Hello Osric,

Some of your symptoms sound very similar to mine. I recently went to Vanderbilt's dysautonomia clinic and was told that I do not have dysautonomia although I have tested positive on a paraneoplastic panel and fell in the range for dysautonomia. But, when I was at Vanderbilt, I was having an almost complete remission of symptoms and had been exercising heavliy for about 5 months. I had a positive hit on a tilt table test at one hospital months before, but not at Vanderbilt. I also did not have an issue with the other tests that were given, so the sweat test was eliminated from my visit. The doctor did say I my have mild orthostatic hypotension.
I have yet to pass out...

My resting BP seems to be fine, but I do get lightheaded when standing, but not all the time. Some blurred vision. I also have a panicked like feeling when falling asleep and sometimes gasp for air. I had a positive hit on a tilt table test at one hospital, but not at Vanderbilt. I also did not have an issue with the other tests that were given, so the sweat test was eliminated from my visit.
I also suffer from task based confusion, but not all the time.
I have pain basically all over my body from working out for 23 years and so every thing seems to hurt now. I also took Humira for about 10 years for psoriasis, this could have contributed to my neuropathy issues.
My pain is certainly affected by stress and unhappiness, two things I deal with almost everyday.

Let's keep in touch and continue to compare notes.

Nervous1

To simply answer your first question: YES, it is not only common, but expected, to have autonomic symptoms that come & go. Most of us with dysautonomia have waves of symptoms that last days/weeks or months. It's best to be tested during this time.

As for the OH and errors on readings while moving. It should still be accurate if you stop moving as soon as the cuff finishes inflating. If your problem is just when moving, then request a treadmill stress test. They take BP's and heart rates while you are walking...yet your arm is stationary/still on the bar in front of you so no errors will occur. You can also try BP's at home doing things you know makes it drop and just hold your arm still or be still once it inflates. Make a journal of activity that causes symptoms and record readings that correlate to it. Then repeat these in the doctors office.

I don't think AAG antibodies vary...they are either there or they are not...as in most other autoimmune diseases (whether in a flare or not). So I don't think your would have to be in an active state for them to show up. BTW, did you have a workup for autoimmune conditions?

I understand your frustration with one-size fits all for testing...particularly with a condition that symptoms wax & wane. But it appears they responded (not discounted) to your reported symptoms of IST and treated with what is usually a first line treatment...beta blocker. It's unfortunate that your had a negative reaction. Are you still having problems with the tachy rates? Is 110 the highest? Have they tried other medications?

Sorry I can't be of more help. Your BP is unusual and the fact that it returns to normal when standing still (vs drops) is sort of outside the box for OH. However labile BP can be problematic also. You will just have to practice various techniques to record BP's in different situations/activities. Most home BP monitors save the history for some time period. When you've collected numerous readings that show your problem, then take the machine with you and scan through the history to show the doctor the actual readings. Maybe this alone will help avoid further (hit or miss) testing. A good autonomic specialist KNOWS that symptoms come & go and should take this into account when testing and setting up testing during those time periods.

Thanks again for your help en bloc. The reason why the inflater cuff registers errors is because my blood pressure is changing during the measuring process. I suspect the errors are the result of the diastolic registering as being higher than systolic because the systolic is measured in a trough and diastolic at a peak. This has resulted in implausible readings like 160/60 and 110/100 where in the gap between measuring the diastolic and systolic my blood pressure is changing. It is extremely labile during the period of testing. My blood pressure drops last a second or two before bouncing back with an brief hypertensive overcorrection. I can sustain the blood pressure drops for an extended period if I initiate a trigger such as standing up and maintain the trigger with a sustained unstable posture. Of course the doctors assumed the errors were as a result of my arm moving or flexing and fouling the test. This is not the case, I am acutely aware of this issue and make sure I don't flex or wave my arms around during measuring and keep it steady during inflation.

I do however, during attacks, experience a more orthodox OH where my baseline blood-pressure drops, and I experience dizzy spells, accompanied by comparatively mild POTS. I'm pretty certain my OH, whilst as you say is a little outside the box, is simply a result of my being fortunate that I require a little more orthostatic stress than usual to trigger a drop. So for instance I just measured my BP and it was 140/80 seated 145/90 after standing( probably a bounce back overcorrection) and 105/70 after walking up the stairs. I had a 15bpm increase on standing despite such a highly transient bp drop. Similarly I can stand at the washing up sink fine, but when I start moving my arms around to perform the task my blood pressure starts bouncing around. I should of course be grateful for the improved functionality of this but it certainly has made diagnosing it a misery.

