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sleeper692
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Posts posted by sleeper692
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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.
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Pete, whats SSB? And is it only taken from your VA disability award only. Does this have to do with taking back money that was given to you when you got out of the Military like Severance pay?
Thanks for the info.
SSB = Special Separation Benefit. It is essentially severance pay. SSB was being handed out left and right when Clinton took office after the Gulf War. He was dead set on cutting the military budget and they offered SSB to people as an incentive to get out of the military. It was also paid, as in my case, to officers that were involuntarily separated. No one wants a pilot with chronic migraines and they sure as hell didn't tell me that I should have filed for a disability discharge let alone that I might be eligible for VA benefits. They weren't so open about such things back then. The folks getting out now have it way better as far as benefits and being educated about them than I did. But, I digress.
So 19 years after the fact they are taking my disability pay to pay back the SSB. I even have to pay back the portion that Uncle Sam took in taxes. It sounds a little like double-dipping to me but there's not much I can do about it. The sad part is that the law (and the VA) doesn't take into account any hardship this recoupment might create. There is no outlet that I have found that allows for hardship reduction in payments.
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I started Lyrica a week ago for neuralgic pain and headaches. This drug has turned into another nightmare for me as so many others have.
Lyrica makes me VERY drowsy and leaves me feeling tired. It makes me dizzy and I walk into walls and such. It has given me a ravenous appetite which is not a good thing as I'm trying to lose weight, not pack it back on. It makes my muscles twitch like I'm being electrically shocked. In the last few days I've developed a nasty, red rash on the back of my hands and this morning I had to sneeze just after I woke up and was left with a handful of bloody mucous.
As today was a federal holiday, I could not reach my neurologist. I left a note via My HealtheVet and will try to call tomorrow.
I'm a Gulf War vet with GWI illness. A research report was just released noting that GWV's have a marked increase of adverse reactions to multi-pharacotherapy. This is 6th or 7th drug I've been prescribed in the last year or so that I've had to be taken off of because it was doing more harm than good. One drug, topamirate (Topamax) increased my tinnitus dramatically and, even after being off it for two months, the tinnitus has not gone back down to its previous volume.
I had high hopes for Lyrica but I'm sure my doc will tell me to stop it tomorrow.
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Welcome!
I have had the same issue having to wait over a year while they recoup my SSB. I submitted a letter of hardship along with a financial statement of income vs. debt and asked to have the payment lowered so I had some money coming in. The VA responded with a letter saying that the law does not allow any sort of debt reduction or alteration of payment and that the full recoupment of the SSB must happen before they are allowed to give me any disability payments.
Not only did I write a letter, I went to the VARO in person to plead my case and was met with the same answer and just a tad bit of sympathy. I went to my social worker on several occasions trying to get some assistance but they could not (would not?) give me any assistance since I was not "chronically homeless" or in a treatment program for substance abuse and living on the street. Fortunately for me my rating has increased from 30% to 90% (and I'm waiting on IU) so it sped up my recoupment and I will finally start getting compensation the first of next month. In the mean time I've drained my mother's savings account and
tapped every form of public assistance that I could find (SNAP, TANF...whatever was on the table).
I know its tough and it seems unfair. The purpose of the law is so that a retired veteran doesn't get retirement pay and disability pay at the same time (or something like that, I'm no expert on the subject). However, they consider SSB retirement pay even though it might have been 15 or 20 years ago that you were paid.
Personally, I think it is wrong to apply the law to SSB. I wrote a strong letter to my congressmen asking them to look into it. I got nice letters back saying that they would take it into consideration. I don't expect anything more to come of it but I do try to take advantage of communications with my representatives in Congress.
Hang in there!
Pete
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Berta,
Thanks for the good advice and support. I haven't had a chance yet to talk to my lawyer as I didn't get the phone call from the social worker until late Friday afternoon. I will be giving him a call on Tuesday, after the holiday, to see if I should still pursue this or not. If my reconsideration has been denied, as I suspect by the change in my online status, then it will be time to file appeal and wait for the ALJ hearing which could easily be two years down the road. At that point, he may just send me to his own doctor for evaluation.
We sent in all my past C&P exams as well as medical records. Right now I'm waiting on an IU claim to be adjudicated. If that comes through, we'll send that letter in to SS right away. I'm just hoping that they haven't denied me at reconsideration already. Having to wait on the IU claim is another story. That claim was screwed up and I should have had that positive decision letter on Jan. 30th in time to send in before SS did my reconsideration review. Instead, the decision letter showed that the rater ignored the hard evidence from my C&P exams which clearly showed I met the criteria for IU. Now my VSO has a supervisor at the VARO reviewing the decision.
