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Thursday, September 30, 2010

Bill Awaiting Presidential Signature includes CIA Gulf War Declassification Measure

 

Written by Anthony Hardie

(91outcomes.com) – The annual Intelligence Authorization bill, passed by both the Senate and the House this week and now awaiting signature by the President, includes an important measure for Gulf War Veterans. 

Tucked into this year’s annual Intelligence Authorization bill at the request of U.S. Rep. Rush Holt (D-NJ-12) is a long anticipated measure requiring the CIA to declassify records from the 1991 Persian Gulf War.

According to a press release from the office of Rep. Holt, “Holt secured language in the bill directing the Director of the CIA to conduct a classification review of CIA records that may be relevant to helping veterans, scientists, and medical providers better understand the scope of potential toxic exposures among Operation Desert Storm veterans.”

"Ill Gulf War veterans have been waiting for nearly two decades for our government to make public any information in its possession about the kinds of toxic agents they may have been exposed to during and immediately after the 1991 war," Holt said in the statement. "This mandated declassification review is a long overdue step towards meeting that goal."

  It is no coincidence that a key staff member who was instrumental in this  legislation was Patrick Eddington, a former CIA analyst whose book, “Gassed in the Gulf,” rocked Washington when it exposed evidence showing Gulf War troops were indeed exposed to Iraqi chemical warfare agents during the war, contrary to assertions by Department of Defense and Department of Veterans Affairs officials. 

Holt’s measure may help bring more evidence to bear in unlocking the key to treating Gulf War veterans’ illnesses since knowing the exact causes of the brain damage may aid in developing effective treatments for the resultant neurological and immunological disease in Gulf War veterans.

According to a July 2010 Institute of Medicine report, approximately 250,000 of the 696,842 U.S. troops who served in the 1991 Gulf War remain debilitated by chronic multi-symptom illness, a condition that IOM made clear in its report cannot be linked to any psychiatric condition, a flawed but longstanding assertion of Defense officials in the 1990’s. 

It is expected that President Obama will sign the bill into law in the upcoming days.

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VA Releases Gulf War Veterans’ Illnesses Task Force Report

 

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In August 2009, VA Secretary Eric Shinseki directed a comprehensive review of the Department’s approach and practices in meeting the needs of Veterans of the 1990 – 1991 Gulf War.

The September 29, 2010 final report on that review is now available.

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President Expected to Sign New Gulf War Legislation, but What Does it Really Mean for Ill Gulf War Veterans?

UPDATED 2:02 P.M. CT, 09/30/2010

Written by Anthony Hardie

(91outcomes.com) – The annual veterans benefits bill passed by Congress this week and sent to the President for his expected signature contained measures of particular interest to Gulf War veterans.

In the Senate summary of the bill, it sounds promising on its face:

Section 805: National Academies review of best treatments for chronic multisymptom illness in Persian Gulf War veterans.

  • Would direct the Secretary of Veterans Affairs to enter into an agreement with the National Academies Institute of Medicine to carry out a comprehensive review of best treatment practices for chronic multisymptom illness in Persian Gulf War veterans and develop a plan for dissemination of best practices throughout VA.
  • Under such an agreement, would require the Institute of Medicine to convene a group of experts in chronic multisymptom illness in Gulf war veterans.
  • Would require the Institute of Medicine to submit a report, including legislative and administrative recommendations, to the Secretary of Veterans Affairs and the Committees on Veterans’ Affairs of the Senate and House of Representatives no later than December 31, 2012.
  • VA would be required to fund the Institute of Medicine review.

Section 806: Extension and modification of National  Academy of Sciences reviews and evaluations on illness and service in Persian Gulf War and Post 9/11 Global Operations Theaters.

  • Would extend the review and evaluation of chronic multisymptom illness in Persian Gulf War veterans by the National Academy of Sciences to October 1, 2015.
  • Would direct the National Academy of Sciences to disaggregate the data for theaters of operation before and after September 11, 2001, and to compile two separate reports, one pre- and one-post September 11.
  • Would extend the sunset for this report provision to October 1, 2018.

It’s great that Congress has gotten the message that the primary focus for the IOM-estimated 250,000 veterans of the 1991 Gulf War still suffering from chronic multi-symptom illness related to hazardous agent exposures two decades ago is about finding effective treatments.

However, it is unclear how that the IOM will carry out its mission.  Typically, the IOM has reviewed existing research already concluded, published, and peer-reviewed.  Since there focus on treatments for GWI is relatively new, IOM won’t be finding much if that’s the method they will pursue.

What needs to be developed is a comprehensive research program to develop effective treatments.  And, like Gulf War veterans have been saying for years, those treatments need to be based on the outcomes of known Gulf War toxic exposures.

Congress should be applauded for including a measure that is clearly focused on treatments rather than “stress” or trying to determine if Gulf War veterans are really sick – we are.  Our disability payments probably cost the taxpayers far more than if the federal government had honed in on treatments in the first place rather than denial.

However, it remains to be seen if this new legislation will actually produce something meaningful to improve the health and lives of ill Gulf War veterans, or simply summarize what we already know:  effective treatments for the underlying GWI issues do not yet exist, so the distant second best effort remains to put pharmaceutical band-aids on the dozens of individual symptoms of a terrible and insidious ailment.

A detailed summary of the Veterans’ Benefits Act of 2010 is available here: LINK

The full text of the bill sent to the President, is available here: LINK

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Wednesday, September 29, 2010

VA Q&A: Presumptive Service-Connection for Nine Rare Disease Endemic to Southwest Asia and Afghanistan Service

 

QUESTIONS AND ANSWERS

“Presumptions of Service Connection for Southwest Asia and Afghanistan Service”

September 28, 2010

1. What does this final rulemaking do?

This final regulation implements a decision by the Secretary of Veterans Affairs that there is a positive association between service in Southwest Asia beginning on August 2, 1990(including Iraq), or in Afghanistan on or after September 19, 2001, and the subsequent development of certain infectious diseases. The effect of this final regulation is to establish a presumption of service connection for these diseases for qualifying service during those periods.

Under VA regulations, the Southwest Asia theater of operations includes Iraq, Kuwait, Saudi Arabia, the neutral zone between Iraq and Saudi Arabia, Bahrain, Qatar, the United Arab Emirates, Oman, the Gulf of Aden, the Gulf of Oman, the Persian Gulf, the Arabian Sea, the Red Sea, and the airspace above these locations.

2. What types of claims for VA benefits does the final rulemaking affect?

The final rule affects compensation claims filed by Veterans with service during certain time periods in Southwest Asia or in Afghanistan, for Brucellosis, Campylobacter jejuni, Coxiella burnetii (Q fever), Malaria, Mycobacterium tuberculosis, Nontyphoid Salmonella, Shigella, Visceral leishmaniasis, and West Nile virus, that are pending before VA or received on or after the rule change takes effect. Pending claims include claims on appeal or that have not yet been finally decided.

3. Why is this final rulemaking necessary?

The Secretary, in accordance with The Persian Gulf War Veterans Act of 1998, has determined that there is a basis to establish a presumption of service connection at this time, based on service during certain time periods in Southwest Asia or in Afghanistan for certain time periods, for Brucellosis, Campylobacter jejuni, Coxiella burnetii (Q fever), Malaria, Mycobacterium tuberculosis, Nontyphoid Salmonella, Shigella, Visceral leishmaniasis, and West Nile virus as identified in the National Academy of Sciences (NAS) October 16, 2006 report, titled “Gulf War and Health Volume 5: Infectious Diseases.” In this regard, the Secretary of Veterans Affairs determined, based upon the NAS report, that there is a positive association between service in Southwest Asia or in Afghanistan, and the subsequent development of the listed infectious diseases.

4. How does this final rulemaking help veterans?

The final rule will expedite the processing of claims for service connection. A claimant will not be required to establish, with medical evidence, an actual connection between military service in Southwest Asia or Afghanistan and diagnosed Brucellosis, Campylobacter jejuni, Coxiella burnetii (Q fever), Malaria, Mycobacterium tuberculosis, Nontyphoid Salmonella, Shigella, Visceral leishmaniasis, and West Nile virus. Instead, a claimant who served during certain time periods in Southwest Asia or Afghanistan, will only have to show that he or she had one of the nine diseases within a certain time after service and has a current disability as a result of that disease.


5. What are the nine new presumptive diseases?

• Brucellosis A bacterial disease with symptoms such as profuse sweating and joint and muscle pain. The illness may be chronic and persist for years. It must be at least 10% disabling within 1 year from the date of military separation.

• Campylobacter Jejuni A disease with symptoms such as abdominal pain, diarrhea, and fever. It must be at least 10% disabling within 1 year from the date of military separation.

