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        New Message Board Archives >> Jul-Sep 2003 >> Work and CH..and more?'s
        
(Message started by: Skoenig on Aug 13^th, 2003, 12:42pm)

Title: Work and CH..and more?'s
Post by Skoenig on Aug 13^th, 2003, 12:42pm

I am in my first 6 weeks of CH's ever and just wondering how one does thier job effectively with this? I am in outside sales and it is very difficult to be in my car all day and in and out of offices feeling this way...8 h/a's on Monday...more Tuesday...one day with 11, etc...I am about at wits end and afraid of losing my job.

More questons...:
1) Is there some sign so you know you are going into a remission? Is there a magical (ha ha!) number of PF days and you could possibly assume remmission is on it's way?

2) Is it normal to have 8 one day and 3 the next, none one day, 11 the next, etc.? Also, differing degrees of ha's in same day?

3) I have been on many medications in 6 weeks so far - Neurontin, Amerge, Maxalt, Inderal (beta blocker), and Dr. just changed me to Verapamil SR 180mg once daily. I am taking nothing now to stop the pain - UGHHHH, as nurse at office says not right now! I guess she has never had one of these, obviously. My question is, for Verapamil users, is 180 near enough, is it different for everyone, and how long does it take to begin working if it does work?

4) Last one, I promise! Does everyone while having a CH get pain in back of head and neck as well? I read where neck pain was for chronic sufferers and just wondering.....?

I appreciate everyone's responses in my first message as it is so nice to know there are such caring, generous people in this world! I am in Texas - anyone close?

Hoping you are all doing well and PF!

Susan

Title: Re: Work and CH..and more?'s
Post by Miklos on Aug 13^th, 2003, 1:18pm

You don't say where you are in Texas. I live in Plano and work in Addison. If you want, send me a message, and I will give you my toll free number here at work. Sometimes talking helps. I did 33 years with IBM, most of it in outside sales support, lots of it while in cycle.

You will get a ton of advice and empathy from the board starting with recommendations that you review the tips on left side of the board.

Wish you luck, and give me a call.

Title: Re: Work and CH..and more?'s
Post by Live4Fun on Aug 13^th, 2003, 1:24pm

Welcome Susan! Don't worry, we like questions around here :)

Here are some anwers that might help ya...

1). Usual advice is 2-3 weeks PF means you are out of cycle if you are episodic.

2.) Nothing is "Normal" with these bastards. Different amounts of headaches each day is typical, at least for me.

3.) Verap - start with 180 and if it does not seem to work, ask for an increase. Different amounts help different people. Some people on here have taken/are taking up to 960 mg a day.

4.) I don't normally get neck or back of the head pain, but I am episodic. I do get forhead pain when I bang my head too much ;)

Hang in there on the job. The best thing you can do is just educate your employers as to what you have and do your best. You cannot get fired for this disability if you are upfront and honest with them.

PFDANs Susan! I hope the beast leaves you alone soon!

Bryan

Title: Re: Work and CH..and more?'s
Post by Skoenig on Aug 13^th, 2003, 1:25pm

Thanks, Miklos for the reply. I am in Dallas - in Plano and all over Dallas with my work!

I have read all of the links to the left and they have been extrememly helpful. I don't know how I would have made it without this website daily since I found it! Lots of nice folks here eager to help. I am just asking a lot of questions because this is my first cycle ever and do not know exactly what to expect!

Susan

Title: Re: Work and CH..and more?'s
Post by vig on Aug 13^th, 2003, 1:27pm

no, yes, no idea, and lastly... no.

1. Most people go a week or two before they hit the keg.
2. the roller coaster ride is quite unpredictable, but 11 sounds awful.
3. No verapamil here.
4. I'm a pain in the neck, but I don't get them.

I do have to be very careful at work. You have to know who you can trust, otherwise you keep it to yourself and suffer in silence.

Title: Re: Work and CH..and more?'s
Post by Miklos on Aug 13^th, 2003, 1:30pm

OK, Susan. The local office number is 469-916-0278. Holler when you get a break. Or I'm in the book as M.C. Kenney

Title: Re: Work and CH..and more?'s
Post by maggie_may on Aug 13^th, 2003, 2:28pm

Susan,

Nothing with these headaches is normal. It's typically said that most people with CH get attacks at night while sleeping. I, for one, have only been awakened three times that I can remember from the beast. I get them like clockwork between 1pm and 3 pm and again around 9pm when I'm in cycle.

