Dysautonomia (Autonomic Dysfunction) Community
One day happy and healthy, next a nightmare begins...
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This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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One day happy and healthy, next a nightmare begins...

Possibilities that occurred:
- car accident (diagnosed with severe whiplash and possible head injury- didnt hit head tho)
- tb testing (for volunteer position)
- tfcc tear in wrist
Very healthy one day and the next vertigo, numbness and tingling, headaches, feeling faint, constipation, night sweats, cold and heat intolerance, ear symptoms, blurry vision, some months don't get menstrual cycle (use to always be regular) and so on...
Had MRI's, MRA, Ct scan (head, chest and abdominal), spinal tap, seen ear nose and throat specialist, gastro, endo, rheumatologist (a few), MS specialist, Neurologist, Allergist etc...
MRI (all three came back with demyelinating disease) but spinal and all other tests came back negative for MS. They speculated from initial tests possible sjogren's, vasculitis, ms...but repeated tests a few months later on antibodies that no vascular disease. Seen a doc who says that I may have dysautonomia and regional pain disorder (from wrist injury). This all started two weeks after my car accident so I never thought it could be related. With new MS research speculations that may be caused by narrowing of jugular vein thus restricting blood flow and with dysautonomia the sympathetic and parasympathetic nerves are damaged- could this be the cause for possible brain injury and dysautonomia from trauma to the neck? I just want to live again ;( I have gone all organic, only eat fresh fruit, vegetables, hormone free meats, filtered water, no alcohol, drink plenty of fluids, take omega, magnesium, vitamin c and d and q10 supplements, exercise regularly (despite world spinning sometimes)- you name it, I have done it in my quest to find a way to be the way I once was. My question- can a severe whiplash cause dysautonomia? I need to understand what is happening to me...It is not stress, I have a psychology degree (I am pretty in tune with myself) and would be happy if I did not experience this unpredictable symptoms that can often be debilitating.
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726204_tn?1285879778
Hiya.  Many people with these conditions feel themselves to be perfectly healthy and then, suddenly they are hit by a multitude of symptoms that either disable them or seriously efferct the quality of their life.  Many things can trigger this for them, including trauma, head injuries, infection, surgery amongst some.  So it is possible that your accident could have triggered your dysautonomia symptoms but you are also right to query other causes, and I would not rule anything out yet.  

As well as looking for causes relating to the neck, there are other causes that should be looked for.  Have you had a full hormone panel done, including cortisol levels, addisons disease as well as others can cause the symptoms you named above.  

Do you know what your BP and heart rate are like?

Is the research you mention that of chronic cerebrospinal venous insufficiency and the work of Dr Franz Schelling and professor Zamboni et al?
They are working on unusually swollen / varicose veins close to the spinal cord, and jugular vein in relation to how it affects the circulation and induces sporadic lethargy and later neurological complications. Their research relates to multiple sclerosis, but I suspect this abnormality might be responsible for inducing other illnesses and symptoms so it could be worth having a doplar scan to see if there are any unusual bulges and kinks in the veins. If there are then there is a possibility that surgery and / or inclined therapy could solve the problems.




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How Awesome of you to take the time to reply and share your information ; Thank you;;
Not sure if I have had the tests above...I went to emergency 7 times (heart, oxygen, urinalysis, blood tests). Then admitted for neurological exam- MRI, MRA, CT, SPINAL TAP etc...Have been seen by ear, nose and throat doc, gastro, endo, gyno, rheuma, neuro...very exhausting to say the least. First they thought MS (all mri came back with demyelinating disease) but spinal negative. Then they thought sjogren or vascular b/c my anca and panca were off the charts but follow up testing came back fine. Rheuma said fibro from car accident. Believe I was checked for addisons. This week a doc said dysautonomia but he now specializes in ortho so cant treat me (makes no sense but..). Neuropsych testing came back with brain injury but makes no sense to me as I did not hit my head and the severity of symptoms persist a year and half later. My head did whip pretty hard but really, a brain injury? I know this is something more just cant figure it out. I will check in to the above suggestions (doplar and hormone panel). I have endlessly tried everything- gluten removed, organic, allergy testing, chiro, massage, acupuncture etc...The severity actually began after getting my first massage after accident (vertigo severity etc..). So maybe you are on to something regarding veins near spinal cord. Really appreciate your response! Thank you!!! :)
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Avatar_f_tn
Sorry...wouldnt the spinal tap show chronic cerebrospinal venous insufficiency ?
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726204_tn?1285879778
Hiya, I am not sure if a spinal tap would show chronic cerebrospinal venous insufficiency, but the use of neck magnetic resonance venography, Doppler sonography and selective venography is used for diagnosis of this.  

Please keep us updated and hopefully your doctors will figure this out for you x Others here may have more advice for you and give you their insight x
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612876_tn?1355518095
(Sorry to butt in on this, Eve.) No, a spinal tap looks at what is in the spinal fluid (e.g., looking for blood which would be indicative of bleeding in the brain), whereas whenever you speak of some form of "venous insufficiency" you are referring to the *function* of the blood vessels and this is assessed through more dynamic forms of testing.

Just as your doctors have come up with various hypotheses of diagnoses based upon preliminary test results (Sjogren's, etc.) and then conducted follow-up testing which will give a definitive answer as to whether that is or is not all/part of your diagnosis, I would recommend that you follow through on the suggestion of dysautonomia.  There is testing that can either confirm or rule out a diagnosis of dysautonomia.  Have you had holter monitoring, an echocardiogram, or (most importantly) a tilt table test?  Other possible tests would be serum/urine electrolyte levels, serum/urine catecholamine panels, metabolic stress testing or stress echocardiogram, and maybe even more targeted autonomic testing (depending on what is available in your area--most hospitals do not have much available when it comes to this).  Unless I missed it, I don't think i saw the specialist you'll likely need to see for this testing--an electrophysiologist-cardiologist (or EP-cardiologist).  That's the person who does holters, echos, stress testing, and often tilt table tests as well.  They may be able to order the lab work too, if it seems necessary in your case depending on the results of the other tests.

Most important is to have a tilt test performed and interpreted by a doctor who is experienced in diagnosing dysautonomia.  The test is useless if not properly interpreted, and sadly, anecdotal evidence seems to show that there is no shortage of doctors who perform this test but do not know how to properly interpret it to diagnose all forms of dysautonomia; patients have sometimes gone for years with a misdiagnosis because of a misread tilt table test until having the data from the test re-interpreted by a dysautonomia specialist or having the test repeated at a dysautonomia clinic.  

I'm sorry if I missed any other questions you have.  I'm a little brain-foggy at the moment, so respond back here and ask again if I'm missing something or anything else pops up.  And please do keep us "in the loop."  We'll be keeping you in our thoughts.  This time of ambiguity whilst you're searching for the right fit in a diagnosis so that you can move on to getting some sort of treatment is such a struggle, and we've all been there!
-Heiferly
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