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FULL Autonomic Profile results back; ANY THOUGHTS FROM ANYONE?

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by keenly, May 17, 2011.

  1. keenly

    keenly Senior Member

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    hi i have my full results back below; if has any knowledge of this area PLEASE comment


    edit;

    it is not pasting
    How do i upload a file?
     
  2. Emootje

    Emootje Senior Member

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    -Attachments (paper clip)
    -Add Files
    -Select Files (bmp doc gif jpe jpeg jpg pdf png psd txt zip)
    -Upload File
    -Insert Inline
     
  3. August59

    August59 Daughters High School Graduation

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    One has to use the "Go Advanced" option to be able to utlize the "Paperclip" function. Just FYI
     
  4. keenly

    keenly Senior Member

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    where the heck is attachments?
     
  5. Emootje

    Emootje Senior Member

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    - Reply
    - "Go Advanced" option
    - Attachments (see image below)


    attachs.JPG
     
  6. keenly

    keenly Senior Member

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  7. keenly

    keenly Senior Member

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    Attached Files:

    jonnyboy likes this.
  8. Emootje

    Emootje Senior Member

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    It worked!

    Particulars: A 25-year old male was referred for autonomic function test with a clinical impression of: Dysautonomia of unknown cause. He is suspected to have Ehlers-Danlos syndrome.


    Results
    Cardiovascular reflexes: Resting cardiac vagal tone (CVT): was 2.64 units in the linear vagal scale (LVS) which is an abnormally very low resting cardiac vagal tone, (Normal range, 5-10 units in the LVS), associated with no Abnormal Spontaneous Brainstem Activation (ASBAs). There was very low spontaneous baroreflex function. Resting heart rate: was 91 beats/min, which is a resting tachycardia consistent with this level of CVT. Breathing: there was normal breathing at the rate of 17 breaths/min. Deep breathing: CVT was 4.88 units and the maximum CVT was 8.29 units in the LVS indicating normal respiratory modulation of CVT within the brainstem during deep breathing. Carotid massage: CVT increased by 3.1 units in the LVS showing a low cardiodepressor effect (normal increase 5-20 units), blood pressure (BP) changed by -16.0 mmHg indicating a normal vasodepressor effect (normal drop 10-25 mmHg). Baroreflex responsiveness in isometric exercise: was 4.09 ms/mmHg and 5.99 ms/mmHg was predicted from the patients height, it indicates a normal central gain of the baroreflex system. Valsalvas ratio: was normal at 1.47 (normal range, 1.2-1.8).

    Nutritive Peripheral Circulation: Supine pO2 was 69.0 (should normally be above 60 mmHg) and supine pCO2 was 41.2 mmHg (normal range; 39-44 mmHg). There was good nutritive gaseous exchange in peripheral tissues at rest. There were also good gaseous responses during deep breathing indicating normal diffusion pathway into peripheral tissues.
    Orthostasis: Cardiac response: showed a normal response in a 30:15 ratio test. BP stability: was poor, systolic BP varied by -70.0 mmHg, normal variation is <25 mmHg. Mean supine arterial BP was 92.3 mmHg indicating normal supine pressure (the normal range of supine mean arterial BP, 80-105 mmHg). Orthostatic hypotension: Postural change in diastolic BP was 18.4 mmHg, so no postural hypotension. There was good inotropic response on standing upright.

    Sympathetic function in general: There was no test done for postganglionic damage. The BP evidence suggests a normal baseline supine sympathetic tone. There was poor baseline inotropic function. Control of resistance blood vessels in skeletal muscles during isometric exercise: showed muscle sympathetic failure. There was inotropic fatigue on sitting upright. Cardioaccelerator function in isometric exercise: showed a cardioaccelerator failure. There was normal inotropic response to isometric exercise. Blood pressure response to Valsalvas manoeuvre: BP change in phase IIe was -38.8 mmHg and in phase III was -6.8 mmHg showing evidence of reduced venous return. BP change in phase IIi was 11.2 mmHg indicating a normal splanchnic sympathetic tone.

    Sudomotor function in the skin
    Vasomotor failure in the skin
    Emotional sudomotor function was not assessed
    Thermoregulatory vasomotor failure was detected in all 4 limbs

    Interpretation: The results show evidence of muscle sympathetic failure, cardioaccelerator failure but a normal splanchnic sympathetic tone in the deep target organs of the sympathetic division of the autonomic nervous system. There was evidence of reduced venous return to the heart. In the cutaneous targets, there was generalised thermoregulatory vasomotor failure. In the parasympathetic division, there was abnormally very low resting cardiac vagal tone. Baroreflex system had a normal central gain and there was normal respiratory modulation of the CVT within the brainstem during deep breathing. There was low cardiodepressor but normal vasodepressor effects of the carotid reflex. Of the non-specific tests, there was no postural hypotension, a normal Valsalva's ratio and normal response of the heart to standing upright.

