r/SSDI • • 2d ago

weekly support megathread Weekly Support Megathread

2 Upvotes

Because of a rule change stating that posts must contain a question, we will allow approval/supportive posts in the form of a weekly megathread instead. You will also be able to view past megathreads by clicking on the user appropriate user flair (weekly support megathread). Feel free to talk about approvals, denials, experiences with the process, cdrs, etc.


r/SSDI • • Aug 14 '26

weekly support megathread Weekly Support Megathread

5 Upvotes

Because of a rule change stating that posts must contain a question, we will allow approval/supportive posts in the form of a weekly megathread instead. You will also be able to view past megathreads by clicking on the user appropriate user flair (weekly support megathread). Feel free to talk about approvals, denials, experiences with the process, cdrs, etc.


r/SSDI • • 9h ago

Approved for SSDI benefits last month - Schizophrenia diagnosis age 36

17 Upvotes

I am diagnosed with schizophrenia and got approved for both SSI and SSDI after my first attempt applying. It took a year to get approved since I first started the process through CBEST. I was convinced I wasn’t going to get approved because I was being lazy and didn’t get my hospital records or my psych ward and rehab records. I simply completed all paperwork and had multiple phone interviews and an in person interview. I am getting dual benefits. I’m receiving both SSDI and SSI. I just received my first SSI payment for $3,701.82. I believe that’s a lump sum which would mean that I’ll be getting $308.49 SSI a month because my backpay is 12 months. SSDI I’ll be receiving starting October 21st.

The issue I’m having is on SSI you’re not allowed to have more than $2,000 of assets and I already have over $5,000 in my checking account. They allegedly give you nine months to spend down your backpay but I can’t imagine I’ll be spending that much. I currently don’t have to pay rent and I have no real bills. So I’m going to be accumulating all this money. Especially when I get around $13,000 of SSDI backpay. What should I do with all this excess money? Just pull out cash from the bank account and keep it hidden in my underwear drawer at home? Any suggestions?

Also I can answer anyone’s questions if you’re trying to get benefits yourself. I can give you tips. I did not use a lawyer but had a case worker helping me.


r/SSDI • • 13h ago

Denied again!

27 Upvotes

File was sent to Federal review and I was denied. There are no words for the amount of sadness I feel right now. Literally sick to my stomach! Last option is to go to a Judge. My lawyer and everyone I have talked to, have said I have a strong case. My Cath from 3 weeks ago showed LBBB and Microcardiovascular spasms in real time. What do I do??? My bills are way behind. Risking losing my car, my house, and everything I worked so hard to build my entire life. Worked 2-3 jobs, raised my kids, and now this? I need help!


r/SSDI • • 10h ago

20M, on disability and dialysis, and struggling to survive. Should I get a full-time job?

4 Upvotes

Hey guys, I’m a 20M, and I could really use some advice.

I was diagnosed with FSGS in 2022 when I was 16 and got approved for disability around that time. Before my health got worse, I was working all the time. Then, in June of last year, I had to start dialysis at 19.

I live on my own in Texas, and my disability check is $994 a month. My rent is $1,000, so I literally can’t even cover that without borrowing money. I have to borrow money for food, my phone bill, and pretty much everything else.

I’ve been in my apartment for four months, and I still barely have anything for it. Some days, I go hungry because I can’t afford food. I can’t afford haircuts, new clothes, or even a car. Honestly, it’s depressing. I’m only 20, and I feel like I’m barely surviving instead of actually living.

I’ve been picking up shifts at my local expo center here and there, usually 1–2 shifts every other week. The shifts are 10+ hours long, and surprisingly, I’ve been handling them pretty well despite being on dialysis.

For the most part, dialysis doesn’t make me feel too bad unless I have a lot of extra fluid on me and they have to take a lot off during one session. I feel like being young and not having other major health issues might work in my favor when it comes to working.

I talked to my mom about getting a full-time job, but she doesn't recommend it. I understand where she’s coming from, but at the same time, I can’t keep living like this. I want to be able to afford groceries without worrying about whether I’ll have enough money left for other bills. I want to buy a car, furnish my apartment, get haircuts, buy clothes, and just enjoy being 20.

I don't want to depend on disability forever if there's a way for me to work and support myself, but I'm also worried about losing my benefits and health insurance since dialysis is something I have to do to survive.

Has anyone here been in a similar situation?

I’m not trying to do anything reckless with my health. I just want a chance to live a normal life instead of struggling to afford the bare minimum every month.

Any advice or personal experiences would be appreciated.


r/SSDI • • 7h ago

Disability update report?

2 Upvotes

Hi. I have received SSDI since 2021. I’ve received a “disability update report” demand from SSA, asking me to document my medical visits, hospitalizations, and “remarks” from Oct 2024 until now.

I am incredibly medically complex and see a lot of doctors. And they’re scattered across 3 different medical systems so my records are not centralized. Does anyone know how detailed you’re supposed to be with this?

I’ve had countless doctor appts in the last 2 years. My primary disability is a traumatic brain injury and compiling all of this information is a nightmarish thought.

