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 >.<

Dear MkeithD:

It sounds like you're having a rough time.  Probably all of us have been in a place like you are now.  You have one tool, Oxygen, that seems to be helpful.  That's a start!

You may wish to visit a specialist who understands the headaches.  For a list of sufferer recommended doctors, try the following link from OUCH.

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Would you please provide a little more information about what testing has been done to provide you a diagnosis of CH?

Some of the symptoms you've described might indicate another problem in addition to CH.

Wishing you well,

Ray

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

We certainly do understand.  I'm sorry the beast is giving you such a bad time.  I've heard good things about Jefferson.  Just stick with it.  They'll figure out something that'll work for you.  Just don't be shy about being in their face until they do.  

Hang tough brother.  And thanks for checking in.

-Dennis-

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

Jefferson Hospital has a good reputation.  They should work with you to find a solution.  You might consider the DHE infusions to break your cycle, assuming that you don't have any heart conditions that might make that risky.

Wishing you well,

Ray

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

whats up mkd, coach bill from cleveland here. just wanna wish you best in your battle right now. coach bill

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

hi

i am so sorry to hear of the hell that you are going through.
i was just at my MD's the other day and he asked me about the ringing in the ears and hearing loss thing, which i don't have, but i got the impression he was going somewhere with the questions. anyone know more about these symptoms and CH?

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'm so sorry that the beast is giving you dreadful time right now.

Wishing you lots of PF days,

Sanna

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

IT WAS THE DEPAKOTE!!

I'm off depakote, no more ear ringing or numbness! at the full dose of indomethicin.............NO ATTACKS SINCE MY LAST POST!!!!!!!

other meds still giving me side fx, but i look at pain completely different now. hahaha.

Getting back to normal? dare i hope?

feelin OK for now, MKD....thx again all of you!

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

-Dennis-

thank you thank you, yes it is good! and i'm not goin anywhere. still got my eyes on the forums. just took a week off to get outside....and just hang around enjoying not living in fear of pain ;)

Welcome!  I hope that your good news continues!

Jeannie

Thanks Jeannie! you are not the only one. Believe me! Its been a fairly insane 3 months. I've learned a lot about myself. and hope to be of some help to others, now that i have a grip on this.  

MKD

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 lizzie2,

i had to take some time away from forums for a bit my self. indomethicin was causin me stomach problems so i had to ween off.....BAM...attacks the very next day :( back onto a pred taper and i just finished 3 days of infusions*fingers crossed, yet again*

sounds like you've been throo the ringer quite a few times and i would not be opposed to getting together to swap stories for some perspective if nothing else. let me know what i need to do in order to meet with everyone in september.

may the pain overlook us all today. MKD

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

coach_bill wrote on Jun 28^th, 2008 at 8:42pm:

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

I get that too. I believe it is from the pressure build up. Maybe a SE???

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 (>_<)

Hi MKD,

So how is it going since the infusions?  Did you see Rachel, the nurse practitioner, or Jen?  I know both of them, but routinely see Rachel for the past few years - she has  been such a huge help.  Both of the nurse practitioners have been amazing helps really over the years I've been going there!

Did they attempt to give you anything for your stomach to take while on the indomethacin?  Are you on anything for reflux?  I know some meds that are similar to indomethacin are so caustic to the stomach that they are automatically combined with something to protect the stomach, too.  If the indomethacin was working so well, instead of giving up on it, you might try asking them about taking something to protect the stomach...  Sorry if this has already been addressed!

As for the get-together in September - it is still a possibility, but we won't know if it is happening for sure until I hear from another CH'er in the area.  I don't want to really post info about the get-together yet since I'm not the one really organizing it, and I'm waiting to hear if we will still be able to have it!  I live in Narberth (well, for the next month anyway), so I'm just 25 minutes from the city.

When are you next going to the headache center?  Maybe I could meet up with you on your next trip down to Jefferson.  Let me know!

PF Wishes!
Carrie :)

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 (>_<)

i give up.
i'm ready to flush all my meds and cancel all of my appointments
i fucking hate this
i give up. :D ;D :o :-/

dont give up, MKD!!! you gta just show that [smiley=bigtiny.gif] $%^&*((&&^^ beast who's boss!!!  U WILL GET THU THIS, though difficult to do, keep the "positive outlook"! Sending you lotsa hugs and good vibes from Long Island!!!
deb [smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif]

:(
thx, just feel weak, tired and pissed today.
everything hurts. side FX from meds. hit the end of my cycle (4 months) and instead of shutting off. the fucking pain switched sides! *whines*
got the blues bad today.

i have no choice but to endure...but i'm so very tired of this shit. as you can imagine......thx again.

