Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        Cluster Headache Help and Support >> Getting to Know Ya >> A bit afraid to go anwhere...how do you deal?
        
(Message started by: fiddlehead on Jan 27^th, 2008, 11:19am)

Title: A bit afraid to go anwhere...how do you deal?
Post by fiddlehead on Jan 27^th, 2008, 11:19am

Hi All...
As I've been dealing with these vile CH's it occurred to me that I have gone almost NOWHERE ('cept the hospital) since this started. My children have 'earned' their $$ (helping around the house, etc) and they want to go shopping. I am very uneasy about getting out with them....if I get a headache, I cannot imagine getting stuck in a store or being able to check out in time to get to the van. I've had headaches come unexpectedly, last time I WAS in the van w/my 3 yr. old. Made it home just in time, but I was close enough to do that.

I'm not a phobia kind of person and don't want to become one. Today I have my mom (visiting for a week) but after that I will be back to 'super mom' duties on my own again.

Helen, (LeLimey) what kinds of things should I do? Anybody have any strategies to deal with this?

Thanks for any thoughts you might have on this.

Helen

Title: Re: A bit afraid to go anwhere...how do you deal?
Post by LeLimey on Jan 27^th, 2008, 1:48pm

Hi again Helen
I was just checking back through your other thread to see what meds you're using but couldn't see - do you have O2? I never leave home without a portable cylinder of that in the car. I also always, ALWAYS have red bulll or cheaper generic energy drinks in the car as if chugged at first twinge - and I mean drunk as fast as you possibly can, they really help. Caffenie is a vaso constrictor so it can really eliminate the pain as can strong coffee - although thats not so easy to carry about!

Carrying trex if you se it is good too as are those chiemical icepacks. I keep an eye open for them in the dollar store type places and stock up when I see them.

If your car has AC run it on the coldest setting and the highest vent and stick your face right next to it while waiting for other stuff to kick in, it helps (obviously pull over first!)

I have some "in the event of an attack" cards which explain what is happening for strangers. If you like I can send some in the post. Send me your snail mail addy, or a work addres or something and I'll get them to you. I can understand giving names and addresses to people over the internet is a bit bizarre but you can check me out on the OUCH US website. I'm on the Board of Directors there.

You might also want to look at the family services link there. Linda Howell who runs the family services team is lovely and a really good friend, She has loads of advice and info and is full of valuable resources for you.

I hope that helps! We always will do our best I promise

Helen (the meaner nastier older one!!!)

Title: Re: A bit afraid to go anwhere...how do you deal?
Post by purpleydog on Jan 27^th, 2008, 2:17pm

As Helen said, keep a small tank of O2 in the car (van), and I never go anywhere without my imitrex injections. I keep a few loaded, and can give myself a shot in public, so no one sees me. It only takes a few seconds, if you are loaded and ready to go with them. Or get to a quiet place in the store, or the restroom, if you feel more at ease that way.

If you can, maybe even keep a red bull in your purse, if it will fit. That way, you have it when you need it.

If your hits come at the same times, try to get out around those times, and then be prepared if one comes on. If you have to leave a store, don't worry about checking out. You can always go back and get what you went for. I have even had to use trex while in the checkout line. No one asked, and if they would have, I would have told them it was none of their business. Having CH doesn't mean you have to explain it to everyone. But, if you get to the point where you can't talk, the cards that Helen has do come in handy.

Title: Re: A bit afraid to go anwhere...how do you deal?
Post by DennisM1045 on Jan 27^th, 2008, 4:19pm

Like these two have already said, go prepared.

I keep a backpack and an e-tank in the car at all times. The backpack contains my regulator and mask + an energy drink + an imitrex autoinjector. I've had to make frequent use of my tool kit.

Just having it with me gives me the confidence I need to get on with life and not worry about it. You will think about it but you won't worry about it.

Getting hit in public sucks but don't let CH stop you from living your life.

I hope it never happens to ya. PFDAN!