• Coxiella Burnetii (Q Fever) A bacterial disease with symptoms such as fever, severe headache, and gastrointestinal problems such as nausea and diarrhea. In chronic cases, the illness may cause inflammation of the heart. It must be at least 10% disabling within 1 year from the date of military separation.

• Malaria An infectious disease caused by a parasite. Symptoms include chills, fever, and sweats. It must be at least 10% disabling within 1 year from the date of military separation or at a time when standard or accepted treatises indicate that the incubation period began during a qualifying period of military service.

• Mycobacterium Tuberculosis An illness that primarily affects the lungs and causes symptoms such as chest pain, persistent cough (sometimes bloody), weight loss and fever.

• Nontyphoid Salmonella A condition characterized by symptoms such as nausea, vomiting, and diarrhea. It must be at least 10% disabling within 1 year from the date of military separation.

• Shigella A condition characterized by symptoms such as fever, nausea, vomiting, and diarrhea. It must be at least 10% disabling within 1 year from the date of military separation.

• Visceral Leishmaniasis A parasitic disease characterized by symptoms such as fever, weight loss, enlargement of the spleen and liver, and anemia. The condition may be fatal if left untreated.

• West Nile Virus A disease spread by mosquitoes characterized by symptoms such as fever, headache, muscle pain or weakness, nausea, and vomiting. Symptoms may range from mild to severe. It must be at least 10% disabling within 1 year from the date of military separation.

The presumptive periods for each of the nine diseases have been determined on the basis of the NAS report and reflect the observation that six of the nine diseases ordinarily manifest within a short period of time following infection. The one-year period is also consistent with the existing presumption of service connection for tropical diseases found at 38 U.S.C. § 1112(a). The presumptive periods for the other three diseases are based on existing statutes and medical treatises.

6. What are the cost estimates for the nine new presumptives?

Benefit payments are estimated to be $1.5 million during the first year, $11.5 million for five years, and $36.4 million to approximately 600 Veterans and survivors over ten years.

7. What caused VA to include these presumptions now and why did it take VA nearly 4 years from publication of the IOM report to create presumptions of service connection?

The nine illnesses covered by the new presumptions are all infectious diseases and are noted in the 2006 Institute of Medicine (IOM) report, Gulf War and Health Volume 5: Infectious Diseases, as endemic to the Middle East/Southwest Asia area. In some cases, infection with one of these agents may lead to some of the chronic multi-symptom illnesses suffered by some troops of the Gulf Wars. At this time, VA does not believe there is a single Gulf War Illness or Syndrome. The issue is far more complex and varies with each individual service member’s environmental exposures during service in the early and ongoing Gulf Wars. However, VA has been treating and compensating Veterans for undiagnosed or chronic unexplained multi-symptom illnesses related to service in Southwest Asia and the Middle East for nearly two decades. The illnesses and diseases included under this umbrella are compiled by VA funded Gulf War research and verified by the Institutes of Medicine (IOM).

After the IOM published their report on October 16, 2006, then Secretary of Veterans R. James Nicholson appointed a task force that included Under Secretaries for Health and Benefits, Assistant Secretary for Policy and Planning, and the General Counsel to study the report and recommend what action he should take regarding the establishment of new presumptions. He was succeeded by Secretary James B. Peake in December 2007. The task force presented its report to Secretary Peake on January 10, 2008. After reviewing the task force report, he sent letters to Congressional leaders on January 14, 2008, informing them that he had determined that 9 infectious diseases were associated with Gulf War service and therefore presumptions of service connection were warranted. On April 2, 2009, VA published a notice in the Federal Register stating that VA was drafting regulations creating those presumptions, and that no other presumptions were warranted. On March 18, 2010, VA published a proposed rule (AN24) proposing to create those presumptions. We received 18 public comments which we responded to in the Final Rule published September 29, 2010.

8. How do Veterans know if they have any of these presumptive diseases?

The key to the new presumptions is the development of symptoms during or very shortly after service in the Middle East/Southwest Asia, usually within the same year of exposure. However, visceral leishmaniasis and Mycobacterium Tuberculosis have been granted unlimited presumption since they can develop much later.  Many of the diseases share symptoms with the flu or common illnesses such as frequent fevers or skin rashes. Veterans who served in Southwest Asia or Afghanistan who suffer chronic illness since their service in the Gulf should seek treatment at a VA medical facility for diagnoses.  Veterans can find their nearest medical facility at www.va.gov.

9. When will VA start processing claims for this new regulation?

VA will begin processing claims when the final rule is published on September 29, 2010.

10. Will these claims be processed under the planned automated system intended to be used for the Agent Orange presumptives?

No, because of the small number of anticipated claims, this change does not lend itself well to the special processes being explored for the potentially very large number of Agent Orange claims we anticipate.

11. If a veteran has multiple issues (such as heart issue, knee problem, back issue) does he/she submit all three at one time or submit for the presumption first and then submit the other issues?

Veterans should file claims for all issues they believe to have been incurred in or aggravated by service at one time. If evidence supporting the presumptive disease is sufficient, it may be processed before other issues.

12. If a veteran has been denied for an issue that is now a presumption does he/she have to resubmit a claim in order to be reconsidered?  And if so, from what date would compensation be paid?

Yes, the veteran should resubmit his or her claim. If entitlement is established, service connection will be granted from the date of the publication of the final rule. For claims submitted more than one year after the publication of the final rule, VA may pay up to one year of retroactive benefits. Compensation, or additional compensation payable if the Veteran is already service connected for another disability, resulting from this rule will be payable from the first of the month following publication.

13. Does VA plan to do any special outreach to Southwest Asia and Afghanistan veterans, who either have or had a compensation claim related to the nine presumptives or are still on active duty?

VA will work closely with Veterans Service Organizations, the Department of Defense and stakeholders to ensure that potentially affected Veterans are made aware of the rule and the benefits and services available to them and their dependents.

Through the work of the GWVI-TF, VA developed a unique process to directly engage Gulf War Veterans for their ideas, questions, and concerns regarding the services and benefits they receive at the VA. The report recommends greater outreach to Veterans, and moves the outreach model from “pushing” information to Veterans towards a “pulling” model where VA “pulls” or reaches out to welcome them into the VA for health care, benefits and other services. VA will continue to strengthen its critical partnerships with Veterans Service Organizations, Non Governmental Organizations, and other Veteran advocates to help spread the word about health care and benefits for Gulf War Veterans.

14. What training did VA employees receive?

On February 4, 2010, VA issued a Training Letter to its benefits employees that provided guidance on the new process for developing and adjudicating disability claims of Gulf War Veterans based on their service. Additional information on broader environmental hazard exposure was included in a second Training Letter, issued April 26, 2010. VA also initiated new clinician training for treating Gulf War Veterans that was developed collaboratively by front-line providers, Compensation & Pension examiners, social workers, and policy experts. This training will improve the care provided to Gulf War Veterans to be more patient-centered and focused on their unique health concerns. VA has held well-attended environmental exposures seminars in Portland, Oregon, and Indianapolis, Indiana, and is scheduled to expand to other locations next year. VA’s War Related Illness and Injury Study Center program is fully operational with facilities operating in three locations: Washington, DC, East Orange, NJ, and Palo Alto, CA.

15. What is the Gulf War Task Force and what is its relationship to the nine new presumptives?

The decision to add the nine new presumptives predated the Gulf War Veteran Illness Task Force. The overarching responsibility of the Gulf War Veteran Illness Task Force (GWI-TF) is to regain Gulf War Veterans’ confidence in VA’s health care, benefits, and services and reconfirm VA is 100% committed to Veterans of all eras. The GWI-TF is not a static, one-time initiative but will continue to build on its work with annual reports issued every August. The focus centers on unanswered Gulf War Veterans’ health issues, improving access to benefits, ensuring cutting edge research into treatments, and to make sure Veterans’ concerns are heard and addressed. This includes continuing to solicit Veterans, experts, advocates and stakeholders to share their views to better inform the important work of the GWI-TF.

16. What organizations does VA partner with related to Gulf War issues?

VA has a long history of working with the Veteran Service Organizations and the Department of Defense (DoD). This is evidenced in many ways, including the the development of the Disability Evaluation Pilot Programs, the MyHealtheVet and eBenefits portals, and the Qarmat Ali medical surveillance program. DoD input for the GWVI-TF was solicited from working groups within its Health Executive Council, Office of the Surgeons General, and Office of the Assistant Secretary of Defense for Health Affairs. VA-funded research projects often involve collaborators who are located at affiliated universities, allowing VA researchers to utilize expertise that may not be available at VA. VA researchers also participate as researchers in DoD’s Gulf War Illness Research Program administered by the Congressional Directed Medical Research Programs. These programs fund innovative research to identify effective treatments, improve definition and diagnosis, and better understand pathobiology and symptoms. The Center for Disease Control (CDC) has also been very receptive to working with VA and has agreed to increase VA participation in the development of future medical surveys.

