Well, my appt w PCP was at 1pm and it was a disaster.  For reasons I do not really understand, the 2-3pm headache popped up early and by the time the doctor walked in it was wickedly kicking my head in and on the right side which it has never done before.  It's always been on the left.  So I am pacing and wild and the doc is taken back immediately. 

I ask for the O2 prescription and he tells me that's not gonna happen.  He keeps trying to push drugs. I tell him I don't want them and haven't taken regularly prescribed drugs for a while.  He refused to read any information I brought with me about cluster headaches from online and told me I was not to give him medical advice that was his job.  He suggests that I have taken medication that the ER doled out for these headaches.  I told him when you're in this much pain you do anything to stop it but I still have a right to choose the treatment I prefer and that obviously it is a recommended treatment or the ER wouldn't have given it to me. 

Meanwhile, I want to rip his head off along with mine.  I can't cope.  I finally yelled at him that he wasn't listening to me and that I was in too much pain to have a flipping argument with him about semantics just because he felt threatened.

This headache was shorter than the others, too.  It suddenly ended maybe 20-30 minutes in to the appt which was probably 45 minutes after it started.  What he did next blew my mind.  When I am in apparent agony, he is distant and argumentative, but when I'm sitting there dazed after it stops, is when he starts being nice and trying to be helpful. 

Suddenly, its like he believes me now.  Still refused to give me the O2.  Said he referred me to Neurology and they might.  I have a brain scan set for Monday and see neuro within 2 weeks.

In the meantime, I have 2 prescriptions, one for Indomethacin which he says is standard for cluster headaches not O2, and one to stop me from throwing up the Indomethacin.  I'm supposed to wait 30 minutes between them which means the headache could be over or ending before I can take the prescription to help with the pain.  Granted most of them are much longer than the one today.  I just thought that it was ironic that the standard treatment doesn't account for that possibility.  But then again, I'm having a hard time understanding the logic behind anything that happened today.
Exhausted and discouraged, GG

Don't waste any more time and frustration!

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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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.

Found a headache doc from your information.  He won't accept me without a referral, but per the receptionist, any local ER other than the VA will provide one.  That's easy enough to procure as I get three chances a day to go to the ER these days.  I should be able to get a referral soon.  I'll happily cancel the appts with VA as soon as I have a backup.  Thanks, GG

Genna,
 
Sorry to hear about your experience with your PCP - that sucks big time.
 
If you're dead set on getting O2, you can rig up your own welding tank pretty easily and cheaply. 
 
I did it earlier this summer for under $200 and I have all of the mechanical aptitude of your average sea slug.
 
This link has instructions and photos on how to do it: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE .  If you run into issues, there are tons of people on this message board that will help you.

Good luck!
-Ken

Do you know what car he drives?

...sharing empathetic thoughts  >:(

No but that made me laugh and the next headache started building so that's good.  I got like what 5-10 minutes.  I hate this part.  What kind of jerk is more interested in when the pain stops than when you have it?  Don't think that's a person cut out for a compassionate field of work.  GG :-/ :'(

Oh and I'm a lefty again... from a scientific curiosity standpoint that is just wild.  Left left left right left. :o

That was my goal, to make you laugh!

Hope you get success elsewhere.  "Keep throwing darts at the wall and something will stick".

Don't give up looking for a good specialist and in the meantime, you might consider RedBull, welders o2, the Vitamin D3 regimen, melatonin, etc.

You're still not diagnosed though.

        Potter

Nope, but you know how those doctor types like to drag things out... why do in one visit what you can do in 20 when you get paid by the visit. 

Got my referral to the headache specialist from ER.  Gonna try to sleep before next headache stops in for special torturous fun.  Yehaw!   :D GG

GennaG wrote on Aug 24^th, 2011 at 2:53pm:

I finally yelled at him that he wasn't listening to me and that I was in too much pain to have a flipping argument with him about semantics just because he felt threatened.

Good for you!  Seems like some doctors really only respond to being yelled at.  Go figure.  I guess it's one of the easier ways of telling that you need a new Doc.  :) 

I remember one time when my regular Doc wasn't in and I saw another at the same practice--She started telling me that I didn't have clusters because they were so rare, then told me that all she was going to do was prescribe me barbituates and tried to walk out the room.  Me saying very very loudly, "I pay your salary, you are practically my employee and you are going to listen to me"  got her to turn around and listen pretty quick. :)

At least you've got a neuro appointment now, hopeully he won't be such a schmuck.  And as far as you "not having a diagnosis", Would you really want one from a guy this dumb?

The best of luck!  Even if you're just in the first few steps, you're getting there!

