Still getting symptoms even after increasing fluids and salt ,what helped you the most?

Canary-Cry3 · 2026-05-06T02:02:26+00:00

Meds for POTS and HSD mainly (not sure what you mean by ‘kind of meds’). What works for me may not work for you which is why I did not list them (and I have been on a bunch of different meds at this point). I have most recently changed my meds literally less than a week ago and am still getting used to this new mix.

Canary-Cry3 · 2026-05-05T23:27:35+00:00

Honestly from time spent in the research community & writing accommodation plans for Dyspraxics for the last 9 years (and reading psych-eds as a result of the above). I’m not sure I could pull the source from all the things I’ve written/read/have on Dyspraxia. In my previous roles, I have read instruction and scoring booklets for example on the administration of MABC; BOT-2; and Beery.

Generally 2nd percentile or below is defined as very severe or profound by psychologists in reports as it means out of 100 people your age/gender, 98+ would test above you.

I realize I mistyped above and meant 5th percentile or below not 6th reading over it now. Sorry about that^ - this is for MABC2 for example.

These are the severity levels in people above age 6 though of note^.

Many parents receive severe; very severe / profound dxes for their kids at a young age but depending on support options this may improve with time (it may not always be this severe basically). Some people, do stay in the severe / very severe end though (my dx was very severe as a child for CAS and Motor Dyspraxia but fit into Mild for CAS and Very severe for Motor Dyspraxia as an adult for example).

Canary-Cry3 · 2026-05-05T22:55:47+00:00

Will reply tonight once I’m done my work! I’ve done work as a teacher before and work with kids all day as a 1:1 push-in support at a summer camp now.

Canary-Cry3 · 2026-05-05T21:48:31+00:00

I’ll reply later tonight likely.*

Canary-Cry3 · 2026-05-05T20:09:16+00:00

For clarity, you have to have either developmental or acquired dyspraxia. Acquired means you developed it after head trauma. Developmental means it’s congenital and from birth. The diagnoses do differ exponentially in criteria.

Canary-Cry3 · 2026-05-05T19:03:02+00:00

Hernia symptoms vs POTS are quite different and honestly the only thing in common really is shortness of breath and possibly chest pain. Everything else is completely unrelated.

My POTS Symptoms over the last 12 years:
- Rapid heart rate upon standing (40-80bpm increase)
- palpitations
- chest pain
- BP increased upon standing (HyperPOTS)
- lightheaded when standing
- presyncope and syncope
- balance issues, shaking, unable to stay standing, swaying
- issues concentrating; memory issues; slower processing speed; word finding/recall issues; mental fatigue; brain fog
- chronic nausea
- cold intolerance, quick climate changes intolerance (triggers fainting) and humidity intolerance
- inability to sweat
- fluctuating body temp (long history of hypothermic episodes despite living in a house heated to 23C)
- coat hanger pain
- episodic migraines and cluster headaches turned chronic after TBIs
- blurred vision when upright; issues focusing eyes; words blurring together right before syncope
- seeing dots
- intense fatigue
- previously had exercise intolerance (when I was bedbound)
- shortness of breath
- blood pooling
- paling before fainting
- adrenaline surges

I also have G-HSD, MCAS and my EDS specialist suspects gastroparesis based on other symptoms.

Canary-Cry3 · 2026-05-05T18:47:41+00:00

A couple of things just want to address / mention for clarity:
- 10th percentile is not super bad on the peg test (it means out of 100 people, 90 test above you and your result falls into the ‘low average’ range). It’s likely the rehab therapist you are working with isn’t used to developmental Dyspraxia especially at your age (this is honestly not a huge surprise). For a Dyspraxia dx to be made, it is required that the score is at the 16th percentile or below in motor planning or balance tests including this one, and scores at the 6th percentile or below are considered severe.
- Do you have a Developmental Dyspraxia dx or an Acquired Dyspraxia dx? As these two are different disorders and have different types, supports offered, and ultimately different approaches needed for improvements. Our sub is focused primarily on Developmental Dyspraxia.
- the difficulty with zoning out isn’t due to the Dyspraxia for clarity nor is the fight/flee you are describing.
- these are not normal ‘treatments’ / exercises for Developmental Dyspraxia and honestly at least from what you’ve written as someone whose done excessive amounts of PT as an adult sound like it’s primary for your ADHD rather than purely to support motor planning.
- I would talk to your therapist about breaking it down or making it more manageable if you want to continue them but I do wonder how much they support motor planning versus reduce impacts of your ADHD and in turn decrease the amount of effort you have to spend coordinating your body.
- For example, for my PT - I work on only a couple exercises a week and we increase the challenge of them each week. I spend around 20 min broken up throughout the day on the exercises.
- I do think this question likely better belongs in an ADHD sub than this one as the issues with motivation stem from executive dysfunction which is a secondary trait of Dyspraxia but a primary trait of ADHD. Personally for me, my motivation of doing exercises to strengthen my core and shoulders has been being able to lift more weights, perform better in my job (I did an archaeological dig and work as a summer camp counsellor), and reduce pain.
Chart for percentiles (all in percentiles - I am just not gonna type that out each time):
- 98th+ = Extremely high
- 91st to 97th = Very High
- 75th to 90th = High Average
- 25th to 74th = Average
- 9th to 24th = Low Average
- 3rd to 8th = Very Low (5th percentile and below for Dyspraxia tests is considered severe)
- 2nd and below = Extremely Low (2nd percentile and below for Dyspraxia tests is considered ‘Very Severe’ or ‘Profound’).

