A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.


Postby Perkele » Sun Nov 28, 2010 6:45 pm

I have been wondering about connection between Postural orthostatic tachycardia syndrome and CCSVI. There seems to be so much common in these two conditions.


"Postural orthostatic tachycardia syndrome (POTS, also postural tachycardia syndrome) is a condition of dysautonomia, more specifically orthostatic intolerance, in which a change from the supine position to an upright position causes an abnormally large increase in heart rate, called tachycardia. Several studies show a decrease in cerebral blood flow with systolic and diastolic cerebral blood flow (CBF) velocity decreased 44% and 60%, respectively. Patients with POTS have problems maintaining homeostasis when changing position, i.e. moving from one chair to another or reaching above their heads. Many patients also experience symptoms when stationary or even while lying down."


"The causes of POTS are not fully known. Most patients develop symptoms in their teenage years during a period of rapid growth and see gradual improvement into their mid-twenties. Others develop POTS after a viral or bacterial infection such as mononucleosis or pneumonia. Some patients develop symptoms after experiencing some sort of trauma such as a car accident or injury. Women can also develop POTS during or after pregnancy. These patients generally have a poorer prognosis.

In one large test, 12.5% of 152 patients with POTS reported a family history of orthostatic intolerance, suggesting that there is a genetic inheritance associated with POTS.

So far no one has provided an explanation for POTS which is applicable to all sufferers, however there are many theories;

Alpha-receptor dysfunction may be occurring in some POTS patients. Alpha-1 receptors cause peripheral vasoconstriction when stimulated. Alpha-1 receptor supersensitivity may be causing dysautonomia in some patients.

Beta-receptor supersensitivity may occur with hyperadrenergic states in some people with POTS.

Hyperdopaminergic states may be the underlying problem for some people with orthostatic intolerance. Some patients have been found to have a significant increase in upright dopamine levels. Free plasma norepinephrine also tends to be higher in these patients.

Reduced venous return is one of the main mechanisms that causes POTS symptoms. Venous return can be reduced due to conditions such as low plasma volume (hypovolemia), venous pooling and denervation. A hyperadrenergic state may result as the body attempts to compensate for these abnormalities.

Sympathetic Overactivity is observed in many POTS patients. The sympathetic overactivity can be secondary to a number of factors, some of which may be peripheral denervation, venous pooling, or end-organ dysfunction. Sympathetic underactivity can also occur in some forms of orthostatic intolerance, such as pure autonomic failure.

Symptoms just to name few:

* lightheadedness, sometimes called pre-syncope (pre-fainting) dizziness (but not vertigo, which is also called dizziness)
* exercise intolerance
* extreme fatigue
* syncope (fainting)
* Excessive thirst (polydipsia)
* cold extremities
* chest pain and discomfort
* disorientation
* tinnitus
* dyspnea
* headache
* muscle weakness
* tremulousness
* visual disturbances
* brain fog
* burnout
* decreased mental stamina
* depression
* difficulty finding the right word
* impaired concentration
* sleep disorders"

Ring any bells?

More about POTS in Wikipedia: http://en.wikipedia.org/wiki/Postural_o ... a_syndrome

There seems to be at least one person with POTS that has gone through angioplasty for her CCSVI. She is blogging about it in her blog http://bobisdysautonomia.blogspot.com/

Got to put her veins in here because pics dont lie

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Postby NZer1 » Tue Nov 30, 2010 2:27 pm

Dr. Diana Driscoll With an Exciting Ehlers-Danlos Update
Posted on November 29, 2010 by Diana Driscoll| Leave a comment
What a journey this has been! Although a very challenging time, I feel incredibly blessed to know so many others on the same path. Please know that you help me, likely much more than I help you!

I wanted to reach out to those of you who suffer from POTS (or any autonomic dysfunction). This has been the most difficult aspect for most of us to deal with, and those of you who know me, understand. The symptoms can include the inability to stand beyond a few minutes, tachycardia, digestive issues, poor temperature control, anxiety, tremors, balance problems, twitches, myoclonus, fasciculation, memory problems, dizziness, fatigue, nausea, abdominal pain, weakness, hormonal fluctuations, difficulty breathing, and… well, why don’t we just stop there and take a breath?

We’ve also noticed that too many people with EDS also develop multiple sclerosis. Some of you are aware that a soft cervical collar at night time has helped us, as has Diamox (a diuretic that crosses the blood-brain barrier, taking fluid pressure off of our brains). This has been a consistent finding, but no one has been able to explain to me why it helps, and why it doesn’t eliminate the problem entirely – until now.

May I please introduce you to Dr. Michael Flanagan? He is a brilliant doctor who has been studying and researching this condition (and how it relates to M.S., Parkinson’s, and Alzheimer’s) for about 25 years! The anatomy of the skull and upper cervical spine is complicated, but the CSF (cerebral spinal fluid) flow pattern is extremely difficult to understand. Dr. Flanagan understands it down to the tiniest detail. He was able to explain to me what I have been unable to put into words for years. He knows why we can be vertical, but not for long, and feel better when we are horizontal, but not for long.

We are all different, of course, so please bear that in mind when you review his research. For our family, however, he is dead on. It’s a bit complicated to go into too much detail here, but understand that it all relates to sluggish flow of the CSF and our change in posture causing the brain to sink and rise, leading to chronic brain edema and a type of “normal pressure hydrocephalus”.

We will be having some imaging done to see if I have any blockages in my veins that could be opened (with a balloon or stent) to help with the condition. This is such a difficult condition to treat because it is dynamic (it changes with position, for example), yet medications are static (they cause one change).

Dr. Michael Flanagan just published a book on this subject called The Downside of Upright Posture. I would encourage all of you to purchase it. He also has a blog that I highly recommend: The Upright Doctor

You can reach out to him, also. I don’t know how he answers the volume of correspondence he receives, but he does so with empathy and an incredible level of knowledge. The only thing I ask of you all is that if he helps you, please spread the word. He deserves so much more than accolades for all of his work, but for now, we should be vocal with our appreciation. He has sacrificed much for all of us.

I’ll have more updates for you soon, but until then, never give up.

Dr. Diana
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