Help All Autonomic Testing Normal

[HCD77]

My specialist says I don’t have POTS my tilt table was in the gray zone meaning only went up 27 bpm . I watch my heart rate go up upon standing 30 plus beats a minute of oximeter. I have all the symptoms of POTS. I can’t even get out of bed in the morning. Also it shows on my Apple Watch . The MST showed I have perfusion impairment or chronic fatigue. My renal Doppler also showed Nutcracker syndrome a rare condition which can cause POTS. I am shocked that there is really nothing going on ...then why do I feel so bad and has to go on long term disability. I’m just at a loss now. I’m going to see another specialist next week a neurologist. I still have all the symptoms of pots though ! 

[POTSius]

Maybe you have another type of dysautonomia?

I read about something called OCHOS recently

Don't know where besides the hospital below you can get tested for this though

"Orthostatic Cerebral Hypoperfusion Syndrome (OCHOS) is a syndrome of orthostatic intolerance associated with low CBFv that Novak first described in 2016. In this syndrome, the orthostatic cerebral blood flow is reduced while all other variables are normal. OCHOS can be disabling. Many patients respond to volume expansion or cerebral vasodilators, but the optimal therapy has yet to be found."

"We can now diagnose people who were previously thought to have psychiatric illness or had no diagnosis at all,” said Novak, of Brigham and Women’s Hospital Department of Neurology, one of only a few departments in the US  that has a Division of Autonomic Neurology."

https://www.brighamhealthonamission.org/2019/06/03/expanded-autonomic-testing-helps-to-pinpoint-causes-of-orthostatic-intolerance/

 

Same article talks about something called Hypocapnic cerebral hypoperfusion, which also doesn't have tachycardia (he describes it as POTS without the T)

[Pistol]

Dear @HCD77 - I am sorry, I know you were excited to get answers!!!! This happened to me too when I first started with POTS symptoms. After my first TTT was positive for NCS my PCP had referred me to a major autonomic clinic for autonomic testing. They did the usual tests and everything was normal. They told me I did not have dysautonomia and sent me home on salt tablets. A year later I was seen by another autonomic specialist and he diagnosed me with HPOTS, based on my significant symptoms and he did neurotransmitters and they confirmed his diagnosis. Since then I have been with him for 8 years. ---

I listened to Dr Grubb's lecture on dysautonomia during the DI conference last month. He was asked if people can have POTS despite a normal TTT, and he confirmed what is already known amongst the specialists in dysautonomia: a TTT is not the golden standard, there can be false positives and false negatives, and a TTT does not really mimic all of the triggers that send us into a tailspin. A physician who only looks at the numbers ( "sorry - you missed POTS by 3 BPM!" - 😬) and does not take the day-to-day symptoms into consideration is simply not a good physician.

I am glad you are seeing another specialist, hopefully he will understand that your symptoms sound like POTS, despite the 27 BPM. --- BTW - my second TTT was determined to be normal, based on the opinion of the EP that read it. However - once I saw the autonomic specialist he told me that it was clearly showing POTS, the cardiologist just did not know how to read it. As you see - it is not uncommon to not have significant changes during the TTT but in real life be disabled from POTS! Don't put too much significance into this specialist. Despite the TTT he still needs to address all of your symptoms, and the treatment for those should be the same as if you were diagnosed with POTS. If he does not work with you and the neurologist does not either then you should see another specialist. IMO a physician who treats people based on numbers should be in mathematics - not in the business of treating PEOPLE! 

 

[MomtoGiuliana]

27 bpm is awfully close to the official definition of POTS.  If you have symptoms too, it's hard to understand why this would be dismissed.  My EP has always said dysautonomia is ultimately diagnosed based not simply on TTT but also symptoms (and of course ruling out other conditions with other testing).  I don't meet the diagnostic criteria for POTS every day, I don't think that means I have POTS on some days and not on others.  Can you keep a record of hr at home to share with this next specialist?

[Muon]

I kept records of measurements. Sometimes it showed a HR change of near, but below 30bpm despite heavy symptoms. But taking many occasions into account of >30bpm within 10 min gives you a different view on the situation. I took measurements on healthy people as well as reference to check if the device kept working properly. Showed it to a specialist.

[Ashc]

12 hours ago, Muon said:

Showed it to a specialist.

What did your specialist say?

[Muon]

12 hours ago, Ashc said:

What did your specialist say?

That it's POTS.

