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        Cluster Headache Help and Support >> Cluster Headache Specific >> Got canned today
        
(Message started by: suziq on Jan 27^th, 2006, 8:07pm)

Title: Got canned today
Post by suziq on Jan 27^th, 2006, 8:07pm

I was fired from my job today. I'm a full-charge bookkeeper and I was fired on the grounds of the costly mistakes I made. I did make several mistakes (been very forgetful) in the past two months - I'm in cycle. I did not tell them I was a CH'er at first because of my past, but fessed up a couple weeks ago. I just started the job in Aug '05.

There's more to the story, too. The IRS has a hold on the owners personal finances, and her co. is financially in ruins. So, she has been taking it out on me. She's bi-polar and has a serious spending problem. She accused me of not being loyal and unable to trust me becuz I kept the diagnosis of CH from her. (Of course, she kept the IRS situation from me when I interviewed for the job!)

I was finally diagnosed last summer with CH. I also get migraines (and menstrual migraines.) I am single, just turned 34, no kids, 2 cats, wonderful mom, wonderful boyfriend, but very depressed, in pain, and even though I know I did a really good job for her, my self-esteem is zero.

Oxygen is not working for me - I'm ordering the clustermask tonight. Prednisone gives me a good day or two. Started verapamil two weeks ago, slight improvement, but recent stress is not helping. Allergic to Indocin, Lamictal and Sulfa. I like Relpax, but am restricted to how much (relpax could heart problems.) Don't like trex side effects. Scheduled for IV steriod therapy and DHE for 1/31 & 2/1/06 - nervous. Seeing Neuro at Univ of MD in Balto City since May '05 - have seen five neuros in 16 years.

I tried Johns Hopkins Pain Mgmt Ctr (Mar '05) and they just wanted to perform ganglion blocks on me - HORRIBLE experience - and when I went to their ER begging for help for my pain - they tried to admit me to the Psycho Ward! Very disappointed in such a prestigous hospital.

I feel lost. Keith, my boyfriend, said to just relax and see what the DHE does. My neuro approved my request to use my AFLAC short-term disability. I need to find the right meds to work and heal my head/body.

Luckily, I'm okay financially. I worked for a company since high school for 13 years - I believe I had CH during that time, becuz I went thru cycles. Towards the end of that employment, my boss and his brother (and co-workers) were psychologically abusing me. I was called a "part-time m-f'er" and ignored (I was the only girl - it was another small business - all guys (family/friends.) I didn't realize til after I walked out, how bad they were treating me - I felt like I deserved it becuz the time I missed inconvenienced them.

The next job I took, I made lots of money but between the hellish Wash DC Beltway traffic and the big corporate stress, I had to quit for my health. CH's were real bad. So, I took a small, close to home, less-stress job and still found abuse towards me for my disorder.

Thanks for listening to my story (pity-party) and I apologize for the diarrhea of the mouth! I've been in the background reading your posts and responding here and there. It feels good to have shared with other CH'ers. Has anyone else been harrassed/abused at work for their disability? Has anyone else received the IV steriod therapy and DHE? What was it like? I've had several bad reactions to meds and get nervous trying something new.

Wishing you all PF days & nites! Thank you again-
Suziq

Title: Re: Got canned today
Post by chewy on Jan 27^th, 2006, 9:29pm

If you did not disclose the disability until after numerous mistakes were made then you can not claim you were being harassed because of a disablity. To do so sets everyone back that has been up front about their disabilty from the get go and were legitamately harassed because of it. My HR file has all my CH material piled into it for my protection in the event that my condition effects my job. I would advise ever sufferer to do the same. That being said.

The IV DHE was extremely effective for me in breaking the longest most painful cycle of my CH career. I've been a sufferer for 30 years. The infusion is a simple IV and they will place a heart mintor on you. Standard procedure. They also gave me a sedative so I was able to regain a lot of sleep I had lost during the cycle. The DHE infusion accomplished what no other med was able to do for 9 straight months and I walked out pain free.

