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Topic: Narcotics Cause Episodic -> Chronic? (Read 4235 times) |
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Crappy
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Narcotics Cause Episodic -> Chronic?
« on: Dec 18th, 2007, 4:13am » |
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I’d like to invite anyone chronics with personal experience, or any medical professionals to comment on what I found cited in the following sources, which state that “Narcotics may expedite transformation of episodic cluster to chronic cluster.”
- http://www.emedicinehealth.com/cluster_headache_faqs/page8_em.htm (search for the second use of the word “narcotic” near the bottom)
- http://books.google.com/books?id=WSUMZ5ECEbMC&pg=PA520&lpg=PA520 &dq=narcotics+may+expedite+transformation+of+episodic+cluster+to+chronic+cluster&source=web&ots=o2KoDIpSc9&sig=sUrsyP7sUoinDNlGWTMrCcAY8bI
In my first newbie post, I made the statement that my episodic cluster headaches were transformed into chronic daily cluster headaches because I was prescribed narcotics for 2 years. Based on that, I said that if I had been diagnosed sooner, I might have been spared the pain of my current condition. A veteran of the boards jumped in and disagreed that narcotics can cause an episodic to go chronic, but said that narcotics aren’t useful for clusters because they act to slowly anyway.
In my defense, I was only diagnosed with CH 10 days before, so my wife and I have been feverishly researching the condition online, and she found the statement on eMedicine.com's Cluster Headache article: "Narcotics may expedite transformation of episodic cluster to chronic cluster." I've learned quickly that there is alot of misinformation about CH out there, so I now take everything I read, even in the medical literature, with a grain of salt.
I've suffered from undiagnosed headaches for 8 years, and was on narcotics for the past 2 years, during which time I went from episodic headaches to chronic debilitating headaches, ending in not being able to work for the past 5 months. We finally went to Mayo in Scottsdale on our own dime, and $25,000 later, after even their doctors told me there was nothing wrong, I got a diagnosis from a headache fellow in neurology. So when my wife saw that statement, it made complete sense to her, since everything seemed to go downhill in our lives once I started the narcotics, even though they were supposed to help with the pain. However, I'm a scientist myself, so I know that these things aren't as simple as they seem.
After a couple of months using just Vicodin, my pain doctor started me on morphine sulfate extended release, plus Vicodin for breakthrough pain. That worked for awhile, but the BEAST was better, and each time he upped the dosages the headaches just got worse and more frequent. Over the course of two years the doc just gave me better narcotics, and the headaches just came on stronger and more frequently. They would always subside for awhile seemingly – at least during the day, but stronger at night. I didn’t care so much about the night time headaches, because I was doing better at work, so I made due with less sleep and worked harder during the day. By the end of it, I was a fatigued zombie with zero energy who could hardly work, with a succesful business on the brink of collapse, a wife saying I wasn't the person she married, and headaches that hit me many times a day for hours at a time.
So I don't know if narcotics expedite the transformation of episodic to chronic, but I know that from the time I started seeing the pain specialist, and began taking the prescriptions of narcotics, I started a slow losing battle. My pain would go away for days or weeks or months, then the doc would increase dosages or switch me to a different medication, and each time I found the frequency of attacks growing stronger. I never once abused these, or took more than the prescribed amount. More importantly, when I started the narcotics route, the only problems I dealt with were pain and the anxiety that it caused in my life. After 2 years, I was dealing with extreme fatigue and other autonomic effects such as numbness, tingling, spasms, and other symptoms that I had never had before (but which I've seen described in other CH sufferers).
My wife came home from the pharmacy one day, and said the pharmacist told her that my extreme fatigue could be due to the narcotics, and would only get worse. I called the doctor the next day, and began weaning myself off of the drugs. As I did so, I found out how bad my chronic daily CH headaches really were, which the narcotics were partly masking. Months later, long after withdrawal symptoms from the narcotics ceased, I was suffering 5 or 6 horrible attacks per day, every single day, could barely get to sleep at night, could hardly get up in the morning, and could hardly bother to shower or feed myself.
Before the narcotics I suffered headaches for years - weekly, sometimes daily, disappearing for weeks or months here and there. I hadn't heard of CH so I never paid attention to the seasons and never logged them, but they were orders of magnitude better than this. I never suffered from fatigue, and built a successful business with 15 employees during the first 6 years after the condition started. Now I have headaches all day that don’t quit for more than an hour, keep me from falling asleep until early in the morning, and when I do sleep I don’t sleep well.
