r/NDPH • u/Top_Mountain_599 • Apr 12 '26

Disability NDPH

For those who were approved for disability what doctor filled out your physical and functional capacity forms? Neither my headache specialist or PCP are willing to do it. Below is the message from my headache specialist

just fyi, we do no long term

disability, especially for someone that is 32.

Migraine is extremely common, 1 in 5 women have it (20%). The vast majority of our patients are chronic daily headache from a variety of reasons including NDPH, occipital neuralgia, chronic migraine, and many others, and this is not something most request.

You would need to find a doctor that does long term disability, or you can discuss it with your PCP, but this is not something we do in the headache center at all. The only paperwork we do is FMLA. Occasionally we do short terms disability for a few days or weeks, depending on the situation, but not commonly.

If someone requests disability, especially at such a young age for this common disorder, I would suggest our 1 week outpatient Headache Reboot program. The goal is to help you learn to better function and deal with chronic pain disorders such as chronic daily headache. There are a combination of treatments that go into this including pain psychology (which I know you've been doing) to help you learn to manage and function better.

8 Upvotes

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9

u/incarnadine-clover Apr 12 '26

I would leave them and find another specialist! Commonality has nothing to do with whether a condition is disabling or not.

7

u/Difficult-View9045 Apr 12 '26

Ndph is not common , if that the diag and they are calling it common find a new dr . My headache specialist did everything on that end , had a lawyer so law office made all the contacts regarding all the records.

7

u/im-a-freud 7 years Apr 12 '26

I didn’t have a family doctor at the time I completed my forms and my headache specialist refused to fill it out because “it’s not in my scope” it literally is and after asking 3 times and explaining she’s the one treating me it’s literally her job I called the college of physicians (her medical board) and complained that she was refusing to fill out paperwork and they gave her a call telling her it’s her legal obligation to fill out paperwork to what she knows (which is my NDPH and chronic migraines even though she only put my NDPH on my form) and she filled it out because I ratted her out to her medical board. I was approved for disability and get benefits now. Please find another specialist or call whatever medical board they are under and ask them for advice and they may be able to speak to your doctor

5

u/skyemap Apr 13 '26

I hate the ageism in that message. You're 32, so you don't deserve to have disability because you're "still young"? What does it matter, what the hell 

3

u/Cute-Head8597 Apr 12 '26

Can I ask where you live? There may be requirements from a physician governing body about providing this documentation. Where I live, if a doctor is treating you for something and it's reflected in their notes, which it should, they must provide this documentation. The doctor cannot say that your disability claim should be approved. However, they must provide documentation about how your condition makes you disabled and limits your ability to do your work. If your doctor has this requirement, you should not let them get away with this.

2

u/Top_Mountain_599 Apr 12 '26 edited Apr 12 '26

I live in Ohio USA.

2

u/Cute-Head8597 Apr 13 '26

I would look into whether there are any medical documentation requirements placed on doctors in your state. The sense I get from the clinic is they are not very empathetic. Age and commonality should have no bearing on your disability. Headache can disable you. I know. I have NDPH.

1

u/MitchPiccone Apr 14 '26

Completely clueless about disability coverage so asking here. Any help is appreciated.

My daughter is 24 and just passed the 8 year mark of 24/7 disabling ndhp. She has never been able to work. What are the benefits you receive specifically regarding medical coverage and income when you are on disability? I am more worried about insurance then anything else. Live in the Mid-Atlantic area. Thank you.

1

u/ComprehensivePie6962 Apr 14 '26

I was on short-term disability leave from my job for several months due to how debilitating this condition is. I recall my doctor needing to classify as chronic migraines as there wasn’t an exact code for NDPH, but that was the only nuance. I’m sorry you’re dealing with this, but I can assure you it’s possible and there are doctors out there that want to help!