sleeper692

Hey Doc, Did you file for TDIU (Unemployability)? Based on my experience and bouncing your symptoms against the ratings table, you should be at or near 100% for CFS alone and quite likely to be granted TDIU if that is what you are seeking. But I'm not rating your case and I don't have access to the immense amount of information that your claims rater does. Again, I'm not a VSO and I am just offering my opinion. I can say your CFS exam went better than mine. My C&P doctor didn't even do an exam and ignored all previous mention and diagnosis' of CFS. Again, I am challenging the exam, the doctor's credentials and ability to conduct such an examine based on a GWI claim and the total lack of a physical exam. The other thing I would do, particularly with the CFS, is request a "Permanent and Total" rating be assigned if you get TDIU or a 100% rating. From what your examing doc states in your exam, your CFS has been ongoing since 2003 and hasn't shown any improvement and (maybe) none is expected. It does not hurt to ask. I asked and, for reasons I believe are less scrupulous than they sound, got a P&T rating. Unfortunately they gave me P&T for PTSD and NOT my GWI symptoms. I'm not happy with that and I am appealing all my physical claims so they get it right. Good luck. Let us know how things turn out!

Hey Snake Doc, First, I am not a VSO. I am, however, an ill Gulf War Veteran (GWV) that has been trapped in the hamster wheel of VA Gulf War claims for years now. I have some questions and observations: 1) Are you representing yourself or do you have a Veteran Service Officer (VSO)? 2) Am I correct that you filed a claim for "Gulf War Illness?? Since there is currently no directly assignable rating for GWI, my guess, based on experience, is that a pure GWI claim will summarily be denied. This is largely due to the fact that your VBA rater likely does not understand the medical side of GWI and likely does not understand or fully implement the VA regulations for rating illnesses associated with GWI (such as FM, CFS, IBS, etc). 3) Was your C&P exam done by a typical VA doctor? Unless this doctor is far outside the norm for VA doctors, it is very likely that the examining doctor had no idea what GWI is, its medical definition, signs and symptoms, tests or potential treatments. Seeing as the doctor did not address GWI directly, the first thing I would do when appealing is to challenge the exam and the examining doctor. A doctor who does not know what GWI is, or worse, denies GWI exists, is incapable of providing a thorough and competent C&P exam for GWI. To my knowledge, there are only a handful of VA doctors across the country who might be able to give you a C&P exam but, unfortunately, those doctors are conducting research and have not been shuffled away to give C&P exams. Currently, there is also no DBQ for GWI though we might get one in the future if the politicians seem fit to follow through with the bills currently in Congress. 4) If you do not have a VSO, I strongly suggest you find one or hire an experienced attorney that handles VA claims. If you go with a VSO, shop around. Ask a VSO if they have experince with GWI claims, how many they have done and what sort of success rate do they have? I have found out the hard way that when a VSO does not understand the ins and outs of a GWI claim they will not correctly file your claims and appeals for you. I STRONGLY suggest that you insist on reviewing all documents your VSO intends to submit before he or she submits them. That simple move could sav you a lot of time down the road.

While this recent study connects GWI with definitive changes in the brain, so did the similar studies done by Dr. Haley at UT. Of course, as soon as a neurological connection was made by Dr. Haley the VA promptly cut off his funding. Dr. Haley has continued his research on his (and the universities) dime and has confirmed his results. He also released a study showing that the winds definitely brought low levels of chemical agents from bombed storage facilities right on top of coalition troops. After 22 years, there will likely never be a definitive cause for GWI. It is of the general opinion of the researchers doing valid work that it GWI is likely a result of a variety of different exposures plus a genetic component that makes some of us susceptible. While I agree that it would be nice if we could have solid answers as to what exactly caused this, I think it is more important now to find out how our bodies have been affected and finding effective treatments. Going backwards and spending limited research funding on speculative causes is money that could be better spent finding treatments to help us get some of our quality of life back and maybe keep us from keeling over dead. There are some interesting research projects and proposals to be found at the CDRMP web site: http://cdmrp.army.mil/ In particular interest in the research proposed by Dr. Ronald Bach from the Minneapolis VAMC. He postulates that one of the results of GWI is systemic inflammation which would, if he is correct, explain a great many things. It would also dovetail into the theory by Dr. Golomb that the underlying mechanism to all the symptoms of GWI is oxidative stress and mitochondrial damage. It would make sense that damaged and adaptive mitotic cells would cause inflammation as they try to adapt or die. If these two theories prove correct, proper dosing with CoQ10 and a daily aspirin could make a world of difference for ill GWV's.

