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demonh8r

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Never quit fightin

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Ohio
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Just officially diagnosed
Mar 23^rd, 2010 at 5:47pm

Live in Cincinnati, just left Dr. Schmerler's office and he diagnosed me with CH today, which i kind of already knew that I had.

Anyone living in Cincinnati area suffering from ch definitely should see Dr. Schmerler, he is very knowledgeable, helpful, and caring. He took the time to explain the condition, and all the meds he was prescribing to me.

I would like to hear some feedback of the meds I'm going to be on.

I just got prescriptions for: Maxalt, Verapamil, depakote, and methylprednisolone or something like that.

Just looking for feedback from people that have used these meds before. Thanks guys.

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bejeeber

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Re: Just officially diagnosed
Reply #1 - Mar 23^rd, 2010 at 6:18pm

Those sound to me like some pretty straight ahead, reasonable prescription choices he made.

If the prednisone is a tapered dose, where you're only at the high dose for a couple days, that might get ya some relief without the severe permanent side effect risk that sustained high doses of prednisone will bring to the table (I'm speaking from experience there).

As far as preventative drugs go, Verapamil at a relatively high dose is a popular one around here from what I've noticed.

Maxalt - I haven't tried it, but I know some have had success with it as an abortive, so you might like it.

Even with a rare doctor such as yours who has it together regarding CH, it's good to take matters into your own hands and not just do whatever he says - at least you want to have a back up plan. O2 a la the oxygen info link on the left would be a good choice there.

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« Last Edit: Mar 23^rd, 2010 at 6:22pm by bejeeber »

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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FramCire CH.com Alumnus Offline Life like a froward child must be humored a little Posts: 1710 Bolivar, MO USA Gender:	Re: Just officially diagnosed Reply #2 - Mar 23^rd, 2010 at 8:38pm Did you get Maxalt in pill form or the MLT that melt in your mouth? MLT works slower than Imitrex injects, but Maxalt MLT works more often for me. You need to call your doc back about Oxygen!!!! Otherwise, he did you well! EDITTED to read Maxalt not prednizone
Back to top	« Last Edit: Mar 23^rd, 2010 at 8:53pm by FramCire » You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do IP Logged

Cece CH.com Junior Offline Clusters are the devil! Posts: 37 Tucson, AZ Gender:	Re: Just officially diagnosed Reply #3 - Mar 23^rd, 2010 at 9:24pm Verapamil in gel capsules better that regular pill form, for my husband anyways. Sorry to hear the bad news! Bless you
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Guiseppi

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Re: Just officially diagnosed
Reply #4 - Mar 23^rd, 2010 at 9:28pm

Welcome to the board! Sounds like he does know his stuff, still worth while to spend some time reading here as knowledge is power with battling the beast.

And Oxygen....yeah....31 years here and it's still my first line and most effective abortive. Do read the oxygen info link on the left and chat with your doc about it.

Welcome home!

Joe

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

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LasVegas CH.com Sponsor Offline Episodic CH since 11 yrs old, now 50. Posts: 2020 north of the 60th parallel Gender:	Re: Just officially diagnosed Reply #5 - Mar 24^th, 2010 at 12:21am Congratulations on finding a dr who is willing to treat you effectively. o2 is a must
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demonh8r

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Re: Just officially diagnosed
Reply #6 - Mar 24^th, 2010 at 5:53am

Fram, the Maxalt that I have is the kind that dissolves on your tongue. I've read some good things about it.
Maxalt better be pretty damn good considering the price, $243.00 for 9 tablets. Thankfully I have insurance and it only cost me 30.00.
So I took the meds around 7 pm 3/23 and fell asleep, I hadn't slept in two days, but all the meds made me kind of dizzy. I woke back up around 9 pm, and was really dizzy/lightheaded. fortunately I was able to get back to sleep after a few minutes and get some MUCH needed rest.

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« Last Edit: Mar 24^th, 2010 at 7:05am by demonh8r »

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Lefty CH.com Alumnus Offline Posts: 759 Gender:	Re: Just officially diagnosed Reply #7 - Mar 24^th, 2010 at 6:47am Educate Dr. Schmerler on the positives of 02 and you Cincinnati folks have a good Doc to work with.. Lefty
Back to top	« Last Edit: Mar 24^th, 2010 at 6:51am by Lefty » "When money's tight and is hard to get And your horse has also ran, When all you have is a heap of debt A PINT OF PLAIN IS YOUR ONLY MAN." — Flann O'Brien IP Logged

FramCire

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Re: Just officially diagnosed
Reply #8 - Mar 24^th, 2010 at 11:32am

demonh8r wrote on Mar 24^th, 2010 at 5:53am:

Fram, the Maxalt that I have is the kind that dissolves on your tongue. I've read some good things about it.
Maxalt better be pretty damn good considering the price, $243.00 for 9 tablets. Thankfully I have insurance and it only cost me 30.00.
So I took the meds around 7 pm 3/23 and fell asleep, I hadn't slept in two days, but all the meds made me kind of dizzy. I woke back up around 9 pm, and was really dizzy/lightheaded. fortunately I was able to get back to sleep after a few minutes and get some MUCH needed rest.

