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finally....people who understand (Read 6272 times)

kittysezmeOUCH

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finally....people who understand
Aug 5^th, 2008 at 4:28pm

I never knew this place existed..... I am so happy to be here and thankful a good friend of mine found this place for me. My clusters are not all that sever in comparison to some of the folks' episodes I have read on his site. I am greatful to have a friend who was concerned enough to help me in this endeavor. It is hard to explain the severity of the pain to someone....... I have offered to many to bash them upside the head with a hammer Grin

but oddly enough no one wants to take me up on that offer. Shocked

I wonder why. I have a few questions and don't know where to start......

but I will be back as much as possible and look forward to communicating with you all. Cool

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midwestbeth Ex Member	Re: finally....people who understand Reply #1 - Aug 5^th, 2008 at 6:21pm Hi Kitty and welcome. Sorry to hear you are in pain right now. Let us know a little about yourself......what are you using for prevents and aborts.....do you have 02? Read over the site and feel free to ask questions. Beth
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kittysezmeOUCH

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Re: finally....people who understand
Reply #2 - Aug 5^th, 2008 at 9:39pm

Thank you for the welcome......the pain is quite bareable this time of year....it is October 18th I dread.....that is the day when everything is so bad.....5:30 am the pain starts by 6:15 I want to put my head thru a window and by 7:45 it is gone and I am left with a dull ache and an eye that feels like it won't stop twitching. This goes on for 3 days.....

anyother attack begins at 3:12 am goes on til 5:30.....

I am on Imitrex and it does some good and started on the O2 last year and only do that when they are at the worst....generally Mid October and I take 6Ml per min for 15 min.....

otherwise I drink tons of water and have been experimenting with preventative measures with Motrin of all things.....

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mezza

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Re: finally....people who understand
Reply #3 - Aug 5^th, 2008 at 9:58pm

Hi kitty

motrin isn't a preventative and hasn't proven to be very successful in helping with CH at all. Preventative meds are things like lithium, verapamil, topomax , depakote. See link at left - medical info- Also immitrex shots work the fastest as an abortive medication if you are going to the trex. Some folks get the pills and find out that for them the pills don't work fast enough- the shot aborts in about 3-5 minutes for me

I am not the resident expert on oxygen. But what I do know is that 8ml is too low. Most recommend 15 is minimum to do some real damage to the beast. When I did first get prescribed o2, my regulator only went to 7lpm - not terribly effective. I could sort of keep the shadows from progressing but it would never really abort a hit.

You need to get yourself to a doctor as soon as you get to get your arsenol stocked and game plan ready. Motrin and the low flow rate O2 with the scant amount of immitrex you'll get your insurance to cover will keep you pretty darn miserable when October 18th comes around.

Incidentally - why october 18? Do you have some history of always going into cycle on that day? Grin

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ClusterChuck

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Re: finally....people who understand
Reply #4 - Aug 5^th, 2008 at 10:04pm

kittysezmeOUCH wrote on Aug 5^th, 2008 at 9:39pm:

I am on Imitrex and it does some good and started on the O2 last year and only do that when they are at the worst....generally Mid October and I take 6Ml per min for 15 min.....

otherwise I drink tons of water and have been experimenting with preventative measures with Motrin of all things.....

OMG!! GIRL, we have to talk!

You have your treatment all messed up! Let me try to help you here.

First of all, you have your abortives backwards. As soon as you feel a hit coming on, hit the oxygen. DON'T save it for the worst ones! Oxygen should be your FIRST line of defense! ALSO, crank that level up to AT LEAST 15LPM. 25LPM is even better. And don't worry about how long you are on it. Navy fighter pilots use it for several hours at a time, so don't worry about being on it too long.

If you do not have a regulator that goes that high, you can find them on eBay at a fairly reasonable cost. If you are still having trouble finding them, let me know.

Imitrex is the method that you save for the worst hits! What type of Imitrex are you using? The pills? The nasal spray? The injectable? Most of us get the fastest results using the injectable method.

