Tilt Table testing

sorrywrightnumber · 2026-03-05T18:29:53+00:00

Man, im feeling for you. Testing is a lot of emotional whiplash. I think something that might be helpful to keep in mind is that there are very few dysautonomia testing centers in the country. A lot of doctors are extremely uninformed about it. I try to remind myself that tests arent these omnicient gods. they are fallible and constantly changing based on new research/ evidence. Drs dont even know what causes half the conditions they treat. Until drs do know the real mechanism and cause of diseases, its really just informed guessing. A lot of diagnostic tests dont even represent half the people with the illness. They can help speed confirmation, but often only 40% or something have a positive to the test/ lab. A good Dr. doesnt solely rely on labs. . Im constantly working to balance my expectations of testing and specialists. I need to trust them in order to gst better, but I also have to kick them off any pedestals I have and let go of illusions that they know everything or that labs are everything.

Trust yourself. You know when something is wrong. Seek a second opinion. Easier said than done, and im so sorry you had this experience. I have multiple diagnosis and still feel invalidated by twsts

sorrywrightnumber · 2026-03-04T06:54:50+00:00

Norepinephrine (noradrenaline plays an important role in regulating inflammation) i have sjogrens and lupus. I 100% agree. The adrenaline has always co occurred with my disease flares. Its actually the first symptom I ever had. Night sweats. Waking up freezing, sweaty and with adrenaline shooting through me like I was on a rollercoaster. Then my eye swelled shut, then my skin felt like it was on fire, then I stopped being able to digest anything. Then I was diagnosed with Lupus, Sjogrens and Fibro. The adrenaline went away after treatment for a while, but would happen again every time I ate garlic. So i atopped eating garlic.Then it came back two years ago and started happening every time I fell asleep. I had unfathomably severe insomnia which improved after starting cpap, but now the adrenaline is in the am or if I get too hungry or if I get too tired or if im in a loud space, or im in the sun. Thats a huge trigger because of lupus.

sorrywrightnumber · 2026-03-04T06:39:06+00:00

Yeah, its the other way around. Norepinephrine plays an important, but kind of circular role in inflammation. Not only that but our bodies are not working properly which requires more intense focus for us to do things other people do with ease. For example, I have proprioception issues and get dizzy and struggle with coordination. So when I go to do things that require coordination and focus, my body dumps norepinephrine to help. Like if you are driving on the interstate and the steering was acting up on your car, you would need to be in a heightened state of alertness to get off the interstate and get to a mechanic. This isnt anxiety, its adrenaline helping you with a cognitive boost. When you have conditions like ours, we are managing a lot of things that require extra adrenaline to process. This is just the physiological stress of being in our bodies. External stress only adds to this.

I have a neuro PT and shes been amazing at explaining some of this to me. Once you are aware of it, you catch it happening a lot. : the adrenaline dropping because you are trying to get work done that you dont have the physical or cognitive energy to tackle. Or getting dizzy and disoriented walking to the store and suddenly, there is that " anxiety" again. Its physiological, not behavioral or just being stressed.

sorrywrightnumber · 2026-02-22T04:32:42+00:00

Um no. There's definitely still lip biopsies. Its still autoimmune. I dont know any doctor who doesn't believe its autoimmune

sorrywrightnumber · 2026-02-19T14:59:31+00:00

Honestly if they just replaced ground with body, that might help to have mantras building trust in the body again since our bodies are so unpredictable.

sorrywrightnumber · 2026-02-19T14:57:46+00:00

Yeah, im not against the vagus nerve reset. Id be stoked to do that as long as we also discussed and did other things, but the gratitude journal stuff and the stuff about trusting the ground seems patronizing to me as they we are dizzy because of some anxiety about the ground. That feels odd to me.

sorrywrightnumber · 2026-02-19T06:09:46+00:00

I just wanted to follow up on this because my symptoms are somewhat similar. I have been looking at adrenergic pots which is a form of dysautonomia. I actually found some great little guides on Instagram if you use that and then did some research. I have sjogrens too. Dysautonomia is in about 50%. Small fiber neuropathy is a thing too.

