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

Yeah, I've heard Wal-Mart can be brutal on their employees for missing work.
Hopefully the vets will chime in and give you some advice.
All I can tell you is to try to find a good neuro, and spend your free/painfree time educating yourself. This message board has helped me quite a bit.
Hang in there.

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?

Pfunk,
Couple of things and don't know if they will be helpful or not.  I know you're one of the *oldtimers* (just don't post much) so you probably know the ropes already.

Can you afford to take short term disability?  I know that's not necessarily a good answer, but it may be better than losing your job.  Maybe that way, you would have a chance to get your headaches under control.  Do you have any vacation time?

Bad thing about it is, Wal Mart is getting worse and worse every day (I'm a merchandiser and have 10 of them and the changes aren't good for anybody, employee or consumer).

Good luck.

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

Have you tried O2 at very high flow, like 40 lpm?

Have you tried a long half life Triptan like Amerge or (2) Frova's?

Are you using normal release or SR Verapamil?

Have you asked your Doc about increasing the dosage.

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.

Info needed:

Dosage amounts?

# Days in cycle?

Your Pred taper should have been like 60mg to 50mg to 40mg etc.. daily and you shouldn't have gotten hit until the end of the 20mg or 10mg day as you were coming off of it.

As for Topamax and the kidney stones, you can use Uriflow. It's not the world's greatest solution nor fail safe, but lots of people find it works for them by creating the right "kidney climate" to keep the stones from forming or passing them painlessly enough.

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 8-)
Pfunk

I wonder if you should try gulping an energy drink right before your O2? Some say it really helps the O2 work better and longer.

If I was in your situation, I'm sure I'd be pursuing the ClusterBusters route. Have you seen those very encouraging preliminary findings just released by Dr. halpern at Haravard Medical? Brings some mainstream legitimacy to it, not to mention the new Newsweek aricle on the subject.

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.

Can you apply for intermittent FMLA?

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. :)

I contacted a human resources manager, had her send me the paperwork for intermittent FMLA, which then has to be completed by your doc and sent back to human resources. They then make a determination as to whether or not you're eligible, but I don't think it's a real high hurdle to clear.

Edited to add: Just to be clear, your company does not have to ensure your particular job will be there when you return. Only that a comparable job is offered. It depends on how long you're out, and I'm not sure of those parameters. I have yet to invoke the FMLA as I've been using vacation and personal time.

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. 

Hey Pfunk.  Some great advise has been given so far.  There is one other thing you should look into.

Get your Testerone level checked.  If it's low, Testerone therapy may help.  It has certainly help some other folks around here.

I got mine tested and was shocked to find out that it was very low.  I've been using Testerone Gel therapy for two months and I'm skating PF through what should be a cycle right now.

Good luck with the beast and the employer.

-Dennis-

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

The only reason I suggested the topamax is because you know it worked before - even if it means upping the dosage and waiting it out to the 4 week mark that it takes for it reach full blood plasma concentration levels in some patients.

If you can get the verapamil to work, more power to you.

I'm just not understanding why you're not responsive to a prednisone taper - that's perplexing, and troubling. Also, the imitrex should be aborting these within 15 minutes after the shot allowing you to work with just some "breaks" most any reasonable employer would allow - akin to insulin shot.

Verapamil or Topamax dosage not being or at the right levels in the blood yet i could understand, but imitrex and O2 not aborting is worrying me.

Have you been taking any other painkillers or narcotics for the pain? I suspect withdrawl headaches of some sort instead of actual clusters.

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

    I wish I had more help to give than sympathy but it's just not the case.  I quit /got fired from my job almost three years ago.  I just cannot promise anyone I can be there from 8 to 4:30 everyday.  Luckily I can take my trade and find my own work on my own schedule to stay afloat(and believe me that's about all I do).  I don't know what I would do if I had a family to support though.  I will tell you that my friends and family like having an out of work carpenter around, as they are currently my biggest customer base. 
     Else wise I live on o2 and red bull.  Together they pack a hell of a ko punch.  After to many in a day it leaves me feeling sick but functionable.  I have order taurine supplements and am waiting their arrival.  As soon as I have more info on how it worked for me you will all be the first to know.
    So much easier said than done but keep your head.
               Buzz

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.

Doc filled out all the paperwork for LOA today and I turned it in at work. Only got hit 3 times rather than 6-7. Going back to appt. with doc Thurs or Fri to ask him about possibly getting started on the lithium. The store manager still has to approve LOA before I can start to use any vacation or sick leave.

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

Doc filled out all the paperwork for LOA today and I turned it in at work. Only got hit 3 times rather than 6-7.

