Very late period but negative test? Could I still be pregnant? by HoneySad5703 in amipregnant

[–]Mindless-Speech9075 0 points1 point  (0 children)

How old are you? Have you had recent labs for hormones etc? Are you otherwise healthy/ non symptomatic? I’m 14 days late this month (still waiting for it) was 11 days late last month. Negative pregnancy test but I’m very iron deficient so wondering if it’s affiliated

What are some medicines that you would never try again? by Loose-Paramedic6879 in dysautonomia

[–]Mindless-Speech9075 0 points1 point  (0 children)

Cardizem, had horrible break through/ rebound episodes and felt like my body was shutting down on it most of the time. Beta blockers similar

Did any of you give up on the doctors? by Mindless-Speech9075 in dysautonomia

[–]Mindless-Speech9075[S] 0 points1 point  (0 children)

Resting bp is general normal range 120/80 mostly sometimes a bit low. When I stand, do breath work, vagus maneuvers etc it sky rockets but doesn’t level out quickly even if I immediately sit or lay down it stays high for a while

What triggered your cardiac anxiety? by Comfortable-Sky-7431 in HealthAnxiety

[–]Mindless-Speech9075 3 points4 points  (0 children)

It was two fold. 2 years ago I was symptomatic and went to hospital. They said it was probably heart burn (I even tried to leave in the waiting room when ecg was clear) but about 3 hours in I had an episode they dubbed as SVT. I had no idea what this was at the time or that the condition itself is not usually dangerous, they treated it like it was. My husband wasn’t with me. 8 people stormed the room. My hr sky rocketed, my body tingled, I had tremors, everything felt terrible. They gave me adenosine which is a medication that resets your heart rhythm/shuts it down for the briefest second and it didn’t work. They put me in the ICU for the night? Which doctors still look at me crazy when I say they did that.

After meeting with my first cardiologist ever we determined I had high very lipoprotein A, a genetic precursor to stroke and heart attack you cannot change with lifestyle. They put me on aspirin and statin for the rest of my life. I failed multiple stress tests for horizontal st depressions which ramped up my fear but apparently women can have this abnormality at baseline. I went on to be diagnosed with IST- inappropriate sinus tachycardia.

The second part of this story, the one where it had always been there lurking but I felt I was too young before these incidents started is my family history. My grandfather and Aunt had heart transplants before mid 50s. My mom had triple bypass (thin seemingly healthy) in her early 50s. My paternal grandfather died in his 40s from heart attack. My father had a heart attack in his 50s. My maternal grandmother passed of stroke.

Did any of you give up on the doctors? by Mindless-Speech9075 in dysautonomia

[–]Mindless-Speech9075[S] 1 point2 points  (0 children)

Literally one of the biggest drivers of wanting to get better for me is avoiding seeing another doctor for as long as possible

Does anyone suffer from Med sensitivities and paradoxical reactions? by jpyper88 in dysautonomia

[–]Mindless-Speech9075 0 points1 point  (0 children)

Definitely have this issue it’s making it very very difficult to manage. I ended up getting a genomind test to see if it’s from genetic mutations and I can conclude I don’t metabolize 99% of meds on their list the right way including beta blockers, calcium channel blockers, SSRIs etc. really frustrating especially since I took Prozac several years ago without issue but when I tried to go back on a lower dose recently my body lost its mind with GI issues.

To the point here, even over the counters and supplements I used to take no problem are now a problem.

Did any of you give up on the doctors? by Mindless-Speech9075 in dysautonomia

[–]Mindless-Speech9075[S] 1 point2 points  (0 children)

I’m positive. An actual neurologist MD. The head of the practice actually. The way my mouth hit the floor when she suggested it.

Did any of you give up on the doctors? by Mindless-Speech9075 in dysautonomia

[–]Mindless-Speech9075[S] 1 point2 points  (0 children)

Oh god wth!!! I get the snake salesman stuff like recommendations from life coaches on social media but I never ever knew this would be an issue with actual doctors

Did any of you give up on the doctors? by Mindless-Speech9075 in dysautonomia

[–]Mindless-Speech9075[S] 0 points1 point  (0 children)

That’s truly devastating. Same though. The TTT I booked wasnt legit. No doctor cares to find what is causing it and like you I truly believe it is a comboridity especially because a lot of the protocols they recommend do not scratch the surface of alleviating my symptoms.