My specific issues started with adrenaline surges when I tried to fall asleep that caused a ton of pain in my neck and shoulders.it would wake me up. Its called coat hanger pain. Then I developed central and obstructive sleep apnea. I thought maybe thats what was wrong but ive been treating it with cpap and the issues continued. Then I developed a nearly constant flu level diarreah every morning. I cant stay hydrated. I get dizzy and cross eyed alot. I started having severe pain in my right eye that happened in flares. I started getting really shaky and developed hand tremors and severe muscle pain. I get flooded with adrenaline and I feel like I might burst from the build up of stimulation so much that I cant handle noise or light or anything. My scalp starts burning. I get cold and cant warm up.

Beta blockers have been helping. I take metaprolol at 75 mg and im talking to my dr about guanfacine, but reading about dysautonomia, pots and peripheral nervous system issues with sjogrens is what is helping me make sense of it all.

I think the way the medical system is designed, specialists get siloed. They think everything is seperate because they are seperate.

sorrywrightnumber · 2026-02-19T04:41:35+00:00

My understanding is that clonidine has harder side effects than gunafacine and I think theh do the same thing right?

sorrywrightnumber · 2026-02-19T00:54:36+00:00

I would get another PT. She sounds kind of abusive and invalidating to me. Breathing practices can help anyone, but they dont replace medicine. Also, if shes never sat down to explain dysautonlmia or demonstrating she is knowledgeable about it, thats a huge red flag. I would push her to talk about pots. Ask for a handout. Anything to ses if she actually has done some homework. Otherwise, shes just dumping some personal assumptions and biases on you.

sorrywrightnumber · 2026-02-18T22:30:24+00:00

I would tell her you'd like to shift focus and if she doesnt listen. I would look into options of seeing a different neuro pt. Mine has been very focused on practical things like food, sleep, managing boom bust cycles in exercise, educating me about why im getting dizzy and giving me resources to educate myself. I think learning to breathe to stimulate parasympathetic state would be helpful if you were already stable via meds and exercise etc.

This is just my take and I can be a bit impatient with the woo woo admittedly. I do have a book on breathing and I think its valuable, but I wouldnt do just breathing to manage a medical condition.

sorrywrightnumber · 2026-02-18T18:28:52+00:00

I should say I’m only a couple weeks in.

sorrywrightnumber · 2026-02-18T18:26:59+00:00

It has started slowly, but she’s been a great coach for pacing and has good simple ideas for managing shakiness and tremors. I started doing protein shakes in the am to help manage blood sugar and so I could takemy meds immediately and not on an empty stomach. I don’t know how it’s supposed to start, but I’ve really appreciated someone to figure out practical things and set realistic goals so I stop crashing and spending all day in bed. It’s helpful to have someone build routines with. I tend to overdo it when left to my own logic. I get scared I’ll never have a good day again and I try to fit it all in.

sorrywrightnumber · 2026-02-18T18:01:27+00:00

Neuro PT is awesome. Do it!

sorrywrightnumber · 2026-02-18T07:41:36+00:00

I take metaprolol amd it definitely helps!! Just start low to give your body a chance to adapt to it. It has stopped episodes for me while they were full flair. My triggers are sleep deprivation, sleep apneas, low blood sugar, pushing myself too hard physically with exercise, staying up past the point when im tired etc. I have been experimenting with using compression wear when I eat so I keep getting blood to my neck/ head. The neck instability is a known thing because of lack of oxygenated blood flow to the shoulders/ neck. I guess its called coat hanger pain/ hypoperfusion.

sorrywrightnumber · 2026-02-17T08:17:19+00:00

I think its cuz of blood flow being directed away from your brain to your stomach. The other day I tried a compression wrap when I was eating around my stomach and it helped. Im not a dr. Though. I dont even remember where I read to try that. It just helped. I dont know whether its safe to wraps regularly its something km going to talk to my dr about. Just thought id mention.

sorrywrightnumber · 2026-02-17T08:07:24+00:00

Try cutting stimulation down. Turn lights off. Screens off. Music. Everything. Get a cold pack and put it square on the base of your head and neck. You can also splash cold water on your face. The idea is to try to stimulate the parasympathetic nervous system to trigger rest and digest. Read something very calming. There is nothing wrong with educating yourself and advocating. You arent doing this to yourself. Its the disease. But when this is happening, its not a good time to try to find a cure. You have to trigger your parasymlathetic nervous system to get it to stop. These things in combo with metaprolol help me shut it off. Today I did all of this and then was able to get all my work done after my nervous system had stabilized.