You also need to talk to your doctor about REAL preventatives. Motrin is worthless (for clusters). You need some REAL cluster meds. Many find going on a prednesone taper, to stop them right away, and then another preventative, at the same time, so that by the time the pred taper is done, the other med will have built up enough to take over. Verapamil, by itself, or in combination with lithium, or topomax, are good methods to try. Some take all three to get the relief they need.

There is SO much more we need to impart, but it is best for you to read all the information that is here.

But, ask any specific questions that you may have, and ONE of us, at least, should be able to answer your questions. Between us, we KNOW what works and what doesn't. NOTHING makes us happier, than to find that we were able to help a fellow clusterhead get some relief.

Chuck

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Keep fire extinguisher available, and charged.

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kittysezmeOUCH

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Re: finally....people who understand
Reply #5 - Aug 6^th, 2008 at 10:20am

Ok so much info
on imitrex....pills...was on injections...hate giving myself shots...no nasal spray...drips own my throat

I am also on what is normally given for migraine sufferes it is a med called Axert...that stuff is decent...

i drink so much water i think i will float away....upwards of over a gallon a day

never heard of the red bull theory...can it be the sugar free stuff

and have any of you heard about Botox injections??? I know they are used for Migraine therapy
also there is a new surgery out where they make an incision in the eye lid and do something with the muscles that are in the forehead above they eye

they are the same muscles that control frowning...this is also used in migraine therapy....

altho migraine is far different than cluster I have had both know what they are like

have any of you heard about this

also October 18th is when the demon is at the relentless pinnacle......

thank GOD it is only for 3 days....and always in the early morning so by 7:30 or so nothing til the next day.....

and lucky me to have a boss who simply tells me..."take an aspirin and get over it."

Grin

ok at work not much time to do this and still many questions and informaion to take in

i will be back later today

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Guiseppi

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Re: finally....people who understand
Reply #6 - Aug 6^th, 2008 at 10:34am

Hi and welcome to the board, Chuck and Mezzas advice, right on the money! Specially on the 02, 30 years of battling the demon and 02 is still my first line and most effective abortive.

There isn't any really effective surgery for this condition. The pain you feel behind your eye, your forehead and the aching along your teeth, that's the pathway of the trygeminal nerve, (sp?), it's where our pain comes from. I used to think if I could snip the nerve at the base of my skull I could make the damned things stop!

Red Bull, Monster, Rock Star, or any generic energy drink. Sugar Free is fine, just make sure it has the combo of caffeine and taurine, many can abort an attack or at least substantially reduce it's intensity by chugging one of these at the first hnt of an attack. Linda leaves hers open in the fridge so it goes flat and is easier to chug.

I haven't seen anyone post about botox being effective for CH. I've seen a lot of the articles relating to it's effectiveness on migrains, I was hoping!

Glad you found us, the others are correct, you are only scratchng the surface of the available treatments to make this condition a LOT more bearable. Welcome home

Guiseppi

"Somebody had to say it" is usually a piss poor excuse to be mean.

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Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: finally....people who understand Reply #7 - Aug 6^th, 2008 at 10:43am Hi Kitty! Welcome. Keep reading. There is a lot of help here! Pain free wishes, Jeannie
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BarbaraD

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Re: finally....people who understand
Reply #8 - Aug 6^th, 2008 at 12:17pm

Welcome to Clusterville.

I second and third the O2 opinions. Get the flow rate up to at least 15liters and 25 is even better. Listen to Chuck and Joe -- they know their stuff. I did and am eternally grateful to them (did I say I was grateful to Chuck - must be off my feed today Wink

). And be SURE you have a NON-REBREATHER mask - that's important.

I also have migraines (hate those damn things). The O2 works pretty well for them as well (my neuro has started using it in treating migraines as well as Clusters - says it's helping his migraine patients).

The energy drinks also help migraines as well as Clusters (this according to my neuro who suffers from migraines as does his son - he's been using the energy drinks for about a year now and swears by them). Be sure the taurine is at least 1000mg. They all come in sugar free, so that's not a problem. I drink them along with the O2 when I go above a 5 or 6.

