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JakeArnouse

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Miami Newbie wants pain management advice.
Nov 5^th, 2009 at 7:29pm

It was the idea of my boss to search for you. I have suffered the CH's for about 3 years - a few months each year. I have seen some of the best doctors in the city of Miami - 9 in total - and am right back where I started. I know no others like me - so to find you - to hear your stories - to be so validated and acknowledged after even my best friends will make perturbed faces when I talk about my life - or lack thereof. I thought I was going crazy. I doubted myself. During my recent attacks I started begging for death - and after the attack feel deep shame over my inability to handle the daily pain. I have to live a life - work, clean, shop - and each day it becomes more difficult. I feel like I am losing myself to these CH's. In addition to the most intense pain I have ever experienced, I have dealt with the cynicism of the medical profession, and often they are just blatantly rude. My peers do not understand. And I don't know which is worse, having an episode, or the anticipation of the next one to come. I am tired of fighting and I feel like I have no more soul to push further. I feel trapped. I feel isolated.
There is no rhyme or reason to mine - I am very proactive with tracking them, my diet - stress level, weather changes - every conceivable thing I think might be responsible, and in the end - I admit - that I am no further along. These things take away my strength, my integrity, my pride, my beliefs, my confidence, and my love. I am now secondary to a CH. They rule, and I must follow.
I, like many of you, am afraid to eat, and of course, to sleep. I am afraid to be caught in public without my comfort zone and my pain routine. I have two yearly cycles (not episodes) triggered by, of all things, intense massage - is that even possible? Or a coincidence? I feel massive guilt over the inconvienence to my partners life. I apologize incessantly.
I have scanned this site today with the biggest smile my face has seen for quite some time. That may be strange considering the topic at hand, but to know - just to know that I am not alone - that did more than any of you could ever know.
I have read so many of your stories, possible treatments etc. But what about pain managment? It seems that none of us have the answers to stopping these. True - caffeine will help if I catch it in time, but I am a deep sleeper, and by the time I wake up - it's too late for me. I must endure. I stopped what the neurologist gave me because my medical covered 9 pills a month...that covers the first 4 days of the month for me...
We don't know why there are here, or how to make them go away - so then: What can we do to deal with them. If it is my reality - then what can I do to help me through the episodes? I do caffeine, and warm compresses if my partner is here to assist, I cannot tolerate light or sound, I never sit still but stagger through the dark house contorting and scratching at walls - I hit one and I turn and walk to the next. I have boxes of tissues for the nose blowing, and bottled water everywhere. Even though I turn off all the lights, every appliance or remote seem to have these tiny lights on them that stay on forever and even they cause me great pain. I deep breath and pray, and beg, and of course, I cry. Is this the best we can do? Warm or cold compresses or a red bull for what is considered the most intense pain a human can experience? Not only must I endure the cynicism of the medical profession and my friends and peers, but I must endure the sledgehammer of pain as well?
How can you tell between what will be a small 20 minute hit or a 8 hour ordeal? They seem to start the same for me. but with the cost of the medications and possible side effects I would react very differently to a 20 minute attack than a long 8 - 12 hour one if I could.
From a psychological perspective - for you long termers out there - how do you keep the faith? How do you convince yourself that this life is indeed, worth living? When everything we experience is to the contrary? I am such a happy person in my daily life. I talk to everyone I pass and I am extremely social - I have a strong spiritual side, but all that I am is in the line of fire, and I am being tested to a level that makes me afraid. I need to deal with the pain when it comes - and I need you to tell me how to better do that. I need to believe that I can make it through this. I need to know, without doubt - that the good moments, however small they may be, are worth all the pain and horror. I need perspective.
Anything you can offer to the pain managment side, and to keeping the faith angle, would be appreciated.

My brothers and sisters - I have finally found my tribe,
And I am grateful
Jake

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bejeeber

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Re: Miami Newbie wants pain management advice.
Reply #1 - Nov 5^th, 2009 at 8:01pm

Glad you found us Jake!

JakeArnouse wrote on Nov 5^th, 2009 at 7:29pm:

It was the idea of my boss to search for you.

VERY good idea of your boss's there.

