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Some questions for the more experienced (Read 2183 times)

Kit

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Some questions for the more experienced
Nov 14^th, 2008 at 5:51pm

Hello, all,
Kit here, me and my hubby Chris (CH sufferer) have been wondering a few (not necessarily important) things.
First, let me say that although Chris has thankfully finished his cycle (just over 1 PF month now

), I have vowed not to forget about this site, as you are all so amazing, and I don't want to ignore you while Chris is PF.
Question #1 - When not in a cycle, does anyone find they no longer suffer from "regular" headaches? Specifically, Chris is immune to hangover headaches (which is all he ever had before CH). Is it possible the regular headaches still exist but since they are not CH related they just don't affect you anymore?
Question #2 - Are there any celebrities that suffer from CH? Chris's theory is that if there were and someone came forward there would be more awareness and progress when it came to CH...
Question #3 - Although we are trying hard not to think about when the next cycle may hit, it is inevitable, so we have his meds handy, but should I also stock up on things we haven't tried yet? Such as O2, herbal meds,etc? Or is that going overboard? I don't want to overdo it by bombarding Chris with all that I have read here, but I also want to be so prepared for the battle!
Anyway, just wondering what everyone's opinions are...
Take care, PFDAN to all Roll Eyes

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Guiseppi

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Re: Some questions for the more experienced
Reply #1 - Nov 14^th, 2008 at 6:30pm

Keep asking away, knowledge is your best weapon.

1: I don't get normal headaches, ever! I don't know if it's a pain tolerance issue or if the CH mechanism affects us in some other way.

2: I think there are a few celeb's, others on the board have mentioned some, a football player, none that have come out as spokespeople. A damned shame too cuz you're right, nothing like Oprah saying it's important, then the money for research pours in!

3: Off cycle I keep a months worth of meds, including my oxygen and imitrex on hand. If you can score oxygen, and can afford to keep it on hand, it's certainly worth a shot next cycle. We're seeing about a 70% success rate on the board so percentage wise it'd be silly not to at least try it.

Thanks for being a supporter. My poor, long suffering wife has put up with 28 years of these things and is all that's kept me sane many times. She's also the one that found the board for me. We never say thanks to you guys enough and usually end up being turds to you a time or two while on cycle. We love you guys. Smiley

Guiseppi

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barry_sword

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Re: Some questions for the more experienced
Reply #2 - Nov 14^th, 2008 at 6:44pm

Hi Kit, great to hear Chris is enjoying some PF time right now, may his remission last forever. Thanks for being such a great supporter for him.

Like Guiseppi,said, arm yourself now and be ready to do battle when need be. Please ask your doc for o2, print off the info to your left and talk to him/her about getting it. I will help in any way I can to help Chris get the same relief I get from my o2, but he also needs a preventative, and there are quite a few options.

My o2 is covered 80% by my wife Angie's insurance at her workplace, so that is a blessing, but it is not that expensive out of pocket either.

Enjoy your down time you two and remember to be armed and at the ready if needed. Wink

Barry

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jon019

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Re: Some questions for the more experienced
Reply #3 - Nov 15^th, 2008 at 12:21am

Hi Kit,

Thanks for being a supporter...we worship those!

To answer:

#1) Rarely get "regular" headaches..and when I do I barely notice..it's all relative.

#2) The only "famous" person I ever heard of with this is Frank Capra. He wrote chillingly about it. Noone paid a damn second of attention except other clusterheads. No spokespersons...I cannot, I will not wish this affliction on anybody else...but I do dream of another "famous" person who could get the word out.

#3) Unfortunately, for many, we're in this for the long run. I could be PF for the next 50 yrs and would still have a stockpile of "necessaries".
Ya gotta be prepared. Oxygen is a wonder for me and there is nothing like the "exquisite" agony of being caught without. Only a couple of times...never again! You don't have to or even should dwell on it while pain free...just recognize it MAY end at any time...and BE PREPARED.

Best,

Jon

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ClusterChuck

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Re: Some questions for the more experienced
Reply #4 - Nov 15^th, 2008 at 12:50am

Hi Kit!!!

We LOVE hearing that someone is out of cycle and pain free!!! WOOHOO! Cris!!! I am SO happy for you! Smiley

Kit, you asked some great questions!