17. What is Disability Compensation

Disability compensation is a non-taxable monetary benefit paid to Veterans who are disabled as a result of an injury or illness that was incurred or aggravated during active military service. Presently, the basic monthly rate of compensation ranges from $123 to $2,673 for Veterans without any dependents.

Last year, VA received more than one million claims for disability compensation and pension. VA provides compensation and pension benefits to over 3.8 million Veterans and beneficiaries.

18. Where can I go to get more information about health care and benefits related to these new presumptives?

For information about health problems associated with military service during operations Desert Shield, Desert Storm, Iraqi Freedom, and Enduring Freedom, go to www.publichealth.va.gov/exposures/gulfwar/.

For information about how to apply for disability compensation, go to www.va.gov or http://www.publichealth.va.gov/exposures/gulfwar/compensation_benefits.asp.

Fibromyalgia News

Editor’s Note:  Fibromyalgia, a neurological condition with chronic widespread pain and other multiple, chronic symptoms, is a presumptive condition for Gulf War veterans.

Some scientists believe that Gulf War Illness is unique from fibromyalgia.  However, even if the two conditions are separate, they do not disagree that they may be closely related and may benefit from some of the same or similar treatments.

Below are some of the most recent new articles by, for and about people suffering from fibromyalgia.

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The Fatigue in Fibromyalgia: Not 'Normal Tiredness'About - News & Issues.  The fatigue experienced in fibromyalgia goes beyond "normal tiredness," according to research just published in the journal BMC Musculoskeletal Disorders. ...

The gender gapBoston Globe.  Women suffer disproportionately from irritable bowel syndrome, fibromyalgia, headaches (especially migraines), pain caused by damage to the nervous system, ...
See all stories on this topic »

A Downside to Tai Chi? None That I SeeNew York Times.  The latest and perhaps best designed study was conducted among patients with debilitating fibromyalgia, a complex and poorly understood pain syndrome. ...
See all stories on this topic »

Yoga Can Ease the Chronic Pain of Fibromyalgia — You Web News .…  By youwb.  Fibromyalgia is a chronic pain disorder that affects up to 10 million Americans, most of them women. It was identified in 1816 by a Scottish physician, but wasn't officially recognized by the American Medical Association as an illness ...
You Web News youwb.com - http://www.youwb.com/

Denver Acupuncture Center: Treatments for Fibromyalgia.  Acupuncture is one of the many TCM or Traditional Chinese Medicine treatments that are known and have been proven to be an effective therapeutic method for.
ArticleSlash - Free Article Directory - http://www.articleslash.net/

Negative Emotions Increase PainMedPage Today.  In a cohort study among 121 women -- 62 of whom were diagnosed with fibromyalgia -- pain induced by an electrical stimulus was more keenly felt after the ...
See all stories on this topic

Anger and Sadness Increase Pain in Women With and Without FibromyalgiaArthritis Today.  By Jennifer Davis 9/28/10 Researchers who set out to understand the role emotions play in fibromyalgia pain may have ended up dispelling a myth – that women ...
See all stories on this topic »

Wrong & Right Gifts for Someone With Fibromyalgia & Chronic Fatigue SyndromeAbout.com: Health.  Have you ever gotten a gift that you couldn't use because of your fibromyalgia or chronic fatigue syndrome? I get these all the time -- mostly body washes ...
See all stories on this topic »

5 fibromyalgia pain relief tips | Chronic Pain Management.   codedergal.  Five chronic Pain Management Guidelines and Chronic Pain Management Information.
Chronic Pain Management - http://chronicpainmanagement.blognub.com/

Tuesday, September 28, 2010

VA Publishes Final Regulation on Nine Rare “Presumptive” Illnesses for Gulf War, Iraq, Afghanistan Veterans

 

WASHINGTON – Secretary of Veterans Affairs Eric K. Shinseki today announced the publication of a final regulation in the Federal Register that makes it easier for Veterans to obtain Department of Veterans Affairs (VA) health care and disability compensation for certain diseases associated with service in Southwest Asia (including Iraq) or Afghanistan.

“This is part of historic changes in how VA considers Gulf War Veterans’ illnesses,” said Secretary Shinseki. “By setting up scientifically based presumptions of service connection, we give these deserving Veterans a simple way to obtain the medical and compensation benefits they earned in service to our country.”

The final regulation establishes new presumptions of service connection for nine specific infectious diseases associated with military service in Southwest Asia beginning on or after the start of the first Gulf War on Aug. 2, 1990, through the conflict in Iraq and on or after Sept. 19, 2001, in Afghanistan.

The final regulation reflects a determination of a positive association between service in Southwest Asia or Afghanistan and nine diseases and includes information about the long-term health effects potentially associated with these diseases:

  1. Brucellosis,
  2. Campylobacter jejuni,
  3. Coxiella Burnetii (Q fever),
  4. Malaria,
  5. Mycobacterium tuberculosis,
  6. Nontyphoid Salmonella,
  7. Shigella,
  8. Visceral leishmaniasis, and
  9. West Nile virus.

With the final rule, a Veteran will only have to show service in Southwest Asia or Afghanistan and that he or she had one of the nine diseases within a certain time after service and has a current disability as a result of that disease, subject to certain time limits for seven of the diseases. Most of these diseases would be diagnosed within one year of return from service, through some conditions may manifest at a later time.

For non-presumptive conditions, a Veteran is required to provide medical evidence to establish an actual connection between military service in Southwest Asia or Afghanistan and a specific disease.

The decision to add these presumptives was made after reviewing the 2006 report of the National Academy of Sciences Institute of Medicine (NASIOM), titled, “Gulf War and Health Volume 5: Infectious Diseases.”

The 2006 report differed from the four prior reports by looking at the long-term health effects of certain diseases determined to be pertinent to Gulf War Veterans. Secretary Shinseki decided to include Afghanistan Veterans in these presumptions because NAS found that the nine diseases are also prevalent in that country.

The 1998 Persian Gulf War Veterans Act requires the Secretary to review NAS reports that study scientific information and possible associations between illnesses and exposure to toxic agents by Veterans who served in the Persian Gulf War.

While the decision to add the nine new presumptives predates VA’s Gulf War Veteran Illness Task Force (GWI-TF), the overarching responsibility of the GWI-TF is to regain Gulf War Veterans’ confidence in VA’s health care, benefits, and services and reconfirm VA is 100% committed to Veterans of all eras. The GWI-TF began in fall 2009 and is not a static, one-time initiative but will continue to build on its work with annual reports issued every August.

The group’s focus centers on unanswered Gulf War Veterans’ health issues, improving access to benefits, ensuring cutting edge research into treatments, and to make sure Veterans’ concerns are heard and addressed. This includes continuing to solicit Veterans, experts, advocates and stakeholders to share their views to better inform the important work of the GWI-TF. The GWI-TF Report can be found at www.VA.gov.

Disability compensation is a non-taxable monetary benefit paid to Veterans who are disabled as a result of an injury or illness that was incurred or aggravated during active military service.

Last year, VA received more than one million claims for disability compensation and pension. VA provides compensation and pension benefits to over 3.8 million Veterans and beneficiaries.

Currently, the basic monthly rate of compensation ranges from $123 to $2,673 for Veterans without any dependents.

For information about health problems associated with military service in Southwest Asia and Afghanistan, and related VA programs, go to www.publichealth.va.gov/exposures/gulfwar/ and http://www.publichealth.va.gov/exposures/oefoif/index.asp.

For information about how to apply for disability compensation, go to www.va.gov or http://www.publichealth.va.gov/exposures/gulfwar/compensation_benefits.asp.

Monday, September 27, 2010

Blogging about Gulf War illnesses: Sleep Issues

 

Written by Anthony Hardie

(91outcomes.com) – One of the top health complaints of veterans of the 1991 Gulf War has been sleep problems, including unrefreshing sleep.

What is unrefreshing sleep?  Normally, sleep refreshes and rejuvenates the body.  After a normal sleep period, typically between seven and nine hours, we awake and feel new again, ready to take on the new day.  But for us Gulf War veterans, sleep is disturbed and dysfunctional, often in many different ways.

I couldn’t decide which of several areas to focus on for this third article in a fairly personal series on Gulf War illnesses.  However, after waking up at 5 a.m. and realizing I’ve slept for about 27 of the last 30 hours, I thought one on sleep might be well timed. 

In short, his column will attempt to explore sleep dysfunctions, their diagnoses, and potential treatments to help with the sleep symptoms that are so commonly reported among us Gulf War veterans.

