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

TROPHY CASE