penguin2

Does anyone else notice the valsalva  maneuver increases or causes symptoms? During my autonomic testing study the valsalva was the worst part for me symptom-wise.. now while I'm working with PT he noticed I was holding my breath a lot. Now he is wanting to focus on strengthening my abdominals because I'm creating a valsalva maneuver when I lack core stability, which is what's causing me to be so symptomatic. Wondering if everyone has a rough time with valsalva maneuver or if it's just us potsies? And if it's just us, can someone explain why it's soo hard? 

6 hours ago, DysautonmiaMatt said:

I think cardiology will be able to help you, at least give you med(s) to manage your symptoms and do more testing to rule out correctible conditions like echo, Holter/event monitor ,stress stress test etc. It would be a good idea if you know who you are going to see if he/she knows about POTS/dysautonomia a head of time. Propranolol has been a helpful med for keeping my heart rate controlled.  It is forgiving meaning if I take too much it does not last long and HR returns to normal in a few hours. When I have episodes of PVCs since being on Lexapro it does not stop them and was told by a cardio it is a weak beta blocker and Atenolol is better for them. but it is a much stronger med at least in me and the time I took it made me feel worse. 

I assume you were healthy before all this started happening. Regardless if you have POTS, sounds like you do, what changed in your body/life that could be the cause? For me a diagnosis is a label. If I can't find the root cause(s) then I have to learn to manage the symptoms the best I can. 

One thing that has helped me a lot especially at the beginning is upper cervical chiropractic. My atlas was way out of alignment. Right after the 1st adjustment I felt better. With this approach I had to go 2 times per week until the adjustment started to hold better. This new chiro I am seeing is using an EPIC table which uses sound waves along with some fancy computer program to make a correction based on several X-Rays. I did not even feel the correction. I have not needed an adjustment in 3 months which is a record for me.

The cardiologist I am seeing is the same one who diagnosed someone else I know with pots - so I know he is familiar with it.

I was very healthy before all this and still consider myself to be generally healthy. The biggest things that changed for me is I stopped regularly exercising for a different reason, and then I came off hormonal birth control which I had been on for over a decade. So I tried getting back into my normal exercise and I still retained my strength but I kept getting dizzy/lightheaded/chest pains that weren't normal for me so it scared me. I do know I have a lot of symptoms of hEDS as well, but I don't have a diagnosis for that either so I don't know for sure if that's it as far as root cause. 

8 hours ago, MikeO said:

Well i used the term (orthostatic or neurogenic) as a general term. Being orthostatic comes in many forms or subtypes if you will. Orthostatic Hypotension, Neurogenic Orthostatic Hypotension, Postural Orthostatic Hypotension, Postprandial Orthostatic Hypotension, and yes Orthostatic Intolerance etc...

No i don't think you saw the wrong specialty but i think @GasconAlex said it best "My point is that it depends on the doctor." I too had two TTT tests by the local healthcare Cardiologists and never got a definitive diagnosis as to me backing out of a neurology appointment after doing my research i quickly realized the neuro group was not going to be any more help than the people that did my TTT test.

Hope that helps.    

 

Yes that helps a lot, thank you for clearing that up for me! How were you able to get a diagnosis, if at all? Did you end up getting a second opinion at a different healthcare org? I think if cardiology is a dead end I'll get a second opinion at a different organization. 

6 hours ago, MikeO said:

Just keep in mind that POTS bp/hr are very distinctive from being orthostatic or neurogenic. Last summer i was scheduled to see a neurologist i backed out. There is a thread on Dinet with a video that demonstrates IMO a true POTS episode i just can't find it.

Hang in there!!  

What exactly do you mean by "orthostatic or neurogenic" - are you referring to orthostatic intolerance vs pots? Why did you back out of the neurology appointment? Just trying to understand - do you mean to say that my problem is because I'm being seen by the wrong specialty?

3 hours ago, Pistol said:

@penguin2 - TTTs can be negative at times, they are not the gold standard. Physicians familiar with POTS know that, also many TTTs are not properly interpreted, depending on the expertise of the physician. Orthostatic testing that shows the increase in HR as well as documented symptoms ( not even necessary during the test!!! ) should be enough for a definitive diagnosis: I know of many patients that were diagnosed this way despite the TTT being unclear. I was diagnosed with HPOTS by my specialist although 3 cardiologists misinterpreted 2 TTTs, one as NCS and one as normal ( despite the fact that it clearly showed the increase in HR and symptoms ). 

