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

[Freud]

Sorry if this is a depressing topic or is triggering but how do you earn a living while dealing w no sleep and the beast striking at any time. Any suggestions appreciated. I used to be a physician assistant in heart surgery before bipolar and CCH struck. My certification has lapsed and that’s off the table for now.  I have a huge gap in employment, don’t get call backs for medicine device sales/ support specialists jobs I’ve applied for (thought I’d never go to the dark side).  Can’t focus to retake my boards, probably couldn’t get a license until I have a year of mental health stability (screwed myself trying to stay off blockers and busting). PTSD gets triggered then eventually manic.  They would give me a ling acting drug w over a year elimination time so I waited it out then stopped my meds to bust. It was a vicious cycle but a risk I was willing to take. But not any more, this last go around I was sure all blockers had cleared my system and the busts showed no appreciable impact sadly and costed me a hospitalization.  As well as lost me the intranasal nasal ketamine and almost oral.  But doc knows how bad I suffer and didn’t cut me off.  I only recently got to explain I was off my meds as he would not discuss changing my meds without it triggering a big “NO, you got hospitalized!!!”  Thank god he’s not a heartless man, but pain docs have a way of making you feel like you’re drug seeking when you’re just trying to get through the day.  I agree opiates can cause just about anyone to become drug seeking behavior, just for the physical addiction/ withdrawal let alone psychological addiction. However after being in opiates in and off since I was 14, I can say the ketamine is nothing like it. No withdrawal or physical addiction, just a desire to be able to abort my CHs.  Currently it takes ketamine and oxygen to abort.  If I don’t have both then it’s taking 200mg of ketamine to abort most but not all. And unless I get on oxygen before the pain passes kip3/4 oxygen will cut back the pain some but won’t abort.  Oops I digress. 
 

tldr (too ling didn’t read): How do you earn a reasonable living w CH?

[Freud]

PS my hat goes off to all you with kids/ families. I don’t know how you pull it off. 

[Shaun brearley]

Im sorry your finding it so hard to work . Im a transport manager for the biggest family run coach company in UK . We operate 165 coaches all over UK and europe ive struggled during this last CH cycle had to take a bit of time off work , but my boss is really understanding so im really lucky . I can't really give any advice as ive always been employed whilst suffering with this condition even when in military for 7 years 

[BoscoPiko]

This post made me a bit sad as truthfully... it's been hard to maintain a job. I'm not a sufficient point of contact but I do try and be real. I really liked your  shout out to folks with kids as they are miracles. I chose at a young age not to procreate. I don't know exactly why but babes were just not for me. I chose animals and being true to them has been challenging at times. I'm just happy that I never made another me. Anyhow I'm new to cluster 3 years .. I get brakes.. you do not. So for that my heart hurts. I remember the start of this then getting diagnosed.  I spoke to my husband about euthanasia as I did not feel I could be strong enough. Turns out I underestimated myself. I try to whisper that fact to myself everyday. My situation is different as we own the company in which I work. You will find even with the constant torture you are in that you are STRONG!

[Freud]

Sorry it made you sad. Just trying to figure out how to make a living and pay fir my meds and have some quality of life.  
 

on the subject of euthanasia I was reading a story of a guy who was in a country that had euthanasia and he applied fir it if gamma knife didn’t work. There was no follow up on his outcome though.  He had kids and a wife. So sad.  

[Freud]

On the subject of gamma knife has any one tried it or know some one that has for CH?

[Shaun brearley]

Buddy seriously get euthanasia out of you head . Plus from what ive seen on posts the gamma knife isn't a nice way to go plus not great results . You can get through this . Ive got kids at home i work its hard i understand that . Im lucky as im episodic not chronic like you it must be really hard . Plus i understand the cost for meds in US is ridiculous where in UK we get it free you can't just give up , life is to precious . 

[Freud]

I’m not sure what your whole story is but we don’t all suffer the same way or have the same pain.  Euthanasia is not the same as suicide. And it’s not in my country.  You can’t just tell some one who’s chronic not to think about it.  Sadly life isn’t that easy.  I’ve been through more kinds of pain than most people should ever have to endure. Had my skin peeled off every day when I was burned fir months in end.  My CCH is that bad.  I don’t give up I’m exploring reasonable options. I wish it was that simple. I have living supportive / crazy family. But no kids just an aging dog.  No dependents otherwise.  

