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        Cluster Headache Help and Support >> Cluster Headache Specific >> A rant about my doctor (should that be dick-tor?)
        
(Message started by: Emily on Nov 6^th, 2007, 7:26am)

Title: A rant about my doctor (should that be dick-tor?)
Post by Emily on Nov 6^th, 2007, 7:26am

This morning I had an apppointment with my doctor to decide where to go next as the indomethacin didn't work. I felt good as I slept all night (thanks to Mr Nytol) and had lots of printouts with me. My mission:

1.) To get a non-rebreather mask and a portable o2 tank

2.) To get a new preventative

3.) To find out about melatonin (as per previous post)

Before starting on the rant about this morning, I should explain that I paid privately to see a neuro, who then sent all his recommendations to my NHS doc surgery so I could get my treatment free. My nice doc (let's call him Mr. O) agreed to this and had also agreed to do some research for me on meds.

When I got there this morning, Dr O wasn't in. There was someone else. 'Phew', I thought. 'Thank god I've brought all my print outs!'.

But no...

When I entered the room, he (let's call him Dr Evil) was reading my file. I didn't even sit down in the chair before he started a full blown attack on the use of o2 against cluster headaches and how there has just been some studies published (despite MY evidence claiming otherwise).

Then, when I said I didn't want to take the indo as I was getting hit on top of extreme nausea and dizziness, he said it was because I hadn't got up to the full 200mg dose (I'd got up to 100mg). If I'd been able to stand up straight long enough to get to my meds and then to the tap for some water, perhaps I could have increased my dose and lived in a permanent 'crazy kitchen' world forever! [smiley=gocrazy.gif]

Dr Evil went on to read through the list of other preventatives my neuro had suggested - Pred, Verapimil, Lithium and Methygrsomething or other...

He basically slated every drug, claiming that he would never prescribe any of these (clearly he knows nothing). I then started to test him a little - 'Tell me more about these drugs' I asked. He knew nothing. Fuck all. I knew more - thanks to you guys.

Because Pred was no2 on the list, he decided to prescribe that, but not without a HUGE song and dance. 'You're going to have to take 16 tablets a day', 'You're going to put on a ton of weight', 'if you cuoldn't handle the indo, the pred is going to ruin your stomach'. And on and on and on...

So I said what about one of the others? 'No, no, no!' exclaimed Dr Evil. The neuro wrote them in the order for a reason and Dr Evil isn't willing to run the risk of prescribing verap without knowing if it's licenced for ch as it then become his problem. Pred is the only thing.

When I mentioned melatonin, he damn near hit the roof! I thought my first aid skills were going to get some use. His voice had almost reached shouting level by this point.

As I left, he thrust the prescription into my hand and said 'enjoy buying a bigger wardrobe' and shut the door behind me. :o

I walked about 10 steps before I burst in to tears. I ended up getting the receptionist to fill in the HOOF to get my extra o2 bits and pieces and told them Dr Evil said so. I also booked an appointment with Dr O (the nice man) for 4 weeks time just in case the pred didn't work.

I cried all the way home, through my mid-morning snack (might as well start the weight gain with a bang) and to my PC. [smiley=bigcry.gif]

I've now finished this and am laughing a little because I now realise how LUDICROUS this is!

I also feel better for getting it off my chest.

Thanks for reading.
Em

Title: Re: A rant about my doctor (should that be dick-to
Post by midwestbeth on Nov 6^th, 2007, 8:37am

Em,

That Dr. was an ass. Too many people on this board, including myself, have unfortunately experienced similar treatment at the Dr's office.

I don't know much about healthcare on your side of the pond, but please do not give up searching for the proper treatment that you deserve. There are good Dr's out there.

Hugs,
Beth

Title: Re: A rant about my doctor (should that be dick-to
Post by black on Nov 6^th, 2007, 9:01am

Quote:

When I mentioned melatonin, he damn near hit the roof! I thought my first aid skills were going to get some use. His voice had almost reached shouting level by this point.

sorry u had to go through this. :-/

Title: Re: A rant about my doctor (should that be dick-to
Post by George_J on Nov 6^th, 2007, 10:10am

http://wow.allakhazam.com/images/mobs/1449-witchdoctorunbagwa.jpg

Hope you can get in to see Dr. O soon.

