The Beast is back after a two year hiatus. I use Cardizem as my preventive and immitrex injectables as my abortive. 02 has not been effective for me. Most of the "traditional" preventive medications have not worked either.

Does anyone else use Cardizem? I first tried it two years ago and experienced the weakest cycle ever in 26 years of having these headaches. I have been in this cycle for two weeks and it isn't ramping up in the normal fashion. In fact, I have had 3 PF days now since getting two headaches  Thursday night back to back (knocks on wood)  :).

I don't recognize that medication by that name. I'm sure someone will come along who recognizes it. Have you read the oxygen link on the left? There are people it doesn't work for, but many who had it fail them had success when they changed HOW they used it. The critical points are pure oxygen, at a high flow rate, at LEAST 15 LPM, using a non re breather mask. For the oxygen to be effective your lungs must get only pure oxygen. Might be worth re visiting if you were using nasal canulas, low flow rates or re breather masks.

Either way glad you found us, hope we can help you.

Guiseppi

Greetings from California!
It sucks to come out of a remission and realize the beast hasn't forgotten about you, isn't it? I was in a four year remission until last fall. I'm sorry you're in pain.
No, I'm not familiar with that med, but curious about it. Are you sure you gave O2 a fair chance?? You need to hit it early, don't let the pain get too bad; Non-rebreather mask with a minimum of 15 lpm.

~Kris

cardizem is a calcium channel blocker.  my first neuro prescribed it for me , wasn't working but probably because i needed a higher dosage.  he wouldn't up  the dose ( i was only at 240)  switched neuros who put me on verapamil at 660-  did the trick.

welcome to the site.  Sorry your pain is back, but glad you are experiencing some relief.

kelly

I'm at 120 on the dosage. I was supposed to ramp up to 360 but my blood pressure is now 104-70 so my Doctor does not want me to go any higher pending my next visit (Thursday). Experienced my 4th PF day in a row yesterday and am not sure how to react. My HA's have always followed a very specific cycle. Two weeks in and I should be getting nailed right now as I build up to the peak (4th week usually). Is it the medicine or is the beast changing? I can't say. I do know that I used Cardizem last cycle (May 06) and it was less intense than any of the previous cycles (approx 12).

As for 02, it is probably something I should revisit. My main concern would be most of my HA's wake me up at night and are usually at max intensity for me (Kip 6-7-8) when I awake. Isn't it too late for 02 at that point?

I have used O2 when I'm into a full blown hit.  It just seemed to take a little longer for it to work.  But I was having issues rebounding from it and would be awake again in 2 hours, if that long.  But give it a try!

Hi Drew!  Definitely give the 02 another try, if you hit it at the very onset of an attack, it can knock the beast on its ass in a matter of minutes. You may want to try melatonin for those night hits, works for a lot of people here.

You're not too far from me- I'm down in Essex County and I'd be glad chat with a fellow VA clusterhead anytime.

Sorry you're getting hit, but you're definitely in the right place. Welcome  [smiley=wave.gif]

Jennifer wrote on Jun 2^nd, 2008 at 8:54pm:

Hi Drew!  Definitely give the 02 another try, if you hit it at the very onset of an attack, it can knock the beast on its ass in a matter of minutes. You may want to try melatonin for those night hits, works for a lot of people here. You're not too far from me- I'm down in Essex County and I'd be glad chat with a fellow VA clusterhead anytime. Sorry you're getting hit, but you're definitely in the right place. Welcome  [smiley=wave.gif]

Thanks for the kind words. I plan to try O2 again. I am meeting with my Doc Thursday and I will get him to write the prescription for me---if the beast is still hanging around. As of today, I have had no headaches since Thursday night (knocks on wood). Two weeks and done is unheard of in my dealings with the Beast but I am surely not going to complain. I'm still shadowing a bit but nothing major. My wife is supposed to pick me up some melatonin today so I plan on giving that a try as well.

I go through Essex all the timeduring the Summer. We have a place on the Bay down on the Northern Neck near Burgess.

:)

So much for that. Getting hit with a Kip 5 or so right now. Damn it. Daytime HA is very unusual for me.

