Apr 30, 2011

Agent Orange - is there a POTS connection?

Is there a connection between POTS and exposure to Agent Orange? Maybe. The answer is not that simple.

I have noticed several POTS patients posting comments on web forums about one or both of their parents being exposed to Agent Orange during the Vietnam War. My father was exposed to it as well in Vietnam, so I started to look into it.

What really peaked my interest is that several of the conditions linked to Agent Orange exposure are the same as or similar to illnesses that are linked to POTS. For example, about 1/3 of patients with POTS have some form of peripheral neuropathy, and peripheral neuropathy has been conclusively linked to Agent Orange exposure. Another rare disease, amyloidosis, is also linked to both Agent Orange and POTS.

What is Agent Orange?
Agent Orange is the code name the US Military gave to a herbicide is sprayed in Vietnam during the Vietnam War, between 1961 and 1971.  It was called Agent Orange because it was shipped in large metal drums with an orange strip on it.  They also used Agent Blue (another chemical with a blue stripe on the container) and other "agent" colors, but Agent Orange is the one that became infamous because of its devastating health and environmental consequences.  It was used to destroy and strip the foliage from Vietnamese forests to hinder the Viet Cong (for you youngsters-they were the ones the U.S. was fighting).  As if that wasn't bad enough, the U.S. military also sprayed agent Orange on rural farms, to force the Vietnamese peasants to flee the countryside and migrate to U.S. military controlled cities, which in theory was supposed to deprive the Viet Cong forces of supplies and food.  Whether it did that is debatable, but the bottom line is that if you mother or father was anywhere in Vietnam between 1961 and 1971, they were almost certainly exposed to Agent Orange, maybe even multiple times.

Agent Orange is a mixture of two chemicals:
2,4,5-Trichlorophenoxyacetic acid (called 2,4,5-T)  and  2,4-Dichlorophenoxyacetic acid
Towards the end of the Vietnam War, it was revealed to the public that the 2,4,5-T was contaminated with TCDD and that TCDD caused many of the adverse health effects correlated with Agent Orange exposure.  TCDD is a form of dioxin and has been described as "perhaps the most toxic molecule ever synthesized by man."  It was produced as a by-product of the Agent Orange production process by the Monsanto Corporation.  Monsanto knew that its 2,4,5-T was contaminated with TCDD and informed the US government in 1952, years before the Vietnam War.  Monsanto is one of the largest agricultural companies in the world - besides their Agent Orange poison, they are also infamous for introducing the world to DDT (another deadly pesticide) and genetically modified food.

The U.S. government, after years of denying any ill health effects caused by Agent Orange, finally admitted that "acute and subacute" peripheral neuropathy can be caused by Agent Orange, along with a long list of other serious health problems. There is now a program under which Vietnam Veterans can apply for health care and financial assistance if they can prove they were exposed to Agenct Orange in Vietnam, and that they developed peripheral neuropathy within a year after their exposure. So if you're a veteran and you were exposed to Agent Orange and you developed peripheral neuropathy 10 years after you left Vietnam, you're out of luck in terms of getting help from the Veterans Administration.  The VA asserts that neuropathy that is persistent and does not improve is "chronic" peripheral neuropathy, which they claim is not caused by Agent Orange exposure in Vietnam.

Personally, I think this is baloney.  It took decades for impacted vets and their families to convince the government to do some research to connect ANY illness to Agent Orange exposure in Vietnam. The only reason chronic peripheral neuropathy hasn't been "proven" to be connected to Agent Orange is probably because no one has done any comprehensive studies on the number of Vietnam vets who have "chronic" peripheral neuropathy. Who would fund these expensive, long-term studies anyway? Surely not the big chemical companies who make these toxic chemicals (like Monsanto). And not the government, because those same companies use lobbyists to pressure government regulators and elected officials NOT to spend taxpayer dollars researching the negative health effects of the toxic chemicals they make their money off of.  So yes, this sounds like a big conspiracy theory, but sadly that's the way Washington works sometimes.

Besides acute and subactue peripheral neuropathy, there are many other serious health problems that the federal government does acknowledge ia caused by exposure to Agent Orange. As of April 2011, that list includes:

AL Amyloidosis - A rare disease caused when an abnormal protein, amyloid, enters tissues or organs.  Amyloidosis can be an underlying cause of POTS in some patients.

Chloracne (or Similar Acneform Disease) - A skin condition that occurs soon after exposure to chemicals and looks like common forms of acne seen in teenagers. Under VA's rating regulations, chloracne (or other acneform disease similar to chloracne) must be at least 10% disabling within 1 year of exposure to herbicides.

Chronic B - cell Leukemias-A type of cancer which affects white blood cells. VA's regulation recognizing all chronic B-cell leukemias as related to exposure to herbicides took effect on October 30, 2010.

Diabetes Mellitus (Type 2) - A disease characterized by high blood sugar levels resulting from the body’s inability to respond properly to the hormone insulin.  Note that diabetes can cause autonomic neuropathy, which can be an underlying cause of POTS.

