Has anyone ever tried to or gotten disability with these damn cluster headaches?  Sometimes they can be so debilitating that you can't work for days. Don't get me wrong I am definitely a hard worker and not looking for a free ride but there has to be some of us out there that have them so bad that they are completely unable to work. That scares me sometimes. So far I have been lucky. I have to call in here and there but I wonder if it will ever come to a point where they will become so bad that here and there becomes more and more often.

Sign up for temporary Family and Medical Leave Act. I did, but I've never had to use it.

I tried to sign up for an Intermittent Leave that my company offers.  The information was geared toward a medical leave and wanted information from my doctor, such as "How long will the patient be in treatment?" or "How long will the patient be in recovery?"  Since there were no answers to those questions, I had to go back and forth with the Leave department and by the time I started making progress, I was in remission.  Since then, I just make my manager aware when I'm approaching a cycle and let her know the previous impacts.  Most of my managers are understanding and don't make me reapply for the Intermitten Leave. 

I would recommend trying something official with your employer so there is a record in case something comes up later and it impacts your work.

Better safe than sorry.

I was able to successfully get short term disability for the 3 months I was out for my CH- the worst cycle I'd ever had. My insurance initially denied my claim twice. It took a lot of time and effort on my part- careful documentation and a TON of paperwork- but I ended up winning on my second appeal. If it ever happens again, I'll know better how to document and keep better records- cause that's exactly what I feel like doing when I'm in the middle of 6 CH attacks a day! It can be done though... luckily I had opted for short-term disability through my company...

That's awesome Koda, way to stick to your guns. Glad ya stuck your head in. ;)

Joe

Hey Bonnie,

This is my opinion.  Please bear that in mind while reading.

Yes, it is possible.  I'm on permanent disability originally due to chronic ch's. 

The amount of documentation that's needed is staggering.  My file is huge, like everyone's here.  I have to continue to document the progress that is made or not.  I average 10-15 per day, 45 min. up to 3 hours.  I've known a bunch of people that have been diagnosed with chronic headaches that are disabled.

White matter lesions on brain, indicating brain damage as well.  And now a whole new slew of symptoms which I'm working on. 

If you want an opinion about 'being in the system.'-I would rather not be.  Why? Neurontin, thus far is the only med that worked for my ch's.  They went generic to Gabapentin.  Fine.  However, two years ago they switched manufacturers four times in one year.  The binders between the manufacturers are all different.  It was like getting used to a new medication every time they switched.  They don't go with what works best.  They go with what is cheapest. 

If you can continue to work, I would recommend you do so.  Remember, I said if.  I understand how hard it is to work with the ch's.  I lost jobs over them.  If your employer works with you, I would have considered that a God send. 

A lot of people would like to think I'm lazy.  Very, very wrong assumption.  I was one of the hardest workers you would want to meet.  16 hours a day does not denote being slack.  And I still try to do small menial tasks when I'm capable. 

From the practicality standpoint of insurance alone, I would recommend staying with the job.  But, if the pain has increased to the point where you can't do it on a daily basis for years, then apply.  It takes applying at least twice to get it.  Sometimes you also have to hire a lawyer to review the case and present it. 

It also sometimes means that you cannot see the specialist you need to see, because they don't take medicare. 

Those are the negatives. 

Positives.  You can work on disability.  Usually, you can only make a certain amount of money on it, but you can retain a job. And social interaction is still a necessity. 

These are just some of the factors to take into consideration.  I've tried to go back to work multiple times throughout the years and always wound up back in the same situation.  Once you are in the system, it is difficult to get out of it. 

Please keep in mind that this my opinion.

CH is only part of my disability claim. I am comoridly mentally ill and have a trashed spine. I will let you know what the SSDI  ADJ says after July. That is when my court date is. For STD and LTD they focused on my mental disabilities so they only had to pay me for two years instead of five.

Yes, I'm working currently but I've been on both private and social security disability.  I also worked in health and disability insurance for years.  I apologize, I didn't read closely.  If you are American, the following should help.

You're NOT going to get on social security for CH until you've been out of work for more than a year, are officially Chronic and intractable, you have tried every drug AND been denied on multiple appeals.  When you get to the stage that you can see a judge (in person or by video conference) then you can get on social security.  At that point you must be so bad that you cannot do anything - at my conference they asked an occupational therapist if I would be capable of doing menial work such as washing hotel laundry.  When the therapist said no, I was granted social security.

Your best bet as far as work goes (and this only works if your job is with a medium or large company who must comply with disability laws) is to go through the paperwork to have your CH defined as a disability according to the Americans with Disabilities Act.  This law states they they must give you reasonable accommodation - depending on the nature of your work this could mean unpaid time off without penalty, or flex time, or access to a cold dark room where you could use an O2 tank.  Basically whatever you and your doctor consider reasonable, they would have to comply with.

This is how I dealt with my headaches when I first went chronic.  When I got to the point that I was missing more than half my time at work, my boss pointed out that I would make more money if I just went on (Private) disability. I started out with a short term leave - my neurologist at the time thought perhaps it was just a bad cycle and I would be back in remission in no time.  Eventually that transitioned into long term disability.  If you are bad enough off that your CH is affecting EVERY aspect of your life to the extent that you truly can't function anymore, you can be on disability. 

As a side note,  try supplements.  They're way less expensive and safer than medicine, as well as much more effective for many.  Batch's combo was more effective for me than anything else.  Eventually it seemed to stop working for me and high doses of D3 (10,000 IU/day) have been literally a lifesaver since then.  I felt better the very first day, and dramatically better in 3 days.