How to Handle Disability Re-Evaluation

By Holly Harding

1 min read

It can take years of appeals, stress, patience, and determination to secure disability coverage for migraine. For those of us lucky enough to attain coverage, the challenges don’t stop there. We are asked to provide documentation and justification for continuing coverage on a regular basis.

How do you justify disability coverage for migraine?

In the following video, Holly shares her experience with her most recent request to justify coverage. In addition to sharing ideas about how to handle these requests, she also speaks to the emotions that accompany them.

We invite you to share your experiences with justifying your continuing disability coverage in the comment section below. Thank you so much for being a part of our community.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Nancy Harris Bonk Moderator
Hi Holly Thank you! Such an important topic. The SSDI review process is stress provoking to say the least. As you said, having all our ducks in a row (so to speak) is imperative. I've been through this once and did see an independent doctor. I was approved again. I haven't been reviewed since. I'm thinking it may be because I'm so close to retirement age? Thanks for sharing, you are the best! Nancy Harris Bonk, Patient Leader/Moderator <a href='https://migraine.com' target='_blank'>Migraine.com</a> Team 
1. pigen51 Member
 <inline-mention username="Nancy Harris Bonk" user-id="3845796"/> I still suffer with migraines, around 20 days a month. I am on Vyepti, plus every 8 weeks or so I get a pain block. Not perfect by any means, but better than it was. Still I don't have anything that works as an abortive, so I am not happy about that. But instead of only 3-4 painfree days getting around 10 good days a month is a blessing. All the best, Tim
2. Nancy Harris Bonk Moderator
 <inline-mention username="pigen51" user-id="3906478"/> Thanks for getting back to me with your update. We've heard from many using a combination of CGRP medications and Botox, Is that something to consider discussing with your doctor? How about the acute medication Trudhesa a DHE nasal spray: <a href='https://www.trudhesa.com/' target='_blank' rel='noopener noreferrer ugc'>https://www.trudhesa.com/</a>. We also have information on this type of medication here; <a href='https://migraine.com/migraine-treatment/ergotamine' target='_blank'>https://migraine.com/migraine-treatment/ergotamine</a>. Any pain free days are great days, I'm hoping you get more and more! Have a good weekend, Nancy Harris Bonk, Patient Leader/Moderator <a href='https://migraine.com' target='_blank'>Migraine.com</a> Team
jenclem716 Member
I can relate to the stress. I monitor my mail every day, dreading the reciept of another evaluation demand, as I became disabled at a young age. And in addition to the stress, I have anxiety every day until my mail is received. So much information is required, and they don't give you much time to respond, whoch is also anxiety-inducing. I've recently changed doctors, too, so I'm worried about how they'll respond to the requests for information. 
1. Melissa Arnold Community Admin
 <inline-mention username="jenclem716" user-id="3768026"/> I hear you. It's a lot to keep track of and mistakes can be costly. :\ Don't be afraid to reach out to your old doctor and have them talk with the new one -- it's helpful for them to understand your treatment history and any recommendations they have moving forward. Maybe it will give you some peace of mind, too. Hugs. -Melissa, <a href='https://migraine.com' target='_blank'>migraine.com</a> team
2. Nancy Harris Bonk Moderator
 <inline-mention username="jenclem716" user-id="3768026"/> I hear this! I used to get a pit in my stomach and pretty much panic the minute anything from Social Security came in the mail. And the time constraints on returning their forms is ridiculous. I wonder if that's on purpose to make things more difficult. How are you doing today? Nancy Harris Bonk, Patient Leader/Moderator <a href='https://migraine.com' target='_blank'>Migraine.com</a> Team
glenny72 Member
I've been on LTD in Canada for over 8 years. I've been asked by my private insurance to re-assess my claim on several occasions, probably every 2 years. In fact, I just received a re-assessment letter yesterday, and it's making me very anxious It is very nerve-wracking as you want to be sure you're saying the same thing that you said in the past, especially if you got help filling it out from your doctor. I've also been asked in the past to see an independent doctor in person. When I finished seeing him, he wasn't sure why I was even sent to him, as it was obvious to him that I qualify. I recommend going through your old forms (assuming you've kept a copy), and try to be as consistent and truthful as possible. Wish me luck!