[HCD77]

Thank you everyone for your help ! I have been so depressed about the whole appt , I am sorry I haven’t responded sooner. My son drove all the way from Ohio to Texas to take me to my appointment because I had no one to even drive me .  I really was hoping for a diagnosis and a treatment plan to give me a better quality of life and get back to work. He is suppose to be so good and is even on this website . He didn’t consider my symptoms at all only the tests. He did give me lots of treatment choices 

1. low dose of midodrine  

2. manage it like POTS

3. Refer me to Dr. Vernino, Mayo, Vanderbilt 

He won’t support Long term disability because I don’t have a POTS diagnosis so that is really bad I’m going to lose my disability. I don’t have enough credits for SSDI. 
 

I have a telemedicine appt with neurologist next week. Hopefully it will go better. 
 

I discontinued meds before test , but I drank my usual salted water , electrolyte drink, and had on low cut compression socks 15-20 mmhg. I keep thinking maybe that effected it. Also I was only standing for 10 minutes because of Covid the tech said. 
 

He also mentioned a rare disease called Nutcracker Syndrome that can cause POTS. 
 

Any more suggestions , even for next appointment. I’m just devastated and lost . Thank you for your support ! 
 

 

 

 

 

 

 

[POTSius]

1 hour ago, HCD77 said:

I discontinued meds before test , but I drank my usual salted water , electrolyte drink, and had on low cut compression socks 15-20 mmhg. I keep thinking maybe that effected it. Also I was only standing for 10 minutes because of Covid the tech said. 

I think you should retest without those things.

Those definitely seem like things that could falsely make you seem better than you were

If you were at 27 before, does not seem crazy that you would be 30+ without those aids

[HCD77]

  These reading are without meds, no salt/ fluids or electrolyte drinks or compression hose/socks . I am documenting some orthostatic vitals to show specialist on Thursday . These were recorded in early morning because I wake up with insomnia every night  between 2-3 and I am most symptomatic . My tilt was in the gray zone so I wasn’t diagnosed with POTS even though I have symptoms that mimic POTS daily. Each reading the heart rate increased 30 plus beats from lying down to standing. The second reading after 15 minutes I felt like I was going to pass out , very nauseated , neck and back pain , numbness in feet and hands , loss of balance , and palpitations. 
 

First Reading 

Measured at 3:45 am 

Lying down 5 min  BP 91/63 HR 71

Sitting 2 min   BP 109/80 HR 79

Standing 5 min BP 96/77 HR 94

Standing 10 min BP 104/80 HR 102

difference in HR 71-102  31 bpm 

Second Reading 

6:30 am 

Lying down  5 min BP 126/77 HR 70

Sitting 2 min BP 124/87 HR 80

Standing 5 min BP 111/81 HR 105

Standing 10 min BP 103/73 HR 112

Standing 15 min BP 101/70 HR 123

difference in HR 70-123  53 bpm 

I welcome any feedback , I feel so lost and trying to get to the bottom of my symptoms. I also want documentation to show to specialist. What does everyone think ? 

 

 

 

 

 

 

[Pistol]

@HCD77 - I would definitely take these readings to the specialist. Also let him/her know what your symptoms were, especially presyncope after 15 minutes of standing. 

[HCD77]

Thank you @Pistol, I will show her the results. I’ve got to get some doctor to help me get some kind of diagnosis and appropriate treatment . 
 

The symptoms and at home testing continues .......
 

I have been suffering from insomnia now for a year , before I had no problems. I can fall asleep but the pattern is I wake up between 2-3 wide awake feeling fine, just can’t go back to sleep .

So this morning at 2 am I took my readings to show specialist. Im not on any meds right now , and no salt /fluids or electrolytes, compression hose since 9:00 pm. 
 

Lying down 5 min 99/67  HR 73

Sitting 2 min 107/80  HR 85

Standing 5 min 95/70 HR 110

Standing 10 min 88/65 HR 113

Standing 15 min ...

for the first time I got extreme nausea like I was going to throw up , palpitations, shaky, sweaty, swollen and tingling hands and feet , shortness of breath , confusion , whole body felt it was going to collapse or faint or seize. I got real scared immediately layed down and I immediately saw my heart rate start going down and I settled down. It took a while but went back to sleep woke up startled with 125 bpm it also went down pretty quickly . 
My question is I clearly have a high heart rate upon standing and also maybe some kind of orthostatic intolerance. I’m trying to get documentation to show to specialist but won’t try that long standing again. It was just awful. Has anyone experienced these symptoms of passing out doing a poor mans table test or were these your symptoms during a tilt table test. As you know my TTT was off 3 bpm but I don’t know what else I need to do to get the point across that I am suffering with these symptoms upon standing, the fatigue and light head ness is still continuing as of now it was just such an uncomfortable experience I thought I pushed myself to far and would have to call ER that’s how bad I felt. 
 

