help

[tigger2512]

I actually can't believe i found this site.  I have been having these "episodes" for 3 yrs now..i have seen every doc in every specialty and no one has an answer for me...i have had numerous stress tests and heart monitors.  I never had the "feeling of fainting" while wearing the monitor up until the last one..i had the fainting feeling 3 times and the heart monitor showed absolutely NOTHING.  I actually was sitting in the aisle of a supermarket it was so bad.

I get a very strange feeling sometimes...i feel "funny"..light headed NOT dizzy.  I feel like the lights get dim and i'm not there.  

There isn't any thing that causes this and i can go weeks and sometimes months without it happening and then it just does.

I'm afraid to go anywhere myself and my life has been h*** the last 3 years.  It started out of nowhere. 

The cardiologist put me on toprol xl 12.5 once a day and that's not helping so yesterday he raised it to 25 mg a day.  I do NOT have high blood pressure.

 I just don't know where to go or what to do at this point.  I made another neurologist appt for July because the last time i went to one they threw back to the cardiologist.

 I have no idea what is happening to me and everything i google (pretty sad that's how i have to get my own diagnosis) points to this and pots.   

[KiminOrlando]

You may have POTS. Try doing a poor man's tilt table test. Write down your blood pressure and pulse. Keep a diary. When you feel bad, take your bp and pulse while standing. If you have POTS, your heart monitor and stress tests will be normal. It is basically an electrical issue with your heart, brain and blood vessels. Only some doctors treat it, but many say they do. A POTS doctor will do a real tilt table test and collect real data, including blood work, but this will at least give you an idea. 

Ironically, Toporol is often used to treat it. I take it. The theory is that it keeps your heart from beating too fast and causing your heart to not have time to fill with blood before it pumps. If it can't fill full, your bp drops, which triggers your heart to beat faster, which lets your heart fill even less. Toporol or other beta blockers help break that cycle.

Google poor man's tilt table test or use the search feature on this site. 

I hope you find answers for your situation. I can't tell you the number of times I have been sitting in aisles of stores. The shoe department at Walmart is my safe space. The mega pack of toilet paper makes a great foot rest. 

POTS is a type of Dysautonomia so you may very well have googled your way into answers.

[CallieAndToby]

You have to see an autonomic / dysautonomia specialist. A normal cardiologist or neurologist (at least in my city) don't know anything. If you can get to a center but the waiting lists are beyond long. It sounds like you were put on a beta blocker, is your heart rate high? The problem is they do lower blood pressure but I had to take one to lower a constant state of tachycardia. 

[tigger2512]

Thank you,

   The EP doc had mentioned the tilt table test but nothing was happening with covid.  

    I'll see if the toporol helps for now.  Lucky for me I have a local Walmart because i don't go very far the last 3 years since this started. 

[CallieAndToby]

2 minutes ago, tigger2512 said:

Thank you,

   The EP doc had mentioned the tilt table test but nothing was happening with covid.  

    I'll see if the toporol helps for now.  Lucky for me I have a local Walmart because i don't go very far the last 3 years since this started. 

The tilt table test is a standard for testing, if you can do it, it may help guide towards an accurate diagnosis. There are many different types of Dysautonomia. And yes this Covid thing has made everything difficult. 

[David Smith]

My Dr used the attached NASA Lean Test to diagnose my POTS. It's like a poor man's Tilt Table Test that any one can do if they can measure you blood pressure and pulse. My Mother In Law found a machine to measure blood pressure and pulse at a second hand store. God bless you. 

NASA-Lean-Test-Instructions.pdf

[Pistol]

8 hours ago, KiminOrlando said:

If you have POTS, your heart monitor and stress tests will be normal.

@tigger2512 - if you have POTS your heart monitor may simply show sinus tachycardia, essentially a fast HR. In POTS the HR goes up when you stand, and stays up - on the monitor they cannot see WHY the HR goes up, so monitors often do not clarify a POTS diagnosis. Simply walking up a steep hill or getting excited can get your HR up like that. I had numerous monitors prior to my POTS diagnosis and they only showed tachycardia ( up to 160 BPM ) and PVC's - no one suspected POTS based on that alone. 

