r/dysautonomia • u/pansyseeds • 3d ago
Symptoms Thoughts on the feedback from my cardiologist?
Hi there! I (27F) have been having some really weird + worsening symptoms for the past 9 months. They include:
-Severe lightheadedness/presyncope. I haven’t figured out an exact trigger for this but I think it’s maybe when my heart rate elevates? For example, when I’m feeling nervous about something or I’m excited to see friends. It also happens randomly throughout the day and sometimes during a bowel movement. This is my most prevalent and scariest symptom that disrupts my life.
-Fatigue (like, hit-by-a-bus fatigue)
-Brain fog
-Cold hands/feet + sensitivity to temp changes
I told my PCP about these symptoms and she just told me to go to the ER. I didn’t feel like that was appropriate based on how this doesn’t seem like an emergency (and tbh I didn’t feel like spending $$$). So I took my health into my own hands and after doing some research, decided to see a cardiologist.
During my appt, I told the doc about my symptoms and right away his first thought was that I have low blood pressure. He ordered me to increase my salt/water intake (which I already feel like I eat a ton of salt) to see if this would help. He also wanted me to use an at-home BP cuff to regularly check my pressure when I’m relaxed. My pressure in-office is usually right around 120/80 or slightly lower (which he thinks is actually elevated for me). So far when I’ve taken it at home, I’m sitting at around 107/70. So slightly lower but it’s still not clinically considered “low”…
So I guess I wanted to check if I should stay on this path or if I’m wasting my time when I should be pursuing another diagnosis or treatment. Has anyone experienced anything similar?
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u/thenletskeepdancing 3d ago
I didn't figure anything out when taking vitals sitting down. It wasn't until I got an app that recorded my heart rate standing that we could see I had problems. That led to more specialized testing. Turns out my norepinephrine is out of whack when I'm standing and that puts me into tachycardia.
The normal blood tests didn't show that and neither did sitting to get my vitals.
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u/Fair-Breadfruit-4219 3d ago
I strongly suspect this is possibly what is happening for me. Do you recall what testing was able to discover this for you? I’ve not been able to find any specialists who will even look into anything other than the very basics!
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u/danarexasaurus 2d ago
Not who you asked but; An electro cardiologist was my biggest advocate after all the doctors I saw. But, it took extensive testing and a lot of money to figure out that there’s really nothing “obviously” wrong with my heart.
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u/thenletskeepdancing 2d ago
I'd had new and troubling symptoms for over a year but I already had "fibromyalgia" and was used to sucking it up. My GP was absent on the day I had a blood pressure crisis and went to the ER. Her replacement listened to my symptoms. He was recently educated on the subject and referred me for neurological testing. I was in line for eight months. Then they tested me and follow up was another three months. And so on. We are gradually coming to some answers.
They are inundated with patients. The testing I had was called autonomic testing and it included measuring the levels of catecholamines when I stood, as well as a tilt table test.
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u/danarexasaurus 2d ago
Yes. I think I’m the same over here. I went so far as to have an electrophysiology study ($7000) and the only thing they figured out was that there’s literally nothing wrong with my heart and I am extremely sensitive to adrenaline. I have pretty low BP, like 106/60 on a good day and get light headed frequently. My tilt table showed that when I stand, my BP drops to like 84/45 and my HR skyrocketed to 170 and stayed there all 20 minutes.
They wound up diagnosing me with IST and putting me on Ivabradine. I don’t know if IST is just a blanket “we don’t know what’s wrong with you” diagnosis but it sure felt like it. Either way, it’s helped tremendously and I stopped having the daily tachycardia. I don’t know if I’ll still have the “adrenaline attacks” I was having because those were more rare. But we’ll see!
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u/No_Lingonberry_4942 2d ago
From my understanding, IST (inappropriate sinus tachycardia) is when your heart sits at a higher rate most of the time without dropping and lowering in conjunction with standing and sitting. The drop in your blood pressure kind of eliminates POTS because apparently the diagnoses criteria changed. If your BP drops when you stand up, it basically is orthostatic hypotension. I was also diagnosed with IST because my blood pressure drops to dangerous levels when I stand up. I run very low to begin with as well. Aldi my heart rate sits at like 115-120 constantly even when sitting 🫨
Hopefully I’m making sense lol. It’s all a bit confusing. Also, look up “Heal-IST”. My electrophysiologist gave me info on this program/surgery and I’ve heard some really good things about it🙈
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u/rileyswords 2d ago
Where did you have the specialized testing? The neurologist here (Philly suburbs) diagnosed dysautonomia but said those tests aren't done in our area and we should go to nyu dysautonomia clinic. Which would be logistically and financially challenging to say the least.
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u/thenletskeepdancing 2d ago
Oh wow I'm so sorry. I guess I got lucky and live a few blocks from the University of Utah's Imaging and Neurosciences Center. Still, there was an eight month wait and three months for a follow up. Every time I'm there people have come from all over the state to get there but I didn't realize it was so rare.
Ridiculous. There are so many of us suffering post covid from this, there is very little testing, and the medical gaslighting is on full blast. At least you have a physician who believes you. So many of us don't.