How do you go about this?


r/SSDI • • 15h ago

Disabled adult child w/ schizoaffective disorder need advice

5 Upvotes

My brother is in his mid 40s. He has been living with our parents and has only left home for a short period. He first displayed symptoms around 17/18 and he has been a dependent living at home the entire time. He never worked than 15 hours a week when he was able to work. He has been unemployed a majority of the time due to the debilitating nature of his disease. He is on SSI, but I don’t know for how long. He is unable to keep a job and my parents are aging (both are on social security, retired). We need to find a solution because they will not be around forever to provide. Does anyone have experience in getting Disabled Adult Child assistance? I don’t know how much documentation we have that proves when he began being disabled, but he dropped out of high school as a result, never completed a GED either. I feel like i am at my wits end. $900 a month isn’t enough to even pay for a 1 bedroom studio here. We can’t financially do much else.


r/SSDI • • 15h ago

Federal remand hearing

4 Upvotes

For those who pushed their case to the federal court and had it remanded. Then had your remand hearing with an ALJ afterwards. How long did it take for you to hear a decision?

(Yes Im aware it takes a while and depending on the state)

Just curious what your wait time was and what the decision ended up being.


r/SSDI • • 1d ago

Alj asked one hypothetical question??

20 Upvotes

Had my hearing yesterday, the judge was pretty cool and when it came to asking hypothetical questions, he only asked her one question in which she stated I can do “No Jobs”…then he concluded the hearing and said to look out for his decision in the mail, is this normal? Shortly after, my attorney called me to let me know I did a great job and that the judge usually asks 4 hypothetical questions and only asked me one. Does this sound like a “Fully Favorable” situation?


r/SSDI • • 14h ago

So is this right or wrong?

1 Upvotes

Currently on Step 3, and I received this letter along with my representative. I let them know that I received it, and what I could do to help get things together so we could get the medical evidence in, and all relevant evidence is up to date and case ready to be scheduled. I also asked them about the last paragraph, so the local office could review the case to see if an on the record decision. They advised me that that's not the way its handled in my office, and they would begin working on things, but could not provide me the list of exhibits in the file, and that an OTR decision could not be requested until a judge was assigned. They also stated that it was their discretion whether or not to even request an OTR decision, and they haven't decided on that yet.

Am I wrong thinking their communication is completely wrong? The letter below was from our specific Hearing Office Director and mailed from our OHO. I sincerely doubt that they would send this if this is not how they handle things.

---------------------------------------------

Proposed exhibits in the above referenced file are now ready for your review. Please log into www.ssa.gov/ar/ to view the proposed exhibits which are shown in the exhibit list tab. Further processing of this case requires the following actions on your part:

1.

It is the claimant's responsibility to provide medical evidence showing that he/she has an impairment(s) and how severe it is during the time he or she alleges disability. In order to expedite processing of this claim, you should submit the following information:

a.

All medical records (not duplicates) from one year prior to the alleged onset date to the present and any other relevant medical, school or other records not already in file.

b.

Completed enclosed questionnaire(s), and signed Authorization to Disclose Information (enclosed).

2.

Advise us when all relevant evidence is up-to-date and the case is ready to be scheduled.

Please submit all evidence using one of the three electronic methods:

As soon as you submit the foregoing, we will review your case to determine if we can make a fully favorable decision without holding a hearing. If we cannot make a decision on the record, we will schedule your case for hearing. Therefore, it is to your advantage to submit your evidence as soon as possible.

If you have any questions, please contact the number listed above.

Sincerely,

xxxx

Hearing Office Director


r/SSDI • • 20h ago

Medicare and Medicaid Premiums

2 Upvotes

Does Social Security automatically set you up with the medical insurance? I have health insurance through my husband so I don't need to have any deductions for medical. How do I let them know so it doeaffect the amount of my backpay or monthly benefits going forward?

(I have SSDI only)


r/SSDI • • 1d ago

Alj coming up

2 Upvotes

My date is coming next month and I’m scared cause my neurologist couldn’t get me in til a day after . I have Afib, leg swelling , edema I have to elevate my leg, aphasia and memory loss along with other things . My lawyer is prepping me a few days before but is there anything else ? Could anyone give me any advice ? Tia


r/SSDI • • 1d ago

Reconsideration Decision Made In ~A Week

1 Upvotes

First of all, to provide some context, I have two cases running at the same time. The first case was my original case from January 2022 that went to Federal Court and was sent back by Federal Court to be looked at by the judge. It’s currently in limbo at the appeals counsel (that’s a whole other can of worms I won’t get into). The second case is the new application I submitted after being denied by the appeals counsel on my first application and it was being sent to Federal Court.

I honestly thought I was going to win at the first level of my new application because my medical reviewer was AMAZING. She called me and talked to me for a couple HOURS and reassured me that we were going to try to get me approved without having to go to the ALJ level again. So, imagine my surprise when I got the denial.

So, I submitted my reconsideration appeal immediately after that decision in July. The portal said that it was given to a medical examiner in August, but I never got any paperwork telling me who it was assigned to or anything, which I had in previous appeals. So, in the beginning of October, I called DDS directly and asked if they could give me the name of my medical examiner so I could send them updated info (because I had been given news that I will be having a permanently disabling surgery in the spring in which I was already given a handicap tag for because my mobility has been greatly effected already). They told me that an examiner had not been assigned yet. Then, on October 8th, I got on the portal and it showed that a decision had been made and it had already been sent to my local office for finalization.

So, this tells me that the examiner took less than a week to review my case and didn’t ask for any new information before making the decision?!

If the decision is an approval, that’s great, but if it’s a denial, that doesn’t make any sense. I really don’t expect an approval. I have kind of been prepared to go to the ALJ level again for this one. But, I hate that it seems my case is just being glossed over. This is my LIFE.