    Conclusion and Recommendations: This patient has sympathetic dysfunctions in the heart and in skeletal muscles and a very low central parasympathetic activity associated with a skewed baroreflex dysfunction in which only the cardiodepressor function of the carotid is affected. The pattern of central parasympathetic disturbances suggests that this patient should be investigated for possible exposure to environmental toxins, particularly pesticides. He currently has good nutritive gaseous exchange in peripheral tissues at rest and the good gaseous responses in peripheral tissues during deep breathing indicate good diffusion pathway into tissues. The patient has inotropic fatigue during orthostasis and when sitting upright, which means he will have exercise intolerance and will fatigue easily. He therefore requires support of the inotropic function of the heart through dietary supplements.

    Dr. Peter Julu, MBChB, MSc, PhD
    Specialist Autonomic Neurophysiologist and Consultant Physician

    Peripheral Nerve and Autonomic Unit, I.N.S.
     
    jonnyboy likes this.
  9. maryb

    maryb iherb code TAK122

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    Keenly I had this test also if I remember it cost about 800, I showed a copy to my GP who flicked it back across the desk dismissively. Hope you get better treatment.
     
  10. Esther12

    Esther12 Senior Member

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    I'd try to get the Ehlers-Danlos syndrome diagnosis checked out, and maybe confirmed. Have you spoken to your GP about this? Or got a referral? Prof Grahame in London is the big UK guy for this I think.

    Good luck.
     
  11. Jenny

    Jenny Senior Member

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    Thanks for posting this Keenly. I had these tests done 3 years ago and again 3 months ago. I showed most of the same problems as you, but worse. Most of my results were worse this time than they were 3 years ago.

    I'm afraid I can't throw any light on much of this, beyond saying of course that results like these indicate autonomic dysfunction. One of my problems was unsatisfactory nutritive gaseous exchange in peripheral tissues, with signs of tissue hypoxia. My C02 was much too low (32).

    I was given a rebreathing mask to use for 2 months, and I felt quite a bit better after this treatment. I'll definitely start the mask again if (when) I start to go downhill again. I'm now on the inotropic support supplements which may be helping (not sure yet). My other main problem is very low parasympathetic activity - doc suggested exercise!

    Jenny
     
  12. sleepy237

    sleepy237 Senior Member

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    Hell
    Professor Mathias is th guy I think. Located in London. I watched this set of vids last night of a patient of his and her treatments. Hope it might help you. http://www.youtube.com/user/zillylilly20e

    Sleepy
     
  13. keenly

    keenly Senior Member

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    Hi
    there's no video there.

    I saw Mathias in December. He can do less tests than i had done. I have kept him informed and wrote to him.

    It seems to me that Dr Cheney is right and its all the heart!

    I wish other doctors here in the UK used his bison extract treatments to improve cardiac output.
     
  14. Emootje

    Emootje Senior Member

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    Low blood volume or high nitric oxide causes reduced venous return to the heart. Low blood volume is very common in ME/CFS and causes high level of noradrenaline, angiotensin II and decreases your cardiac output.


    This is very important. Pesticides are neurotoxic and can mess up your autonomic nervous system.
    http://www.aerotoxic.org/download/d...horus ester-induced chronic neurotoxicity.pdf


    And maybe this online dysautonomia book is helpful:
    http://www.ndrf.org/NDRF Patient Handbook/SecA_pp17-58.PDF
    http://www.ndrf.org/NDRF Patient Handbook/SecA_pp59-134.PDF
    http://www.ndrf.org/NDRF Patient Handbook/SecA_pp135-188.PDF
    http://www.ndrf.org/NDRF Patient Handbook/SecA_pp189-216.PDF
     
  15. sleepy237

    sleepy237 Senior Member

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    Keenly hi glad you got good testing. Was it these kinds you haad? I'm scheduled for tilt but know that is only for the heart. no sure where to go in this neck of the woods - scroll down to post by Sue New http://www.hypermobility.org/forum/viewtopic.php?f=4&t=5084 the vids on you tube may be set to only youtube users? not sure on that.
     
  16. jonnyboy

    jonnyboy

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    Thought I would add my autonomic report to this too:-

    Particulars: A 33-year old male was referred for autonomic function test with a clinical impression of: Chronic fatigue Syndrome.


    Results
    Cardiovascular reflexes: Resting cardiac vagal tone (CVT): was 6.57 units in the linear vagal scale (LVS) which is a normal resting cardiac vagal tone, (Normal range, 5-10 units in the LVS), associated with frequent Abnormal Spontaneous Brainstem Activation (ASBAs). There was normal spontaneous baroreflex function. Resting heart rate: was 63 beats/min, which is a slower than normal heart rate not consistent with this resting level of CVT. Breathing: there was normal breathing at the rate of 14 breaths/min. Deep breathing: CVT was 11.54 units and the maximum CVT was 17.77 units in the LVS indicating over-reaction of CVT within the brainstem during deep breathing. Carotid massage: CVT increased by 7.2 units in the LVS showing a normal cardiodepressor effect (normal increase 5-20 units), blood pressure (BP) changed by -2.3 mmHg indicating failure of the vasodepressor effect (normal drop 10-25 mmHg). Baroreflex responsiveness in isometric exercise: was 3.80 ms/mmHg and 2.84 ms/mmHg was predicted from the patient’s height, it indicates a normal central gain of the baroreflex system. Valsalva’s ratio: was 2.35 indicating a higher than normal Valsalva's ratio (normal range, 1.2-1.8).