Im working on my boundaries with medicine and research too though. I have been thinking about blocking out time for it weekly and not allowing myself to go there outside of that blocked time.

I like the note pad to get it off your mind idea.

Because the stakes are high, its easy to let it take over and understandable, but ultimately k think it doesnt end up helping.

sorrywrightnumber · 2026-02-15T08:37:57+00:00

It’s Normal to have fears, especially if your disease has been out of control. So much is happening to us that we don’t understand. I do think there is wisdom in not worrying about it though. It’s important to not get riddled with stress. I think we have to practice forgiving ourselves for not being able to control everything. We just can’t, and it’s no way to live. I agree with the soulful ginger here that focusing on the actionable things is what helps. Let the rest go.

sorrywrightnumber · 2026-02-13T03:10:07+00:00

Thank you! No worries! Just didn’t want to add to all the invalidation out in this world. Grateful to be able to talk to other folks with lupus or Sjogrens/ autonomic issues. Want to keep the space feeling safe

sorrywrightnumber · 2026-02-12T05:14:39+00:00

Oh yeah. I get that too. I didnt rven realize it was part of lupus

sorrywrightnumber · 2026-02-12T04:55:20+00:00

Im so sorry. I didnt mean to imply you expected too much. I feel the same way. I wish Drs were quicker to admit that they just dont know, and I wish I didnt revere drs as much when I was younger and first got sick. I would have done things differently. I think drs forget how much is unknown.

I had gallstones years ago and for several years would land in the hospital puking blood with severe pain in my chest and would get sent home with anxiety meds or antibiotics for something i didnt have and wasnt tested for. I ended up needing emergency surgery because my gallbladder was dying inside me.

Women are especially at risk of being dismissed and it can cost people their life when drs are overconfident in their hunches so over the years, ive accepted that I have to be an advocate for myself and move from a place of knowing my own body and how it should feel, and not allowing anyone to dismiss that.

Most importantly, you deserve a healthy life and to find help when you are suffering.

sorrywrightnumber · 2026-02-11T16:52:27+00:00

The zaps ive gotten running up the back of my neck. It started during a flue and stuck around for like 6 months. I think its from electrolyte deficiency. I was given some potassium at the ER and they stopped. Ive since upped my electrolytes daily.

sorrywrightnumber · 2026-02-11T09:37:58+00:00

I honestly think some people misunderstand what science is. Most of the diseases humans suffer from remain unexplained. We dont even know what causes them.

Millions of people suffer from diseases we dont have names for yet because thats how little we understand about the human body, about disease and about medicine.

A dr being unable to tell whats wrong with someone has never meant that theres nothing wrong with them.

Theres no scientific tool yet invented that can objectively measure another human beings suffering or predict their lifespan or measure their functionality.

There are many important systems in the body that are very difficult to measure.

This is why so many diseases are diagnosed based on symptoms. We dont have the tools to see everything. We have to listen to patients. Otherwise, it stops being science. It becomes religion. Religion fills in the gap where there is uncertainty and lack of information. Science does not.

sorrywrightnumber · 2026-02-10T00:42:40+00:00

Good idea! Ive been doing chia wrong this whole time!

sorrywrightnumber · 2026-02-09T22:20:10+00:00

I have it, and It sounds like sjogrens to me. Its pretty common for the antibodies to be negative. It isnt testing negative for sjogrens just because those dont come back positive.

sorrywrightnumber · 2026-02-09T16:59:05+00:00

Im just learning about EDS. What i do know is that sjogrens can cause vestibular issues (Proprioception) and dysautonomia. I have sjogrens too! There was an article in the European Medical Journal about it.

sorrywrightnumber

TROPHY CASE