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

Brew wrote on Mar 30^th, 2010 at 7:36am:

Pfunk wrote on Mar 30th, 2010 at 2:03am: Doc filled out all the paperwork for LOA today and I turned it in at work. Only got hit 3 times rather than 6-7. Well, there you go. Having your doctor fill out paperwork reduces the frequency of cluster headaches. ;D

Don't laugh.  For many years I swear my Neuro's office was a trigger and cure for my headaches.  I could be in remission for over a year and show up for my yearly check up and that afternoon I would get hit.  On the other side, I could get hit daily for weeks and the day I set foot in my docs office, they just stop. Has happened so many times it is a little creepy.

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

Quote:

I noticed that most of you who are taking lithium with success are taking the verapamil as well?

I have had success with both separately, but in my darkest days they only worked together. It's called the "chronic cocktail" for a reason, and it was always the 1-2 punch for me.

Prepare to be tired all the time, however. And realize that it takes a good 10 days to 2 weeks for both to build up to therapeutic levels in the blood.

I have always taken lithium by itself as a prevent and it has worked great. Hoping it proves as effective for you. You'll know in about 10-14 days. Crossing my fingers for you.

Joe

Back to work today after being out for almost 3 weeks. As I am running out of paid time to use. I am however getting a little bit more relief now thanks to my WONDERFUL CH.COM FAMILY. I am taking 900mg of lithium and 100mg of topamax daily and have not used a trex shot in over a week and a half(longest ever). Still take 50mg trex pill from time to time but mostly using O2 to abort. Anyway, kind of nervous about going back to work because, the last time I was there I got hit three times, the last one being right in my managers office so it could really freak him out good; but it did make him understand a little bit better. Anyhow, wish me luck. I'll be back in the morning to tell ya how it went.
Couldn't have done it without alll of you! I LOVE YOU GUYS!!!!

Pfunk 8-)

Pfunk, sorry I didn't see this sooner ... I guess I was experiencing techincal headache difficulties.  :-)  I'm glad you got on the FMLA.  I'm off on that for the time being as well, and while they might be talking about me at work ... I really don't care.  While I'm off, I'm concentrating on getting back on track, and that's all I'm thinking about.  Hang in there.  I did see someone suggest a higher O2 flow.  I can attest that 15 lpm was doing next to nothing for me.  It took 1/2 hour to abort only to get another headache withing the hour.  I've since switched to the 25 LPM and am having amazing results.  I also stay on the o2 after the headache is gone for about 15 minutes on a lower flow rate.  This prevents the subsequent headaches from coming back.  Good luck to you, and enjoy the vacation (well, not really a vacation ... but a much needed rest).  :-) 

pfunk,

Ask your doctor for samples of Zyprexa.  While they make me tired and groggy, they work great for me and I sleep well too.  I use it as my last resort when Maxalt and Oxygen dont work a night. 

I wish you pain free days and a successful transition back to work soon.

Once again, thanks to everyone for the well wishes. As for the first day back to work. It went off without a hitch(or HIT) you might say. The night was pretty uneventful. Yesterday was the first HA free day I've had in 2 months. I'm having some stomach issues but as I understand, it will probably just go away as my stomach adjusts to the higher dosage of lithium. However, it is just one day. But I'll take even one PF day any time.
I have to say that it awesome to have such an incredible support group/FAMILY to count on in times like this. You guys truly are incredible!

Much Luv and PF Wishes,
Pfunk 8-)

Some jobs are better about this than others.  Id suggest having a 1 on 1 with your direct supervisor about this and then maybe with someone in HR to see what thaty suggest.  I did this with my boss and it got me a lot of wiggle room... when it got to be too much she then suggested I go the FMLA route.  FMLA can be handy especially if the employer doesn't want to work with you.  You don't have to use FMLA in blocks.  My doctor set mine up to be intermittent for 1/4 hr to 1 day at a time for up to 20 occurrances per month.  This means I could take off as little as 1/4 hr or as much as an entire month, up to 3 months at a time and be fully protected, though unpaid, but have to notify my employer every day.  If you have it set up for longer blocks of time you wouldnt need to notify as much.  I find this very handy given the nature of the CH beast.  Basicially you need to initiate the FMLA process with your HR department.  They'll give you a form to have your doctor fill out.  The doctor needs to complete this.  Your HR deparment will then either accept it, or if they dont like that you're doing it, look for something wrong and fight it, but stay the course and you'll be fine.  Get them everything they need, and on time, and it'll cover you.  Then be sure to renew it before it expires by having your doctor sign off again.  It'll become procedure after a while.  Your job isn't protected, but a job is protected.  Usually this means your job is protected... they can put you doing something similar if it was essential to have someone else complete your tasks.  There is also federal and state FMLA.  In WI they run concurrently, but the State resets on January 1st, while the Federal resets on a rotating calendar.  That means if you first use your Federal FMLA on July 1 and exhaust it by November 1 (your State will be gone too because it's concurrent), the State will reset and become available on Jan 1 while the Federal wont come back around until November 1 as you used it.  In WI I think the State is 1 or 2 wks vs the 3 months of Federal, so it is a way of adding a couple more weeks in a way.  Check your State's laws for details.