1. Nancy Harris Bonk Moderator
 <inline-mention username="glenny72" user-id="3746759"/> Great points, thank you for sharing them with us. I hope you keep us posted on your reassessment. Wishing you a low pain day, Nancy Harris Bonk Patient Leader/Moderator <a href='https://migraine.com' target='_blank'>Migraine.com</a> Team 
2. Holly Harding Moderator & Contributor
 <inline-mention username="glenny72" user-id="3746759"/> Thank you for sharing your earned-wisdom with us. Awful stuff. I had to see an independent doctor who I did not have a lot of faith in. It didn't appear that he had reviewed my case prior to my seeing him - he didn't do a proper evaluation of me and he didn't seem to be a specialist in migraine. That my financial future lies in his hands is terrifying. So sorry you're up for review once again. Sounds like you've got the process down pat, however. You're so right about consistency. Thinking of you and hoping this process unfolds smoothly for you. Glad you're with us - please stay in touch. Warmly- Holly <a href='https://-migraine.com' target='_blank' rel='noopener noreferrer ugc'>-migraine.com</a> team.
mbabi1970 Member
Hi Holly. I’ll start off by saying that u look terrific in this video. Just gorgeous . I’m so glad u brought up this topic. Disability reevaluation can be soul crushing. I have to be reevaluated for my LTD benefits every year. My drs have to complete so much paperwork( as do I) that now I have to pay for them to complete it. I don’t blame them. Then there’s the phone interview where they ask these ridiculous questions and you have to answer correctly. It’s almost as if they are trying to trip u up. It causes so much anxiety. Then there’s SSD reevaluation and this is different as they choose the independent dr for you to see. I have been thru this 3 times over 15 years and that may not seem like alot but coupled with LTD evaluations it is all consuming. I agree with everything you said. The best thing you can do is have all your ducks in a row. No one can tell your story better than you. Keep good records of visits, medications etc bc they want the proof. I guess the hardest part is having to validate our disability. Bc so many ppl abuse the system, the ones that are truly in need often are questioned. The questions you are asked are infuriating but we have to March along and validate ourselves bc we deserve this disability and we are entitled to every penny. I know this will never stop but just as we have to advocate for ourselves with our medical care we need to do the same with disability as well. Unfortunately it’s part of the journey and we have to keep fighting. We have rights!! Xo Michele 
1. Holly Harding Moderator & Contributor
 <inline-mention username="mbabi1970" user-id="3831011"/> Hi Michele- great to hear from you. You bring up great points. I do think these insurers are sometimes trying to trip us up - to see if we are scamming the system. It's very upsetting to receive this treatment when we are accessing benefits for valid reasons. I agree that there are likely a number of people who DO scam these systems who make things harder on the rest of us. I hate that you are having to pay for these reviews. It's my understanding that the insurance company compensates the doctors for their evaluations. I don't think it's at a rate that matches their time and efforts, but I know they get some funds (at least they do from my LTD insurer). And yes- the constant juggling of evaluations and needing to prove ourselves to private disability insurers against doing the same for social security is exhausting and, as many commented here, a huge cause for anxiety - when many of us deal with anxiety regularly anyway. Awful stuff! I have consulted with a lawyer out of fear of getting kicked off coverage. Can you imagine having to go to court to fight for your rights in this way all the while not receiving coverage? They would SO have the upper hand- as they could withhold benefits for months/years- dragging out the fight- while we, who are squeezing by financially - would be fighting to regain coverage. A nightmare. So sorry you are up against this as well, my dear. All my love. Holly (migraine.com team).
