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Topic: Finally! Others who know what it's like! (Read 239 times) |
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kjsnuffy
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Finally! Others who know what it's like!
« on: Oct 13th, 2006, 8:18am » |
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Hi. I'm somewhat of a computer-phobe, so I had no idea that a site like this existed. Wow. In the twenty years that I have endured clusters (first episodic, now chronic), I have not met a single other person with CH or even anyone who can really appreciate the unparalleled agony of an attack. Reading the similar experiences of others had a surprisingly profound emotional effect on me. I think that I'll be making frequent visits to this wonderful site, in order to help me through some of the inevitable trials of our illness. Perhaps my decades of experience with CH will allow me to help a few others.
My clusters began at age eighteen, with a "typical" episodic pattern. My family doc listened to my unusual and extreme symptoms and immediately told me that I probably had a brain tumor. Thank God, I did not, but little did I know how these terrible attacks would come to dominate my life for the next many years.
Over the ensuing two decades, the episodic clusters have morphed into chronic and even more severe ones.
I have had ample time to try out myriad treatment regimens, both prophylactic and abortive, with, until recently, fairly abysmal results. I have used beta blockers , calcium channel blockers, tricyclics, sansert, most of the ANSAIDs, antihistamines, nasal lidocaine, intra-nasal hot pepper extract (OUCH!), high-flow O2 by mask, lithium, most of the triptans, DHE, midrin, fiorinal (I don't recommend this), cold, heat, magnesium, steroids, nerve blocks, acupuncture, caffergot pills and suppositories, and probably several others that have slipped my mind. Although many of these treatments probably work for some CH sufferers, few did anything for me, and several had disconcerting side-effects.
About three years ago, I began seeing an anesthesiologist pain doctor, who, unlike many practicioners, has really taken the time to help me figure out an effective treatment strategy. My main anti-CH weapon is O2, by mask, at a flow rate of 10 or higher. This completely aborts my headache in most cases. I have about two or three headaches per week that do not respond to the oxygen. For these, my doctor prescribes fentanyl lozenges. These are strictly limited to no more than two doses per week. I recognize that opiates such as fentanyl are ineffective for many CH patients, and they can be very dangerous if overused or misused. To flatly state that opiates never have a place in CH treatment, as I have read several times on this message board, is to deny a treatment modality that is effective for some CH sufferers and is safe when doctors and patients are serious about strictly limiting the frequency of usage and carefully monitoring usage through frequent follow-ups (I see the doctor every two months), random drug urine screenings (I always pass, because I have never taken an illegal or unprescribed drug in my life), and strict record-keeping by the physician. My point is that, in rare cases of refractory CH, narcotics can be an effective and safe adjunct to other treatments. The majority of CH patients can be better helped with other treatments, and should probably avoid nacotics.
We have to keep in mind exactly how ridiculously severe CH pain can be. Many authorities think that CH pain represents the most severe pain known to humankind. For me, my infrequent use of prescribed opiate painkillers has been a lifesaver, probably literally. You might like to know that, in the past three years, since I began this treatment regimen, I have never increased my dose or frequency of narcotic use, and my oxygen continues to be my big gun in fighting this illness.
This was my first posting. I know I rambled on ad nauseum, and I promise to avoid this in the future. It felt good to rant, though. Please don't respond too harshly to this novice.
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BB
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Re: Finally! Others who know what it's like!
« Reply #1 on: Oct 13th, 2006, 10:17am » |
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Hello and welcome ,
What an eloquent and responsible first post!
I am sorry to hear you have such difficult CH but I would like to be the first to welcome you to the family.
You are absolutely right about the effectiveness of well regulated narcotic pain killers in chronic refractory CH. It can be very useful if used properly and responsibly under guidance of a specialist. However, its not that easy to maintain that degree of self control when one is in excruciating pain, and some people may feel apprehensive about being randomly drug tested.
Chronic severe CH not responsive to any preventive medications thankfully is rare. The first notion to say no to narcotics straight up is to encourage people to try safer, less addictive medication first.
There are definitely several aspects to achieving good management of CH, I believe they are:
1- Abortive treatment.
2- Preventive treatment.
3- Pain management.
4- Psychological support.
How and which one(s) is required depends on each individual case.
I am very glad though that oxygen works so well for you and that the hits that break through can be controlled by pain killers, and I admire your compliance and responsibility in using them. Kudos to you.
Lastly thank you very much for sharing your knowledge. Please stay and tell us more about yourself and your experience.
Take care and painfree wishes to you.
Annette
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roy21302
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Re: Finally! Others who know what it's like!
« Reply #2 on: Oct 13th, 2006, 10:18am » |
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You didn't post a name-- but welcome to the board, glad you found it--- there lots to read and find out about on here and yes your right some will disagree with your medication, but I say if it works for you and your Doctor prescribes it good luck. Not many thing work for every one, O2 seems to be a good bet and is used by many. Give us a name and tell abit more about your CH, stick around its quite a good crowd Cheeers Roy
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Richr8
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Re: Finally! Others who know what it's like!
« Reply #3 on: Oct 13th, 2006, 11:05am » |
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Welcome Snuffy!
Yep, can't top the emotions that hit when you first find this place. I suffered alone for fourteen years then one day stumbled in here. I cried for hours. Doesn't look like there is much to tell you, your CH bio runs the gamut (sic) of everything I'm aware of, less some of the alternative approaches you can read about here. Regarding your O2 useage, , do you use a non-rebreather mask? Also, many of us use the O2 at 15 lpm with great success. Just curious.
I'm looking forward to you seeing you around and sharing experiene, pain , and support.
