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scrapinby
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Newb from Michigan
« on: Aug 2nd, 2005, 3:03pm »
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Hi all!  I'm glad I found this site.  I have been having really bad headaches that wake me up for the last three weeks.  About 9 days ago I went in to an urgant care, where the doctor examined me for about twenty seconds and wrote me a script for antibiotics to cure my sinus infection.  Three days later I got in to my family doctor where they seconded the sinus infection, and tried to write me a script for 800 mg motrin for the pain.  I explained to her that I already had that, and it wasn't touching this headache.  So she upped the ante and went for the Tylenol 3.  After about a week of trying that I finally went to the ER last night.  On the way there the headache went away, so I decided to sleep in the parking lot of the ER, knowing that it was just a matter of time before it returned.  Sure enough, an hour later I was up with another headache.  I went in and was seen about 45 minutes later.  By the time the doctor had got done asking my first round of questions the headache was gone.  I got to do a really cool Cat scan, and sit again for another 45 minutes.  This time the doctor came back and told me to lay down and try to get the headache to come back.  I had no luck with that, as there was a drunk next to me that didn't understand why he was being forced to take a drug test or why he was being arrested after crashing his car into a light pole.  Another doctor then comes in and gives me oxygen to see if that helps, and told me that I fit all of the symptoms of cluster headaches, and to try to go back to sleep.  I had no pain, but I only layed there for about 30 minutes, and had no headache to begin with.  She comes back to confirm that I have no pain.  She then sent a nurse back to check me out with another script for 800mg motrin.  If I ever cut off a limb I'm going back to that hospital to see if they will put a band aid on it for me.  By the time I get home it is 7:45 AM, so I call in to work, tell my wife what happened, and called my doctor's office at exactly 8 AM to try to schedule an appointment.  No doctors can see me today.  I call the urgent care facilities, none of them can help me.  I call a headache specialist, he can't see me without a referrall.  I call my doctor's office for a referrall, no answer.  I leave a message with no return call (as a write this it has been 6 hours).  I went to my allergy doctor who referred me to a neurologist (victory!), who can see me in two days (bummer).
 
Sorry for the long post, but I'm kind of scared of this condition, and kind of angry about this whole process.  I guess for the next couple of days I'll drink a lot of water and take my 800 mg motrin every 8 hours.
 
Mike
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Re: Newb from Michigan
« Reply #1 on: Aug 2nd, 2005, 3:15pm »
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Hi Mike...sorry you had to find us, but I'm glad you're here. You have 2 days to learn everything you can...
First: keep a headache diary. Record time of day, duration, intensity, etc.
Second: Read and print this. Take it with you to the neurologist.
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
Third: do the same with this:
http://www.brightok.net/~mnjday/chtherapy.pdf
 
Read everything you can here, information is your best weapon. Ask questions if you'd like. We'll share what we've learned.  
Ice helps some people, heat helps others.  
Sticking your face in front of an A/C vent helps some.  
Hang in there. Good luck and pain free wishes, nani
 
Oh... and don't overdo the Motrin...it's not really going to help.
« Last Edit: Aug 2nd, 2005, 3:16pm by nani » IP Logged

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Re: Newb from Michigan
« Reply #2 on: Aug 2nd, 2005, 3:22pm »
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Mike,
 
Welcome to the site. Sorry you're having a bad time.
 
Many of us have had the kind of doctor stories you've experienced. It does, at times, feel as though unless you've got high cholesterol, the doc's have a tough time with a recommendation or solution. But, there are many docs out there that are getting it right -- and many resources like this site that can help you educate more doctors.
 
First and foremost. Did you take the cluster quiz? It can help you in identifying characteristics that you may be experiencing, and if there are some that are not indicative of a cluster headache. There are many types of headache.
 
Secondly, read the info on this site and the links. There's great info there that can help you prepare for your doctor's appointment. (Since you have two days to kill.....) If you find that after taking the quiz you're pretty assured that you have CH still, then you can have an idea of some things to ask the doctor for right away. Things like the info on O2 (oxygen therapy) are excellent. Many doc's may know about it, but many more will try to give you ineffective rigs for its use with flow rates that are not high enough, or the wrong type of mask. Many find excellent abortive meds such as Imitrex and prophylactic measures in the form of other meds to be very effective. Read up!!!!!
 
There's also some alternative therapies that you can read up about as well. Many have found results from Kudzu and clusterbuster treatments (see the threads for details).
 
You sound as though you're not a quitter, or going to take what they give you at face value. That's good. This site can help you know when the info they're giving you is questionable or when to go back and insist on something else.
 
I'm from Michigan as well (now in the Carolina's) and spent my years in East Lansing. Go Green, Go White! Use to bartend at Crunchies for a few years when I was in school.
 
Scott
 
 
 
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Re: Newb from Michigan
« Reply #3 on: Aug 2nd, 2005, 4:37pm »
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Hi Mike and welcome to the madhouse! Sorry you had to come looking for us.
 
I hope you find some relief soon.
 