MYRIAD OF SLEEP ISSUES

Sleep problems among war veterans are almost a proverb.  Post-Traumatic Stress Disorder (PTSD), with its hypervigilance, excessive watchfulness, depression, anxiety, and dreams of re-experiencing traumatic events, is well known for disturbing sleep.  However, for many Gulf War veterans suffering from Gulf War illnesses, PTSD is not the reason for their sleep disorders and disruption in the majority of cases.  PTSD almost certainly compounds underlying Gulf War Illness-related sleep problems in those who suffer from both GWI and PTSD.

Poor quality sleep can result in increased widespread pain, worsened immune function, headaches, irritability, confusion, forgetfulness, difficulty concentrating, worsened bowel and digestive symptoms, and more.

Not getting proper restful sleep can lead to a vicious feedback cycle as well, with worse sleep leading to worsened symptoms, worsened symptoms resulting in worsened sleep, and so on.  Breaking the cycle by getting better sleep can be the key.

Sleep issues, including some of those discussed below, can also be features of other neurological diseases that are reportedly more common in Gulf War veterans, including MS (multiple sclerosis) and ALS (amyotrophic lateral sclerosis). 

And with the current wars in Iraq and Afghanistan, there has been a growing understanding of the long-term effects of damage to the brain by concussive and blast injuries.  Traumatic, or mild traumatic brain injury (TBI, mTBI) has been called the signature wound of the current wars, but despite being only newly recognized, certainly affected some veterans of previous wars as well, including the 1991 Gulf War.  

PTSD and Sleep.  While PTSD rates among veterans of the 1991 Gulf War are relatively low, especially when compared to PTSD rates from other wars, PTSD still does exist among somewhere around nine percent of veterans of the 1991 Gulf War.  That’s less than half the estimated rate among Vietnam War veterans and less than a third the estimated rate of PTSD among Iraq War veterans.

Among the PTSD-related symptoms of sleep disturbance are difficulties falling and staying asleep.  These are often related to the subtle or not so subtle anxiety surrounding worries or concerns of another night of terrible dreams.  The National Center for PTSD has a good list and description of PTSD-related sleep problems. 

One of the primary symptoms of PTSD is avoidance – avoidance of reminders of the myriad of sights, sounds, smells, tastes, sensations, emotions, and feelings that existed during and around each traumatic event.  Compounding PTSD for war veterans is the reality that there are likely many traumatic events, not just one.  Veterans with PTSD can be plagued for a lifetime with dreams – fully remembered, half-remembered, remembered only for a flash of a moment after violently waking up upset, angry, or even fighting -- in which one or more of the sights, sounds, smells, tastes, sensations, emotions, or feelings related to the many traumas are experienced yet again during sleep. 

The mind can be very creative during sleep, continually inventing new dream scenarios that always end up in the same situation, the same place, or are otherwise related to the original traumas.  Not surprisingly, all of this can lead to a conscious or unconscious avoidance of going to sleep. 

And, once asleep, PTSD symptoms and dreams can severely disrupt sleep, not allowing the body to get into the deep levels of sleep required for the body to feel refreshed upon waking.  My sons tell me they often find me sleeping on the couch with one eye open and one eye closed. 

Sleepwalking can be common among veterans with PTSD as well, as well as physically attacking shadows or other dream remnants across the room or down the hall.  I wonder how many other combat veterans have unintentionally punched or otherwise attacked their bed partner, fully believing them to be the enemy until your fist connects and you wake up, embarrassed, ashamed, and more. 

In one of my more memorable PTSD-related nightmares, I jumped up from my bed to kill an attacker that I fully believed I saw, screaming obscenities at him while chasing him around the corner.  I fully awoke after I ran into a bookshelf and wound up knocking down some glass bottles, stepping on the broken glass, and cutting my feet.  I can only imagine what my poor college roommates thought from their room next door after hearing all the commotion and coming out into the hallway to see bloody footprints leading into the closed bathroom door, behind which I was angrily plucking broken glass from my feet.

Obviously, falling back asleep after night issues like these is not easy, but when you’ve got work or class the next day, you have to get rest, and that can be very difficult.  And for veterans like me who deal with both PTSD and GWI, it is all that more challenging.

“Coming back down” can be very difficult for veterans with PTSD who get into an elevated stated, regardless of whether they got into the elevated sleep from triggers while awake or while asleep.  And I continue to believe that there’s a component of not being able to “come back down” that’s also related to GWI.

I’ve described it like this:  imagine if someone comes up behind you and severely startles you and causes you to “jump.”  Now, hold onto that feeling of how it feels when you’re severely startled, and imagine that you feel that way constantly, day and night, for a couple weeks at a time.  Whether the cause is PTSD, GWI, or both, that’s clearly a recipe for very bad sleep and the slew of negative effects that come from poor sleep.

GWI Brain Damage and Sleep.  Many scientists now believe that a variety of chemical exposures permanently damaged the brain and resulted in long-term dysfunction of the “automatic” parts of the body’s functioning, called the autonomic nervous system.  Among the functions that appear to be left disturbed are breathing, heart rate, sleep, digestion, and more.

This autonomic dysfunction can affect sleep in many ways.  Unusual changes in heart and breathing rates might affect natural sleep cycles.  Digestion, which usually slows down during sleep, might be altered and affect sleep. 

Breathing during sleep can simply stop because of dysfunction in the brain’s controls, the tongue or throat relaxing and collapsing and partially or fully blocking breathing, or a combination of the two.  This cessation of breathing for short periods or until you wake and gasp for air is called apnea.  Not getting enough oxygen, without actually stopping breathing, is called hypopnea.  Apnea caused by brain dysfunction, in which the brain “forgets” to breathe while sleeping, is called central sleep apnea, while apnea caused by anatomical blockage is called obstructive sleep apnea.  Have both at the same time?  That’s called mixed sleep apnea.

Ever wake up gasping for air?  That might just be sleep apnea.  Wake up with headaches, feeling groggy, and find yourself falling asleep during the day?  That might also be sleep apnea.

Respiratory Issues and Sleep.  In the first column in this series, I wrote about the variety of respiratory and sinus issues that affect many Gulf War veterans, including me.  Obviously, untreated or inadequately controlled respiratory issues, respiratory infections, and sinus infections can affect sleep. 

Mucous from sinus infections – which appear to be more common among us Gulf War veterans that other veterans -- may make obstructive sleep apnea more likely, especially if there’s mucous drainage down the throat when sleeping.

G-I issues and Sleep. Gastrointestinal issues can cause worse sleep as well.  From gas and other bowel pain, to chronic diarrhea, to waking in the middle of the night with an intense urge to defecate, symptoms related to irritable bowel syndrome (IBS), Crohn’s disease, and functional bowel disorders can have a negative impact on sleep and lead to the vicious feedback cycle described earlier. 

From personal experience, a subtle and often missed diagnosis for sleep and respiratory issues is Gastro-Esophageal Reflux Disease.  While we’ll cover GERD in more detail in a future column, if you wake up choking, you might be suffering from GERD, with liquid or other stomach contents trickling up your throat and into your airways while you’re sleeping. 

Relaxation or dysfunction of the lower esophageal sphincter, which opens to let food and fluids into the stomach and is supposed to otherwise remain closed, can lead to the most severe GERD symptoms and follow-on issues and could be related to the brain dysfunction believed to be at the root of Gulf War Illness.  In my case, it was so severe that before effective treatment I would wake up regularly choking on stomach acid – not only unpleasant but dangerous on several levels – or clawing at the air for oxygen. 

Controlling G-I symptoms and getting good quality sleep are key.  We’ll discuss G-I issues in more detail in a later column about Gulf War illnesses.

Night terrors.  There’s still a lot of debate about the nature of night terrors – waking up feeling terrified or severely agitated but with no memory of a bad dream.  They could be related to PTSD, or severe GERD, or apneas and not getting enough oxygen.   Some research even suggest link between night terrors and hypoglycemia (low blood sugar).  What is clear, however, is that night terrors severely disrupt sleep and can make it difficult or impossible to go back to sleep.  And, they can be upsetting for your bed partner as well, particularly if you wake up screaming, shouting, or swinging. 

SOLUTIONS FOR SLEEP ISSUES

Clearly there are many potential causes for sleep issues in Gulf War veterans.  The good news is that there are quite a number of possible treatments for sleep issues.  Used in combination, they can genuinely improve quality of life.  I know for me that they have.  Currently, there’s no “cure” for Gulf War illnesses and scientific understanding is only just beginning to get at the root of the issues, but I hope that some or several of the following are as helpful to you as they have been for me.

