A question for the CH vets

[tryptamine]

Hey there. I am curious how you go about maintaining your job/career (especially the 9 to 5) during cycles? I've been having episodic attacks for 14 years now and have had to resign from three jobs in the past because of CH. I've not really had to maintain a real (one that I'd like to stick with for years) job yet because I was focusing on my education. The headaches reeked havoc on my education throughout college though and I'm really worried that I can expect more of the same if and when I obtain a good job. Especially since the CHs seem to be getting worse and more frequent with age. I just recently had a temp job at a law firm and the cycle lasted for about 90% of my employment there. It was utter hell most days... Quickbooks, pleadings, and the copy/scanner machine are all definite triggers. I tried to explain to them what was happening, but I'm pretty sure they had no idea what I was really going through. I'd often go in the stairwell as soon as I felt one coming on and do pushups till I couldn't move my arms anymore. I'd get some weird looks when they caught me doing abortive things like this. I really busted my *** off (even in the middle of attacks) just out of fear that they'd let me go and out of gratitude for them taking me on in the first place. When the job ended my boss said I had done an incredible job, but I worry they will give me bad references because of the condition itself. Comparatively, they were by far the most understanding and sympathetic to my situation of any employers I've had yet... and honestly that's really not saying much.

Surely its possible to hold a job? Do you just have to have really awesome/understanding employers? Do you just snack on mushrooms all day? Are there certain lines of work that are more accommodating to this condition? Sometimes I think that I should just try and get a job as a medical oxygen deliverer. Maybe that's my destiny. :

Anyways, any tips you could give me from your experiences would be appreciated. Just say you are able to hold a job, that'd be encouraging in and of itself. I don't know, something. This being unemployed(again) and broke(as always) is really getting to me.

[Pixie-elf]

Do you have Oxygen, and, do you know about energy drinks?

A lot of people who have clusters, and maintain their jobs use both, to treat and abort the headaches.

I don't have much 'job' experience, except for watching my nephews every weekday for 8 months straight. Which, was one hell of a job even with backup. I kept energy drinks on hand constantly. It helped a lot.

Hope things get better for you soon!

Mystina

[Brew]

In order of importance:

1. An understanding boss.

2. An oxygen tank under my desk at all times.

3. Understanding co-workers.

4. A reliable preventative regimen.

5. A decent health insurance plan.

[Bejeeber]

For me, pre-busting it was a matter of becoming ultra aggressive and focusing all of my off work hours into in the pursuit of knowledge regarding what other CH'ers were finding to be the most effective treatments, then going all out to implement what I'd learned.

[Full disclosure - I wanted to keep my job, but my primary motivation was terror in anticipation of more attacks]

The last time I took this approach when holding a job with regular hours at the office, I only experienced one non aborted attack at work during a 2.5 month cycle.

Also working in my favor was some luck and money!

Guissepi, a regular contributor on the other board, held down his job as a patrol cop (!) for around 30 years by always having an E tank with a DEMAND VALVE in his patrol car, which allowed him to pull right over and abort attacks within 5 minutes.

So I think an E tank in the car with a DEMAND VALVE is something for any CH'er in cycle trying to hold an office or other on site job to seriously consider. Not only is the demand valve the most effective delivery system, it conserves supply because the O2 only flows on inhale - a really big deal that can save our arses when away from home.

The past couple years CH hasn't interfered at all for me. A cycle tries to start up, and I simply knock it back down with mushrooms or most recently, RC seeds.

Results like these aren't so attainable for some, I realize, hence my gratitude that my luck has held so far, even if the money has run out once or twice.

[tryptamine]

Thank you I appreciate your responses.

I've heard of others success with energy drinks but have not ever tried them. At work when I'd get in a pinch I'd chug 2 or three cokes or some coffee. It wasn't very effective for me and I do not like the way stimulants make me feel, I'm pretty sensitive to caffeine I think. I get all and don't like it.

A little under a month ago I got my first O2 tank. I was able to try it at the end of my last cycle. I haven't had the opportunity to use it during a full blown attack yet but it has incredible potential so far. It'd be a bit cumbersome toting that tank around everyday but you gotta do what you gotta do I guess. The provider that I rented it from told me to be careful about keeping it in the car because it gets so hot here. Is it irrational to fear that tank letting loose in the car? How hot would it actually have to get?

"For me, pre-busting it was a matter of becoming ultra aggressive and focusing all of my off work hours into in the pursuit of knowledge regarding what other CH'ers were finding to be the most effective treatments, then going all out to implement what I'd learned." 

This is very much where I am currently. This board really is an invaluable source of information, you all are some great people.