BrigetB Member
This sends my generalized anxiety disorder through the roof! I have only been through one revaluation but I qualified just a few years ago. So reading everyone’s comments it sounds like I will go through a few more! Paperwork and copies of things are so hard for me. The brain fog is very bad and my other comorbidities do not help. Having a Sleep condition, RA and lung disease sounds like I should qualify even more but they only care about migraines which trust me are still going strong. I wish I had kept a binder of all my notes and things I’ve tried over the years. It’s also frustrating because you can’t control how your doctor words things and to you this is the most important aspect of your life at the moment but for your doctor they have hundreds of patients. 
1. Holly Harding Moderator & Contributor
 <inline-mention username="BrigetB" user-id="6722469"/> Hi dear- I'm sorry this article raised your anxiety! It really is an upsetting process and I'm glad we've got a lot of community members ringing in with great wisdom and advice. You are very right that we can't control what our doctors say or how they say it. My doctor, who is a wonderful person, wrote in my evaluation something that was in a huff because he was angry they were questioning all of his careful notes and conclusions. So, instead of reiterating his work with me in a lengthy way- he wrote something short and curt. He gave me a copy and I begged him to write a more full-throated response that went into more depth about my case. Thankfully he did. I'm not sure it helped but I think it's a good example of how we can't always control what our doctors say or how they say it. Still, I primarily count on his clinic notes (sometimes illegible!) as the ones that I show my LTD and social security disability folks to illustrate my history and ongoing need. I keep copies of how I fill out their questionnaires to be sure I'm consistent - but I'm sure to be honest if things have shifted. Truly- I hate the whole process as I think all of us do- because who wants to focus even MORE on being disabled than we already have to when we live with and think about it all the time? Having to prove we're sick is an awful thing that can make us feel small and sad. As to you having additional conditions- I think they primarily focus on whatever it was that you were initially disabled for- regardless of whether you are juggling now multiple conditions (even though that's maddening as they're not looking at you as a whole person). Thanks for being in touch on this. We are here for you and want to hear how things are going for you. Warmly- Holly <a href='https://-migraine.com' target='_blank' rel='noopener noreferrer ugc'>-migraine.com</a> team.
mish22 Member
Hi Holly, The main thing is Records keep a good track . I always get copies from my doctors especially my neuro , pain mgt . I do not worry about my primary . And make sure anything else that has occurred to you from when you started ssd let them know . I had a MRI of my brain from 6 yrs apart and have white matter on my brain and bad memory loss , they said its from all the yrs of having migraines . I feel everyone should have this done from time to time especially if you find yourself forgetting a lot or your speech does not come out normal cant get the words out /.I only had one paper review . I am a mess . I found out 3 yrs ago i have severe kyphosis that no one ever took a mri of my back till we moved when my dad passed , that triggers my bad neck so ya just let them know everything . I forgot if its a paper records review or are you going to court . If that was the case have your attorney go with you . My doctors have said I can not work at all . that is important have them put that down .. good luck dont worry to much . 
1. Holly Harding Moderator & Contributor
 <inline-mention username="mish22" user-id="3834227"/> Such good points here. Yes. As we continue getting any further evaluations- and as our own conditions evolve or worsen, we must document these changes and send these along to these insurers. Good for you. I'm waiting to hear if they are continuing my coverage and have consulted with an attorney in case they kick me off. It's a hard wait and difficult not to worry with so much riding on this but I appreciate the support and wisdom. Thanks very much for your compassion and kindness. Warmly- Holly <a href='https://-migraine.com' target='_blank' rel='noopener noreferrer ugc'>-migraine.com</a> team.