Practice Good Sleep Hygiene.   Breaking bad sleep habits not just learned but ingrained in the military can take a lot of time and effort.  Those include sleeping not at a regular time but whenever you can; pgulf13.jpg image by jpeters_photosiecing together sleep throughout a 24-hour or longer period; learning to sleep with one eye (or ear) open to remain watchful for the enemy; never getting a full night’s sleep; waking up for guard duty or other night-time tasks, then having to go back to sleep for an hour, two, or three afterwards; overuse of caffeine and other stimulants; performing all daily tasks  like eating, reading, watching a DVD, cleaning your weapon on the same cot, bunk, mat, or vehicle where you sleep because it’s the only home you have.  But in order to correct these and other issues, first, you need to know what to do.

Sleep hygiene means controlling all the elements and aspects of your sleep environment, your sleep, and how they interrelate.  Good sleep hygiene is also easy to do and doesn’t require any special equipment or training.  After years of personal experienced, I believe that practicing good sleep hygiene should be first and foremost in any effort to improve sleep quality. 

Here are some good recommendations from the National Sleep Foundation (http://www.sleepfoundation.org/article/ask-the-expert/sleep-hygiene) and the American Academy of Sleep Medicine (http://www.sleepeducation.com/Hygiene.aspx). 

See a sleep medicine professional.  I’ve found that a lot of Gulf War veterans have no idea that sleep medicine specialists exist, let alone that they are common within the VA medical system.  Get a referral to one from your primary care physician and see what they can do to help.

Treat Pain.  Effectively treating pain is also critically important in order to be able to fall and remain asleep.  Recognize that some pain medications may provide sleep, but not necessarily provide restful or refreshing sleep.  Studies have shown, however, that most paradoxically, however, getting good quality sleep may actually help relieve some pain, particularly in veterans with fibromyalgia and chronic widespread pain.  My own experience has proven this to be true as well, at least for me, so maybe getting better quality sleep will work for you, too in helping manage chronic widespread pain. 

Treat PTSD, anxiety, and depression.  All of these can have severe, negative effects on sleep, including falling and staying asleep, feeling well rested, or even sleeping too much and waking up feeling awful.  Some medications for treating these conditions can also affect sleep, either positively or negatively.  Be sure to talk candidly with your health care providers to be sure you’re getting just the right medications, doses, and in the right combinations.

Treat other health issues.  It is of key importance to treat other health symptoms, including respiratory, sinus, gastro-intestinal, and other diseases, illnesses, and symptoms.    As mentioned above, and will be discussed in a future column on G-I issues, untreated or poorly controlled GERD can lead to severe sleep disruption and damage to the lungs, airways, esophagus, and more.

Exercise.  Getting good exercise is an important component to getting good quality sleep.  However, for Gulf War veterans like me, exercise helps reduce chronic widespread pain but worsens chronic fatigue, so exercise and rest become more of a delicate balancing act.

Mindfulness, Muscle Relaxation, and Deep Breathing Training .   All of these used together can have a significant positive effect on getting to sleep and getting back to sleep after awaking after whatever kind of sleep episode.  I learned about deep breathing exercises, deep relaxation, and mindfulness from a health psychologist to which the VA sent me (contracted via fee basis) for pain control and coping with the awfulness of new total disability.  Here’s an excellent write-up about these: (http://www.helpguide.org/mental/stress_relief_meditation_yoga_relaxation.htm).  While I don’t yet practice Yoga or Tai Chi, there’s a lot of evidence that suggests these are very good for improving sleep and controlling pain as well. 

Take Appropriate Sleep Medications.  After trying all of the above, if you’re a Gulf War veteran like me, you might still have serious sleep issues.  Thankfully, there are a number of medications that can help.

In general, I have found that over the counter sleeping pills make me feel much worse after only a night or two.  While they can certainly help you to fall asleep, they don’t always provide the best quality sleep, which can lead to the negative sleep cycle discussed earlier, making pain and other chronic symptoms worse.  Antihistamines like Benadryl can be used in a quick fix to fall asleep, but can lead to next day “hangovers” of grogginess and other symptoms.

Your doctor might consider prescribing low-dose anti-anxiety medications like Xanax or Valium, thought they should be used very carefully and exactly as prescribed -- using these on a daily basis can lead to tolerance and worse.  Anti-seizure and anti-depressants can also have effects on sleep that are desirable for people with sleep disorders and symptoms. 

Seroquel, an anti-psychotic medication prescribed for a host of “off-label” uses is often given for sleep issues.  For me,  at low doses (50 mg) it’s definitely my all time favorite because it allows me to get good quality, restful sleep and even to dream again after years of dreamless, fitful sleep. 

While they might not be able to cure you, the Sleep or Mental Health clinics can help with prescribing medications to help you fall asleep, stay asleep, and get better quality, restorative, restful sleep. 

CPAP.  A machine to help in breathing while sleeping, called a CPAP (continuous positive airway pressure), has been found to help a lot with obstructive and mixed sleep apnea, fibromyalgia, and some neuromuscular diseases.  The CPAP consists of a base unit plugged into the wall with a breathing tube attached.  The CPAP blows air at a constant pressure, helping to ensure continued breathing during periods of breathing stoppage (apneas or hypopneas).

A recent study of Gulf War veterans suffering from chronic multi-symptom illness suggests that the use of a CPAP machine can help alleviate many symptoms, including not only feeling unrefreshed after sleep, but also chronic widespread pain, muscle and joint pain and weakness, irritable bowel issues, debilitating fatigue, and immune dysfunction and related chronic infections.

And, there have been enough studies of the use of a CPAP to help relieve the chronic widespread pain of fibromyalgia that VA will now prescribe a CPAP machine for those diagnosed with fibromyalgia, a presumptive condition for service-connection for Gulf War veterans. 

Let’s be candid:  trying to fall and stay asleep with a plastic mask or piece in your nose or over your mouth and nose (depending upon the model your doctor provides you) is challenging for healthy people.  Hearing the hum of the machine and hearing your breathing louder and more raspy than normal are not easy to get used to either.  Add in abnormal difficulties in falling and/or staying asleep, and getting used to wearing the breathing portion of the CPAP is not going to be easy. 

I’ve got a very nice electronic CPAP provided by my VA sleep clinic.  It even integrates distilled water (you have to fill it manually) to help prevent the mouth, throat and nose dryness associated with older CPAP models.  I’ll be the first to admit that it’s just very difficult to adapt to using it, but I’ll keep trying and encourage you to do the same because the science suggests that it really can help with many of our worse symptoms.

As one sleep apnea blogger puts it, think of it as snorkeling while you sleep!

SUMMARY

At the end of the day, getting good quality sleep that is restorative, refreshing, and of sufficient duration and quality can be very difficult.  However, starting with improved sleep hygiene, consulting with a sleep medicine professional, and controlling pain and other symptoms are all critically important components. 

Without adequate, good quality sleep, a negative downward spiral can result that makes everything much worse, particularly chronic pain.  With worse physical and mental health symptoms, even worse sleep results, and the down the negative feedback spiral goes.

Lifestyle changes might even be required, like using a CPAP. But remember, lifestyle and medication changes are just a small price to pay for still being alive after our combat experiences.  To be candid, implementing them properly may not result in us returning to 100 percent functionality, but can result in having a decent enough quality of life to enjoy our loved ones and to continue to contribute or otherwise find enjoyment in still living. 

Good luck, and God bless.

-Anthony

Friday, September 24, 2010

New Initiative Seeks to Educate Consumers, Providers about Safe Use of Pain Therapies


Written by the American Pain Foundation

(APF.org) - The American Pain Foundation (APF) is proud to launch PainSAFE™ (Pain Safety & Access For Everyone), a new initiative that educates people with pain and health care professionals about the appropriate and safe use of pain management therapies in an effort to reduce risk and improve access to quality pain care. 

What is PainSAFE?

PainSAFE is a web-based initiative that offers up-to-date information, practical resources and tools to inform consumers about pain treatment options and their safe use. It also includes a central hub of evidence-based information and practice-based tools for health care providers. PainSAFE was created with input from expert advisors, people living with pain and allied organizations to address safety related to all pain management therapies. The content of PainSAFE will continue to evolve and adapt as scientific and policy research uncovers new findings about pain treatment and safety and the real-world effects of recommended approaches.

How can PainSAFE help you?

Patient safety is a pressing health care challenge that affects millions of people. Pain management therapies provide significant benefits to people with pain but no treatment option – including the decision not to treat pain – is without risk.

PainSAFE can empower and educate both consumers and health care providers about the safe use of pain management therapies, thereby helping to reduce risk and improve access to quality pain care.

Learn more about PainSAFE

Visit PainSAFE at www.painsafe.org to explore the information and resources available to you. Spread the word. Share this with your family members, friends and your pain management team members.

