doctor appointment, AND loosing money you aren't able to make.

So now where do we add in the time for all the little life necessities? It often takes disabled folks much more physical energy and more time to do things like shower or brush teeth because we can get injured and/or fatigued from things like this which normal people do not. Cooking is another time consuming and energy draining task. The amount of time I loose from spending 5 mins cooking instant ramen makes it really not worth it. There's a reason many of us go without food for long periods of time if we do not have a support person doing basic life things for us or with us to ease the burden.

NOW imagine how much MORE energy it takes to do chores, like washing your dishes or laundry. I'm not even talking general cleaning, just the bare necessities here.

Somewhere in there you need the energy to ACTUALLY EAT the food you or someone else made.

If you haven't caught on to the massive amount of energy it takes for us to do these things yet, you probably need to go learn about it elsewhere because I'd like to get to the next portion of this.

We often face medical gaslighting from doctors, and general gaslighting from the rest of the world, especially people who know us well or absolute strangers. People who know you a LITTLE BIT are the most likely to not gaslight you in my experience.

This means for every SINGLE doctor appointment, we have to PROVE there is an issue before we even get to see the doctor.

My most current personal example is meeting my new PCP (of whom I will likely be changing AGAIN due to his fear of dogs and inadequate care related to my service dog being in the room with me). He did a basic physical, looked at my recent labs and test results, and then told me "You are healthy, I cannot find anything wrong with you." That is not acceptable as I was there after having ANOTHER doctor say the same shit when I am getting dizzy constantly, having clear cut tachycardia issues, and having signs of BP issues (debatable on the issues itself). These things, in addition to my medical history AND life-long experiences indicate I very likely have POTS.

POTS is Postural Orthostatic Tachycardia Syndrome. This is a autonomic dysfunction condition (falls under dysautonomia). I'm really not the best at explaining this condition, but common symptoms are: Dizziness, I believe both Orthostatic intolerance and orthostatic hypotension, obviously tachycardia (but I've heard you can have bradycardia as well, unsure on that one). POTS is considered a syndrome because it is a conglomeration or group of symptoms and cannot be diagnosed by a single type of test.

I have heard of several tests that can make it much easier to get diagnoses, but even then you may struggle to get diagnosed.

I personally have done an ECG/EKG, as well as a 24hr holter monitor (basically 24hr EKG), and a huge amount of blood tests. At home, I have done a number of tests (specific and random) of both my blood pressure AND my heartrate. This is how I found out that I have abnormal BP and HR.

There was an issue with the day I got the 24hr test done, as I became ill (from doing laundry) and had to lay down for the MAJORITY of the 24 hours. As a result they did not see the tachycardia in the way we needed it to be seen (aka I wasn't standing up enough to get the results to prove the tachycardia).

I have literal videos and pictures PROVING that I have tachycardia and what we believe to be orthostatic intolerance (but could be hypotension....we highly doubt that though). The doctors ignore it because I DID IT. They however will not do the STRICT testing required to prove it. They also won't refer me to the departments required to test these issues.

I was literally sent home with some "homework" by the nurse to get current vitals all weekend long and email them in to prove the issue and request a referral to the blood pressure clinic. Today I spent 40 mins doing this so far. It will actually take longer later today when I do it again because I need to start with laying down for an hour.

Generally you spend 20 mins to do this 'test', but I have to do the version that is comparable to a tilt table test, as my doctors have refused time and time again to give me the test to prove if I have or have not been passing out. Yep, you read that correctly. It turns out I very likely have been passing out for very brief amounts of time but have no way to confirm without tests LIKE a tilt table test.

I'm not the best at working quotes in so take a look at it then I will discuss more.

"Results showed that standing after being supine for 1 hour was at least as good as 10-minute tilt; longer tilts introduced excessive numbers of false positives. Standing HR and BP measurements were taken at 1, 3, 5, and 10 minutes. Thus, standing tests for POTS requires previous supine rest. In our hands, >20 minutes is needed to reach fluid equilibrium."

Reference:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3639459/

This means the original test I was told to do (which took 20 mins) is not as accurate as this one. In the one I've done, which has MORE THAN PROVEN the issue, you lay down for 10 minutes, not 1 hour, take your laying BP, stand and immediately take your BP, wait 2 mins, take BP, wait 3 more mins, take BP, and wait the last 5 minutes to take your BP. Aside from the laying down BP these are done AT minutes 1, 3, 5, and 10 OF STANDING. Overall this is a 20 minute test. While trying to use it in place of a tilt table test you need to add an hour instead of 10 minutes, so it comes out to be 70 mins total.