Between dealing with my VA health providers and with the incompetence at my VARO, I've probably missed turning in two very important documents that would have given great favor to my SS claim. Instead, delays and illegitimate denials on both fronts at the VA have probably cost me at the reconsideration level and is now forcing me to wait in the long line to reach an ALJ.
Anyway, I will talk to my lawyer on Tuesday and see if he can inquire about the reconsideration. If its not too late, I'll make an appointment with the Patient Advocate immediately after hearing from my attorney. That's probably where I should have gone in the first place. This particular social worker has never seemed very eager to go out of her way to get me help in other matters so I should have figured she wouldn't make anything happen with this.
Its just very, very frustrating. I so appreciate everyone's support. Once again, if it were not for my brothers and sisters at Hadit, I don't know what I'd do.
Pete
If the Patient advocate doesn't help you, time to make an appointment with the VAMC director.
What does your lawyer think about this?
Did any past C &P exam you had cover anything to do with physical capacity functioning? Then again if they did, I assume the SSA wopuld have that info.
Many VA Patient advocates do a great job, so maybe best to see what they can do first.
I have a great friend locally who can be a very difficult VA patient.Some of his VA problems are of his own doing and he needs to just calm down. Not the case here with you at all..
He has 2 PHs, Section 1151 100%, plus SMC, and PTSD , and AO cancer- in remission, He deals with a lot.
But the last VA problem he had was totally uncalled for.
Luckily the VAMC allowed me to interfene for him and talk to the Patient advocate in his place, with his permission.
I was actually prepared to go over her head if needed, but within hours she turned the situation around for him right away by speaking to the doctor herself.
It is always good to talk to the Patient Advocate first.The ones who do a good job are truly unsung heroes of the VA.
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Well, I contacted my social worker as recommended and she looked into the situation. She called me back yesterday and fed me a line of crap that left me astounded.
She said she spoke with my doctor as well as the folks at physical rehab and they both said that they "aren't trained" to fill out a residual function capacity form. So I asked how could a medical doctor who has been treating me for the past three years, with whom I just had a full workup with at the end of December, not be able to fill out a straightforward form regarding my functional capacity? She seems to be comfortable prescribing medications based on a simple written message complaining of whatever but she can't fill out a simple form to give me a hand. What's the friggin' difference?
Her response was that the doctors are here to treat and not do examinations to fill out forms. Even after I reminded her of the VA directive which specifically includes Social Security forms and the doctors duty to assist, she said she couldn't do anything more and told me to contact the patient advocate if I wished to pursue it further.
Today I noticed that my status on the SS site went from "no decision has yet been made on your claim" to " We Cannot Process Your Request At This Time." The last time it changed like that, I got a denial letter in the mail a couple of days later.
So now I'm really pissed. I gave this form to my doctor almost two months ago. That would have been plenty of time for her to fill it out and get it back to my attorney to be submitted to SS before they reviewed my case for consideration. Now I'm guessing I've been denied yet again tho I hope its just that the SS system is down for maintenance.
I'll be calling for an appointment with the patient advocate first thing Monday morning.
Can anyone tell me how I go about requesting a different PCP? I'm done with this one.
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My VSO told me that they have pulled everyone but two raters to work claims while those remaining two are working all the appeals at the Portland VARO.
I can tell you from my recent decision letter in which pretty much everything was denied despite hard evidence, the raters are whipping out decisions as fast as they can but the quality of those decisions is piss poor. When my decision letter hit my VSO's desk, she was on the phone to me and on the way to the VARO with both barrels blazing because the rater clearly ignored 90% of the evidence. Whoever the rater was read just enough of the C*&P to deny and pass my claim off as completed.
This is also indicative of the recent hiring of new raters in the past year. They seem to have been trained under fire and have no idea what they are doing. This ineptness just clogs up the system even more as appeals have to be filed and the poor schmucks left with that huge pile are no doubt overworked and pissed off. I know I would be if I saw that half my workload was fixing stupid mistakes by the initial rater.
I was reading some piece of VA propaganda somewhere the other day that said that in something like 5 years, there should no longer be any backlog and no veteran should have to wait longer than 125 days to have their claim adjudicated. While I sure hope that is the case, with hundred of thousands of new veterans hitting the streets I seriously doubt it.
