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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> doc..... the rest of the story 
        
(Message started by: JenniferD on Aug 22^nd, 2007, 5:50pm)

Title: doc..... the rest of the story
Post by JenniferD on Aug 22^nd, 2007, 5:50pm

When I met with Dr. Hernandez, I told him straight away that I'd already met with Dr. Williams and that his denial of the o2 script needed a 2nd opinion.

Dr. Hernandez told me that the ONLY time he'd ever prescribed o2 was "many years ago" before they knew how much it helped and the only way to administer was hyperbaric chamber! Then years later they tried the nasal canula (sp?) and that was ineffective so he's not prescribed it since.

He was UNCOMFORTABLE with writing it and went to check with the resident neurologist- this is the same neuro that I have an appt with in Nov, I might add-

And the neuro says this...............are ya ready??????

"I've never seen a woman with CH, but I've heard they can, although its rare. Its a man's disease." WTF????

He did ok writing the script though with the comment, "lets give it a try and see if it works". WTF???

I am shocked at the lack of knowledge by the docs in my area!!!! Even the neuro, who is supposed to be treating CH patients is still stuck in the dark ages about this "man's disease" ?????????

Dr. Hernandez did seem genuinely embarrassed that I knew more about CH than he did, and I told him I'd send him information. He readily accepted the offer.
I left him with the OUCH pamphlet from the convention and told him that a good source of info for him would be to contact Dr. Pugash (my freakin puter went down this am and I couldn't access it!)

This whole experience really has me thinking about what I can do to help.

Title: Re: doc..... the rest of the story
Post by HeadhurtinMama on Aug 22^nd, 2007, 7:15pm

That is horrible!!! Sorry this is the kind of help available in your area. I am so shocked to see that everyone has such a hard time getting O2. That was the first thing my neuro did for me. At least you are getting somewhere and have a doc that is willing to learn and better himself to suit your needs. Best of lucK!

Bridget

Title: Re: doc..... the rest of the story
Post by Wayne on Aug 23^rd, 2007, 3:28am

I carry around a whole lot of info printed from this site and everytime I encounter a pharmacist or doctor who gives me the blank look when I talk about CH I give them a copy. I figure education is sadly lacking and that there are many CH sufferers out there being treated for sinus etc because the medical proffession is largely ignorant of the symptoms associated with the condition. If this can assist in even one correct diagnoses it will be worth it. Interestingly I got a call from a bloke last week who was referred to me by a pharamacist, I can't diagnose, obviously, but I could refer him to a competent neuro who can.

Title: Re: doc..... the rest of the story
Post by JenniferD on Aug 23^rd, 2007, 5:51am

That's awesome wayne. Unfortunately, that one pamphlet was the only thing I had on me at the time but I'll definitely have more.

I had a pharmacist who kept trying to lecture me on lifestyle changes to get my blood pressure down. Each time I'd try to explain, he'd interrupt with another way to relax, yada yada yada.

I was getting my verap filled ::)

Title: Re: doc..... the rest of the story
Post by Karla on Aug 23^rd, 2007, 7:04am

Jen, I am so sorry that you are going through all this. However it is a very possitive thing that your dr is willing to admit that you know more than he does and is willing to learn. Sounds like there is hope for him yet.

Title: Re: doc..... the rest of the story
Post by barry_sword on Aug 23^rd, 2007, 7:12am

Jen, how about you video tape your next hit and take that to him to see. Maybe that will open his friggin eyes!

I really lucked out finding the right neuro as quickly as I did and feel for you's that are still searching for an educated Doc that knows CH"s.

Good to hear you got o2 and hope it works for you.
Take care,

Barry

Title: Re: doc..... the rest of the story
Post by Brewcrew on Aug 23^rd, 2007, 7:19am

Jen,

Sounds to me like the frontier of medicine in that area consists of applying leeches to your forehead to cure you of the vapors.

Print all the O2 stuff out (inlcuding the new O2 user's guide put together by Michael, Batch, and Annette) and stick it up their collective asses sideways until you've got their attention. If that don't work, keep looking. This is appalling.