    Nutritive Peripheral Circulation: Supine pO2 was 70.2 (should normally be above 60 mmHg) and supine pCO2 was 43.3 mmHg (normal range; 39-44 mmHg). There was good nutritive gaseous exchange in peripheral tissues in supine position at rest. There were good gaseous responses in peripheral tissues during deep breathing.

    Orthostasis: Cardiac response: showed a normal response in a 30:15 ratio test. BP stability: was poor, systolic BP varied by -56.0 mmHg, normal variation is <25 mmHg. Mean supine arterial BP was 67.4 mmHg indicating moderate supine hypotension (the normal range of supine mean arterial BP, 80-105 mmHg). Orthostatic hypotension: Postural change in diastolic BP was 3.3 mmHg, so no postural hypotension. There was inotropic fatigue on standing upright.

    Sympathetic function in general: There was no test done for postganglionic damage. The BP evidence suggests a low baseline supine sympathetic tone. There was good baseline inotropic function. Control of resistance blood vessels in skeletal muscles during isometric exercise: showed sympathetic failure in skeletal muscles. There was good inotropic response when sitting upright. Cardioaccelerator function in isometric exercise: showed cardioaccelerator failure. There was poor inotropic response to isometric exercise. Blood pressure response to Valsalva’s manoeuvre: BP change in phase IIe was -32.8 mmHg and in phase III was -30.8 mmHg showing evidence of reduced venous return. BP change in phase IIi was 17.2 mmHg indicating a slightly raised splanchnic sympathetic tone.

    Interpretation: The results show evidence of sympathetic failure in skeletal muscles, cardioaccelerator failure but a slightly raised splanchnic sympathetic tone in the deep target organs of the sympathetic division of the autonomic nervous system. There was evidence of reduced venous return to the heart. In the parasympathetic division, there was normal resting cardiac vagal tone. Baroreflex system had a normal central gain but there was over-reaction of the CVT within the brainstem during deep breathing. There was normal cardiodepressor but failure of the vasodepressor effects of the carotid reflex. Of the non-specific tests, there was no postural hypotension, higher than normal Valsalva's ratio but normal response of the heart to standing upright.

    Conclusion and Recommendations: This patient has a slightly raised sympathetic tone in the splanchnic vascular bed, and he has cardioaccelerator problem in the heart and sympathetic dysfunction in the skeletal muscles. The raised sympathetic tone in the splanchnic vascular bed can be compensatory to failure elsewhere, but can also be due to increased immune activity in this patient. This patient should therefore be investigated for allergy to common substances in the environment. He has normal resting central parasympathetic activity associated with skewed peripheral baroreflex function in which only the vasodepressor function is abnormal. He currently has good nutritive gaseous exchange in peripheral tissues in supine position and good gaseous responses in peripheral tissues during deep breathing. The poor inotropic response during isometric exercise means he will fatigue easily and therefore requires support of the inotropic function of the heart through dietary supplements.

    My thoughts:
    Since I had this test done a few months ago, I've steadily got worse. In fact no treatments whatsoever have made any apparent difference to me. Incidentally I was also diagnosed with EDS type 3 around 6 weeks ago. Which came as a huge suprise to me, as I'd never thought of myself as hypermobile, nor have I had joint problems in the past apart from sports injuries. Nethertheless I was diagnosed by one of the UK experts in it, so it is a correct diagnosis I assume. Makes me wonder how many others have this and don't even know they have it. My symptoms are primarily autonomic problems, I feel terrible after a nights sleep from lying down overnight (presumably the supine hypotension) and I cant sit or stand for very long enough. I do have fatigue but its not my worst symptom, not by a long way. I seem to have a huge amount of sympathetic excess, whihc makes my body feel likes its vibrating all over, I have this nearly the entire time. As regards the test results saying this is caused by allergy...I am not actually aware of having any allergies, never have been.

     
  17. Sea

    Sea Senior Member

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    Interesting, thanks for posting. Looks like some very comprehensive autonomic testing. I don't know of any testing like that in Australia. The Tilt Table seems to be about all that is available here
     
    jonnyboy likes this.
  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    A TTT, when done by an autonomic specialist, can give you all that info. They can do a lot more than just "standing you up and waiting for you to pass out!"

    My report from my TTT was similarly comprehensive.

    Sushi
     
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  19. Sea

    Sea Senior Member

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    Sadly, while there are quite a few tilt tables and autonomic testing units around the country (well, one in each state in the capital cities), there are very few autonomic specialists who would know how to get the most information out of them.
     
  20. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Could those who administer the TTT's be "trained" with information like this? Seems like they would want to keep at the top of their game.

    Sushi
     

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