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retrovertigo

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If I'm here I'm likely
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It's back... and so am I
Mar 10^th, 2009 at 9:12am

Sorry to come here and whine only when cycle hits, but my wife and doctor aren't very understanding of why I, a 40 something year old man, am reduced to snivelling like a little baby.

Wife has no sympathy because I don't go to the doctor. Doctor wants me to try every migraine drug ever produced and will not consider script for O2. Migraine drugs do not get into my system fast enough and two cycles ago I started vomitting during every 5+ hit so I just throw up the oral meds anyway.

I try to tell them I am dealing with a beast that figures out how to change the rules in order to beat me every time. Last night HA came on right at bedtime like every night through the last week. I braced myself for the 2-3 hour ride. After 4 hrs. it dropped from an 8 to maybe a 4 or 5. An intense shadow? Probably but I couldn't sleep and went the whole night that way.

What now? Nap and throw my cycle off worse? That's a set up for a 10. Drag my pathetic a$$ to work on no sleep and an empty stomache ? Try to get an appointment with the doctor who treats me for migraines instead of clusters? Track down and pay out of pocket for O2?

I really need to be more proactive between cycles, but I just don't want to think about this affliction when I don't have to, because no one understands.

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Guiseppi

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Re: It's back... and so am I
Reply #1 - Mar 10^th, 2009 at 10:51am

1: Get a new doctor. This is not a condition where you can sit passively back and wait for someone to fix you. Educate yourself as to the condition and various treatment options, then find a GP or preferably a neuro who will work WITH you.

2: STOP being reactive and get proactive. DON'T wait until a cycle starts to come back here. You've fallen behind on the latest preventative and abortive options and have to play catch up. This is not a conditon you wanna play catch up with.

Sorry you're getting creamed, that sucks. Glad you've come back, lets get you on the right track friend. Riding out attacks on your own is just unacceptable. Cry

Joe

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

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BarbaraD

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Hugs to ya

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Re: It's back... and so am I
Reply #2 - Mar 10^th, 2009 at 11:23am

In the meantime - get some Red BUll and down a can at the FIRST sign of a hit and try melatonin at night before bedtime.

BUT do find a doctor that KNOWS what a damn CH is.... and get a script for O2 and use it PROPERLY (there's directions on this site for proper use - READ THEM! - ask questions, but do it properly).

What Joe said .... this is not something to play with. You gotta be your own advocate in treating this condition.

Now get to work and kick some CH rear!!!!!

Hugs BD

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What don't kill ya, Makes ya stronger!

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Kimmie CH.com Veteran Offline OW!! Posts: 187 US Gender:	Re: It's back... and so am I Reply #3 - Mar 10^th, 2009 at 2:00pm I agree. Get proactive. Even though my cycle is starting to fizzle, I'm still going to a neuro my GP provided me here in TX. since i moved, on March 15th. O2O2O2!! I think when we ECH's go out of cycle its good to get away from here sometimes, and enjoy LIVING!
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retrovertigo

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Went to GP
Reply #4 - Mar 10^th, 2009 at 7:12pm

He apologized for treating me for migraines (I don't mind people referring to my headaches as migraines until I'm in a cycle.)Said I don't need neuro we should be able to find something that works. He's not the most knowledgeable doctor, but he does take time and listen.

He gave me script for nasal imitrex (though pharmacy doesn't stock and will take time to get.) I still have relpax from last cycle, but that didn't work well. Delayed delivery or rebound?

Doc said he would consider script for O2 but said he doesn't know where it's available and doesn't think insurance will cover. Not sure I care about insurance if it works. My cycles tend to be infrequent, six weeks long once every two years. I think it sounds like best option as triptans have been either inconsistent or causing worse rebounds.

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ClusterChuck

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The BEAST rises again,
and again, and again,
and .

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Re: It's back... and so am I
Reply #5 - Mar 10^th, 2009 at 7:32pm

A couple things about oxygen ...

See if you can get him to prescribe a regulator that goes up to 25LPM ...if he can't do that, or your supplier does not have one available, let us know, and we can help you get one.

Some people have good luck with 8LPM (but few do) and that is great. Most others use 15LPM (more the standard for us). But many of us have found that the higher LPM (Liters Per Minute) works MUCH faster in aborting the attack, and that is the goal (other than CURING), right?