[Freud]

When you go from doing heart surgery to not being able to do basic tasks of daily living fir 5/6 years w only a one month break after your first bust and never getting much results since.  W 6-10 attacks a day it takes its toll on you.  Vitamin D helped fir a short period then nothing.  Try again w D.  Never gave up but you need a Dr to follow labs and insurance that will pay fir it.    so far I haven’t given up I’m still here. Wanting to die and during are two different things. I don’t harm myself like other do (punch walls, smack head in the floor or walk to knock themselves out, drill holes in head or shooting self in head only to survive and still have CH is not my style). But when your CH is as bad as mine your brain wanders.  I’ve accomplished a lot in life. Save countless kids w congenital heart disease. Adults as well. Serious girlfriends, bla bla bla.  I don’t judge others here, I listen and try and help.   Some people don’t believe in euthanasia but I’ve practiced medicine fir over 10yrs before I had to give it up.  And some of us are DNR and people just don’t get it.  (Do not resuscitate).  Early in my career I couldn’t believe young nurses in their 50s would get DNR tattoo Ed on their bodies.  But I get it now.  

[Shaun brearley]

I understand mate ,im not judging you believe me and yes ive been at that point where my mind has wondered in that direction ,but again life is precious as a ex practicing heart surgeon you should understand that . You saved lives. Im just trying to help . I will keep my mouth shut sorry if you took my post the wrong way 

[Shaun brearley]

Just so you know in the last 12 mouths ive had 2 mouths pain free and had between 8 to 14 attacks aday most attacks during the night . Im exhausted due to no sleep. Ive had CH since i was 13 im know 52 . Wasn't diagnosed till i was in my 30s so had to cope with no med till then so yes ive suffered to buddy . Like i said only trying to help 

[BoscoPiko]

12 hours ago, Freud said:

Sorry it made you sad. Just trying to figure out how to make a living and pay fir my meds and have some quality of life.  
 

on the subject of euthanasia I was reading a story of a guy who was in a country that had euthanasia and he applied fir it if gamma knife didn’t work. There was no follow up on his outcome though.  He had kids and a wife. So sad.  

It's ok. I suppose I feel bad for anyone with this un-welcome resident of the brain. There are a few states that allow assisted euthanasia but I assume it's a sticky mess to have it approved and even though it has crossed my mind in moments of agony I could never do that to my husband, family and friends. As for employment with CCH that's a tough one, now days with the pandemic working from home is pretty popular and many state agencies will not be going back to the in office way of work as it is more cost effective. You sound like a very bright individual and while it may take you a bit longer to achieve your goal due to CCH you will find a niche that works for you. 

[xBoss]

It's a career buster for sure. We all have similar but very different paths with this mess. My life trajectory was changed as well like most of us. I try to take it as a challenge but it can def. be a downer. Like Bosco said, that work from home bit is huge now. I try to make money from several streams and one of them is making stuff that I sell. It's been a while but I used to crank out some cool stuff and sell the heck out of it.

 

[devonrex]

This will be the fourth time I have tried to respond to this, you did warn it was a trigger. In part of the same boat, was working as a remote site medic, with chronic but at that time it was 2-3 a week, never enough of a pain free break to be considered episodic, now even that was getting tiring, so went and tried topirimate, it helped, down to about one a week, then the kidney stone, then being taken off the topirimate, then it went insane, 6-10 a day and just like that I was done that line of work, fast forward several years, took a long time to realize this is the new normal and am exploring home business, things I can do when it is not a kip 10, or in between hits, can work my own time in my house. 

Even something small like painting miniatures can bring in money, crafts, editing. I had to kind of go from a 'job' mindset to a 'anything to bring in money'

 

[Shaun brearley]

Hi devonrex. Im on Topiramate have been for last 10 years know . Im lucky im episodic.  The trick with toprimate is you need to have them in your body 3 months b4 cycle starts and you need to drink plenty of water to stop kidney stones . Not saying it stops cycles but i have skipped a couple of cycles. 

[Icantdance]

This topic is relevant to me at the moment as well. 21st year as a cluster head. The only treatment that has ever worked for me was high doses of prednisone, but does not work anymore and caused me to become diabetic. I am episodic amid get hit the same time every year with 3 years being mild and manageable and the fourth being a battle on every level. I am two months in to a bad cycle 7-9 hits a day with 2-3 total hours of sleep. I just took emgality with no effect, in fact, I think a couple hits are more intense since the injections and I had a mild allergic reaction.

I work as a high school assistant principal and athletic director. Have not worked since the start of the cycle. FMLA gives me 12 more weeks before I lose my job and insurance. Hoping the cycle ends before then, but if the pattern holds, it won’t end until May/June. I obviously am not safe to perform my duties and can’t do them from home. So, the added stress of potential income and insurance loss sure does not help my efforts to battle these things.