Using the research that Annesse posted, if you already have a fibromyalgia diagnosis (and rating if you are a GWV) you might be able to claim the osteoporosis as secondary to the fibro. You would need a clear osteo diagnosis and not have it linked to a conclusive etiology. Admittedly, it would be a longshot and it would take a savvy VSO to help construct the claim properly but it could fly if you had the right medical evidence, have the luck to have your claim reviewed by a competent rater and don't mind the wait for your claim to be adjudicated. Good luck with this one. I hope you don't end up in the appeals queue if you file.

I know I left a long comment urging them to drop an end date completely when this regulation was in its proposal stage. I know its not easy but we all have to attack these things before they become regs. No one else is going to help us if we don't help ourselves in these sorts of matters.

This doc would be correct IF the VA doctors had a friggin' clue as to how to treat GWI. I saw my neurologist yesterday and gave him a handful of recent GWI research reports. The first thing he did was look for treatment recommendations because he basically admitted that he didn't know what to do other than treat my symptoms. As far as I can tell, for now anyway, an outside doc is just as good as a VA doc in the level of care and expertise they can provide. Sometimes I think that the docs that are relegated to doing C&P exams full time are there because they aren't up to snuff to treat patients or they screwed up somehow and that is the only position they will let them have. Regardless, not a one of my C&P docs have ever had a clue what I was talking about when I brought up toxic exposures and GWI. Its pretty sad.

You might be onto something. Looking at the legality of it, sulfur mustard gas certainly counts as a toxic agent. If a GWV was diagnosed with any of the respiratory illnesses associated with sulfur mustard gas and if the veteran could show they were exposed during deployment (i.e. exposed during the Khamisayah demolition) it might stand a chance. You'd need a well written nexus letter and documentation of some sort confirming the exposure. If you have a good VSO that thinks like a lawyer you might have a good shot at it. It sure as hell can't hurt to try. As for trying to link sleep apnea to mustard gas exposure, I don't see anywhere in the cfr that would give them the authority to grant the claim. Maybe Jim Bunker or Anthony Hardie have some information on that possibility.

I've got a buddy in Yuba City who is having no luck in finding a competent VSO. He's called all around but he is confused and not getting any answers. He's called CDVA, DAV etc but can't seem to find anyone. I'm hoping someone here might be in his area and can help me point him in the right direction. Thank you! Pete

I don't think there is anything (yet) in the presumptives for GWI that would allow you to claim osteoporosis. However, Dr. Beatrice Golomb at UCSD reported recently that she has found that GWV's consistently showed Vitamin D deficiency and has requested funding to further study it in GWV's.. My doctor found I had Vitamin D deficiency and I've been on supplements ever since. Vitamin D supplements have also been shown to help in reducing muscular pain and depression, both usual suspects in GWI. It will take you about 2 seconds of looking over a google search to learn that Vitamin D, or lack thereof, is a direct contributor to osteoporosis. Vitamin D deficiency also leads to tooth decay. I've had teeth rotting out of my head faster than a tweaker smoking 10 bowls a day. Now that I've been on supplements for a year my tooth decay issues have slowed dramatically. Without definitive research showing that Vitamin D deficiency is connected, or presumed to be connected, to service in the Gulf, I believe we will be out of luck on winning any claims in that regard. Hell, they can't get the current presumptives straight at BVA. Imagine the confusion when they try to figure out claims connected to a vitamin deficiency. I'd pay money to see that goat show!