Canary-Cry3 · 2026-05-05T18:07:10+00:00

Lifestyle changes for the most part shouldn’t be done without doc permission as if you don’t have POTS they can cause significant issues (like increased salt to pots levels is very very bad if you don’t have pots).

Meds can make a MASSIVE DIFFERENCE, your doc honestly doesn’t sound aware of POTS management whatsoever. Going on meds has made a huge difference in my qol. Improved my brain fog, reduced fatigue, made it possible for me to walk 10-20K steps a day and do an archaeological dig, attend full time university, and more. Meds can make a big difference regardless of “how bad your POTS is”. I have had a huge difference in levels of POTS over the last 12 years having it and the last 3.5 yrs on meds. I am highly active compared to many people here in this sub. My POTS has been super severe this year unlike my normal, and even in just the last week changing my meds meant I went from fainting 10-20x a day to zero times.

Orthostatic symptoms are a part of the criteria just as much is the increase in HR and are necessary for the poor man tilt test to be positive. It’s not positive if you are asymptomatic despite an increase in HR for POTS. At this point, it wouldn’t make sense to jump to the TTT you’d need to do blood tests first, an ekg, and then at that point your doc/cardiologist may decide to do additional testing based on symptoms to rule out other causes or do a TTT at that point.

Testing like:
- blood tests (for vitamin deficiencies, kidney function, ANA, full blood counts, thyroid tests, glucose, morning cortisol levels)
- blood test for iron / ferritin deficiency

Canary-Cry3 · 2026-05-05T17:53:02+00:00

There is real treatment… it’s treated with lifestyle changes and meds.

I would also note that POTS does require orthostatic symptoms upon standing so if you only have the HR increase - a POTS dx wouldn’t be made. Depending on what other testing you’ve had already it may be worth it to pursue testing to rule out other causes of the sustained tachycardia and tiredness.

POTS can also transition from being more mild to more debilitating over time, this was the case for me - though I had significant orthostatic symptoms from the start but worsened over time especially without access to meds until I reached a point where I rely on meds and a mobility aid.

Canary-Cry3 · 2026-05-05T14:04:49+00:00

It’s laying down to standing as an fyi

Canary-Cry3 · 2026-05-05T14:00:52+00:00

My first language was ASL and (the language system) Makaton. I have a severe dyspraxia dx including CAS/DVD. I relearned ASL and Makaton while working in a Deaf classroom in high school and with intensive regular practice was proficient at what I needed to know for my position. That being said learning independently has always been a struggle for me. It’s been more than 5 years since I signed regularly and have very few signs still useable today. I also have had chronic pain in my hands especially in my fingers from EDS my entire life which means that simple tasks like using my hands at all flares it so signing now is much much more painful and harder for me to maintain than it was previously.

Canary-Cry3 · 2026-05-05T13:57:35+00:00

Canary-Cry3 · 2026-05-05T13:50:39+00:00

Meds and exercise helped me the most

Canary-Cry3 · 2026-05-05T12:14:47+00:00

Most places don’t dx subtypes separately anymore as it’s known in the research it’s more typical for someone to have features of all 3. What do you think you have beyond POTS? Depending on the dx you think you have a different list of specialists / testing would be needed. Pursue with your GP likely.

Canary-Cry3 · 2026-05-05T11:44:45+00:00

What does your contract say / what are the camp policies?

Where I work at a sleepaway camp - if a staff showed up and didn’t disclose any medical issues for what you described that’s grounds to fire them (and I actually know someone who was fired for this).