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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kjsnuffy
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Re: Finally! Others who know what it's like!
« Reply #4 on: Oct 13th, 2006, 1:22pm » |
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Oh yeah, I forgot to leave my name. I'm John.
Thanks for all of your kind and supportive replies. I really look forward to learning from and communicating with you in the near future.
As you can see, I'm a little defensive about the whole narcotic thing. I certainly only see it as a very last resort. I am actually overall quite anti-narcotic, and I agree that this avenue should not even be considered unless you have tried almost literally every other possible treatment. I definitely see your point that the extreme severity of pain with CH is the very factor that can lead one to overuse opiates. This is why I (along with my doctor) have set very rigid limits as to the number of times per week that I can use narcotic abortive therapy. I have had many instances where I have had three to five O2-resistant headaches per week, but I never, EVER have broken the rule of no more than two fentanyl treatments per week. In these cases, I just have to drag myself through the 1.5 to 2 hours of agony. In my view, this absolute limit is essential if one wishes to avoid the very slippery slopes of narcotic overuse, tolerance, rebound headaches, or addiction.
I wish to reiterate that I do not want to be considered the poster boy for opiate treatment of CH. I use opiates for only a small fraction of my CHs (around 5%), and I am always looking for new and better ways of lessening the severity and frequency of these horrid things. As a rule, I would agree that opiates are a very poor and risky treatment modality for CH.
This is the last that I have to say about this polarizing issue.
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Tata
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Re: Finally! Others who know what it's like!
« Reply #5 on: Oct 13th, 2006, 2:22pm » |
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Dear John--I'm so glad you were able to find this place. It's helping me tremendously, from info to take to my Doc to just seeing how these amazingly strong people help and support each other. I can't blame you for the defensiveness re: the whole drug thing--anyone who's ever been left for hours in an emergency room while the Docs try to figure out if you're just a junkie looking for a fix can relate to how you feel. When I was bartending, I had a customer (who was a little shady) offer to find me some HEROIN after he saw me get slammed fast and hard by a head ache during my shift. Now, I know I look like dog-poo when I'm getting hit by a bad one , but HEROIN??!!  Man, I'm glad he was just a biker with connections and not one of those "angel of death" nurses who like to "help" put people out of their misery. Anyway, glad you're here--you already heped me with your first post. I was trying to remember the name of a drug that I was given that didn't work so I can tell my Dr and you mentioned it--Fiorinal. Thanks and take care.
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Sandy_C
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Re: Finally! Others who know what it's like!
« Reply #6 on: Oct 13th, 2006, 3:36pm » |
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Hi John, and welcome to the family.
Please, there is no need to feel defensive about using a narcotic to help you through the pain of CH. As long as your physician has prescribed it, and as long as you have the self-control not to take more than is prescribed, and as long as you find it helpful to you - then it is a viable help to you, and you should continue using it.
We are all very different in how we respond to our CH pain, and in how we respond to different medications. What works for one, may not work for another. We will never say that what you are taking is wrong. We will tell you what works for each of us, what we've tried (although it appears you've tried just about everything), and we will offer you our support when you need it.
I am an episodic sufferer, fortunately with 18 to 24 months of pain free time between cycles. I am in my 14th month of PF, and have been using one of the "alternative" medications in an attempt to completely ward off the next cycle. I do not abuse the dosage, I do not overdose to get the "high", and I do not apologize for it. If it works for me, then it works for me. I don't ask anyone else to approve, understand, or copy my methods. Neither should you.
Please stay around and share your experiences with us. We can all learn something from each other, and, we will also allow you to rant, rave, scream, cry, swear, throw bricks, whatever - as long as you agree to listen to us when we do the same .
Again, John, welcome to this crazy family. I look forward to reading more of your posts.
Sandy
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Lean on me when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
Till I'm gonna need
Somebody to lean on
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kjsnuffy
New Board Newbie
I love YaBB 1G - SP1!
Posts: 3
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Re: Finally! Others who know what it's like!
« Reply #7 on: Oct 14th, 2006, 11:44am » |
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This superb site is already making me feel better about myself and my affliction and a little less like a misunderstood freak.
With respect to Tata's comment about visiting ERs and being treated like a junkie, this has got to be one of the most frustrating and humiliating experiences we can face. All that we want is relief from this accursed head/eyeball explosion, and the nurses/doctors act like we are psychotic or histrionic or trying for an Oscar because we can't stop pacing and holding our heads. I have actually been told that I was faking, because someone with so much head pain would not move so much!
I think that one big problem is many doctors' and nurses' complete ignorance or misunderstanding of CH. Most ER docs/nurses just refuse to understand that CH is different from migraine. Because they see countless migraineurs and few clusterheads, we obviously look bizarre and suspicious to them. Therefore, in some of their minds, we are faking! There have been countless times where I have wished just one single cluster attack on my insensitive nurse/doctor. I think that the world would be much more understanding & patient with us if everyone had to experience this just once. (Because I am not a sadist, I obviously would not really want this.)
Thankfully, ER visits are a thing of the past for me, now that I have a good doc. My long-suffering wife can now sleep, instead of carting me, rocking and squirming, to the ER. (She never complained, though. She is my rock!)
I was interested to hear that there are other site members who sometimes have attacks that last longer than the "typical" 20-30 minutes. When mine began, they were usually quite short. Now that they are chronic, untreated ones can last hours. This sucks!!! In my CH research, I have read that CH can last for hours, but some medical professionals use long HA duration as an absolute exclusion criterion. This is arbitrary and misguided, given the diversity of CH experiences.
Talk to you in a few days.
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