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pystal

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how do i convince me dr. to take me seriously?
Jun 25^th, 2010 at 7:14pm

im 28, married, 4 kids, and have had these headaches daily for 2 yrs. ive always had frequent headaches but for the last 2 yrs every day at 3 pm it starts. a horrible hot stabbing disgusting pain ussually in my right temple. sometimes i scream very loudly with no self control or consideration for anyone or any place. it can be imbarrassing. then the pain starts, of course just minutes before three of the kids get home from school. it will last until i wake the next morning or sometimes ill wake all through out the night and it will continue into noon. 3 hours pain free then im SCORCHED right in the side of the freakin head. ive explained all this to the doctor, hes prescribed me a large shoebox full of meds, nothing works. i took so many drugs i got an ulcer. i just feel so horrible that all my kids ever hear out of me is leave me alone, not right now, dont do that, turn that down, quiet my head hurts. i have to have alot of self control when the kids are around so i dont scream at them or scare them. ive clenched my jaw so hard i cracked teeth, i sit and flex my calf muscles rapildy i rythum, that helps alittle, and sometimes i just hide in my closet when every one is busy and just cryas intense but as quietly as i can. can or does anything else help? Cry

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: how do i convince me dr. to take me seriously? Reply #1 - Jun 25^th, 2010 at 7:19pm Oxygen. Read the oxygen info link to the left. Seriously.
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wimsey1

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Re: how do i convince me dr. to take me seriously?
Reply #2 - Jun 26^th, 2010 at 7:58am

Welcome, glad you are here and sad you need to be here. As you read along on this site you'll find many of us had trouble finding a Dr who understands CHs. And you'll find many of us have had to become our own best advocates. That means reading and reading and priniting article after article. You might also look for a pain clinic or headache specialist who already deals with CH patients. It can be a tremendous relief when you talk with someone you don't have to convince or educate. Lastly, find abortives that work. O2, and energy drinks like Red Bull or Monster with 1000mg of Taurine slammed at the first sign of a hit, work for many of us. Hang in there, and get the help you deserve! lance

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Bob Johnson

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Re: how do i convince me dr. to take me seriously?
Reply #3 - Jun 26^th, 2010 at 10:56am

One of the biggest problems we face is finding a doc who knows about CH. It's such a rare disorder that many docs never see a case; their med school education is meager, at best.
========
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. 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.

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

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NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
======

Print out the PDF file, below, to use as a tool to discuss treatment options with any doc you see. If they don't accept this material and/or have some grasp of the approach outlined, it's a good signal to move on.

You should hear any doc talking to you about the meds and approches outlined.

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« Last Edit: Jun 26^th, 2010 at 10:59am by Bob Johnson »

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(144 KB | 27 )

Bob Johnson

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shaggyparasol

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Re: how do i convince me dr. to take me seriously?
Reply #4 - Jun 26^th, 2010 at 11:07am

Yep, for now do what those guys said. Use caffeine to abort the attack. Must be drunk (drank?) right at the first tingle of the hint of an oncoming attack. If you get an attack at 3 oclock every afternoon, drink one at 2:45. If you don't drink caffeine, think about starting. Weigh the pain vs. the caffeine use.

Also try the melatonin regimen that people have some success with here. Good for the nighttime hits as you can sleep without the caffeine stimulant.

Find oxygen and read here what to get and how to use it. I bet you could be up and running in a few days. Go big, don't use a little oxygen and claim oxygen doesn't work for you.

Choose between finding a good headache doctor (emphasis on good headache doctor), not a generalist that doesn't know clusters. You already found one of those it seems.

When you are sick of the many failures of the medical community and cluster headaches, go to Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

and seek 'alternative' help. No ulcers there.

Don't get me wrong, there are several combinations of pharmaceutical drugs that work well enough on the clusterheads with associated side effects. And the alternative medicines are not perfect either, but there is a choice. Someone will be here shortly to describe prescription meds that should work. I haven't tried them.