Anyone have any experience with this? I swear I remember my reconsideration being very similar to the first application last time. This just seems so odd. But, I guess I should be happy that it went by fairly quickly and I can hopefully get in with the ALJ by June.

Edited to add: I misspoke. My initial application was 01/2023 with my last day of working being 09/2022. My DLI is 12/2027. So, that shouldn’t be the issue.

Also, not sure why my post is being downvoted considering I’m just asking a question and giving information about my actual case. No need to ruin my karma for asking a question about an already difficult problem in a group intended to ask questions about this stuff.


r/SSDI • • 1d ago

SSA Representative Said My SSDI Claim Was “Allowed,” Then Changed Her Answer. Has Anyone Experienced This?

2 Upvotes

I’m currently at Step 3 of my SSDI application and had a confusing conversation with my local Social Security office. I’m wondering if anyone has experienced something similar, especially anyone who works for SSA or DDS.

I called to check on my application. At the beginning of the conversation, the representative told me the only thing they were waiting on was my workers’ compensation payment history. She explained that SSA requests this information before a disability determination so they can calculate any necessary offset if approved.

She then told me she was logging into the DDS system they use to look at disability claims. She started reviewing my file, identifying documents I had submitted, and confirmed that all requested medical records had been received.

Then, completely out of the blue, she said, “It says allowed.”

I asked, “Does that mean I’m approved?”

She said yes, it said allowed.

I even asked whether I still needed to submit a questionnaire that was showing outstanding, and she agreed that I wouldn’t need to since I was approved.

Then, without me questioning her answer, she said she wanted to check something else just to make sure.

After looking at another screen for about a minute, she apologized and said my claim was actually still pending. When I asked what she had seen that said allowed, she couldn’t really explain it. She just said she wasn’t sure what she had been looking at.

My online portal still shows Step 3.

My questions are:

  1. Does the DDS system show an “allowed” status before a determination is officially finalized?

  2. Could she have seen a favorable medical determination while the overall SSA claim was still pending?

  3. Has anyone had a representative tell them their claim was allowed and then change their answer to pending?

  4. Does SSA typically request workers’ compensation payment histories before DDS has made its medical decision?

I’m not assuming I’ve been approved. I’m just curious what she could have been looking at, especially since she was reviewing my actual DDS records when she said it.

I’d really appreciate hearing from anyone who’s experienced something similar or understands how the internal SSA/DDS systems work.


r/SSDI • • 1d ago

SSDI Cessation - Appealed, next steps?

10 Upvotes

I have been on SSDI since 2018 due to mental health and Multiple Sclerosis. I have been working part time since 2023, but during 2024 and 2025 I went over SGA a few times.

In September I received a letter saying I was going to be ceased because of this- however, the numbers they sent for earnings were wildly wrong - of the ~18 months they had listed, their calculations were incorrect on 17 of them. I submitted every single paystub for those months via mail (over 100 pages) to them in late September.

Today I got the dreaded Notice of Disability Cessation - as far as I can tell, they did not look at a single page of my submitted documents. I no longer make over SGA, nor will I.

I have filed both the Reconsideration form (632BK) and the Waiver for Overpayment forms.

Monday, I am going to head to the local SSA office and talk to an actual human face to face.

However, I have no idea what my next steps are- the letter says I'll still have potential payments until the end of my Extended Eligibility phase in 2028. It also says I'll get paid for months where I don;t go over SGA- however I can't find the Submit Paystub option anymore, so I don't even know how to tell them anything.

I am at a loss, because while I did receive SOME overpayment months, their calculations were laughably wrong and I did NOT go over SGA for most of the months indicated, nor have I since this cessation nonsense started.

What other steps do I need to take? Expedited reinstatement? I have NO IDEA.


r/SSDI • • 1d ago

Between 2nd denial and ALJ?

2 Upvotes

Does SSA ever approve SSDI right before the hearing, or do you always have to go to a hearing after being denied at 2nd step?


r/SSDI • • 1d ago

Converting from DAC to own work record

2 Upvotes

I have been receiving DAC for a long time - since I was about 17, for blindness. I am 37 now, and have been working enough to receive insured status on my own work record. The amount is slightly higher than my DAC benefits. What is the process for converting from DAC to my own work record? Is it like filing a completely new disability claim? Will the fact I was able to do some work (albeit under SGA) work against me in filing a claim under my own work history?

The primary reason I want to do this is my understanding of DAC benefits - they would be discontinued if I married my long term partner, whereas my own SSDI benefits would not, should I switch to receiving benefits under that record.


r/SSDI • • 1d ago

Ce appointment no longer needed?

3 Upvotes

A relative of mine called me (they were listed as like a witness of my condition) to let me know they received a phone call and voicemail from DDS to say I do not need to go to the CE appointment because they received sufficient information from my doctor that it is no longer needed. Is that normal and a good sign?

I recently changed doctors and she makes more in depth notes of my condition then my previous doctor. Could it be because she was so thorough? I also call DDS and leave a voicemail to call me back and confirm that information.


r/SSDI • • 1d ago

SSA-455 OCR: What are some of the medical abbreviations used?

3 Upvotes

I've been trying to find some good examples that can be summarized in the 16 character limit provided for medical visit reason but everything sounds repetitive, bland and very basic. For those who have had a successful review, what descriptions did you provide?