Any advice or personal experiences with TTT or poor mans TTT at home would be greatly appreciated. I’m 61 and my body can’t take too much more of this . I have been suffering probably on and off not knowing what I have had for 20 years. Thank you 

[Pistol]

3 hours ago, HCD77 said:

Has anyone experienced these symptoms of passing out doing a poor mans table test or were these your symptoms during a tilt table test.

I have NCS and HPOTS and I used to faint whenever I stood a few minutes, also sitting at times. I also passed out during my first TTT. Twice now you mentioned that you almost passed out after 15 minutes of standing - that sounds like your limit. I understand that you are trying to become symptomatic to find out what happens but I would avoid standing for that long. Every time you feel like that your body has already worked really hard trying to keep your blood circulating and failed, meaning you already have operated on low oxygen to the brain for a few minutes. Every time that happens to me I experience worse brain fog for days after - so it is best to try to avoid standing. 

I truly wish that they will reconsider your TTT results, and maybe if you go back to that cardiologist and show him the results and tell him about almost passing out he will rethink the TTT. As far as I know presyncope is a reason to follow-up with the cardiologist to make sure it is not related to an arrhythmia. That will probably steer them back to dysautonomia. 

[HCD77]

Thank you @Pistol, I appreciate your advice about the at home testing. Sometimes I think I’m so desperate to prove to myself and to drs I have something and it’s not just anxiety and all in my head. I go to extremes sometimes. I will remember my head is not getting oxygen and that is not taking care of myself. I just want to get to the bottom and get the help I need. It has been so tough falling through the cracks at times I feel just powerless and hopeless. I know overdoing it and pushing myself is not helping though . 
 

[Pistol]

10 hours ago, HCD77 said:

It has been so tough falling through the cracks at times I feel just powerless and hopeless. I know overdoing it and pushing myself is not helping though . 

@HCD77 - I first became sick in 2009 and started passing out at work an everywhere with HR's in the 170's and BP's of 110/160. A TTT showed NCS - that was that. Because the docs all shrugged their heads and told me I am making things worse by taking beta blockers ( b/c it was "all in my head" ) I continued to go to work ( 12 hours shifts as a nurse ) and I made everything much worse. Soon my fainting spells turned into autonomic seizures and i would pass out sitting down, 5 cardiologists shaking their heads. I even had autonomic testing at a renowned autonomic clinic and was told that there was nothing wrong with me, to take salt tablets. When I finally got in to see my autonomic specialist he immediately conformed a diagnosis of HPOTS and started the long and frustrating process of finding the right drugs.

As you see - your unfortunate story rings a bell for most of us here. Just do what you are doing: educate yourself, bring studies and articles with you to your appointments to show when they dismiss your concerns or symptoms, and WRITE EVERY symptom down, every time you feel like passing out, how long you can stand BEFORE SYMPTOMS begin ( appears to be a bit over 10 minutes for you ). That way they hardly can say you don't have dysautonomia simply because you needed 3 more beats for a "per-the-book" diagnosis. And presyncope cannot be dismissed. 

Don't be hopeless - most of us here were in your boat, and many still are. If a doctor dismisses you you are entitled to a second opinion - find another cardiologist and have him look at your TTT. 

Here is an article that proves the poinT; https://www.ahajournals.org/doi/full/10.1161/circulationaha.107.761643

Quotes: 

- The principal feature of POTS is orthostatic intolerance, defined as the provocation of symptoms on standing that are relieved by recumbence.^1,2 Patients usually complain of palpitations, fatigue, lightheadedness, exercise intolerance, nausea, diminished concentration, tremulousness, syncope, and near syncope.³ POTS is a subset of orthostatic intolerance that is associated with the presence of excessive tachycardia on standing

- It should also be remembered that other orthostatic intolerance syndromes exist in addition to POTS, in which symptoms occur in the absence of dramatic heart rate increases.^6,7

- POTS patients have been reported to suffer from a degree of functional impairment similar to that seen in conditions such as chronic obstructive pulmonary disease and congestive heart failure, yet these patients are all-too-frequently misdiagnosed as having severe anxiety or panic disorder.^4,5