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        Cluster Headache Help and Support >> Cluster Headache Specific >> Applying for disability?
        
(Message started by: Bond007 on Jan 10th, 2007, 5:08pm)
Title: Applying for disability?
Post by Bond007 on Jan 10th, 2007, 5:08pm
I'm curious if anyone has ever tried applying for disability through the SSA.  I'm having almost daily headaches since Oct. 2005.  I just don't know how much longer I can cope and work.  UGH!!  My employer has gone out of their way to work with me.  So far, in fact, that I'm set up with home office for those days that I just can't drive because of the pain and/or the meds.

My wife won't even let drive out of town anymore for fear I'll get hit, have to dose with pain meds, and won't be able to drive home.

And, yes, I know many of you have dealt with the beast for longer periods of time than I have, but lately I'm feeling that I'm end of my rope.  I can't go through another year like this!!!  ARGH!
Title: Re: Applying for disability?
Post by JeffB on Jan 10th, 2007, 6:20pm
I know it's been brought up before but I do not know if anyone has receieved any.
Title: Re: Applying for disability?
Post by JeffB on Jan 10th, 2007, 6:21pm
What pain meds are you taking?
Title: Re: Applying for disability?
Post by Bond007 on Jan 10th, 2007, 6:56pm
Nasal Stadol, generic form actually called Butorphanol Tartrate.
Title: Re: Applying for disability?
Post by JeffB on Jan 10th, 2007, 7:49pm
I would look into prevents and other meds that are out there before giving up.
What does your Doc say? Why hasn't the Doc helped more with your pain? These fockers make good money from folks like us, make him earn it!
Title: Re: Applying for disability?
Post by BarbaraD on Jan 11th, 2007, 5:30am
I'm with Jeff -- need to look into prevents. (Verap, lithium, topamax, etc)

Have you tried the "usual" pain releivers like Imitrex or Ergotomine?

Red Bull at the onset and melatonin at night?

I think you have to be off work totally for six months before you become eligible for disability.

Hugs BD
Title: Re: Applying for disability?
Post by Bond007 on Jan 11th, 2007, 8:31am
We tried Depakote up to 500 mg and all it did was to make me extremely lethargic.  We tried Topamax up to 300 mg and I started throwing kidney stones like crazy -- to the point that I was litterally peeing a beachfront for almost 2 weeks.  Now, I'm on verap @ 240 mg a day.  It helped at first (just like all the other drugs) to reduce my CH frequency & intensity, but that was only for about a month.  Now, the headaches are back with a vengeance.  That said, I'm still better off today than I was before the verap.  I do see my doc on 1/29 and I'm positive we'll be upping the verap.  I'm crossing my fingers until then.  As for trying lithium, I'm not too sure it'll help.  At any rate, I know it didn't help when I had my very first attack when I was 23.  At that time, I was lithium for another reason and the headaches were excruciating.  Will it work today?  I won't know unless I try it again, I suppose as body chemistry does change over time, but I wouldn't bet the farm on it working.

As for abortives, I've got Imitrex nasal which works about 50% of the time.  The problem there is that I can only use up to 2 doses per day with no more than 4 in a week.  Hell!  I get at least 4 HA's a day!!  The manufacturer states that more than 4 doses in a week could cause rebound headaches.  I've also O2 and than helped in the beginning and it still does to some extent today, but I've got to catch the CH at the very onset or I'm just wasting good O2.  Even when it does work now, it's only delaying the attack and thus the delayed attack is typically harsher than a "normal" CH.

I'm also taking 9mg of melatonin at bedtime and it does help somewhat.  At the very least, the CH attacks haven't been bad enough to wake me.  My wife tells me that she's positive I'm getting HA's in my sleep because of my restlessness, moaning, furrowing my brow, putting a hand to the left side of my head, etc.  It's no wonder that I wake up every morning feeling drained and completely exhausted.

For the most part, both my GP & my neuro have been very liberal with the meds and willing to try new approaches.  I really can't complain with how either has handled my case.
Title: Re: Applying for disability?
Post by taraann on Jan 11th, 2007, 8:43am
Yes it's possible.  I am on disability primarily for the  chronic CH.  I just barely got approved a few months ago.  I don't a have a ton of time right now (child with the flu) so I'll have to check back in here later.
Title: Re: Applying for disability?
Post by Bond007 on Jan 11th, 2007, 8:47am
Thanks for checking in taraann!  I'll keep an eye out for your post.
Title: Re: Applying for disability?
Post by kcopelin on Jan 11th, 2007, 9:25am
I applied in September-no word yet-have been unable to work full time since Apr 05.  Will see what happens-I certainly hope they approve it-don't want to have the go the lawyer route.  
We have gotten to the end of any and all cushions and hidden savings we had-living on my husbands take home pay and what remains of my AF retirement after child support comes out-not a pretty sight.
I am praying that it works and can't wait to hear from Taraann.
PFDAN y'all
kathy
Title: Re: Applying for disability?
Post by taraann on Jan 12th, 2007, 8:54am
Well the biggest thing that helped me get SSD was my long medical history.  I had many hospital admissions, many different meds tried, I've tried Occipital Nerve blocks more than once, DHE, physical therapy, etc etc.  So I had a TON of medical release forms to sign that showed all of that.  

