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WickedMindz

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Posts posted by WickedMindz

  1. On 5/28/2020 at 8:06 PM, Pistol said:

    @WickedMindz - yes, I have NCS as well as HPOTS. Eating a heavy meal ( think Thanksgiving or Christmas ) will divert the blood to the GI tract to aide in digestion, and away from the brain. This causes feeling tired and lazy in normal people but it can easily cause us to develop worsened symptoms, even fainting ( which I used to do generously ). That is why smaller but more frequent meals are recommended. eating more protein and less carbs has helped me with that as well. 

    Thanks for the information Pistol you’re always so helpful on here. 

  2. 1 minute ago, Pistol said:

    @WickedMindz@Sushi is right. Unfortunately most of us have to travel out of state for proper care by an autonomic specialist. That is not to say that your neurologist does not know how to treat you. As of recently there are more physicians that are willing to educate themselves about dysautonomia. In many cases though we get handed from one physician to the other b/c neither one knows what to do. In my case I was referred from one specialist to another and then sent back to my PCP, with a big bow on my head ( as in: here, you can have her back! ). I am just mentioning that in case you do not find proper treatment from your local doctors. IF that happens you might want to look into autonomic specialists. You can always PM me if you need help with that. But hopefully your doctor(s) know what to do. Good Luck!!!!

    Thank you!

  3. 23 hours ago, Pistol said:

    @WickedMindz - several things come to mind: I also passed out during my first TTT and was diagnosed with NCS. However - later I had another TTT, went to an autonomic specialist after that and was diagnosed with hyperadrenergic POTS in addition to NCS. The symptoms you describe in the above quote sound very similar to mine. In my case all cardiac work-up is normal too. Have you considered seeing an autonomic specialist? 

    I have but I honestly don’t know where to look to be honest. I’m not sure of many near me. My neurologist is the one who sent me for the TTT with the cardiologist. 

  4. 23 hours ago, Sushi said:

    Did you ever experiment to see if you are electromagnetically sensitive? I am and will get heart rhythm disturbances if I have a computer, phone, or iPad in contact with my body for any length of time. You are wearing a computer on your wrist so it would be an interesting experiment to take it off for a couple of days and see if anything changes.

    You know I didn’t even think of this. I’ll give it a try and see what happens. Thank you. 

  5. 1 minute ago, Sushi said:

    Yes, that could be confusing! I have NMH (basically the same diagnosis you have) and I also have Afib as confirmed many times by EKG. There can be a relationship in that many Afib episodes are triggered by the autonomic nervous system—my electrophysiologist thinks that mine are. But, your Apple Watch says sinus rhythm and it has good technology. When you get a random episode of tachycardia it is easy to tell if it is Afib, simply by feeling your pulse with your fingers. Afib has no pattern—it is “irregularly irregular.” The pulse feels chaotic. As @Pistol mentioned, if you really want to check it out, make an appointment with an electrophysiologist (rather than a general cardiologist as electrophysiologists specialize in heart rhythms) and ask for a holter monitor.

    Thank you. After my tilt table test I actually saw an electrophysiologist and he wasn’t too concerned about it. Last year I had a massive amount of tests done and wore a Holter monitor for a month. Even wore it while I was working out doing cardio anytime I felt anything odd I would hit a button when they went over the results with me they didn’t find anything wrong. It’s scary because randomly my heart starts beating fast I can feel it in my chest and my throat and I get tremors and dizziness but nobody has found out what the issue is besides the tilt table test that I had done. Cardiac wise cardiologist says my heart is good. Even had a CT calcium score done of my heart at the hospital back in August of 2019 and they said everything was good and my risk of heart attack was very low. 

  6. 41 minutes ago, Pistol said:

    Dear @WickedMindz - vasodepressor syncope - also called neuro-cardiogenic syncope, or NCS - is a dysautonomia.  you can read more about it here: 

    Regarding the afib - I have POTS, NCS and atrial flutter and can understand your confusion. Commonly if your cardiologist is suspecting afib he/she can order a halter monitor. This would show if you have episodes of afib when you are symptomatic. Personally I do not feel it when I have atrial flutter. Since this forum cannot give medical advice it is safest to bring these questions to your cardiologist. Also - if you are concerned regarding having POTS in addition to NCS you could ask your cardiologist to perform a Tilt table study. Please keep us updated on your progress!!!! Best wishes. 

    Thanks for your information. I had a bunch of cardiac tests done less than a year ago and everything was normal. As for the tilt table test I had one done back in September of 2019 and that’s when the results said what I mentioned above and after going unconscious and coming back that’s when I was in afib so I’ve already had a tilt table study done and according to the results it says vasodepressive syncope. I’m currently looking into finding a specialist near me that specializes more in this area. Thanks again for the reply!

  7.  I’m not sure if I even have an ANS issue or some form of dysautonomia but I get these bad flare ups of symptoms which are random. I could be sitting at my computer or watching TV and out of nowhere I start getting tachycardia and fast heart rate tremors dizziness headaches stomach issues etc. it’s completely random and I don’t know what triggers it as it seems to be random but I do notice sometimes the symptoms come on after eating sometimes but other times it could be I’m doing nothing and they come about. I had a tilt table test done a few months ago and after the doc gave me the nitroglycerin I went unconscious. Upon coming back to i then wound up going into atrial fibrillation which they had to give me meds to get me out of it. The doc said I didn’t have a fib as it was most likely due to me passing out due to a vasovagal issue? My 84 year old grandmother does have a fib though but according to the doc that did my test he wasn’t worried about it and claimed I didn’t have it. My concerns are that I am not sure if these random symptoms I’m getting are due to afib or due to dysautonomia.  I do have the Apple Watch series 5 that can detect afib and every time I get those weird symptoms I do an ECG on my watch but it never picks up that I have afib it says sinus rhythm. Looking at my test results from the tilt table test it says the following:

    Vasodepressive syncope- positive tilt table study for vasodepressive type syncope. 


    I also notice when these symptoms flare up one of my ears or sometimes both of them get bright red and warm to the touch and feel like they’re burning and on fire. I’m currently trying to find a doctor or specialist that can look into this more but I don’t know where to begin. Any thoughts from others with these issues would be a god send. Thank you!

  8. On 11/24/2019 at 12:31 AM, Derek1987 said:

    Yes. I actually had chest pain when i ate popeyes. I dont eat popeyes often but the last 2 times i ate it, my heart was racing. The heart pain came from when i was squatting down and i stood up. First time ive felt heart pain. Its as if i didnt take any medication. Just rolling in a different position in bed would make my heart race for a short time then calm back down like before i started medication. I wonder what it is in popeyes that really messes with me. 

    Crazy you mention that I had Popeyes tonight and my chest was hurting and heart rate was increased.

  9. That does not mean you don't have it.  When I had mine my blood pressure stayed the same as well as my heart rate it was then when they gave me nitroglycerin and tilted me up that I went unconscious and the doctor told me my heart rate spiked and then my blood pressure dropped and then my heart rate dropped.  He diagnosed me as Vasovagal Syncope which according to him is a form of POTS. Also went into Atrial Fibrillation when I came back too, talk about scary stuff. I am a 35 y/o male.

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