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I just got back from a meeting with my VSO. She was livid about the IU denial. She took my file directly to a supervisor at the VARO. She said the supervisor was as shocked at the denial as she was. So the supervisor asked for my tax returns to show that I'm not gainfully employed as "additional evidence." I took those documents to my VSO today. She said that the County and the VA have an agreement that cases like mine in which there is a glaringly obvious mistake will be handled informally between the VARO supervisor and the VSO within 30 days. My VSO is walking my tax returns to the VARO tomorrow. The supervisor will review the case personally and my VSO said she expects a decision in about a week.
Wow! It just shows how valuable a good VSO can be. Hopefully in a week or so I'll be posting a new success story!!
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Excellent advise. Thank you to both of you. I will contact my VA social worker first thing Monday morning armed with the VA directive.
I filled out the proper ROI forms so I know that is not the issue. I just think this particular doctor is unwilling to help. I'm not sure how favorable she'll be when she fills out the report after having it rammed down her throat but that's not my concern. I'm about ready to ask for a new PCP anyway as this doc really hasn't been very helpful with my medical care as it is.
Thanks again. I don't know what I would do without all the good folks on this board!!!
Pete
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My medical doctor refused to fill out my physical capacity function report that my lawyer requested for SSDI.
Don't VA doctors have a duty to assist in these matters? I remember reading once upon a time that they are *required* to assist veteran's by filling out these forms for other agencies, particularly Social Security.
Can someone cite the regulation for me or tell me I'm wrong? My shrink didn't seem to have any problem filling it out but my PCP is being a....well, I'll leave the expletives out. Even more frustrating is that this is not the first issue she has refused to help me with that was not directly connected to the VA.
Thanks in advance,
Pete
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Congrats!
I bet you're going to be even happier when they get your pay started! Spend wisely (but have a little fun, what the heck!)
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Oh Carlie, just when I was down in the dumps your little "YIP-PEE !" just sent me into a giggle. Thanks, I needed that! You can bet I'm going to work on the high percentage items first. That last 10% is always the toughest!!
usmc89: I'm already sc'd for IBS, they just denied my increase. Apparently they aren't convinced since I don't go to the doctor every time I have cramps and such. I don't think the rater interpreted my medical records or C&P exam correctly as I definitely fit the rating criteria for the increase. I'm even on meds to control the diarrhea. "Rater Blindness" strikes again.
Reddit: I was denied the sleep apnea due to a couple of screw ups. First, my VSO apparently decided to claim that my sleep apnea was secondary to polyarthralgia (joint pain) which is absurd. It should have been claimed under the Gulf War presumptives as a respiratory and sleep problem and submitted along with the abundance of evidence available online that clearly demonstrates sleep apnea is a noted problem in GWV's. Secondly, the C&P exam I had for sleep apnea was totally incompetent. I have a thread outlining that whole deal in the C&P Questions forum. I suggest you find it and read it so you don't get hosed like I did. In summary, they sent me for the C&P before the sleep doctor had even written up the diagnosis for obstructive sleep apnea from my sleep study and put me on a CPAP. The doctor basically pencil whipped the entire exam and said that my sleep apnea was not service connected (again, despite the presumptives and evidence). So I will be writing up the appeal myself and supplying evidence from various studies to give to my VSO to submit. I will be challenging the competence of the exam and correcting the reasons for service connection. I should have been granted 50% according to the rating schedule which would have put me right over the top to 100%.
As for the IU, their reasoning for denial is just ridiculous. First, they shrink said that, based on my 70% rating for PTSD/depression, that I should be able to work as long as I don't have a job that does not "involve significant social interaction or frequent complex problem solving or other complex cognitive tasks" (In other words, they said I can work at the VBA...hah.) They completely ignored the statement that the shrink included in the same exam that said "however, when taking into account his physical ailments such as migraines and IBS, it may be difficult for him to maintain full time employment." I guess they only use the parts of the exam that they want
They also stated that I had earned enough money to show "gainful employment." In the last two years my meager income was well below the US government guidelines for poverty and, according to CFR 38, is considered marginal employment. So in this case I can also challenge the fact that they ignored their own regulations as well as ignoring my C&P exams. Not only did the shrink indicate that I may not be able to work, the medical doctor indicated that it would be very difficult for me to hold down a full time job due to my frequent absences due to migraines. They chose to ignore that statement as well. Unless I'm just stupid and wishful, this appeal should be a slam dunk if it is written properly.
But, mostly, THANK YOU to all of you. I'm happy for the 10% increase. Even a little victory is a victory!
Pete
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Just FYI: I received my decision letter today with my claim for myoclonus included. Not only did they deny service connection, they said that the condition was not disabling enough to merit any percentage. This denial is despite my diagnosis by my neurologist and the doc at my C&P exam as well as being on medication for treatment.