Also, did you return by mail or submit online?


r/SSDI • • 2d ago

ABLE account

5 Upvotes

Howdy yall,

New question. Now that Ive spent what I need and want from the back pay I want to put some away in a savings account so I can eventually buy my own house.

Anyone have any experience with ABLE accounts?


r/SSDI • • 1d ago

Functionality Report - Is this what they are wanting? Do you think I have a high chance? I am living in a nightmare.

0 Upvotes

Please note- I wrote my own answers but had chat gbt help me organize it and am verbally reading it over the phone to my lawyer. I'm aware you can't type and submit things.

SSA-3373 — Adult Function Report
SECTION B — INFORMATION ABOUT MY CONDITIONS
5. How do your illnesses, injuries, or conditions limit your ability to work?
My conditions include Persistent Postural-Perceptual Dizziness (PPPD), Functional Neurological Disorder (FND), POTS, left vestibular hypofunction, central vestibular dysfunction, visual-vestibular integration dysfunction, visual-motion sensitivity, vestibular migraines, depression, anxiety, panic attacks, PTSD related to medical trauma and severe childhood trauma and abuse, ADHD, and memory and information-processing difficulties.
My symptoms were triggered after significant cardiac medical events in 2026, including two catheter ablation procedures for a severe heart rhythm problem. During an attempted procedure, my blood pressure dropped to a life-threatening level. The doctor told me I almost died. Although my heart rhythm problem was treated, I continue to experience disabling neurological, vestibular, cognitive, and physical and systematic issues and symptoms.
Balance and physical symptoms: I experience near-constant rocking, bobbing, swaying, bouncing, and floating sensations, even when sitting still. It feels like I am on a boat, walking on marshmallows, or standing on a floor that is breathing, dropping, or moving beneath me. I feel pulled forward, backward, or sideways, and sometimes feel as though I am being lifted out of my body or squashed. My legs feel like noodles, and I often feel as though my brain is not communicating properly with the rest of my body. Sitting in a chair can feel like falling or being rocked backward, and I have sometimes fallen out of a chair. I can stand for only about 2–3 minutes and can walk approximately 50 feet before I need to stop because of dizziness, lightheadedness, imbalance, or disorientation. I have to grab onto walls or furniture to steady myself. I have passed out several times, including after standing up, and have experienced my vision going black or completely white. During a recent attempt to walk outside, I developed vertigo, my vision went white, and I fell to the ground.
POTS also causes heart racing and palpitations when I stand, lightheadedness, and symptoms that can worsen after meals or with heat. I overheat easily and experience significant exhaustion, sometimes feeling as though I could fall asleep while sitting upright. I also experience persistent pressure in my head, which worsens with weather changes, and internal vibrations that feel like my entire body is shaking and interrupt my thoughts. Some days, the left side of my body feels weaker or less coordinated than the right. My symptoms can make me feel as though my body is shutting down.
Visual and sensory processing: My eyes, ears, and brain often seem unable to process information together. Objects can appear to move, ripple, twist, or change color. The floor can appear to drop, and busy environments make me disoriented. Bright lights, screens, walking, and outdoor environments worsen my symptoms. I cannot tolerate grocery stores because the walls appear to ripple and the floor feels like it is moving. Reading can become impossible because the letters appear to move, but I cannot process the words. Writing is difficult because of blurred vision and losing my thoughts. Normal conversations can cause head pressure, ringing-like sensations, floating, dizziness, and confusion. I often need people to whisper because normal speaking volume can overwhelm my brain. Vestibular migraines can occur unpredictably and have caused temporary vision loss in my right eye and changes in how I see colors.
Cognitive symptoms and FND: I experience daily derealization, in which the world feels unreal or dreamlike and I feel disconnected from my body or surroundings. Sometimes I feel as though I am not alive or have lifted out of my body. This is frightening and makes it difficult to orient myself to what is happening around me. I frequently forget what I am doing, repeat questions or information, lose my train of thought mid-sentence, mix up dates, forget appointments, and struggle to understand conversations. I can hear someone speaking without being able to process their words. I struggle with written and spoken instructions, concentration, memory, attention, and completing tasks. Internal vibrations and sensory overload can interrupt my thinking entirely. Some days I feel too disoriented or mentally overwhelmed to organize the steps needed to seek help.
Mental health and sleep: I experience anxiety, panic attacks, depression, rumination, daily flashbacks related to medical trauma, and fear that I am dying or that another medical episode will occur. Stress and loud or emotionally intense situations worsen my symptoms. I have experienced a seizure-like episode that my neurologist has discussed in connection with FND, and I am afraid of having another. I sleep poorly, experience nightmares and flashbacks, and wake frequently feeling exhausted. My depression has made life feel meaningless, and I have experienced suicidal thoughts almost daily.
These symptoms affect my ability to sit, stand, walk, use a computer, read, communicate, concentrate, remember instructions, and safely complete tasks. I spend much of my time at home or in bed. My symptoms fluctuate unpredictably, and I cannot reliably maintain attendance, concentration, pace, or productivity throughout a workday. A sedentary job would also be difficult because sitting, screens, reading, conversations, and cognitive demands can trigger or worsen my symptoms. I dedicate substantial time to medical appointments, therapy, vestibular rehabilitation, prescribed exercises, and coping techniques in an effort to improve, but I remain significantly limited.
SECTION C — INFORMATION ABOUT DAILY ACTIVITIES
6. Describe what you do from the time you wake up until going to bed.