I love this Fillner guy! Its about time someone raised some hell. "Who is personally responsible?!?" He put some fire under Hickey's hind end and demanded the end of the BS. Did I hear that right, $1.86 million in bonuses last year? Bonuses? That money could have gone to pay for lot of things other than VBA executives vacation homes. Dental care anyone? 125 days and 98% quality for processing claims in 2012 is promised. I can say that is total BS as I have several claims that are way older than 125 days not to mention a serious error rate with more than 50% of my initial claims in appeal. Speaking of appeals, I never heard anything mentioned about how VBA is handling the appeals backlog. Did I just miss that or did they not cover that? I liked how Braley made an issue out of C&P docs overriding primary care docs. I've had that issue more than once myself. This is lengthy but definitely worth a watch or listen. Watch it in parts if need be but if you are a vet with claim issues then you should watch this.

I have migraines that come in waves and are quite debilitating. Avoiding triggers such as stress, bright light, and loud noise is the first step. I've been on damn near every medication that is available for prevention of migraines. Unfortunately I've not tolerated any of them and I am starting to lean on non-medical treatments. I still have success beating back a migraine with naproxen NA and sumatriptan but I risk serotonin syndrome due to my high dose of zoloft every time I take sumatriptan. I just got started with weekly yoga classes and a weekly acupuncture clinic. Both of these are free to veterans in my community. Ask your doctors or the folks at your local clinic as they may have info on free or reduced fee yoga and acupuncture where you live. They might even have such classes or clinics at your VAMC. I can't vouch for the efficacy of the yoga or acupuncture on my headaches or other symptoms yet since I've only started but they can't be any worse than the toxic soup of medications the VA doctors try to ram down my throat. If nothing else they get me out of the house and I get to meet other veterans. One of the other things that has greatly helped me avoid migraines is getting a good night's sleep. My docs sent me to a sleep study where they found I have obstructive sleep apnea. They issued me a CPAP machine and, other than getting used to the damn thing, it has improved the quality of my sleep tremendously. I'm also on prazosin which is an alpha blocker and has almost completely stopped the nightmares I was experiencing nightly. I have found that getting proper sleep has cut my migraine attacks in half. I used to wake up already deep into a migraine. Since I've started on the CPAP 6 months ago I've only had one morning migraine which is just amazing considering I was losing an average of 2 days a week simply waking up already in distress! Diet is another thing I pay attention to. Eating in a reasonably healthy manner and not imbibing in lots of alcohol helps too. Ultimately, I think you will not find one easy cure-all for your migraines. It takes a concerted effort on many fronts to prevent migraines and every little bit helps! Pete

I use it for IBS and neuralgia. Better than anything the VA has given me and no side effects. I have a two part question: What, if anything, can the VA do to me if they give me a pee test and find I've been using marijuana? I've already told my doctors I smoke it to relieve my IBS and neuralgia symptoms. They didn't say much. What if I am in a state that has legalized medical marijuana and I have my card issued from a state licensed doctor allowing me to purchase, carry and use marijuana for my stated medical reasons?

I want to share my experience in helping with getting congressional support for GWI research funding and let everyone know that we need more GWV's in the fight to get funding for research. We also need more help in convincing Congress to hold hearings about the VA's blatant ignorance of research findings and possible treatments for GWI. This also includes the incompetence at the VARO level in rating claims for GWV's which should be important to every one of you. Yesterday was the deadline to get Congressional support from State Representatives on a "Dear Colleague" letter requesting $25 million for GWI research funding in FY13. The effort was spearheaded by Anthony Hardie (91outcomes.com) and Denise Nichols, a Vietnam era Air Force Nurse. They got a group of us together on Facebook and asked us to start calling not only the representatives from our own state but representatives from all over. As a group, we made numerous phone calls and emails to staffers asking for their Rep's support by signing onto the letter. It was my first time doing more than simply contacting my own Congressmen. At first I was slightly intimidated but after the first couple of calls, I got my feet under me and was able to politely pressure the staffers for a response. Many did respond, calling me back to let me know that their Rep had signed on to the letter. The campaign was a success as you can read here: Record Level Congressional Support for Gulf War Illness Treatment Funding as Kucinich-Roe Sign-On Deadline is Reached (Thanks to Anthony Hardie at 91outcomes.com) Coming up very soon, we are going to have to do the same thing on the Senate side. It will be yet another opportunity for us to join together as a force and put as much pressure as possible on every Senator we can reach. There are some scrooge Republicans that definitely need to hear from more veteran's than they ever knew existed. We also need letters describing the problems you've had as a GWV with your VA doctors not having any knowledge of all the research findings that are out there and denying that GWI even exists. We need letters describing your claims mess because the raters and C&P examiners don't understand GWI. We are making headway but we need everyone's help. It's easy to write a letter or make a few phone calls and that is all that is needed in most cases. If you want to help yourself and other GWV's, please go to the Facebook group: Gulf War Illness: Taking Care of Business. It is a closed group so you will have to request entrance. If that doesn't work for you, contact Kelly Staples McKenna or Denise Nichols on Facebook and they can add you to the group. If you have letters about your VA experiences and the VA's ignorance of GWI on the medical and/or rating side, send them directly to Denise Nichols at DSNurse1@yahoo.com. She will forward them directly to Capitol Hill. She told me just last night that the congressmen are reading them and are alarmed at what we are having to go through in dealing with the VA. We need more letters so Congress will be convinced to hold hearings about the VA's incompetent treatment of GWV's and GWI. The VA isn't going to do this for us. We have to fight the good fight and keep making sure our voices are heard on Capitol Hill. As yesterday's victory demonstrated, if we shout loud enough they will listen. Don't bunker down and just hope things get better. Pitch in as you can. Even if you only make one phone call or send one email, it will help us all. Pete