During my first hit of the day, I'm at work. I found it best to talk with my boss - she's VERY understanding. I sat and talked with her and told her exactly what to expect when I feel one coming on and that if I get up and walk away, that I'll be fine in a few minutes after I get my Imitrex, just a little tired. There is an info sheet somewhere on the 'net that describes in detail what we go through for bosses and other people that we're involved with, but I can't find the link right now (I'm sure someone will help with this one ;) )

As for your questions:

1. typically, people who are episodic wait about 3 weeks before being in PF. If you're chronic, that's not the case.

2. like I said above... CH is not "normal" in any way. You can get hit several times one day and none the next, only to be hit again on the third day.

3. Talk to your doc - since nurses don't help as often as they should sometimes (I just had a HORRIBLE experience with a nurse over a seperate medical condition). If they won't give you Imitrex or something similar - demand O2, at least that's the least invasive abortive that works most of the time. About Verap, I take 240mg/day, but there are others that take upwards of 960mg daily. Talk to your doc about this one too.

4. Regarding neck pain, I can't really help on this one since I have a curvature of my spine and my neck always hurts.

I hope I was somewhat helpful in this long-winded answer.

wishing you pfdans
maggie

Title: Re: Work and CH..and more?'s
Post by 9erfan on Aug 13^th, 2003, 2:48pm

Hi Susan,

Welcome to the board & sorry you had to join us. :(

I use to be in Inside Sales, but never Outside. I can't imagine what it would be like to not have somewhere during the day (a dark room) to go hide when I was crying my eyes out. Sales is a really difficult job with these damn headaches. It's not like you can just hang out in your cube for awhile until it passes. I'm sure it's difficult to try to throw your pitch out to prospects when you feel like your brain is going to explode! Hang in there! They will stop eventually.

Unfortunately, there really isn't anything "normal" about these headaches and how often a person may get them. Everyone on this board is different. Eleven sounds like hell, but probably not out of the question.

I can't answer your question about verap (not currently on it) or about remission (because I'm chronic). But I can tell you that I suffer from excruciating neck pain with my clusters. Sometimes it goes all the way across my shoulder (that only started a few years ago for me).

Call the Dr & get some Immitrex & O2 (portable for the car).

Good luck and stay on the board. Keep us posted. You'll learn a lot here.

Virginia

Title: Re: Work and CH..and more?'s
Post by Skoenig on Aug 13^th, 2003, 5:23pm

I just want to say thanks to everyone who has replied. I have found much help, support and understanding here that I could never have dreamed of.

I am in the middle of a cycle - my first one - and have not known what the hell to think of all this - without this website, am not sure what I would have done. It's a lonely thing without people who know what it's like to have CH's....

Once again, thanks to everyone and if I can help anyone please let me know - not that I know much being a newbie, but I can try and I have a good ear!!!

Susan

Title: Re: Work and CH..and more?'s
Post by River_Rat on Aug 13^th, 2003, 6:01pm

Welcome Susan,

There's not much more I can say that the others haven't already said.

For me anyway, my CH's almost always get to a point where I think I'm going to lose it just before they start fading away, I start to get less per day yet still very painful, then they start to get to a point where I can actually stand it like a 5 (kip scale) and pretty soon there just completly gone.

I sometimes feel pain in my neck, but it's minor.

I'm a Realtor, (outside sale) I have no good answer, I will sometimes call and say something came up I'm running an hour late, I've lost clients before but at least I didn't have to worry about a boss.

Good Luck,

LEE

Title: Re: Work and CH..and more?'s
Post by Charlie on Aug 13^th, 2003, 6:12pm

Sad to say, nothing there sounds off the wall. Most of us have similar stuff with variants. For me, I had no back of the head pain. It's been reported here several times though.

Stick around, you'll find all kinds of things to help with this horror.

Charlie

Title: Re: Work and CH..and more?'s
Post by ClusterChuck on Aug 13^th, 2003, 11:23pm

Skoenig, I only wish this site was here when I started (over 20 years ago). I just found this site last night. It has been a GREAT help to me, even thought I have had them for sooooooooo long!

Something I did today, and I have gotten great responce from it, is that I copied and sent the Cluster Traits (on left side of screen) and Kip's scale to my family and friends so that they can understand some of what we go thru. I have never been able to get them to fully understand what I (we) go thru.

I think the comment that I hate the most is "Oh yeah, I get (or I know someone who gets) bad headaches, too." If these people only knew what we go thru!

It might help to give your boss a copy of those Cluster Traits. It might help him (or her) to understand. I know when I get them, there is no way I can do my work. So far, the bosses that I have had were very understanding about them. The only one that I have had trouble with is the one I work for now. He is a real a$$hole! The biggest problem is that I have to look at his face every morning in the mirror as I shave!!! (Yes, I am now self-employed!) HA ha !!