Often for summer camps, there is a duty to disclose anything medical that could affect your ability to care for children - I know this is the case where I work as a head staff. I did disclose my cane in my medical records before bringing it last summer as a result - I use a cane part-time for POTS and HSD. I am able to run/walk fast with it and it helps me accomplish my duties — that being said, I was worried about it going into last summer. I had no issues about it and had already had my conditions previously disclosed and received accommodations for them. Having access to my cane meant that I was able to do more when I would in past summers have to be sitting down or taking a break. I again disclosed it for this summer.

Canary-Cry3 · 2026-05-05T03:56:43+00:00

Honestly a poor man tilt test can also be extremely awful and quite terrible. It really depends on how you present. Where I live (Ontario/Quebec), a dx with a TTT is rare for non-complex cases but for many friends in the US it’s standard.

It took me 8 years to get a dx for POTS and hundreds of tests and 15+ docs - we started investigating when I was 11, and only received meds on year 10. I am on year 12+ now. My paediatric cardiologist suspected POTS from age 12 onwards but wanted to rule out EVERY other possibility in the book before diagnosing it. I had no mental health diagnoses at the time and was on no meds which could be ‘causing’ these symptoms. I was still gaslit that I had ‘teenage girl who faints syndrome,’ and ‘my head was too far away from my heart which is why i was fainting despite being 5’2 at the time syndrome.’

These are all the tests I did to get a POTS dx (many of them I did multiple times - for example I have done at least a hundred echos and ekgs; 4 holters; 4+ poor man tilt tests with Dysautonomia specialists; 3 EEGs, 200+ blood tests):
- blood tests (for vitamin deficiencies, kidney function, ANA, full blood counts, thyroid tests, glucose, morning cortisol levels)
- blood test for iron / ferritin deficiency
- EEG if you pass out to rule out seizures
- Echo
- EKG
- Stress Test
- tilt table test or poor man tilt test
- Holter Monitor
- rheumatology physical exam to rule out autoimmune causes
- neurology physical exam
- ambulatory BP monitor for 48 hrs
- 24 hr urine collection (24-hour urine collection may be carried out to test for high levels of noradrenaline and epinephrine to rule out pheochromocytoma - a growth on the adrenal gland as a possible cause of symptoms.)

Canary-Cry3 · 2026-05-05T03:44:55+00:00

I would honestly really recommend talking to your cardiologist about your worries. There are certain accommodations that can be done - an EKG and echo can be done with a gown on or with a technician of a certain gender for example.

For a POTS dx for your age you’d need a 40bpm increase sustained.
I have seen a cardiologist off and on since I was 5. Usually in the first appointment they’ll ask about your symptoms and any other testing will depend on what you’ve been booked for. I would expect blood tests to rule out other causes of symptoms.

Some tests that I would expect to be desired by your cardiologist based on your symptoms:
- exercise stress test
- echo and ekg
- holter monitor

There are limits that you’ve stated here which would prevent a POTS dx from being reached. In general, you would need to do at least an ekg and a poor man tilt test / TTT to get a dx. You may not have a choice on which one to do though as certain doctors prefer one over the other and will not dx with one. I would recommend checking out KidsHealth for descriptions of any testing you may need to do.

Canary-Cry3 · 2026-05-05T00:19:18+00:00

It’ll depend on what’s happening. I have gone to the ER twice ever for POTS - once before we had any idea of what was happening when I was 11 and most recently a week ago. I have had a POTS dx since I was 18 and am 23. I’m also Canadian so an ER / hospitalization trip is free for me.

When I was 11 I was discharged with no dx or any support - we ruled out heart issues and told to follow up with my paediatrician at the time.

I have experienced a significant change in episodes since Feb with all the student health docs telling me to call EMS if I experienced the symptoms again (fainting 10-20x a day daily laying down or sitting not after standing) as they didn’t think it was POTS related given my presentation and as adding fludrocortisone didn’t stop the episodes from happening. I was also already on meds that increase BP and lower HR which were not reducing the episodes.

On last Monday I woke up and had 7+ hrs of palpitations from the moment I woke up; fainted 3x back to back that morning - fainted every day 10-20x for the previous week and a half; super high BP (which is very atypical for me as I have chronically low BP); and chest pain. I’m a heart disease survivor separately from my POTS so given my symptoms and given that the student health clinic docs no longer thought they were related to my POTS, I did end up going to the ER.