I've had mixed results with bugging them versus leaving them alone. Are you going through a VSO? I wrote letters to my VARO asking them to expedite my claims, including IU, due to hardship. Well, that is exactly what they did. They went through my claim as fast as they could. They skimmed over the very strong evidence in my favor and denied pretty much the whole thing. Now my claims are being reviewed by the VARO after my VSO raised hell with them. Sometimes the squeaky wheel gets the oil. Sometimes it just gets replaced. Or as someone once said, "you spin the wheel, you takes your chances." If you don't have a VSO, I would suggest you find a competent one that can fight the battle for you. It sure makes it a lot easier in the long run. Pete

Thanks for posting this Carlie. Its very enlightening. The percentages of errors in St. Petersburg are alarming. I imagine they are similar across the nation. Imagine if your doctor had a 42% error rate! Or if an airline pilot missed his destination 42% of the time. They'd be out the door faster than valley girl with a credit card on the way to the mall. I wish the OIG would do an inspection of my VARO. I'm so tired of appealing claims that get turned down because the rating authority doesn't have a clue as to what they are doing.

Congrats! Its always great to see a brother get what he deserves!! I wish you luck and hope you have the same ease with your TDIU! Pete

Yep, I get night sweats pretty bad sometimes but I don't think that is what is causing my mask straps to not fit from one night to the other. I do think they stretch a bit over time. I noticed last night that turning my head on the pillow caused the mask to go wonkers on my nose. I dunno, its just another thing to deal with and I'm sure I'll get used to it as time goes by. Sleep apnea is not directly mentioned in the GW presumptives but it easily falls into the respiratory and neurological categories. The main problem is that the C&P doctors aren't up on the latest GW research. The raters aren't either let alone the fact that the raters are not medical types and have to go by what the docs say. When it comes to GW presumptives, the whole thing is one giant goat screw. But that's another thread. ;) Basser, I've seen those nasal adapters. I'm not sure I could tolerate one of those. They look extremely uncomfortable. But, when I have my meeting with the sleep doc next month, I intend to bring it up. They have said they will pretty much give me any kind of mask any time I want to try something different. I can give it a shot and always go back to the mask if I don't like it. With my flexeril and cloneazepam at bedtime, I'm not sure if the docs will prescribe me sleep meds but I'm going to ask. My current meds make me drowsy and let me fall asleep but they don't keep me from waking up all night long. I think the best chance I have in the immediate future for getting used to this CPAP is having something that will just straight up knock me out. As it is, not wearing the mask for most of the night isn't doing me much good except for kick-starting the dreams and that in itself has proved to be a dreadful experience. I've upped my exercise as much as possible, which is mostly walking, and that seems to help me sleep a little better but I still wake up through the night and find my mask laying on the side of the bed blowing air and the machine beeping. If my IU comes through and I get the retro, I'm hoping to buy an elliptical machine to get a bit more rigorous exercise. I'm willing to try anything legal at this point to get a good nights sleep. As it stands now, I dread going to bed because I know its going to be a long night until the sun comes up. Now, if the VA would just issue me a cute nurse to keep an eye on me all night, none of this would be an issue. I haven't found that option in the regs tho but I'll keep looking! ;)

Remember, just like your grenades, your eBenefits site was built by the lowest bidder.