I also strongly suggest buying an O2PTIMASK^TM as it is SO much more effective! You can buy one (or more) from the CH.com store tab on the left side of your screen.

If there are financial constraints on getting any of this equipment, there IS assistance available.

Good luck!

Chuck

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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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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: It's back... and so am I Reply #6 - Mar 10^th, 2009 at 7:35pm The good news is if insurance won't cover it, it's fairly inexensive. I rented E-tanks for years before my insurance would pick it up. $4-$5 a month to rent the tank, $12 or so for each fill up. Joe
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retrovertigo

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Thanks to everyone who responded.
Reply #7 - Mar 10^th, 2009 at 7:41pm

I was very despondent this morning after the all night ouch. First time that's happened to me. I'm used to late nights, but I was unprepared for all night. Because my cycles are infrequent I have limited sampling size for testing abortives. However, my feeling is that the triptans have not prevented CH's just staved it off for a night or two to be followed by a worse one.

The only thing that has completely worked for me is manning up and gutting it out. But when I think I'm prepared for anything I've already seen the CH's throw me a curve. After 18 years of "classic symptoms" the vomiting started. Then the 2-3 hour HAs turned into the 3-4 hour HA's. Now they're becoming the 7-8 hour HA. Just to prove to me that I am too weak to gut it out.

The pain is worse than anything I've ever felt before, but it's just pain, right? Weakness leaving the body. It's the mental breakdown that comes with it that is really getting me. The lack of sleep. The overwhelming feeling that something that hurts this much must be doing permanent damage to my cognition. Knowing that if I stand up quickly I will start to vomit, but being completely unable to control my actions while looking for that body position that will somehow ease the pain over the right eye ever so slightly. Getting through 3 hours of agony and telling the CH "Ha, I beat you. " Only to have it get the last laugh and keep going for another 3 hours.

I need to try O2.

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Dave_C

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I love Red Bull!!

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Re: It's back... and so am I
Reply #8 - Mar 10^th, 2009 at 10:53pm

I feel your pain my friend. When I am not in cycle, I don't even think about doctors, this website, meds, or anything even remotely related to these things.
I however have made a commitment to myself and my wife that I will be proactive from now on. I went one full year without a hit. I thougth they were gone.(ha ha)
The Red Bull works, and drink alot of water, it seems to be helpig me alot. I'm taking magnesium and taurine also. I have been able to keep them somewhat manageable, so far. But I know the nature of the beast is to breaks down my defenses slowly, so as to give me the illusion that I am winning, then he strikes with a vengeance.
Good luck to you my friend and hang there, yu are not alone on this ride, none of us are, I'm grateful for that. For years I thougth I was crazy.

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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: It's back... and so am I Reply #9 - Mar 11^th, 2009 at 12:07am Dave makes a good point.....no matter how tough the battle, you never have to face it alone again. Hang in there friend. Joe
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southwalessunshine

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Re: It's back... and so am I
Reply #10 - Mar 24^th, 2009 at 7:07am

I'm the same....I'm here when it gets bad then I read all the posts I missed and feel bad. I too have decided to stick at it during the times I'm only suffering half as much.
The only thing that aborts with most success is the sumatriptan injections but at 2 a day limit, I have to decide which one's I ride out and which I inject. When you get hit after hit for days on end that's not alot of injections. 02 is a slight help but if I miss the start of it it's no help. But Imthink I may need a different mask, which I'm looking into.
We all know your pain all too well, I hope this site brings you the support and advice I have gotten from it.
x

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keep your face to the sunshine and you will never see the shadow.&&Alone we can do so little, together we can do so much.&&Walking with a friend in the dark is better than walking alone in the light.&&Helen keller

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Melissa

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Don't give up!

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Re: It's back... and so am I
Reply #11 - Mar 24^th, 2009 at 9:38am

Hello retrovertigo,

Triptans are abortives, not preventatives. Imitrex nasal spray works in about 15 min., Imitrex injections work in as little as 8 min. (from my experience). From what I'm reading, it sounds like you need to get on a preventative. Please research all you can in the Medications section of this website and also the OUCH website (link is listed on the left hand side of your screen). Also, please print out this paper by Dr. Todd Rozen and present it to your doctor: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Hang in there,
~mel

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Diseases can be our spiritual flat tires - disruptions in our lives that seem to be disasters at the time but end by redirecting our lives in a meaningful way. ~Bernie S. Siegel

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