 

This is clearly not proper practice. The HR increase - if sustained - clearly shows POTS. The physician needs to look at the whole test, this includes reported symptoms in addition to the "numbers". Plus - your numbers are showing POTS. 

My question is - why does a neurologist do a TTT when it should be a cardiologist reading it? Maybe that is why the physician interpreting it does not know how to read it? I hope the cardiologist will redo the TTT - physicians do not question the interpretation of other physicians, they go by the readings of the test that was done. PLEASE ask the cardiologist for another TTT as a second opinion

Also - increasing fluids is a common first step in treating POTS, but it has to be done in addition to increasing salt intake, or you will just pee endlessly. Compression hose is also recommended. PT can be helpful IF orthostatic and/or exercise intolerance are reported. 

 

Nobody would give me a referral to cardiology because my first reported symptoms were nerve pain and palpitations - that's what started all this. Then the dizziness and lightheadedness started shortly after the nerve pain and palpitations. Nerve pain is better now after a stint of gabapentin and chiropractic so that was likely a separate issue. I finally asked for a referral to cardiology after my TTT was normal. 

I just had a follow up appointment at neurology and I am feeling very confused and frustrated. Every time they do an orthostatic test it clearly shows my hr increases by more than 30 bpm, I have all the symptoms of pots, and orthostatic hypotension can be ruled out.. but because I was negative during the TTT, they refuse to give me a diagnosis.

I asked the nurse I saw at neuro about pots and she said my autonomic testing did not support pots but could not give me an explanation why when I asked - I even pointed out that per the tech's report that I read that my hr went from 66bpm to 100bpm at 1 min mark. She said she didn't know why because she doesn't read the reports, it was a different doctor who reads them.. when I asked that doctor previously, his response was that he reads it off of the computer program and doesn't look at the techs report or my symptoms. So I asked the nurse I saw yesterday if it could have been a false negative and she again said she didn't know and wants to see what cardiology has to say. Yesterday she redid the orthostatic test and my hr resting was 87, standing at 1min was 127, and at 3 mins was 118. She ruled out orthostatic hypotension (she even said this). She said "I can't give you a diagnosis but with our pots patients we start them with PT so I'm going to give you a referral there, and we want you to drink 80 oz of water a day"

My cardiology appt is coming up in a couple weeks. I am just wondering why she would want to start treatment for pots without a diagnosis? She couldn't answer any of my questions about why the TTT were the way they were. I'm just so confused because if she doesn't think I have pots then it wouldn't make sense to start treatment for it would it? Or she does think I have it but then why wouldn't she diagnose it? Am I right to be upset in this situation, or should I just be happy she is getting me treatment?

I'm in the US, and I am 99% certain I have POTS based on all my symptoms, and the sustained HR increase of 30+bpm upon standing.. I have been tested at neurology until I was blue in the face and all the "scary" stuff had been ruled out. (I say scary because that is how my doctors have worded it, even though these symptoms have been VERY SCARY for me!) I had to push to be seen by a cardiologist familiar with the condition, and that appointment is now coming up in a few weeks. My plan was basically to tell him all my symptoms, that I think POTS would cause these things, but that I'm not sure and ask what his thoughts are.

Here's my issue: Now that I've gotten the appointment and I feel confident I'll get a diagnosis with this approach, I don't know if I want it. I don't plan to medicate, as I generally react poorly to pharmaceutical medications.. I am a business owner, which means if I ever need insurance such as disability insurance, long term care insurance, or even life insurance, a diagnosis may make it difficult, cost prohibitive, or impossible to qualify for. I'm also concerned about being "labelled" by the medical industry and then having even more issues dealing with my doctors after diagnosis. Since I plan to treat this naturally on my own, I'm asking myself: "is it even worth it to continue seeking a diagnosis?"