2 days at work now witout a hit. I seem to be gettin a bit of something right about now but as I am able to type this message it is not that horrible and is easing off on its own.
Fram, as, for the zyprexa, is it used as preventative or abort? My doc is pretty open to any suggestion I give so I'm gonna suggest it tomorrow. Thanks

Pfunk 8-)

Zyprexa (olanzapine) is used as an abortive.

Brew wrote on Apr 13^th, 2010 at 10:49pm:

Zyprexa (olanzapine) is used as an abortive.

Thank You! I will mention it to him today! Brew thanks a bunch man! Your posts have been overly helpful during this worst cycle I have ever had. It means alot. Love ya!

Pfunk 8-)

You betcha. ;)

So happy you've gotten this thing under control pfunk!

tonight was 3rd night back at work with no hits. Last night sleeping was pretty bad 3 or 4 hits but o2 did the job. You guys really have been an incredible help. They are even being overly accommodating at work. Maybe it was the little "lawsuit" word that was dropped when when we were having problems with my FMLA and my getting paid. I dunno ;D.

Much Luv and PF Wishes,
Pfunk

Oh, I'm so glad things are working out for you !   :)

Still gettin hit from time to time at night when sleepin. But ca  deal with 1 or 2 hits a lot better than 9 or ten. Also, not gettin hit while I'm workin is a benefit as well. My store manager has agreed to let me keep my E-tank in the back office away from everything and out of the way so if I do get hit I can go there and be alone. Pretty stoked that the daytime hits seem to have gone by the wayside. Few stragglers here and there. But, all-in-all, things seem to be lookin up a bit.

Something is workin here! Cause I had another PF day yesterday. Well, a few shadows but nothin serious. And things got pretty hectic at work last night so I was prepared for the the beast to roll right in with all the other problems that arose. But it never happened. Don't know exactly what it is because I have changed so many things but I am counting my blessings. Thanks again to ALL!!!!

Pfunk 8-)

I read the whole 2 pages and this is my 4th post today , still on to much predisone evidently. It seems things are looking up for you . Everyone was right on in there help. I was curious , you work overnights right , I've had clusters for bout 30 years now , twice I worked overnights , both times for a couple years , It seemed like that shift really screwed with me , I was having more hits and at all different times then usual, I don't know , just something to consider.  wishing you the best

hope all is well today my name is Curtice and have been pf for over 2 1/2 yrs. until last week. Lots of advice that i've read seems to be working for those who are posting, but as for me a trip to my doc to get a shot in my occipital nerve works everytime. Never had more than 2 shots in 2 weeks and no more ch. I do take some meds daily alprazaloam and robaxin but during the 25 yrs that I have had them I always thought I found a remedy only to realize that they just went away. Caffeine makes them more intense, Ice has the same result. I try to stay calm and walk around some but the best remedy, while I wait to get in to see my doc is to have my wife lightly rub a wet washrag on my back and neck almost tickling my back or just use her hand. It has to be dark, quiet and cool.  If you can get the tenseness out of your back and neck (I describe it as chills up and down my back, roll your shoulders) my pain never gets worse than a 4-5 and will be gone within 10-15 min. but it all depends how far along it is when you start. The hardest thing is to stay Calm and control your breathing. Before I was married it was tough, 6-8 a day sometimes lasting up to 2-3 hrs non-stop. No one to help.
But now I think stress is a major trigger, alcohol is also a trigger and the biggest trigger of all for me is cigarette smoke and certain perfumes or colognes. I smoked for 15 yrs but I quit in '97 and the frequency and severity have decreased dramatically. I'm only having 2-3 per day@ 5-5:30P.M. and 2 am and 5am (just like an alarm clock) but they only last 20-30 mins. max. with the help of my wife and staying calm.
I usually don't have any hits as long as I am working or moving around but when I try to relax, sleep or talk about my ch's is when I'm most suseptible to another round.
Take care hopefully your cycle is over but you might check into trigger point inj. I can give you info of my doc. which is a vascular surgeon that gives me the shots if you need it but he is in Oklahoma. He told me not may docs do this procedure because they do not understand ch's and he is the only one I know that gives them. Sorry so long but so much to say maybe something will help. I DO KNOW WHAT IT'S LIKE, UNBEARABLE!!!  My quote after wards is "I feel alot more like I do now than I did" :)
Since I am new to this site as of y'day there is a post on the guest book site with my e-mail if you need any info. at all. 

In reply to Horsegirl. I actually am on a 4pm-1am shift though I have only been on that shift now since about a week before this most recent cycle started. I'm thinkin that the drastic change in my sleep may be what ultimately triggered this. I had been HA free for 2years and had worked all 3 shifts at this company but this one doesn't seem to be agreein with me.
I have been HA free for 2 days now. not even a nighttime hit! :D

Pfunk