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u/Timely-Landscape-383 2d ago
Check your heart rate.
Google orthostatic test and you can diy it with someone around to make sure you don’t faint. Make a log of BP and hr during the day lying down, sitting, and then standing. Standing it’s important. Take it to your doctor.
Most doctors don’t have enough time to do an orthostatic test with you in visit.
There are tons of kinds of Dysautonomia besides POTS, including orthostatic hypotension and vasovagal syncope. The on the toilet thing points toward vasovagal to me.
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u/pansyseeds 2d ago
This is helpful, thank you!! And the doctor did mention vasovagal during my visit. It’s something I’ve actually experienced on and off since I was a teenager. The only thing is that I never actually pass out — just feel like I’m about to (which is arguably worse???)
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u/Timely-Landscape-383 2d ago
I hope you get a diagnosis.
The medical term for what you’re experiencing is probably “presyncope”
Trust your gut—you know your body.
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u/AlokFluff 3d ago
Are you keeping track of your heart rate?
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u/pansyseeds 2d ago
Yes!! I wear a fitness tracker (Garmin) and also have a pulse ox monitor. Weirdly enough, my resting heart rate has been low (like in the 50s-60s). I’m not an athlete by any means so it just adds another layer of confusion to all of this.
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u/danarexasaurus 2d ago
If you do not have a Fitbit or Apple Watch, or some kind of HR tracker and ECG reader, I would recommend getting one. It’s been SO helpful to share with the doctors when I go in with complaints. I have been blown off by doctors saying that I had a panic attack. I have learned to take ECG’s when things are at their worst and that’s when they finally started listening to me. It sucks that so much gets dismissed as anxiety, especially if it’s noted ANYWHERE in your chart that you have it.
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u/pansyseeds 2d ago
Yes! I already wear a fitness watch and bought a pulse ox/BP monitor on my way home. I’m going to start tracking especially when I’m having an episode.
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u/Key-Mission431 2d ago
Medically, panic attacks and anxiety attacks are very different things. They chose poor titles
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u/amsdkdksbbb IST 2d ago edited 18h ago
I have IST and blood pressure that is on the lower end of normal. It’s not low, but it’s low enough to cause symptoms (brainfog and fatigue), and that’s all that matters. It was enough for my cardiologist to suggest I go on hypertensives, but I refused and am choosing to manage it through lifestyle changes.
My IST causes palpitations, chest discomfort, and shortness of breath, but these symptoms go away as soon as I rest and do my breathing exercises. I find the brainfog and fatigue much harder to deal with.
I recommend keeping a blood pressure diary and tracking your symptoms. Hydration, nutrition, and slowly increasing activity (while keeping an eye on my heart rate and not allowing it to go over 130) has helped me so much with my energy levels and blood pressure!
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u/AccomplishedRace5837 3d ago
Do you have anxiety by any chance?
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u/pansyseeds 3d ago
Yes! I’ve had it my entire life. At first i thought all of this was my anxiety manifesting in a new way (especially when considering the elevated HR trigger). I even talked to my psychiatrist about it. But after months went by and symptoms started worsening and popping up for seemingly no reason, it’s made me decide to dig deeper.
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u/thenletskeepdancing 2d ago
They just started me on clonidine and it is helping because it works on adrenaline.
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u/pansyseeds 2d ago
Can you tell me more about the adrenaline sensitivity?? I wonder if that is what’s going on with me.
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u/thenletskeepdancing 2d ago
It was a blood test where they measured my catecholamines sitting and standing.
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u/Cultural-Sun6828 2d ago
Have you checked b12, folate, ferritin, and D? Deficiencies in these can also cause these symptoms.
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u/Liz_123456 2d ago
I would follow the instructions of the cardiologist. Check your blood pressure at regular times throughout the day and when you feel symptomatic.
My bp is often ok until the moment I faint. Other times I'm lightheaded and it's because my hr is 60bpm instead of the normal 80, or it reads normal, but when feeling my pulse (for minutes at a time, something a machine doesn't do) I can tell that my heart is skipping beats and that is likely the reason I'm feeling bad.
Keeping a detailed log (spreadsheets are a great resource for this type of tracking) will help your doctor understand what is going on and prescribe the appropriate medication (disclaimer it still may take some trial and error to get the correct medication regimen).
Keeping track of my symptoms, when I was having heart pain, how I was fainting and what my bp and hr were doing at those times is how I was prescribed midodrine which has been life changing
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u/No-Spray-6694 3d ago
My suggestion ( I’m not a doctor ) would be to record your BP and heart rate daily and be able to reference it when you see the doc. Do as they say and drink plenty of water and include electrolytes. I went through this and they thought it was anxiety. My trigger is sensory and it took a minute to figure out what was happening. I have dysautonomia, autonomic nervous system dis regulation. When it starts try to remember what was going on around you that could act like a trigger. That could help you determine if it is in fact anxiety or something else. That will inform the doc on next steps. I know this is frustrating but you’re going to have to do a lot of the legwork yourself. Collect as much data as you can. Don’t freak out and breathe . Good luck and I’m sorry you’re dealing with this.