I have suffered CH for almost 20 years now. I have been Chronic for
almost 15 years. Unmedicated each CH attack came on very very quickly.
Each lasting almost 3 hours always an attack while asleep and almost
always 3 others each one starting the same time each day. If I was doing
something highly physical during the time I would normally get an attack it
may be delayed up to an hour or if I was relaxing It could come 30-40
minutes earlier.
    At first I thought I was nuts having such a thing happen the same time
each day (I hadn't heard of a Cluster headache) I would pull my glasses of
press my left eye very hard (It felt like it was going to push right out my
head) drop to my knees rock back and forth a minute or 2, then try and
find something near the ground to press the right side of my head against
to try and even out the pressure and pain. I would end up in the fetal
position rocking, squirming and moaning.This happened whether I was in a
store, or I pulled my car over and climbed out the pass side. I have
suffered migraine some since a Teen which are completely different a CH.
However they became more frequent and painful since I went Chronic.
     I was 38 years old had 7 children who just couldn't bear to see it
happen. Of course I had been to the ER often and my General Dr. Did what
he could. One day I read about clusters in the Library and the hope began.
    After the third Neuro I was in luck. This Neuro during 10 years of my
CH was a very organized and methodical Dr. He took the time to explain
each treatment and not only wrote exactly each Appt but also voice
recorded and transcribed each Appt. We started out with Calc. channel
blockers, Sansert, Anti seizure meds, Lithium, Prednisone for short bursts,
O2, IV DHE, Trigger point injections of Local lidocaine which my wife
learned to do. Monthly steroids in the trigger points from the Dr., , Zornif
Topomax and many others. Side effects were many and some were serious.
After several years of use I became allergic to promethazine and
compazine. (I got something called  Tonic Dyskinesia (spelling is wrong)
and was in the hospital for a week and I have no memory of anything past
the time I was admitted).
    The above meds did help quit a bit. I could get through most nights
without an attack and at my best I would get maybe 16 Attacks a week.
The common problem was that I became resistant to the meds that did help
even after titrating me to the max dose my Neuro would do.
     After a  4 week inpatient stay at Diamond Headache clinic they told me
that the best I could hope for was maybe a 50% reduction in attacks. They
said that even though Clusters & Migraines have little in common they were
somehow indirectly feeding off each other making it extremely difficult
to come up with a decent way to help me.
    Ok now to the opiate treatments. Because my Neuro was such a
perfectionist with my records he definitely saw a pattern that clearly
showed a Decent response to opiates and even more so Methadone. At
Diamond they would give me a Doliphin injection which really helped with
my attacks. After the 2nd week I found out that dolaphine was a different
name for methadone.
    I was now ready to try surgery to freeze a nerve (Trigeminal?) During
the first part of the surgery I was to receive stimulation of different
nerves or areas of nerves to pinpoint where to go. Upon being wheeled in
to the operating room I got a full blown Cluster. The surgeon that brought
me in had never actually seen a bad CH. Needless to say I couldn't
proceed with no way to trigger the nerve the way they wanted to. They did
however put me under for a short time just to get rid of the pain.
    This Surgeon was part of a pain clinic that did opiate/methadone
therapy. After getting my records (about a 4 inch stack) they thought that
because other methods had not been effective over a long period of time I
would make a good candidate for opiate or methadone therapy.
    By this time I had read so much against narcotics that I said "No way".
He asked me to bring my wife in to discuss my options. After a huge amount
of info on correctly prescribing and using opiates for long term pain and as
much research and reading I could find on the subject I decide to try it.
He explained that it would probably take 6-9 months before I could
expect any significant relief. He also explained that many people cannot
function or even live without taking certain meds (ie Diabetes) that even
though I would certainly have some withdrawal if I just stopped after long
term use, He asked does that seem worse then what you, your wife and
children go through each day.
    After 7 months of very very slowly titrating methadone to a certain
level, using morphine (also very slowly increasing dosage) for
breakthrough, over the next 4 months It happened! my CH attacks went
from at least 3 a day to sometimes less then 1 each day. Not only did the
frequency dramatically decrease, they would come on much slower, with
enough time to go home from work (I only live 5 minutes away) or drive
home several miles. After a year I could work maybe 20 hrs a week. I had to work at odd hours and only for 3-4 hours at a time and not every week. I do get a lot of  bad days where I miss work. If I get the flu or other
illness It sometimes messes up the number of attacks. I have to keep a
fairly strict schedule of sleeping starting my meds at 5 am and getting out
of bed and doing some light work for a couple hours.
    The unexpected for me was the very minimal side effects. I never felt
high because of the very gradual titrating of my meds. The biggest problem
I have is forgetting doses. They have weaned me off the meds twice and
within 2 weeks my attacks increased a lot. Over the last year I have
noticed the meds all of a sudden making me tired. I lowered the dose
slowly until I didn't feel tired and my results were great. I have actually
decreased my daily amount almost 40%. The Dr. thinks the
neurotransmitters involved are finding new pathways to go and that is why
some people eventually quit having clusters. As painfully long as this post is
there is a lot of details left out.
    Although most people wrote "thats great if it works for you". I feel like
there are at least some that may benefit from this treatment but like me
were afraid to try because of the many who have said "Opiates Never
Help, Don't even think about trying it". There were however 2 or 3 that
told  me " You,re a loser Junky Stay off our board" in personal Emails"
That was a long time ago and I don't see that they are even on the board
anymore. My sweet sweet wife and now 8 children have a blast together
and I am going to try Hockey again in the fall. Sorry for the length it
seemed the only way I could present this info.
          Thanks always MikeS

