CCH or episodics w ling Cycles, how do you make a living

[Freud]

And you’re using a regulator that goes to 25LPM?   My CHs can be resistant to O2 or rebound when I come off but it still helps sometimes.  But not less than 25LPM and if I’m in the last quarter of an M tank it doesn’t work as well. 

[Freud]

DHE ever suggested?

[Freud]

Not sure if it should be tried w triptan reaction but may be worth looking into. Never heard of it aborting a cycle but attacks yea.  Or a DHE infusion and inpatient setting to get a rest I’ve heard others do.  @BostonHeadacheDocany advice?

[Rod H]

I've been with the same company for 31 years. I get hit I go home and come right back. I manage a grocery store with 200 employees. It sucks when I'm in cycle but I  just have to power thru. Thank God for this place. It has made it alot more bearable. Freud I read most of your posts hang in there.

[Freud]

Thank you @Rod H  I’m fighting the good fight.  Did manage to get a little nasal spray for my trip and to bridge to a new doc.  However one ketamine clinic I spoke w told me at home ketamine nasal spray is illegal in Florida.  I’m not sure if that’s just for Esketamine for depression or all ketamine.  I’m going to be devastated if they were right about the law.  I really need the oral troches and then the spray if the troches and oxygen don’t abort.  Less than a week till we move and I’m shitting bricks about not having oxygen if Apria won’t fill my tanks while I’m “on vacation “ until my health insurance gets switched.  Thank god CMS approved oxygen this year.  Thanks to all that pushed for it all these years.  

[Juss]

I had enough paid in for SSDI but in my area, it is far from enough to subsist, and I discovered mine is on the substantial-end. Further, disability leads to debilitating isolation, depression, and further complications. After 7 years of living on 35% of what I am accustomed to, the income is just part of the problem. 

I'm going to get myself thrown off of here but with your exemplary medical knowledge, fire the doctors and go the functional medicine route.

Two years ago I was banging Keterolac, DHE, and using Fentanyl Transdermal, with OxyContin for breakthrough pain. I fired all my docs started functional medicine and hired my disability attorney to explain to SSA that just because I don't see a damn neurologist doesn't suggest that I am not disabled. She also explained the same applies to my spine surgeon, pain management, and so forth.

I am at the point that I can attend college, I take a calcium channel and no CGRP or Botox. I have seen what the abortives do to the organs, nope, no thank you. I take zero abortives. And it is no strange coincidence that once I quit the Western Medical Industrial Complex it’s been 15 minutes get out, I went from 30 medications to 4. That is in two years

What is more, for the first time in 24 years I wasn't a pill-popping manic depressive crackpot relying on some Charlatan proclaiming “academic teaching psychiatrist.” I fired her as well. I now see a Psych NP and take Lithium ER. That doesn't surprise me.

Fire your doctors. You know far more than me. Write your scripts, you can as a P.A. or N.P. in MD, and doctor yourself. It isn't some esoteric convoluted mess that they make it out to be.

Last, I have shit days. When the Fibromyalgia and Stiff Person Syndrome kick in, I am knocked on my ass, and all bets are off. If not for the crippling exhaustion, I would attend university, push for my stipend/teaching position, and honors reinstatement. I'm 38. It can get better.

Look in places you never thought to. This isn't indefinite unless you let it be, i.e. continue to explore the western approach of treating the symptoms and not the cause, the root. Everyone laughs at orthomolecular medicine, I don't, my life is fundamentally different from two years ago. 

Again, I thought this was permanent believed all the doom and gloom perpetuated on here, and to be fair I had both chronic intractable migraine and cluster headache, by ICD. I tried killing myself and came close more than once. Drown out the nonsense and start looking at the crap that you put in your body.

Respectfully, if I with pursuing majors in Econ, Accounting, Real Estate Development, can discern my labs and dictate what my doctor has drawn, you can. Look into every deficiency and look at every angle: shit, piss, and blood. Once you eliminate all nutrients (macro/micro), then subject yourself to being a pharmaceutical lab rat. 

[Freud]

I will hire an attorney if I get rejected but as you said it’s not enough to live just at or above the poverty line.  I have no doctors now, aside from the ketamine and psych meds I have no major issues other than a bulging C5.  I have no medication side effects. So no doctors to fire.  I just moved and have an appointment w a Neuro listed on this site.  I don’t need a change to my meds except increasing my ketamine/ adding intranasal.  Sounds like you’ve been through the ringer.  I think I’m going to look for a job training dogs.  I apprenticed a dog trainer years ago and it seems like from all my options that would be the best w my CH.  I have had 3 good days in a row. Slept 12+ hrs 3 days ago. First time I’ve slept for more than 5 hrs in 4 years.  It’s usually 30-60min at a clip abd I get whacked.  I think it’s bc I used up my ketamine early and suppressed my CH.  I really want to try an infusion but that’s unaffordable.  

[Juss]

I'm sorry to hear your situation and rest assured that you can hire an attorney and that it does not cost upfront; however, they take a substantial chunk of back pay. And sadly, those attorneys that you see on TV are not the ones that you want to turn to. Mine was/is an R.N. and an Attorney.

There is a cheaper more efficacious way, congressional inquiry. My family knew my representative, and I only hired an attorney to expedite the process. I cleared denial/appeal/approval in under 6 months. I understand that most fight for years.

The point, write your congressman. Don't be verbose. Brush up on Shrunk’s Elements of Style. Most write their life story and that causes your entire case to go unheard. Keep it to two pages, hard facts, no pomp and circumstance.

Write like a lawyer and your representative will contact you to assist in a few days. Write with pretentious diction and all nonsense you won't get a return email. When I wrote a congressional inquiry most of the available information was garbage. I will see if I can locate Shrunk’s classic (most have never heard of it).