MKD>.<

hey all, its been a bit since my last post and im havin some trouble keepin track of things at this point. i think last time i posted was my 4 month mark when then headaches switched from the right side of my head to the left.this past weekend my normal everyday pain (i have constant pain inbetween attacks-which will probably explain my constant irritability) started to flip-flop from one side to the other. I saw the doc on tuesday and got 10 shots in the head (nerve blocks, ocipital and trigeminal, left and right sides)

my current littany of meds are- verapamil 480mg daily- indomethacin 75mg daily- topamax 50mg daily.....my ears ring constantly, my eyes are fukt up (like looking at the sun or a bright light? when you close them?) i see everything like that all the time, afterimages. my stomach is constantly sour. i was taking melatonin 9mg daily also but it was messing up my sleep and giving me terrible nightmares...all this and a constant headache (3-5 on the normal pain scale). no full blown attack in about 2 months tho...( a couple of mini attacks but i got my 02).

anyway. i saw the doc tuesday. got a mess of nerve blocks. on thursday. my normal pain began to increase. i felt an attack threatening me....pain levels rising, bringing me to tears as i ran for the 02......IT SWITCHED SIDES IN MID ATTACK. then back again. i hit the tank for 10 minutes or so (it still wasn't a full blown attack-but they still fuckin hurt none the less). 2 hours later the same thing. this all started at my normal cluster time, 2pm. exhausted i crashed. slept 2 hours.

when i woke up........my baseline cluster pain WAS ON BOTH SIDES OF MY HEAD AT THE SAME TIME!!!!!! oh and my cheek now tingles..i am literally at the end of my rope. i have no more faith in my doctors or meds. i have had to drop out of school this semester and i fear that i'm going to loose my job......if that happens i'll be out of options, i'm lucky to have the job i do (i've been able to work from home once the whole cluster fuck thing started).....if it wasn't for my wife and lil girl i think i would turn on my 02 tank and light a final smoke...for tonight the wife is working and the lil one is off at granmom and granpop's..........and i'm gettin loaded. i thought the longer this went on the easier it would be to deal with....i'm now finding it to be quite the opposite.....

fuck me........i sure hope the rest of CH sufferers are faring better then i am

Dig in and kick that demons ass. Wished I could help more. You can do this, my friend. Hang tough.
the bb

check your pm's 8-)

Hey Keith... Sorry the battle is still raging.  Like thebbz said though, you have to dig deep and find the strength to fight on.  Just think of your kid and how it'd be growing up without you.  Do it for him if for nothing else.

Get back with your Dr and tell them that what you're doing isn't working.  See if they think some of the symptoms are drug related.  It sure sounds like things are getting a bit unstable.  But who knows man, everyone's CH is different.

Have you ever been through something like this before?

At this point the drug levels look low enough but you're obviously not getting any relief from them either.  Something needs to change.  

If they draw a blank then it might be time to consider new Doctors.  Don't except things the way they are.  

Good luck...

-Dennis-

check your voicemail dude

thx. ive been away from the forums while i bully my docs into helping me. (spreading the pain around) now pain is at a low level, more like discomfort. but the combo of lithium/verapamil/topamax has me essentially retarded. topamax is like a permanant acid trip, extreme spatial distortions head and hands feel huge etc. which would be cool every now and then but not every day. lol. I'll take that over attacks anyday. just cant drive anymore *shrugs*giggles*

thx 4 the support sorry no reply for months but i needed to regroup ya know? and after that last post i promised myself i wouldnt post again until i had some good news dammit!!
MKD

That's awesome news, anyone kicks his ass we all win a little bit. Lithium has been my silver bullet for I think over 20 years now. (WOW!) I'm episodic and at 1200 mg a day it blocks 70-80%. Hoping your good ride lasts a bit, you were getting beaten down pretty bad there. Wishing you all the best.

Joe

Thx Joe. Topamax is the silver bullet for me tho. once i got to 100mg the side FX got really strange but it killed 90% of the pain. lithium (@600) just finished it off. verapamil @ 480. thats my cocktail apparently. now if i have any discomfort (2pm & 9pm) the side FX from the topamax kick in. (extreme weirdness!!) then 10 minutes later....i'm cool. i just hope i can stay on all this stuff long term. docs tried takin me off verapamil and pain started comin back in about a week. so im back on every thing. I told em dont mess wit the mix! finally somethins working.

thx again..stay the course..MKD