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 :question

What type of treatment came with the diagnosis?

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
       

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.

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.

You are correct, Kevin. Calan is a brand name for verapamil.

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.  

    START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

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 :o

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!!!

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 :D

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.

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 [smiley=wtf.gif]

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.

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

Linda_Howell wrote on Feb 19th, 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.

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.  

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.

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.

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.

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 :o

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 :o

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.

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.

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