I sleep poorly and wake throughout the night due to nightmares, flashbacks, anxiety, migraines, and physical symptoms. At least four days out of seven, sometimes more, I wake feeling as though my body has given out. I may have to remain sitting upright for nearly an hour before I can get up to use the bathroom. I often wake exhausted, frightened, and disoriented, sometimes with double vision.
As soon as I get up, I experience rocking, bobbing, floating, and sensations that the floor is moving. I have to hold onto walls or furniture while walking to the bathroom. Even sitting on the toilet can feel like I am bouncing or being shaken. I often return to bed because I feel lightheaded, unstable, or overwhelmed.
I attempt to prepare a simple breakfast while sitting down, but the process takes over 45 minutes and requires breaks. I make boiled eggs and use timers because I can forget what I am doing. I sometimes need to lie down while the food cooks. Even after eating, I may experience a racing heart, lightheadedness, and exhaustion. If symptoms are too severe, I cannot prepare food and must wait for help. My boyfriend handles grocery shopping and helps with lunch and dinner.
Most of my day is spent resting in bed or sitting with my dog, trying to manage symptoms. I practice vestibular exercises at home when I can tolerate them, along with prescribed visual exercises, somatic tracking, meditation, and prayer. I attend virtual intensive outpatient therapy through Charlie Health and participate in individual therapy. I sometimes have to lie down during therapy because I feel as though I am being shaken or moving violently. Severe symptoms and exhaustion can make it difficult to participate.
I cannot tolerate screens or reading for long. After about 5–10 minutes of reading, words may blur or appear to move. I often listen to YouTube or audio with my eyes closed because visuals and normal sound levels can overwhelm me. Friends sometimes call, but I decline because I can hear their voices without being able to understand their words, and conversations can trigger dizziness, head pressure, or migraines.
I rarely shower without difficulty. The floor feels as though it is moving, my heart may race, and I fear falling or passing out. I have fallen before and need a shower chair or help. I may go a week without showering when symptoms are severe or my boyfriend showers me. My boyfriend drives me to medical appointments because I cannot reliably travel or walk safely alone.
By the afternoon and evening, I am often exhausted, dizzy, nauseated, and unable to complete ordinary activities. My boyfriend helps with dinner and household responsibilities. I spend much of the evening waiting to go to bed because I am exhausted and want relief from the symptoms. Before bed, I try to pray, meditate, or write in my gratitude journal, although blurred vision and forgetting my thoughts make writing difficult.
I often lie awake tossing and turning, wondering whether I will improve and how I will survive another day of symptoms. My days revolve around resting, managing symptoms, treatment, and attempting basic activities. I cannot predict when I will need to stop an activity or lie down.
7. Do you take care of anyone else?
No. I am unable to reliably care for another person because of my own physical and cognitive limitations.
8. Do you take care of pets or other animals?
I spend time with my dog, but I cannot reliably manage the physical responsibilities of pet care because standing and walking are unsafe for me. My ability to help varies with my symptoms.
9. Does anyone help you care for other people or animals?
My boyfriend helps with household responsibilities and activities I cannot safely complete. He also assists me with transportation and personal care when needed.
10. What were you able to do before your conditions that you cannot do now?
Before becoming ill, I was independent, active, organized, and career-focused. I woke up around 5:45 a.m., exercised for an hour, walked my dog, cooked breakfast, drove to work early, and worked in corporate leadership positions. I managed projects, remembered information, followed up with people, maintained schedules, and often worked beyond my scheduled hours. I attended software engineering school from 7:00 to 10:30 p.m. after work. I cooked, cleaned, did laundry, grocery shopped, read, studied, socialized with friends, and enjoyed the beach, pool, running, walking, dancing, snorkeling, and day trips.
Now, I cannot work or attend school because I struggle to process information, use screens, remember instructions, communicate, and remain upright and focused. I can stand for only 2–3 minutes and walk approximately 50 feet before needing to stop. I cannot safely drive, shop independently, maintain my space, or reliably prepare meals. I have stopped coding, running, snorkeling, and taking day trips. Reading, writing, and socializing are limited by visual disturbances, dizziness, sensory overload, and cognitive difficulties.
My memory has changed significantly. I forget conversations, appointments, and tasks, even when I write them down or receive reminders. I sometimes lose track of what I am doing in the middle of a simple activity. Derealization makes my surroundings feel unreal and interferes with my ability to feel oriented and process what is happening. My depression has also made life feel meaningless. I worked hard to build an independent life, and I am trying to improve through treatment, but I cannot function safely or consistently as I did before.
11. Do your conditions affect your sleep?
Yes. I go to bed around 10:30 p.m., but I often lie awake crying, worrying, and tossing and turning because of my symptoms and fear about my future. I experience nightmares, daily medical-trauma flashbacks, and frequent awakenings. My boyfriend has told me that I have woken up choking and appearing not to breathe. I also experience migraines and wake with double vision or confusion. Walking to the bathroom at night is difficult because of dizziness and balance problems, and I have fallen. Even when I sleep, I do not feel rested. At least four days a week, sometimes more, I wake feeling profoundly exhausted and need to remain sitting upright for nearly an hour before I can get up.
12. PERSONAL CARE
a. Dressing, bathing, hair care, feeding, using the toilet, and other personal care
Dressing: Getting dressed makes me dizzy and exhausted. I sometimes need to stop and sit because I feel unsteady or pulled in different directions.