If necessary, have them consult with my neuro. I'd be happy to PM you his number.

Bill

Title: Re: doc..... the rest of the story
Post by DennisM1045 on Aug 23^rd, 2007, 7:48am

While the Drs in your area are woefully out of touch with proper CH treatment I don't see this as negative. You got their attention, got them to recognize that you understood more then they did and came away with an O2 script! That's awesome!

Now, follow that success up with a rain of info so they can continue to help you find the right treatment plan.

This is a great example of how to work with physicians. Way to go Jen! I hope the O2 brings you relief.

-Dennis-

Title: Re: doc..... the rest of the story
Post by Bob_Johnson on Aug 23^rd, 2007, 8:35am

If you live in a large city and look at the yellow page specialty listings for M.D.s you get some sense of just how much medical knowledge has emerged in the last century. It is simply impossible for any doc to know it all. Even within some specialty areas there are sub-specialties, and sub-sub-specialties--all bearing witness to the fact that no one doc can know about all problems which he may see.

Even neurologists may go for years without see a CH problem: keep in mind that we are a distinctly small group of headache patients. This is why you keep seeing messages here advising folks to ask about a doc's experience, to look for a specialty practice/clinic. For those of us who don't have access to such choices, we are left to finding a doc who will work with us, someone who is willing to learn from the patient. Then we have a chance.

I was blessed with such an internist, with a specialty practice very distant from headache. But he would accept medical literature from me, let me guide my own treatment and then--when I left the area two-years ago--wrote the most touching letter thanking me for teaching him so much! That all of us should be so blessed.....

Bottom line: anger doesn't get you good care. Put that energy in a good search....
----------
Headache. 2000 Oct;40(9):730-5.

The misdiagnosis of cluster headache: a nonclinic, population-based, Internet survey.

Klapper JA, Klapper A, Voss T.

Colorado Neurology and Headache Center, Denver 80218, USA.

OBJECTIVE: We conducted the first nonclinic, Internet-based survey of cluster headache to investigate this population with regard to diagnostic problems encountered, effective and ineffective medications, problems obtaining medications through third-party payers, and symptoms as they relate to International Headache Society criteria. BACKGROUND: Previous cluster headache surveys have been at specialty centers. These patients might be different from cluster headache sufferers in the general population. An Internet-based population of cluster headache sufferers who connected to a Web site responded to the questionnaire, and e-mailed it back to our site to be analyzed. We analyzed a total of 789 respondents, 76% men and 28% women. RESULTS: Eighty-seven percent of respondents qualified as having cluster headache according to International Headache Society criteria. However, diagnosis was delayed an average of 6.6 years from the onset of symptoms. The average number of physicians seen before the correct diagnosis was made was 4.3, and the average number of incorrect diagnoses was 3.9. Seventy-one percent of respondents had undergone unnecessary magnetic resonance or computed tomography scans, and 4% had unnecessary sinus or deviated septum surgery. We found that many inappropriate medications such as propranolol, amitriptyline, and antibiotics were prescribed and that successful medications for clusters such as sumatriptan and oxygen were often denied due to a failure to understand the nature of this disorder. Seventy-seven percent of respondents were smokers. Seventy-four percent stopped smoking in an attempt to improve their condition; however, only 3% experienced relief. CONCLUSIONS: The most alarming finding was the delay in diagnosing cluster headache in this population--an average of 6.6 years. The selection of medications demonstrated to be successful in the treatment of clusters proved effective for the majority of this population. Many respondents reported being denied some of these effective medications by their physicians or third-party payers. Using International Headache Society criteria for cluster headache, 87% of the respondents should have been correctly diagnosed by the first physician seen.

PMID: 11091291

Title: Re: doc..... the rest of the story
Post by JenniferD on Aug 23^rd, 2007, 10:16am

Thanks for the GREAT info Bob!

It really wasn't anger at the situation. As I said it was more a shock to realize that my doc and the neuro I was to see in Nov were less than adequately informed.

I guess I just assumed that because he's treated me for several cycles, my doc just knew a lot more about it. He did say, then corrected himself immediately, that he hasn't been properly trained in CH.