-Dennis-

Title: Re: A bit afraid to go anwhere...how do you deal?
Post by fiddlehead on Jan 27^th, 2008, 9:07pm

Hi All,
Thanks for the suggestions. My current coping strategy is the following: Red Bull, Zomig Nasal, and Propanolol (preventive, uh...not really working). My neuro would not 'prescribe' oxygen for me b/c she said my insurance wouldn't pay...I tried that on Friday. Of course if she didn't tell them I had CH, then that would by why they won't cover it. Will see what I can do tomorrow. This is the doc who will not believe that I have CH's, so I may have to go the welder route until I find a good doc. I tried to take some other meds but I had (what I think is) a rebound, which was like the vile devil eating my brain for 12 hours. No more medicines....I can tough an hour out way better than 12 hours. They seem to be tapering out some, less intense, shadows not as bad. Lots of pressure in my head, tho.

Thanks for all of the good advice, everybody. I'm taking it all. Wish I could repay the kindness. [smiley=bow.gif]

Helen

PS...what is trex? Imitrex?

Title: Re: A bit afraid to go anwhere...how do you deal?
Post by Ray on Jan 28^th, 2008, 8:00am

"trex" is short for Imitrex, yes.

I view life with the Beast as a choice. You choose to continue to live life, otherwise the Beast has won. Dennis has the right idea, you gather your tools, to be prepared and then you continue as if there was no Beast.

Any time that you don't do something for fear of the Beast, you've given up some of your "soul" to him. Never give up the fight. The Beast is never to win the day.

Good luck,

Ray

Title: Re: A bit afraid to go anwhere...how do you deal?
Post by brewcrew on Jan 28^th, 2008, 8:12am

on 01/27/08 at 21:07:48, fiddlehead wrote:

My neuro would not 'prescribe' oxygen for me b/c she said my insurance wouldn't pay...I tried that on Friday. Of course if she didn't tell them I had CH, then that would by why they won't cover it. Will see what I can do tomorrow. This is the doc who will not believe that I have CH's, so I may have to go the welder route until I find a good doc.

No more medicines....

First and foremost, I'd have fired that doc yesterday. Next thing you know, she'll be trying to apply leeches to your forehead.

Please find a competent neuro who specializes in headache treatment. If you truly believe that you are better off with no meds, the beast will win. You need to at least try some of the preventative regimens that are proven to work in some people.

And as to welder's O2, you're not going to be able to take that with you when you go out. Welder's tanks are about 5 feet tall and weigh twice as much as your 3-year-old. They're a great solution for home, but not very portable.

Title: Re: A bit afraid to go anwhere...how do you deal?
Post by fiddlehead on Jan 28^th, 2008, 8:24am

Aahhh....I see what you mean about the welders o2. Well, now all my kids are in school and I can do something about this. I am going to call around right now and see what I can do. I looked on the list of recommended docs and the only doc in South Carolina is a bit far from me....I am going to call around and see if there's somebody closer. If not, then I'm there asap. I thought my cycle was ending the other day, but no...beast came twice last nite.

Will let you know what happens, thx again for the suggestions.

Helen

Title: Re: A bit afraid to go anwhere...how do you deal?
Post by Stinger on Jan 28^th, 2008, 11:50am

The red Bull has helped me the last couple of times at the store this last week. And the Zomig I took during my last cycle was great. I know, it's probably worse when you have kids along. Good luck. It is so important for me to catch it as soon as possible, but if you are like me, you tend to want to wait a few minutes to make sure you are getting a headache. That is a mistake I often make, I guess so I won't waste meds.

Title: Re: A bit afraid to go anwhere...how do you deal?
Post by RichardN on Jan 28^th, 2008, 4:03pm

Helen

Totally understand the paranoia of being out with the kids and getting hit. The whole year before I came here, found a name-for-the-pain and started to get some control over him, I was afraid to take my grandson anywhere . . . to the woods, movies . . . anywhere . . . for fear of having him watch me die. CH pain is so severe you're positive it's life threatening and must be tumor, aneurism (sp?), pending stroke. As you get more control over the beast, that paranoia will lessen.

Re the 02. They do make smaller welders 02 tanks, and after the initial expense, it's considerably cheaper to get the tanks refilled/exchanged than medical 02.

If your idiot doctor's only reservation about 02 is "insurance won't cover it" . . . call several med suppliers in your area and ask what their cash price for "E" tanks is, and whether they furnish the regulators (remember, you need a 15 lpm regulator . . . they might have to order one), or whether you have to buy it. If you have to buy it, go to ebay and you can find one for $30-50.