Cooter, My apologies, that AHI of 91 was a dyslexic typo. My AHI is only 19. Sorry about that. As for a cause, they haven't listed anything in my records yet. I am on meds that could be contributing such as cloneazepam and flexeril at bedtime. There are a lot of studies that closely link sleep apnea in GWV's but they don't know why (yet). I have my first appointment with the sleep doctor late in March to review my use of the machine. Yes, I was denied S/C for OSA but I am challenging not only the decision but the competency of the exam. I have another thread in the C&P forum about it. Basically, they sent me for a C&P before I ever went in for my second sleep study to be titrated for the CPAP and the doc basically pencil whipped the whole exam. I'm with you on sleeping on my side facing the machine. That seems to work best but I do tend to move around in my sleep and all too often wake up finding that I have taken off the mask in my sleep. I'm definitely not getting the full therapeutic value out of it because of that. My mask covers my nose only and has the bar that rests on my forehead. I can adjust the angle of the top of the mask with an adjustable hinge which seems to help. The mask also inflates somewhat when the machine is turned on which helps it make a seal but it does make it somewhat uncomfortable after a while no matter how loose my straps are. And that's another thing, I must have CPAP gremlins. I swear the damn straps never fit the same from night to night. Its like someone came in and adjusted the straps when I wasn't around. Its very odd. I was looking online and found a special pillow with a cutout for the mask when you're sleeping on your side. I'm thinking of getting one to see if it helps me be a little more comfortable and not rip off the mask in my sleep. Have you noticed an increase in your dreaming since starting the machine? I used to never have dreams I remembered, now I am having very intense dreams/nightmares that sometime go on all friggin' night long. My shrink said that it is "normal" and has been noted to be particularly troublesome with vets that have PTSD. We're working on positive image therapy to try to deal with that. I think its a great idea but sometimes I think they're reaching with all this mental hooha. Pete

As always, many thanks to Anthony Hardie at 91outcomes.com for posting this information: Army Center for Military History Admits Gulf War Units' Records Were Destroyed

Reposting this by request: Denise Nichols posted in NGWRC / Veteran Information Network. Denise Nichols 3:12pm Feb 21 So far I have recieved and forwarded 4 letters: Jane Cooper, Lawrence Tracy, Wesley Crawford, and Marine Calhoun. I need more letters! I need 2 letters from each one addressing the 1. claims mess you each have, 2. one addressing the lack of appropriate VA health care based on lack of DR education/Knowledge on GWI that includes Drs, health care providers and C and P examiners.......need to know your specific location re va hospital/clinic and/or VARO! Need you to include your contact info re name, mailing address, email, phone no. on each So they can contact you! Also need a brief summary who you are which service,unit, where in theater in each of these 2 letters and summary of when you started process re dates claims for what, when denied, when refiled etc etc and the success re rating or failure(denial dates).......then on health letter re again specifics and dates and what happenned summary but get your points across. I am working my contacts hard to have hearings NOW ASAP this session!!! I have done this before with Shay's committee and that is how people were called forward to testify thru Shays Committeee. I am not editing or censoring but doing the hard work with the contacts to make it happen or die trying! I have met with these persons through all the years and called and updated them thru the years. They know me and I am just trying to have each of you to be heard! I need more letters!! My goal is multipe hearings house and senate and I am working thru staffers on committees and the members of the committee and their staffers, pushing every pressure point. email to me DSNurse1@yahoo.com please send to other fb pages with gw vets and email your contacts ------------------------------------------------------------- If it is not clear, which is wasn't to me when I first read it, Denise is asking any and all GWV's that have had issues with their VA doctors not providing you the proper treatment, or C&P docs not conducting proper exams, due to their lack of education about all the research that has been published about Gulf War Illness. That's one letter. She is also looking for a second letter if you have had any issues with your VARO and getting rated on GWI presumptive issues. Denise has been on the front lines for GWV's for some time now, attending the RAC-GWVI meetings and other government/congressional hearings on GWI and fighting for the rest of us. Any support you can give her by writing letters about your situation will help her make our voices heard in D.C. where it really counts.

