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kellybell73 CH.com Newbie Offline I Love CH.com! Posts: 14	MERRY CHRISTMAS OUCH Dec 25^th, 2009 at 1:36am Here I sit waiting for Santa and the beast returns, I have my high flow 02 now so that helps and what was a ogre is now a gremlin that is dancing on the right side of my head. Was just looking for friendly support tonight as my family is spending the night together and I am thankfully tied to my 02 at home.
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Mac_Muz CH.com Old Timer Offline new hampster "eat seeds or die" Posts: 432 Tamworth New Hampster Gender:	Re: MERRY CHRISTMAS OUCH Reply #1 - Dec 25^th, 2009 at 3:15pm Sorry we all missed you... I hope you remained on o2 long enough to send the beast packin'..
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XoDustinXo

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Re: MERRY CHRISTMAS OUCH
Reply #2 - Dec 25^th, 2009 at 3:20pm

kellybell73 wrote on Dec 25^th, 2009 at 1:36am:

Here I sit waiting for Santa and the beast returns, I have my high flow 02 now so that helps and what was a ogre is now a gremlin that is dancing on the right side of my head. Was just looking for friendly support tonight as my family is spending the night together and I am thankfully tied to my 02 at home.

have you tried any medications?

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kellybell73

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Re: MERRY CHRISTMAS OUCH
Reply #3 - Dec 29^th, 2009 at 9:39pm

The last week has been a tough one for me. I am on the Prednisone taper , finally down to twenty after two weeks, on the Verapamil 240SR , Trileptal 1200mg and have 10L o2 at home. I have been making regular trips to the ER because my doc refuses to prescribe any rescue drugs. (I am not looking for narcotics) but Toradol and Reglan seem to work when the pain is not taken away by the 02 and as a last resort the intra nasal lidocaine (yuck) takes the edge off . I am allergic to ergots which makes the imitrex and DHE off limits so does anyone have any ideas at this point. I am barely working and just hanging on here. I know my cycle will end eventually which is the only thing that keeps me going. That and of course my beautiful children and the support of my family.

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Skyhawk5 CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 1320 Ypsilanti, Mi. USA Gender:	Re: MERRY CHRISTMAS OUCH Reply #4 - Dec 29^th, 2009 at 11:07pm Look into Zomig. Don
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Linda_Howell

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Re: MERRY CHRISTMAS OUCH
Reply #5 - Dec 30^th, 2009 at 12:06am

Quote:

I have my high flow 02 now so that helps and what was a ogre is now a gremlin that is dancing on the right side of my head.

You thanked OUCH...as a long-time member of OUCH....there is nothing more that OUCH can be grateful for, than folks like you... that we have helped.

May the gremlin continue to grow smaller and smaller. Wink

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

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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: MERRY CHRISTMAS OUCH Reply #6 - Dec 30^th, 2009 at 1:00am My only suggestion would be kicking up the delivery level, 10 LPM is on the way low side, most start at 15 LPM and go up from there. Some have found no relief at 15 and miraculous results at 25, worth a shot. Joe
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candid CH.com Newbie Offline I Love CH.com! Posts: 16	Re: MERRY CHRISTMAS OUCH Reply #7 - Jan 16^th, 2010 at 9:48am I'm also on trileptal.. been on it for a month..I don't read about too many cluster sufferers trying this med.. Have you been on it long? Do you find trileptal affects the clusters??
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kellybell73

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Re: MERRY CHRISTMAS OUCH
Reply #8 - Jan 16^th, 2010 at 10:46am

The trileptal and verapamil combo kept me almost pain free ( no 5's Wink

or above) for about 18mos until my Dr. switched my antidepressants ; which we assume triggered the latest series. I am on a fairly average dose and the drug can have some negative side effects which I hope your Dr. discussed with you. The biggest problem being that it can lower your sodium levels so periodic blood draws and high sodium diet is sometimes necessary (especially in the summer...I keep a jar of pickles handy) It is effective for my trigeminal neuralgia. Not sure if this helps at all and again I can only speak to my own experience.

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candid CH.com Newbie Offline I Love CH.com! Posts: 16	Re: MERRY CHRISTMAS OUCH Reply #9 - Jan 16^th, 2010 at 11:41am do you suffer from both trigeminal neuralgia and cluster headaches on the same side? if so.. how do you differentiate between the two?
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kellybell73 CH.com Newbie Offline I Love CH.com! Posts: 14	Re: MERRY CHRISTMAS OUCH Reply #10 - Jan 17^th, 2010 at 6:57pm The cluster headaches and TGN are on the same side. I can tell because the TGN is very sensitive to wind , fans, touch, my hair . The cluster headaches just come from nowhere at regular intervals ...like an alarm clock. Generally when I am sleeping at night or napping or at between 2-4 in th afternoon. Kel
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