Hodgkin’s Disease - A malignant lymphoma (cancer) characterized by progressive enlargement of the lymph nodes, liver, and spleen, and by progressive anemia.

Ischemic Heart Disease - A disease characterized by a reduced supply of blood to the heart, that leads to chest pain. VA's regulation recognizing ischemic heart disease as related to exposure to herbicides took effect on October 30, 2010.

Multiple Myeloma - A cancer of plasma cells, a type of white blood cell in bone marrow.

Non-Hodgkin’s Lymphoma - A group of cancers that affect the lymph glands and other lymphatic tissue.

Parkinson’s Disease - A progressive disorder of the nervous system that affects muscle movement. VA's regulation recognizing Parkinson's disease as related to exposure to herbicides took effect on October 30, 2010.  Interestingly, Parkinson's Disease has many overlapping symptoms with the various forms of autonomic neuropathy and dysautonomia.

Porphyria Cutanea Tarda - A disorder characterized by liver dysfunction and by thinning and blistering of the skin in sun-exposed areas. Under VA's regulations, it must be at least 10% disabling within 1 year of exposure to herbicides.

Prostate Cancer - Cancer of the prostate; one of the most common cancers among men.

Respiratory Cancers - Cancers of the lung, larynx, trachea, and bronchus.

Soft Tissue Sarcoma (other than Osteosarcoma, Chondrosarcoma, Kaposi’s sarcoma, or Mesothelioma) - A group of different types of cancers in body tissues such as muscle, fat, blood and lymph vessels, and connective tissues.

As you can see, several of these illnesses were only recognized by the VA to be connected to Agent Orange exposure in 2010 - that's more than 30 years after the Vietnam war ended! Heaven only knows how many brave men and women who served out country suffered and died from these terrible illnesses without getting any help from the government that intentionally and knowingly exposed them to these deadly poisons.

What's worse, is that it is clear that Agent Orange does not only impact the men and women exposed to it - it effects their children as well. This can be seen in the thousands upon thousands of Vietnamese children who have been born with all sort of horrible birth defects since the U.S. government sprayed over 20 million gallons of Agent Orange throughout the Vietnamese countryside.

While out government has been reluctant to admit there are any ill health effects attributable to Agent Orange, some progress has been made. In 1996 President Clinton launched an initiative to compensate the children of Vietnam veterans exposed to Agent Orange who were suffering from spina bifida, after research showed a strong correlation between exposure and this very rare and sometimes fatal disease. The law was finalized as of 2003.

The VA also recognized a long list of birth defects in children born to women who served in Vietnam and were exposed to Agent Orange, including but not limited to:
Spina bifida
Cleft lip and cleft palate
Congenital heart disease
Congenital talipes equinovarus (clubfoot)
Esophageal and intestinal atresia
Hallerman-Streiff syndrome
Hip dysplasia
Hirschprung's disease (congenital megacolon)
Hydrocephalus due to aqueductal stenosis
Imperforate anus
Neural tube defects
Poland syndrome
Pyloric stenosis
Syndactyly (fused digits)
Tracheoesophageal fistula
Undescended testicle
Williams syndrome

As more research is done, and as veterans and their families continue to advocate for proper medical treatment and compensation of Agent Orange victims and their children, it is likely that more diseases and birth defects will be added to this list.  Maybe POTS will be on this list some day, or at least the form of POTS that can be attributed to autonomic neuropathy.

If you have a parent who served anywhere in Vietnam or may have otherwise been exposed to Agent Orange (some people were exposed in chemical factories, storage facilities or military bases in the U.S.), please contact me by posting a message below.  I will not publish your post unless you say it's OK. You may also want to register with the independent non-profit group that maintains a National Birth Defect Registry of Agent Orange connected birth defects. Basically, how it works is that you enter data about any health problems seen in your family in children whose parents were exposed to Agent Orange. Concerned scientists then use this data to advocate for further research into the more prevalent illnesses that show up in the survey and urge the government to admit responsibility if a link between a particular health problem and Agent Orange is established.  This is the groundwork needed to get the VA to acknowledge other diseases are caused by Agent Orange, which will lead to those suffering with Agent Orange illnesses to be able to get the medical care they need from the government.

If you scroll down a few pages in their Birth Defect Presentation, you can see that there are many more illnesses more prevalent in the children of Vietnam veterans compared to non-veterans, than those that are currently recogized by the US government.  Everything from dyslexia, to rare cancers to asthma - and this isn't surprising since dioxin, which is found in Agent Orange, is considered by scientists to be the most toxic chemical known to man.

My dad had significant exposure to Agent Orange when he served in the U.S. Military in Vietnam. Dad has had a long list of serious health problems since he returned from his tour of duty over 30 years ago: cancer, loss of a kidney, heart problems, strokes, asthma and peripheral neuropathy. My mom seems to be healthy as a horse, so we always joked that my health problems must have come from dad's bad genes.