CommunityMemberecc80a Member
Such an informational blog. I would like to thank <a href='https://migraine.com' target='_blank'>migraine.com</a> for sharing this wonderful blog with all of us. So much information is required here about h
1. DonnaFA Member
 Hi @CommunityMemberecc80a, thank you so much for your kind words! We're glad you are finding both relevant information and community here. Please let us know if there are any subjects you would like to see covered. - Warmly, Donna (team member)
2. Holly Harding Moderator & Contributor
 <inline-mention username="CommunityMemberecc80a" user-id="6724971"/> Thank you so much for chiming in to let us know how this post resonated with you. It looks like some of your comment may have gotten chopped off- if so, terribly sorry- it happens from time to time and can be frustrating! If there's anything else you'd like to share, please let us know. In the meantime, please know how glad we are that you are with us. Warmly- Holly <a href='https://-migraine.com' target='_blank' rel='noopener noreferrer ugc'>-migraine.com</a> team.
dpasek Member
How do you qualify for disability with migraine in the first place? My searches yielded no results. I am now retired, but I would like to be able to claim a disability exemption on my tax forms, at the very least. I was diagnosed with migraine in 1995 and have been using Imitrex ever since, always carrying a couple of doses in my pocket. More recently, I have been using Ajovy in attempt to reduce the frequency of my frequent episodic migraines, and have had some success with it. So, how do I proceed with an attempt to get disability certification? Any suggestions appreciated.
1. Cheryl Picerno Moderator
 <inline-mention username="dpasek" user-id="3725273"/>, what is also helpful with filing for disability is to have your condition(s) well documented. Many people suffering from migraine disease also have other conditions that exist. The combination of these can strengthen your application for disability. Documentation is the key to a good foundation. If you apply for disability in the US and get denied, you can always seek out a seasoned disability attorney to represent you and your interests. Let us know how you are doing moving forward. Warmly, Cheryl <a href='https://migraine.com' target='_blank'>migraine.com</a> team
2. Holly Harding Moderator & Contributor
 <inline-mention username="dpasek" user-id="3725273"/> this is a good question. I am unclear as to whether or not and, if so, how you would qualify for disability exemption on your taxes unless you went through the process of filing for disability officially. If you are already, retired, it may be difficult to attain disability status, but I am not clear on this. I think probably the first place to start would be to ask your doctor for his or her opinion on this, as, at least in my experience, your doctor really needs to have your back on the application process for disability. My colleagues have also sent you some good resources to review. Let us know what you find. Another option would be to consult with a disability lawyer to ask for their opinion, but I think I better first stop would be with your doctor. Glad you’re with us. Warmly- Holly <a href='https://-migraine.com' target='_blank' rel='noopener noreferrer ugc'>-migraine.com</a> team
dpasek Member
TY Holly, I will check with my migraine specialist neurologist to see if he has a handle on the necessary procedures.
1. Holly Harding Moderator & Contributor
 <inline-mention username="dpasek" user-id="3725273"/> Sounds good. Please keep us updated. I'd like to learn from you on this. Thanks! Warmly- Holly <a href='https://-migraine.com' target='_blank' rel='noopener noreferrer ugc'>-migraine.com</a> team. 
2. Melissa Arnold Community Admin
 <inline-mention username="dpasek" user-id="3725273"/> Hi! Were you able to reach out to your doctor? I'm curious to hear how the experience went. I (unsuccessfully) applied for disability several years ago and having a care team that not only understands your situation but is able to *articulate* it and advocate for you is so key. Wishing you all the best and a successful outcome! -Melissa, <a href='https://migraine.com' target='_blank'>migraine.com</a> team
barbebabe1 Member
I got my disability recertification request last month, 13 months after a nearly 3 year legal battle with multiple conditions while I was out of state receiving care. This unfortunately left me with only 6 days to fill out the form that took months to fill out with my attorney's help before. I definitely have been on pins and needles even though I have seen the same providers and they have over 25 years of medical records and 5 employers terminating me, proving my disabilities. This has been the most disheartening experience because anyone who has met me has seen my allergic reactions or my crippling EDS or a migraine where I can't even answer the phone or lift my head. The bureaucrats just need some pictures or a video or 10 minutes with me at home to know this this will never improve. The psychological impact of the government and every new physician telling me I can't possibly in pain 9/10 day in day out is almost as damaging to my hope as dealing with chronic pain. Maybe this will be my last reevaluation or maybe I will have to move back to my last state where I could actually acquire a SSA attorney. Keep me in your thoughts because I seem to always get the worst possible outcome. 