Title: Souds rough Suzi..
Post by Richr8 on Jan 27^th, 2006, 11:48pm

..I guess all that you can donoww is get through this cycle and go forward from here. The O2 (just ordered my mask also), pred, and Verap have helped me, not great , but quite a bit. In your next job, which you will certainly get as you seem well qualified, I would jump right in with the disclosure about your disease when your next cycle hits and hopefully you will fair better. Of course you will not Know until then. My employer was extrremely sympathetic and helpful when presented with this letter (http://www.ouch-us.org/chgeneral/dealwithemp.htm) , and thank heavens because that stress just adds unthinkable burden. I actually struggled through my prior thirteen epiodes without disclosing and it was an absolute nightmare. It's a wonder anyone hangs on to a job while bearing this.

Title: Re: Got canned today
Post by RichardN on Jan 28^th, 2006, 1:25am

Hi Suziq

What flow rate are you using the 02? Most of us use 12-15 lpm. When I first found this site and went back to the doc and DEMANDED an 02 script, it was for 4 lpm and was provided with an 8 lpm regulator with a canulae (little nose thingy) . . . useless for CH especially at 4 lpm. The 15 lpm regulator and non-rebreather mask did (and still does) the trick . . . and I will be getting a Clustermask very soon.

I don't remember the dosage of Verapamil I was started on (low though) and I didn't get a PF day until I reached 240 mg (had three that night, but that first PF day was a real milestone for me. Got as high as 360 mg. Many here take MUCH more and some with combinations of other drugs (like lithium). Many experience constipation with Verapamil (I did), especially in the higher dosages .. . . . can also lower blood pressure to uncomfortable levels . . . but I'm a GHOF and have other medical issues.

Make sure you copy the "letter to employers" for the next go-round in the work force . . . a real eye-opener for those who think you're just a wimp dealing with your headaches.

Be Safe, PFDANs

Richard

Title: Re: Got canned today
Post by zwibbs/Scott on Jan 28^th, 2006, 2:48am

Hi Suziq---sorry to hear about your job. Let's rid the Clusters first----you said that you started Verapamil two weeks ago--depending upon the dosage--right about now it should be taking effect ! I was depressed when after taking 240 mg of verapamil I was still getting hit---then when I rose to 480mg ---pain free nights !!!And that was within two weeks after starting it. You simply cannot let your self esteem be zero---that is not acceptable---if YOU don't believe in YOURSELF--who else will believe in YOU ?!?!?!?!? RAISE YOUR SELF-ESTEEM AND GO OUT AND TAKE NO PRISONERS !!!

Title: Re: Got canned today
Post by suziq on Jan 28^th, 2006, 8:19am

Verap is only 80 mg/day and 02 is 10 lpm. I'll see my neuro on Tues after the therapy and bring this to her attention. (She's not very aggressive with any therapies, as I pushed for the Verap on my own after learning more about treatments at this site.)

I know things will get better - And thank you so much for the replies - it's a relief to know there are others around and I'm no longer alone.

You all are wonderful! Thank you!
Suziq

Title: Re: Got canned today
Post by kcopelin on Jan 28^th, 2006, 8:22am

Suziq,
I totally know how it feels to be berated for having "headaches". Have had clusters for 25 years now, and back in the beginning I put up with alot of crap from co-workers and supervisors (I was in the Air Force). Since then I have quit two jobs because the headaches interferred with my ability to be effective. But I did find that honesty is the best policy. Gotta tell 'em-the letter is really good, and then the employer has to really try to accomodate your disability.
Next time, consider interviewing your prospective employer. Ask yourself...Do they seem to be a-holes? [smiley=bash.gif]
Okay, they may be on their best behavior during your job interview, but look for clues.
In the meantime, you certainly sound like a person with alot of job experience who happens to have CHs. 13 years with one employer doesn't sound like a flake to me, or a loser. Sounds like someone with a good work ethic. Get through this cycle, one day a time, hope the DHE gives relief (I've never tried it) don't give up on the O2 (need a good mask and crank it up ) and hang in there.
PFDAN
kathy

Title: Re: Got canned today
Post by RichardN on Jan 28^th, 2006, 11:28am

Hey again,

I believe Verapamil is a "taper" drug . . . start low and then increase til effective. But consensus here will be that 80 mg won't do it . . . the "pro s" will be along to verify I'm sure. You also need to be aware of the Verapamil "buzz" at higher doses . . . can be disconcerting if you don't know what it is . . . . just don't drive for an hour or so til you get used to it.