When I was a kid and going to school (around 9,847 years ago) I used to get tension headaches a LOT! After probably ten to fifteen years of suffering with cluster headaches, I was VERY surprised to realized that once I got cluster headaches, I have not had ONE tension headache! And I have had clusters for 29 years now.

We have been trying for many years to find a celebrity to take up our cause, whether they suffer from them or not. Of course, it would be better if they did suffer from them, but we are not picky. Many talk show hosts have been approached to hear our story, but no one seems interested. Oprah has been approached MANY many times, but never got an answer from her or her staff.

As to stocking up, YES!!! Especially if your sufferer uses Imitrex injections! Most insurance companies limit the number of refills that you can get per month, and it is VERY low to what most of us really need. So, if Chris has a prescription for Imitrex, even though he is out of cycle, keep refilling those prescriptions so that you have a HUGE supply on hand. Properly stored, they can still be effective even three years after the end of use date.

I hope you stick around, as lots that are out of cycle do. We can always use another great supporter like yourself!

Chuck

CAUTION: Do NOT smoke when using or around oxygen. Oxygen can permeate your clothing or bedding. Wait, before lighting cigarette or flame.

Keep fire extinguisher available, and charged.

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BlueMeanie

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Re: Some questions for the more experienced
Reply #5 - Nov 15^th, 2008 at 12:58am

Hi Kit,

1. When not in cycle I rarely ever get a headache. Once in awhile it would be just a normal headache like the average person would expect.

2. I remember during a playoff game back in the day when the Bulls where hot. Scotty Pippen had to sit out because of a headache and I think he mentioned during an interview that they where Clusters.

3. Definately, YES. Always stockpile abortives unless you have good insurance. I've been through several insurance programs over the years and every one only pays for 4 shots of Trex a month. (not nearly enough). My normal routine is to stockpile 12 weeks worth. This year my cycle started in May and just ended after 20 weeks. Fortunately thanks to connections Wink

I was able to last the extra 8 weeks I needed to survive.

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king of pain

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Re: Some questions for the more experienced
Reply #6 - Nov 15^th, 2008 at 2:04am

Hi Kit, I'm a 30 year episodal CH'er and I can probably count on one hand the number of "normal headaches " that I've had. I do, however get hangover headaches, but those are a joy in comparison. I have never heard of any celebs that suffer, but I do wonder how the military deals with members who do. As for the PF time, my cycles are like clockwork, from late Sept. through late April, and since being prepared is such an easy thing to do (and the fact that only O2 works for me) I always make sure I have a tank ready for next Fall. Bless you for being so supportive. Thats something I wish I had. Here's hoping your husband never has another single CH! Michael

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BarbaraD

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Re: Some questions for the more experienced
Reply #7 - Nov 15^th, 2008 at 4:56am

Glad to hear that you guys are getting a break from the beast - and gladder (is that a word?) that you're stickin' around here now.

Hangover headaches are still a "yes' with me (or was a few years ago when I remembed why I don't drink much anymore!)

The football player who had a "cluster" (it was in the paper) during the game was contacted and we even sent him a T-shirt, but never heard anything back from him. We got a 45 second mention on Larry King one night (call in), but that didn't go anywhere either. There was a "House" segment on, but it wasn't real accurate (House treated the kid with shrooms and didn't do that quite right). About every two years we bombard Oprah, but never hear back.

I can't really remember when (I was in high school when Chuck was in grade school !) but I think we even tried to get to our Legislature reps one time to bring it up before Congress and get some research done (I know we talked about it). Maybe it's time we TRIED again. I've always had a theory (have you been here long enough to know I have a THEORY on about everything? Wink

) -- if you sling enough **&^ on the wall - some of it is gonna stick eventually.

And YES, stockpile. Don't obscess, but be PREPARED! (I also chased a lot of Boy Scouts when I was younger - learned their motto well!)

Hope this is a long remission, but stay around - we need your support.

Hugs BD

What don't kill ya, Makes ya stronger!

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MrsT

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Re: Some questions for the more experienced
Reply #8 - Nov 15^th, 2008 at 8:19am

I've been episodic for 25 years.