Bet your ass I'm appealing this one!
Pete
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Thanks JD. That's a damn good read!
Thanks JD. That's a damn good read!
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First the good: I got an increase on my migraines from 30 to 50 percent raising my overall percentage to 90%. As far as I'm concerned, the migraines alone should be worth 100% but I imagine whoever wrote the rating schedule has never had to live with almost daily, mind-blowing headaches not to mention the adverse reactions to the various medications for controlling them. (Sorry,..,I'm venting.)
The bad: I was denied increase for IBS, denied service connection for myoclonus and moderate chronic obstructive sleep apnea (with CPAP), both of which should have applied under the Gulf War presumptives. They also denied claims for GERD and alcohol dependance both of which I never claimed. I don't understand how they can deny a claim I never made but who am I to question the mystical happenings at VBA.
The ugly: I was denied TDIU based on my part-time work as a freelance photographer. They claimed that my work was "gainful employment" despite the fact that I only earned $6800 last year. An amount that was, needless to say, not enough to keep a roof over my head or food in the fridge without family draining savings accounts to keep me afloat let alone that amount not meeting federal standards for gainful employment. I'd like to see them live on just a little over $500 a month.
I'm still waiting on my appeal for joint pain and insomnia. I have new claims starting for degenerative disc syndrome in my neck and lumbar region with a ton of medical evidence from my military medical records to go along with my current pharmacological and physical therapy treatment. If they won't give me IU, I'll just keep scraping until I get to 100% straight up.
I have half a mind to go to the VARO and apply for a job and see if they will hire me.
Anyway, at least something positive came of this round. I'll be filing appeals and new claims next week.
Pete
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Secure messaging is working fine for me. Be patient. All too often they are working on the system on weekends and things will seem to be broken but start working again come Monday. Same for ebenefits.
Remember, just like grenades, MyHealtheVet was put together by the lowest bidder.
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Just a reminder to our GW Vets that you have the opportunity for your thoughts to be heard:
RAC will Meet in Joint Session with NRAC, GWSC to Work Toward Finalizing Plan
The U.S. Department of Veterans (VA) Affairs Research Advisory Committee on Gulf War Veterans Illnesses (RAC-GWVI) will hold its next meetings on Tues., Jan. 31 and Weds., Feb. 1, 2012 in Washington, DC.
The meetings begin at 8:30 a.m. on Tues., Jan. 30, and at 8:15 a.m. on Weds., Feb. 1. Both days' meetings will be preceded by an open coffee/tea pastries at 8:00 a.m. for all attendee, which is an excellent opportunity to talk informally with committee members, presenters, and other attendees. There are no formal arrangements for lunch on Jan. 30, potentially creating an additional opportunity to have similar discussions over lunch.
Two public comment periods are available, at 3:45 p.m. on the first day of meetings, and at 11:45 a.m. on the second. Times are approximate and could be sooner or later depending upon the duration of earlier agenda items.
For those unable to attend in person, you can listen in whole or part via teleconference. The call-in number is toll-free 1-800-767-1750 and the access code is 82477# .
Written comments for the committee can be submitted to rac@bu.edu.
Please all write up your comments on needs re spouses, children and input suggestions re research needs and needs re VA attention. You can email in your comments to rac@bu.edu.This is a big chance for all to have your comments on the record....you can summarrize your spouses situation and your family and then cover suggestions re research and what ever else you want to suggest re VA....I reccommend to make suggested specific suggestions as the main items of business! Please do this!!!! The email address is RAC@BU.edu.
(Thanks to Anthony Hardie @ 91outcomes.com and Denise Nichols @ NGWRC for the above text)
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Is your rating for 100% TDIU?
I'm no expert, but from what I understand, if you are rated 100% but NOT TDIU, you can continue to work and earn as normal.
I could be wrong. Hopefully a mod will chime in with more info. If I'm right, then you are good to go.
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Hang in there. Its a long road for all of us.
I've put in IRIS messages straight to my VARO and I get the typical government bs response. However, I do think that making contact and letting them know about your hardship helps. I've been screaming hardship for months but only get government-speak responses but when I talk to a real person at the VARO they are, at least, sympathetic and promise to look at my situation.
In the end, they want proof of your hardship. Mail or fax everything you can from eviction notices to past due bills and shut-off notices for utilities. Anything you can give them to lean on as evidence will help. Otherwise you'll get the "in fairness to other veteran's, your claim will be examined in its turn" message.