Glad you have your life back

WOW! Please don't apologize for the length of the post..a clearly well thought out and instense post. You've been down the "ugly road!" ;)

I am like most and have an immediate knee jerk reaction to opiates for pain treatment. Clearly, you started out with the same reaction, and fortunately, over came it. I hesitate to condemn any treatment out of hand. I'm one of those who is convinced CH is a number of different ailments, with subtly different causes, which explains to a degree why some treatments work so well for some, and are useless for others. Awful hard to argue with the logic in your treatment plan. Well thought out, meticulously administered and monitored, and most importantly, succesful!

I commend you for having the juevos to undergo it and couldn't be happier for you in regards to the results. To anyone else considering using opiates to treat CH, this gentleman has certainly set out a template for how one would go about it! I thank you for that. Wishng you continued success and hopefully a "forever remission" at the end of this cycle!

Joe

Thanks E-Double and Joe,
    I was uncertain whether to post this. You sure made me feel better about posting.  
    The 3 most difficult issues are:

   1) Most Important is finding a Dr. who has the training, experience and knowledge of how to do it properly. My Dr. is an anesthesiologist, runs a research clinic in pain management and monitors the proper use of meds as close as humanly possible. You have to bring any remaining meds to your next appt for several years. (They give you 15 days worth at first and reschedule back in 14) you need to have the extra days worth at least. He also does reflex and cognitive tests each month for a couple of years. For me I did better on both tests after 5 months then previously using less meds and having some residual pain. I would do the test an hour after a CH attack.
    2) Getting through the period when you have a very strong urge to use more meds then prescribed. I told him I was worried that I was becoming "Drug Seeking". He explained that if I were vigilant about keeping the doses proper and on time that when the dose was right I would lose the urge and probably start to forget to take doses occasionally. He explained that when your body knows something is working to reduce pain that you do get cravings similar to a drug abuser. However they will fade if you keep every on the exact schedule prescribed.
    3) Separating the side effects from the actual pain relief. If you feel calm or get a warm feeling or any euphoria after a dose these fade fairly quick. You have to honestly evaluate the level of actual pain. These warm or relaxed feelings make it easier to ignore the pain, however the actual amount of pain relief is based on the actual physical level of pain combined with showing better cognitive testing and quicker reflexes.  This is why they titrate the meds by such small amounts. It greatly reduces the warm euphoric feeling opiates can give, especially at first and greatly enhanced by increasing dosage to much to quick.
    They also occasionally draw blood 3 times a day an hour after each dose is given. This gives them a basis of your blood levels when are  taking the proper amounts of meds. You are required to submit to occasional blood tests if needed to verify proper use of meds. Anyone abusing meds will usually not last as a patient. They are not at all like "Gestapo Police" Trust is easily earned if a patient is honest.