Bathing: I fear falling because the floor feels like it is moving. I have fallen before, sometimes need a shower chair or help, and may go a week without showering when symptoms are severe.

Hair care and shaving: These tasks require coordination and head movements that worsen dizziness. I usually manage my hair about once a week and shaving about once every two weeks.

Feeding myself: I can sometimes prepare a simple breakfast while seated, but it takes over 45 minutes with breaks. I sometimes skip meals or need help with lunch and dinner because of dizziness, exhaustion, confusion, and heart racing.

Using the toilet: I can generally use the toilet independently, but I feel rocking and bouncing even while sitting. I hold onto things when walking to and from the bathroom because I fear falling.

Other: Daily derealization, memory problems, blurred vision, exhaustion, and disorientation make personal care difficult and unpredictable. I often need to sit or lie down between activities.

b. Do you need reminders for personal needs and grooming?
Yes. I use phone reminders and a calendar, and my boyfriend reminds me about appointments and responsibilities. Even with reminders, I confuse dates, forget appointments, or miss them because of memory problems and disorientation. I sometimes forget to shower when symptoms are severe.
c. Do you need help or reminders taking medicine?
Yes. I have placed medication in front of me and then forgotten within minutes whether I took it. My boyfriend has had to count pills to check whether I took the correct amount. He purchased and fills a seven-day pill organizer and reminds me to take my medication so I do not miss doses or accidentally take them twice.
13. MEALS
a. Do you prepare your own meals? How often? How long does it take?
I attempt to prepare a simple breakfast when symptoms allow, but it takes over 45 minutes and sometimes longer. I sit while preparing food, set timers, and lie down between steps because I can stand for only 2–3 minutes. I can forget what I am doing, lose track of cooking steps, or become too dizzy to continue. I sometimes cannot prepare breakfast at all. My boyfriend does the grocery shopping and helps with lunch and dinner.
Cooking used to be a passion. I enjoyed preparing healthy meals and shopping at farmers markets. Now, heat can worsen my heart racing, kitchen lights can aggravate my symptoms, and the moving-floor sensation makes cooking unsafe. I cannot reliably cook or wash dishes independently.
14. HOUSE AND YARD WORK
a–d. Chores, frequency, help needed, and why
I am unable to reliably perform household or yard work. I don’t attempt chores because standing, bending, reaching, and moving around worsen my dizziness, disorientation, and balance problems. I once tried washing dishes to regain some normalcy but became lightheaded and disoriented, so my boyfriend now washes them. I cannot maintain a regular household routine and depend on him to handle these responsibilities.
15. GETTING AROUND
a. How often do you go outside?
I rarely go outside, and I do not go out independently. Walking and visual stimulation make the ground feel as though it is moving. Sunlight and heat can worsen my symptoms and make my heart race. During a recent attempt to walk outside, I developed vertigo, my vision went white, and I fell to the ground. I try to attend church about once a week when able because my faith is important to me. My boyfriend drives me.
b. How do you travel?
I ride in a car driven by my boyfriend.
c. Can you go out alone?
No. I have fallen, passed out, and become severely disoriented. I cannot reliably walk safely or process my surroundings, so I need my boyfriend to accompany me.
d. Do you drive?
No. Rocking, dizziness, visual disturbances, migraines, spatial distortion, and difficulty processing my surroundings make driving unsafe at this time. My migraines can occur unpredictably and have caused temporary vision loss in my right eye and changes in color perception.
16. SHOPPING
a. How do you shop?
I do not shop in stores. I use talk and text on my phone  to prepare a shopping list for my boyfriend.
b–c. What do you shop for, how often, and how long does it take?
My boyfriend does the grocery shopping once a week using my list. Store lights and visual stimulation overwhelm me; aisles appear to ripple or breathe, and the floor feels as though it is moving or dropping like an elevator. I have tripped and had to sit on the floor in a store because I felt I would fall. I cannot tolerate grocery shopping safely or independently.
17. MONEY
a. Are you able to pay bills, count change, handle a savings account, and use a checkbook or money orders?
I can manage my savings account online only briefly. After about a minute of looking at the screen, the lettering may move, my vision blurs, and I become dizzy. I cannot reliably count change because I lose track of numbers and become disoriented. Writing checks or money orders is difficult because writing and looking at the page worsen my symptoms. My ability to manage money is limited by memory, concentration, visual processing, and screen intolerance.
18. HOBBIES AND INTERESTS
a–b. What are your hobbies, and how often can you do them?
I used to enjoy reading, journaling, poetry, coding, cooking, crime documentaries, podcasts, running, walking, snorkeling, and day trips. I now spend most of my time at home managing symptoms.
I can usually read for only 5–10 minutes before my vision blurs and the words appear to move. Journaling is difficult because of blurred vision and losing my thoughts mid-sentence. I no longer code or write poetry. I can sometimes listen to quiet audio, but speech and sound can become overwhelming. I pray and practice somatic tracking and vestibular or visual exercises when I can tolerate them.
c. How have these activities changed?
I can no longer participate in many activities I enjoyed. I stopped running, walking for exercise, snorkeling, taking day trips, coding, and cooking as I used to. Reading, writing, watching videos, and listening to audio are limited by dizziness, visual disturbances, migraines, fatigue, and difficulty processing information.
19. SOCIAL ACTIVITIES
a–b. How do you spend time with others, and how often?
I rarely socialize. I have friends who call or text, but I often decline calls or cannot respond to messages because screens worsen my symptoms. During conversations, I can hear voices without understanding the words. Normal speaking volume can overwhelm me, and talking can cause head pressure, dizziness, and migraines. I have become very isolated because interacting with others can be physically and mentally overwhelming.
c. Places you go regularly; reminders and accompaniment
I try to attend church about once a week when able. My boyfriend drives me and helps me walk inside. I previously passed out after standing at church, and he caught me. I am now afraid it will happen again. I need phone reminders, a calendar, and my boyfriend's help with appointments, but I still forget or confuse dates. I need someone to accompany me because of my balance problems and disorientation.
d. Problems getting along with others?
No. My social isolation is caused by my medical symptoms and difficulty processing conversations, not by problems getting along with people. I believe everyone deserves love despite what I go through.
e. Changes in social activities
Before becoming ill, I enjoyed coffee shops, seeing friends, meeting people, and going out. I now rarely leave home because of dizziness, visual disturbances, exhaustion, and difficulty processing conversations.
SECTION D — INFORMATION ABOUT ABILITIES
20. How do your conditions affect your abilities?
a. Abilities affected
Lifting: Lifting can make my heart race and worsen dizziness. I sometimes lose my grip or feel too unsteady to carry items safely.