We all run into these arrogant, know-nothing pukes. Who knows where they come from?

Just remember--when you hear them pontificate and rant in their ignorance, it's simply a "tale told by an idiot, full of sound and fury, signifying nothing" .

Forget him.

Best wishes,

George

Title: Re: A rant about my doctor (should that be dick-to
Post by sandie99 on Nov 6^th, 2007, 10:24am

Em,

I'm so sorry that you had to come across a doc like that... [smiley=hug.gif]

I really, really want to slap that Dr Evil! >:( Another living proof that there's still a lot of educating left to do....

I'm glad that you're already feeling better! :)

Lots of hugs,
Sanna

Title: Re: A rant about my doctor (should that be dick-to
Post by Garys_Girl on Nov 6^th, 2007, 11:43am

I am so sorry you had to suffer through that! He was a total ass, and unfortunately, there are lots of them out there.

Schedule an appointment long enough ahead of time (before needing new meds) that if you wind up with Dr. Evil instead of Dr. O, you can thank him for his time, but you'd rather see someone willing to take advice from someone more current on the research available on treating cluster headaches.

The hardest part is when you're so desperate for some relief that you have to suffer through jerks like that instead of just being able to blow them off entirely.

(((((((((((((((hugs)))))))))))))

Laurie

Title: Re: A rant about my doctor (should that be dick-to
Post by starlight on Nov 6^th, 2007, 1:39pm

Emily,

Here's my advice to you: The doctor you saw (Dr. Evil) is one of a bunch of docs who doesn't want to prescribe O2 and makes up some weird reason why not to. Go figure. Then, after refusing their patient what would really help them they throw a hissy fit about the other med options.
Listen, call the neuro you saw and ask him to prescribe O2. Or call the nice doc you saw and ask him to prescribe O2. Believe me, it works! If those 2 won't give it to you for some reason, switch doctors and ask the new doctor. It's your health, and they are working for you--NOT the other way around. Basically don't take no for an answer if you want O2. Also ask the neuro to prescribe meds. Please bypass this Dr. Evil and call either the neuro or the nice doc. Don't wait a month. Star

Title: Re: A rant about my doctor (should that be dick-to
Post by SteveY on Nov 6^th, 2007, 2:03pm

Hi Emily.

Ask for the telephone number of your local PCT. (primary care trust)

Explain that the GP won't give you meds recommended by a consultant.

That will stir it up for Dr Evil. You have rights, correct medication is yours by law. (read NHS choices info)

http://www.nhs.uk/Pages/homepage.aspx

Then go kill the doc ;)

Let us know how you get on.

Steve

Title: Re: A rant about my doctor (should that be dick-to
Post by Bob_Johnson on Nov 6^th, 2007, 2:03pm

Your message hits my inbox this morning; NEWSWEEK arrives in the mail this afternoon with your answer! This from an article entitled, "Sorry, But I Can't Help You".

"He’s right about doctors. Jean Decety, a psychologist at the University of Chicago, compared a group of doctors with laypeople, watching a video of patients receiving a painflul acupuncture treatment. In the laypeople, parts of the brain associated with pain and with empathy were activated, but in doctors those circuits were suppressed, Decety found. Instead, they showed activity in areas associated with logical thinking. Decety said he wasn’t surprised by Davis’s experience.
“Doctors see people dying all the time,” he said, “and if they couldn’t modulate their emotions, they couldn’t get through the day.” So you may be smart enough to cure cancer, but first ask yourself: are you tough enough?"

NOVEMBER 12, 2007 I NEWSWEEK 21
________________________________

I was a hospital administrator early in life and know that medical people must protect themselves from endless pain, despair, etc. but it is sad when some of them carry the protecton to such an uncontrolled reflex that you get a doc like your's. Still, we know that the vast majority in medicine are there because they are good people who do care.

Title: Re: A rant about my doctor (should that be dick-to
Post by sldrswyfe on Nov 6^th, 2007, 3:10pm

Em...