On the left side there's a Water treatment that has been helpful to a lot of people over the years. This may be what's helping you keep your HA under control.

Let us know how you're progressing....

Hugs BD

What don't kill ya, Makes ya stronger!

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midwestbeth

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Re: finally....people who understand
Reply #9 - Aug 6^th, 2008 at 2:58pm

Hi Kitty,

You have been given some good advice. I will also say that motrin and other otc meds do nothing to aleviate the pain from ch. You may as well be popping tic tacs.

There are many energy drinks out there..........as long as they contain close to 1000 mg of Taurine, it does not matter what brand or type you drink. It is a matter of taste and what you like.

October is also my worst time of year also......I hope you get some pf time and the beast forgets you in a couple months!!

Take care,
Beth

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barry_sword CH.com Alumnus Offline Mountain Biking Keeps Me Sane Posts: 3947 Bracebridge, Canada Gender:	Re: finally....people who understand Reply #10 - Aug 6^th, 2008 at 8:16pm Hi Kitty and welcome. Sorry you had to find us. You are not alone anymore. Barry
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kittysezmeOUCH

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Re: finally....people who understand
Reply #11 - Aug 6^th, 2008 at 9:02pm

Wow!!!! So much support and help...

has anybody tried melatonin or capsaicin???

I know melatonin is found naturally in the body...i think it is the hormone that tells your brain "it's night and dark and you need to sleep and i think capsaicin is the heat found in peppers or their seeds.

I still don't understand how red bull works but I will start stocking up for my next cycle...~please let me remain episodic~

I may be wide awake for days but if it diminishes the pain...it will be well worth it all.

I am truly sympathetic and empathetic that we all have to be here....but thankful as well

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BarbaraD

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Re: finally....people who understand
Reply #12 - Aug 6^th, 2008 at 9:59pm

Yep, a lot of us take melatonin at night before bed. Start with a low dose and work up to what works for you. It helps you get thru the REM sleep (where the CH starts). I take 12-15mg and usually sleep thru the night.

For some reason, the energy drinks don't keep me awake - but neither does coffee. Guess I'm just a weird person (and Chuck don't you dare touch that one!). But the caffeine and taurine together somehow work to constict the blood vessels that cause the pain and it helps to abort the headache. Stock up and be sure to chug them. Linda H. opens them and lets the carbonation out before she chugs them - makes it easier to get down -- I've started doing this and it's a lot better. If carbonation bothers you, you might want to try that.

Hugs BD

What don't kill ya, Makes ya stronger!

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Guiseppi

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Re: finally....people who understand
Reply #13 - Aug 6^th, 2008 at 11:19pm

As fas as the capsium...pepper juice goes......it's still in the infant stages. There are studies going on where they are using it for knee surgeries and skipping pain killers all together. There is definitely something to it, the way this chemical reacts to our pain receptors, and I will not be suprised if in 3-5 years, they refine a part of it that's useful for us. For now, I wouldn't be spraying any of it up your nose as you're liable to find it just burns like a son of a gun! Grin

Keep reading and asking questions, knowledge is power and there's oodles of it here.

Guiseppi

"Somebody had to say it" is usually a piss poor excuse to be mean.

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ClusterChuck

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Re: finally....people who understand
Reply #14 - Aug 6^th, 2008 at 11:54pm

BarbaraD wrote on Aug 6^th, 2008 at 12:17pm:

(did I say I was grateful to Chuck - must be off my feed today Wink

)

BarbaraD wrote on Aug 6^th, 2008 at 9:59pm:

Guess I'm just a weird person (and Chuck don't you dare touch that one!).

BarbaraD wrote on Aug 6^th, 2008 at 12:38pm:

I'm an experience to meet in person Cheesy

(no wise cracks Chuck!)

Why is that ~~nasty old bittie~~ woman always picking on sweet, shy, innocent, conservative, well mannered, prim and proper ME???

I never done nuttin to no one ....

<SIGHHhhhh>

Chuck

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Keep fire extinguisher available, and charged.