Squatting and kneeling: These movements worsen my rocking and instability and make me feel as though I may fall.

Bending and reaching: These movements can cause disorientation, loss of balance, and a sensation of being pulled or moved.

Standing: I can stand for only about 2–3 minutes before becoming lightheaded, wobbly, or disoriented. I need to sit, lie down, or hold onto something.

Walking: I can walk approximately 50 feet before needing to stop. The ground feels as though it is moving or bouncing, my legs feel weak, and my heart may race. I need to hold onto things for support.

Sitting: Even while sitting still, I feel floating, rocking, bouncing, or being pushed backward. I have sometimes fallen out of a chair because I feel unstable.

Talking: I lose my train of thought and may forget what I was saying. Speaking can cause head pressure, floating sensations, and migraines. Loud voices can overwhelm me and trigger panic symptoms.

Hearing and understanding: I can hear speech but often cannot process the words. Over a recent three-week period, my boyfriend had to repeat himself multiple times on about 10 occasions because his words did not register.

Climbing stairs: I avoid stairs and use elevators when possible because stairs worsen dizziness, heart racing, and rocking sensations. I can continue feeling movement after I stop.

Seeing: Objects may appear to jump, ripple, twist, or blur. Bright lights worsen symptoms, and migraines can cause temporary vision loss in my right eye and color changes.

Memory: I forget appointments, conversations, dates, and where I put things. I repeat information and can confuse when events happened. Reminders do not always prevent me from forgetting.

Completing tasks: I become confused and forget what I am doing mid-task. On four occasions, I forgot how to finish preparing breakfast and had to stop to work out what I was doing.

Concentration: I can generally pay attention for about 5–10 minutes before symptoms, sensory overload, fatigue, or loss of focus interfere. Internal vibrations, derealization, and flashbacks can pull me away from the present.

Understanding and following instructions: I often need instructions repeated or explained differently. Written words can appear to move, and I may reread something about 10 times without processing or retaining it.

Using my hands: My hands sometimes shake, and some days my left side is weaker or less coordinated than my right.

Getting along with others: I have no difficulty getting along with people. My limitations come from symptoms, not interpersonal conflict.

Derealization affects many of these abilities because I can feel disconnected from my body and surroundings, as though I am in a dream. I sometimes struggle to recognize what is happening around me or to process information in real time. My eyes, ears, and speech can feel out of sync, making it difficult to understand conversations, navigate spaces, and complete tasks safely.
b. Right-handed or left-handed?
[Enter the correct answer.]
c. How far can you walk before needing to stop and rest?
Approximately 50 feet. I then need to stop because the ground feels as though it is moving, like I am on a boat, I become dizzy and unsteady, and my heart may race.
How long do you rest before resuming?
I generally need about 10 minutes of rest before attempting to walk again, although dizziness and movement sensations can continue. I may need to lie down and may not be able to resume the activity.
d. How long can you pay attention?
About 5–10 minutes at a time, depending on symptom severity. Dizziness, derealization, fatigue, visual stimulation, and difficulty processing speech interrupt my concentration.
e. Do you finish what you start?
No, not consistently. I have unfinished books, journals, and videos because visual stimulation and concentration difficulties force me to stop. I sometimes end conversations early because I become dizzy, floaty, nauseated, or unable to process speech. I also forget what I am doing in the middle of tasks.
f. How well do you follow written instructions?
I struggle. I may reread instructions about 10 times and still have difficulty retaining or understanding them. Letters can appear to move, and blurred vision and derealization make reading difficult.
g. How well do you follow spoken instructions?
I struggle to process spoken instructions and often need repetition or rewording. Approximately 7 out of 10 times, I may hear someone speaking but have difficulty understanding what they are telling me when symptoms are active. I also experience lapses of awareness in which I feel disconnected from what is happening and lose track of time.
h. How well do you get along with authority figures?
I am respectful and have no difficulty getting along with authority figures.
i. Have you been fired or laid off because of problems getting along with others?
No.
j. How well do you handle stress?
I used to manage stress well. Now, stress worsens my dizziness, rocking, bobbing, and swaying, and can trigger panic symptoms. During a prolonged, loud family altercation, I experienced a seizure-like episode that my neurologist has discussed in connection with FND. I struggle to manage stressful situations without worsening symptoms.
k. How well do you handle changes in routine?
My symptoms fluctuate unpredictably, so I cannot maintain a consistent schedule. I may need to cancel, stop, or postpone activities because of dizziness, exhaustion, disorientation, migraines, or cognitive difficulties.
l. Have you noticed unusual behavior or fears?
Yes. I am frequently afraid that I am dying or that another episode will occur. Derealization makes the world feel unreal, and I sometimes touch objects to reassure myself they are real. I have significant anxiety, panic attacks, flashbacks, and depression related to my symptoms and medical trauma.
21. Do you use any of the listed aids?
Glasses/contact lenses: Yes. I use prescription glasses or contact lenses for astigmatism. I cannot see adequately without them, and I continue to experience blurred vision and other visual disturbances even with correction.
Other: I use a handheld vagus nerve stimulator recommended by my neurologist and Brock strings prescribed for visual coordination exercises.
Which were prescribed or recommended by a doctor, and when?
My glasses/contact lenses were prescribed by my eye doctor. My neurologist recommended the vagus nerve stimulator in 2026 and prescribed Brock strings.
When do you use them?
I wear my glasses or contacts daily. I use the vagus nerve stimulator once daily and the Brock strings as directed, as tolerated.
22. Do you take medicines, and do they cause side effects?
Yes.
Lexapro 20 mg: Excessive sleepiness, lethargy, dizziness, and vomiting. Prescribed to help treat my depression and symptoms associated with PPPD and FND.