That is the worst...I know.

I can't even tell you how many times a Dr. has told me "There's NO WAY you'll get oxygen, the insurance will NEVER pay for it"...as Im looking at two "M" tanks and four "E" tanks right now.

I had to really fight for the script...and do the legwork, make the phone calls myself, as the office refused to, and I believe some were dishonest, saying they did, but the insurance "refused"....

It's sad...we have to be sooo pro-active...and ignore the BIG JERK that said those cruel things to you.

Sherri

Title: Re: A rant about my doctor (should that be dick-to
Post by Emily on Nov 6^th, 2007, 3:47pm

Thanks for the messages folks. I already have o2, but it's with a regular mask and it's a giant tank, which doesn't help in work or when I go away for the weekend. The o2 isn't helping as much and I think it's probably more the mask than the treatment itself.

The fact that he ranted at me before I'd even sat down (without finding out my experience) just pissed me right off. This is the same doctor who signed off my o2 just a month ago. He was bad then too, but I must have been in a tougher frame of mind. What is funny is that a month ago, he lectured me about indo, but yet didn't give me anything to protect my stomach at the time. This week, he's chastising me for not taking it properly!

You just can't win.

App with Dr O is booked for beginning of Dec. That'll either be a new med or a repeat for the pred.

Thanks again. It's good to know (whilst a little scary) that it's not just my doc who's clueless.

Em

PS - If you've taken the pred (with good or bad experiences) can you PM me to let me know what to expect? I've got that and a stomach protector.

Title: Re: A rant about my doctor (should that be dick-to
Post by Brewcrew on Nov 6^th, 2007, 3:54pm

O2 is O2 - What the hell difference does it make what size the container is? I just don't get it.

Prednisone will increase your appetite, but you can control it. Just be conscious about eating like you normally do.

The one bad side effect for me is that I seem to have less patience for fools. I've felt like ripping several heads off and shitting down the exposed necks.

Title: Re: A rant about my doctor (should that be dick-to
Post by txbeck on Nov 6^th, 2007, 6:41pm

You can buy a non-rebreather mask on eBay. If you have an O2 Rx then you can get any size tank. I imagine you can pick up the mask you need at the same place you get the tanks filled. Pred should be only a temporary solution while waiting for slower meds to take effect so weight gain should be minimal.

What an ass this guy sounds like. Don't let docs push you around. They are just humans too. Some good, some not so good, and some having a rotten day, just like the rest of us. No reason to make them into gods.

When I first asked my Internist about O2 he balked because he obviously had never heard about O2 for CH and knew next to nothing about CH at the time. He has since learned a lot, but more important, referred me to a good neuro who did know about O2 and Topamax.

Title: Re: A rant about my doctor (should that be dick-to
Post by Garys_Girl on Nov 6^th, 2007, 10:11pm

Brewcrew, I don't know if you're going to check back in with this thread, but Emily's right - how do you go to work with an M size tank?

Emily, I don't know where you get your O2 scrip filled, but talk to them. Hubby's scrip fills him the huge tank at home and whatever portables he wants. He's got 2 "E" tanks with the wheelie that travel in the car, and 2 oxy-lite size tanks that he carries in a backpack.

Our medical supply store delivers, and he gets new rebreather masks whenever they swap out the M tank.

He couldn't go into work without the travel-size tanks.

Don't give up. You can always have the scrip transferred to another medical supply place, and with your insurance you may have to shop around. Keep looking, calling, and don't give up!

Laurie

Title: Re: A rant about my doctor (should that be dick-to
Post by Lizzie2 on Nov 6^th, 2007, 10:16pm

on 11/06/07 at 15:54:41, Brewcrew wrote:

O2 is O2 - What the hell difference does it make what size the container is? I just don't get it.

I think what Emily is saying is that her tanks are too large. The reason the O2 won't help at work or when she goes away is because she can't take the tank with her! It makes a difference what size the container is because you can't lug a large container in your car to work or when you go away. But the bad doc wouldn't give her a script for a more portable tank!

And then, the O2 isn't working well for her because she's got a regular mask as opposed to a proper nonrebreather.

At least this is how I read it, anyway!

