HopeSprings

"Gulf War illness, which afflicts an estimated 200,000 military veterans, results from extensive damage to the autonomic nervous system, according to a study published Monday by Archives of Neurology, a publication of The Journal of the American Medical Association." I'm really interested in knowing what specifically he found wrong with the autonomic nervous system in these veterans. He says "extensive damage" - what does that mean and how was it measured? Alex- the links you sent don't work for me. Thanks for trying though.

This is interesting about Gulf War illness and sounds familiar... I'd like to locate the study referred to in the first paragraph. I can't seem to find it. Can anyone help? Thanks. ------------------------------------------------------------------------------------------------------------------------------- http://www.dallasnew...erve-damage.ece Dallas researcher’s team finds Gulf War illness stems from nerve damage Gulf War illness, which afflicts an estimated 200,000 military veterans, results from extensive damage to the autonomic nervous system, according to a study published Monday by Archives of Neurology, a publication of The Journal of the American Medical Association. Dr. Robert Haley, an epidemiologist at UT Southwestern Medical Center in Dallas, said he and a team of researchers studied 66 chronically ill veterans and 34 healthy veterans who, together, constitute a scientific representation of the 700,000 veterans who served during the first Gulf War in 1990 and 1991. Their findings lend scientific weight to the theory that the illness, also called Gulf War syndrome, is not merely a psychological reaction to combat, but a physical disorder involving nerve damage that affects breathing, heart rate, sexual function, perspiration and other body functions. “Many of these veterans have been told that there is nothing wrong with them,” Haley said Monday in an interview. “Our hope is that the physicians treating our veterans will read this study and recognize the symptoms, and that this will lead to better treatments.” Haley has been studying Gulf War veterans for more than 20 years. He and other medical experts have repeatedly said they believe Gulf War syndrome was caused by exposure to pesticides and other chemicals in the Persian Gulf. Other researchers have speculated that pills containing pyridostigmine bromide, an anti-nerve gas agent, could have caused illness. But the new study does not address the causes. “These guys don’t care what caused it,” Haley said. “They just want to know what it is.” When U.S. military personnel returned home after the Gulf War, many streamed into veterans hospitals complaining of memory loss, cloudy thinking, breathing difficulty, sleep problems and excessive perspiration. Many physicians were puzzled and assigned a diagnosis of post-traumatic stress disorder, or PTSD, which allowed the veterans to collect benefits for a service-related illness. But veteran groups and their advocates resented the implication that it was all in the soldiers’ heads and kept fighting to get funding for Haley and other researchers to search for answers. Paul Sullivan, a Gulf War veteran who heads Veterans for Common Sense in Austin, said the next step is to secure federal funding for research on drugs that might help afflicted veterans. He singled out U.S. Sen. Kay Bailey Hutchison, R-Texas, and Dallas billionaire Ross Perot for supporting Haley’s research at UT Southwestern. “The scientific evidence is rock solid,” Sullivan said. “Veterans are sick.” The U.S. House Committee on Veterans Affairs conducted two hearings in 2009 on the status of research into Gulf War illness. Testimony showed that federal agencies spent $350 million on 345 projects related to Gulf War veteran health care needs between 1992 and 2007. But critics say those projects didn’t focus on identifying causes and treatments for Gulf War illness. Instead, much of the research focused on stress and psychiatric conditions that had little or no relevance to the health of Gulf War veterans, who now range in age from late 30s to late 70s. By contrast, Sullivan said, Haley’s research is leading to answers that promise real help for veterans. An editorial accompanying the online version of Haley’s article praised the rigor of his research. It noted that he and other researchers believe exposure to toxic chemicals caused the illnesses. But the editorial also said stress can cause illness. “Experimental and real-world stress results in a repertoire of anatomic, physiological and chemical changes that lead to specific disorders and health outcomes,” the editorial said. Haley suggested that he may soon address the cause, or causes, of Gulf War illness. “We’re going to show proof of what causes this,” he said. “It will be a huge study with convincing evidence.”