        Thanks again for your comments MikeS
     

Personally I don't begrudge anyone who has truly run the gammit attempting to alleviate their pain and trying to gain a better quality of life.

It seems that you have done this and work with a reknowned team ( though one that many have had personal problems with).

Some choose meds, some choose alternatives, some choose to bare knuckle or just use an abortive.

I'm a 5 yr chronic and had my fill of meds almost 3yrs ago and decided to attempt it clean. Having finally gotten the approval and support of my spouse to let me try an "alternative" I soon realized that I was having an easier go with things and the attacks though still prevalent were fewer and less intense.
I remain med free and have a high quality of life enjoying a love affair with my E tank.

I guess, I will never judge anyone for trying to get rid of pain. I do have problems with people getting combative with eachother regarding both sides of the debate.

Is your method standard? No
Is it something that appears to have given YOU and YOUR family a better quality of life? YES

good luck and keep us posted.

E ²

I guess, I will never judge anyone for trying to get rid of pain. I do have problems with people getting combative with eachother regarding both sides of the debate.

Well put sir! ;)

Joe

E 2,  
    I am very happy that you enjoy a good quality Life! :)  Med Free, that is awesome.  Your success reminds me of the other half of my success. Without this other half the meds wouldn,t be successful. I assume that you, med free, will understand. It takes some serious mental work, discipline and attitude to be grateful for the good times and convince  ones self that life is good, even with pain. If I didn't use Biofeedback/Self Hypnosis (Both of these are first seemed mysterious and weird, they are just labels for using your mind to sort out and Minimize the effect pain has on you). The meds are just 1 part of the process I use to be able to work and spend time with my loved ones. It inspires me to work harder to improve my mental ability to endure this Disease.     Thanks Again MikeS

We have a simple saying on the board that encompasses most of that:

Live your life between the hits!

Joe

Mike,

What E² was able to accomplish using only oxygen therapy for his cluster headaches is not at all uncommon.  There are many of us who took a serious look at the risks associated with invasive cluster headache preventative and abortive medications as well as their side effects including opiates.  In many cases, we found they were not balanced by a commensurate reward of a measured reduction in the frequency or intensity of our attacks.  In short, the reward wasn't worth the risk.

The results of that risk vs reward analysis made our decision to detox from these invasive medications with their undesirable side effects in order to pursue a new method of oxygen therapy a safe and logical next step.

Discipline is the only real determinate for success once you have the right oxygen therapy equipment capable of delivering oxygen flow rates that support hyperventilation and some simple, easy to follow procedures in hand.  By discipline I mean you use this method of oxygen therapy on every attack or shadow as early as possible every time.

We've collected data on over 600 cluster headache aborts during a pilot study of oxygen therapy and the results are clear.  If used properly at the first sign of an attack at flow rates that support hyperventilation, oxygen therapy can be very effective with abort times equal to or less than aborts with imitrex injections, but with none of the risky side effects.

Average abort times and Kip-levels start dropping the first week of using this method of oxygen therapy and continue dropping through week 8 when they level off at a very manageable level.  The frequency of the attacks increases slightly through week 4 due to re-attacks then drops steadily through week 8 when they too level off.  There are a few medical conditions that can lower the effectiveness of this method of oxygen therapy.  Most of these involve a lowered serum pH so it's always best to work with your physician when starting this method of oxygen therapy or if you're having trouble aborting your attacks.

The most remarkable results of using this method of oxygen therapy are the confidence we all gain in being in being able to abort 99% of our attacks in such little time.  This puts us in control of the beast instead of the other way around and we encounter none of the risks associated with the other abortives or their side effects.  Most of all, we enjoy a greatly improved quality of life few of us thought possible.  

Yes... we still have cluster headaches and getting trapped away from the nearest oxygen cylinder can still be a problem. However, that's more a matter of proper planning and occasional overconfidence.  The rest of the time we not only live a good life between the hits and when they do occur, they're usually just a minor nuisance easily dispatched in 3 to 5 minutes using this method of oxygen therapy.  