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E-Double
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Re: Narcotics Cause Episodic -> Chronic?
« Reply #1 on: Dec 18th, 2007, 7:08am » |
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In addition to CH you may also be suffering from rebound head ahce which is bone crushing...to me feels like the mother of all migraines which suck. different but suck.
There are individuals who utilized different forms of narcotics to help them with the pain. These are meds such as fentynl (sp?); duragesic patch or laqtic lollipops.
Some have taken back their lives to an extent.
I do not condone or support anything other than one finding relief and a way to live a truly functional life.
In 2004 I missed a lot of time from work due to associated anxiety from CH. I received a strong kick in the arse from my wife and best friend and I haven't missed anytime and remain very strong and positive.
I myself am a chronic for nearly 4 yrs.
I went un/misdiagnosed for a decade suffering from episodic CH and did the SOS with vicadins or percs attempting to find my own relief. It didn't seem to do anything.
By the tiime I was ready for that "take me now" attitude, my cycles ended and I had relief for several months.
I finally got diagnosed and went through the usual treatments until I had enough.
I have been medfree for nearly 2 years with exception to a hospitalization over the summer which gave me a break during a really bad high cycle.
I only utilize oxygen to abort.
No one can definitively say what causes CH or what works or doesn't work.
WE just have a collective millenia of experience to share.
good luck, stay positive
Eric
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George_J
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Re: Narcotics Cause Episodic -> Chronic?
« Reply #2 on: Dec 18th, 2007, 10:00am » |
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I've seen that very definitive statement from e-medicine before--that narcotics may expedite the transformation of episodic CH to chronic CH.
Does anyone (Bob?) have any references to clinical trials that might indicate whether or not that is accurate?
Best,
George
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| « Last Edit: Dec 18th, 2007, 10:04am by George_J » |
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Monty
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Re: Narcotics Cause Episodic -> Chronic?
« Reply #3 on: Dec 18th, 2007, 10:29am » |
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I haven't seen that about opiates anywhere else. I also noticed a few things that I would disagree with in that article:
Quote:People who get cluster headaches often have a distinctive face. Typically, they are tall and rugged looking and have the following features:
* Leonine (lionlike) facial appearance
* Thickened skin with lots of very noticeable wrinkles
* Broad chin
* Vertical forehead creases |
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This is from one study that came out decades ago, hasn't been replicated, and is of no value to doctors or patients.
Quote:| Cluster headaches may be triggered by stress, relaxation, extreme temperatures, glare, allergic rhinitis (hay fever), and sexual activity. Eating certain foods may sometimes cause them. Using alcohol- or tobacco-containing products worsens cluster headaches. |
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To say that alcohol worsens clusters headaches does not accurately describe things - alcohol is the most consistently identified trigger. In a sizable majority of people in cycle, it triggers a headache quite dependably, and most episodics avoid all alcohol when they are susceptible. Out of cycle, alcohol does not generally have these effects.
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Guiseppi
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Re: Narcotics Cause Episodic -> Chronic?
« Reply #4 on: Dec 18th, 2007, 10:59am » |
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My early treatment for clusters was tylenol 3 with codeine, provided a little relief took the edge off, when that stopped working at all he switched me to fiorinal which relieved some of the pain and seemed to slow the pains progression a little also, when that stopped working we went to vicodain, again if I chewed them fast and swallowed them with carbonated beverages it would take the edge off.
I was on the narcotic route for about 2-3 years and stayed episodic. Hardly enough details for a "case study" I know! I wish someone had handed me an e-tank 30 years ago i could have skipped a lot of curled up head squeezing time!!!!!
And Chappy, no need to apologize for your posts. Throw out what you know and see what others can contribute. The collective goal of most people on this board is to help people stop hurting. Wishing you some pain free time soon.
Guiseppi
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Bob_Johnson
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Re: Narcotics Cause Episodic -> Chronic?
« Reply #5 on: Dec 18th, 2007, 12:43pm » |
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At this stage of our knowledge I'd be cautious about accepting this causal argument. In any case, there is nothing you can do with chronic except shift, at least try, lithium.
J Headache Pain. 2005 Feb;6(1):3-9. Epub 2005 Jan 25.
Chronic cluster headache: a review.
Favier I, Haan J, Ferrari MD.
Department of Neurology, K5-Q Leiden University Medical Centre, 9600, 2300 RC Leiden, The Netherlands.
