Hello all. I recently had a two year break from the beast but mow he's back worse than ever. Responsive to almost no meds. Oxygen may work one time but not the next. I tried the pred taper which usually slows it with no success. Verapamil seems to be triggering a hit every time I take it so I have started back on topomax with which I had some success but it gave me kidney stones.
I am getting hit 6-8 times a day as opposed to 2-3 times in the past. I can take trex but no matter what the beast returns 1-2 hours later. I've tried the lemonade and calcium citrate and probably drink 2-3 gallons of water daily.
In the last week and a half, I have missed work 3 times and have left early 3 times as well. I spent last night in the ER as i had taken so much meds with no success that I had no other options.
I am an inventory supervisor at Wal-Mart and have been with the company for 3 years. That said, I am starting to feel that because I am missing so much, I may be now be at risk of losing my job.
Are there any other options that I need to explore(surgery,etc.)? I can't afford to be without work as I have to support my family and don't see disability being a possible option as I've been denied in the past.
I'm at my wit's end and very frustrated/confused!

Pfunk

How long and at what dosage have you taken prednisone and for how long have you been taking Verapamil concurrently? Given that you have had a two year break I take it you have previously always been episodic?

If you haven't tried Lithium as a prevent you might talk with the doc. It's been very effective for me for many years. Supposed to be more effective for chronics but I'm episodic and it works for me!

Don't get thrown by the Hollywood stereotype of the drooling mouth breathing zombie. We take it at doses where you hardly even know you're on it.

Hoping you get a break soon buddy, high cycles really suck.

Joe

lithium would be my first recomendation then elavil and zyprexa.  I would take a recomended leave of abcence from work signed by a dr.  I know walmart is terrible.  But try to stay optimistic.

Thank you to all for your input so far. And Delta Darlin, you're right, I am the same Pfunk that has been lurking around Ch.com since about 2000. As for the reason I am listed as a CH Junior, I had some computer issues a while back and my profile got deleted. I got in contact with DJ and he was gracious enough as always to help me get set back up though I still had to start from scratch.
Delta D', I have and still am considering the leave of absence option at work. I have about 7 days of sick time left to use and 6 days of vacation time. The thing is that Walmart changes their policies like I change my socks so I have to make sure I do it straight by the book. I am thinking about taking leave for about a week after this pay period and saving some of my time. I don't want to use up all my time at once and still be in cycle. Then I'd be left taking time off without pay.
As for some of the other info asked for. I have been back in cycle now since Feb 13. 3 more days and I would have gone exactly 2 years PF. As soon as I started feeling so much as shadows, I went to the doc and started my meds. 720 mg verap., kudzu, oxygen, imitrex, etc. My cycle normally lasts 3-6 months but it's different this year as they started in  Feb rather than Oct and the number of hits is greatly increased as well as the intensity(never less than k7-8). I am on my 2nd pred taper(final day) and had no success at all with it this go round.
I have recently stopped the verapamil and started back on the topamax as I seem to be getting hit every single time I take verap. 125 mg a day of top. Only been 2 days now and the kidney stones came the last time I tried it. So I'm giving it another shot and taking all the precautions possible to avoid the stones this time.
The lithium is something I have yet to try. But it sounds promising as I have read so much about others and their success with it. My doc is usually very good and open to exploring new options. How much and how often should I take it? I am more than willing to give it a shot as , if there is even the slightest chance of even one less hit, it was at least somewhat successful.
Thanks again to all!
Much Luv and PF Wishes
Pfunk

Pfunk - Another thing to consider is that sometimes verapamil and lithium work wonders in combination with each other, where either one alone doesn't do shit. This was the case with me for awhile.

When I was taking both, I was on 480mg verapamil and 900mg lithium each per day. Got rid of the pain like a charm. Your doc will want you to have regular lab monitoring of lithium level and kidney function - each person is different as the line between therapeutic and toxic can be a fine one.

That said, I highly recommend the clusterbuster route.

The FMLA has been suggested but I am unclear how to go about it. In the past, I have always worked for myself or for my family so never was at risk of losing my job when things got tough. But with the economy being what it is we had to close our businesses and I am faced with this issue for the first time. Any help or info that anyone can offer on this topic would be greatly appreciated as I am totally new to it.