As always, I've provided the above for information purposes only.  You need to discuss all this with your physician before attempting the course of action discussed above.  

Shoot me a PM if you're interested in more information.

Take care,

V/R, Batch

Thanks for posting this. My neuros have urged me towards methadone b/c it's safer without the tylenol in lortab, but I've been hesitant. I'm doing better now but it's nice to know that if they return with a vengeance I at least know of someone who I trust who'se successfully gone that route.

Katy


ps) for those of you who are new, this is an option you try when you're chronic, have exhausted all other options (legal or otherwise), have tried at least one drug in every class and have a damn good reason for ruling out the others, and you don't respond well to abortives like oxygen or triptans. That process takes a minimum of about 3 years of living in constant hell, this is NOT a first option.

Thanks Mike for a well thought out and delivered post.  I am one who decries Opiate usage for CH, but every other case that I have heard than yours has been one of just throwing the drugs at the sufferer to mask the pain without the care to minimize risk of addiction and abuse.  You have no idea how fortunate you are to have a Dr that actually practices medicine, not just prescribes medicine!  I'm one who was prescribed opiates when I was first diagnosed with CH, and it almost ruined my life, so you can understand my hesitancy when someone else brings it up.  Please keep us updated on your progress and any troubles you have with it.  I will be watching with interest.

Katy,  Thank you for your addition!  As Mike was sharing opiates should not be a first line of defense.  

Wishing you PFDAN's
Jerry

I tried Methodone for well over a year after trying all the above mentioned prevenatives and nothing worked for me either.  I got 8 ch a day each 1 1/2 hrs long and I was chronic.  My life was hell, actually I had no life and actually went to my Pastor to talk about my strong desires to end my life since I had no qualilty of life to speak of.  The methadone stopped my ch but I slept for 15 hours a day and was just out of it.  Not much of a trade off.  Except the few hours I was up it was quality time with my family.  I then went off the methadone and on to the fentanyl patch.  I have been pain free for 8 years now.  I started at 50 mcg and never needed an increase in my doseage until I had bad disk problems in my lower back.  Instead of surgery they upped my pain patch to 100 mcg. Now on 6/30 I am having outpatient back surgery and am having the nerves to a couple of disks numbed and burned so I should have a pain free back for a year if this works.  So I should be able to lower my pain patch back down to 50mcg!  It has litterally given me 8 years of living and my life back.  I know it isn't for everyone but it sure has done wonders for me also.  

Wow this is a really moving post for me! First I applaud the brave CH er who began this and then I applaud all the others who answered. Now I am facing this option as well. I have been in constant and unrelenting pain from CH, migraine, Trigeminal neuralgia and chronic persistent daily headache for 10 years. Nothing, absolutely nothing helps but the narcotics. I am HIGHLY allergic to aspirin and ibuprophen so I simply cannot go that way. I have been labeled drug seeking and gone thru the route of many specialists such as neuros, psychologists, psychiatrists, regular mds and such. Now I have a very caring doctor who is admitting me to the hospital for tests for a week and if nothing else helps (I am assuming this will take up to a year for her and the professor of Neurology at the university for doctors in the country I live in to decide on) then I will be going the narcotic route myself. I have lost family (nearly all!) friends, husbands (2 divorces) and much sanity over this pain. I am going to lose my new boyfriend if this doesnt get under control soon. I am SUPER AFRAID I will take my own life during an attack. (I have a history of trying stupid things like that during a kip 10) I am hoping I have the same sucess with the tests and treatments and possibly the narcotics that others have had. Life in pain is not worth living in my opinion. Living life between attacks is not possible for me since something is always flared up and triggering another with me. I have had to learn to try and live during the pain.
I think what I want to say with all my rambling is that THANK YOU  for giving me and others like me some hope. Hope is priceless at times like these. I am SO VERY HAPPY FOR YOU that you have found a way to live with your limits! You and others like you are an inspiration.

Big hugs from Sophia :)