I'm curious if anyone has had any more problems since diagnosis compared to before diagnosis and if anyone regretted getting diagnosed? I'm also curious if anyone thinks it was very well worth it to get the diagnosis and if it's made things better or easier in another way I'm not thinking of? I'm just torn on if I should keep my next appointment or not, and would appreciate real-life examples of if it is worth it or not.

**Not asking for advice on what I should do in my situation, just curious of other people's experiences so I can make a well-informed decision for myself.**

I was thinking about going that route as well. Just sent a request to the neurologist's office to ask to send me to cardiology. If I get nowhere with cardiology I am going to pursue functional med.

9 hours ago, Pistol said:

I had 2 TTTs done by two different cardiologists. One was positive for NCS ( I passed out ) and the second was determined to be normal. The EP that did the second TTT was extremely rude and ignorant about POTS. He claimed the increase in HR during the test was due to "hysteria" --- could you imagine? Well, needless to say I then saw an autonomic specialist ( after 1 year waiting ) who diagnosed me with hyperadrenergic POTS ( conformed by blood test ) and said the second TTT was clearly and blatantly positive for POTS. 

@penguin2 I definitely would see another doc right away. A three hour drive to see a specialist is not too bad, that is how long I drive to see my cardiologist, and my autonomic specialist is an 8 hour drive away. 

Hysteria ... Wow! That is awful. Sounds archaic. Thanks for the advice, yeah I suppose it's not too terrible of a drive, it's just hard to justify spending the money when I can probably start treatment on my own with salt, compression, and chop protocol. I am having a hard time deciding if it's worth it. I've also considered functional med since allopathic med seems to be a dead end for me. 

Thank you for your reply. The provider I saw is not an expert in autonomic dysfunction.. when I looked at the dysautonomia international website, the closest provider to me is about 3 hours away.. Though I do know of other people in my area who were diagnosed with POTs by a cardiologist at the same organization I am going to. I wonder if it's worth it to consider asking them or my PCP for a referral to cardiology, or if I should just cut my losses and travel the 3 hours?

For the past several months, I've been dealing with POTs symptoms.. lightheadedness, pre-syncope when standing, exertion, or in heat, frequent headaches, tremors, abdominal pain, chronic pain, chest pain, heart palpitations, fatigue, shortness of breath, brain fog, exercise intolerance, reddish/purple color (blood pooling) in legs and feet when standing, and the biggest thing: my heart rate increases by 30+ bpm when I stand up from resting supine, and it sustains for at least 1 minute.

I was initially referred to neurology by my PCP for new and sudden neuralgia pain and palpitations. The nerve pain has since gotten better after a short stint of gabapentin and chiropractic care. They also had me wear a heart monitor for 6 days due to the palpitations - the Ziopatch results showed some tachycardia (my hr went up to 175 even though I had not been exercising), and some PVC's, but was noted as "fairly benign". At my follow up with neurology, when they wanted to prescribe me long term Lyrica, I declined the drug and decided to push for a tilt table test regarding my other symptoms. They performed a poor mans TTT (they called it orthostatic test), and confirmed my resting heart rate was 73 bpm and at 1 minute standing my hr was 109 bpm. This led them to order autonomic testing where they did the QSART, breathing exercises, Valsalva Maneuver, and the TTT. A technician performed the test, who is familiar with POTs, but I have never seen the doctor who read the report from the test. The technician wrote on the report my lowest heart rate was 63 at rest, my 1 minute standing heart rate was 100 bpm. I waited over 1 month for the results of the test, which indicated the test was "normal." They do not want to do any further testing or care for my symptoms. When I read the report from the physician, he wrote my heart rate range was 63-83 bpm, not 63-100 bpm. When I asked for the reason for the discrepancy, he responded:

"The measurements reported by the technician and by myself are measured in different ways. The technician measures HR as a general guide during the test. The range I use for interpretation is as measured automatically by the equipment during specific parts of the test and those are the readings used for formal diagnosis."

This tells me the doctor is allowing a computer system to make his diagnoses, and not his skills and education as a doctor. I am wondering if anyone else has had something similar happen, and how you may respond to this? I am also curious if and how they used the information from my other tests (the ziopatch and the poor mans ttt) to make this call.. it appears they haven't even considered the other results, nor my symptoms. I just want to get proper diagnosis and treatment for my symptoms as it is affecting my life, work, etc.