And you're absolutely right: better research on my part is a must!

All the best,
Jen

Title: Re: doc..... the rest of the story
Post by TomM on Aug 23^rd, 2007, 10:49am

on 08/22/07 at 17:50:08, JenniferD wrote:

"I've never seen a woman with CH, but I've heard they can, although its rare. Its a man's disease." WTF????
This whole experience really has me thinking about what I can do to help.

I am surprised he is still alive.
I get tired of having to explain details to docs/coworkers/freind/family. Especially docs. I would find one that works. Jen, Georgetown Univeristy Hospital has a HA clinic if you are willing to travel. I can give you pointers about the place, since that is where I go and a roof over your head if you come up. No strings attached on the roof thing, either.
http://www.georgetownuniversityhospital.org/body.cfm?id=416
My Director of HR here @ work goes to Dr. Philip Pulaski who is also in DC. She reccomended him to me but I never went. She sufferes from migraines knows how I suffer from CH. I took 5 weeks medical leave this summer during my cylce because the firm could not accomodate me and give me an office. Anywho, if you want his info contact me off-line.

TomM

Title: Re: doc..... the rest of the story
Post by luveemom on Aug 23^rd, 2007, 10:56am

Hey Jen,
Glad to hear you got your O2.....But a little pissed that he said it is "a man's disease"........It is predominately seen in men, but that doesn't translate into women don't get it.......sometimes ingnorance from such "intelligent" people really annoys me, but I am happy your overall outcome was a positive one and your goal was accomplished!!

PF Wishes
Alicia

Title: Re: doc..... the rest of the story
Post by Wayne on Aug 24^th, 2007, 2:37pm

on 08/23/07 at 05:51:59, JenniferD wrote:

I had a pharmacist who kept trying to lecture me on lifestyle changes to get my blood pressure down. Each time I'd try to explain, he'd interrupt with another way to relax, yada yada yada.

I was getting my verap filled ::)

I so getcha Jennifer, a very similar thing happened to me which is why I started carrying the info around.

Title: Re: doc..... the rest of the story
Post by Brewcrew on Aug 24^th, 2007, 3:29pm

Blueball is a man's disease, too.

Did ya kick him hard enough for him to figure that one out on his own? :o

Title: Re: doc..... the rest of the story
Post by gore2424 on Aug 24^th, 2007, 7:15pm

sorry Jen hope you getting all the help now you need and I agree to carry any news to any Dr or Neuro in case they need informed better I am lucky cause I have had a great neuro for now over 4 years and had him before that but had to change once when he was my on my plan all good here now Terry

Title: Re: doc..... the rest of the story
Post by Guiseppi on Aug 25^th, 2007, 6:49pm

I actually had a great neuro and a nurse practitioner who did a good job of listening to me. But since I am a Kaiser patient, I still had to go to a head ache clinic before I could be treated. They stressed that I needed to lose weight, (don't need to) stop smoking, ( I don't), learn to relax, (most people think I'm sleep walking!!!) and on and on and on.

When they don't know what they're talking about, they fall back on ancient wisdom!! (Although I did agree with the statement it's a man's disease, you girls have gotta stop with this faking it business!!!)

Bob said it best, information is our best ammunition! Hang in there kid.

Guiseppi

Title: Re: doc..... the rest of the story
Post by purpleydog on Aug 26^th, 2007, 7:34am

on 08/24/07 at 15:29:41, Brewcrew wrote:

Blueball is a man's disease, too.

Did ya kick him hard enough for him to figure that one out on his own? :o

[smiley=laugh.gif]

Docs are not infallible, but some are just pure raging idiots, with their minds set firmly in the 18th century. Men's disease my ass.

Shut up Chuck. ;)

Title: Re: doc..... the rest of the story
Post by Brewcrew on Aug 26^th, 2007, 8:05pm

'Bout time somebody caught that one.

Good job, Chris.

Title: Re: doc..... the rest of the story
Post by chewy on Aug 26^th, 2007, 8:24pm

Quote:

Its a man's disease." WTF????

If thats true then I'm going under the knife.

I'm off to Filene's Basement!