MikeS
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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
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The other side of Opiate/Methadone Therapy (Read 6130 times)
