Click this link to read a post I like on the clusterheadaches.com message board...

Deborah C

Ex Member

Getting Disability
Feb 19^th, 2009 at 2:05pm

Hi.

I have not been able to work for over a year. First knee surgery ( torn miniscus). When I started physical therapy is when the demon surfaced. I have the CHRONIC. Is that considered a diability???

My fiance has been a rock as far as financial support, but as you all know, times R really tough. We need a second income just to get by now. How do I go about addressing this with SSI/SSD.
ANY INFO. would be greatly appreciated.
Thanks- Deb Questioning

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Kevin_M CH.com Sponsor Offline withered branches grow green again. Posts: 8754 Michigan, USA Gender:	Re: Getting Disability Reply #1 - Feb 19^th, 2009 at 2:24pm What type of treatment came with the diagnosis?
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Deborah C Ex Member	Re: Getting Disability Reply #2 - Feb 19^th, 2009 at 2:32pm Treatment so far are: 1. Imitrex-sucks 4 me 2. frova 3.verapamil 4. prednisone -works temp. 5.indocin- made me sick as a dog 6.calan 7.Relpax 8.O2- which I finally got last week. seems 2B the only thing that works. Deb
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Getting Disability Reply #3 - Feb 19^th, 2009 at 2:36pm First off, if you haven't gone at least one whole year without a break of 30 days or more, you're not yet chronic. That's not a criticism, it's just the definition. Secondly, why not call the SSI/SSD people and ask? I would think that they know the most about what they consider to be a bonafide disability. Good luck.
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Kevin_M CH.com Sponsor Offline withered branches grow green again. Posts: 8754 Michigan, USA Gender:	Re: Getting Disability Reply #4 - Feb 19^th, 2009 at 2:39pm We have good links for oxygen use that can help greatly. What form of Imitrex? I think verapamil and calan are the same. Some find no effect from it until 360-480mg a day, and some higher.
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Getting Disability Reply #5 - Feb 19^th, 2009 at 2:40pm You are correct, Kevin. Calan is a brand name for verapamil.
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Linda_Howell CH.com Moderator CH.com Alumnus Offline Do not feed the Moderators Posts: 11927 Santa Maria, Ca. Gender:	Re: Getting Disability Reply #6 - Feb 19^th, 2009 at 2:58pm Deb, Read all of this and see if any of it aplies to where you live and if it can help answer your questions. Linda edited to provide the link. I'm losing it, I swear. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
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Deborah C

Ex Member

Re: Getting Disability
Reply #7 - Feb 19^th, 2009 at 3:12pm

Hi

I am going on 9 months. The only break I've had is when I was twice put on a prednisone tapper and that was maybe after the 5th-6th day of tapper. Maybe lasted 6 days. It was bliss. I would give anything to have month !!
I did my last O2 show stopper, I think 2 days ago. Stopped shadows & all. I feel the crowching tiger, (what I call my shadows) as I write, sneaking up on me. Im out of O2. My neuro. is on vacation so I can't get new RX.
I have an appt. w/pain Mgmt. Doc. next week. Im going to give him the RX from the O2 page.
Both neuros. I've been 2 have diagnosed chronic. So......................??

Deb Shocked

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FramCire

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must be humored a little

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Bolivar, MO USA
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Re: Getting Disability
Reply #8 - Feb 19^th, 2009 at 3:24pm

My doctor diagnosed me a Chronic Cluster Headaches because my headaches were so frequent and it was CH. He didnt understand the definition of chronic CH. By his definition all CH would be chronic.

I dont think you need a new Rx for O2 everytime you need more. In fact, I only needed a new one every year or so when the old expired.

Good luck and I hope you go PF soon!!!

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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do

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Deborah C

Ex Member

Re: Getting Disability
Reply #9 - Feb 19^th, 2009 at 3:34pm

Unfortunetly the trained PROFESSIONAL that I went to(LOL) prescribed 4LPM. E tank. I got 2 uses out of it.

Hey as soon as this thing hits, Im off to the Hosp. no more BULLSHIT.
I already went to Hosp. once & they gave me morphine. Did absolutely NOTHING. This time I know What I need. The only ques. is if my Ins. will cover & @ this point I really don't give a #%*$.

Deb Cheesy

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Linda_Howell CH.com Moderator CH.com Alumnus Offline Do not feed the Moderators Posts: 11927 Santa Maria, Ca. Gender:	Re: Getting Disability Reply #10 - Feb 19^th, 2009 at 4:06pm My Dr. wrote my script for "life" but no, you should not to to have a script each time you get a refill. That's crazy. So is a 4 lpm regulator. I edited my reponse to you up about disability, as I had forgotten to put the link up.
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Deborah C Ex Member	Re: Getting Disability Reply #11 - Feb 19^th, 2009 at 5:00pm Linda, Thak u 4 the site, but I am unsure as to what part of the body ( iI know this sounds ridiculus) that is effected, according to SSI/SSD. Would u mind going on the site?? I went under neirological disorders and was baffled, just as the gov't wants me to be LOL Thanks. Deb
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Kevin_M

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Re: Getting Disability
Reply #12 - Feb 19^th, 2009 at 5:03pm

Linda_Howell wrote on Feb 19^th, 2009 at 4:06pm:

My Dr. wrote my script for "life" but no, you should not to to have a script each time you get a refill. That's crazy. So is a 4 lpm regulator.

I hope you will work on a preventive treatment with doc, also.

Agree with Linda. With a prescription for "as needed", I use Apria for oxygen delivery and they have been excellent, friendly providers. Though scripted for 8-10 Lpm, speaking with knowledgable sources there, they provided a 15 for me. But any problems with masks and regulators can be dealt with, the correct script is most important.