The beta blocking incident occurred before the IST diagnosis as a result of the assumption that my tachycardia was a psychiatric issue having discounted the blood pressure issues. I was beta blocked to 60 bpm with the sort of beta blockers used for psychiatric problems. Following the IST detection I was beta blocked using a very small dose of bisoprolol and only down to 90bpm, which I was able to tolerate and provided some relief, although it works against me when I'm bradycardic. I have never had panic attack like symptoms. Just a highly stable 110bpm the highest resting heart rate was around 130bpm with rare very unpleasant chaotic attacks with wildly fluctuating BP and heart rate. This is an extremely hair raising experience and at times I have had to lie on the floor and elevate the legs to maintain consciousness and I just take 300mg of aspirin and hope for the best. I'm not sure I share your opinion of my medical care to date. There is no excuse for detecting a resting heart rate of 110 and it taking 5 years to get a referral to a cardiologist. A patient shouldn't have to purchase his own cardiac monitoring equipment, study autonomic neurology, and correctly diagnose himself to convince a doctor that a resting heart rate of 110 warrants a referral to a cardiologist. Since the IST was detected I have a better relationship with the medical profession but I am still wary of undergoing testing that could throw up misleading results. Once bitten twice shy, and I think you can see how my blood pressure issues can circumvent standard testing.

I don't think my gasping is quite the same as yours Nervous1, although I know exactly what you mean. I am aware of the nature of the inspiratory gasps because they occur whilst I am still awake. They are not me waking up with a start. I am breathing normally and I will suddenly take a sharp involuntary intake of breath. This is a very common symptom with MSA as a result of the brain failing to detect breathing - the reverse of central sleep apnea. I have also had episodes whilst asleep where I wake and take an absolutely vast lungful of air similar to if you exhale far beyond your normal cut-off which I suspect is a failure to shut off the exhale reflex. These are concerning symptoms as as far as I am aware they are closely associated with CNS autonomic dysfunction. I would be very pleased to here from anyone experiencing this particular symptom with a non CNS diagnosis. Perhaps I should take this particular issue elsewhere.

Thankyou so much Nervous1 for sharing you personal experiences. It really helps to hear others experience and cross-reference with my own. Its interesting to note autonomic disruption not associated with dysautomnia, there were autonomic components of PTSD cases I've come across.

I very much appreciate your input on the AAG testing en bloc. I think as a result I will go ahead with them. It is precisely the sort of input I was hoping for. It is a great comfort to have a place to go with my queries. I'm sorry if I come across as somewhat prickly at times, its been a very frightening, isolating and frustrating few years and just talking about it takes me to a very painful place.

I'm a bit more clear now on your BP. I'd still suggest the stress test as I think your heart function needs more investigation and the BP and heart rate can be closely monitored...and a doctor is always present during the entire test and therefore could see first hand what is happening and not be able to dispute the findings.

Trust me, I have no illusions about how frustrating and unpleasant medical care can be. It took me 12 years to be properly diagnosed with neurologic complications of Sjogren's. I had a collection of various autonomic dysfunctions, PN, weakness, joint pain, and numerous other symptoms and separate diagnosis, including strokes, open heart surgery...the list goes on. I was bounced around from doctor to doctor, including the Mayo Clinic. No one could figure out the one component that was causing everything...because my labs for autoimmune disease are sero-negative (now I know that 40% of patients fit in this category). It wasn't until I went to Johns Hopkins for a consult about my antiphospholipid syndrome (APS) and 3 strokes that a doctor sat with me for 3 hours reviewing my extensive history. He ended saying, I think you have Sjogren's and that it's attacked your nervous system. A lip biopsy confirmed his thought, and a special MRI/MRN confirmed the damage to my dorsal root ganglia. 12 years it took for that first test to put all the pieces together! I assumed you meant the beta blocking experience was after your IST diagnosis...which would have been an appropriate treatment. I'm on the same page now.

I'm curious about your OH. What happens after you stand for 2-3 minutes? After 5-10 minutes? How low does your BP go? If your BP goes back to normal after standing, then how long do these attacks last? Is the worst of the attack during the labile BP or low BP? Do you experience any chest pain/discomfort during these attacks? If so, describe it, please. I ask because I wonder if you're experienceing any cardiac vasospasms? This is yet another autonomic dysfunction that can occur and can greatly affect your BP (both high & low) and heart rate. Also, do you have any unusual skin discoloration (particularly when cold)...a lacy pattern of blood vessels. It's called livedo reticularis. If you google images, you'll see what it looks like. It also a sign of blood vessel spasms (in medium blood vessels of the skin)..and of course an autonomic dysfunction. They are not widely spoken of, but most definitely an autonomic dysfunction. The cardiac vasospasms are difficult to diagnose, but an echo stress test may be helpful if they see any heart wall dysfunction, absent of severe CAD.

BTW, I have experienced the gasping upon onset of sleep. I too am still actually awake and realize it happening. My pulmonologist says it falls in the category of central sleep apnea and directly related to the dysautonomia. He said, in central apnea, the brain forgets to breathe. Have you had a sleep study done? Mine thankfully is a rare occurrence, so would likely be impossible to document on any given night. When mine occurs, it is also in waves for a couple days or even several times on the same night...sometimes waking me up with the gasping.

Is there anything you can think of when this began that might help lead you to the cause...it sure would make diagnosis much easier if you knew what brought it on. Was the onset sudden or gradual? Did it occur right after the flu bug you mentioned? What about taking any antibiotics or around any unusual toxins? If this began suddenly and after the infection, I would certainly consider autoimmune. Have you had any AI testing? Did you see an infectious disease specialist about the flu bug?