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New CH.com Forum › Cluster Headache Help and Support › Medications, Treatments, Therapies › Newbie with questions. LOL

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Newbie with questions. LOL (Read 1741 times)

Deborah C

Ex Member

Newbie with questions. LOL
Feb 10^th, 2009 at 3:14pm

Hi. Im Back. Where else could I go?? You guys have really, really helped me understand what the hell Im dealing with.(a SHOUT OUT to JOE)
Anyhow, I went to a new neuro. today. What a *&#@& !!. I almost walked out. After a few brain flip/flops I decided this is in my best/only interest. Well, after I put her on the spot by asking, do you have any CH patients? (yes) to my relief, YAHOOO. I have a partial diagnosis. Confused? Me 2.
OK. I either have Chronic Paroxysmal Hemicrania, or just plain ole' CH.
She has prescribed Indomethacin & oxygen. Now the fun part. I have to decide? what works. Then I go back in 2 days & give my results.
My questions are; When the Demon returns, my ear & hearing are totally affected. I also sweat profusely. I have a DAGGER through my eyeball.
If anyone can give me any feed back on their symptoms on CPH, it would be greatly appreciated. GOD BLESS ALL- DEB Undecided

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Charlotte

CH.com Alumnus

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Posts: 2385
Patterson,California
Gender: female

Re: Newbie with questions. LOL
Reply #1 - Feb 10^th, 2009 at 3:29pm

I am in the same boat. My current diagnosis is "ch complicated by occipital neuralgia". For quite awhile it SUNCT vs CH, CH vs SUNCT.

If I remember correctly, PH last 8 to 45 minutes and can occur up to 40 times a day. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Did the neuro say why paroxysmal hemicrania and not ch? Do you get more than 8 hits a day and possibly did not mention rocking & pacing? (PH can also make you rock.)

How is she having you try the Indomethacin? I use 50 mg twice a day but used 75 mg twice a day at one time. When the indomethacin did not stop the headaches, the neuro ruled out paroxysmal hemicrania. The funny thing is, it didn't stop them but it helps some, so I am still using it at this time (along with 320mg verapamil).

Very good about the O2. Did she give you a script or did her office call it in? The old books say about 8 ml flow but it takes a higher flow than that to ease most ch-ers. Also, some people use the nasal cannula to suck O2 but most prefer the non-rebreather mask, and you may need to ask for a prescription for that.

Did the neuro mention verapamil or lithium, or is that a subject she wants to discuss if the indomethacin doesn't help enough?

Good luck. You have my sympathy. It ain't easy being green.

Charlotte

« Last Edit: Feb 10^th, 2009 at 3:47pm by Charlotte »

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Deborah C

Ex Member

Re: Newbie with questions. LOL
Reply #2 - Feb 10^th, 2009 at 4:37pm

Thanks 4 the reply. You would'nt believe the difficulty I am having trying 2 find o2. I am just about to kill someone if I can't get this script. Heres what Im on verapsmil 240 mg 1'xs
   Astelin spray 40 mg 2x's
   Gabapentatin 300mg 3 x's
   Diazapam 5mg 3 x's
   Zananflex 1-2 4mg
   Meloxicam 7.5mg 2 x's
   Vicodin as needed usually 10 mg 1x's
   Flexeral as need Never makes me feel like
      a ZOMBIE.
   Imitrex -does'nt work.
   & I just got over a predisone tapper of 16 days.
This is all daily. I have to mention I have a Nasty back/neck injury:
Disc herniation @ C4-C5, blah, blah.Disc herniation/tear @ L4-L5.
Buldging discs @ L5-S1.My phone is not working my computer is not working properly. I am trying to laugh but, am crying. Cry

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ski2k

CH.com Old Timer

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Posts: 498
Muskegon, Michigan USA
Gender: male

Re: Newbie with questions. LOL
Reply #3 - Feb 10^th, 2009 at 5:34pm

IF... and that's a big "IF"... I remember right.... CPH is very commonly treated successfully with indo, and CH is not. That may explain why you were given it, and are expected to report back. If it doesn't help, than chances are it may be CH.

I'm sure others will be along shortly to either set me straight, or give you better advice...

In the mean time... HANG IN THERE!!

Adam

Here's where I got my RC (Rivea Corymbosa)seeds: I am Shaman&&Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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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: Newbie with questions. LOL Reply #4 - Feb 10^th, 2009 at 6:52pm Glad you got the posting figured out Deb, hopefully more of the people knowledgeable in CPH will chime in! Joe
Back to top	"Somebody had to say it" is usually a piss poor excuse to be mean. IP Logged

Skyhawk5 CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 1320 Ypsilanti, Mi. USA Gender:	Re: Newbie with questions. LOL Reply #5 - Feb 11^th, 2009 at 11:06pm If you have insurance, call them for help with getting the O2, they can tell you where to get set up. Also, be sure the script calls for a NON-REBREATHER mask, the nasal canula's are no good for CH.
Back to top	Though I walk through the valley of the shadow of the Beast , I have O2 so I fear him not. IP Logged

Kim D CH.com Junior Offline Posts: 77 Nashville, TN Gender:	Re: Newbie with questions. LOL Reply #6 - Feb 11^th, 2009 at 11:15pm Skyhawk5 wrote on Feb 11^th, 2009 at 11:06pm: the nasal canula's are no good for CH. I beg to differ. If it's all you have, you can make it work. Now that I have a Non-Rebreather Mask I'll use it, but if I only had a nasal canula I'd still be okay. You just have to use it in your mouth.
Back to top	Faith is being sure of what we hope for and certain of what we do not see. Hebrews 11:1. IP Logged

Linda_Howell

CH.com Moderator
CH.com Alumnus

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Do not feed the Moderators

Posts: 11927
Santa Maria, Ca.
Gender: female

Re: Newbie with questions. LOL
Reply #7 - Feb 12^th, 2009 at 12:21am

Hi, Kim, I talked to you the other day on the phone.

I have to disagree with you here on this point. There is absolutely NO reason on Gods earth why anyone has TO USE A NASEL CANNULA and suck on it.

A non-rebreather mask costs about 3.00 Trying to suck 15 LPM or more out of a nasel cannula seems almost prehistoric to me.

Note to anyone breathing out of a cannula:

Send me a PM with your address. A non-rebreather will be in the next days mail to you.

Linda

Hurt people.....hurt people. Think about it.

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on my knees Ex Member	Re: Newbie with questions. LOL Reply #8 - Feb 12^th, 2009 at 7:45am i agree with linda, a nasal cannula method is archaic. you need a non rebreather and they are cheap.
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