I still worked when I was chronic, but my situation may not have been comparable to yours. I have an office door I can close, a desk under which I still keep an E-tank ready to go, and a briefcase full of abortives. Most importantly, I have a boss that knows about my situation and knows that, even when I'm in the worst part of a cycle, I'll do what needs to be done to complete my job.

Not all jobs are like that, nor are all bosses. For that I'm thankful.

Chris H wrote on Oct 21^st, 2010 at 6:42am:

and I usually do a double dose of Imitrex.

If you mean the nasal spray or an injectable, doing two is NOT a good idea, unless they are more than two hours apart.  There can be a serious-feeling problem.  If you mean a 50mg tablet and you are taking 100mg, that you might want to talk about with your doctor. 

I was a Technical Project Manager with EDS.  I was let go two years ago.  The following fall I went into my 1st cycle, I am on the tail end of my 2nd cycle now. They both last from 1 to 3 months and I get his about twice a day.  Since I was let go from EDS I have decided to re-engineer my means of making a living.  I have always wanted to be an Environmental Engineer so I am working on my masters in EE.  I have never been to college before so I am starting from the ground up.  Plus I'm 38 so I'm usually the oldest person in my class.  Our daughter just had our first grandchild so things are a little hectic but really fun.  This last cycle forced me to drop all of my classes so I get to work on a book that I'v been putting off for some time.  So technically I'm not working but I sure am stinkin busy...

35 years of CH and I've continued working through it all with effective treatment and pain management.

seaworthy wrote on Oct 21^st, 2010 at 9:46am:

35 years of CH and I've continued working through it all with effective treatment and pain management.

Recently retired after a 30 year law enforcement career. As mentioned above, it takes a concentrated effort, being meticulous about med regimens, avoiding triggers and ALWAYS having a variety of abortives on hand.

Joe

Hi Chris..sorry you are suffering.  You've taken your care into your own hands with the different docs and meds you've tried.  What caught my eye about your post was the dizziness you mention.  Two things came to mind.  1.)  It may be a side effect of one of your medications.  2.)  If you experienced it before you started meds, you may have a condition called "Migraine Associated Vertigo".  I'm all too familiar with it.  It's another little known condition that can catastrophically affect your life, and yes it affected my job as well.  If you experienced vertigo attacks initially (I'm talkin' drop attacks where you couldn't get out of bed because the room was spinning..true vertigo...no just like you stood up too fast and you're lightheaded).. let me know and I'll PM you what I know about it and how I've learned to live with it.  If it sounds like you, you may want to mention this to your docs as it's an entirely different med regime you must be on.  I too was diagnosed at Cleveland Clinic.  I'm not saying you don't have CH..(I went back and read your posts) but it looks like you've tried an arsenol of meds and not getting relief.  You've been to some good docs and I would never second guess anybody...but I went to 5 docs & 3 neuros before I was properly diagnosed...Just putting it out there.   Take Care

Chris H wrote on Oct 21^st, 2010 at 8:10am:

a double dose of Imitrex injectable, usually about 15 mins apart.

Tha'd be what I meant.  While it's a relatively safe drug, one of its more unsafe uses is doing two so close together.  Read your insert leaflet concerning this, there was an instance that became very worrisome here for one.  Doubling can be a chancy practice. 

There is an Immitrex tip also on the left side bars.

Chris H wrote on Oct 21^st, 2010 at 6:42am:

I'm currently on LTD and have been hoping to get back to work, but so far have little relief from 1-2 daily episodes and a nasty 3/4 baseline. I have the added trick of severe dizziness and confusion accompanying episodes. I've been out since Feb and my job has been very accommodating, but by end of year I may lose my job. I'm currently on Lithium, Verapamil, O2 (15ml), and Imitrex abortive. O2 and Imitrex work only occassionally, and I usually do a double dose of Imitrex. How are others with chronic CH doing with regard to work? -Chris

I don't understand this part.

