Sierra
Age: 23
Diagnosis: Neurally Mediated Syncope (formerly known as Neurocardiogenic Syncope)
Other Conditions: So far IST - Inappropriate Sinus Tachycardia, MVP - Mitral Valve Prolapse, and Sick Sinus Syndrome.
What was your journey to getting a diagnosis like?
The biggest struggle EVER! I've been passing out since I was 10 years old (over half my life). No one ever ran tests outside of basic tests in the ER, my pediatrician never mentioned it. I was just told I have Orthostatic Hypotension, and to take my time standing and increase salt. But I pass out sitting, walking, laying, etc. Nothing helped. At age 17 the heart palpitations and tachycardia started. In 2008 I saw a cardiologist who ran 2 tests while I was pregnant and pronounced me fine. Saw another in 2011 who said, "It's because you're pregnant, after delivery it'll go away." Never mind that I've had it since age 10 and definitely wasn't pregnant 99% of the time. Then it was "You're just out of shape." I wonder why when walking makes me dizzy. And "Well we just don't know so we can't treat you." The very LAST resort was the Tilt Table Test, which was positive, meaning I passed out. That was in November 2011. I didn't find out anything (other than it was positive) until my next appointment in February. At which time my doctor said it was "fine" but turned to the receptionist and told her to schedule me with my now electrophysiologist "ASAP due to asystole".
When I pass out, not only does my blood pressure plummet and I quit breathing, my heart stops momentarily. My doctors missed this many times. So basically I've spent 13 years being told I have one thing (or nothing) and told repeatedly it was just anxiety or all in my head and I didn't need a regular doctor, I needed medicated and therapy. Even though I'm physically drained and can hardly function at a reasonable level (since it took so long to "find"), I'm relieved I'm finally getting answers. I just wish it hadn't taken 13 years, 3 states, 2 ERs, 2 Pediatrician groups, 1 Family Practice doctor, 3 Gynecologists (the only ones who would refer me to cardiology) and 2 Cardiologists to get the diagnosis and send me to a Neurologist and Electrophysiologist. And the diagnosing has only just begun.
What is your biggest struggle with Dysautonomia?
Right now it's a bit of everything. Parenting is hard, I don't have the energy to chase my kids or other simple things. My husband helps SO much, I honestly couldn't do it without him, on top of him being our sole source of income since simply being out of the house and upright for 5 days will put me flat on my back in bed for 10. It's a strain on my relationship too since I'm so dependent on him.
What are your top three treatments that help you function daily?
Currently lots of rest (starting meds in 2 days). Support from family/friends. Avoiding triggers. I'm by no means functioning "normally" but I can get out infrequently and sit up or outside and help a little bit. Hopefully my level of function will increase now.
Who has inspired you most on your journey?
As silly as it may sound, my children. Even when I just wanted to give up fighting for help or in general, they are what kept me strongest.
What would you like to say to the public at large about your situation and Dysautonomia?
Simply believing in me is all I ask. You don't have to understand what I'm saying, even I don't understand it all. But don't assume I feel great or am healthy just because I look it. This one day you see me out, smiling and socializing, if I'm not dizzy right now, I'll still be in bed 1 to 2 days depending on if I say the whole time or moved/walked. And sometimes I'm actively fighting dizziness in front of you but trying to hide it.
What advice would you give to a newly diagnosed patient?
Surround yourself with support. Whether it be online or in real life. Individuals or groups. Trust yourself and don't let anyone bully you, whether it be medical professionals or individuals. The world may be mostly deaf to uncommon/invisible illnesses but you can still be heard. Fight for yourself and never settle for less than you deserve.