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kittysezmeOUCH

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Re: finally....people who understand
Reply #15 - Aug 8^th, 2008 at 12:03am

fizziness doesn't bother me one bit......but i am willing to forego a few nights sleep during my cycles (2 times a year) if it means i won't have to deal with the pain.....
as for capsacin...hot stuff really doesn't bother me....
but i am not about to inhale pepper juice..... Cheesy

has anybody heard of botox injections helping in cluster therapy???? i know they use it for migraine

poor chuck needs a cookie Grin

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ClusterChuck CH.com Alumnus Offline The BEAST rises again, and again, and again, and . Posts: 5394 Greenville, North Carolina Gender:	Re: finally....people who understand Reply #16 - Aug 8^th, 2008 at 12:14am kittysezmeOUCH wrote on Aug 8^th, 2008 at 12:03am: poor chuck needs a cookie *Chuckie wants COOOOOKIE!!!*
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: finally....people who understand Reply #17 - Aug 8^th, 2008 at 1:40am DO NOT FEED THE CHUCKIE!!! For that matter stay away from the chuckie cage, he gets riled there is no settling him down! I haven't seen anyone posting success with botox for CH, I've seen a lot of articles about the successes they've had using it for migrains. Guiseppi
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kittysezmeOUCH

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Re: finally....people who understand
Reply #18 - Aug 8^th, 2008 at 9:11am

Stay away from the Chuckie ~menatl note~
Wondering why to stay away....
Ok...So I have looked some of these meds up and most of them are in the same classification

Well....I still have over 3 months before the dreaded October18th cycle....Plenty of time to get a game plan together.....

and if my game plan fails...well i can alwys drop back and punt Grin

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: finally....people who understand Reply #19 - Aug 9^th, 2008 at 12:47am And by all means, stay around on and off cycle, there is just so much info here, and you'd be suprised how much you can help others just by your presence. Wishing you a skipped cycle this year! Guiseppi
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kittysezmeOUCH

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Re: finally....people who understand
Reply #20 - Aug 9^th, 2008 at 6:39am

I hope I skip it too...fall cycle is he worst the absolute worst....2 years ago I threw a chair at a co-workers head.....It was at 6:05 in the morning...I told him to back off and he didn't understand the pain....he hasn't bothered me about anything since...I hate the October cycle....

Sometimes when there is a good cold snap the cycle isn't as bad as it can be but it has to get cold

I wonder why anti-histamines don't help much

does anyone know why anti-histanines don't do anything

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Kimmie CH.com Veteran Offline OW!! Posts: 187 US Gender:	Re: finally....people who understand Reply #21 - Aug 9^th, 2008 at 3:21pm [quote author=4F45504C565D4A6E4B240 link=1217968089/0#0 date=1217968088]I My clusters are not all that sever in comparison to some of the folks' episodes I have read on his site. quote] Ooh...Ooh...I'll trade ya!!
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kittysezmeOUCH

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Re: finally....people who understand
Reply #22 - Aug 10^th, 2008 at 12:16am

OH NO....I will keep my cycles tyvm.....I know the pain...and if I had to live with it more than I do I might go out of my mind...

SO, I give props and kudos to those who suffer..... Y'all have my highest respect for suffering so much and still enduring......

Sometimes I really don't flippin' get it...we can send men into uter space...discover other life forms but still medical science would rather come up with something lame for hair restoration and leave the people who really suffer left to well suffer...

dammit

so hear is to y'all who deal with the devil daily ....

real troopers you are

much love
n
respect

Kathi Smiley

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kittysezmeOUCH

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Re: finally....people who understand
Reply #23 - Aug 10^th, 2008 at 12:53am

I know I was warned not to "feed the Chuckie" but he looks so hungry.

So, here ye be Chuckie.....

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hope you enjoy

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ClusterChuck CH.com Alumnus Offline The BEAST rises again, and again, and again, and . Posts: 5394 Greenville, North Carolina Gender:	Re: finally....people who understand Reply #24 - Aug 10^th, 2008 at 12:51pm Mmmmmmm ... Sammich !!!! Milk !!!! and *COOOOOOOKIES !!!!* Chuckie Monster
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