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        Cluster Headache Help and Support >> Getting to Know Ya >> How do I convince my doctor?
        
(Message started by: aedria on Nov 26^th, 2007, 10:32am)

Title: How do I convince my doctor?
Post by aedria on Nov 26^th, 2007, 10:32am

Hello, I'm Aedria. I've been suffering from severe and debilitating headaches for much of my life. I have been told they are migraines, I've been given sinus medicine. I've been told it's psychological and been put on antidepressants. I've come to a point where the doctors just disregard my descriptions, tell me I'm just under too much stress. I'm tired.

My headaches fit the description of cluster headaches to a t. I get headaches that start in the night, or just out of the blue, and they're always one sided, always around my eye and always last two or three hours and then just go. They come back over a course of four or five days and then I'm headache free sometimes for two or three weeks. Absolutely NOTHING helps. I take so much ibuprofin and tylenol it's rediculous. Even narcotic pain relievers are a joke.

What do I say to a doctor who believes cluster headaches are only for men? How do I show the doctor that these are very real and they debilitate my life to such a point that my family suffers too? I have seven kids, these need to stop! (I am just starting to feel better after a spell this morning, it's been going on for three days now). I've been blacklisted by my doctor's office for narcotic pain relievers because of this problem and so they just seem to think I'm out for drugs (which I'm not, if I wanted narcotics I'd rather go to my street corner pharmacist than ask another doctor!) Thank you all for any input.

Title: Re: How do I convince my doctor?
Post by Ray on Nov 26^th, 2007, 10:43am

Welcome Aedria:

I have a couple of links for you from the OUCH website:

http://www.ouch-us.org/chinfo1.htm

http://www.ouch-us.org/chgeneral/doctors.htm

In Oklahoma City, the following doctor has been recommended by other cluster headache sufferers:

Dr. Marc Lenaerts
OU Medical Center
Oklahoma City

Please check out these pages and read and study. It really sounds like you might want to change doctors, since they don't seem to want to believe you and work with you.

Wishing you quick relief,

Ray

Title: Re: How do I convince my doctor?
Post by aedria on Nov 26^th, 2007, 10:44am

Thank you so much for the doctor's names, I will check this out today, wow- light at the end of the tunnel....

Title: Re: How do I convince my doctor?
Post by brewcrew on Nov 26^th, 2007, 11:04am

on 11/26/07 at 10:32:01, aedria wrote:

What do I say to a doctor who believes cluster headaches are only for men?

You're fired.

Title: Re: How do I convince my doctor?
Post by Ray on Nov 26^th, 2007, 11:11am

on 11/26/07 at 11:04:19, brewcrew wrote:

You're fired.

That's the "G" rated version. I can think of a few colorful remarks to add to that.

With regards,

Ray

Title: Re: How do I convince my doctor?
Post by Guiseppi on Nov 26^th, 2007, 11:28am

Awesome job Ray....one more example of why this board is so popular, it works!

You're fired was awfully polite.... ::)

Guiseppi

Title: Re: How do I convince my doctor?
Post by RichardN on Nov 26^th, 2007, 11:33am

Hi and Welcome

Start a journal today! Note the time of day, duration of attack and Kip (pain) level (see "the kip scale" . . . link on left). Keep this as accurate as possible, and take it AND a copy of the Kip scale with you when you go to see your next doc . . . .drop the jerk you're seeing now as he's obviously not convinced you have a "real" problem.

Read, read, read . . . . there's much information on this board re preventives, abortives (I use 02), different aids and methods of easing the hits . . . especially since you haven't mentioned anything that appears to have worked for you.

You may have more than one thing going on in your head. Many here suffer CH AND migrains and other types of head-related pain. You really need to see a headache specialist (and I hope Ray's doc works out and you can get an appointment as soon as possible)

Be Safe, PFDANs

Richard

Title: Re: How do I convince my doctor?
Post by Ray on Nov 26^th, 2007, 11:42am

Another comment to add:

Often times, headache specialists are booked months in advance. If you tell the office staff that you [probably?] have cluster headaches, and you need to be seen as quickly as possible, they will often keep you on a short list if there are any cancellations.

Be persistent and polite on the phone, they will get you in there!

With regards,

Ray

Title: Re: How do I convince my doctor?
Post by Chappy on Dec 17^th, 2007, 11:15pm

Aedria,

Ditto to what everyone said. Fire that doc fast, and with prejudice.

Second, setup appointments with multiple neuros if necessary, and ask to be put on waiting lists. Third, the headache log is absolutely necessary, and led to my diagnosis in a single visit after 8 years of suffering and countless doctor visits (including psychiatrists and psychologists). I used my iPhone to log date, time, level of pain, and details of pain every time it changed throughout the day. After a few weeks I had 9 pages in fine print. The neuro took 20 minutes to come into the room, said he was "very impressed" with my log, asked me more detailed questions than any precious doc had, diagnosed me with chronic ch, and prescribed my initial course of treatments. That was 10 days ago, and my life is already better.