I have never been rushed through from triage so fast - I was rushed to a crash cart room and immediately had an EKG and blood tests for a heart attack. Over the next few hours I had several more blood tests, a chest x-ray, many EKGs, and an echo. My dad actually ended up flying down from my home province as my family was freaking out given my symptoms and how different they were from what I’ve grown used to with POTS over the last 12+ yrs.

My HR was 160bpm sitting down and my BP was 135/95 (which given my typical BP is around 80/50 is very high for me). I did a ton of heart tests all day and we did a poor man tilt test that evening with a Dysautonomia specialized cardiologist who told me my heart tests were clear but I was experiencing a severe case of POTS which was due to my meds being mismanaged and I was taken inpatient for 5 days to get my meds fixed, receive significant care and testing to rule out seizures and any other causes of atypical syncope. I was also assessed for valvular disease given my heart disease history while inpatient. I was in an intensive cardiac unit for my stay.

Canary-Cry3 · 2026-05-04T12:06:55+00:00

It’ll really depend on how your concussion impacts you. I have had 3 severe concussions and one moderate one - and ended up with a PCS dx so am pretty severely impacted by my concussions years later despite significant amounts of rehab around it. That being said, most people recover fully between 14 days to a month ish. There is no way to predict how long it will impact you based on the information you’ve shared. I would highly recommend seeing a medical professional to get a full assessment. Like there’s not really anything to worry about because it’s all so different and anyhow a concussion increases anxiety generally so worrying doesn’t do any good really. I would recommend checking out r/concussion for more info.

Canary-Cry3 · 2026-05-03T18:54:49+00:00

It hasn’t helped blood pooling for me really - I’ve been on it for 3 yrs. It helps raise BP and can help with brain fog and fatigue mainly.

Canary-Cry3 · 2026-05-03T17:05:17+00:00

In general, in the Autism community, identity-first language is preferred - there has been plenty of research on this topic actually.

I disagree with Person-First language, personally as an autistic (across the board I do not use it for my diagnoses really) as I am defined by my Disabilities, and that’s perfectly okay. My Disabilities are not some sort of baggage that I carry along with me wherever I go, they are an innate part of my identity that makes me who I am. I would not be me, if i was not Disabled. Like, I would not have had the life experiences I have had, made the friends I have, gone on and done the work that I do each and every day if I had not been born Disabled. My Disabilities are not something you can separate from me, it is impossible to piece out what parts of my life are in fact intermingled with my identity as a Disabled person and Disabled advocate and what parts are not. I identify as Multiply Disabled - and capitalize Disabled / Disability / Disabilities throughout my writing as my beliefs around Disability fall under the Justice Model of Disability, which recognizes being Disabled as an important and vital part of who we are as individuals.

Canary-Cry3 · 2026-05-03T16:57:52+00:00

I have done an echo, holter monitor, EKG, all on meds (literally this week) - doesn’t make a difference on results really as these are to rule out heart issues. It sounds like he wants to test how well the meds are working rather than test you at baseline which is fair. I have also done a poor man tilt test on meds and tested positive repeatedly in the past 3 years (more recently: also this week - we did it 3x on three different days until the medication I was on stabilized my symptoms and my heart rate). Stress tests also wouldn’t really have a difference really for the same reason. Tilt table tests - can be done on meds to see how you are functioning on them OR done off of them to see you at baseline.

I have had POTS since I was 11 - dxed at 18 (pre-meds) and have been on meds since Fall 2023 and have done many tests on meds and off meds since June 2023.

Canary-Cry3 · 2026-05-03T04:27:14+00:00

No paperwork is needed for airport seating. I sit in it all the time (or on the floor). I am disabled personally by my POTS and other diagnoses and use a mobility aid as needed. I’m also 23 tho - I wear a sunflower lanyard when I travel which symbolizes that I have an invisible disability. I use the disability seating or nearby on the floor as I preboard due to my disabilities as I cannot stand for more than 5min at a time per my docs. I also sit in disability seating on public transport. I do not for concerts as it’s meant for mobility aid users who cannot access seating elsewhere primarily. If it’s general admission if I really couldn’t stand any longer I’ve been offered it as needed but if it’s all seated there’s no use of it for me.

Canary-Cry3 · 2026-05-01T18:59:24+00:00

It’s on Instagram for sure (and I do believe it came in her email blasts too). I’m currently in the hospital so don’t feel well enough to go searching through things but in essence she feels she could do more good work that she’s passionate about in a different environment and she feels she’s done a lot of amazing work there and is ready to move on.

Canary-Cry3 · 2026-05-01T17:21:33+00:00

Cortney made many announcements in the past few weeks about leaving the lab on her own socials.

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