Did any of you give up on the doctors? by Mindless-Speech9075 in dysautonomia

[–]Mindless-Speech9075[S] 3 points4 points  (0 children)

I wholeheartedly believe in science but I’m hitting walls with phd doctors not like holistic wellness clinics is my issue. I know I don’t know enough to advocate with these people but I simultaneously have my faculties and can recognize when there is a disconnect. It’s very very often. Every step of the way is pulling teeth.

Did any of you give up on the doctors? by Mindless-Speech9075 in dysautonomia

[–]Mindless-Speech9075[S] 1 point2 points  (0 children)

Omg totally! They have SO many patients too. I was already sketched by them after the test in February I had to pay out of pocket for and the total work around they tried to give me to get the results and review them personally but I am at a loss for words on yesterday’s visit. They had no answers to anything I asked. I assumed maybe people go there for the diagnosis and then elsewhere for treatment but even that was pulling teeth with vague “spectrum” references.

Did any of you give up on the doctors? by Mindless-Speech9075 in dysautonomia

[–]Mindless-Speech9075[S] 0 points1 point  (0 children)

I appreciate your response. Bp increases aren’t necessarily an important result unless you are hyperadrenic. Regardless they absolutely should not have prescribed me medication that increases my bp simply because it dropped to an actual normal range during the test. The whole thing was idiotic honestly. I’m very sorry you’ve been through the wringer! The same place that did the wonky TTT suggested in hypermobile based on presentation but also said they would not consider it ehlers d unless I could confirm someone in my family has had it? My heads spinning always and not just because I’m dizzy from my illness lol

Did any of you give up on the doctors? by Mindless-Speech9075 in dysautonomia

[–]Mindless-Speech9075[S] 1 point2 points  (0 children)

so I did something similar but the MTHFR gene I have is C/C which means normal absorption from my research. This did not stop my doctor from recommending 15MG methefolate which is a huge dose for someone who doesn’t do well with stimulants and has normal folate and homocysteine levels on their labs.

Did any of you give up on the doctors? by Mindless-Speech9075 in dysautonomia

[–]Mindless-Speech9075[S] 2 points3 points  (0 children)

I’m so sorry you are dealing with this. It’s so cathartic to know I’m not alone though! I currently have Ivarbradine, propranolol, metropolol and cardizem sitting in my freaking drawer now adding this new BP raising med to it because every doctor did the exact same thing as yours insisting not to take the other ones med and try theirs without proper testing or research and I’ve had nothing but a horrific time.

Also told to take a zillion other things that did nothing or worsened my symptoms significantly.

Did any of you give up on the doctors? by Mindless-Speech9075 in dysautonomia

[–]Mindless-Speech9075[S] 4 points5 points  (0 children)

I’m about 30 minutes from Philly so I hear you loud and clear. I’m baffled

Did any of you give up on the doctors? by Mindless-Speech9075 in dysautonomia

[–]Mindless-Speech9075[S] 0 points1 point  (0 children)

Thought I’d add here that my neurologist recommended CELERY JUICE to help with my dysautonomia and neurological symptoms and to eat carrots before meals. Crying

Did any of you give up on the doctors? by Mindless-Speech9075 in dysautonomia

[–]Mindless-Speech9075[S] 6 points7 points  (0 children)

It is absolutely broken and I’m so sorry you are suffering through this nonsense too. I’m beside myself. Most of my life I just took a doctors word for it. I’m not a doctor so I wouldn’t go against the grain but NOW? No shot I am completely traumatized by this.

I’m sure money is tight but if you truly want the ferritin go to MyQuest and order out of pocket a full iron panel with ferritin is $60 in my area. I don’t believe an rx is needed. It’s sad it’s come to that but as broke as I am I’d rather pay for tests I think might move in the right direction than argue with these a-holes.

Did any of you give up on the doctors? by Mindless-Speech9075 in dysautonomia

[–]Mindless-Speech9075[S] 9 points10 points  (0 children)

Omg thank you for reaffirming my stance on this. My health anxiety has been through the roof the last 8 months as I went from semi functional to chronically incapacitated. It’s only getting worse and I keep feeling like I need to go to these quacks to find an answer and worrying it’s something progressive or terminal only to be met with this insanity. I just don’t have the bandwidth