It's awful, I know. I went through it with Klonopin and with Paxil. I wish you were given the advice to taper off. The Paxil withdrawal lasted about a month and was excrutiating, but got better with time. Not that it will last a month for you - we're all different. I hope you get through this quickly and feel better soon.

I felt sick to my stomach too. I can't imagine the devastating loss those families are feeling. There are no words.

Ha, I didn't notice the old one was appendix 1 and the new one was appendix 2. Thanks again, Peregrine. I was surprised to see the questions about trouble focusing eyes and light sensitivity. Sensitivity to light have been a problem and trouble focusing my eyes has been one of my biggest struggles. Glad this was included.

I was wondering what the specific questions were too. Thanks for pointing that out Peregrine!

Eww, why do guys do this? ...Pretend to be a concerned friend when they really just want something from you. I don't think it was about your health - I think he just finally realized he wasn't going to get what he wants! I'm sorry - I know how hurt you must feel. If it's any consolation, you have lots of friends here who will support you. ((hugs))

That's awesome! Congratulations! Have any idea what you might want to specialize in.... ?

I tried the anti-viral Famvir, but started feeling much worse so stopped. I might re-visit this, possibly a different a/v. She also recommended low dose naltrexone (I think it boosts the immune system?). I haven't tried it. I seem to recall her mentioning Imunovir too - I'm not sure what that one does. I need to go back and follow up with her - just hard because she doesn't take insurance and finances aren't great here. There are CFS patients who have had success with anti-virals, so maybe if she comes back positive it's something to try.

I'm sorry and I know. I keep asking myself the same question - keep looking for answers or stop the madness and try to learn to accept this? I've personally been going in circles for years. It's just really hard to stop looking, especially when you feel yourself getting worse over time. I think as long as we still have some fight left in us, we should keep trying, but when the search itself begins to suck the life out of us, then maybe it is wise take a break and come back to it later.

Pam- Was it an NK function test or NK count? They say NK function is often low in CFS. My CFS Doctor sent me for both tests - NK function was fine, but count was very low which she said is also seen in CFS. I was also tested for all kinds of viruses with Epstein Barr showing as chronic and active and a few others also showing positive. Not uncommon in CFS either. Is this a CFS specialist she's seeing?

I feel like I'm taking up too much air time - sorry about that. Foggy - small fiber neuropathy has been ruled in through skin biopsy (although one biopsy showed yes and another showed no) and he thinks my Valsalva test shows autonomic neuropathy. I think at the very least I do have sensory neuropathy based on symptoms, but can't say for sure if this is separate from POTS or causing it. I always get results that contradict eachother or might suggest things, but they're not sure. Like the standing norepi - it was very high once and totally normal another time. So HyperPOTS or not? I don't know - which is I why I wanted a tie breaker test. I did have an exercise stress test several years ago - maybe I can have him look at those results and tell me if it shows anything abnormal.

If anyone's interested... http://onlinelibrary.wiley.com/doi/10.1111/joim.12022/abstract

Dizzy - all I know is I asked the secretary if it picked up minute to minute heartrate and she said yes. They also have you keep a diary where you write down your symptoms, what time they happened and what you were doing. So I was able to write stuff like standing on the playground 3pm, rapid heart, took the stairs 10am, rapid heart etc. So I guess between the diary and the data picked up by the monitor he can kind of put two and two together.

Oh and I just remembered, I did bring up HyperPOTS a while back to the POTS neuro. I showed him the high Norepi and he said I didn't necessarily have HyperPOTS, but this can be a finding in POTS in general. I just don't want to try potent drugs that might make me sicker (I'm hypersensitive to medication), unless I know for sure I have the thing we're trying to treat.

I haven't found anyone very good around here. All the primary care Doctors seem to mostly push you off onto specialists. I can go into the city and see the POTS neuro who diagnosed me, but it's hard for me to get there, so I can't be running into NYC every time I have a new idea. And in this case one of the things I wanted to look at specifically was deconditioning and the shape my heart is in. He is doing the echo, so I'm going to bring this up again when we meet to discuss results.