Tuesday, September 21, 2010

Blogging About Gulf War Illnesses: Neurological Issues and Treatments

Some of the best recent science has shown us that there may be common causes underlying the complex symptoms of Gulf War veterans’ illnesses, and those causes very likely involve the brain and neurological system.

Among the scientific studies that I have found to be particularly compelling have been those that suggest that various Gulf War exposures led to subtle brain and nervous system damage in Gulf War veterans, which, in turn, has led to dysfunctions of the autonomic nervous system, that controls such “automatic” bodily functions as the heart rate, breathing, digestion, salivation, perspiration, sexual functioning, and sleep regulation.

In short, many scientists now believe that Gulf War Illness is its own separately diagnosable condition, distinct from MS and lupus and even from nearby cousins fibromyalgia, chronic fatigue syndrome, and irritable bowel syndrome. Others still disagree. However, what’s important is that many scientists have found neurological symptoms in ill Gulf War veterans than can be treated and even if not completely reversed, at least mediated and made more bearable.

Recognizing Gulf War Illness as a separate and distinct neurological condition, caused by chemical damage to the brain and resulting in diverse neurological, autonomic nervous system, and immunological symptoms, is by far the most plausible and most comprehensive explanation I have seen in all the years I’ve been active on Gulf War illness issues. 

This article is divided into four parts after this introduction, including the probable damage caused by certain Gulf War exposures, neurological tests and symptoms, what works, and what to avoid.

Because this article is already so long, I plan to cover sleep, stress management, deep breathing, digestion and gut issues later in separate columns.  Your comments below this article are always welcome, particularly those about your own experiences of what works and what doesn’t.

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Part 1: Acetylcholine, Gulf War Exposures, and Brain Damage. I have found it to be of particular interest and plausibility in these theories that a brain and nervous system chemical called acetylcholine, a primary transmitter of nerve impulses in the autonomic nervous system, was and continues to be affected by one or more common Gulf War exposures.

Remember the little white pills so many of us Gulf War veterans took after the war began, the ones that we were told were experimental and unapproved by the FDA but which we were required to take anyway? Those Pyridostigmine Bromide (PB) pills we Gulf War veterans took were sometimes also called Nerve Agent Protective Pills, or NAPP’s. The primary purpose of constantly taking PB during the Gulf War was to disrupt the production of acetylcholine and improve our chances of survival after a nerve agent attack when used in combination with our 2-PAM chloride and atropine injectors that we carried everywhere as part of our basic uniform, right along with our protective gas masks.

However, without even discussing the long-term effects, taking the PB pills had immediate negative effects on many of us, and so much so that we remember them 20 years later. In my own hastily unit of 35 or so guys that constituted our hastily pulled together liaison team, roughly two-thirds or so of us showed or talked about negative side effects we were having from the PB pills while we were taking them, which we were told would mimic mild effects of nerve agent poisoning and which they did. Among those effects were: Runny nose; Watery eyes; vision changes; drooling and excessive sweating; cough; chest tightness; more rapid breathing; diarrhea; confusion; drowsiness and fatigue; weakness; headache; nausea, vomiting, and abdominal pain. Some of us had all the symptoms, some only a few, some were affected badly with substantial weight loss and being laid up on bed rest while others were affected only a little.

Meanwhile, a number of important scientific studies since the Gulf War have helped unravel the short- and long-term effects of PB pills, both alone and when taken in combination with being exposed to the military-strength pesticides that were so common among Gulf War troops. Those pesticides we Gulf War troops used as protection against sand flies, mosquitoes, and other biting insects, included permethrin, which was supposed to be sprayed on our uniforms to saturate them with insecticide but which we sometimes sprayed right onto our bodies as wells as our tents, sleeping bags, mosquito netting, and in our vehicles. It also included DEET, a commonly used insect repellant contained in “Off” insect sprays but which we Gulf War troops used in incredibly high concentrations all the time. Recent research has shown DEET to be an inhibitor of the key brain chemical acetylcholinesterase even on its own.

And, at least one scientific study has shown that while PB pills might improve survivability after an attack using Soman, one of the more common chemical warfare agents in the Gulf War era Iraqi arsenal, the use of PB actually heightens the negative health effects of Sarin, another common Iraqi chemical warfare agent to which an estimated 100,000 U.S. troops were exposed at low levels following the post-war demolition of chemical and other munitions at an Iraqi weapons storage depot at Khamisiyah, Iraq in March 1991. Soman, Sarin, and a close cousin of Sarin called Cyclosarin all also negatively impact the brain and nervous system, including affecting the production and reception of acetylcholine in the autonomic nervous system.

What is also significant is the result of studies that have shown that while PB does not normally cross the brain-blood barrier, stress can allow it to cross over into the brain with short- and long-term effects that are only in the early stages of being discovered.

To show how seriously many in the scientific research world are now taking this PB and PB-pesticide connection to Gulf War veterans’ illnesses, a 2008 U.S. government report by the Congressionally-chartered Research Advisory Committee on Gulf War Veterans’ Illnesses shook the scientific world when it identified PB-pesticides as the leading probable cause for most Gulf War veterans’ chronic multi-symptom illness – though the report did not rule out a number of other hazardous exposures as having caused other conditions prevalent or potentially prevalent among Gulf War veterans.  The panel is composed of some of the top scientists in their fields from the U.S. and UK, including a former elected head of the American Association for the Advancement of Science, the head of neuro-toxicology for the U.S. Centers for Disease Control (CDC), the head of the UK’s center for chemical warfare research, and many others.   In short, these are not scientific lightweights, off-beats, or self-serving quacks by any stretch of the imagination -- which have all too often been the scourge of the Gulf War veteran community.  The collective opinion of these leading scientists, rooted in countless scientific studies, represented a true and major breakthrough for Gulf War veterans suffering from Gulf War Illness. 

Of interest to Gulf War era troops who did not deploy, these highly concentrated pesticides have more recently been shown to be dangerous were used commonly throughout the military at the time. This fact might help explain why some non-deployed Gulf War ere troops report long-term symptoms similar to some Gulf War veterans.

The damage caused by these acetylcholinesterase inhibiting agents is only just beginning to be understood by science. I’m most encouraged by many of the scientists involved who suggest that this new understanding may very well lead to treatments that might help.

 

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Part 2: Neurological tests and Symptoms. Meanwhile, here are some of the neurological effects I’ve experienced since the Gulf War, whatever the cause, that are common to many of us Gulf War veterans.

· Chronic, debilitating fatigue. This was one of the earliest symptoms, which began while I was still in the Gulf and was first taking the PB pills. However, we had a lot of exposures during the Gulf so accurately attributing the overwhelming fatigue to any one or any set of them is difficult. Chronic Fatigue Syndrome (CFS) is another presumptive condition for Gulf War veterans. Like so many other Gulf War veterans, the fatigue is overwhelming to the point of being all-encompassing and is impossible to overcome. Fatigue is difficult to measure, but there are a number of fatigue scales that can be used.  Some scientists and medical doctors believe that the chronic, debilitating fatigue in Gulf War Illness is separate and distinct from CFS, and a number of current studies will try to tease that distinction out as part of their various aims.  And in the last year, a virus called XMRV has been identified in people with CFS which might be the cause of their chronic fatigue symptoms.  If any of this turns out to be true, then treatment for Gulf War veterans might be  the same or different than for those with CFS. 

· Chronic muscle and joint weakness. This has been getting progressively worse over time. After the Gulf War, even though I was only in my early- to mid-20’s, I began experiencing my knees and legs just giving out. Muscle and joint weakness are commonly reported symptom among Gulf War veterans with chronic multi-symptom illness, as well as in veterans in general, and this is one area that’s harder to tease out from the long-term symptoms of excessive wear and tear on our joints and muscles from our military experiences.   Over time, I’ve had more and more difficulty with walking, a commonly reported neurological or arthritis-based complaint among many Gulf War veterans.

· Chronic widespread pain. In many Gulf War veterans, our chronic widespread pain has been given the diagnosis of Fibromyalgia, which is a presumptive condition for service-connection for us Gulf War veterans. For me, this is in the muscles, tendons, joints, and spine. Fibromyalgia has traditionally been diagnosed through a pressure-point diagnosis system that is still being used by the VA in its diagnostic tests for determining service-connection. However, a newer system is being used in some areas that involves a pain index along with measuring other fibromyalgia syndrome symptoms like fatigue, cognitive symptoms, and psychological symptoms.   

Like with CFS, some scientists and medical doctors believe that the chronic widespread pain in Gulf War Illness is separate and distinct from fibromyalgia, and a number of current studies will try to tease that distinction out as part of their various aims.  If this is true, then treatment for Gulf War veterans’ chronic widespread pain might be different than for those with fibromyalgia.  Time will tell in these scientific debates.

