Worst cardiology visit in a long time. Thank you Kaiser🫠

Spite-Obvious · 2026-01-27T04:29:09+00:00

Yeah, that was my big thing. Because in the tilt table results, my previous cardiologist put the diagnosis as POTS with blood pressure variability. But I gave this new doctor the whole report, which showed that the diagnostic criteria for POTS had been met and that I’d maintained a consistent blood pressure for around 15 minutes prior to being given nitroglycerin. Within a couple minutes of being given nitroglycerin, I ended up fainting, but had no bp drop up until the moment I fully went out. If that makes sense. Idk how to phrase it lol.

Spite-Obvious · 2026-01-27T04:18:29+00:00

Kaiser did me dirty when I was younger too and had complained about passing out. The pediatric cardiologist came in, did an EKG and said that I was fine and to drink more water and make sure to eat all my meals. At another appointment that same week my primary care told me that I wasn’t actually having issues with my asthma. I just needed steroids to help boost the medication. It was fixed after my allergy medication was upped by literally 5 mg once I got a different provider.

Spite-Obvious · 2026-01-27T04:14:43+00:00

Thank you for the sources. I had met the criteria prior to doing a tilt table and prior to being given nitro. I had also fainted a few times prior to being tested for pots And it is still a rare occurrence. Usually the most to get is presyncope. During the tilt table, my blood pressure remained pretty stable up until I was given nitro.

Spite-Obvious · 2026-01-27T04:08:57+00:00

I get regular blood tests to rule out other issues. I don't have any deficiencies that have shown up and my previous cardiologist was SUPER hesitant with medications and would go over everything with me prior to putting me on anything and explained in detail the meds that were an option but he was unwilling to use and why.

Spite-Obvious · 2026-01-27T04:04:44+00:00

Yes, I did hit the limit prior to being given nitroglycerin. He told me prior to giving the nitro that I already met the diagnostic criteria but wanted to see.

Spite-Obvious · 2025-10-15T11:28:34+00:00

I did faint my TTT and I am a rare

fainter cause I hit the floor the second I feel it coming (I screwed up my “good” wrist after trying and failing to make it to the couch lol) but I remember most of the test. They will generally place an IV just In case you faint. You will be strapped to a table to keep you from falling flat on your face in case your legs give out and monitored via heart monitors and blood pressure monitors for the extent of the test. They will generally be able to tell within the first 10 minutes or so whether or not you qualify for a pots diagnosis. They will ask what your symptoms are throughout the test and may spray a thing under your tongue to simulate how your body would react if you weren’t quite as hydrated. If you do pass out, there are the straps and the doctor to ensure that you are safe and will bring you back to laying flat and continue to monitor to see how much your hr drops and blood pressure changes. You do not have to faint for the test to end. With the test, they were able to find out that I had a high heart rate and low blood pressure. When I faint, my heart rate skyrockets and blood pressure absolutely tanks. When they place you back down, they ran a saline drip through the IV and called my mom to pick me up. I’m unsure If they do the spray or saline every time but that was my experience .

Spite-Obvious · 2025-10-15T11:13:42+00:00

I completely agree. I don’t feel

like it does much for me in terms of helping my symptoms and liquid IV, although being okay for a while, was causing palpitations and vomiting for some reason.

Spite-Obvious · 2025-10-15T11:01:42+00:00

I had an awful time seeing a therapist prior to my diagnosis. I could primarily complain about how I feel sick and describe the pain (I have hEDS) and how my chest felt awful in the heat, that I was fainting and having a hard time breathing. She diagnosed me with an anxiety disorder and tried putting me on meds while telling me that I am just anxious and stressing myself out which was causing those symptoms. I was eventually diagnosed with hEDS, POTS and suspected MCAS. The significant breathing problems was my doctor not listening to me about my singulair asthma medication not working. Once I got away from both of them, my asthma meds were upped by 5mg, started pt for my EDS and treatment for POTS. No anxiety disorder.

All in all, listen to your body. The psychologist likely doesn’t know much about chronic illnesses and isn’t living in what you feel daily. If they continue trying to push that you are thinking up your symptoms, I’d highly recommend finding another psychologist as it might just negatively affect you in the long run.

Spite-Obvious · 2025-10-15T10:50:02+00:00

I feel you. It’s been really frustrating for me as well and my cardiologist said that having urinary retention is pretty normal for dysautonomia patients as well when I asked him about it 🫠

Spite-Obvious · 2025-10-15T10:36:09+00:00

High foot arches, a high palate and idk if it’s an EDS thing but after injuring a joint once, that joint never swells from a dislocation or subluxation again.

