as i scroll thru the posts i can see so many others are just as lost with this condition as i am , some even more.i started having CA around the age of 21 and im 26 now. my first cycle scared me to the point i thought i was dying. luckily my personal doc works at the hospital and he was there the next morning after being admitted because the oxycodone/verapamil combo wasnt helping along with every other treatment he tried. they decided to keep me for 6 days and put me on iv dilaudid,6mg per 3 hrs for all 6 days in hopes of breaking the cycle.i left 6 days later doing not much better so my doctor decided to try methadone along with dilaudid. i eventually got to 60mgs of methadone and 6mgs of dilaudid as needed. the only difference made was by the methadone.i didnt have to take it but twice a day and it helped,for a while. now ive been thru propranylol,tegretol,depakote,verapamil,topomax,imitrex,
ergotamine,the list goes on. the only thing that has aborted a cluster temporarily is iv dilaudid but that wouldnt break the cycle,next best thing is methadone. when im in pain and rocking back and forth in tears i ussually get the "what the hell is your problem go lay down" kinda remark. at first the clusters were spaced out, now its chronic. i get somtimes 4 attacks a day, at least 15-25 days a month. im completely lost in this. i hate the methadone but it helps some. i still have a hard time telling myself to keep going. having people understand as they do on this website helps as well. i just wanted to share a bit of my story and say thanks to all of the people that contribute to this website,your work doesnt go unnoticed.

Oxygen should and will be your first line abortive.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

       Potter

With such a complex, difficult experience I hope that you are seeing a headache specialist. So many docs, even neurologists, lack training and experience in treating complex headache syndromes.
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LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.


2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
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Suggest you print out the following and give to your doc. As it says, many serious disorders are Cluster-mimics--appearing to be Cluster but something quite different. Here is where skilled diagnostic work is reuired.


Link to: cluster-LIKE headache.


Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

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Understand that with such complexity that your picture presents we are totally beyond our knowledge/skills to offer you anything by way of treatment. Personally, with such a history I'd regard it as unethical to offer any treatment ideas which would encourage you to not put your full attention into working with your docs.

I mean no dis-respect to your doctor, but using narcotics as a primary treatment for CH is a recipe for a horrific disaster. We have far too many horror stories from members of this board who have suffered thru narcotic withdrawals.....while also dealing with CH.

CH is most often a lifetime affliction. Knowing that, it's critical at the earliest possible point to locate and work with a Headache Specialist Neurologist, preferably one experienced in the treatment of CH. GP's and most garden variety neurologists do not have the experience or knowledge base to effectively treat CH. As a result, we tend to see a shotgun approach of trying numerous meds, at incorrect dosings and with unrealistic expectations.

I understand the fear of a pending CH attack. I know that panic that tells you "I'll take anything, do anything, damn the consequences I WILL NOT suffer thru another attack." We've all been there done that, no one here will tell you to relax it's just a headache get over it.

That being said, it's time to look at your quality of life, the extreme dangers of your present treatment, recognize the need to stop looking at your treatments as a "one attack at a time" procedure, and take control of the beast.

Read the link Potter sent you. It's the first step in controlling the beast. My aborts run 6-8 minutes with oxygen. That's 6-8 minutes from that tingly. "oh shit here it comes feeling", to being completely pain free. Once you have the ability to slay the beast that quickly, it makes it much easier to slowly and methodically work through the various preventative regimens available to you, knowing if they fail you're only a few minutes away from pain relief.

One other website for now:

Clusterbusters.com

Our sister site, dealing with alternative treatments. Lots of success over there too. Welcome home, start reading like crazy, knowledge is your best ally against the beast.

Joe

yes i definately understand that opiates are a no-no when it comes to CH.my doc has even stated this but this treatment is the smallest bit of relief i can obtain at this point since i have no insurance and am currently unemployed bc of the clusters.ive tried oxygen, over and over and over and ive never had results. this was using the mask at a pretty high rate of flow. there was a point where i forced myself off of methadone. i figured id give it a fresh start and after 6 months of tapering down and 1 month of being seriously ill i was off of opiates completely. i guess the impatient part of me took over and i went back to the methadone bc the other treatments were not helping. the scariest part of this is my blood pressure in the middle of an attack, up to 190/130. thanks for all of the comments and links especially im going to try to find a specialist and just hope i can afford to get started.i owe my doctor over 3 grand right now and cant make big payments so its nice to have his support. its even better for him to admit that he doesnt have the experience to treat me as well as specialists could. thanks again for the comments it means alot.