I'm not a fan of trying so much at once but this cocktail seems fine. I hope you are using the Maxalt MLT only to abort a headache.

My suggestion with the Maxalt MLT (since it is my 2nd line of defense) is that you use it 1 time a day max and try and use it for a headache that is at night so you can sleep. As with most abortive meds, you want to take it as soon as you can. The sooner, the more effective!

Hopefully prednizone will give you some (or a ton of relief) and you can save your Maxalt. Insurance will only cover 6-9 Maxalt a month, so if it works, use it smartly! Also, ask any doctor you see if they might have samples. Maxalt MLT is often sampled out to Docs.

Keep reading and sharing your experiences here. It will only help you and others!!!!!!

Welcome aboard to the cruiseship (ch.com) you really don't want to be invited to join but is great to be on!

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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do

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FramCire CH.com Alumnus Offline Life like a froward child must be humored a little Posts: 1710 Bolivar, MO USA Gender:	Re: Just officially diagnosed Reply #9 - Mar 24^th, 2010 at 11:34am Also, if Maxalt (or imitrex) works for you, fill your script as soon as possible even when you are out of cycle! If the money isnt a big issue, keeping a stockpile of it can not hurt.
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Guiseppi

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Re: Just officially diagnosed
Reply #10 - Mar 24^th, 2010 at 11:45am

FramCire wrote on Mar 24^th, 2010 at 11:34am:

Also, if Maxalt (or imitrex) works for you, fill your script as soon as possible even when you are out of cycle! If the money isnt a big issue, keeping a stockpile of it can not hurt.

EXCELLENT advice, enjoy your pain free time, always assume a cycle will start tomorrow and NEVER find yourself unprepared to do battle.

Joe

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

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demonh8r

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Re: Just officially diagnosed
Reply #11 - Mar 24^th, 2010 at 1:40pm

I agree, excellent advice. Anyone know how long maxalt mlt is good for?

My last cluster cycle was 2007. I'm hoping it will be 3 years or longer before they return again.

I took one earlier, i dont know if it helped abort the hit or not. attack was around 45 min, woke up with it so couldnt exactly ingest the tablet at the first sign of the hit. When I woke it was already at kip 6-7

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bejeeber

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Re: Just officially diagnosed
Reply #12 - Mar 24^th, 2010 at 1:59pm

demonh8r wrote on Mar 24^th, 2010 at 1:40pm:

I agree, excellent advice. Anyone know how long maxalt mlt is good for?

All I can tell you is that imitrex retains it's potency for many many years - 3 years would be nuthin - so I'd hope Maxalt would be the same.

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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demonh8r

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Never quit fightin

Posts: 28
Ohio
Gender: male

Re: Just officially diagnosed
Reply #13 - Mar 25^th, 2010 at 9:21am

Been taking meds listed above for 3 days now. Yesterday, started getting pain in my left arm.
Never happened to me before, was wondering if it is a side effect from one of the drugs listed? I read through the prescription papers given to me by pharmacist but they don't say anything.
Anyone else experienced the same thing?

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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: Just officially diagnosed Reply #14 - Mar 25^th, 2010 at 10:34am I don't remember reading about anyone experiencing that side effect. Definitely worth a quick call to the doc, run it by him just to be safe. Joe
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demonh8r CH.com Junior Offline Never quit fightin Posts: 28 Ohio Gender:	Re: Just officially diagnosed Reply #15 - Mar 25^th, 2010 at 11:32pm I think its the medrol causing the pain in my arm. I've read about the side effects and they are horrendous. It has about 2 pages worth of side effects. Also has terrible reviews on webmd.com This drug seems like its more trouble than its worth!
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Jackie CH.com Moderator CH.com Alumnus Offline Go For It!!! Posts: 5903 Goshen, IN Gender:	Re: Just officially diagnosed Reply #16 - Mar 27^th, 2010 at 6:38pm How's the arm?
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napa1026

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Re: Just officially diagnosed
Reply #17 - Mar 28^th, 2010 at 8:27pm

Maxalt sent my CH absolutely through the roof, only tried it once. I know it works for some, but it gives me flash backs just hearing the name.
I take verap, Imitrex and I have learned to use my 02 correctly due to this site. I use the 02 at 15lpm for at least 10 minutes and do an imitrex, then poof* the headache is gone (if I catch it in time). I am in the middle of a bout at this time!! 3 to 6 a day.
Hoping for pain free days soon, you and I.
Welcome to the officially diagnosed club and congrats on the finding a doctor you like.
Steve

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