I've been busting for years now with the help of mushrooms. They are a godsend, but every once in a while they don't work, or require multiple sessions, or I run out because I'm in a situation where I cannot grow, ect ect. I have not been able to bust with LSA, only abort. I thought about taking very low dosages of RCs before work but couldn't talk myself into it and just ended up using sumatriptan in its place. I'm definitely not a fan of the suma either. DMT might actually work really well for aborting at work, but unfortunately there are potential risks involved with carrying it and administering it in semi-public areas.

So it sounds like O2 is my best bet for situations at work. I definitely need to look into a demand valve. E-tanks go quick at 15lpm. What about composite tanks, anyone have experience with them? I guess the logical next step for me would be to do some research on minimizing burden and maximizing efficacy of O2.

Thanks again for your help.

[Bejeeber]

I've heard of others success with energy drinks but have not ever tried them. At work when I'd get in a pinch I'd chug 2 or three cokes or some coffee. It wasn't very effective for me and I do not like the way stimulants make me feel, I'm pretty sensitive to caffeine I think. I get alland don't like it. 

I think you'll find energy drinks to be more effective than just caffeine drinks, because it's the combo of caffeine and taurine in the energy drinks that is considered to be the real ticket.

At work energy shots can be good, since you can have them right in your pocket ready to down in one second at the first sign of an impending attack. And combining them with O2 or even push ups etc. can just make the abort all the more guaranteed and long lasting.  8-)

[tryptamine]

I forgot all about the energy shots. I've meant to try those in the past and it has slipped my mind multiple times.  I'm going to go buy a couple today when Im out and  about and just stash them till the next cycle so I dont forget again. Is there a particular one that you'd recommend or are they all pretty much uniform? Thanks jeeber.

[CHfather]

trypt, good for you for seeking all the information you can get! here are a few tentative answers:

red bull and monster seem to be the preferred energy drinks, though i have read of people using others.  i suspect they're pretty much all the same, as long as you make sure they have both caffeine and taurine.  some people like "5-hour energy" drinks, even though it doesn't have as much caffeine.  since there are different versions of redbull and monster (different levels of caffeine and taurine), you might test a few to see which are optimally effective for you (quick abort, less jitters).  at their websites, they tell you the ingredients in the different ones.

i've done a lot of reading about O2, and i'd say that there is no danger of the tank exploding from too much heat from being stored in a car. at the same time, the e tanks are not really so cumbersome, are they, so you could take them out in the evening.  you do want to secure them so they don't roll around--you could bust off a valve, which could be dangerous (the tank, i have read, becomes a missile).

regarding equipment, i'm not disputing jeebs's emphasis on a demand valve, but you might first want to get yourself an O2ptimask, which also makes aborting more efficient (and is a lot less expensive than the demand valve system).  Also, many people find that quickly downing one of those energy drinks before hitting the O2 speeds up the time required to abort.   You can get the O2ptimask here: http://www.clusterheadaches.com/khxc/

Demand valve info here: http://www.linde-healthcare.us/en/products_and_services/by_category/medical_equipment/high_flow_delivery_devices/index.html

A regulator of 25 lpm or more, and "proper" breathing technique (hyperventilation or something like it), can also help you beat back an attack more quickly at work.

Just in general in terms of your searching here, the search engine at the top left of each page will yield lots of information with the right keywords.  Oxygen is a frequent topic, and can be searched in the same way, over at www.clusterheadaches.com.

Finally, it's odd to me that you can abort with RC but not bust.  If you find yourself short on other busting supplies, I'd definitely give RC another try.  And it's not clear to me why you were hesitant to take a few before work, since for most people there's no psychedelic effect from small (or, in most cases, even relatively large) doses.

[ThatHurtsMyHead]

Triptamine,

Regarding your question about understanding employers:

I'm lucky to currently have an understanding employer.  They are few and far between.  I've had a few that were just downright A$$'s about my CH.  I was let go from a company (wow it's been 13 years now) when all I had in my tool belt was imitrex.  I couldn't think straight for days after an injection.  I was running on hardly no sleep, combined with the CH attacks during the day and night and imitrex fog = bad days...  Definitely know my job performance was cr@p at the time, so can't blame them too much.  They just had no understanding.  They let me go 1 day before my 1 year aniversary, which would have given me my signing bonus.  (I know my boss timed it as such, just so he could rub my nose in a little more dirt..  

Enough of the snivels. ha ha..  I KICK A$$ today!!, I can do anything I want and I DO...  ;D  You can to!! 

Try Monster in the blue can It's the Lo-Carb stuff.  I've found the sugar in most of the energy drinks gives me the jitters, tired etc...  The blue can monster definitely helps ease the attacks and combined with O2 is an unbelievable abortive!

PFW,

Jeff

[Brew]

Re: O2 tanks.