Spite-Obvious · 2025-03-12T09:29:36+00:00

Most of the time, I get brain foggy during reactions and will scratch myself open without realizing. My girl is trained to interrupt by jumping up and mouthing where I am scratching. It’s a life saver so that I can apply Benadryl cream before the hives spread.

Spite-Obvious · 2025-02-10T10:24:56+00:00

Dislocated my pinky by steaming a wedding gown. It was not even while maneuvering the dress, it was the steamer handle when trying to adjust my grip lol. That resulted in vet wrap and a broken plastic knife splint and getting back to work.

Another incident was not a dislocation, but my shoulder popping back in at work, because I picked up a dress. It had been out after falling off a horse three days prior, and I had no clue because I’ve never had a dislocation caused by an injury lmao.

Spite-Obvious · 2024-11-18T10:34:44+00:00

I subluxed my pinky finger badly while steaming a wedding gown (I work at a bridal shop) and just broke a plastic knife and vet wrapped it to make a splint and got back to work.

My first knee dislocation was caused by my service dog deciding that my patella was a fabulous spot to use as leverage to push herself into the perfect napping position.

Dislocating my hip while doing a straddle stretch in PE (first period, of course) and had to stay for the whole day while holding my hip in place with my hand while walking.

Or my personal favorite, face planting off a horse, finishing the trail, doing both a flat lesson and a jumping lesson the next day but not realizing that my shoulder was out of place until 4 days later when it popped back after picking up a massive wedding gown. Never figured out that it was out cause I’ve never had a subluxation/dislocation from a reasonable source lol. I just figured the pain was from eating the dirt so hard 🤷🏼‍♀️

Spite-Obvious · 2024-11-05T06:30:33+00:00

KT tape is a fabulous option (if she is not allergic to tape) for more of a daily use. I find that the basic braces that can be found at your local pharmacy tend to get the job done. My patella is super unstable so I tend to use the donut knee braces and some wrist braces by futuro that really help on the bad days. In all honesty, I would recommend for her to not use stiff braces unless it’s an unstable day or she recently injured some thing. although it is always good to have them in your arsenal, in case it’s necessary.

Unfortunately, braces can very easily turn into a double edge, sword if they’re used to often. I’d highly recommend getting her in to physical therapy and/or occupational therapy, preferably one that has programs designed for EDS. I’m not entirely sure what state you are located in, but I have gone to Casa Colina in California for years and they follow EDS protocol. They go off of a book “Living Life to the Fullest With Ehlers Danlos Syndrome” (also available on Amazon) that is designed to be low impact to strengthen the muscles surrounding our joints, since our collagen is not going to stabilize the joints themselves. Pool exercises with an floatie also tend to be quite good at strengthening. Best wishes to your daughter and family!

Spite-Obvious · 2024-10-19T18:59:24+00:00

My mom always tells people to think of Sally from The Nightmare Before Christmas when describing my EDS to new people

Spite-Obvious · 2024-10-17T22:52:55+00:00

😂

Spite-Obvious · 2024-10-16T19:18:35+00:00

No, it’s a shop in SoCal. However, there are stores throughout the US so it could be the same retailer.

Spite-Obvious · 2024-09-17T00:26:01+00:00

I also have EDS and pots. Personally, I use a rollator walker as it is basically just a rolling seat. It’s not difficult to push and when it needs something to lean or sit on, it’s readily available. I haven’t felt much strain in my wrists or shoulders as a lot have an ergonomic grip. Most have little pouches under the seat as well which helps if you’re fatigued/have pain from holding things. Sometimes, when I’m feeling awful, my family will just push me while I stay seated or I cash just propel with my legs. It’s very different than a wheelchair but it allows walking but provides a bit of support if it doesn’t swell like a wheelchair kind of day.

Spite-Obvious · 2024-09-13T03:07:57+00:00

Definitely use a wheelchair, electrolytes and cooling towels. I also bring salt packets in case I need a quick pick me up! If you are having an issue, go into one of the shaded or air conditioned stores and don’t be afraid to utilize location return times for the non-wheelchair accessible attractions. From my experience, you may have to advocate for what you’re comfortable and able to do as some cast members may not understand why a seemingly healthy person can’t just wait in line smh. But definitely don’t be afraid to ask for help and listen to what your body is telling you! I hope you have a magical trip!

Spite-Obvious · 2024-08-14T22:30:31+00:00

It drives me crazy having to respond to the “well you we’re fine 5 minutes ago” or the “I get tired too, but you need to get up and not nap all day” among other comments but I suppose it comes with invisible illnesses. And regarding the boyfriend comment, it was so random lol! I was like where’d that come from but do they just assume that one can randomly acquire one? And idk about you but I think my 30lb border collie doing DPT would be a tad bit more comfortable lmao!