Cluster headache (CH) is a rare but severe headache disorder characterised by repeated unilateral head pain attacks accompanied by ipsilateral autonomic features. In episodic CH, there are periods of headache attacks with pain-free intervals of weeks, months or years in between. A minority of patients have the chronic form, without pain-free intervals between the headache attacks. Chronic CH can occur as primary or secondary chronic CH; the rarest form is episodic CH arising from chronic CH. In this article, we give a review of the chronic forms of CH and focus on demographics, clinical manifestations, social habits, predictive factors, head injury, genetics, neuroimaging and therapy. It is remarkable that little is known about risk factors that make CH chronic.
Publication Types:
Review
PMID: 16362185 [PubMed]
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nani
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Re: Narcotics Cause Episodic -> Chronic?
« Reply #6 on: Dec 18th, 2007, 4:00pm » |
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on Dec 18th, 2007, 12:43pm, Bob_Johnson wrote:| At this stage of our knowledge I'd be cautious about accepting this causal argument. |
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Thanks for the info, Bob. It amazes me how much info you have stored in your brain, and hard drive. 
While I couldn't find the second reference to narcotics that apply to this subject in the e-med article, I did note that the article states accupuncture, naproxen and other NSAIDS can be effective prevents.
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Pinkfloyd
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Re: Narcotics Cause Episodic -> Chronic?
« Reply #7 on: Dec 18th, 2007, 8:04pm » |
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on Dec 18th, 2007, 4:13am, Chappy wrote: Now I have headaches all day that don’t quit for more than an hour, keep me from falling asleep until early in the morning, and when I do sleep I don’t sleep well.
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Hi Chappy,
Before I comment on some of your other points, can you please clear something up for me?
Based on this post (above quote) and I "think" one of your earlier posts, (Oh how I wish the "see last five posts from this person" worked on this site), I just wanted to make sure you knew what the "chronic" classification really means. You may but it is an often misunderstood diagnosis.
"Chronic" clusters has nothing to do with:
The number of attacks in a day, or a week, or even a month. You can have (and many episodics do) 8 attacks a day, every day for months, and are still not "chronic".
Your description above, does not describe "chronic" clusters. UNless of course, that describes you're daily routine over longer than the last 12 months..without a break of over a month in that 12.
Even if you are chronic, there are a few other new people on here that think they are chronic and they are not. Out of all the misunderstandings about cluster diagnosis and treatments, this topic is probably the most misunderstood, IMHO.
I'll respond further after hearing more background. One way or the other, welcome to the board. Lot's to be learned here from a lot of good people.
Bobw
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Jonny
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Re: Narcotics Cause Episodic -> Chronic?
« Reply #8 on: Dec 18th, 2007, 8:10pm » |
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Try running your links through tinyurl.com....they are blowing this thread for a fucking loop!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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Kevin_M
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Re: Narcotics Cause Episodic -> Chronic?
« Reply #9 on: Dec 18th, 2007, 9:29pm » |
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on Dec 18th, 2007, 4:13am, Chappy wrote:A veteran of the boards jumped in and disagreed that narcotics
can cause an episodic to go chronic, but said that narcotics
aren't useful for clusters because they act to slowly anyway. |
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I'd in general agree, but perhaps there's more
than one reason than if they are slow acting.
I have seen this.
Quote:More importantly, when I started the narcotics route, the only problems
I dealt with were pain and the anxiety that it caused in my life. |
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I haven't seen this with CH.
Quote:After 2 years, I was dealing with extreme fatigue and other autonomic
effects such as numbness, tingling, spasms, and other symptoms
that I had never had before (but which I've seen described in
other CH sufferers). |
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But I have seen this.
Quote:So I don't know if narcotics expedite the transformation of
episodic to chronic, but I know that from the time I started seeing the pain
specialist, and began taking the prescriptions of narcotics,
I started a slow losing battle. |
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This would be normal for many sufferers without an effective treatment,
previous narcotic use would have had no bearing on this outcome.
Rebound headaches from their use being different.
on Dec 18th, 2007, 4:13am, Chappy wrote:Months later, long after withdrawal symptoms from
the narcotics ceased, I was suffering 5 or 6 horrible attacks per day,
every single day, could barely get to sleep at night, |
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You say you had been diagnosed 10 days ago.
Working now to start a good treatment is your best bet.
Something like that for about 11 months a year
would sound chronic.
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| « Last Edit: Dec 18th, 2007, 10:44pm by Kevin_M » |
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Crappy
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Re: Narcotics Cause Episodic -> Chronic?