I keep a "D" tank in my car.

I keep an "E" tank in my office.

I keep an "M" tank at home.

All three are fitted with regulators that have a DISS valve and are ready for me to affix my demand valve with a few simple twists and one snug with an open-end wrench.

When in cycle, that demand valve and that wrench go EVERYWHERE I go.

Just keep the Boy Scout motto in the forefront of your mind.

Car. Office. Home. Rarely do I have to lug an O2 tank anywhere because there's always one less than 2 minutes away from me.

[tryptamine]

Thanks Brew and ThatHurts. Your post were very much inline with what I was looking for.  [smiley=thumbsup.gif]

[ClusterTown]

Work can be brutal for me during a cycle.  I have suffered from CH for about 15 years, but the past 4 years I have had very long and exceptionally hard hitting cycles. I  work in an office and there is no where to hide when I get hit. To abort I have used imitrex or other medications.  During a really bad cycle, the meds start to make me so sick I just take the weekend and get hit all weekend and took no medication.  It's brutal.

Basically, my main goal is to avoid hits at work at all costs. If I do get hit at work I get out of the building or just suck it up at my desk and wait for sweet relief and hope the height of pain doesn't last over an hour.

Recently I have been using redbull and a supplement mix of magnesium, melatonin, b2, and additional tourine.  So far so good too! I wish I had known about this technique earlier.  I just worry that it will start to lose it's effectiveness  :-[   Seems too good to be true.

[shaggyparasol]

Howdy all ya'll.

The Shaggy has held down several jobs and academic careers with the cluster friends in tow: Started my first term of college, got hammered in the middle of math class my first term.  Sweated and tried not to throw up each day during the cycle.

Went to military flight school and entered my cycle during ground school learning about airplanes and sweating my butt off, holding my head, trying not to be obvious.

Still didn't know what they were because they would just disappear for a few years.  Guess I am fine, must have been allergies??

After a good military flying tour on to the airlines (still oblivious about clusters, thought it was my eyes now because pilots can't have headaches).  Many good years there and now on to a whole different career (by choice, not cluster) and have since figured out my cluster head issue and found my relief.

Point being...I am fortunate that the mushrooms work for me as advertised on this site.  I hammer the cluster arrival so I won't endure the harsh attacks.  In the few weeks it takes me to thoroughly bust I add a lot of caffeine into the mix as well.  I am still experimenting with rc seed dosage (70 sinkers seems to be effective and no tripping effect). 

Tript, keep working to find your relief.  So many stories here to read through.  Fight back against the attacks!  Have your arsenal and be ready.  Manage your unfortunate neurological lot in life, don't let it manage you!

Good Luck!

--Shaggy

[Bejeeber]

Recently I have been using redbull and a supplement mix....I just worry that it will start to lose it's effectiveness     Seems too good to be true.

Hey CT - well it is good to have a back up plan, isn't it? I'd recommend getting some busting materials for prevention together yesterday, and high flow 100% O2 including an E tank with demand valve (kept in the car if necessary) for work hours aborts - it would be best to start procuring the O2 day before yesterday.  8-)

Oxygen links:

http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1226213955

[ClusterTown]

Yea, I totally agree.  Thanks for the links.

[weatherman]

Hey Trypt...

Jumping in a little late here (just caught your post), but thought I'd add my experiences.

I work in a 24/7 business.  We are required to do at least two shifts and I get the Day and Swing Shift.  Luckily, I only have to be in the office one day a week and get to work at home the other days.  Seniority has saved me from Night shifts for the last 7 years.

In three years since being diagnosed Chronic, I've only been HIT once while at the office, and luckily had the Oxygen in the car ready.  It is rare to even get hit while working for me, and we do 12-hr long days.  I explained to my boss and HR (very seriously) that if he sees me run for the door to not chase me, or report me AWOL.

Out of some 500 CH occurrences in the last 2 1/2 years, only about 4% have ever occurred during a work shift (at home or in the office), usually very early morning. 

I worked Day and Night shift, rotating every 30 days, for 10 years when I first started this job.  I really thought that must have made havoc with my hypothalamus, or at least helped to increase the severity of the allergies I got prior to all the CH fun.

I bet an Attorney would have a field day with the contributions that a jobs make (hours, stress, workload, etc) to causing CH.  Seems it can all be related to the hypothalamus somehow.

Anyway, good luck with your employer.  Explain to them (with documentation and doctors notes if needed) how serious your condition is and that you need to seek relief quickly sometimes.  CARRY THE O2, have it handy and ready.  It's a lifesaver!

The key is to not let it get to severe while in the company of others.  Someone will surely freak out and call 911.

PF days my friend........

weatherman