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Diagnosing Dysautonomia!

Dr. Diana explains what is involved in the diagnosis of dysautonomia. What is a "subclinical" diagnosis? Why a heart rate variability test is not enough! A must see for all spoonies - EDS with dysautonomia, POTS, MS, chronic fatigue, chronic Lyme, fibromyalgia, RA and other autoimmune and neurodegenerative diseases. Articles at www.Prettyill.com

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Hi Dr. Diana
I registered for the website today. I have not been tested for dysautonomia yet but I already suspect it would be positive on all tests. Thank for the testing advice.
I was wondering if you have a video on muscle atrophy
neuromuscler neuromusclar

I am sorry I was having trouble typing but I know you understand. smile

Great video - you are so funny Dr. Diana!
I’m not sure if you explained it and I missed it or not, but what is the connection in DXing POTS and sweating?

Also, my POTS DX from both my Cardio and Neuro was without any of those extra special tests. Yes, they went by heart rate and my fainting, and the 7 bags of IV fluid it took to get a normal heart rate (though it gave me a tremendous headache!). My regular doctor, naturopath, knew I had many more autonomic disorder symptoms and he ended up doing a tilt table test where the blood is drawn laying down and then in the upright position to test the catacolomines, and my norepi more than doubled when upright. So, that put me in they hyper POTS category.

At this point is there any need to have those other tests (sweat tests, etc.) done? Once we realized I had hyper POTS it made so much sense why the regular POTS regimen didn’t work and made me worse (salt and water loading, Florineff, etc.). The only thing is that I don’t have the high blood pressure that most hyper POTS folks have, rather I have normal to low BP.

I have been on Diamox for 14 months now which has helped a lot, especially with headaches/neckaches/migraines and reduced my tachycardia and dizziness a lot, but not completely. The downside is all the bicarb I require to not be acidic and that my potassium seems to never stay in the normal zone, despite RX potassium in increasingly larger doses.

Your mention of beating your hyper POTS definitely has me intrigued! Does beating it mean you don’t have to take any meds for it anymore? No more Diamox?????
~jerri

Having Tilt Table Test today for Tachycardia despite meds.  As I’m understanding I must get to underlying cause. I discovered last year I have Chiari, and many symptoms of EDS but haven’t seen a specialist on that yet. Your videos have been so informative

Hi Diana,

Really enjoying your site.  I was struck down with chronic illness a year ago and being a molecular biologist by training have like you jumped into the medical literature to find answers. 

I started actually seeing a correlation of my symptoms with histamine.  I read about POTS 6 months before a doctor picked up a standing heart rate change from 80 to 120 bpm.  I had many symptoms but went taking my pulse it often had only gone up 25 bp so shelved it and move on looking in mast cell activation.  When this doctor said to me “well that’s not normal, but I have no clue why”. I was able to say well I might.  I then had a positive table tilt test being symptomatic at 144 bpm.  One doc has questioned this as a positive as I didn’t or have a drop in blood pressure (they are very familiar with NMS in Belgium).  Do you agree the tilt test is not enough?  I don’t think they would have the other tests you mentioned.

I have pushed to get tested for mast cell issues as being the underlying cause but they can only do a tryptase test.  Ketitofen is available here (it was first discovered in Belgium) so I asked to change from my cetirizine to ketitofen and it has helped heaps with the fatigue, general pain and weakness in arms. 

Since taking this I have had an interesting finding.  My pelvis hurts really bad, just like when I had my daughter 10 years ago.  I have now had x rays and it is split at my pubis bone.  Having the X-ray was so painful I couldn’t sleep that night, then the flushing started (it had been under control for 4 weeks onlu flushing just before my night dose of ketotifen) the next day (so I quickly got my tryptase tested) and then the next day my POTS was really bad again.  I also get knee and left shoulder joint pain.  I have not overly flexible so I don’t think I have EDS.  Do you think the mast cell issues could cause injuries in my joints?  Or maybe the injury in my pelvis (I repopped it 18month ago) could be the start of the cycle?

I am feeling very alone (the medical profession here does not recognize POTS, mast cell activation or says its too rare to really happen).  I have been told I could go to Groningen in the Netherlands to see Dr Van Dormael.  But I don’t know if this is an expert or not.

One more thing I also have a consistently high alkaline phosphotase and now low phosphor.  I have read that this is indicative of bone cancer and since I have so many bone related issues is this worth looking into?  Can these be caused by mast cell activation or due to the pelvic injury?

Any advice you could give would be great.

Thank you for keeping fighting for more research.  I wish I could join you!
Karen

I again.  I forgot to say I have GERD, sinusitis, endometriosis, flushing, itching, and POTS.  I also experience a body shutdown when I have been upright with POTS.  This usually happens every 3 days.  I can’t do anything.  My body gets really cold.  I can sit by the fire that is 40 degree centigrade and my feet still radiate cold!  My body twitches and buzzes.  First this was very scary but now I see it as my body resetting itself.  Once this stops I’m can be upright again.  Is this common for dysautonomia?

And the sentence about the tilt test was suppose to say I didn’t faint.

Thanks again

Dr. Diana, I am going to a cardiologist to be checked for pots, will he know about disautonomia? what kind of dr. do I see for that if he doesn’t? An electrophysiologist?

Dr Diana,
I have had the tilt table test and it was normal..  yet I know I have dysautonomia..  or at least the symptoms.  I’ve been Dx EDS classical 20 years ago..  all three of my adult daughters have it as well..  My question is there a different set of “markers” on labs, tests, etc for EDS patients vs non-EDs patients??  Thanks for any info you can provide and keep up the good work..

I can’t find your video of how you beat Hyperadernergic POTS. I have been diagnosed with this along with Ehlers-Danlos Syndrome Hypermobility Typr and Mast Cell Activation Syndrome. Both of my daughters also have Ehlers-Danlos and POTS or Cardioinhibitory Vasodepressor
Syncope. We all three have several vitamin deficienies. We have had a hard time finding a dcotor who knows how to treat the conditions we have. It seems as if they want to treat each symptom and don’t ever even touch the root of the problem. We live in the Nashville area and we were diagnosed at Vanderbilt. My oldest daughter was also seen at Mayo and they confirmed the diagnosis of Ehlers-Danlos and renamed her previous POTS diagnosis with Cardioinhibitory Vasodepressor Syncope.  Where do we find a doctor? None of them seem to address the vitamin deficienies. Help!

Not diagnosed with anything but osteop., but had to get up slow whole life , some foods make it worse, trying to track down when feel better posible reasons!!!  Is pots related to slow resting , laying down heart rate? If sleep on back, HR - 43-53, rt side is 57-9, wonder why makes such a difference.
Would be so nice to wake up refreshed.

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