Finally, most high-income earners fall under the 130% FPL, $1800 to $2000 SSDI disbursement. I believe some hit the $3,000 mark, I have only read of such. Here is the issue. At said income, MA (Medicaid) is null and void, unless you have substantial private, NOT FEDERAL, student loan debt. They offer few deductions. Further, SNAP (food stamps) requires for you to receive the full $234 that you be well below the FPL. If you deduct away every damn thing, you still start at 130% FPL which means you receive at best $30 a month.

I believe in allowing the private sector to handle all of this and I feel like an awful person for taking a dime from the government.

In my works, I knew of all the private-sector options, and thus it is inadmissible. Worse, both CMS and SSA are bankrupt. One of my honors thesis was a scathing review and neither can sustain operations. Sure, print money away. No one understands the velocity of money, the money multiplier, and the risk for hyperinflation that it imposes. I should stop, but while on that tangent just look at a small printing of money here and there. Aug 15, 1971, was the end. I am, well was planning a Masters, from the Austrian School and should disclose that. 
 

The point, don't rely on Disability as a longterm solution. You will have to find better sustainable solutions to make ends meet, and that is my situation. 
 

Last, this is transient. It gets better. I am not a social scientist, but I do read academic periodicals instead of the crap that most are hyperfocused on the tele too. There appears to be a transformation in the workforce, and the hybrid model appears to be a norm, not an exception. If you can work at home, and I should not condone this, crank out two all-nighters, then burn out, and repeat.
 

I will find that writing guide.

[Juss]

This is the quintessential guide on the art of rhetoric. Okay, a primer. You can throw the rest in the wastebasket. I am shocked by how my public university education required this in an introductory course, yet I know some soft Ivy Leaguers that have never heard of it. 

http://www.jlakes.org/ch/web/The-elements-of-style.pdf

[Freud]

Update

 

bad news. Saw new Neuro today and he doesn’t use ketamine like his office staff said he did.  I’m up the creek w no paddles.  Getting my self used to not having any aborting options other than the 4 M tanks I’ve been saving for the days you just want to die so hopefully I don’t enter that head space.  
 

instead the new Neuro wanted me to try Emgality. This was after me telling him I’ve had CCH since 2017 w only one month break in the first year from mm but couldn’t repeat results.  He then says @are you sure you have CCH you get 6-10+ attacks a day?  “.  I almost lost it.  This was after listing all the failed treatments I’ve tried and the ones I won’t try.  
 

He gave me a garbage bag full of Emgality  (small bin) full of migraine starter boxes. So that’s 2 120mg auto injectors  that I have to play w one to only get half a dose out of and into me each month.  I have not heard anything good about success in CCH Pts.  They abandoned the CCH arm of the study for Christ sakes.  He didn’t want to hear it. Says so I guess I’ll see you in 3 months?  And he took an empty troche packet w my script.  To talk w his partner about but wasn’t hopeful. 
 

the hunt fir non psychiatric at home use Ketamine continues.  Purdue Pharma Feck U.  Screwed up all of pain management.  Freaking infusion only clinics are everywhere. I’d try it if I could afford it....  

 

got my oh shit helmet on!

[Bejeeber]

1 hour ago, Freud said:

Saw new Neuro today and he doesn’t use ketamine like his office staff said he did

Augh that's f***ed up man. Not that it's surprising anymore when a switcheroo like that happens, but it doesn't make it any less messed up.

Having to strap on that oh shit helmet is such a bad place to be in . Really alarmed and sorry to hear it - thinking about you and concerned about you @Freud.

 

[Shaun brearley]

Not good buddy wish their was something positive i could say but trouble is their isn't.  Its s--t . I know I shouldn't but I sometimes wish these so called neurologists could experience the pain we CH sufferers have to go through not just the pain but the everyday life we live with this  S--t . Sorry like I said I shouldn't wish this on any1 but when you hear thing like this it makes your blood boil. Stay strong buddy thinking about you 

[Freud]

Any thoughts on Emgality?  Haven’t seen much from chronics and Emgality here let alone episodics.  @BostonHeadacheDocany thoughts?

[Freud]

Thanks @Bejeeberand @Shaun brearley!!!  Got slammed last night and this AM...

[spiny]

That truly bites that they lied to you!! Fingers crossed that Dr B can recommend another doc who has 1/2 a brain and staff that does not lie. Arrgghhhh.

[Freud]

Update

 

i have another Neuro apt tomorrow and they said they use ketamine when indicated.  I made them ask they swore they did.  It’s down in miami again so another long car ride.  
 

I spent the day calling every pain doc in an hour radius and some further.  The one I found that called me back and said they would help me.  Shocked me when I told them I was self pay and they told me they don’t do self pay only insurance!!!  Never heard of such a thing.  I begged them to ask the doc to extend me a professional courtesy and that I was desperate to find some one to help me.  They said he would see me.  That appointment is dec 1.  
 

.  

[Freud]

2.5hr car ride later saw a worthless NP and again they don’t use ketamine and wanted to push Emgality and get this “physical therapy “!!!!  Mom threw a fit and they at least refunded us the money for the appointment.  The Pratice manager wanted to refer us to a friend that has ketamine clinics but I’m staying away from any crooks these people know. 

[Pebblesthecorgi]

I think it depends when you start getting disabled by the beast.  It also depends on concomitant conditions.  You defiantly have to be strategic to deal with this condition.  Disability is an option for the chronic or frequently episodic but to navigate that   quagmire  likely requires an advocate.  If you had the wear with all to make it to the level of a PA (not easy)  I would work as hard as possible to recover that license.   There are jobs working as a reviewer for insurance companies or in telemedicine which allow one to work at their own pace.   Good luck.  Life with clusters sucks but you have to play the hand you are dealt.