Now take this morning for example:

I was already laying down for far over an hour since I was awake but not getting up yet (technically I got up a few hours prior to use the restroom and take care of the dog, but I immediately laid back down and multiple hours passes). I took my BP, then did the 10 mins of standing and took those BP's, then did the same thing but while laying for another 10 mins, and finally changed HOW I WAS LAYING to my usual laying position and did 2 in that position, 1 after initially moving and the other after 10 minutes.

So for A SINGLE one of these I spent 40 minutes, and later will have to ADD an hour onto that, JUST SO I CAN PROVE the thing the doctors are ignoring.

Now tell me how spending several hours A DAY on doing 'homework' for your doctor ON TOP OF EVERYTHING ELSE is somehow not A FULL TIME JOB??? If you really thing it isn't you need to get off your high horse. Because this is real and a serious problem.

Disabled folks, like myself, are constantly being told we aren't doing enough or that we need to just try harder, or that we aren't worth it because we don't work, etc. BUT these people saying this cannot even begin to fathom what we go through on a daily basis or how much energy it would take them to simply do our 'homework' for the doctors. Literally, tell me you have a full time job that lets you take nearly 2 hour breaks on a frequent basis to check you BP or to test your heartrate, or to let you lay down and decompress (physically or mentally) or that lets you take frequent breaks for HOWEVER LONG YOU NEED, or that lets you call out sick FREQUENTLY, with anywhere from a decent notice to absolutely no notice, or even having to leave work early because you overestimated your capacity for the day.

Jobs like that DO NOT EXIST. They don't. There are small companies that may allow that, but that would be the one-off exception, and is certainly not easy to find. Jobs like streaming give you the flexibility for all of these accommodations and more, but does not provide you with medical, dental, or even a steady stable income.

So please for the love of all things good in this world, stop treating disabled people like we don't do enough. We shouldn't have to earn the right to EXISTING. We shouldn't have to PROVE that there is an issue to the people expected (and paid) to help us. We shouldn't have to beg for help because the rest of the world has turned their backs on us.

It's ridiculous. Absolutely ridiculous. Be kind. Be understanding. Lend your ear if you cannot do anything else. We work harder than you will hopefully ever have to know.

Thank you all so much for reading this far into my post!!! I don't really feel comfortable with promoting myself but I will use the mental excuse that its almost my birthday so "just do it already FFS".

There are a few ways you can support me, both with and without paying a single cent!

My first link is going to be my throne, where you can safely buy me gifts that are delivered directly to my door! You can get me most kinds of things, and I do sometimes update it to contain alot of fun stuff (especially around holidays). I can received several very helpful health related gifts, and love that my community has shown a desire for my health to be improved in any way possible. This is very heartwarming and really makes me feel seen, heard, and appreciated. You can find anything from streaming stuff, health stuff, dog stuff, and fun stuff on my throne so feel free to browse. I also have some payout items that go to my throne balance for me to spend on whatever I want in case you can't make up your mind.

The second link is my carrd link, which contains a bit more information about me, as well as EVERY POSSIBLE LINK you could want to find to support me. This is where the free support comes in. If you follow me on my socials, youtube, or twitch you will be able to interact with me. As we all know, the world of social media and content creation requires people to interact with you and your content. I will be posting to youtube again soon, but as of right now my most active places are discord (where you can get health updates, live notifications, and just chat and chill with me), twitch (where I stream), and Twitter/X (where I am currently most familiar with posting things).

I appreciate alot of the little things and am unfortunately not the best at expressing it....but I try, and that is kind of the most important part. Again, thank you for reading this far, it really means alot to me.

[hellyeahsickaf]

Floor time, elevating my legs on a chair in the kitchen until the blood stops pooling to them and the POTS episode subsides. Very out of breath, almost passed out and met god. But he couldn't face me bc I have many words for him at the moment

[jezunya]

Anyone with experience taking trazadone (and/or with POTS)

Do you have tips on handling lightheadedness? I don't mean occasional dizziness when getting up, but like I've been sitting here all day, feeling fuzzy and dizzy and vaguely nauseous even when unmoving

My doctor added 25mg of trazadone at bedtime to my meds a few weeks ago, and it was okay at first, but the lightheadedness is getting out of hand. I'm trying to eat salt and drink electrolytes and plenty of water, but I can't seem to get ahead of this now

Any tips from other spoonies, dietary or otherwise, would be much appreciated

[how-much-for-a-whump]

WHUMPCEMBER day 18:

Prompt: "Chronic pain"

Terzi S02E04

@whumpcember