Autonomic Tests Normal, What Could This Be

[lewis]

Just got done with 2 years of testing with finishing up with autonomic testing. I've had every test I've ever heard of. Everything has come back normal. I failed a ttt my cardiologist did a year ago but passed the autonomic one they did again just fine. I have alot of pots type symptoms that come and go. I am not sure what could be causing my problems. I have been very slowly making progress and feeling better and nerve pain almost gone until last week. I've had problems before with palpitations when doing push ups. I decided to do some work out dips. I felt fine when done and started eating an avacado. It didn't go down all the way but didn't feel stuck. My heart suddenly went into what felt like a fib. I tried coughing a bunch of times and bearing down but nothing. Adrenaline began to surge and I was feeling really bad. I decided to take a drink and it pushed the avacado and I slowly felt better. I felt horrible after for a week and feel like all the progress I made has been wiped and I'm starting over. I have a hiatal hernia that has felt jacked up since. I feel like the vagus nerve and my hernia have something to do with what's going on with me. I have esophageal spasms all the time. Anyone heard of something like this causing dysautonomia? Or could this be a reaction to the adrenaline surge? Any opinions or insight would be appreciated.

[Katybug]

Hi Lewis,

Sorry there haven't been able to find any answers. It's interesting you bring up the hernia. My mother had a severe hiatal hernia. 2/3 of her stomach had come through the diaphragm and was pressing on her aorta. It made her develop asthma and, around the same time, she developed dysautonomia like symptoms. After surgery to correct the hernia, the asthma improved although was not cured. The other symptoms such as dizziness, fatigue, and weakness has not. She was found to have a rt bundle branch block and had to have emergency surgery to implant a pace maker. We were all convinced that would fix the symptoms, but no. She continues to struggle and while her health wasn't perfect prior to the hernia, it wasn't like this. It makes me wonder if her vagal nerve was damaged due to the severity of the hernia and the length of time it took to diagnose it.

I do hope you are able to figure it out. The not knowing is so frustrating.

[lewis]

Interesting info. I have another friend that has a hiatal hernia and also has autonomic disregulation. Also when my esophagus isn't raw my autonomic problems are better or is it when my autonomic problems are better so is my esophagus. It's hard to know which is the chicken and which is the egg but I can have no nerve pain and as soon as I eat and the esophagus gets irritated the nerve pain shows up. It's doesn't matter though if the food is acidic or anything, any food or drink brings it on. Cold water makes me feel like I'm on a boat I guess from the esophagus spasms. I might find an ssri to calm the esophagus, I've heard about it used for that anyways.

[gjensen]

What testing did you have, and what were the actual results? Where did you have the tests done? Maybe I missed that somewhere?

[tgleiker]

Interesting- I also have a hiatial hernia and know someone else that does too...

[lewis]

What testing did you have, and what were the actual results? Where did you have the tests done? Maybe I missed that somewhere?

It's a long list but as far as autonomic testing, Qsart, ttt, nerve conduction, skin biopsy, breathing tests...

I don't know what test I've had that exists. Testing was done at the university of utah. I have the actual results but all were within "Normal" ranges. My pulse did raise on the ttt but bp stayed the same and after a few minutes my pulse dropped down. Was having a good day that day.

[SarahA33]

Hi Lewis,

Have you had a GI doctor complete an endoscopy or a barium swallow?

[masumeh]

My autonomic test came up normal, even though my TTT clearly established my POTS diagnosis (on a good day, but we're all different and some people have borderline cases that are more difficult to diagnose). My TTT showed 75% blood flow deficit to my head when tilted up (10% is normal). My stress test felt good to me, but the technician ended it early because my blood pressure was rising dangerously high and she believed I was going to faint from my appearance. (I faint a lot.) I blackout when I stand up too quickly, and often faint several steps away from wherever I was sitting...neighbors know they can't expect an answer if they knock on my door when I happen to be sitting down or laying down...my family all jump out of their seats to catch me if I forget and get up too quickly. The blood pooling in my extremities is visible.