Keep leaning on your VSO too. They have a lot of coals in the fire and the more noise you make, the more attention you'll get. Even if they are just trying to get you to shut up and go away, the only way they can do that is getting on the horn with your VARO and pushing the issue.
In the end, patience is a virtue. So is retro pay!
Good luck!
Pete
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I have to agree with Carlie on this. Something doesn't sound right.
I called for an audiology exam and got an appointment at the Portland, OR VAMC in under 30 days. After my diagnosis of moderate hearing loss and tinnitus, I had my hearing aids in 30 days.
Unless they are severely understaffed then someone must be pulling your chain. Make an appointment with a patient advocate and let them run interference for you. You might be surprised what they can get done for you.
Pete
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I had something similar happen so maybe I can help shed some light on at least some of your questions.
I put in a claim for several things (PTSD, migraines, IBS). I went to my C&P exam and waited for the brown envelope. In the mean time, I kept an eye on my ebenefits status. I saw my claim move into the decision phase then a few days later the same letters you saw showed up on my ebenefits. They rating later said I was at 80%. Then, just as quickly as it moved up the chain, my claim status fell back into the development phase and I had no idea what was going on.
About a week later I got the big brown envelope in the mail explaining what they did. What the rater did was grant what they could then deferred my claim for IU plus a bunch of other things that they found in my VA medical records. They inferred those claims and my VSO put in the paperwork for IU along with sleep apnea and a bunch of other Gulf War stuff. After that, I went to another C&P and my claim moved up to decision, back to development then back to "preparing for a decision" (under the new listings). So its not unusual to get part of your claim rated then see the whole thing go back and forth in ebenefits.
So to answer your questions, yes, some of your contentions may have been deferred. Yes, you are rated at 60% but you won't know what the rating is for or what has been deferred until you get the paperwork in the mail. I imagine you could call the 800# and they could give you more information.
If they need you to resubmit your sleep apnea information, they will say so in your rating letter. Your claim will fall backwards on ebenefits until they get the information they need to process the rest of your claim. They may just want you to go to a C&P exam so one of their docs can confirm your sleep apnea and whether or not its service related. I know it sounds redundant but that is what they did with me even though my medical records were very clear on the point. Sometimes you just have to jump through hoops.
If you have a service officer, he/she should be able to help you with this. If you don't have a VSO, then I would suggest finding one and let them help you with all the details. They can save you from a lot of the confusion as they generally have a line to someone at your regional office they can talk to to sort things out.
Pete
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John,
I'm glad you got through! Once you get to their clinic you should have about a half an hour with Dr. Schoffner. Take full advantage of that time. He has been the only doctor that I have ever talked to that had any idea what was going on with GWI. He answered a lot of my questions without treating me like I'm crazy. Don't be alarmed when he walks in with long hair and a silk jacket. They guy is too cool!
I don't know if you've been to Atlanta before and are even interested in being a tourist but if you have an extra day or two and can afford the hotel, you could ask them to schedule your return trip a day or two later. I didn't think ahead and was in and out before I had a chance to see anything. There is a lot of interesting stuff to see and I wish I had been smart enough to take advantage of the free trip.
Regardless, the folks at the clinic are really great and will treat you well. There is a great Mexican restaurant right across the street from the hotel that I highly recommend. Damned if I can remember the name but the food, drinks and service were great. The hotel is not really that far from the clinic either. I walked to the clinic in less than 30 minutes. It was nice to get the exercise.
Good luck!
Pete
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I've been waiting 14 months for a variety of new claims and increases tied into an IU claim at the Portland, OR VARO. Last week they sent me a nice letter to let me know that they were sorry for the delay and that they are still working on my claim.
Like a Christmas card from grandma, I looked in the envelope for a check but found nothing.
My claim is currently in the "preparation for a decision" mode according to ebenefits. I try not to get to excited when my claim jumps up a step as it has gone back into development twice already and I won't be surprised if it happens again.
For me, if they approve everything, I should get a nice retro check but most of that money is going straight back to family who have been keeping me afloat now for over a year while we all patiently wait. The system sucks but whatcha gonna do?
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This article suggests GWS could be a manifestation of a newly described autoimmune syndrome induced by adjuvants (ASIA). Adjuvants are agents added to vaccines to achieve a greater immune response using a minimum amount of antigen. GWS patients were subjected to heavy vaccination programs, and studies show adjuvants "may trigger inflammatory or autoimmune illnesses in genetically susceptible people."
Gulf War Syndrome as a part of the autoimmune (autoinflammatory) syndrome induced by adjuvant (ASIA)
Cpap
in Medication – Prescription Drugs-Health Issues
Posted
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