JakeArnouse wrote on Nov 5^th, 2009 at 7:29pm:

...I don't know which is worse, having an episode, or the anticipation of the next one to come.

I and I imagine many others here can certainly relate to that terror factor.

JakeArnouse wrote on Nov 5^th, 2009 at 7:29pm:

I, like many of you, am afraid to eat, and of course, to sleep.

I think most of us aren't that afraid to eat. Dietary triggers (except for ALCOHOL, which is a HUGE trigger) don't appear to be that common from what I can tell.

Plenty of fear here of going to sleep amongst those who don't have abortives that work for them at the ready.

JakeArnouse wrote on Nov 5^th, 2009 at 7:29pm:

..what about pain managment? It seems that none of us have the answers to stopping these.

Tons of people have learned how to stop (abort and/or prevent) them. I've learned how to stop them with a lot of help from this forum (not that there's ever any guarantee that a huge attack won't come breaking through, just when you think you have the beast mastered). Just check that lil' ol' "oxygen info" link on the left of the forum view for starters.

Jake, I think there's a good chance you can get these pretty well under control, and pain management will cease to be as much of an issue.

Clearly you've already found out that just completely entrusting your care to any doctor as the entirety of your treatment plan is a big mistake and likely a one way ticket to hell, so get ready to take the treatment bull by the horns yourself. Things will probably get a lot better. Welcome home.

(All this is "IMO", I ain't no medical professional).

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« Last Edit: Nov 5^th, 2009 at 10:14pm by bejeeber »

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Guiseppi

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Re: Miami Newbie wants pain management advice.
Reply #2 - Nov 5^th, 2009 at 8:25pm

I've had CH for 31 years, had a great career, a wife and 2 kids, now grown...so you can live a pretty good life with CH.

I've had success using a 2 pronged approach, I'm episodic, typically 2 cycles a year, spring and fall, about 12 weeks long, 2 hits a day, am and pm. Here's my program:

1: A preventative program. A medication you take daily, while in cycle, to reduce the number and intensity of your hits. I use lithium at 1200 mg a day. Blocks up to 70% of my attacks. Verapamil, at doses higher then most docs are used to, and topomax are 2 other popular front line prevents.

2: A good abortive strategy. OXYGEN, OXYGEN, OXYGEN!!! You'll hear this a lot. I can abort an attack in 6-8 minutes using 02, used to take a 90 minute pain ride with every attack. Read the oxygen info link on the left as it must be used correctly or it's useless. Imitrex injectables are effective but are expensive and I hate the after effects. Energy drinks, those containing the combo of caffeine and taurine, chugged at the first sign of an attack help to abort for many.

You have much reading to do. It's incumbent on you to educate yourself and work with a doc who is either knowledgeable on CH, very rare as it's a rare condition...or at least open minded to reading the info you bring them.

Welcome home brother, you're not alone anymore, we understand your pain.

Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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Bob Johnson

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Re: Miami Newbie wants pain management advice.
Reply #3 - Nov 5^th, 2009 at 9:29pm

Assuming the Dx of cluster is correct, it follows that working with the best headache specialist you can find is essential. Reardless of how many docs you have seen, the frustrating reality is that many good docs have so little knowledge/experience in treating complex headache disorders that wandering in the darkness seeking relieft is an all too common experience for us.

Second, while your emotional distress is clear, we can offer only the broadest of suggestions in the absence of a good medical history (past treatments, meds, dosing, duration of use, responses, etc.) So, two items which I hope may help:

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. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Look for "Physician Finder" search box. Call 1-800-643-5552; 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.
---------------------

Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

(Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]

=====

It's not possible to predict the duration of any attack of cluster and so the best strategy is the development of treatment program (including preventive and abortive meds) and work it carefully, only making changes after a decent trial of any given combination. The drive of pain too easily translates into erratic changes in meds, dolsing, duration, etc. so that it becomes impossible to develop some grounded understandings of what works for you. Hence, the need for a good headache specialist.