But my autonomic tests came back perfectly fine! It's really annoying because I had read and always assumed POTS meant dysautonomia. In my case, however, it might be because of Ehlers Danlos Syndrome, a genetic collagen error that makes my connective tissue too loose, including vascular walls.

My autonomic tests came up normal, as did my nerve conduction study, brain MRI, EEG and EMG...all neurological indications show normalcy, but I have lost some feeling in my hands/arms and feet, hearing, some degree of fine motor control in my hands, and overall balance...AND, I'm quite sure now that I've been having seizures for years, not just fainting episodes. So, this was unexpected for me, that it all looks normal in their tests and scans. The doctors told me to come back in a year or so in order to see if there is any change because they have to see two standard deviations from the norm in order to conclude that the test shows pathology, and maybe I just am not that bad yet. Not comforting.

They did find vitamin D and B12 deficiency...and I am actually regaining fine motor control and feeling in my hands since supplementing these vitamins.

We are puzzles. They can't figure it out. Just try to get at least a piece or two that can help you recover...it takes a long, long time to sort through it all. I've found that it's helpful to narrow complaints to a single question for a single doctor, get the answer, and move on. For example, I thought I might be having chiari malformation...went to a neurosurgeon experienced in POTS, EDS and chiari problems...from the MRI, she was able to rule this out, but told me that my discs are degenerating, hardening and drying out and growing bone spurs (osteophytes) into the spinal canal that are beginning to touch my spinal cord (and are inoperable). So, good to know. I had to have the two pieces of information that took me years previous to this visit to obtain for her to be able to properly assess me: POTS and EDS...so, it's just one step at a time.

I dunno if this response is helpful. Obviously, I can't tell you what you have. Hope you find your answers.

[lewis]

Hi Lewis,

Have you had a GI doctor complete an endoscopy or a barium swallow?

Ya I've had 7 endoscopies, no barium swallow test. I have had lots of gastritis and eating pain which was fixed last year when they discovered my celiac artery stenosis die to median arcuate ligament syndrome, had surgery to cut the ligament and have no more gastritis.

[lewis]

My autonomic test came up normal, even though my TTT clearly established my POTS diagnosis (on a good day, but we're all different and some people have borderline cases that are more difficult to diagnose). My TTT showed 75% blood flow deficit to my head when tilted up (10% is normal). My stress test felt good to me, but the technician ended it early because my blood pressure was rising dangerously high and she believed I was going to faint from my appearance. (I faint a lot.) I blackout when I stand up too quickly, and often faint several steps away from wherever I was sitting...neighbors know they can't expect an answer if they knock on my door when I happen to be sitting down or laying down...my family all jump out of their seats to catch me if I forget and get up too quickly. The blood pooling in my extremities is visible.

But my autonomic tests came back perfectly fine! It's really annoying because I had read and always assumed POTS meant dysautonomia. In my case, however, it might be because of Ehlers Danlos Syndrome, a genetic collagen error that makes my connective tissue too loose, including vascular walls.

My autonomic tests came up normal, as did my nerve conduction study, brain MRI, EEG and EMG...all neurological indications show normalcy, but I have lost some feeling in my hands/arms and feet, hearing, some degree of fine motor control in my hands, and overall balance...AND, I'm quite sure now that I've been having seizures for years, not just fainting episodes. So, this was unexpected for me, that it all looks normal in their tests and scans. The doctors told me to come back in a year or so in order to see if there is any change because they have to see two standard deviations from the norm in order to conclude that the test shows pathology, and maybe I just am not that bad yet. Not comforting.

They did find vitamin D and B12 deficiency...and I am actually regaining fine motor control and feeling in my hands since supplementing these vitamins.

We are puzzles. They can't figure it out. Just try to get at least a piece or two that can help you recover...it takes a long, long time to sort through it all. I've found that it's helpful to narrow complaints to a single question for a single doctor, get the answer, and move on. For example, I thought I might be having chiari malformation...went to a neurosurgeon experienced in POTS, EDS and chiari problems...from the MRI, she was able to rule this out, but told me that my discs are degenerating, hardening and drying out and growing bone spurs (osteophytes) into the spinal canal that are beginning to touch my spinal cord (and are inoperable). So, good to know. I had to have the two pieces of information that took me years previous to this visit to obtain for her to be able to properly assess me: POTS and EDS...so, it's just one step at a time.