I pay $10 per "E" tank, and though initial regulator was 8 lpm, they ordered a 15 lpm reg for me . . . was never charged for either. Ordered my second regulator (so I don't have to carry back and forth to vehicle) from ebay.

I'm on Medicare, which doesn't cover 02 unless you have low blood-oxygen levels (my levels are better than the twenty-something nurse who last checked it). However, they will approve if your doctor signs a "letter of medical necessity"). I have this form, and my current GP has offered to sign same, but about a month ago my wife found a link (meant to post on this forum . . . and will if can find again), which indicated that if you are approved for 02 on Medicare, they pay the supplier over $3,000 per year for continuous service . . . . that's a buttload of 02. . . . and I don't really feel I can (with any conscience) abuse the system anymore than it already is.

Make sure you call more than one supplier . . . prices can vary wildly . . . and if you find one that has a reasonable price, call the idiot's office back, tell her you're willing to pay cash . . . you just need the script.

Oh . . . and I wasn't kidding when I suggested triggering an attack at the doc's office . . . sounds like she could use a "learning" experience.

Be Safe, PFDANs

Richard

Title: Re: A bit afraid to go anwhere...how do you deal?
Post by E-Double on Jan 28^th, 2008, 6:37pm

Coping or treatment question???

As far as treatment goes you got some really good advice.

As far as coping well here it goes.....swift kick in the tushie my dear.

The fact is this it will come regardless if you are home or out.
If you are out utilize the same tools that you would if you were home.
Then go about your day.
You are falling or have fallen into the trap and stopped living.
I was there once too so don't think that I'm being an arse though I do feel that sometimes we really do just need a kick in ours to snap out of it.

Hugs to you and start living again.

E

Title: Re: A bit afraid to go anwhere...how do you deal?
Post by Linda_Howell on Jan 28^th, 2008, 6:50pm

Helen,

After you fire that idiot with a medical degree, find your elf a Dr. who knows what he's talking about and then do this:

Get a script from him for 02. High-flow regulator and a non-rebreather mask.

Then call Lincare. You live in Spartanburg and here is their information.

Lincare
2956 E. Main St.
Spartanburg, SC 29307 (864) 591-2600

Go there and ask to speak with the manager, make an appointment if you have to. DO NOT try to talk to any nitwit who simply answers phones. Tell them you do not have Ins. or you want to leave them out of it entirely and ask them to cut you a "for cash" deal. Cry, beg or bat your eyes...do whatever you have to do. Give them a very brief explanation of cluster headaches and how they alter your life and that you need 02 as a safe alternative to meds.

I did this years ago and they have honored this "deal" since then. I have also given this advice to many here and it worked for them also. I pay $10.00 per E-tank. To help with the cost of the regulator and mask, let me know when you get the 02 tanks and I will send you a regulator and mask so you won't even have to buy that.

None of this is rocket science, but we do have to get creative as well as help each out here.

Linda

Title: Re: A bit afraid to go anwhere...how do you deal?
Post by fiddlehead on Jan 28^th, 2008, 7:34pm

Thank you so much, everybody. I'm blown away, really.

:o See that smiley? That's my eye right now, I'll update tomorrow when I get some o2.

I cannot believe that someone would look up all of the info in my town for me, I'm blown away by your kindness. Thanks for the tushie-kicking too.

Helen2

Title: Re: A bit afraid to go anwhere...how do you deal?
Post by Bob_Johnson on Jan 29^th, 2008, 10:19am

You asked about meds:

http://www.plainboard.com/ch/chtherapy.pdf

Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
================

If you feel the need to find a different doctor:

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. http://www.achenet.org On-line screen to find a physician.

5. http://www.headaches.org/consumer/index.html Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

Title: Re: A bit afraid to go anwhere...how do you deal?
Post by brewcrew on Jan 29^th, 2008, 11:47am

on 01/28/08 at 19:34:32, fiddlehead wrote:

I cannot believe that someone would look up all of the info in my town for me, I'm blown away by your kindness.

That's not just someone. That's Linda. No ordinary Gentile. And today's her birthday.

(Happy Birthday, Linda. Sorry, no custard this year - too deep into the bathroom remodel. But maybe when it gets a little warmer as a special treat?)

Quote:

Thanks for the tushie-kicking too.

And that's no ordinary Jew. That's Eric. He knows whereof he speaks.

Keep your chin up and your rig between the ditches. We'll wait to hear back from you.