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« Last Edit: Nov 5^th, 2009 at 9:34pm by Bob Johnson »

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Joni

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Re: Miami Newbie wants pain management advice.
Reply #4 - Nov 6^th, 2009 at 12:47am

Read, read, read on this site and find a good headache specialist (neurologist). You have already been given good advice here. I know how you feel and promise you will have better days. There have been many times I have had to be reminded of that, too...but this too shall pass. I have had them for 25 years and have been successful in my career as well as had a full personal life. Most of the time, my cycles have been fairly controllable. A few have not cooperated as well, but that is only a few cycles out of dozens over the years. You will get better, but you must keep informed and find a doctor that is informed.

Good luck!
Joni

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Experience: That most brutal of teachers. But you learn, my God do you learn. -C. S. Lewis

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Iddy CH.com Alumnus Offline Smile Posts: 486 Toronto,Canada Gender:	Re: Miami Newbie wants pain management advice. Reply #5 - Nov 6^th, 2009 at 9:38am Hi Jake welcome to the family. You will find that educating yourself through all the advice that has been given so far is most important. With the help available and support! from this site you will! get your life back. Stay close. Oh yes o2 rules!!! All the best
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JakeArnouse

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Re: Miami Newbie wants pain management advice.
Reply #6 - Nov 8^th, 2009 at 7:25am

Thank you all so much for your feedback!
First - I know my problem was that I considered them migraines per my doctor - and they are not. These CH's are another form of similar ailment.
I poured over your site - and I did what the first gentleman said - "have everything at the ready". I was going through my attacks without any medication whatsoever - so every attack was mind blowing. Trying to maintain your daily schedule with these is not possible!
I got these nasal sprays that are all natural but help. I got red bulls. I ordered these tiny oxygen cans (I know not effective but they might help?) in the mail, and I got some pills from a friend - some sumatriptan.
Now instead of a beaten victim I feel like a warrior!! I just went a whole two days and every attack was aborted within 20 minutes of so - the pain maybe reaching a 3 out of 10 before fizzling out. Extraordinary. Really.
I am trying to get into one of the specialists but it takes months to get the appointment - and most likely my cycle will be over by then - but I will log all attacks for him so that I can still get the oxygen which seems to work wonders for you all.
I am so happy with this site - you totally got me turned around - with all the advice - I was able to immediately gain control of mine.
One question: Sumatriptan - should I take for every attack? How many can we safely take? per day?

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Joni CH.com Old Timer Offline Knowledge is Power Posts: 476 Gender:	Re: Miami Newbie wants pain management advice. Reply #7 - Nov 8^th, 2009 at 12:03pm Sumatriptan: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
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bejeeber

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Re: Miami Newbie wants pain management advice.
Reply #8 - Nov 8^th, 2009 at 9:28pm

Hey Jake - I was in a similar and not at all uncommon situation where there was a several month waiting period before a headache specialist appointment would be granted. This is such bulls**t really for any so called headache specialist to do this. They could reserve a certain amount of emergency slots for such patients, but that would take a doctor who wasn't an arrogant d**khead or only in it for the money "Oh, you just are experiencing the worst pain know to mankind, I could care less, maximizing my fabulous wealth is my only concern".

OK enough of that rant - here's how I worked around it: I went to our "family doctor" GP who I had never seen before, and luckily got an appointment with the physician's assistant there. She didn't know jack about CH, but not being a doctor, she wasn't swaggering around all arrogant and crap (oops I started ranting again! Tongue

). I showed her what I had been prescribed before, told her it worked well, and next thing you know I'm swaggering outa there with O2, Imitrex, etc. prescriptions.

This might have worked just as well with the MD there, but I did have an advantage over your situation since I had a track record with O2. Maybe there's some neurologist or someone you could make an appointment with in the meantime, and armed with convincing info, you could get O2, a preventative such has Verapamil, and imitrex prescriptions sooner than later....

Or what the hell, why not just go to a welding supply place and pick some O2 up tomorrow without prescription - it's reputedly the same stuff!

I'm a big fan of Imitrex (Sumatriptan) actually. The injection form is widely considered much more effective than the pill form. There are pitfalls you have to watch out for though! Just aborting every attack with it can get you into a rebound cycle, and some folks feel doing this has caused them to go chronic, which is beyond scary of course.

So I would advise diligently pursuing a good preventative prescription, and using O2 as the first line abortive, Imitrex injections as the last resort abortive. When I'm at peak episode and I follow this approach I can still need a few imitrex jabs a day, since the attacks hit so strong and frequently.