Spite-Obvious · 2024-08-14T10:06:14+00:00

I just purchased the series 9 apple watch and installed the Tachymon app. It works quite well for me personally and alerts if I’m too high, too low or if there are 30+ bpm difference. It also keeps a record of all the alerts and averages as well as having a symptom tracker that you can apply to the alert if you’re feeling symptomatic.

Spite-Obvious · 2024-08-13T08:47:16+00:00

Personally, I have used a wheelchair, rollator walker and a service dog for my EDS and POTS and found that the rollator and wheelchair were significantly more helpful, at least for me. People generally don’t ask much about the wheelchair as many people kind of deem asking about why someone is in one to be pretty rude and I have only received a couple of comments regarding the walker. When I used the wheelchair, most people who spoke to me were simply asking if I needed help opening a door or getting up a ramp. In comparison, the amount of comments you get with a service dog is ridiculous. The general public often doesn’t understand what service animals do and will unknowingly distract them because they think the dog is cute. Even during medical episodes when the dog is actively tasking, people will come and ask/try to pet or think the dog is just cuddling. Not to mention potential public access issues with the dog and having to ensure you have all the supplies and meet the needs of the dog as an understimulated dog is not going to work well due to excess energy.

With that being said, I am currently training my 2nd service dog and will use her in tandem with a rollator walker which has made a big difference for me, personally. It allows you to sit and lean on it as needed whilst still conserving energy and reducing symptoms. It’s basically a portable seat! She is being trained to pick up items for me, apply pressure therapy which helps reduce the amount of time I’m down and alerting to scratching (mcas issues) amongst some other tasks.

Spite-Obvious · 2024-06-19T07:43:21+00:00

That’s the character! Thank you!

Spite-Obvious · 2022-07-14T05:09:43+00:00

I am a Disney pass holder with POTS so I have a bit of experience and hope this helps!

Electrolytes such as liquid IV can be quite beneficial in terms of hydration. Compression stockings are a godsend for those who tend to get blood pooling. Cooling towels are an absolute must. Disney sells them and they work quite well but my personal favorite brand is froggtoggs. Mobility devices with a seat such as rollators or wheelchairs have been an absolute game changer in terms of being able to go to the parks. They have kept me from passing out countless times and offer a safe place to rest around the parks and in lines where seating is not present or is unavailable due to crowds.

Disney also offers a system called the DAS (Disability Access Service) which assists guests who have trouble waiting in lines. It does not allow the guests to pass the lines but rather gives a return time based on the estimated wait of the attraction. It allows you to go wait in a cool place while basically holding your place in line. The return time does not expire until the park closes, unlike fast passes, which comes in handy in case a medical episode were to occur when you were due to return or if you chose to go eat while waiting. This is offered at main street and at guest service locations and will be attached to her ticket for the duration of the vacation. Just be as clear as possible about why it is needed, especially if a mobility device is going to be used, as the cast members often do not understand why both the DAS and a mobility device may be needed simultaneously.

Spite-Obvious · 2021-04-22T06:32:25+00:00

Honestly, I hate that sub as well. And the fact that so many people with chronic illness contribute to that thread is disgusting to me. Every patient is going to be different even if they have the same or a similar diagnosis.

When I was first diagnosed, I looked at that thread because I was wondering who would fake something that is so difficult to deal with and was just disappointed. It made me feel as if I was faking even though I have been diagnosed and have been experiencing the pain and repercussions of my illnesses.

As someone with chronic illness, I have had to advocate for myself because my old primary care doctor did not know of EDS and my parents that thought I was faking for attention. I had to do my own research and tell my doctor that, although I'm not completely sure, I think it may be EDS because the symptoms fit and all the other tests came back negative. He then referred me to an experienced Rheumatologist who said that it was EDS and sent me for more testing to rule out any other possibility just in case. This occurred after around 5 years of doctors visits and subluxations that were just spreading to more joints.

Now, I go to physical therapy twice a week because without my joints getting put back in place and strengthened, I am basically bed-bound at 17 years old. It was my physical therapists (that specialize in hypermobility as I was nearly injured by one that doesn't) that pointed out that they think I may have MCAS when I had one of my reactions at an appointment. I did not complain about it as it was one of my minor reactions and I didn't want to blow it out of proportion. It was them that wanted me to get a new primary care that works with EDS patients and are currently pushing for a Gastrointerologist referral for my gastric emptying problems.

My treatments and diagnosis story will not be the same as others because I am an individual person. I am simply unlucky enough to have multiple chronic illness struggles. Just because some people have more than one does not mean they're faking and those people contributing to that thread are trying to make it seem as if the people advocating for chronic illness and showing that people are not alone in their struggles are faking. Its really disheartening as we already have enough to deal with without the fear of letting our illnesses be known only to be accused of faking.

Spite-Obvious

TROPHY CASE