· Paresthesias/Dysthesias. These classic neurological symptoms involve unpleasant, painful, or other highly unnatural-feeling sensations in the skin and various parts of the body. For me, they range from buzzing and unpleasant tingly/buzzing feelings, feelings of vibration, pinching and needle-poking symptoms, to small, repeated twitching. At its worst, they feel like deep burning hot, freezing cold, and a feeling of the affected area being unpleasantly wet – all impossibly at the same time.

While other ill Gulf War veterans have told me about getting these in virtually every part of the body, for me, my Paresthesias are most often in my feet and legs.  In my legs, it starts off as tingling, buzzing, and twitching that becomes increasingly painful.  I also often get aching feet that quickly progresses to burning and feeling like I’m stepping on hundreds of sharp nail points. I often get paresthesias up and down my spine and neck, which begin as strong tingling and progress to pain, sometimes they even go up over the top of my head. One of the strangest feelings is when I get these inside the right side of my abdomen, where it feels exactly like my cell phone is vibrating, only it goes on for minutes or hours.   These sensations feel very abnormal, and are often very difficult to describe.

Some Gulf War veterans have told me about getting these neurological symptoms even in their face and eyes. In my case, my doctors attribute these classic neurological symptoms to fibromyalgia and Gulf War Illness, though they’re also common symptoms in Multiple Sclerosis (MS), Lupus, neurological damage caused by Diabetes, and a host of other neurological diseases. Very little study has been devoted to Paresthesias/dysthesias in Gulf War veterans, though my own experience suggests that this is more of a newly emerging issue in us Gulf War veterans and part of the progression of the underlying issues, and hopefully we’ll see more treatment-focused research aimed in this direction in the next year or two.

· Neuropathies. These are nerve-related pain. For me, I get them most in my legs and feet, sometimes with Paresthesias/dysthesias, sometimes alone, but I know other Gulf War veterans that get them in their hands, arms, face, and elsewhere. Neuropathy is common in MS, Lupus, Diabetes, and many other neurological diseases.   My father is a diabetic who gets neuropathies in his legs that are so severe he cannot sleep, and this is also reportedly common among Gulf War veterans.

· Comprehensive neurological testing. I found it very important to have a complete battery of comprehensive neurological testing to rule out other neurological diseases. These included an Electromyogram and nerve-conduction studies (EMG/NCS), a battery of in-office basic neurological tests, an MRI of the brain, an EEG, neuropsychiatric tests to measure memory, cognitive abilities, mood and emotional dysfunctions, and many others. Read more these and neurological testing here: http://www.ninds.nih.gov/disorders/misc/diagnostic_tests.htm

· Small Fiber Peripheral Neuropathy (SFPN).  Many of the standard neurological tests are looking at neurological symptoms and conditions in the most broad-brush sort of way.  I know a lot of Gulf War veterans who have grown upset over the years because a neurologist has not been able to diagnose or find a cause for the apparently neurological symptoms they’re reporting.  A new study is currently focusing on the possibility of a condition called Small Fiber Peripheral Neuropathy in Gulf War veterans with Gulf War Illness symptoms, which cannot be diagnosed by the older, more traditional neurological tests like EMG’s and NCS’s because they’re simply not sophisticated enough.   If SFPN is found to be an issue, this could quickly lead to new treatment possibilities for Gulf War veterans.   Typical symptoms include burning feet and numb toes.

· Vision changes. While I have only had limited vision symptoms, many of my ill Gulf War veteran friends report eye pain, double vision, blurred vision, and other color and vision changes that wax and wane. Some of these Gulf War veterans have been diagnosed with MS, while others have not.

· Dizziness. This is a commonly reported symptom among Gulf War veterans. It’s also very hard to diagnose or measure. This is also a common symptom in veterans with mild and other Traumatic Brain Injury (TBI) caused by head injuries, blast waves, and other concussions.  It’s important for a good doctor to do a thorough review, including a detailed medical history that includes when the dizziness began, because dizziness can be a symptom with many possible causes, some of them life-threatening.  Most important is whether the dizziness waxes and wanes, stays the same, or has been getting progressively worse with no relief. 

· Heat Intolerance.   Like people with MS, I’m a Gulf War veteran without MS who has developed heat intolerance.  Just like people with MS, heat – including from a hot day, a hot shower or bath, a hot tub or sauna, or even a hot kitchen  – makes my other symptoms flare almost instantly, including fatigue, weakness, dizziness, cognitive issues and visual symptoms.  

· Headaches. I’ve been fortunate to not have headaches, a common symptom reported by many Gulf War veterans, since my sinus surgeries in the mid-1990s. I sometimes wonder how many of my fellow Gulf War veterans’ headaches could be attributed to untreated and possibly unknown sinus problems as well. At least one Gulf War Illness researcher continues to look at migraines in Gulf War veterans.

· Brain/Spinal Cord lesions. Many Gulf War veterans have told me about having had lesions found on their brain and/or spinal cord after an MRI. Some are diagnosed with MS, while others are not. Some have told me that their doctors call the lesions atypical for MS and are unexplained. There has been a good bit of discussion among ill Gulf War veterans about deterioration of the myelin sheath surrounding nerves as a possible cause for some of Gulf War veterans’ neurological symptoms, similar to the dramatic demyelination in MS.

· CSF changes. Certain changes in the cerebral-spinal fluid (CSF) that surrounds the brain and spinal cord are used to confirm the diagnosis of MS and other neurological diseases. A sample of CSF is drawn via a spinal tap. Many studies have found an increase of a particular chemical believe to be related to pain sensation, called Substance P, in the CSF of people with Fibromyalgia.

For me, I have unusually high protein levels in my CSF, which is consistent with my neurological symptoms, but doesn’t really help to guide any specific form of treatment, at least not yet, anyways. A study currently ongoing at Georgetown University in Washington, DC may help shed more light on abnormalities in ill Gulf War veterans’ CSF and has the potential of helping to provide another objective diagnostic criteria that might also one day be used to measure the severity or progression of the underlying issues.

· Blood Abnormalities. Some neurological diseases show certain abnormalities that can be identified by specific testing of blood samples. Neurology and Immunology can both help in these areas, though getting more exotic testing done can be difficult to impossible within the VA system due to budget and formulary constraints.

· Cognitive issues. These were some of the earliest symptoms reported by ill Gulf War veterans, including memory loss, confusion, excessive or even debilitating forgetfulness, decreased ability to learn or retain information, difficulties with words and speaking, new onset difficulties with reading, and other related cognitive issues. Like many Gulf War veterans, I’ve experienced many of these, too. These issues are also common symptoms of PTSD, a common war trauma disorder, and mild and other Traumatic Brain Injury (TBI and mTBI).

· Mood Issues. Symptoms like depression and anxiety are common in many debilitating diseases, but especially in brain and neurological disorders. Mood swings, excessive irritability, and mental lethargy can also be symptoms. Many of these are also symptoms in PTSD, which affects many veterans, and in TBI/mTBI, another form of brain injury. Effective treatment of these is critical, though working with a doctor to find medications that work and also have tolerable side effects can be a challenge spanning several years.

While some veterans I know are concerned about the supposed stigma of being seen or treated for these issues, it should come as no surprise to anyone thatp people with neurological damage of any kind are at increased risk of also having mood symptoms, since most mood controls reside in the brain and neurological system that in many Gulf War veterans is likely damaged.

· Sexual Function Issues.  Much of the body’s sexual functioning is controlled by the parts of the brain believed to be damaged in Gulf War veterans.  Sexual function can also be negatively impacted by other forms of brain injury, and by PTSD, depression, and anxiety, all of which are prevalent in military veterans.   Issues related to the several aspects of sexual function are an important but little discussed aspect of Gulf War Illness, the impact of which obviously differs between male and female Gulf War veterans.   For many Gulf War veterans and their families, these symptoms have had a profound impact on conception, and childbearing, relationship health, and quality of life.  In the early years after the Gulf War, “burning semen syndrome” and birth defects were two areas that were widely discussed and derided in the stress-bent military establishment, but there was little serious scientific or medical attention given to these issues.   Despite the highly private and sensitive nature of these issues, perhaps the future will hold more focused research targeted  to these areas.

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Part 3: Neurological Symptoms -- Things that help. Here are some of the things I do that seem to help my own neurological symptoms.

· Sleep. Getting good quality sleep for Gulf War veterans, particularly for those of us also suffering from PTSD, can be nearly impossible, and I intend to dedicate a column just on sleep alone. In summary, however, a combination of sleep hygiene techniques, deep breathing exercises discussed below, stress management (also to be the subject of another column), sleep medications, and control of sleep apnea symptoms are all key.