      Potter

Hey Chris,

I have episodic Ch and generally get cycles twice a year (this yr 3?) I also suffer from a condition called fibromyalgia.  I've been on disability since 2001 (in Australia).  Whilst I don't work as such, I keep pretty busy - raising a child alone and studying p/time.  (I started my degree in 2002 - and would you believe still going  :D)  Thankfully my lectureers and tutors have all been very understanding and have given me extra time when I've needed it.

Since finding this site back in 2005 I've found my cycles much easier to cope with (o2) I just wish I could control the fibro a little better  :-/

I'm sorry to hear that you are having such a hell of a time of it!!  Have you read or tried the clusterbusters method??

Good luck, keep us posted on how you are getting on. 

Kate

Hi Kate, Thanks for your post and kind wishes. My current plan with docs is to hopefully get to episodic versus the chronic ongoing HAs. Compounding CH with FM is, I'm sure, no picnic. Best wishes to you for recovery and pain free days. -Chris

Hey Chris,

I have suffered with CH's for 34 years; going undiagnosed the first 14.. During those 14 years I was given Nerve Blocks when ever I came into cycle (approximately every other year for a few weeks).

I've worked at my present job for 32 years; I've been Chronic for approximately 19 yrs of those years... and I've been Blessed through it all. My job have had 3 different owners... I've had 5 different supervisors and each and everyone of them have been very, very understanding.  In fact two of my supervisor would make me go home at times, yet they never docked my pay or made me use vacation or sick days when they did that.

Unlike Brew, I don't have a office door that I can close, but everyone is aware of what's going on when every I head to the conference room, a empty office or outside with my o2 tank.

Although I have missed days of work, came in late and left early over the years due to my CH's; I have continued to work (had too :))

I Pray that you will find some relief very soon.. But I diffidently would advise you to be careful on doubling up on the Trex Injections...

Peace & Blessings
Lady Luv

I don't know how much Verap you are using, but I used to get dizzy when using it and Lithium at 780mg and I think 480mg of Lithium.  I weaned myself off because of that and other issues and went to Kudzu.  It works as well for me as the other two and without the side effects.  YMMV.

The first thing I would do is buy another regulator day before yesterday and get a minimum of 25lpm, preferably higher.  I had given up on O2 several years ago because it would cut off maybe 5-10 minutes for a hit, and I felt like I was suffocating.  A little over a year ago another clusterhead gave me a 25 lpm reg and I bought an O2ptimask from DJ.  I now can kill a hit within 5-8 mins, and life is good.  I work in sales, and I keep on working.  All I ever use now as an abortive is a 5hr Energy or O2.

The next thing I would do if I were you (and can, I cannot) is go to Clusterbusters and give it a try.  I would LOVE to, but due to other obligations it is not an option at the present. 

Jerry

Edit to add: In most cases I think clusterheads working is directly related to a favorite quote of mine from Henry Ford, "Whether you think you can or you think you can't, you are right."

Chris,

You may also have to re-evaluate and change careers.  I've done that a couple of times.  It isn't easy to do so, but one does what one must.  I don't make the kind of money I would like to make, but I do what I have to do to provide for my family.  Of course, I've had over thirty years of this stuff to learn that.  When one is in the beginning stages of CH it is overwhelming, and the Drs keep throwing this med and then that med before combining different meds trying to find something that works for you.  THat is why we say it is so important for you to educate yourself.  If you wait for the Drs to do it you are in for a world of hurt! 

Hang around, read as much as you can, ask questions, and we'll do all we can to help you get yourself on your feet again.  You've got a great group of caring people here who will help as much as you will accept.  You may get a strong boot in the tail (I have a few times) and you may get a hug.  Both are needed depending on the circumstances, so be ready for both.  Either way we want to help.

JErry

In case you haven't read the O2 info, I've given you a link below. It will help you understand proper O2 use, such as a NON-rebreather mask with a good seal.

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

Many of us find the 1 liter bag on a standard non-rebreather empties too fast and this can cause failures to abort. The size of the regulator can help with this, and a good mask like the O2pti available here on the CH.com store, this mask is designed just for CH and you can't beat it.

Hope this helps,   Don