« Reply #10 on: Dec 19th, 2007, 3:53am » |
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Thanks everyone for the quick replies. A few responses:
First, I haven't been on the narcotics since May, so this was all past-tense. They weren't helping anyway. Also, what I was taking was extended release Morphine Sulphate, 3 times daily, with a few breakthrough breakthrough meds of different kinds, which were tailored to avoid rebound headaches. The daily headache cycles were about the same as I experienced after I quit, they were just more pronounced after I went off the meds, but they were definitely worse than before I had started them. Also, before I had started seeing the pain doc and taking narcotics, I hadn't had any problems with fatigue, numbness, tingling, sleeping 12-14 hours, sleep apnea, and other problems that eventually made me leave work. That's why I created this post, and was wondering if anyone else experienced anything similar.
It could well be that this was just the natural progression of my disease. I'll post my overall history now (with a link here for everone to review). I had 6 years of headaches, with no other problems. I then had a year of uncontrollable anxiety, and the pain was becoming daily without remission, which is why I asked my GP for drugs. He sent me to the pain specialist, so maybe I had already gone chronic, and maybe all of the other symptoms were just the natural progression, and not at all a result of the narcotics. I only mentioned them because of what we read in that one eMedicine article, and we all know how reliable a single reference is.
Regarding my diagnosis of Chronic Cluster Headaches, I haven't had a headache free period for more than a few days for the past three years, even with the narcotics. the diagnosis was finally given a couple of weeks ago by the Headache Fellow (neurologist) at the Mayo Clicnic in Scottsdale. I've read the diagnostic requirements from the IHS, and it's a bullseye. Luckily, the previous neurologists had already prescribed me Topomax and B2, and I've been taking Melatonin before bed for a year, so my headaches have been reduced to kip 2-5 for most of the day, and maybe 5-8 at night for a few hours at night. After diagnosis, Zomig kills my nightime headaches for a few hours, which has been absolutely awesome - I don't remember being completely headache free, not for years. I'll be getting oxygen next week, and can't wait!!!!
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Kevin_M
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Re: Narcotics Cause Episodic -> Chronic?
« Reply #11 on: Dec 19th, 2007, 7:54am » |
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on Dec 19th, 2007, 3:53am, Chappy wrote:Luckily, the previous neurologists had already prescribed
me Topomax and B2, and I've been taking Melatonin before bed for a year
so my headaches have been reduced to kip 2-5 for most of the day,
and maybe 5-8 at night for a few hours at night. After diagnosis,
Zomig kills my nightime headaches for a few hours, which has been
absolutely awesome - I don't remember being completely
headache free, not for years. I'll be getting oxygen next week,
and can't wait!!!! |
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I'm not sure if the tingling and such is a side effect of topomax
because I don't take it but it can have side effects.
Give your neurologist feedback on the preventatives including their
effectiveness, adjustments can be made if necessary or changes.
Preventive meds can be a difficult search. Sometimes it can be
like an eye doctor exam, when used, -- better? worse?
Oxygen with a Zomig backup sounds great.
Good luck. Welcome
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Kevin_M
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Re: Narcotics Cause Episodic -> Chronic?
« Reply #12 on: Dec 19th, 2007, 10:31am » |
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on Dec 19th, 2007, 3:53am, Chappy wrote:First, I haven't been on the narcotics since May,
so this was all past-tense. They weren't helping anyway.
Also, what I was taking was extended release Morphine Sulphate,
3 times daily, with a few breakthrough breakthrough meds of different
kinds,[from first post: Vicodin] which were tailored to avoid
rebound headaches. The daily headache cycles were about the same
as I experienced after I quit, they were just more pronounced
after I went off the meds, but they were definitely worse than
before I had started them |
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After stopping the previous use of narcotics, your tolerance for pain
may have decreased, a sort of "sensitizing" to pain; the influx of drugs
your system grew accustomed to having. I don't know the technical
stuff about it but have heard that before. It can also cause some
to progressively take more, which seems to follow the path you took, also.
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| « Last Edit: Dec 19th, 2007, 11:18am by Kevin_M » |
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Guiseppi
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Re: Narcotics Cause Episodic -> Chronic?
« Reply #13 on: Dec 19th, 2007, 10:48am » |
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Just a quick note, you were told to take B-2. I was told to do that about 8-10 years ago, along with magnesium. I swear I've had less and easier cycles since I started that regimen.
Guiseppi
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