Hi, I have posted a couple of times on a prednisone thread, but wanted to formally introduce myself. My name is Tate and I am a 39 year old wife and mother of two crazy cute red headed twin three year old wild men. I live in New York City and have have had cluster headaches since the age of 20.

I was in college when I experienced my first cycle and went undiagnosed until 1998 when a dr in Houston finally connected the fact that my headaches were waking me up and repeating and said those words...cluster headaches. I had seen numerous drs by that point and been in countless ER's. I dont know how many cat scans, MRI's, spinal taps, I had..."tension headaches," "female related headaches," who knows what...

I had one dr tell me after trying Zomig, Amerge and Maxalt?? that it was was hopeless for me. That was a great day. I tried Imitrex pill and the nasal version, I spent my honeymoon in the room or stuck not being able to get back on the ship...countless flights banging the back of some stranger's seat, roadtrips begging my husband to drop me at the nearest emergency room, days begging my dr to just put me in a coma, as nothing provided relief. I always suffered multiple headaches both day and night. In the early years it was 3 weeks, then 6 then 8. My last cycle went 6 months.

The introduction of the imitrex injectible was a lifesaver and a curse. I could abort the headache and find relief, but the number of headaches I have without imitrex is already high, and add the shots and I am rebound and cluster crazy. I am in constant pain.

Verapamil and every other preventative I tried never worked for me.

So, when prednisone came my way and took away the headaches completely I found my escape. I found drs who would allow me to take it throughout my entire cycle. And I did. I would get one  or two headaches...take the prednisone, stay on it two months and when I would taper off the cycle would be over. Cake.

Until my last cycle. We had purchased a textile mill in Italy and were living there for the summer. Chance of a lifetime sort of circumstance...we arrived and I got a headache. I took the prednisone and the headaches went away. Normally, I would never consume any alcohol during a cycle, but I was feeling fine with the steroids masking the pain and we were in such a beautiful setting....so, I drank for the entire time I was taking the prednisone. When I finished the medication I was in full raging headache cycle. The dr said the alcohol was not a factor, but I feel differently. I then tried going on a verapamil/topamax combo and back on the prednisone, but nothing worked and I continued to have the headaches at full strength and almost all the time for 4 more months. I was completely non functioning. I could not leave my bedroom. I had back to back headaches day and night. I would use the imitrex, but not for every headache because it just made things worse. It was not living. I told the dr that he made as well have told me that I was dying because that is what it felt like. I could not care for my children. As the months went on I felt certain that I was chronic and destined to a life of pain. Depression, despair, PAIN, feeling alone...awful.

Finally, miraculously....they subsided and I was released.

So, now I should get the headaches again within the next 6 months. I no longer drink alcohol at all, I have completely changed my diet (mostly for a secondary headache condition that I have) and I am changing doctors. I want to get set up with oxygen and am hopeful that it will work for me. I did try it without success in 1997, but with a regular mask, and I am hoping that with the right mask and proper instruction it will work.

Well, that's a lot of information! Is anyone still reading?? :)

So nice to meet everyone. Wishing that all are free from this terrible pain that we know all too well.

Tate! :) :) :)

  Oxygen will be your abortive of choice.  If ya got a couple bucks lease a welders tank,  buy an opti-mask here and a regulator from harbor freight.

       Potter

I'm with Potter. I went with a demand valve mask that lets me suck 02 as fast as I want. We've seen a direct relationship between flow rates and speed of aborts. People for whom oxygen didn't work at all at a flow of 15 LPM, found success at 25-45 LPM. Your mileage may vary! ;) The main key is getting pure, 100% 02 to your lungs, at  a rate to support hyper ventilation.

Have you checked out alternative treatments yet? Check out this site:

Clusterbusters.com

Lots of folks there that will answer questions for you. This treatment has helped many of our more severe cases when nothing else was helping. Worth a look see.

Joe

I trust you have a headache specialist in your camp, especially living in NYC that should be easy.

You didn't mention trying lithium. If not, talk to the doc.

Also, before you start thinking about surgery, time for a full review of you medice approach. A new doc (or consult with a new one) may bring a fresh pair of eyes to the situation.

An effective abortive for a number of us below. You will know with a very few trials whether it works for you.
------
Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.

Rozen TD.

Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

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Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
=====
Since this abstract was first posted Zyprexa has appeared in some lists of recommended meds for CH. [BJ]

Welcome to our dysfunctional little family Tate,

Good luck with the Oxygen, it has been my abortive of choice for years. I too utilize a demand valve and high flow. I haven't touched the trex in years, thank God. I wish you equal luck.

Great information on this site, and even finer members.

Baer

Hello
Im sorry your having such a bad time. I live in NYC i sent you a p.m.
Anthony

Thank you all so much for the welcome and the messages sent. I appreciate it!

I am currently a patient of Dr. Mark Green who I do like, but am scheduled to see Dr. Lawrence Newman on the 29th. I think a fresh approach is what I need.

I have never tried lithium nor zyprexa. Will ask about the zyprexa, as what am I to do when I am out without an oxygen tank? (this is hopeful and wishful thinking that I will be out during a cycle...)

I live in NYC and do not travel by car as I walk everywhere. I also am most likely accompanied by two small kiddos. :)

Again, I really appreciate your responses and time. Thank you! There is so much life to live without these headaches. Wishing all of you the very best!! :) :) :)
Tate

Hi there sweety

So glad to meet you, and not because of the headache issue...I am also a mother of a small one, but hes 5, and now hes in kindergarten, but I actually had a episode so bad I couldnt drive him to school one day, that was really hard on me because it was the day I realized that it was affecting his life as well as mine....

I cant wait till my dr comes back from vacation so I can try the oxygen thing....Good luck to you and I have two shoulders -w-

Hi Virginia,

Thank you for your sweet message. So nice to meet you! I am here for you as well. It really is incredible to have support...people who truly understand.

Enjoy your little one! My guys are CRAZY!!  :D :D

Tate :) :) :)

Mine is toooooo hilarious...hes got that latin sense of humor like his dad and boy is he a wild child....goes 90 to nothing as we say in the south LOL...