Also I have tried to work many times over the years and always ended up with my head outta control usually within the first few weeks of work.  I do get multiple daily hits, with once in a while a bit of a break with only my 3 am hit.  But always after that "break" my ch climbs outta control, then I lose the job I had.  So that helped to show that I tried to work and couldn't.

I also sent in explanations, and forms that fellow CH'ers sent me that helps to explain this disease.

Being very honest with the SS caseworker is important.  There are repeat forms and they told me I would get reassed each year.  

The biggest thing I needed from SS was the health insurance but that takes 24 months to get.
Title: Re: Applying for disability?
Post by UN solved on Jan 12th, 2007, 12:35pm
Yes, you can get disability for CH. Your doctor will be the one who makes it or breaks it for you.

UNsolved
Title: Re: Applying for disability?
Post by taraann on Jan 12th, 2007, 4:05pm

on 01/12/07 at 12:35:21, UN solved wrote:
Yes, you can get disability for CH. Your doctor will be the one who makes it or breaks it for you.

UNsolved

Not im my case... I didn't have insurance or a doctor at the actual time of my application.   The past medical history did help though.
Title: Re: Applying for disability?
Post by OuTLaW on Jan 19th, 2007, 12:57am
I am 24 years old and have been suffering with seasonal CH since the age of 15 . I totally understand what you ppl are going through and wish you the best of luck
Title: Re: Applying for disability?
Post by ghostwriter on Jan 20th, 2007, 6:08am
Post deleted by poster.
Title: Re: Applying for disability?
Post by Karla on Jan 20th, 2007, 7:09am
Your dose of verapamil is very low.  Most try up to 960mg a day.  That is a dose that alot of people are on I believe.  If not that just a level below that.

Here is my list of meds tried.  Maybe it will give you some ideas.

Preventatives tried
1.      Lithium
2.      Indocin
3.      Verapamil
4.      Thorizine
5.      Depakote
6.      Propranol
7.      Amitriptyline
8.      Lupron
9.      Naproxen
10.      Welburin
11.      Topamax
12.      Neurontin
13.      Meclizine
14.      Celexa
15.      Effexor
16.      Serzone
17.      Nifedipine
18.      Clonadine
19      Lamictle
20      Lisinoprine
Abortives tried
1.      Oxygen
2.      Migranal ns
3.      Maxalt
4.      Midrin
5.      Ergotamine
6.      Mortin or tylanol
7.   Amerge
8.      Axert (half hour to kick in)
9.      Imitrix ns (6 min to kick in)  I prefer this method!
10.      Zomig (half hour to kick in)
11.      Frova works 2 hrs only
Rescure meds
1.      Fiorinal
2.      Fioricet
3.      Butalbital
4.      Tylanol-3
5.      Vicadin
6.      Percacet
7.      Stadol ns

Good luck.
Title: Re: Applying for disability?
Post by taraann on Jan 20th, 2007, 7:41am

on 01/20/07 at 06:08:48, ghostwriter wrote:
My application was declined and though I had an attorney offer to take it to court, I opted out. I figure if the government preferred to spend the taxpayers monies on other people instead of me then who am i to argue... i have spotty work history because on ch, but little to no medical care as it is too expensive... tried to see doctors but the free clinics get mad when i explain i am there for ch treatment (i have been barred from 3 clinics because they dont see ch as more than a headache)... I am currently going on 2 years ch free and enrolled in college (something I missed thanks to my early onset of the beast) and taking it classes and hoping to finally have a life free of ch....

if you do receive money from them, I would be most interested as they will then be liable for the last 20 years i was unable to work or receive aid i was entitled to... that would be a hefty check to say the least... (i filed my app when i was 22 which is actually 14 years ago which would mean 12 years of unpaid benefits i feel they owe me not to mention all the unaid medical bills from er visits for o2 which never worked)... yes, please let us know how it turns out

No matter when they determine you were disabled or how long ago you started the application process the maximum they can go back (for back payments) is 2 years.
Title: Re: Applying for disability?
Post by Charlotte on Jan 20th, 2007, 12:03pm

on 01/20/07 at 06:08:48, ghostwriter wrote:
if you do receive money from them, I would be most interested as they will then be liable for the last 20 years i was unable to work or receive aid i was entitled to... that would be a hefty check to say the least... (i filed my app when i was 22 which is actually 14 years ago which would mean 12 years of unpaid benefits i feel they owe me not to mention all the unaid medical bills from er visits for o2 which never worked)... yes, please let us know how it turns out


Ghostwriter, I'm sorry for your troubles, but isn't each case determined individually?  If someone else receives a benefit, it doesn't change the fact that you did not.  It doesn't mean anyone owes you.  If you feel you should try again, get someone to help you present your history and documents, maybe talk to that lawyer.