-Ricardo

Ricardo is right. It's so damned hard to be patient and logical when you're getting your butt kicked by the beast. The time you put into establishing a relationship with a doctor now is so worth it. I stay in touch with my neuro on or off cycle. When a cycle starts, I have 2 phone  umbers I call. Full E-Tanks are delivered to my home, prescriptions are called into my local pharmacy, and I have an appointment with my neuro.

I shudder to think of all of the similar appointments I had in the early days of my diagnosis. Fiorinal, Vicodain, Percocet, Midrin, Lidocain Drops, Oral Cafergot, .........trying to rush me out of the exam room, never LISTENING to me. Hang in there, get a RELATIONSHIP established with a neuro you can talk to. It's so worth the effort.

Joe

Trying to remember if I was nuts enough to pray for patience at some point previously because I'm getting taught it whether I meant it or not.  Appt with Headache Specialist set for Sept 8th at 8am.  Nothing sooner.  I think I can make it two weeks.  I think I can I think I can I think I can, besides what's the alternative?  None I can see right off.

We interrupt this broadcast with an emergency beep which says is almost time for headache to commence. LOL  The GG show will return shortly after these messages.   :D If I lose my sense of humor I might not have anything left.  GG

Your doc sucks.  Indomethacin is standard for paroxysmal hemicrania not CH!

So I hear.  Government issued healthcare at its finest, right?  But people are always telling me how I have the best healthcare in the world thanks to my veteran status.  LOL People would kill for what I get for free.  That one really makes me smile because apparently you have to be willing to kill to qualify.  Sorry so bitter.  I think I'm depressed. GG

Hi GG,
You have many peple on this site that have contributed so much valuable info with current postings and archives.  So many documents as it relates to everything and anything to do with XCH's available to you.

The doctor will most likely not know as much as us on this site, so do yourself a favor and educate yourself every chance you get. 

Some things that come to mind, just rambling and hope what i'm about to write is of some benefit for you, take it for what it's worth, I only with you well....

Have you tried RedBull or other energy drinks containing 1000mg of Taurine and at least 80mg of Caffeine?

Have you tried a frozen bag of peas applied to the back of the neck or forehead?

Have you tried a hot shower or cold shower?

Have you tried sticking your face in front of your A/C in your vehicle while the fan is on full speed at coldest setting?

Have you tried the regimen outlined in the thread titled "123 days..."?

Have you tried Melatonin for night time hits?

Have you printed off the O2 info AND Tryptamine based meds (Imitrex injections-NOT pills or nasal spray) for your 9/8th visit AND delivered it (in person, email, fax) to your doctor to review BEFORE you get there on 9/8th?  Chances are the dr will not take the time to read while at your visit, so this is recommended to provide in advance.

Have you printed off info and delivered (in person, email, fax) to your doctor to review BEFORE you get there on 9/8th RE: A--Transitional Meds (such as a Prednisone taper) and B--Preventative Meds (such as Verapamil including higher than typical dosages)...this will be helpful along with the C--Abortive treatment info as stated above.

Do you understand the differences between Vasodilation and Vasoconstriction as it relates to CH's?

Are you avoiding known triggers such as drinking alcohol?

Have you become familiar with the Hypothalymus gland and Trigeminal nerve as it relates to CH's?

Are you keeping a headache diary?  Very important to document as much as you can to track and educate yourself such as what time of day/night you are attacked, exact start/end times, possible triggers, your diet, intensity of attack via the KIP scale, frequency/# of times per day/night you are hit, your diet, exercise or not, sleep, weather, what may have helped minimize pain and/or abort, etc?

Read as much as you can, ask as many questions you want to educate yourself on.  The more educated you are, the better you will help your doctor help you.  Chances are by the time 9/8th comes around, you will know more than your headache specialist.

We are here for your support, don't be shy  ;)

So Sorry you went through that!  I got really lucky about 5 years ago.  Went to the ER for a bad bad cluster, and got a doc who is also a sufferer!  Gave me a shot of Torodol (anti inflamatory) and a RX for the little vial of Toradol and suppositories for nausea.  The headache was gone in about 5-15 minutes.  Nausea was gone also.  I was euphoric!
He referred me to a neurologist (that treated him) and I was given an exam, but based on my description of pain (i.e; excruciating pain not relieved by oxycontin, percocet etc., neck and shoulder (l) sided, burning, boreing pain in and behind left eye.)  Other than the Torodol inj. I find that neurontin helps prevent or delay onset and pain is less.  I took Topimax for about a year and the headaches almost stopped, but I ended up with acute narrow angle glacoma in my left eye. almost became blind in that eye.  I was later told this is a "under reported" side effect.  Hope this helps.

FYI for GG,
Although there may be rare exceptions, typically narcotics and also OTC pain relievers are of no use to relieving CH pain and often will create rebound HA's.