Hello,
I was just wondering if anyone had any suggestions or info on how to get disability because of cluster headaches. I have meeting with my lawyer and the lawyer for disability in Jan. 2012. I have been a cluster headache sufferer for over 20 years now. and have tried every drug known to man, surgeries,week long stays at the hospitals 02 therapy. nothing works. I have 3 or 4 clusters a year. they last from 4 to 6 weeks at a time. I got laid off from a job I had 22 years and was just kept on because of the family disability act. I have had 2 jobs since then and have lost both because of headaches. I filed bankrupcy and have been in depression for many months now. Please help.

I wouldn't do a thing until you've gone to the following sites and read everything there:

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Good advice from Brew. Investigate all possibilities first. If you're PF everything else falls into place. So I've I heard.

Still, info is power. I've dabbled into the disability notion since I'm chronic since 2004. HAs every 3-4 hours for the last month. Hasn't cost me a job yet, but at least one relationship. Or, maybe that was my sterling personality.

My general impression is that getting disability for CH is difficult. The general "rule" is that the disability has to be permanent and preventing you from maintaining meaningful work. Not understanding CH and the peripheral effects by the decision makers is a real hurdle.

Here's a link that at least sorts out the processs....

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Best,

Bob

I suffered from chronic ch.  I had 8 hits a day every day each lasting 1 1/2 to 2 hours long.  I could not focus or concentrate on work.  Spent most of my time in the bathroom headbanging and pacing.  Missed lots of work.  My pleasantries were lacking when it came to dealing with other people.  I was suicidal and very depressed.  I put down on my disability application ch and depression.  They denied me disability for ch but awarded it to me for depression after meeting with one of their shrinks.  Good thing I guess that I put down depression also on the paperwork.  I have been free of ch for over 10 years now due to medication I am on but the depression worsened due to schizophrenia developing.  So I am on ssdi permently now. 

I'd go for it.  My son-in-law is an attorney and works in that field.  He told me that I definitely had a case.  I never did and since retired and so a moot point with me now.

You will be denied at first, everyone is, your lawyer can go from there.

John

Its very difficult, for some reason they don't take cluster headaches serious enough. I have had them for 29 years now chronic for the first 10 years then episodic and now chronic again since 2007. Although I've lost 2 jobs because of them and I get counseling for depression the va only gave me 10% eventhough the military treated them for 10 years. You will need an attorney as I can assure you they will deny it the first time. Good luck to you.

Go to any search engine (Google, etc.) and put in: social security disability. You'll get a number of hits which will guide you to information.

As a requirement by Glaxco Welcome, makers or Imitrex, I had to apply for disability and in return they would provide me with 2 injections per day (patient assistance program), regardless of if I got disability or not. So, in desperate need of more Imitrex, I did apply for disability with no attorney and I was immediately approved by the government. After 2 years of government SSD, the state had to also give me disability, which covered the remaining 20% of medical costs.

Again, I got SSD + IN state Medicaid Disability for Chronic Cluster Headaches. The paperwork (diagnosis & prognosis)your doctor / neurologist must fill out will make or break your case.

The US government does see Chronic Clusters as a severe disability. With the right papers from your doctor, you shouldn't need a lawyer.

see....  guidelines.gov   Section 72  - Cluster Headaches

Sorry I don't have a more precise link at the moment as I am on my back up laptop.

I am on disability for my Chronic CH, but also on my disability is Fibromyalgia and some mental stuff.  I really can't name the mental stuff cause so many words have been tossed around to name it LOL ...
I did not use a lawyer, and I was approved 1st try and my #1 disability is CH .. I had documentation of many many jobs lost, hospital stays, treatment/meds tried and failed.  I also think it helped that I sent a bunch of papers explaining the pain of CH.  I used one particular page from this website, the ball peen hammer anology, sorry I don't have the link but someone else may.  I also made sure I talked to my ss case worker like a person.  I tried my besst to just be human with her.  And lastly I had a great job history before all this crap, and I believe I showwed that I tried, and wanted to work but always got fired because of time lost.

These are the only reasonably recent reports I could find in the medical literature which might be used to support a claim. At least, print them out and save for your lawyer.
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Cephalalgia. 2007 Apr 25; [Epub ahead of print]

Burden of cluster headache.

Jensen R, Lyngberg A, Jensen R.

Danish Headache Centre, Department of Neurology, University of Copenhagen, Glostrup Hospital, Glostrup, Denmark.

The aim was to analyse the socioeconomic burden of cluster headache in patients from a tertiary headache centre. One hundred consecutive patients from the Danish Headache Centre were invited to an interview about the socioeconomic impact of cluster headache. Work absence and use of medical services were compared with a Danish population-based survey. Eighty-five patients participated; 78% reported restrictions in daily living and 13% also outside of cluster periods; 25% reported a major decrease in their ability to participate in social activities, family life and housework. The disease caused lifestyle changes for 96%, most frequently in sleeping habits and avoidance of alcohol. The absence rate among patients was 30%, which was significantly higher than 12% among the general population (P < 0.001). Use of health services due to headache was also higher among the patients (P < 0.001). Cluster headache, although periodic in most cases, has considerable impact on social functions, quality of life and use of healthcare.

PMID: 17459083 [PubMed]
Cephalalgia. 2011 Apr;31(6):671-82.
=======================================

Impairment in episodic and chronic cluster headache.
Jürgens TP, Gaul C, Lindwurm A, Dresler T, Paelecke-Habermann Y, Schmidt-Wilcke T, Lürding R, Henkel K, Leinisch E.
SourceDepartment of Neurology, University of Regensburg, Regensburg, Germany. t.juergens@uke.de

Erratum in
Cephalalgia. 2011 Apr;31(6):766.
Abstract
Despite being an excruciating headache, little is known about the burden of cluster headache (CH) regarding its various subtypes. In a multicentre, prospective study, patients with chronic CH (n?=?27), with episodic CH in the active (n?=?26) and outside the active period (n?=?22), migraine patients (n?=?24) and healthy controls (n?=?31) were included. Epidemiological data, the German version of the Headache Disability Inventory (HDI) and a screening for psychiatric complaints were applied. About 25% of chronic CH patients in our study received invalidity allowance due to CH. HDI scores (total and subscales emotion and function) indicated a severe headache-specific disability (one-way ANOVA: P?<?0.01). Patients with chronic and active episodic CH were significantly more affected than patients with inactive CH and migraine. Healthy volunteers were significantly less affected than all headache patients. Symptoms suggestive of psychiatric co-morbidity were found predominantly in chronic CH: depressive symptoms (56%), signs of agoraphobia (33%) and suicidal tendencies (25%) were frequently reported. Patients with chronic and active episodic CH were severely impaired in non-economic and economic domains such as disability, working life and psychiatric complaints. Remarkably, psychiatric co-morbidity was highest in chronic CH. Thus, especially chronic CH warrants special medical and further supportive care.

PMID:21123629[PubMed]