Yes, I get "normal" headaches off cycle. I don't drink, so I don't know about hangover headaches, but I get tension headaches and such quite often. All my family members do, except clusters. Regular exercise, acupuncture, and massage are all "must do" for me to keep the muscles relaxed. I have however experienced migraines only twice in my life in my youth.

By all means do stock up everything. My episodes changed the pattern. My primary also renews my neuro Rx every year at the annual so that I'm never caught without "live" prescriptions either. Always three E tanks in a closet during off cycle, so I don't panic too badly or immediately. Jobs and insurance can change, so do stock up.

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Pixie-elf

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Re: Some questions for the more experienced
Reply #9 - Nov 17^th, 2008 at 7:02am

I have complicated migraines, I haven't been out of cycle yet (mine started may 28th of this year) so I can't say about OUT of cycle... But I do have the migraines sometimes at the same time as a cluster. It sucks... Some tension headaches, but not often.

What I thought were sinus headaches, turned out to be part of my clusters. For me, my number of 'headaches' were cut down once I could tell what my Shadows were.

As far as I'm concerned, cluster busting has been the best treatment I've tried. No migraines since I started it, and my hits have gotten so much better. Wanna know more?
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It's saved my life.

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maalstroom

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Re: Some questions for the more experienced
Reply #10 - Nov 17^th, 2008 at 9:56am

Hi Kit.

I don't usually suffer from headaches when out of cycle. Maybe once in a while a tension headache when being stressed out or too busy for a prolonged period of time. But nothing serious.
Hangover headaches are for the most part unknown to me, when I drank too much I get a stomache pain the next day sometimes.

Celebrities? Don't know about the US, but here in the NL none I am aware off.

Been out of cycle since july but still have two large tanks full of oxygen and three portable ones on the ready.
Six Imitrex injectables left and a bunch of Imitrex ftabs 100.
They'll be much appreciated when another one starts Wink

.

Great to see your husband is painfree - hopefully for a long long time.

Pascal.

« Last Edit: Nov 17^th, 2008 at 9:57am by maalstroom »

...AND AS A FINISHING TOUCH, GOD CREATED THE DUTCH.

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Barry_T_Coles CH.com Alumnus Offline Posts: 2073 Karratha\|,West_Australia Gender:	Re: Some questions for the more experienced Reply #11 - Nov 19^th, 2008 at 11:58pm Hi Kit "Supporters ROCK" 1: I hav'nt had a normal headache since going chronic except for when I had the flu a few weeks ago; strange feeling, shadowing one side, flu headache the other. 2: As per the others. 3: Chronic & always ready. Cheers Barry
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mezza

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Re: Some questions for the more experienced
Reply #12 - Nov 20^th, 2008 at 12:32am

I get sinus headaches out of cycle and I get headaches out of cycle that appear to be related to the barometric pressure.

I dont really drink anymore since my last cycle in March. I had 2 or 3 beers over the summer as a test when I was sure my cycle was over. I wasn't a big drinker before anyway so no real big change for me anyway. I am still pretty gunshy when it comes to 'tempting' the beast in any way shape or form- I am always on guard that a new cycle will begin.

I keep my arsenol stocked as well- I have RC seeds, my verapamil ( just in case I decide not to bust) stocked, and imitrex on hand just in case the beast returns when I least expect it.

Hoping your hubby remains painfree!

Kelly

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Ray

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Re: Some questions for the more experienced
Reply #13 - Nov 20^th, 2008 at 7:45pm

Hello Kit:

Supporters ROCK!

1) I used to get other headaches, but only rarely since cluster headaches. I've been chronic since the first cluster headache, 21 years ago. I've had 2 migraines in that time (I think 1 type is enough, frankly!)

2) I honestly don't know of any celebrities who suffer from this affliction, but the comment about Oprah was spot on!

3) You want to be prepared for the "beast" to come back, as "he" tends to, unfortunately. Think of the Oxygen, and other treatments as tools that you need to keep handy.

You need to find a "headache specialist" and be prepared for the "beast" to morph. Things that worked before sometimes stop working, AND things that didn't work before sometimes do at other times.

Wishing you well,

Ray

You have my prayers and compassion-I'm right there with you.

Dum tempus habemus, operemur bonum

*While we have the time, let us do good*

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