Also, if you're not using your sick/vacation time, you're still not coming out on top, since there is no pay involved when using FMLA.

As far as dosing with the lithium, it's based to some degree on your body size but also on how your body processes lithium.

First time I went on it we did 300 mg for a few days, blood draw, 600 mg for a few days, blood draw, then 900 and blood draw. Settled at 900 mg as a good blood level for me. For many years that worked great. Have since had to kick it up to 1200 mg a day to get relief. Now I just ramp up to 1200 mg over a 10 day period, after I've been on it a few weeks I go in for blood work.

As high as that sounds it's very low compared to those who take it for bi-polar issues. You'll find you pee like a 9 month pregnant woman.......very often!  The lethargy you get is easily defeated by a cup or two of coffee.

As Brew mentioned, the CH Cocktail of verapamil AND lithium has been effective for some who found neither med helpful by itself.

Hang in there.

Joe

Check into the FMLA, I am a supervisor and deal with it all the time. We do allow people to use their leave time, so they get paid while off. To be eligible, you must have worked the equivalent of 1280 hours in the last 12 months. Your doctor will be familiar with this paper work and you would most likely be an intermittent user of the FMLA. I would be intermittent for an undermined time and have to be reevaluated at the employers reasonable request. I have employees update the FMLA with the doctor every year. Your case is absolutely worthy of FMLA in my opinion. I work for the state of California, so wal-mart may interpret the law different. Please look it up on line and ask your employers human resource person.
If an employee is on FMLA, I am unable to discuss absences in the employees evaluation. I am unable to take action against the employee for absences. The max time that an employee can take using FMLA is 12 weeks in one year. The employees I am referring to are union represented, so I follow the law of FMLA to the letter. Per our policy where I work, as a supervisor, I am required to contact an employee and offer a FMLA packet to an employee if he or she has been out of work due to illness in excess of 2 days.
Best of luck to you and hope for pain free days soon.

Steve

Have you tried Zyprexa (samples)?  It is an anti-psychotic but it works good for many as an abortive.

Lithium is also a good idea.

Higher flow O2 (more than 15 lpm)

New mask for O2 (they sell good ones here)

Energy drinks (caffeine AND taurine) at first sign at work (WalMarts have them!!!)

There is a new triptan that is air released. (samples)

These are some ideas.  (samples) means that many docs have samples of these you can try.

Pfunk wrote on Mar 30^th, 2010 at 2:03am:

Well, there you go. Having your doctor fill out paperwork reduces the frequency of cluster headaches.

So, yesterday I put in for my LOA. And I am now on leave for at least the next two weeks. As soon as I walked out the door of the backroom, my direct supervisor, who actually holds exactly the same position that i do, starts talking trash about me to my crew. She told them that by the time i come back, my job will no longer be there and I will have to take a lower paying job. As soon as she said it two of the guys went on break and called me to make sure I was aware of what she was trying to do.
I told them not to worry about it as I just kind of laughed it off myself. First of all, I've already spoken to a lawyer today about it and FMLA states that I am allowed 12 weeks of medical leave before I can be replaced. And if when I come back, I still can not medically perform my job duties they have to give me a job with comparable and benefits. I have also already spoken to HR about her and she can get in a lot of trouble if she has already started trying to replace me(even as far as losing her own job). She obviously thought I wasn't going to do my homework.
So thank you to all of you who have offered help in this matter. Everything posted has been extremely helpful. I hope to be going back to the doc on Friday to speak with him about getting me started on the lithium. Do I need to start the verapamil back as well(since I stopped taking it when I started taking topamax) as I noticed that most of you who are taking lithium with success are taking the verapamil as well? Topamax worked well for me in the past but I've only been back on  it for a week and a half and don't believe the level that is in my blood so far is enough to make a therapeutic difference as of yet.
The lithium,though, is something that I'm really interested in trying as I have never taken it before and I seem to be hearing lots of success stories about it.
Much Luv and PF Wishes-
Pfunk