There is a demon in my brain. uncontrollable, unstoppable, and it feels no pain because it is pain. I am rapidly running out of weapons to fight this thing. prednisone, verapamil, imitrex injections, zomig nasal spray, depakote, ocipital nerve block, indomethicin. All this and constant facial pain and daily attacks, thankfully the O2 clears them up, or at least makes it bearable until i can hit the tank again. I have been watching the forum for a month now since being diagnosed and consider myself lucky to have been diagnosed in only 3 months (tho i took 4 doctors and nearly being arrested in the ER). But know I'm having strange side effects- ringing ears, hearing loss lasting 2-4hours daily (and increasing in frequency) along with a strip of numbness across the top of my head. Today I am unable to get out of bed. no energy at all, blood pressure too low maybe? I tire of trying to figure out "why".

I would like to say hello to everyone, and say (don't think I have ever meant this more).....I FEEL YOUR PAIN! everyday around 2pm and 9pm....4 hours left.........not sure how much longer i can do this.

Peace, Love, and heres to the light at the end of the tunnel...whatever the hell waits for us there. >.< MKD >.<

thx Ray nice to meetcha.

yeah its been rough. I'm currently being treated at jefferson hospital headache center in philadelphia and feel confident I'm in good hands. My doc is a little worried about my hearing loss, and tells me while I obviously have cluster headaches mine are not "typical" and the main concern right now is breaking the cycle. I have MRI's and other tests lined up to really get a handle on this thing, in the mean time i just struggle to endure this.

Thanks for the reply. it felt good to just dump this stuff on the net knowing the people here will understand.
MKD

Welcome to the nut house brother and vent away. Everybody gets to wander into the hole you're in right now where it feels like you're getting your ass beat on all fronts. Just don't give up, attitude is your best weapon.

Only one suggestion, I use lithium as a prevent, many who had their butts kicked on all other fronts found some degree of success with lithium/verapamil combo as a prevent. Might be worth trying. Hoping you catch a break soon.

Guiseppi

yeah thx ray (and everyone else!)

I do believe infusions are next on the list. after more MRI's and an explanation of this hearing loss i'm experiencing..

MKD

And another thing i was curious about your hearing loss question, i get mass ear ringing when im in cluster period. I mean MASS ear ringing!! i ask my wife and kids if can they hear it too but they just look at me funny, my wife even said once it might be from the humm of the fridge, does anyone eles get serious ear ringing when in cycle or before a cluster, it seems to be a precurser for me. coach bill

Seems like your going through a hell of a time.  Try to tough it out til there is some kind of solution.  I'm headed to Jefferson in a few weeks.  I am in Philly not sure if you are from the area.  Feel free to hit me up with a PM if you want to talk.  I've felt the desperation that CH can bring as most of us have.  Just stick with us here.  Amazing the support you get here from people you don't even know

i never expected this kind of response..a couple of "hey newbie" posts yeah, but not this! i cant express how much you all have helped me throo this weekend. i'll try to reply to everyone here.
the doc adjusted my meds this weekend, and cuttin the depakote seems to have helped with the earinging and hearing loss. which started 5 days after i had an ocipital nerve block, and uped the depakote. I never had it b4 then, tho my CH effects my ear/jaw/teeth and not my eye or temple.

again thx to everyone!!!!! it is great to not feel so lost in the pain. I see the doc tomorrow. i can't thank you all enough for giving me refuge from the pain......i hope you all are doing well......MKD

That's awesome news!  Glad you've found a combination that works for you.  Thanks for getting back to us. 

-Dennis-

Welcome!  I hope that your good news continues!

Jeannie

Hi MKD,

Just saw your thread now, having not been around the boards much for the past couple of weeks.  I have been going to Jefferson Headache Center for the past 7 years for new  daily persistent headache (basically chronic migraine) and chronic CH.  The CH, I've had since 2003, but the NDPH I've had since 2001.  Who is your doc at JHC?  I actually work at the hospital as a nurse and went to school there as well.  A few of us Philly folks are planning a get together in mid-September if you might be interested.

I'm glad that you figured out the depakote was causing the problem and that you are doing much better now on the indomethacin!  I have not had much luck at all in managing my headaches, and recently had surgery (also at Jefferson) to implant a bilateral occipital and right supraorbital nerve stimulator implant.  Working well, but only to be used as a last resort when everything else has failed.  I was out of work for 2 months after it, and things still aren't exactly normal yet, but I am having success finally in reducing headache pain (not removing headache pain, but reducing definitely!) with the nerve stimulator.

So anyway - if you ever want to meet up or need a hand from someone in the Philly area with quite a lot of experience navigating the headache world here, please don't hesitate to drop me a PM!  There are a few of us in the area who would be happy to help if needed.

Take care!
Carrie

Hey MKD - glad the 02 is working.  Keep an eye on the Depakote - it often causes stomach problems too (many of the epilepsy meds do) - though often not enough to want to get off if it's helping!

Being that you're in Philly, if you ever feel like you've hit the end of the rope with your Doc, the Jefferson Headache Clinic is one of the better places in the country to seek treatment for your CH.

Wishing you PFDAN,

Laurie

my episodes of hearing loss and massive ear ringing stopped when i got off depakote. now i just have general tinnitus (with no explanation from the doc) along with all sorts of facial sensory oddities eg- cold sensitivity, slight hearing "stuffiness" and a slight numbness on my cluster side. I am certain that the worst of my ear ringing/hearing loss was caused by the depakote.

best of luck 2 ya...MKD (>_<)

hiya Lizzie2/Carrie

since infusions, the side of my face feels-weird.....no attacks (whew) and my neck hurts pretty bad. I saw Rachel. Yes i was taking an acid reducer along with the indomethicin.....it still messed me up. I'm back on it at a lower dose (50mg 3X daily).the idea being after infusions and another round of prednisone a lower dose of indo may be effective...if  attacks come back i'm goin on topomax which i read up on in the forum (and am not looking forward to) it sounds equally as bad as depakote was for me. *shrugs* we'll see i guess. My mood has turned pretty shitty since infusion, cause i feel like the pain is just below the surface, waiting to come back...nothing seems to be breaking my cycle..
as far as far as september...just PM me with any info.

my next appt at the headache center is 9/15/08...early in the morning.

MKD (>_<)