Quote:

ive tried oxygen, over and over and over and ive never had results. this was using the mask at a pretty high rate of flow.

What kind of mask and what specific flow rate?

It NEEDS to be a non-rebreather mask that allows you to breathe in NOTHING BUT PURE OXYGEN at a rate that supports hyperventilation (25 liters per minute minimum).

Telling this group that you've tried oxygen and that it doesn't work won't cut it. You have to have tried it PROPERLY.

Brew's right. We're not trying to minimize your experience, but we lack confidence in a doc who prescribes long term methods that are demonstrably less effective. I would say the same thing about the "traditional" meds you list, like verapamil and imitrex. For example, was that an imitrex tab or injection? Pills take too long to work for us. How high was the verapamil? We are so off label when it comes to dose levels. Normally verapamil is prescribed up to 240mg. I take 640mg/day. Some over 900mg/day. See what I mean? There may yet be hope in the classic treatments for you. Tell us more. God bless. lance

Hi big jake,
I agree with what the others said. It seems to me you're not getting the right treatment. I was on verapamil 720mg + lithium 900mg + Zomig nasal spray for aborts. That level of meds was allowing me to (more or less) function in society and letting me sleep most nights. But lower verapamil and back comes the beast. You need a headache specialist who has latest info on CH.
I personnally now have quit all these meds and busted the cycle with RC seeds. I'm back to being a normal human being. I couldn't cope with the side effects anymore, and I'm now a START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE advocater: I strongly believe the solution is there, but if you want to stick to official meds, you have to have proper meds & dosage.
:-) oh and yes... oxygen, I never got to try it but according to all that I have read here and on CB.com, it DOES work very well, keep trying and reading. I spent 27 years without any meds at all and my tricks were: Ice, coffee (aborters), and knowing at what point to withdraw from the outside world. Energy drinks are good aborters but I rather strong coffees., myself. Sleeping being a trigger for me, I tend to avoid this part of life when on cycle. I discovered in this past cycle (being unemployed this time) that I can sleep 3-4 hours in the afternoon, but never at night.
Hang on and keep fighting, and read, read, read these boards !!!, I spent 3-4 weeks doing that intensively and there is a lot of info. Just a glance at it is not enough. Do ask, people are here to support one another. People on this board know more about CH than many Dr.

One more vote for oxygen. Most of us will not believe it doesn't work for you till we have actually administered it correctly ourselves and seen it not work. That is how often people get it wrong... and how passionate we are about how well it works when done correctly. Oxygen not only has the highest success rate of all aborts out there, but also has no side effects, works almost instantly, and referred to by most of us as a major game changer... as for me, it saved my life. Read up and try again, sounds like you really need this particular type of control right now.

thanks so much for the replies. i have an appt. scheduled and while im there im going to get the list of meds that have been tried and see how much ive taken of each med,how long etc.. it gets confusing after a while as i have bipolar disorder and some of these drugs dont sit to well with my body to begin with but anything is better than living like this. as far as oxygen, i remember being told i was at 25L/min and evidently thats pretty low from what im hearing now. in this particular instance they had me on the oxygen for 30 mins before they stopped and knocked me out and as far as the mask i cant remember to save my life what type.i ask for oxygen everytime i go in the ER in hopes that it will work but having it at the beggining of an attack would def. help.im going to talk to my doc about this and see if its an option i can even afford bc im willing to try anything.he honestly doesnt like me on methadone bc he knows opiates arent the answer for this but i will say that the fact that it has a long half life is the only reason he chose that,to prevent rebounds.he basically told me that the best he can do is what he is doing and that i need to see a specialist and the money issue has hindered that. ive had imitrex injections in the ER but it was way too late by the time they administered it.they just end up coming in 30 mins later and putting me out with dilaudid for the pain as well as to lower my blood pressure because it gets really high during these attacks. my best friend in this battle has been decadron. with me being bipolar it throws me into a wild manic state but damn it really does help,too bad its just a short term treatment. im being thrown curveballs lately as my clusters have switched sides and that hasnt ever happened in years. the pain is much more intense in these past months since the side switch as well as the timing of the clusters. every morning at 4am i wake up to it,then ussually two more at least within an hour of the day before. i really hope i can afford oxygen but at this point i doubt it. its taken a long time for me to understand that this probably isnt going to ever go away,and coming to that realization is hard as most of you know.ill post back with more info after my appt when i can tell you more and im going to keep reading the boards. your responses are much appreciated