I dunno if this response is helpful. Obviously, I can't tell you what you have. Hope you find your answers.

I read stories life yours and think that I shouldn't even be complaining. I just really want to get back to being the tough person I was before and be able to continue training for marathons but don't think that will ever happen.

[masumeh]

If marathons and toughness is your norm, you might feel like crap just being in normal health . Seriously though, people with high athleticism in their history before POTS onset can sometimes get POTS or POTS-like conditions from very short periods of bed rest resulting from simple illnesses, as short as two weeks. I've heard this from several of my healthcare providers. The key is to recondition but very slowly. It's frustrating because it doesn't feel possible to exercise at first.

Your GI problems sound like a place you might start, in terms of what you can do to feel better. You have a constricted esophagus, right? You can get that fixed. It's terrifying when things get stuck, and it's genuinely dangerous. My sister-in-law has this. Nexium helped her a lot, but she ultimately had to do the surgery to get it really fixed...after so many trips to the ER with stuck food. If it's just spasming, there's a medication for that. I took it years ago for some esophageal spasms I was having, and it worked instantly after months of cardiac pain from the spasms rubbing up there, and an incident asphyxiating water (I had avoided going to the Dr because they never seem to understand anything...but surprisingly, with no POTS experience, this GI doc knew just what to do)...if I find the name of the medication, I'll post it for you. Oh, and a barium swallow test won't show it. I think if you have this going on, you have to be REALLY careful when you swallow. You can't just casually gulp some water while standing...you have to sit down, be relaxed, not breathing heaving from exercise or something. But they should be able to help you with this...not POTS specialists per se but just a good gastroenterologist.

[lewis]

If marathons and toughness is your norm, you might feel like crap just being in normal health . Seriously though, people with high athleticism in their history before POTS onset can sometimes get POTS or POTS-like conditions from very short periods of bed rest resulting from simple illnesses, as short as two weeks. I've heard this from several of my healthcare providers. The key is to recondition but very slowly. It's frustrating because it doesn't feel possible to exercise at first.

Your GI problems sound like a place you might start, in terms of what you can do to feel better. You have a constricted esophagus, right? You can get that fixed. It's terrifying when things get stuck, and it's genuinely dangerous. My sister-in-law has this. Nexium helped her a lot, but she ultimately had to do the surgery to get it really fixed...after so many trips to the ER with stuck food. If it's just spasming, there's a medication for that. I took it years ago for some esophageal spasms I was having, and it worked instantly after months of cardiac pain from the spasms rubbing up there, and an incident asphyxiating water (I had avoided going to the Dr because they never seem to understand anything...but surprisingly, with no POTS experience, this GI doc knew just what to do)...if I find the name of the medication, I'll post it for you. Oh, and a barium swallow test won't show it. I think if you have this going on, you have to be REALLY careful when you swallow. You can't just casually gulp some water while standing...you have to sit down, be relaxed, not breathing heaving from exercise or something. But they should be able to help you with this...not POTS specialists per se but just a good gastroenterologist.

This spasming sounds just like what I am experiencing. I don't have problems with constriction, just might have had a spasm right when I tried to swallow and out got stuck? I can lay on my stomach at night and it sounds like my bed has springs being flicked but it's my spasms. It doesn't happen every spasm but my spasm alot of times will cause my heart to skip beats. If I could get this under control I could run again but running exacerbates the spasms. Any more info would be helpful. I have a good gastro doctor so I'd like to have more info to bring with me next time I see him. Was the med dialtazem? Thanks.

[rubytuesday]

I just had to add my 2 cents as far as 'autonomic tests normal'.

