Do I have POTS or Panic attack?

Posted by camilaleon674 @camilaleon674, Oct 31 5:40pm

Hi, I’m Camila. I’m 23 years old and have been experiencing fainting episodes since I was 13. The first incident happened at school during a lesson. I started feeling dizzy, and the symptoms worsened when I tried to stand up, leading me to faint. I lost control of my body and remember closing my eyes. I could hear what was happening around me, but my body didn’t respond.

Over the years, I underwent various tests, including a Holter monitor, an echocardiogram, a brain and neck MRI, angioresonance imaging, a tilt test without medication, and multiple blood tests. All the results came back negative, leaving the doctors unable to identify a cause.

Life carried on, and I didn’t think much about fainting again. However, after about four years, the symptoms returned, much more aggressively. I felt extremely dizzy and couldn’t sit or stand up without feeling faint. Doctors repeatedly tried to help me sit up, but each attempt triggered pre-syncope and syncope. I found it extremely hard to communicate what I was experiencing.

In the months that followed, additional symptoms emerged. I began experiencing frequent brain fog, which made it difficult to think quickly or remember things easily. (I want to note that I speak three languages—Spanish, my native language, as well as English and Italian.) During my first episode in 2024, I couldn’t find words in Italian, even though I could understand everything; I just couldn’t respond after the sincopi episodes.

Other symptoms during these episodes include chest pain on the left side, jaw pain, tingling in my arms, shaking, hyperventilation, and concentration issues in daily life, such as blacking out momentarily when I stand up.

The last time I fainted, I experienced all of these symptoms but was a bit more prepared since I could tell when my body wasn’t feeling right. I quickly used a blood pressure monitor and an oxygen monitor. Before fainting, I noticed that my heart rate was elevated, between 120 and 140 bpm, for about 4 to 5 minutes. Then, it suddenly dropped to around 50 bpm, and I began to lose control of my body. I lay down on the floor while my father raised my legs. I was shaking a lot, but after several minutes with my legs elevated, my heart rate returned to normal, and I started feeling better.

Doctors have suggested it might be panic attacks, but I don’t feel detached from reality when this happens. I’m not afraid of death itself, haven’t had any psychological trauma or triggering event, and don’t live in constant fear of fainting. These episodes seem to come on spontaneously—on the metro, at home, at university, at work, or anywhere else.

Maybe my history can help others that feel the same, I heard about POTS. I am not sure if I have it or it is just panic attacks since young age.

Interested in more discussions like this? Go to the Heart Rhythm Conditions Support Group.

Doctors seem to blame anxiety or panic when they cannot come up with an answer. This does not sound like a panic attack to me. I hope you can keep going to find the right doctor.

Is Lyme a possibility? Have you had COVID?

Any chance of epilepsy?

Just throwing things out there. One of my kids was like this and got better- just to give you hope. It is really difficult and the key is to find the right doctor. I would suggest a functional medicine or intergrative medicine doctor who can think outside the box and about the whole body, not parts.

You might also try to find a dysautonomia clinic. They do exist but are few and far between. So sorry. Believe in yourself!

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There is such a things as 'sick sinus syndrome.' You might find, with a more concerted effort on a modern cardiologist/electrophysiologist's help, that this is what you have:
https://www.mayoclinic.org/diseases-conditions/sick-sinus-syndrome/symptoms-causes/syc-20377554
I don't see that you have POTS, based on your descriptive history above.

Your episodes are infrequent. This tells me that your arrythmia is paroxysmal in nature, and if that is the case it's no wonder the Holter and other diagnostics haven't pinpointed it. In fact, you have have either atrial fibrillation or atrial flutter, although flutter tends to stick around. It likes itself, and will not revert, at least not easily.

I don't know much about Loop Recorders (never had to look, never been recommended to me, only Holter Monitors, and mine were the older multi-corded variety....a pain), but it seems to me you might need to be monitored for a month or three. They need to be able to see the morphology of your arrhythmia, and it seems you don't get them frequently enough for them to catch them so far. It's just a shrug for them. Not that nobody is interested, at least no enough, but their efforts to monitor you have not been productive.

Some severe arrhythmia, and certainly any infarct, will produce troponin, an enzyme strongly associated with damaged cardiac tissue....the myocytes. If no blood tests have shown elevated levels of troponin, then you're not sustaining any damage to the heart muscles, and that is encouraging.

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How long did you wear a Holter monitor? I was not clear on how often episodes occur, more recently. I wore a patch monitor for a month. Holter monitor for two weeks in the past. I had PVC's most of my life premenstrually so timed the Holter for that.

If you have not worn a monitor for long enough to catch an episode, @glaming gives the best advice. Try to get it on record. You could also use a smartwatch or buy a Kardia though only a patch monitor or Holter can catch the heart action before you faint.

Your other symptoms led me to the other suggestions that I made above, including Lyme, long COVID, and dysautonomia and the idea of consulting functional/integrative medicine.