You all make such great points and thanks for responding and relating to me (as always). Exactly! I don't expect every Doctor to be a POTS expert, but when I'm hand feeding you the information, at least be open minded and take a look at what I've brought. I know! And believe me, many saracastic comments came to mind, but I controlled myself. He might have been face to face with other POTsies before and completely missed the diagnosis. Chaos- interesting about the Holter results in CFS. I'm going to ask about this when I follow up with him for results.

So I go see a local Cardiologist (first mistake) armed with articles (pointless) about hyperPOTS and deconditioning. I had two goals: get him to give me a prescription for laying and standing Norepinephrine and if positive again, talk to him about treating with Clonodine or similar medication recommended for HyperPOTS; have him help me determine if I'm deconditioned (based on criteria listed in article) and/or if I have a smaller than usual heart. If yes, ask him to send me for cardiac rehab. I figured no need for a far away specialist - a local Doctor could handle these requests. Here's how it went: "So you have orthostatic hypotension" (cliche` #1) "No, I have POTS" "I've never heard of that, what does it stand for?" (cliche` #2) At this point I knew I was in trouble and pictured myself running out of there like the roadrunner, leaving only a puff of smoke. "Postural Orthostatic Tachycardia Syndrome" All he hears is "orthostatic" and says, "You have orthostatic hypotension." "No, I have orthostatic tachycardia" "I've never heard of orthostatic tachycardia. So you have palpitations. How often?" "Um, when I stand up" (hence the "orthostatic") So he doesn't trust me that I don't have OH, and says "I'll be the judge of that"... even though I have just shown him tilt test results which shows OI, not OH. He makes me lay down and stand up to take my blood pressure. "You don't have Orthostatic Hypotension" "I know, I have POTS" "What you have is very rare. No other patient in my practice has this." (cliche` #3) "So anyway, Dr, there is this thing called Hyperadrenergic POTS. I was hoping to be tested.... they treat with Clonodine..." I break out the article and past norepi results. He looks at past norepinephrine blood results which were 1001. And says, "I don't think this means anything, it's only slightly elevated." I try to bring up deconditioning, break out the article - he's not listening, he has his own agenda. "So here's what we're going to do - a 24 hour holter monitor and an echocardiogram." Standard Cardiologist protocol I guess. So here I sit with leads on my chest, a heavy black box hanging from a strap around my neck that smells like old lady perfume, which I'm sure is residue from his poor last victim. Nice man, but if he would have just listened to me, took the time to look at the info in my articles, I would have met my objectives today. And I do blame myself- I should have known better. But the good thing is for the first time I'm not upset or angry - I'm actually amused and had to share with the only people in the world who would understand why.

I'm having a good couple of days myself. Yesterday I took my daughter to school, did some Christmas shopping, picked her up, took her for a little bike ride, made dinner, and played a board game with my son last night. I felt so happy and thought to myself, look at all I can do when I'm feeling better. It might not be a lot by normal standards, but for my POTSie self, it was a lot. I usually get these better days the week before my period, which I can't explain, but if I could bottle whatever it is, I would. I'm grateful for the good days and take great advantage of them. It's reassuring because it tells me my body knows what it's supposed to do, but it's also frustrating because I can't figure out why I can be semi-functional one moment and then disabled the next.

C- you're right... taken care of.

YES! Thank you!

Thanks,it worked and it talks about heart size, but I'm still looking for V02 max info. I'm pretty sure it was Levine..?

Alex- The link isn't working for me. I pasted it into my browser and got this when I went there: Your action has resulted in an error. Please click the Back button in your browser and try again.

I'm looking for Dr. Levine's study where he defines deconditioning. He talks specifically about heart size and about V02 Max. I'm finding stuff by him, but not with this particular information. I have a cardiology apppintment tomorrow and I'd like to bring that article along to get this Doctor's thoughts on some things. Thanks for your help.

Batik- I added your suggestions. Isn't that sad that family members would actually abuse a sick person. K&ajsmom - I have no problem with you venting and anyone else who wants to, feel free! It feels good to get it off your chest. My experience has been a mixed bag. There are times where I feel certain loved ones are annoyed by the whole thing, but quietly tolerating it. Definitely feel they just don't get how bad it is. There are also supportive moments. Not so much caretaking... I'd like a little more of that.