Anyhow, I hope the above helps you.

Chuck

Title: Re: Work and CH..and more?'s
Post by nasus on Aug 15^th, 2003, 9:45am

Hi Susan

I am a Susan as well, my handle is my name spelled backwards.

I just recently started a job and my cycle has begun. I work outside (lawn care & landscaping) and the heat makes them worse. I am now in the position where I need to let him know of my clusters. I always dread having to explain to someone who more than likely will not understand.

I have sparatic attacks for a month or so before they settle into a pattern of at least one a day. Mine come usually while sleeping. I try not to pay attention to the ones that I do consider as warning signs because I don't want to believe that a cycle is coming. Once I start getting hit 3-4 times a day (like now) I know I have to give into the fact that I will be in Hell for awhile.

It is normal for me to get no attacks one day than 5 or more the next. I wish I knew why.

It has been awhile since I have taken meds, so can't really answer on that question. I used to take verapamil as a preventative then imitrex injections (1/3 shot) for the ones that sneak through. I believe the verap did help to reduce the number of attacks i got.

My attacks stem mostly from around my ear and eye. I often feel a tightness in the back of my neck but I think that may be from me tensing up when getting hit.

welcome to the best site for people with the worst pain in the world..you are not alone!
sue :)

Title: Re: Work and CH..and more?'s
Post by Giovanni on Aug 15^th, 2003, 10:02am

It's hard to believe your doc has not given you anything for an abortive. He/she must not understand these things too well. I take imitrex injections which aborts the headache within 5 minutes. Next cycle I will be getting O2 also. Good Luck......... ???

Title: Re: Work and CH..and more?'s
Post by Skoenig on Aug 15^th, 2003, 10:27am

Actually it is not the Dr. who denied Imitrex injections this week - it was his nurse who was trying to get off the phone with me and did not want to be bothered! I think she was just making her late afternoon return phone calls and wanted to go home rather than listen. Typical, isn't it. It seems I have read a lot on this message board concerning rude treatment from the Dr. or his office staff! Not a real good way to handle folks with these ha's, huh? I wanted to ask if she had ever had one and then say, "Well, okay, then you need to listen because you have no idea, Miss Unsympathetic!"

I think I will call her back today - I cannot go through another day with 8 ha's as I did on Monday without something! However, I am scared to say....shhhhhhh...I will speak quietly...... I am just excited that I have not had a ha in over 24 hours......In 6 weeks this is only day 4 or so with no ha!! I will take what little relief I can get!

Thanks for listening!

Susan

Title: Re: Work and CH..and more?'s
Post by Patrick_A on Aug 15^th, 2003, 3:48pm

Hey Susan, Sorry to hear about you suffering. It absolutely sucks and I know!
The one thing i wanted to add that i didnt see from the others is....At the OUCH.com site it has a list of Doctors who are bonafide Cluster Headache Doctors. Ya might be able to find one in your area. I found one this way and it has made a world of difference to me. They tend to be more sympathetic to your needs!

Good Luck, Patrick

Title: Re: Work and CH..and more?'s
Post by ksmiggy on Aug 15^th, 2003, 6:46pm

haven't noticed any signs indicating remission, anytime anwhere anyhow i'm afraid 8 one day , none then 4 then 8 again, seems normal to me, medication in a sec, the paain in the neck, yes have had that on bad attacks only though.
As for the medication, i tried lots of preventatives, verapamil etc, had really bad attacks all the time, rocking crying etc, finally had enough, no more mr guinnea pig, setled for pain killers and injection, still get attacks, but no where near as strong. as for work, been temping for about 8 years, only way in the end

Title: painorific
Post by rumplestiltskin on Aug 16^th, 2003, 5:14am

...all yer questions were answered.

Consume this site and OUCH

Georgia and I...the married Cluster couple around here, live in Conroe Texas

My cell 936-537-7311
G's cell 936-537-0452

wage peace
den

Title: Re: Work and CH..and more?'s
Post by Prense on Aug 16^th, 2003, 9:11am

I get neck pain (sometimes) at the point where my head meets my neck at roughly a KIP 8. The neck pain is VERY painful, but it is also VERY tolerable compared to the eye pain. It's a good thing that your doc moved you from inderal to verap. While inderal works for meegrainers, it doesn't for CH. One thing to consider before getting way up there on verap though is that it does take some time to build up in your system before it becomes effective. Predisone normally takes care of the time while the verap is building. Everyone is different though. I am chronic, what is remission? :P Hang in there Susan!!

Chris