Well, I'm not joking about it anymore. I was diagnosed with "profound autonomic neuropathy" nine months after the onset of my POTS symptoms. To date, no doctor has been able to come up with any explanation for what may have trigger my neuropathy. And the autonomic neuropaty I have seems to be worst in my lower legs and hands, which follows the typical pattern of "peripheral neuropathy." Peripheral neuropathy just refers to the fact that the damaged nerve fibers are peripheral to your central nervous system - that is, peripheral nerves are those other than the ones in your brain and spinal cord. Peipheral neuropathy typically develops at the further points of your nervous system first - your toes, then your ankles, then your calf, then you thigh, etc. At the same time, it can first occur in your fingers, then your palm, then your wrist, etc.

Peripheral neuropathy commonly impacts your sensory nerves, which control your sensation of hot/cold, pressure and pain. My dad has peripheral neuropathy that affects his sensory nerves. My sister and I noticed that our dad's feet were numb when we were little kids in the 1980s. We would tickle our dad's foot when he was relaxing on the couch watching a hockey game, and he wouldn't even feel it. Then, because we were curious rotten little kids, we would stick small sewing needles in his toes, and he still couldn't feel it. He was like a human science project to us.  We didn't know it at the time, but dad couldn't feel the needle in his toes because he had peripheral neuropathy of his sensory nerves.

Peripheral neuropathy can also impact your motor nerves. These are the nerves that control your physical movement and your muscles. These nerves help you walk and point your toes and grasp things with your hands, like pens and utensils. If your motor nerves are damaged, you can lose your ability to walk or use your other muscles. Since peripheral neuropathy usually starts at the furthest nerves form the brain, you are most likely to feel peripheral neuropathy of your motor nerves in your hands and feet. We are not sure if my dad's peripheral neuropathy is impacting his motor nerves at this point, but I suspect that is may be impacting him because he often trips when he is walking and sometimes his knees just give out on him and he trips or falls over.

Finally, peripheral neuropathy can also impact your autonomic nerves.  These are the nerves most often involved in POTS.  POTS is a form of dysautonomia, and dysautonomia means dysfunction of the autonomic nervous system.  As I mentioned above, they found that I had "profound autonomic neuropathy" after then examined a skin biopsy from my left leg.  I think my dad may have some autonomic neuropathy as well, because he has heart arrhythmia problems just like me, and breathing problems just like me. I'm hoping we can get a small tissue biopsy from his leg, like I had, so we can identify exactly what types of nerves are impacted by his neuropathy, and to what extent his nerves are damaged.

So we're not positive that Agent Orange can cause POTS, but there is significant evidence pointing in that direction.  If Agent Orange causes peripheral neuropathy, and peripheral neuropathy can be the underlying cause POTS, it is very possible.  Only time and more research will reveal the truth. 


  1. WOW! I agree with you. My dad is a vietnam vet and I have POTS and neuropathy and if you read the VA website versus the causes of POTS,they are very,very similar and a lot of them are rare causes.

  2. I have dysautnomia/OI but have not had tilt table testing yet...just a quick test, ya know sit then jump up while we are taking your blood pressure. My father is a vietnam vet and my brother and I both have dysautnomia. We do not have familial dysautonomia as we dont know of anyone of our ancestors who was jewish. I am looking into getting more testing done, i just cant decide where to go.


  3. Having had CIDP and Autonomic Neuropathy for 23 years, I was finally diagnosed in 2004 after decades of torture by the medical systems.

    In fighting back I established a website at www.neuropathysupportnetwork.org and to help others fight back. Took six years under the old VA false claims, but I won my disability fight. The VA just recently added Early Onset Chronic Peripheral Neuropathy to the list of conditions presumed to be cause by Agent Orange Exposure. The early onset is a bit of a challenge to veterans, but the guidance for veterans mentioned below tells them how to fight this requirement.

    Please note the following information regarding Peripheral Neuropathy for if anyone with POTS has Peripheral Neuropathy then it is now linked to exposure to Agent Orange by the VA and does not resolve as previously claimed by the VA. Please make sure any veteran exposed to Agent Orange receives this following information. See the following:

    Just recently the VA changed what they have said for decades... and now recognize Early Onset Chronic Neuropathy as presumptively caused by Agent Orange exposure

    Proof that the VA notes that Agent Orange DOES cause Chronic Peripheral Neuropathy is at this link: www.publichealth.va.gov/exposures/agentorange/diseases.asp

    Make sure you read the information in the guidance for veterans at this link: http://neuropathysupportnetwork.org/blog/2013/01/guidelines-for-veterans-va-proposed-law-agent-orange-and-peripheral-neuropathy/#more-1086

    Proof of symptoms of Neuropathy that may be helpful at this link: http://neuropathysupportnetwork.org/blog/2013/04/symptoms-of-neuropathy/#more-1121

    To prove the scope of causes and symptoms of neuropathy, use a copy of this document. http://www.ninds.nih.gov/disorders/peripheralneuropathy/detail_peripheralneuropathy.htm

    Follow closely the information and references in the guidelines in any appeal or submission to the VA and along with your service records, use all the above documents in appeals to the VA.

    Col Eugene B Richardson, USA (Retired) Vietnam 67-68 100% disabled veteran due to exposure to Agent Orange. www.neuropathysupportnetwork.org