· Medications. There are many medication choices for neurological pain and neurological symptoms like Paresthesias/dysthesias, neuropathies, and other neurological symptoms. These range from drugs like Lyrica, which is specifically approved to fibromyalgia pain and in my experience really does help relieve the worst Paresthesias, to narcotics and opiods like oxycodone, oxycontin, vicodin and other medication specifically for pain.

As surprising as what it might seem, some anti-depressants, anti-seizure medication used in conditions like epilepsy, muscle relaxants, and anti-anxiety mediations can be helpful in treating the wide array of neurological symptoms and underlying issues.

While I have never tried Amitriptyline (Elavil) this is another commonly prescribed first-line drug for neuropathic pain.  I’ve heard mixed reports from other Gulf War veterans and fibromyalgia sufferers, helping some and not helping others.  It’s often necessary for VA doctors to try prescribing these sorts of drugs first before progressing to more expensive drugs like Lyrica if the first- and second-line drugs don’t work. 

Gabapentin (Neurontin) is an anti-seizure drug that is often prescribed for neuropathic pain, especially if amytriptaline isn’t effective.  I found it did not relieve my paresthesias, though it did help with the neuropathies. 

Lyrica (Pregabalin) is the general favorite of four drugs now FDA-approved for the treatment of fibromyalgia.    While Gabapentin works on the brain’s GABA-receptors, Pregabalin, like the names sounds, works at a level prior to that.   

Other FDA-approved drugs for fibromyalgia include Cymbalta (Duloxetine) and Savella (milnacipran), two drugs which cannot be taken in combination with some other anti-depressant type medications.   Cymbalta is also FDA-approved for treating depression and diabetic peripheral neuropathy. 

I’ve also found that analgesics like prescription strength Ibuprofen (Motrin) helps with some of the muscle pain (but not the nerve pain). For me, I have found a combination of these helpful, though I personally try to avoid narcotics and opioids. However, that’s a very personal choice made based on my own weighing of the Faustian trade-offs of leaving the symptoms untreated versus experiencing the unavoidable side-effects of those types of medications. Many other Gulf War veterans need to rely heavily on these kinds of pain medications. In fact, pretty much all neurological drugs are going to have side-effects, some of which may be worse than the symptom you’re trying to have treated.

I have found neurology and rheumatology to be most helpful in diagnosing and treating my own pain, Paresthesias/dysthesias, and other neurological issues.

Here’s a really good PowerPoint overview of neurological drugs: http://cstl-hhs.semo.edu/ham/ns270-01/protected/NS%20270%20Neurologic%20Drugs.ppt

Modafanil (Provigil) is commonly prescribed for fatigue issues.  I don’t like it, just like I don’t like caffeine, because they both make me work past my fatigue limits and lead to sever flare-ups in my pain and other symptoms,  but others’ experiences may be different, of course. 

· Treatments for cognitive symptoms vary from psychological adaptation and learning to do things differently to sort of “bypass” the damaged areas of the brain, to medications, neutraceuticals and supplements, to strategies and tools to help with memory like a smart phone (iPhone, Blackberry, etc.) or personal digital assistant (PDA, like Palm Pilots, iPods, iPads, etc.). It’s important to learn that no matter what the cause is for brain damage, we’re very resilient and can do a lot to adapt. While it’s hard, we can learn new ways of doing things to help us get by, much like an amputee gets by with a new prosthetic limb.

I rely on my smart phone for sounding off to remind me of things I need to do, and my iPad for my calendar and daybook that also beeps and makes other sounds to let me know of upcoming appointments and other scheduled activities. Having a family member keep track of appointments is also helpful, and something that we do in my family so I don’t miss them.

· Cognitive support. In addition to reading and writing to keep my mind active, I really like Ginkgo Biloba, an over the counter neutraceutical herbal supplement that seems to have only one effect – improving my mental clarity – with no apparent side effects. I take two standard capsules every morning as part of my daily regimen, and while the improvement is subtle, it is noticeable. I order mine online at less than $3/bottle: http://www.swansonvitamins.com/mobile/itemdetail/SW1106.html.

· Treatment for Mood Issues. Common symptoms in neurological and other diseases, like depression and anxiety, mood swings, excessive irritability, and mental lethargy, need to be treated. Effective treatment of these is critical, though working with a doctor to find medications that work and also have tolerable side effects can be a challenge spanning several years. There is no shame in getting this kind of treatment, any more than there is any shame in getting pain medication for pain, heart medication for heart disease, or inhalers for lung and sinus disease. And, as I already noted above, many of these treatments are also known to affect pain receptors in the brain and are specifically prescribed to reduce pain and other neurological symptoms, meaning multiple benefits in the same treatment!  

For example, Celexa (Citalopram) has been shown to be effective in relieving symptoms of depression, PTSD, and is also prescribed off-label for chronic widespread pain.   I’ve had good success with it. 

· Exercise, even moderate, helps the chronic widespread pain. However, for me and many other Gulf War veterans, this is sort of a Catch-22 because the exercise also often dramatically worsens the debilitating fatigue. A powerful recent study showed that Tai Chi helps with managing chronic fibromyalgia pain.

· Walking Support.  A lot of Gulf War veterans I know have difficultly with mobility.  Some have been diagnosed with MS, while most of the rest of us have not.  While it can be a bit of a pride issue, using the cane prescribed by my doctor really does help with mobility and in countering the gradually progressing weakness in my legs and back.   Add in the degenerative arthritic issues in my knees and spinal column, and having walking support is critical.  Using a shopping cart for support when in large stores is also very helpful.   While I spent the better part of a year at Walter Reed Army Medical Center recovering from a non-combat military injury leg surgery, I learned that it’s most effective to use a cane on the opposite side of the weakest one, and having the can high enough so you can stand straight up without leaning are both key. 

· Deep Breathing. I’ll do a separate article on this one, but if you want to get a head starte, here’s a good article on deep breathing exercises: http://www.drweil.com/drw/u/ART00521/three-breathing-exercises.html

· Stress Management. Just the word “stress” has become a trigger point and dirty word for many Gulf War veterans because of the federal government’s insistence over many of the early years after the Gulf War that “all” that was wrong with Gulf War veterans was “stress” -- and that we just needed to forget about it, get over it, and get past it. (One VA doctor, my local VA Gulf War specialist, actually told me and other Gulf War veterans those words in 1996). However, managing stress and our reactions to it is a key part of dealing with any serious and debilitating disease like Gulf War Illness, fibromyalgia, chronic fatigue syndrome, MS, and so on. I plan a separate column on stress management for ill Gulf War veterans, including its importance and some “how-to’s”.

· Laying flat on your back. Strange as it may sound, this can really help with quelling the worst of the symptoms. Sometimes, even sitting up can make symptoms worse. Laying flat on my back, or laying flat with my knees up, really seems to help. I’ve found the real versatility of a laptop, and in fact, I’m writing this from my laptop while flat on my back. I don’t know whether this helps anyone else, or if anyone else can feel a difference from sitting up versus laying down, but it works for me so maybe it works for someone else, too.

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Part 4: Neurological Symptoms and Things to avoid. Here are some of the things I avoid in order to not make my neurological symptoms worse, or keep the worst of them at bay.

  • · Head and Neck Injuries.   I’ve found that many of my symptoms have dramatically worsened each time I’ve had an additional head or neck injury.  While probably no one really tries to get a head or neck injury, avoiding situations that put you at higher risk might be a good choice. 
  • · Avoid certain chemicals. Like many Gulf War veterans, I became highly chemically sensitive while still in the Gulf. From paints and paint thinners to pesticides, detergents, and almost any sort of chemical fume, I’ve learned to avoid them to prevent immediate worsening of my symptoms. I’m interested in what others have learned to avoid – put it as a comment below!
  • · Avoid certain food additives. I’ve found that caffeine makes me worse even in very small amounts (a few sips of coffee or a caffeinated soda), which like for everyone first boosts my energy, but then crashing down into a serious and debilitating fatigue episode that can last as long as 24 hours or more. I also avoid aspartame (Nutrasweet), found in diet sodas, powdered diet drinks, chewing gum, and many other products, since it has made me feel unpleasantly light-headed in even very small quantities. By paying attention to how I feel after I consume anything, this helps.
  • · Overexertion. For me, balancing has been key. A balance between a little moderate exercise (a walk of a few blocks, walking while doing some light shopping) and getting a LOT of rest is critical.
  • · Stress. I can’t say enough about how important it has been, especially in more recent years, to keep all stress away to keep the worst of the symptoms at bay. This includes both physical strain and mental or emotional stress.
  • · Driving. I have found that the constant, subtle jostling while driving or riding in a car makes my neurological symptoms worse. Flying isn’t quite as bad. In addition to becoming highly fatigue, sometimes even short, in-town driving/riding can bring on the worst of the neurological symptoms.