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 :-/

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.  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

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

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. :'(

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

Glad you got the posting figured out Deb, hopefully more of the people knowledgeable in CPH will chime in!

Joe

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.

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.

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

i agree with linda, a nasal cannula method is archaic. you need a non rebreather and they are cheap.