Looking for options at the moment, but it is going to have to be a home business that I manage as no one else is going to hire me at my age (53). Was thinking about disability, disability retirement and the like, but it is so difficult to get. Actually, it is easier if you have migraine, tension headache or anxiety. I have 2 of the three with cluster cycles, but still too difficult to get.

Unfortunately, I too have had negative thoughts. I thought about getting a little better life insurance policy and having an accident so my family would be taken care of. Honestly, I think about that at least two times a day/night during kip 9-10 attacks. I do not have the courage to follow through. There are so many things I want to see/experience and I know what it is like to have a parent commit suicide as my father did when I was 4 yo.

Anyway, maybe all us clusterheads should band together and start our own business of some type…lol Sorry to ramble, thanks for listening. It is 2:30am and I am between hits. Have a good night y’all.

 

[Freud]

23 minutes ago, Icantdance said:

. I do not have the courage to follow through.

Nah it’s more like you have the courage to fight and aren’t selfish to do that to your family!  Please try and find a doc for oral and nasal ketamine. Have you tried busting or the vitamin D protocol.  It works for most people!

[Shaun brearley]

Buddy really look at busting . It works for so many people on here . Mm or LSD.  LsD is the best if you can get hold of it 

[Icantdance]

Thanks for the encouragement. I am on my third neuro. I have tried nasal ketamine and am on Batch’s vit D protocol. Doc said Emgality is the only thing left besides vagus nerve stimulation. I have not tried busting for fear of legal repercussions with my job. Mm seems easier to obtain or produce myself, and I am looking at all the info here about that and plan to move forward. Thanks again. Now to get growing and starting my online store.

[CHfather]

@Icantdance

Rivea corymbosa seeds.  Work fine.  Legal to buy and possess in many places (e.g., most US states).  Unlawful to prepare (by soaking in water) or consume.  Not gonna show up in standard tests.  Get started for more info by clicking on the blue "NEW USERS" banner at the top of every page.

(Are you saying that neither oxygen nor triptans such as Imitrex or a nasal spray have ever worked for you???  That is extremely rare.)

Edited October 23, 2021 by CHfather

[Freud]

@Icantdance mm and L are hardly ever tested for and clear your body very quickly. Unless they do hair samples you’re fine. Please feel free to contact me for growing help. I have made several helpful posts over the years.  Err just got another hit. Bbl

[Shaun brearley]

As freud has said LSD is hardly ever tested for . Im a transport manager in uk when needed i drive a coach . Not within a couple of days of taking it but after 3 to 4 days im ok 

[Freud]

I’ve been admitted for psych evaluation and the first thing they do is test you for drugs.  I’ve dosed the day before , less than 24 h told them I took it and they have told me “that’s not tested for”.  Unless it’s a government organization FBI, CIA, NSA type job it’s not tested for. There have been several CB members that work w the department of corrections that bust.  One kept it a secret, the other I know personally and his boss was supportive as he has witnessed said CB member get hit w a kipp 10 and ran to the welding tank to hit the O2...   Another person who has YouTube videos went so far as to have Stim implants in his brain that didn’t work bc he didn’t want to do something illegal but finally tried busting after a police friend told him he was being crazy.  

[Icantdance]

On 10/23/2021 at 9:02 AM, CHfather said:

Are you saying that neither oxygen nor triptans such as Imitrex or a nasal spray have ever worked for you???  That is extremely rare.)

@CHfather I am for sure a rare one. Have you ever watched a drug commercial on TV? At the end when it says really fast that 1% of people...blah, blah, blah ... I am the 1% lol. I am even super affected by caffeine as one cup keeps me up for hours and hours..

I have tried O2 every cycle for 21 years with every mask or attachment imaginable, and it does not work for me. I keep trying though.  Unfortunately, I am allergic to triptans. Nearly died from a reaction to imitrex, but the doctors did not think it was from that until it happened again with Zomig.

Thanks for the info, I will look into that. At this point, I have nothing left to lose.

[CHfather]

@Icantdance  So sorry to hear this, and the way CH has affected you and your life.  What an accomplishment that you kept working at a job that I am sure is very demanding and even stressful for so long (probably you were in other education jobs before your current one -- they're all demanding and stressful, from what I've seen)!!  May busting and/or D3 be an answer for you, as they have been for so many.  (You don't have to answer this. I'm just wondering whether any of your doctors ever tried octreotide, which is described in several places as a useful possible abortive for folks who don't tolerate triptans. Not as good as triptans, but seemingly more effective than nothing to help abort attacks. I have no idea whether octreotide would block busting. It's a completely different thing from triptans.)

I hope you'll stay here and get help from the folks with experience.  I would like to suggest that you start a new thread in the "Theory and Implementation" section, since we generally refrain from posting about busting in this part of the board.