Charlotte
Title: Re: Applying for disability?
Post by artonio7 on Jan 20th, 2007, 12:43pm
I agree with Charlotte Ghostwriter. Try again. I don't think they will award you 20 years of "Back-Pay" however. Just having the medical alone would be a God Send for you. Although there are a number of restrictions on which medicines will be covered it's certainly better than no coverage at all.


At any rate try not to be discouraged, consider Charlottes advice and find a lawyer or agency that can help you to reapply.

Hope things work out for you.

with warm regards,
Tony
Title: Re: Applying for disability?
Post by ghostwriter on Jan 21st, 2007, 5:45pm
Post deleted by poster.
Title: Re: Applying for disability?
Post by LeLimey on Jan 21st, 2007, 5:52pm
Ghostwriter I don't think anyone was judging you hon, merely pointing out that because of the way the system was set up you were limited in what you COULD claim. It wasn't a judgement on what you were entitled to, merely stating the not always fair facts.
We're all fighting the same battle here and its not each other  :)
Helen
Title: Re: Applying for disability?
Post by ghostwriter on Jan 21st, 2007, 5:57pm
Post deleted by poster.
Title: Re: Applying for disability?
Post by LeLimey on Jan 21st, 2007, 6:01pm
Well sadly thats one I can't help you with - you'd need to ask a government office about that one. If your system is like the one we have here then each case for disability payments are judged on their own merits and how forms are worded  and as Tara said, documentation of meds and timeframes is of paramount importance.
I can only suggest you follow others advice and seek legal advice, good luck if you do and let us know how you get on
Helen
Title: Re: Applying for disability?
Post by Charlotte on Jan 21st, 2007, 6:02pm
I still say that if someone else receives disability benefits, it is on an individual basis, and has nothing to do with someone else, you, me, etc, not receiving a benefit.

This is not an entitlement issue.

Charlotte
Title: Re: Applying for disability?
Post by Charlotte on Jan 21st, 2007, 7:42pm
Ghostwriter has given me credit for driving him away.

I apologize to Wayne, and to all who enjoyed his posts.

Charlotte
Title: Re: Applying for disability?
Post by LeLimey on Jan 21st, 2007, 7:52pm
Charlotte hon please don't hold yourself responsible, you didn't hit delete and you were never horrible, just straight talking and that is the best we can do for anyone
Those of us who know you, love you
Helen
Title: Re: Applying for disability?
Post by taraann on Jan 21st, 2007, 9:29pm
Yeah I didn't see anything nasty in this thread at all! hugs ..... I hope Char doesn't feel responsible and Ghost comes back.... cause it's not easy when it comes to anything government and it's totally not personal
Title: Re: Applying for disability?
Post by Bond007 on Jan 24th, 2007, 8:09am

on 01/20/07 at 07:09:54, Karla wrote:
Your dose of verapamil is very low.  Most try up to 960mg a day.  That is a dose that alot of people are on I believe.  If not that just a level below that.

Here is my list of meds tried.  Maybe it will give you some ideas.

Preventatives tried
1.      Lithium
2.      Indocin -- tried it, didn't help
3.      Verapamil -- on it now, but a low dose
4.      Thorizine
5.      Depakote -- was up to 500mg and made me sleepy
6.      Propranol
7.      Amitriptyline -- on it @ 75mg, does nothing
8.      Lupron
9.      Naproxen -- tried it, didn't help
10.      Welburin -- tried it, didn't help
11.      Topamax -- tried it, got kidney stones and made me dizzy (I'd actually fall down) when standing
12.      Neurontin
13.      Meclizine
14.      Celexa
15.      Effexor -- tried it, made me lethargic
16.      Serzone
17.      Nifedipine
18.      Clonadine
19      Lamictle
20      Lisinoprine
Abortives tried
1.      Oxygen -- use it, doesn't abort just delays
2.      Migranal ns
3.      Maxalt -- tried it, helped for a while but no more
4.      Midrin
5.      Ergotamine -- tried it, helped for a while but no more
6.      Mortin or tylanol -- won't even touch the pain
7.   Amerge
8.      Axert (half hour to kick in)
9.      Imitrix ns (6 min to kick in)  I prefer this method! -- use it now, helps 50% of the time
10.      Zomig (half hour to kick in)
11.      Frova works 2 hrs only -- tried it, didin't help
Rescure meds
1.      Fiorinal -- have it, doesn't do anything
2.      Fioricet -- tried it, didn't help
3.      Butalbital -- tried it, didn't help
4.      Tylanol-3 -- have it, doesn't do anything
5.      Vicadin -- have it, but need 2 to even dull the pain
6.      Percacet -- have it, same as above
7.      Stadol ns -- use it, IT WORKS!

Good luck.



As you can tell, I've tried quite a bit.  Thanks for the list, though.  There are some other meds up there that I haven't tried yet.

My docs and I do have a concern about increasing the verap too much, though.  I already have low B/P and the 240 mg of verap isn't helping that situation much.  Even when I'm in pain my b/p doesn't raise all that high.  When I was passing numerous kidney stones a couple of months back, my b/p barely spiked around 130/90.  Usually, I'm right around 105/65 and 92/60 isn't uncommon.  So, that really limits what preventative drugs I can try.


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