I've not kept up with the location and updated oxygen info here on the site. If someone could help with posting the links of the most effective use we have compiled and some tank sizes, this would enable a better conversation for Debbie at her next dr appt.

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« Last Edit: Feb 19^th, 2009 at 5:04pm by Kevin_M »

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Kevin_M

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Re: Getting Disability
Reply #13 - Feb 19^th, 2009 at 5:09pm

Kevin_M wrote on Feb 19^th, 2009 at 5:03pm:

Linda_Howell wrote on Feb 19^th, 2009 at 4:06pm:

My Dr. wrote my script for "life" but no, you should not to to have a script each time you get a refill. That's crazy. So is a 4 lpm regulator.

I hope you will work on a preventive treatment with doc, also.

Agree with Linda. With a prescription for "as needed", I use Apria for oxygen delivery and they have been excellent, friendly providers. Though scripted for 8-10 Lpm, speaking with knowledgable sources there, they provided a 15 for me. But any problems with masks and regulators can be dealt with, the correct script is most important.

I've not kept up with the location and updated oxygen info here on the site. If someone could help with posting the links of the most effective use we have compiled and some tank sizes, this would enable a better conversation for Debbie at her next dr appt.

Since this has been your first year of experience, with a little more knowledge from here, hopefully hospitals and pain management centers can be unused last resorts.

*Sorry, I modified but I guess hit the reply or quote button instead. My delete button has not worked since last upgrade to site. I'm stuck with this post.

*I see the highlighted oxygen link in the tabs on the left is very well done! I do not normally view the site with the side tab links included.

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« Last Edit: Feb 19^th, 2009 at 6:53pm by Kevin_M »

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Linda_Howell CH.com Moderator CH.com Alumnus Offline Do not feed the Moderators Posts: 11927 Santa Maria, Ca. Gender:	Re: Getting Disability Reply #14 - Feb 19^th, 2009 at 5:51pm Deb, Cluster headaches is listed as a rare NEUROLOGICAL disorder affecting the Trigeminal nerve in the head and causing excruciating pain. Anything that involves reams and reams of paperwork to figure out makes my eyes glaze over and I get sick, or I start crying. Good luck.
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deltadarlin

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Re: Getting Disability
Reply #15 - Feb 19^th, 2009 at 6:07pm

Your first step would be to have a doctor state that you are disabled and cannot work. Then starts the fun part. Reams of paperwork and what not and most likely they will have one of their doctors examine you. You will probably be turned down the first time, it's not that unusual. Then you appeal.

Ask Charlie how long it took him to get disability.

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slhaas

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Re: Getting Disability
Reply #16 - Feb 19^th, 2009 at 6:45pm

I think in order to qualify for disability you need to be out of action for a year. Furthermore you will need to have strong support from your doctor(s) and likely will have to fight to get it. This is not a quick process, and though you would get some help, it's likely not a LOT of money, either. There seem to be more and more CHers qualifying for disability, which helps matters when you try for it. I would contact SSA, and your doctor(s) to get the process started if they decide it's in your best interest.

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deltadarlin CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 3823 Downsville LA Gender:	Re: Getting Disability Reply #17 - Feb 19^th, 2009 at 9:42pm slhaas, Got it partially right, it is a year, but if you can prove that the disability will last at least a year, that is a qualifier.
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Deborah C

Ex Member

Re: Getting Disability
Reply #18 - Feb 20^th, 2009 at 9:40am

Hi
Im back.When I asked what body part, Duh!! I guess I wasn't clear. Im really not THAT stupid !!
I went to the neuro. section and was/am baffled by what section would pertain to clusters etc. I have Dr. letters from Jan 08' that I am unable to work. My case is alittle more involved. I have serious back/neck injuries also. Next week Im going to see if I can get surgery to help with the pain. It's nothing compared to CH.

Deb Shocked

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Deborah C

Ex Member

Re: Getting Disability
Reply #19 - Feb 20^th, 2009 at 9:40am

Hi
Im back.When I asked what body part, Duh!! I guess I wasn't clear. Im really not THAT stupid !!
I went to the neuro. section and was/am baffled by what section would pertain to clusters etc. I have Dr. letters from Jan 08' that I am unable to work. My case is alittle more involved. I have serious back/neck injuries also. Next week Im going to see if I can get surgery to help with the pain. It's nothing compared to CH.

Deb Shocked

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Karla CH.com Alumnus Offline One of Many and Never Alone - Join OUCH Posts: 3837 x1\|Madison WI USA Gender:	Re: Getting Disability Reply #20 - Feb 20^th, 2009 at 6:33pm You may want to try lithium 900mg or topamax upto 600 mg and see if that helps. Lithium has the potential to do wonders for chronic ch.
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Jonny Ex Member	Re: Getting Disability Reply #21 - Feb 20^th, 2009 at 10:37pm This may sound harsh. I do and dont want it to be. Get a job, I have worked through 31 years being chronic. I have been through hell and back! It can be done and I am living proof! Good luck to you.
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Charlie

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Re: Getting Disability
Reply #22 - Feb 21^st, 2009 at 12:22am

Disability took me more than 3 years. Mine is for what is a stubborn case of epilepsy which is a more accepted reason for appications. It took a ton of paperwork, research, interviews, and in my case going before a judge. It wasn't easy.

Looking back on it, I have no right to complain about my circumstances. I wish it wasn't something I had to deal with but I did. It may be a good thing that it isn't easy. I don't look like I have a serious disease.

Good luck though and if you pursue it, know that it will likely be quite a ride.

Charlie

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