If what you described is your life?? Get on this now!! get a redbull arsenal ready for today's attacks. Read the melatonin protocal for tonight! Find a welder supply store for oxygen today and order your mask and regulator online today! Pystal, your life sucks, so did ours, but you can take control. Wink

--Shaggy

ps, Oh and to answer your title question, your doctors will take you seriously when you take serious steps to relieve your own pain. Let's get busy! Angry

Boo-ya!

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deltadarlin

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Re: how do i convince me dr. to take me seriously?
Reply #5 - Jun 26^th, 2010 at 11:21am

pystal wrote on Jun 25^th, 2010 at 7:14pm:

im 28, married, 4 kids, and have had these headaches daily for 2 yrs. ive always had frequent headaches but for the last 2 yrs every day at 3 pm it starts. a horrible hot stabbing disgusting pain ussually in my right temple. sometimes i scream very loudly with no self control or consideration for anyone or any place. it can be imbarrassing. then the pain starts, of course just minutes before three of the kids get home from school. it will last until i wake the next morning or sometimes ill wake all through out the night and it will continue into noon. 3 hours pain free then im SCORCHED right in the side of the freakin head. ive explained all this to the doctor, hes prescribed me a large shoebox full of meds, nothing works. i took so many drugs i got an ulcer. i just feel so horrible that all my kids ever hear out of me is leave me alone, not right now, dont do that, turn that down, quiet my head hurts. i have to have alot of self control when the kids are around so i dont scream at them or scare them. ive clenched my jaw so hard i cracked teeth, i sit and flex my calf muscles rapildy i rythum, that helps alittle, and sometimes i just hide in my closet when every one is busy and just cryas intense but as quietly as i can. can or does anything else help? Cry

I'm confused. Does your pain stay at the same level the whole time (it looks like you're saying that you have this intense/horrible headache at the same level for 21 hours and then have 3 horus pretty much pain free).

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bejeeber

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Re: how do i convince me dr. to take me seriously?
Reply #6 - Jun 26^th, 2010 at 6:08pm

I just wanna pipe in and say that the foks who have responded so far really know what they're talking about (includng Shaggy, with his suggestion to check out clusterbusters.com), so you can take their advice seriously.

If your type of hellish pain syndrome is indeed of the CH variety, well stick around here will ya?

Many including myself have found ways to counterattack this beast very effectively, in large part thanks to info and advice obtained here.

As you have found out already, doctors generally don't know jack about CH. You really have to take charge of your own treatment program, which is clearly what you intend to do - good on ya! Cool

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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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Lettucehead

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Re: how do i convince me dr. to take me seriously?
Reply #7 - Jun 27^th, 2010 at 6:24am

Hi Pystal!
Welcome and I'm so sorry for your suffering.
I'm questioning that it may be not so much that your doctor doesn't take you seriously, as she may not know quite what's going on and therefore how best to help you.

Please, first thing you need to do is get an appropriate diagnosis. You may or may not have cluster - you may have one of many many conditions including hemicrania, migraine, tumor (god forbid), rebound headache, etc etc.

You mention your doctor - have you seen only the one? Please, if you haven't already, keep a detailed headache diary and see a neurologist - preferably, one who has specialist training in headache diagnosis and treatment.

You deserve to feel better, your children deserve their mother, you deserve your life to be the best you can make it - and this all starts with an appropriate diagnosis that can guide treatment...

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Listen, and understand. That terminator is out there. It can't be bargained with. It can't be reasoned with. It doesn't feel pity, or remorse, or fear... 'The Terminator' AKA CH

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Guiseppi

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Re: how do i convince me dr. to take me seriously?
Reply #8 - Jun 28^th, 2010 at 10:14am

Yeah.....as basic as it sounds an accurate diagnosis is critical. If you're not already doing so start keeping a headache diary. When they start, how fast they build how high they peak, how long they stay at peak, how fast they go away. A stabbing pain? Throbbing pain? Have you identified any triggers? The more details the better.

Then get to a headache specialist. GP's are damned good at what they do, diagnosing a million different things that go wrong with the body. They are RARELY the source for relief from a complex headache issue. Some on the board suffer from a combo of headache types...imagine the nightmare of trying to diagnose that!

Use Bob's post to try and find yourself a decent specialist. Get those kids their mommy back! Keeping you in our prayers.

Joe

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

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