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.

Sorry we all missed you... I hope you remained on o2 long enough to send the beast packin'..

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?

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.

Look into Zomig.

Don

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.  ;)

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

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??

The trileptal and verapamil combo kept me almost pain free ( no 5's ;) 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. :)

do you suffer from both trigeminal neuralgia and cluster headaches on the same side?
if so.. how do you differentiate between the two?

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