I have POTS/dysautonomia/neurocardiogenic syncope/orthostatic hypotension, BUT, sometimes my blood pressure can run high and/or normal, and more times than not, my heart rate is normal. It is infrequently that I will burst out in an outpour of sweat to such degree that even my hair is dripping and it looks like I'd just got out of a shower. That is the nature of dysautonomia. Your autonomic nervous system can function perfectly fine but then go wacky. My cardiologist suspicioned POTS that was resistant to traditional modes of treatment. He sent me to a neurologist for second opinion. She said I was neurologically fine (but hinted that it could be something with the ANS, and in fact asked me to call her to let her know what the specialist in dysautonomia determined). My cardiologist referred me to this cardiac specialist in dysautonomia to help establish a more precise diagnosis and treatment plan. The specialist explained to me that my ANS is in failure and it is the nature of the beast to misbehave out of the blue and sometimes at the most inconvenient/embarrassing times. Then when I may be feeling fine/normal, I move to get activities done and may be fine doing so, but it is unpredictable. I could be fine and in the midst of doing a simple chore then boom, it hits. Thus, I've taken to heart the cautions and 'don'ts' my specialist gave me.

Perhaps you need another opinion, another set of eyes. I kept a record that would graph my 30-60-90 day BP and heart rate highs and lows (MedHelp.org or .com has a tracker) that I would take to my next appointments at each visit, highlighting the lowest. I would keep record of each episode I had (date/time/what I was doing at the time) and take that along with the graph. In addition the graph demonstrated your highest/lowest and average over the range that you print. It would give the doctor something more objective to look at rather than just at the time of my visit.

Best wishes.

ruby

[Katybug]

Lewis - in talking to my mom this evening, we were talking about this topic. She mentioned to the new pulmonologist that I have EDS and she didn't discount that being a factor in my mom's issues. But, it made me think, hiatal hernia is quite common in EDS patients as are dysautonomia symptoms. Have you been thoroughly evaluated for EDS?

[lewis]

Lewis - in talking to my mom this evening, we were talking about this topic. She mentioned to the new pulmonologist that I have EDS and she didn't discount that being a factor in my mom's issues. But, it made me think, hiatal hernia is quite common in EDS patients as are dysautonomia symptoms. Have you been thoroughly evaluated for EDS?

I havent since I don't have some of the symptoms. My skin and joints are more on the too tight side of things rather than too loose. I will ask my doctor about it though. Thanks.

[Dr. Rob]

Hi Lewis!

Dysautonomia symptoms are quite common in triathletes and marathoners who become overtrained, in my experience. Overtraining syndrome presents very much like POTS, in my experience. In my opinion it is quite common for "endurance athletes" to create enough diaphragmatic irritation to affect the vagus nerve (the principle parasympathetic nerve of the thoracoabdominal viscera). The patient then suffers from multiple viscerosomatic reflexs making the patient absolutely miserable, such as esophageal spasms and difficulty swallowing food.

A Doctor of Osteopathy (DO) knows how to do a diaphragmatic release and also how to treat mid-thoracic dysfunction.

Just got done with 2 years of testing with finishing up with autonomic testing. I've had every test I've ever heard of. Everything has come back normal. I failed a ttt my cardiologist did a year ago but passed the autonomic one they did again just fine. I have alot of pots type symptoms that come and go. I am not sure what could be causing my problems. I have been very slowly making progress and feeling better and nerve pain almost gone until last week. I've had problems before with palpitations when doing push ups. I decided to do some work out dips. I felt fine when done and started eating an avacado. It didn't go down all the way but didn't feel stuck. My heart suddenly went into what felt like a fib. I tried coughing a bunch of times and bearing down but nothing. Adrenaline began to surge and I was feeling really bad. I decided to take a drink and it pushed the avacado and I slowly felt better. I felt horrible after for a week and feel like all the progress I made has been wiped and I'm starting over. I have a hiatal hernia that has felt jacked up since. I feel like the vagus nerve and my hernia have something to do with what's going on with me. I have esophageal spasms all the time. Anyone heard of something like this causing dysautonomia? Or could this be a reaction to the adrenaline surge? Any opinions or insight would be appreciated.