BTW, are you near Ann Arbor? There is an excellent headache clinic there called MHNI. Just a thought. www.mhni.com
 
Best wishes
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Re: Newb from Michigan
« Reply #4 on: Aug 2nd, 2005, 5:46pm »
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Go prepared to that neurologist appointment with every thing you can get your hands on.
 
Keep track of the attacks
 
Get the CT scan over to the neuro's office
 
Gather information on CH and note how it fits with the attacks you are getting.
 
Take the cluster quiz and give the neuro. your results
 
Read, read read and go prepared.  
 
 
Sorry to hear your suffering.  If its clusters you've come to the right place  
 
Good luck
 
Tom  
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Re: Newb from Michigan
« Reply #5 on: Aug 2nd, 2005, 7:57pm »
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Hi Mike,
 
Welcome to the famiily from another Michigander.  Nani gave you the link of ALL links.  Print it out, read it, memorize it, and take it with you to the doc - along with the headache diary you are keeping (right?).
 
If you have a fairly accurate diary, you can be diagnosed easily without waiting around for hours trying to have another headache that they can observe and try to treat.
 
You'll still probably have to go through an MRI and other tests to rule out other disorders, but it's worth it to get a true diagnosis.  Without that, you can't get the meds you need to abort, prevent, etc.
 
Best of luck and PF wishes.  Keep us informed!
 
Kris
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scrapinby
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Re: Newb from Michigan
« Reply #6 on: Aug 3rd, 2005, 7:56am »
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Thanks for the warm welcome.  I started keeping a diary on Tuesday.  I have already went to the hospital to have my medical records sent to the neuro's office.  I have no doubt that this is what has been bothering me for the last three weeks.  I have spent hours reading this site to try to get a little more info on what I can do to make this more tollerable.  
 
For some good news- I slept through the night last night for the first time in at least a week!  Hopefully tonight will be smooth sailing as well.
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Re: Newb from Michigan
« Reply #7 on: Aug 3rd, 2005, 9:45am »
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Be sure to let us know how your appointment goes.  
 
Good Luck
 
Tom
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Re: Newb from Michigan
« Reply #8 on: Aug 3rd, 2005, 11:12am »
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Hang in there.... sorry for the runaround... it seems to be a part of the job...  I feel bad that you have been selected by the HA demon....  Keep us posted on your results...
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Re: Newb from Michigan
« Reply #9 on: Aug 3rd, 2005, 11:04pm »
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Welcome aboard looks like all the good advice has been dispensed already. Keep in touch and let us know how it goes. smokin
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scrapinby
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Re: Newb from Michigan
« Reply #10 on: Aug 4th, 2005, 4:53pm »
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UPDATE
 
Last night the beast dragged me out of bed twice, for a total of 2 hours (the first one was pretty tame).  
 
Went to the Nuero today and he agreed that it looks like cluster headaches.  He gave me a script for Depakote ER 500mg to take at night before bed (one a night for the first week, 2 a night thereafter),  Imitrex nasal spray (20mg, at $20 co-pay per 6 doses this could get expensive quick), and I talked him into writing the script for O2 (I'm supposed to have prior permission from my insurance company, I'm willing to bet they'll pay if it works considering the alternative).  
 
I owe everyone a big thank you.  Without your knowledge of what works and what doesn't I would have left the Nuero's office with a script for Depakote and Imitrex tablets.  
 
Thanks,
Mike
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Re: Newb from Michigan
« Reply #11 on: Aug 4th, 2005, 8:41pm »
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And one more thing that has been bothering me.  I was told that if my insurance chooses not to pay for my O2, I will be responsible for the charges.  I was told that I could go ahead and take it today, but my insurance may or may not pay for it.  If they choose not to pay, I have to pay $15.00 for the tank, and $80.00 for a month of rental of the regulator.  $80 freakin bucks to rent the regulator.  When I was checking out I found out that my co-pay is 10% of the total bill.  $80.00 + $15.00 = $95.00 x 10% is $9.50 you would think.  No, the insurance company has a maximum amount they will pay, so my 10% comes to $4.35.  I'm all about the $5.00 savings, but it seams like a sham to me that if I have to pay for it out of my pocket it is $95.00, but if the insurance pays for it, the cost is $43.50.  I found brand new regulators on ebay for anywhere from $5.00 to $15.00 that would do just fine.  I'm buying my own regulator if this O2 works for me.  If my insurance doesn't cover the cost, I'll make up the cost of the regulator within a week.  If my insurance does cover the cost, I'll screw the O2 supply place that is trying to screw me.  I think the way these people pray on people in need is deplorable.
« Last Edit: Aug 4th, 2005, 8:45pm by scrapinby » IP Logged
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Re: Newb from Michigan
« Reply #12 on: Aug 5th, 2005, 12:39pm »
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Welcome Mike
 
Glad that you were able to find us.  Sorry that you needed to though.
 
A lot of people will tell you about welders O2 if the insurance doesn't cover it.  Most say that it is as good as medical grade O2.  I am sure someone will be along to explain it to you.  
 
Glad that you finally got some answers and some meds on board to help..
 
PF wishes and Vibes....Kim
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