 

8 hours ago, tigger2512 said:

I get a very strange feeling sometimes...i feel "funny"..light headed NOT dizzy.  I feel like the lights get dim and i'm not there.  

This sounds exactly like presyncope - almost fainting. I have neuro-cardiogenic syncope ( NCS ) in addition to POTS, it makes me feel like that prior to passing out. I had one of these episodes during my first TTT: my HR sped up and then suddenly plummeted and I fainted. The symptoms you describe happen before I faint and often fainting can be avoided by me lying down or squatting on the floor ( I too have extensively studied the bottom shelves and even the floor in Walmart  ... ) 

For these symptoms they usually recommend the same treatment as for POTS: increase fluid and salt intake and wear compression hose. I would be surprised of no cardiologist had ever mentioned this to you. You may find drastic improvement from following these steps alone, and the beta blocker might hep as well. I was put on Metoprolol for the NCS diagnosis but in my case it was not enough, since I also have HPOTS. 

[tigger2512]

1 hour ago, Pistol said:

@tigger2512 - if you have POTS your heart monitor may simply show sinus tachycardia, essentially a fast HR. In POTS the HR goes up when you stand, and stays up - on the monitor they cannot see WHY the HR goes up, so monitors often do not clarify a POTS diagnosis. Simply walking up a steep hill or getting excited can get your HR up like that. I had numerous monitors prior to my POTS diagnosis and they only showed tachycardia ( up to 160 BPM ) and PVC's - no one suspected POTS based on that alone. 

 

This sounds exactly like presyncope - almost fainting. I have neuro-cardiogenic syncope ( NCS ) in addition to POTS, it makes me feel like that prior to passing out. I had one of these episodes during my first TTT: my HR sped up and then suddenly plummeted and I fainted. The symptoms you describe happen before I faint and often fainting can be avoided by me lying down or squatting on the floor ( I too have extensively studied the bottom shelves and even the floor in Walmart  ... ) 

For these symptoms they usually recommend the same treatment as for POTS: increase fluid and salt intake and wear compression hose. I would be surprised of no cardiologist had ever mentioned this to you. You may find drastic improvement from following these steps alone, and the beta blocker might hep as well. I was put on Metoprolol for the NCS diagnosis but in my case it was not enough, since I also have HPOTS. 

Hi,  Yes they did mention the salt intake and drinking more water.  I have tried that and now trying the increase of the toporol xl to 25 mg.  I was just never "truly" diagnosed with it and it came literally from nowhere.   3 years ago i was at my neighbors having coffee and everything went fuzzy and said i'm going to pass out...it was the worst feeling ever and i had never had it before and it hasn't stopped since...not all the time but i just never know when and i'm afraid to drive far alone or even go to a store myself.  

[tigger2512]

6 hours ago, David Smith said:

My Dr used the attached NASA Lean Test to diagnose my POTS. It's like a poor man's Tilt Table Test that any one can do if they can measure you blood pressure and pulse. My Mother In Law found a machine to measure blood pressure and pulse at a second hand store. God bless you. 

NASA-Lean-Test-Instructions.pdfUnavailable

I carry the bp machine and pulse ox in my handbag now!

[tigger2512]

6 hours ago, David Smith said:

My Dr used the attached NASA Lean Test to diagnose my POTS. It's like a poor man's Tilt Table Test that any one can do if they can measure you blood pressure and pulse. My Mother In Law found a machine to measure blood pressure and pulse at a second hand store. God bless you. 

NASA-Lean-Test-Instructions.pdfUnavailable

it says no  attachment available.

 

[cmep37]

Try this one and see if it works tigger - I really think it is worth doing as it will give you a good idea of how you would react to a TTT. 

PMTTT-Instructions.pdf (potscare.com)

[David Smith]

15 hours ago, tigger2512 said:

it says no  attachment available.

 

Hopefully this works 🙏