1. DonnaFA Member
 Hi @barbebabe1, I'm thinking about you and sending positive energy your way. Are there no SSA attorney's where you currently live? It's crazy that you would have to move just to acquire help to get a benefit for which you are qualified. I don't know if this is helpful, but I did find a source that says you can use a lawyer from another state to represent you: https://www.disability-benefits-help.org/ask-an-attorney/hire-an-attorney-other-state#:~:text=The%20short%20answer%20to%20this,in%20the%20Social%20Security%20claim. - Sending lots of (((hugs))), Donna (team member)
2. Holly Harding Moderator & Contributor
 <inline-mention username="barbebabe1" user-id="3678634"/> Oh dear. I'm definitely thinking of you and so sorry you are up for a re-evaluation so soon after fighting so hard to secure coverage. I think it's hard not to take these evaluations personally. While it is all (and only) about money for them, it feels as if we are being questioned - disbelieved - or accused of faking. An awful feeling. As you said, anyone who really knows you, knows what you are up against. The emotional (and as you said, psychological) impact of this dynamic is incredibly stressful and painful. Terrible that they've left you with so little time to respond properly. We are absolutely thinking of you and holding you in our hearts. Please let us know how this process unfolds for you. In the meantime, please turn to us for support and compassion as you await the outcome. We are here for you, 1000%. Warmly- Holly <a href='https://-migraine.com' target='_blank' rel='noopener noreferrer ugc'>-migraine.com</a> team.
margowhite Member
I started my disability journey in 2015 after being encouraged to go out on long term medical leave for years because of my almost daily migraines and other health issues. It took me 4 1/2 years, 2 denials, a lawyer, and appearing before a judge to finally get mine approved. It was rough, especially trying to care for a disabled daughter who would also need to be on disability but couldn't be until I was first because of state rules (and maybe federal, I really don't remember). When I finally got the judge to believe me, she only allowed me 6 months of back pay as she decided I hadn't done enough medically for my migraines and other conditions the entire time I was out of work attempting to get approved. Duh...without much of an insurance plan, you don't go to the doctor much. Anyway, I hadn't been approved for 8 months when my LTD company called for a review of my status. They have done so almost annually since then. Fortunately SS so far has not asked for a reevaluation yet, but I keep my LTD lawyers on retainer for just such an occurrence. I still have most of the same doctors so we dredge up the same forms every year and just update them and I keep copies of all my prior years' answers. I haven't had to do more than one additional phone interview. I agree with everyone that said impeccable record keeping is key! Best of luck to everyone trying to get past this hurdle and maintain it!
1. Holly Harding Moderator & Contributor
 <inline-mention username="margowhite" user-id="3819487"/> - Thank you so much for sharing some of your migraine and related disability journey. You have been through so much and I'm glad, after all of the challenges, to hear you were granted support. I will say, as someone who has been navigating both SSDI and private disability plans for years- you are not alone in the requests to justify continuance of coverage. I hear from SSDI at least once a year to ask for an updated evaluation (doctor records, quality of life narratives, lists of medications, etc). Private disability asks for more frequent evaluations (as you outline above). At least twice a year, if not quarterly, I am asked to complete multiple questionnaires and to submit similar paperwork required by SSDI. Only recently (for the first time in over a decade) was I asked to see an "independent" doctor - and later learned this move was the tip of the iceberg of a process that my private disability insurer required. This led to my losing and then regaining coverage after a year of compiling an appeal with a lawyer who specializes in migraine disability. Even though I've received multiple requests for paperwork and evaluation for years, I never get used to it - and now have a bit of PTSD from this latest chapter. I hope for you that the evaluation process will be smooth and not dramatic. We are here for you to provide support and information whenever you need it. Keeping a lawyer on retainer is a brilliant move, by the way. So glad you're with us and again thank you for sharing your well-earned wisdom with us! Warmly- Holly <a href='https://-migraine.com' target='_blank' rel='noopener noreferrer ugc'>-migraine.com</a> team