Hey Cooter, I'm told by the sleep techs that a full face mask is harder to get a seal with. I have a mustache and goatee and they recommended that I not try a full face mask except as a last resort. My CPAP uses a program called "C+Flex" that sounds similar to your ASV. It "learns" my breathing and automatically lowers the pressure when I've stopped inhaling then increases the pressure when I start to inhale. It also will increase the pressure automatically if I don't inhale (as if my airway is blocked by my relaxed jaw). Sometimes I hold my breath just to see what it will do and, sure enough, it brings on the pressure and keeps upping it until I inhale again. No one at the hospital ever mentioned this function and I'm only aware of it after reading the manual for the machine. I'm actually pretty impressed that it can figure out when I'm inhaling and exhaling and knows just the right moment to change the pressure. I haven't heard of anyone getting more than 50% percent just for using the CPAP. There are some medical complications that will raise the rating, I think to 100%, but they are pretty serious complications. My AHI is 91, OSA only, and not related to medications. I'm playing hell trying to get service connected for CPAP use despite the plethora of studies showing marked increase of OSA in GWV's. I keep fighting them tho and one of these days they are going to grant it just to get me off their backs! HAH!

If you are having that kind of problem with the mask, you should take the machine, mask, hose and all, into the sleep clinic. They should have walk-in hours posted. They may be able to drop the pressure down and still have it be effective. I had a similar problem getting roused from sleep by my lips blowing raspberries due to the high pressure. They changed my prescription (the code on your card holds that info) and dropped the pressure a wee bit and the raspberries went away. Not only did the noise wake me up, I started laughing at the whole event and couldn't get back to sleep. You're right, it would make a good comedy bit.

I'm right there with you John. I've had my CPAP since November and I'm on my second mask. The mask I have now is really soft and sort of inflates when the machine comes on. While I have no trouble going to sleep with it, I have yet to make it all the way through a night with the damn thing on. Most of the time I wake up to find that I've ripped the mask off while I was asleep, with the machine beeping and the mask blowing air. Rarely do I bother to put it back on. I definitely get the dry mouth and nose even with the humidifier turned all the way up. I have not figured out a way to combat this yet. I've read that some people will use a saline gel in their nose to help prevent dryness. I'm not sure where you would find that. I looked in Rite-Aid and couldn't find anything like that. I used to never have dreams I could remember until I started using the CPAP for OSA. Now I have epic nightmares that seem to last all night long and is probably why I'm taking the mask off in my sleep. When I first started using it, I woke up several times and had no idea what in sam hell was on my face. I'm surprised I didn't tear the mask up I ripped it off my head so fast. I use a chin strap to keep me from breathing through my mouth. I might try the full face mask next as the chin strap isn't all that comfy come morning. But, yes, rest assured you are not the only one who is having trouble getting used to it. From what I've read on sleep sights, most people finally adjust to it and have little problems but it does take some time to get there. If you are having pain from the mask, try loosening it up a little bit more each night. Heed cooter's advice and wipe the mask (and your face) down every night. The oils from your skin will cause it to lose its seal and you will have to pull the mask on tighter to keep it sealed. You may be getting the pain from simply having the mask too tight. Keep the mask clean and it will stay sealed with a lot less pressure. Hang in there. Keep working with the sleep techs until you get the right mask and the right fit. In the long run, the CPAP will help you get the rest your body needs. Pete

Neurologist called me today. Took me off the Lyrica, told me to take benadryl for the rash and call him or the ER immediately if anything gets worse. Gabapentin was the first drug they tried me on for headaches and neuralgic pain. That made me so stupid people thought I was losing it. I could barely talk, I walked into walls and could barely comprehend what people were talking about. Not to mention that it made me so sleepy that I was pissing myself in my sleep because I was so knocked out. Went to Cymbalta after that and almost killed myself, then topimirate which caused so many side effects that I thought I was going to die and now the Lyrica. Verapamil is next. I've heard a lot of good about Lyrica. Unfortunately my body just can't tolerate it.