How many injections can you take a day? TWICE as many if you follow the guidelines in the miraculous and life altering "imitrex tip" link on the left.

I remember taking 5 full injections in one day once during an incredibly desperate episode before I knew about the imitrex tip. That was pretty dang risky (and it hurt my credit card very badly too), but if I'd used the half injection doses, I would've actually been within dosage guidelines - under the 3 full injections a day max I was told of at that time.

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« Last Edit: Nov 9^th, 2009 at 2:11pm by bejeeber »

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Charlie

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Re: Miami Newbie wants pain management advice.
Reply #9 - Nov 9^th, 2009 at 9:37am

It's good to meet you but I'm sorry it's related to this horror. This is something that I post here and I hope you give it a try:

Dr. Wright’s Circulatory Technique

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. This technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hand with redirected blood. The important part is that it has to be done without interruption until it has some effect. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately but it almost always worked after a time. Try experimenting between attacks. You will find that it gets easier with practice.

I was given less than five minutes instruction in the use of this method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

I hope this technique is helpful and I wish you the best of luck.

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There is nothing more satisfying than being shot at without result---Winston Churchill

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JakeArnouse

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Re: Miami Newbie wants pain management advice.
Reply #10 - Nov 9^th, 2009 at 5:13pm

Folks,

I have read so many of your postings - and so many of you suggest following "the links on the left" to more information on medications, 02 etc.

But what links? From the main page? I have seen postings, but no links whatsoever to the information you describe. Could someone please be more specific about this as I feel slightly lost when trying to track someone'es directions through the site...

Maybe these CH's have finally blown the last of my brain cells? I knew it was bound to happen....

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Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: Miami Newbie wants pain management advice. Reply #11 - Nov 9^th, 2009 at 6:50pm Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Here ya go. Potter
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bejeeber

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Re: Miami Newbie wants pain management advice.
Reply #12 - Nov 9^th, 2009 at 7:07pm

Man I was afraid that could happen - the links will show up with some URLs and not others. Shocked

That's just wrong - I think I'll go ask about "can't there be a redirect to solve this confusion" over on the tech message board. Angry

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Marc Ex Member Gender:	Re: Miami Newbie wants pain management advice. Reply #13 - Nov 9^th, 2009 at 7:18pm It's also really easy to automatically post it the way the Kinder Gentler Dude did: Click here: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Marc
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bejeeber

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Re: Miami Newbie wants pain management advice.
Reply #14 - Nov 9^th, 2009 at 8:33pm

Marc wrote on Nov 9^th, 2009 at 7:18pm:

It's also really easy to automatically post it the way the Kinder Gentler Dude did:

Click here: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Marc

Yeah, right I'll go back to doing that if I have to, but a lot of people don't know about this, or how to work around the flaw, and still routinely direct people to "links on the left". I will quote Jake here from his post above: 'so many of you suggest following "the links on the left" '.

A flaw it definitely is when you have new visitors looking for critical, potentially life saving info and it isn't there for them.

What's really easier is implementing a re-direct, so users don't have to either be confounded by this flaw, or be expected to know about it and figure out they have to paste links into their messages to work around it.

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« Last Edit: Nov 10^th, 2009 at 11:43am by bejeeber »

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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RichardN

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Re: Miami Newbie wants pain management advice.
Reply #15 - Nov 10^th, 2009 at 5:08pm

Hi Jake and Welcome Home

Definitely get 02 as soon as possible. A life-saver (in a very real sense) for most of us.

We know your pain . . . we know the fear of that pain. I've been here since 2/02, after a year of tests (CT scans, MRI), mis-diagnosis and non-working meds. This place gave me the info to take to my doc and get some control over this beast of ours.

You have much reading to do . . . and many questions to ask . . . fire away. The answers you will get here comes from folks who truly know your pain.

One of my favorite motto's on this board is, "Nothing works for everyone, but SOMETHING works for everyone" . . . and here you have a very good chance of finding the "something" that works for you.

Be Safe, PFDANs

Richard

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I can live with the beast as long as I don't have to "dance" with the bastard.

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