Hi Drew,  

What part of VA are you from?   Richmond here.

Curious who your doctor is, I am always picking brains when it comes to doctors in the area.  
Anyway very sorry to hear you are hurting and hope your appt. goes well.  Sounds like you have gotten some good advice already, def. give the o2 a try.
Hope you are feeling better very soon!

wrote on Jun 3^rd, 2008 at 3:26pm:

Hi Drew,   What part of VA are you from?   Richmond here. Curious who your doctor is, I am always picking brains when it comes to doctors in the area.   Anyway very sorry to hear you are hurting and hope your appt. goes well.  Sounds like you have gotten some good advice already, def. give the o2 a try. Hope you are feeling better very soon!

Hi Beachmusic,

I'm just west of you (40 miles) in Louisa County. I am currently seeing my PCP in Charlottesville. He is a young guy and what I like about him is his willingness to listen and work with me on ideas I might have for my own treatment. He is easily the best Doctor I have worked with on these headaches. I knew I had found the right Doctor when I heard  him arguing with the Blue Cross rep over the denial of my immitrex, a battle we won two years ago but are now having to refight again as my company was sold and I have different RX provider now.

I have seen numerous Doctors in Charlottesville, including neurologists. I have been to both Hospitals (UVA Medical Center and Martha Jefferson) and I am now contemplating going to see a Pain Management Specialist. I was misdiagnosed for 12 years (a recurring theme here it seems).

Anyway, to make a long story short, until the past two years I have been unimpressed with the care I found locally.

I can totally relate to feeling dissastified with your treatment.  It seems to be a common problem and I guess it takes most of us a long time to find a doctor we like much less get proper dx.  UVA/Charlottesville is a great area and I am glad you have someone you like and trust so much. :)

I had what I felt was the absolute worst neurologist here and had to deal with him for much longer than I can bare to think about!(years).    [smiley=finger.gif]

After waiting what I think was about 4 months I finally saw a new neurologist at MCV last week that I loved!!! Got this doctor's name via a recommendation from one of the many nice folks here on this board.  [smiley=hug.gif]  TY TY TY!!!!
The doctor even gave me his freaking cell phone ;) :o and actually answered the darn thing when I called him at 7:55 am a few days later.

Anyway,  I think I found a keeper!
Fingers crossed here that I am in remission.  And hopefully I will like him just as much if and when the beast returns!  [smiley=thumb.gif]

Good luck to you!!!

Not to hijack your thread Drew, but Mary Ann, who did you see?  Drew there is a really cool neuro in Rich, Dr. Michael Mareska who was very open and seemed very proactive when it came to clusters. I also saw the nurse practicioner, Kara Clark at Neurological Assoc. She too was really open to listening, being proactive, both seemed pretty knowledgeable and supportive re: CH.
PM me if you want the numbers.

edit cuz I suck with names. sorry 'bout that ;)

Jen, I "was" seeing Dr. Stacy Epps and also one of his nurse practioners, Shelly Smith.  Unfortunatly is was NOT a place I would recommend to anyone!!!   Perfect example~~~ he has 1 week wait for new patient appointment but if you are an existing patient there is a 3 month minimun wait, no matter what the emergency may be.
Return phone calls, even from a scheduler can take up to 72 hours.  If this is the norm, then I must have zero patience.  

Any doctor that wants to give me his cell phone and email sparks my interest in a NY minute  :)  and trust me I would never abuse it!!!

The new doctor is Dr. John Beckenstein at VCU

Mary Ann

wrote on Jun 3^rd, 2008 at 6:38pm:

Jen, I "was" seeing Dr. Stacy Epps and also one of his nurse practioners, Shelly Smith.  Unfortunatly is was NOT a place I would recommend to anyone!!!   Perfect example~~~ he has 1 week wait for new patient appointment but if you are an existing patient there is a 3 month minimun wait, no matter what the emergency may be. Return phone calls, even from a scheduler can take up to 72 hours.  If this is the norm, then I must have zero patience.   Mary Ann

You can see the money trail.  The bucks are in the intake process for new patients, tests, extended office visit, etc.  A follow up less money.

John