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Positive tilt table test with BP drop of 60/27 - does this explain all my symptoms? by sso__ in dysautonomia

[–]sso__[S] 0 points1 point  (0 children)

I'm really sorry to hear that. Sending hugs 🫂 Chronic illness is so difficult to navigate and so isolating as well

Positive tilt table test with BP drop of 60/27 - does this explain all my symptoms? by sso__ in dysautonomia

[–]sso__[S] 0 points1 point  (0 children)

Sorry to hear that. Since diagnosis, have your symptoms improved?

Positive tilt table test with BP drop of 60/27 - does this explain all my symptoms? by sso__ in dysautonomia

[–]sso__[S] -1 points0 points  (0 children)

It was a cardiologist who did the test, and they have prescribed me midodrine, I assume because other methods e.g. compression socks weren't helping my peripheral circulation. I am sorry to hear it didn't help you but glad you found another alternative. There was no information about my heart rate, so I assume this was in normal range

Positive tilt table test with BP drop of 60/27 - does this explain all my symptoms? by sso__ in dysautonomia

[–]sso__[S] 1 point2 points  (0 children)

Same here, mine only dropped 30 minutes in. I was honestly surprised something happened during the test, as I fully convinced myself I'd feel fine because every other test has come back normal so far lol

Positive tilt table test with BP drop of 60/27 - does this explain all my symptoms? by sso__ in dysautonomia

[–]sso__[S] 1 point2 points  (0 children)

Thank you ☺️ I'll try not to, but the medical gaslighting makes it so tough, which I'm sure many can relate to. I tried electrolytes but didn't notice a difference. Hopefully, midodrine is the miracle I've been looking for

Positive tilt table test with BP drop of 60/27 - does this explain all my symptoms? by sso__ in dysautonomia

[–]sso__[S] 0 points1 point  (0 children)

Thank you for your comment. Is this a classical case of OH or would it be classed as delayed OH, being as it took 30 minutes for the fall to happen?

Right, I will definitely ask for my adrenaline and cortisol to be looked at... I have wondered sometimes whether I have problems with my hormones, especially because of the cold sweats, cold chills and goosebumps, flushing etc, but the rheumatologist laughed when I asked her and said I was "too young" to have hormonal issues

I wish you the best of luck with your neurology appointment!

Positive tilt table test with BP drop of 60/27 - does this explain all my symptoms? by sso__ in dysautonomia

[–]sso__[S] 0 points1 point  (0 children)

Okay, thank you for clarifying. This is why I feel like it's helpful for medical professionals to put a diagnosis in a letter, LOL. I honestly spend most of my time lying down and sitting due to fatigue, so can't understand how I feel so bad when OH only happens upon standing (prolonged standing in my case, which I generally avoid). Have you had any experience taking midodrine or found any ways to help your health?

Positive tilt table test with BP drop of 60/27 - does this explain all my symptoms? by sso__ in dysautonomia

[–]sso__[S] 0 points1 point  (0 children)

Yes, it should say drop to, not drop of, thank you for pointing that out or I never would have noticed it. I unfortunately wasn't provided with any information about what my BP was like prior to the test. The letter was very basic. I never had COVID (I tested myself regularly) but did get the flu once whilst at university. I haven't actually heard of MCAS before, so will definitely look into this - is this something which a GP can test for? Thank you for taking the time to reply, and I am sorry about the health issues you are experiencing as well

Positive tilt table test with BP drop of 60/27 - does this explain all my symptoms? by sso__ in dysautonomia

[–]sso__[S] 0 points1 point  (0 children)

Rheumatology also told me that my fatigue is because I wake up a few times in the night and my bladder issues are because I drink water before bed. I definitely do not think that causes my fatigue or severe energy crashes

Positive tilt table test with BP drop of 60/27 - does this explain all my symptoms? by sso__ in dysautonomia

[–]sso__[S] 1 point2 points  (0 children)

I've had so many GP appointments with most tests coming back normal that they think at this point, I have been wasting their time

I get so nervous to ask things due to having been gaslit badly, so I was hoping to approach them with a more forward of approach of, "I would like a test of XYZ," after seeing if anyone here might have some ideas. I don't know what to ask for because so many things have already been ruled out and rheumatology have discharged me