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You present with these symptoms starting very young age 13 and then disappearing for 4 years and then reappearing with a vengeance. You have had tilt table test which would be looking for POTS, Holter monitor looking for arrhythmias which were negative. negative ecg , blood tests, MRI, angiogram among other tests all negative. Nothing suggests you have any heart rhythm issues nor does it suggest Sick Sinus Syndrome which is very rare in young people and is associated with arrhythmias which you do not document. You present with rapid heart rate changes associated with neuropsychiatric issues with brain fog, communication problems/inability to talk during these episodes including pre-syncope and syncope as well as tremors and pain radiating, fainting/blacking out. Again you do not document any arrhythmias like Afib or Aflutter so that seems to be a non issue.
Panic attacks can cause many if not all of these problems. But even with that "loose" label what causes theses events? They can be organic as in a neurotoxin or viruses/bacterial infections like Lyme disease or mold in the home, school or work place or maybe even autoimmune. But even if an autoimmune what is the trigger for an autoimmune disease. Or they can be psychiatric issues in origin. My brother is a forensic PhD psychologist and he says the brain response to organic or psychiatric issues is the same. I would agree with @windyshores seeing a good functional medicine MD looking into a comprehensive neurological/neuropsychiatric evaluation as well a medical tests that would include pathologies like Lyme or mold, dysautonomia or other pathologies unknown to me. The one thing you do not present with is any heart rhythm issues which is what this group is about.
By the way Lyme disease and mold toxins can both cause arrhythmias but you would very likely have numerous other symptoms with the arrhythmia if you had lyme or mold toxins.

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Thank you all for your answers! @harveywj @windyshores @gloaming

I really appreciate it! It is true that most of the symtoms seems like panic attacks. However, my life was normal when I was 13. I didn't have any problems at school or with my family. Neither a trauma or shocking experience. So this diagnost doesn't make me feel sure. Exactly now I face tachicardia while eating, 135bpm, and it takes some minutes to moderate to 85bpm. Totally unexpected !
I could find a doctor which is specialice on dysautonomy, I hope to get a diagnose asap because it is significantly affecting me in daily life. Eventually I will post what the doctor says, wish me good luck 🥰 thank you again 🥰

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Note that 135 BPM technically called tachycardia is considered an arrhythmia. But given the constellation of your symptoms I would not focus on this as solely a heart problem. Something no doubt is causing the dis-regulation of your autonomic nervous system or some other part of your body.
This happened to me in March 2004 when I was 56 years old. I was in top physical condition when my first symptom started with muscle twitches. In the next few months the symptoms started to fill a page and the neurologist I was seeing diagnosed me with a motor neuron disease called innervation re-innervation. I said what about all the other symptoms. He gave me brain MRI for the headaches. Told me to see a my PCP for the stomach/GI issues. He tried to separate out all the other problems. I left his care and ended up seeing a top lyme specialist and he started me on antibiotics immediately based on symptoms. I was fed antibiotics like candy. September I went to the ER with a HR of 300. I was in aflutter. I continued to decline. For the next 2 years I was treated by a 2 more top "lyme literate specialists". Aflutter came and went. Finally after 2 1/2 years since my 1st diagnosis I saw an MD who diagnosed me with mold from my house. He ran medical tests that nobody else had done. Many of them abnormal for endocrine system problems. We tested our house and it was high for toxic mold. We moved out and cleaned the house and threw away a lot of cross contaminated things. I started taking a detox protocol that removed the fat soluble toxins from my blood. 6 months later I was 95% healed. It was many years later that heart arrhythmias re-entered my life but this time is was genetics I shared with my brother and father who also had rhythm issues.
I am telling you this story not to talk you into thinking you have mold problems but to stress with all of your symptoms you have it should not go unnoticed that maybe they are all related to the same diagnosis.

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@harveywj

Note that 135 BPM technically called tachycardia is considered an arrhythmia. But given the constellation of your symptoms I would not focus on this as solely a heart problem. Something no doubt is causing the dis-regulation of your autonomic nervous system or some other part of your body.
This happened to me in March 2004 when I was 56 years old. I was in top physical condition when my first symptom started with muscle twitches. In the next few months the symptoms started to fill a page and the neurologist I was seeing diagnosed me with a motor neuron disease called innervation re-innervation. I said what about all the other symptoms. He gave me brain MRI for the headaches. Told me to see a my PCP for the stomach/GI issues. He tried to separate out all the other problems. I left his care and ended up seeing a top lyme specialist and he started me on antibiotics immediately based on symptoms. I was fed antibiotics like candy. September I went to the ER with a HR of 300. I was in aflutter. I continued to decline. For the next 2 years I was treated by a 2 more top "lyme literate specialists". Aflutter came and went. Finally after 2 1/2 years since my 1st diagnosis I saw an MD who diagnosed me with mold from my house. He ran medical tests that nobody else had done. Many of them abnormal for endocrine system problems. We tested our house and it was high for toxic mold. We moved out and cleaned the house and threw away a lot of cross contaminated things. I started taking a detox protocol that removed the fat soluble toxins from my blood. 6 months later I was 95% healed. It was many years later that heart arrhythmias re-entered my life but this time is was genetics I shared with my brother and father who also had rhythm issues.
I am telling you this story not to talk you into thinking you have mold problems but to stress with all of your symptoms you have it should not go unnoticed that maybe they are all related to the same diagnosis.

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I am sure @harveywj will agree, that a functional medicine (or integrative medicine) doctor may be your best approach, as I mentioned before.

You can try to address each symptom separately but the MD's in functional or integrative medicine will look at the whole picture.

These providers do not need to conflict with other providers but often their insights are invaluable and they have testing that is not accessible through more mainstream doctors.

ps As for Lyme, testing interpretation is controversial. Get a Western Blot not an Elisa if you can.

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