Ajovy: Flu-like symptoms for the first few days after the injection.

Ativan, as needed for panic attacks: Significant drowsiness that can make me fall asleep.

SECTION E — REMARKS
My health journey has been long, frightening, and life-changing. After a major thyroid shift following a misdiagnosis of hyperthyroidism, I began experiencing episodes of SVT in which my heart rate would reach approximately 200 beats per minute ten or more times a day. I often felt like I was dying and lived with constant fear about what was happening to my body. I eventually underwent two cardiac catheter ablation procedures in 2026. During this experience, I was told that I had nearly died during one of the procedures. These events were deeply traumatic and marked a major turning point in my life.
Since then, I have gone from doctor to doctor and specialist to specialist, trying to understand what was happening to me and find answers. Despite continuing to seek medical care and treatment, my health struggles have taken away so much of the life I worked hard to build. I lost my last two jobs because of my health, lost my apartment, and lost much of my independence. My life today is drastically different from the active, independent life I had before.
I continue to pursue treatment and do my best to navigate circumstances I never expected to face. This journey has affected me physically and emotionally in ways I never imagined. I respectfully ask that my application be considered with an understanding of the medical experiences I have endured and how profoundly they have changed my life.


r/SSDI • • 2d ago

Anyone waiting in IL nonmedical?

0 Upvotes

Hi everybody. I'm in nonmedical review, portal step 4. I've been here since I cleared FQR with my medical approval on Sep 29. Is anyone else in IL in the same placs- how long have you been wsiting or recently waited? Thanks.


r/SSDI • • 2d ago

My attorney isn't replying to my question about whether or not they're able/willing to request an otr

0 Upvotes

I'm assigned to Albuquerque, but in tx if that matters. I finally have my hearing scheduled for the end of January next year and I've asked my attorneys paralegal, who's always very communicative and replies pretty quickly whether or not an otr is appropriate for me. I applied five years ago on my own I'm just ready to get this over with. I don't understand why he's not replying to me as initially asked him 2 weeks ago, and now asked him again this past Monday in reply to his email to me telling me to complete the form acknowledging I'll be attending the phone hearing and send it back.

I don't want to call if I don't have to because i have neuroimmune disease and the lesions in my brain cause me to lose words when I talk and it frustrates people and I don't want a negative response because of that. It sounds dumb I know but I'm very sick, I hurt all the time I'm exhausted and the anxiety of having to listen to people growing more annoyed with me while I'm trying to talk just makes it infinitely worse.

Thanks in advance. Not asking how to handle this if I end up having to call I will. I'm just wondering if there might be a reason he replies to everything else but not me asking about OTR.


r/SSDI • • 3d ago

Do they enroll you in dual Medicaid and Medicare automatically?

5 Upvotes

I have been on Apple Health Medicaid for years. I was recently approved for SSDI, but my SSDI payment is below the Medicaid limits. And on the SSA website it says my Medicare is active, and my official award letter also gave me a Medicare number. I have not yet set up Part D because I was going to join QMB (or however you say it). I ask because I had two prescriptions to pick up today and Medicaid still covered them, I didn't have to pay for them. So did they enroll me in dual Medicaid and Medicare without me having to sign up for it? Or is the handoff still not done?


r/SSDI • • 3d ago

Better to file without attorney the first time, and hire one if/after denial?

13 Upvotes

Looking to help my family member. We’re planning to file for SSDI after a massive stroke. We’re on the fence about whether to apply without an attorney (just in case it does get approved first try, he won’t have to pay rhe 25% legal fee). Then use an attorney if he gets denied.

Does anyone have any useful information? This is very sudden and our family is struggling to figure out what to do first. Is there a benefit to using an attorney to begin with?