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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> Disability from CH and Migraine Research
        
(Message started by: floridian on Nov 19^th, 2004, 10:09am)

Title: Disability from CH and Migraine Research
Post by floridian on Nov 19^th, 2004, 10:09am

Not sure how to interpret the different tests they mention (and no numbers were provided for CH). Not surprisingly, clusterheads had lower levels of daily functioning on all measured scales, while chronic migraneurs were lower on 6 scales and migraine w/out aura lower on 3 scales.

Quote:

Neurol Sci. 2004 Oct;25(Supplement 3):s105-s107.

Disability and quality of life in different primary headaches: results from Italian studies.

Bussone G, Usai S, Grazzi L, Rigamonti A, Solari A, D'Amico D. National Neurological Institute "C Besta", Via Celoria 11, I-20133, Milan, Italy, bussone@istituto-besta.it.

Headaches may have a wide range of impact on patients' lives. We report the results of Italian studies in which disability and health-related quality of life (HRQOL) in patients with different primary headaches were evaluated. The Short Form 36 (SF-36) was used to assess HRQOL; the Migraine Disability Assessment Score questionnaire (MIDAS) was used to assess disability in patients with migraine without aura or with chronic migraine. Mean MIDAS total scores were evaluated in migraine without aura and chronic migraine patients. The scores at the eight SF-36 scales were calculated in patients with the three studied headaches, and were compared with Italian normative data (Student's t-test with Bonferroni correction). Primary headaches had a considerable negative impact on patients' lives, with poor quality of life and decreased ability to function in daily duties. The mean MIDAS total score was 23.4 in 264 patients with migraine without aura, and 79.2 in 150 patients with chronic migraine. Mean SF-36 scores in migraine without aura (68 subjects), chronic migraine (84) and cluster headache (56) were lower than those from the Italian general population, with significant differences for 3 scales in migraine without aura, for 6 in chronic migraine, and for all scales in cluster headache. Our results confirmed a marked personal and social burden in patients with migraine without aura, and also in the less well-studied forms of primary headaches, cluster headache and chronic migraine.

Title: Re: Disability from CH and Migraine Research
Post by pubgirl on Nov 19^th, 2004, 10:32am

Thanks Floridian, this could be very useful when we are trying to fight for Ch sufferers using the Disability Discrimination Act

Wendy

Title: Re: Disability from CH and Migraine Research
Post by marcelonyc on Nov 20^th, 2004, 12:51am

After losing a job due to complications of CH, i briefly explored disability in this country and it was an awful experience. To qualify, one has to havea condition which keeps them from working for over 1 year. Since the CH come and go and I am episodic, I fall in between the lines. Anyone on this board have any success with Soc Sec??
Marcelo

Title: Re: Disability from CH and Migraine Research
Post by gore2424 on Nov 20^th, 2004, 2:10am

Hello my name is Terry I got SS disability on my first appeal. I filed in Jan 04 after getting layed off due to staff reduction ( yeah right 20 years doing the same job) I was ok'ed in Oct 04 I have been chronic since Nov 1999 before just spring and fall for 13 years . I got every Dr report , every hospital stay and report, every paper on seeing any kind of Dr,every paper from ER visits plus i even went to mayo clinic may 2002 and had brain surgery which they cut the nerve so i feel nothing on right side of my face for life cant fix it back once it was done and i only got relief for 3 months. I think that you must have every paper that has to do with the CH plus i wrote a 17 page telling them want my life was like plus all the meds i take and thier side effects. Hope this is of help to you Terry

Title: Re: Disability from CH and Migraine Research
Post by marcelonyc on Nov 20^th, 2004, 7:04pm

Thanks Terry,

It's sounds like you have been through living hell and that you deserve SS and to live without the worry of having to balance a job. Your tips on applying are right on. Fortunatelyy, I am not a chronic. I am currently just paying attention to the path of this demon as it is interfering w/ my studies. There is talk on this site about depression and CH. This is what gets me about the cycles: it completely interrupts one's life regardless of love for career, love life, other illnesses, in other words LIFE. If that doesn't qualify as a disability, than wht the hell does.

Thanks for your bravery and for being an example. I will keep your journey at heart.

marcelo

Title: Re: Disability from CH and Migraine Research
Post by gore2424 on Nov 20^th, 2004, 10:09pm

If can help you in any way Marcelo any ?'s you have or anything please feel free to ask. I am by no means an expert only one person. I also bought a book called " Managing Pain Before It Manages You" over 5 years ago to try relaxation tips or meditation tips but with these cluster headaches of mine staying still is not an option BUT the book contained a pain diary,daily thought and activity charts ,food diary, and I made copies and for the first 2 years keep it all filled up weekly and I also used the charts and diaries when I applied for SS disability. I now only use them monthly BUT I have been writting in a ledger almost every other day for the last 3 years. I also have 5 small drawings I did when hurting which only my eyes have seen, plus have written two poems one which was copywritten and publushed . I do still to this day see a shrink monthly and it helps me big time for the depression and anxiety I have been fighting for many many years.

Title: Re: Disability from CH and Migraine Research
Post by lionsound on Nov 22^nd, 2004, 2:48pm

I've taken that MIDAS test and I stopped keeping score when my numbers got so high they were past what the disability chart kept track of. (and not in the positive direction) :(

-lionsound