Make sure you get a 15 lpm regulator (my med equip store had to order mine). They can also be had on e-bay. You didn't mention what type mask you're currently using. If you don't have one, acquire a non-rebreather mask (the one with the bag) to use til your Clustermask is delivered . . . .MUCH more effective.

Identified any triggers? Alchohol is major trigger for me. If you drink and alchohol triggers your attacks . . . . consider downing a couple of beers/drinks before your next doc appt. A full-blown attack in the waiting room will get everyone's attention. The "Try this and see me in six weeks" direction will seem as ridiculous to them as it does to us when they SEE the agony involved.

I too thought I was alone with the beast til' I came here. You're not . . . and we all truly understand your pain.

Be Safe, PFDANs

Richard

Title: Re: Got canned today
Post by chewy on Jan 28^th, 2006, 11:50am

Verapamil 480 mg.

240 2x per day.

Most will suggest not using extended release

Title: Verapamil
Post by Richr8 on Jan 28^th, 2006, 11:56am

480mg @ 120mg 4 x a day

And oh yes, pump up that Oxygen. It's a real life saver.

Hang in ther Suzi Q! You are niot alone.

Title: BTW
Post by Richr8 on Jan 28^th, 2006, 11:57am

That's what I am using for reference, not script for you.

Title: Re: Got canned today
Post by sandie99 on Jan 28^th, 2006, 2:28pm

Susiq,

[smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif]

Hoping for a bright future for you,
Sanna

Title: Re: Got canned today
Post by FramCire on Jan 28^th, 2006, 9:10pm

Make sure you talk to your Dr about your Verapomil dose. Anything above 480 and i think they suggest an EKG. I am currently on 480 (240x2) after starting at 120mg.

Also, I just started on 9 mg of Melatonin and the first 2 days were worse but the last 24 hours has been a lot better. I have had nothing but shadows today and slept the entire night (my kids were at my in-laws and I only woke up 3 times, but none of the times with a HA worse than a shadow).

I hate trying new drugs but once you find one that helps you, it will be worth it big time!

Title: Re: Got canned today
Post by zwibbs/Scott on Jan 29^th, 2006, 3:20am

Anything above 480 and i think they suggest an EKG. I am currently on 480 (240x2) after starting at 120mg.
---------------------------------------------------------------------------------------------I don't know about an EKG, but any Doctor worth his weight in salt will not prescribe Verapamil if your blood pressure isn't fairly normal....The more important number is the second one----i.e.---140/80------anything over 80 is NOW considered a risk for ANY medications.PLEASE ASK YOUR DOCTOR ABOUT YOUR INDIVIDUAL BLOOD PRESSURE.

Title: Re: Got canned today
Post by suziq on Jan 29^th, 2006, 4:52pm

Thank you for the responses. Gosh, it's really helped!

The 02 mask is just the regular face mask they gave me with the tanks.

CH - Stress is the main trigger. I don't drink alcohol anymore (I miss my fo-fo daquiris!) I don't smoke and I don't do drugs - painkillers don't even ease CH pain.

My migraines can be triggered by cigarette/cigar smoke, perfume, burning candles, sunlight, gasoline/vehicle fumes, oil-based paints, etc.

What are "shadows"? I'm still learning the CH slang.

I've done a lot of thinking since friday night. Right now, I'm going to focus on finding the right meds to ease the beast and then work my way back into the work force - with honesty. I enjoy working in the accounting field and couldn't imagine doing anything else. I enjoy helping others and I haven't been myself since the beast showed it's ugly face -

I'm grateful for ya'll - if you need anything, please call on me - Suziq

Title: Re: Got canned today
Post by suziq on Jan 29^th, 2006, 4:59pm

Dahhh! I forgot that the weather influences my CH. When the barometric pressure is decreasing from the "30.00's" it triggers them.

Sorry about that - as I'm very forgetful during my cycles!

Take care, Suziq