New CH.com Forum
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl
Cluster Headache Help and Support >> Cluster Headache Specific >> Just officially diagnosed
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1269380865

Message started by demonh8r on Mar 23rd, 2010 at 5:47pm

Title: Just officially diagnosed
Post by demonh8r on Mar 23rd, 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.

Title: Re: Just officially diagnosed
Post by bejeeber on Mar 23rd, 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.

Title: Re: Just officially diagnosed
Post by FramCire on Mar 23rd, 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

Title: Re: Just officially diagnosed
Post by Cece on Mar 23rd, 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 :)

Title: Re: Just officially diagnosed
Post by Guiseppi on Mar 23rd, 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

Title: Re: Just officially diagnosed
Post by LasVegas on Mar 24th, 2010 at 12:21am
Congratulations on finding a dr who is willing to treat you effectively.  o2 is a must

Title: Re: Just officially diagnosed
Post by demonh8r on Mar 24th, 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.

Title: Re: Just officially diagnosed
Post by Lefty on Mar 24th, 2010 at 6:47am
Educate Dr. Schmerler on the positives of 02 and you Cincinnati folks have a good Doc to work with.. ;)

[smiley=sgrin.gif] [smiley=sgrin.gif] [smiley=evil.gif] [smiley=sgrin.gif] [smiley=sgrin.gif]



Lefty

Title: Re: Just officially diagnosed
Post by FramCire on Mar 24th, 2010 at 11:32am

demonh8r wrote on Mar 24th, 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!

Title: Re: Just officially diagnosed
Post by FramCire on Mar 24th, 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.

Title: Re: Just officially diagnosed
Post by Guiseppi on Mar 24th, 2010 at 11:45am

FramCire wrote on Mar 24th, 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

Title: Re: Just officially diagnosed
Post by demonh8r on Mar 24th, 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

Title: Re: Just officially diagnosed
Post by bejeeber on Mar 24th, 2010 at 1:59pm

demonh8r wrote on Mar 24th, 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.

Title: Re: Just officially diagnosed
Post by demonh8r on Mar 25th, 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?

Title: Re: Just officially diagnosed
Post by Guiseppi on Mar 25th, 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

Title: Re: Just officially diagnosed
Post by demonh8r on Mar 25th, 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!


Title: Re: Just officially diagnosed
Post by Jackie on Mar 27th, 2010 at 6:38pm
How's the arm?

Title: Re: Just officially diagnosed
Post by napa1026 on Mar 28th, 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

New CH.com Forum » Powered by YaBB 2.4!
YaBB © 2000-2009. All Rights Reserved.