Title: Re: How do I convince my doctor?
Post by Johnny on Dec 18^th, 2007, 1:21am

Hey everyone. Yep I'm new here.
I was reading on this forum somewhere that if the Neuro gives you any kind of Narcotics you can go from Episodic to Chronic? Is that true? I was using Stadol NS and it worked...for awhile and now it doesn't work. The doc just called me in a Rx for me to get tomorrow of Vicodin along with uping my dose of Verapamil 120mg to 240mg. I'm episodic right now. I've had these CH since the age of 17. Started out doc's thought it was sinus too like I see alot of people say. Had the MRI's and all the usual stuff I basically have the same story and ultimately the same $@%*ty thing called CH! ;;D
I'm 27 and a smoker, so I know...Quit Smoking! But even if I did... would it help? As far as less headaches, less pain? (Yeah I know more than one question.) And O2, and being a smoker? just not smoking inside.

Title: Re: How do I convince my doctor?
Post by MJ on Dec 18^th, 2007, 1:23am

on 11/26/07 at 11:04:19, brewcrew wrote:

You're fired.

Agreed.

Wether you have clusters or not the docs diligence and education from the university of Tristan da Cunha is showing through.

Title: Re: How do I convince my doctor?
Post by MJ on Dec 18^th, 2007, 1:44am

on 12/18/07 at 01:21:12, Johnny wrote:

I was reading on this forum somewhere that if the Neuro gives you any kind of Narcotics you can go from Episodic to Chronic? Is that true?

I'm 27 and a smoker, so I know...Quit Smoking! But even if I did... would it help?

Johnny

I dont think narcotics have caused anyone to go chronic.

For most They can cause the pain to be greater and prolong both the hits and possibly the cycles as well as cause an increase in frequency of a hit.

They may help a very, very small percentage of clusterheads but reading here its rare.
For some narcotics can take the edge off the pain but the before mentioned happens. Narcotics are NOT a reccomended treatment.

Smoking probably wont make a difference on CH.

Title: Re: How do I convince my doctor?
Post by Johnny on Dec 18^th, 2007, 1:52am

Well I guess I'll find out if I'm a rare case tomorrow night. Seems I'll probably have one tonight at 4:30am and on to 7:30am. I'm still wondering about 02. Seems my doc is wanting to try other things before giving me the Rx to have it. I've even printed out the info from OUCH and from here and gave it to him. Seems he's waiting for something. But I guess I'll have to wait till my next visit or the next couple days and see what the Vicodin does, if it works great! If not, he WILL hear from me again before my visit. ;;D

Title: Re: How do I convince my doctor?
Post by Chappy on Dec 18^th, 2007, 4:31am

on 12/18/07 at 01:21:12, Johnny wrote:

Hey everyone. Yep I'm new here.
I was reading on this forum somewhere that if the Neuro gives you any kind of Narcotics you can go from Episodic to Chronic? Is that true?

Sorry, Johnny - I'm 99% sure you read my very first newbie post. This is a bit off topic for this thread, so I figured I'd start a new topic elsewhere, since I'm interested in what other chronics or medical professionals might have to say on the subject. I really don't know, and you shouldn't take my word for it. Read my post here, and at least take what I have to say into consideration before trying the narcotics:
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1197969234

Seriously, I wouldn't go down the Vicodin road again, although I do sometimes miss the few hours of pain free energy they would give me. Overall, though, I'm glad I'm past that stage, and if I had a time machine I'd give myself the same advice I'll give you: skip it.

Title: Re: How do I convince my doctor?
Post by Bob_Johnson on Dec 19^th, 2007, 11:21am

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. http://www.achenet.org On-line screen to find a physician.

5. http://www.headaches.org/consumer/index.html 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.

Title: Re: How do I convince my doctor?
Post by BarbaraD on Dec 23^rd, 2007, 6:56am

Johnny,

Narcs can cause REBOUND headaches and then you've got a whole NEW can of worms.

Imitrex or Ergotomine (vasoconstrictors) are the recommended drugs for CH. Read up on it and EDUCATE your doc.

Try chug-a lugging a can of Red Bull at the first sign of a headache. This sometimes aborts it without the drugs.

O2 has helped the majority of people here. For most of us it's our first line of defense. 15 liters with a non-rebrether mask (the one with the bag). I'm a smoker and I keep my O2 bottles handy - just don't smoke while the O2 is on ;;D. People get paranoid over nothing. I've had it around for years and as long as the bottle is turned off - it's not going to burn anything. Geezzz!

Melatonin at night (OTC med - vitamin isle) works well for some of us for the night-time hits. Gets us thru the REM sleep.

If you'll read this MB, you'll find that very few have been helped with narcs. These HA's just don't respond to them.

Hugs BD

Title: Re: How do I convince my doctor?
Post by outofcommission on Jan 15^th, 2008, 3:05am

i would get another doctor. explaining a ch to a doctor is a pain in the butt. i don't think narcs are the answer. i took alot of ibuprofen and aprin during my last cycle and this seemed to intensify my peeks. tylonol and cold air work as a good pm for me. try not to overdo things because your head is on fire. o2 works really good as an abortive for me. sometimes nothing works.

Title: Re: How do I convince my doctor?
Post by imfareware on Jan 15^th, 2008, 12:37pm

on 12/18/07 at 01:21:12, Johnny wrote:

Hello Johnny, I've had these CH for quite some time now, I use to love a cigarette and a cup of coffee when the attack would happen, it seemed to help alieviate them. I quit smoking 8 years ago and I still get them, I just wish I had a cigarette.