Emily - I'm so sorry you're having to go through all this!! Glad you have an appt with the GOOD doctor next time, but sorry you've had to deal with all this. I can remember many a time walking away from appts in tears, frustrated and feeling hopeless when doctors didn't understand what appeared to me to be right in front of them.

Hang in there!! Glad you know so much about clusters from reading here. Imagine how much worse yet it would be if you yourself weren't armed with info, either!!

We're all here for you! Give 'em hell!

Hugz and PF wishes,
Carrie :)

Title: Re: A rant about my doctor (should that be dick-to
Post by Brewcrew on Nov 7^th, 2007, 7:34am

Apparently I didn't make myself clear. The rant about the tank size was directed at the O2 supplier and/or the prescribing doc. Em's already got O2 - what's the difference if they give her some in smaller tanks?

Not directed at Em.

Title: Re: A rant about my doctor (should that be dick-to
Post by Brewcrew on Nov 7^th, 2007, 7:37am

P.S. - I do know about this stuff. I have 2 M-tanks, 6 E-tanks, and 4 D-tanks in my possession right now. Didn't mean to come off as a dolt.

Title: Re: A rant about my doctor (should that be dick-to
Post by LeLimey on Nov 7^th, 2007, 7:50am

on 11/06/07 at 15:47:02, Emily wrote:

Emily are you with BOC or Air Products?

If BOC ring them and ask for some CD cylinders - they are small 450 litre tanks which will last for2-3 hits. They are about the same size as 2 2L bottles of coke on top of each other so easy to take to and fro work/ days out etc.

For weekends away O2 can be delivered to where you are going if you ask in advance - I do it all the time (I'm with Air Products)

For air products, ring them and ask for freedom 400's - same as the CD's in size etc just a different name.

If you need any more help, shout! You have my number!! Lts see if we can get a mask sorted out too okay?

Helen

Title: Re: A rant about my doctor (should that be dick-to
Post by SteveY on Nov 7^th, 2007, 3:23pm

Emily

Here is a link from the Royal College of GP's in the UK.

Surely even Dr Evil can't ignore the advice of his own professions representitive body?????????

Not much use in the States I know, but some good links to relevant information on it.

Hit him with it, hard :P

Steve

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1872057

Title: Re: A rant about my doctor (should that be dick-to
Post by Emily on Nov 8^th, 2007, 4:41pm

Hi Folks,

Thanks so much for this. I'm almost recovered from it and am able to laugh now and realise that he was just trying to cover up his incompetencies. He also mentioned some research by an independent body that said o2 was no good for CH. I did mention that it was completely wrong!

The row about the tanks is just as you said Carrie. I've got a giant one at home, but I want a small one I can take for work and for when I go away. Because I've got a rubbish mask, it's not as effective as I'd like it to be, so it's not always the first thing I jump for when I feel the burn starting. I'm so sure that it would work if I had a right mask though that I'm not going to give up.

I'm with Air Products who have said that any changes to what I have need to go through my doctor. So an update for you.

After I'd calmed down, I called the doc surgery back and said that I'd felt so rubbish before, I'd forgot to ask about getting some extra bits and pieces for short burst o2 therapy. The receptionist kindly agreed to fill in the form over the phone for me and get nice doc's signature and wrote everything I wanted - 2 portable tanks and a non-rebreather mask! Result! They tried to deliver today but I was in work, so they are coming back on Tuesday. Hip hip hooray!

;;D

Title: Re: A rant about my doctor (should that be dick-to
Post by LeLimey on Nov 8^th, 2007, 5:07pm

Thats true actually - I was wrong in that if your doctor didn't tick "ambulatory" O2 on your original hoof they only supply big 'uns.. Doctors don't usually need telling though ::)

Just glad you have it all sorted at long last! You can have up to 4 freedom 400's at once so as soon as they are delivered ring up and order more so you don't run out okay?

Title: Re: A rant about my doctor (should that be dick-to
Post by purpleydog on Nov 8^th, 2007, 9:36pm

on 11/06/07 at 07:26:44, Emily wrote:

Dr Evil went on to read through the list of other preventatives my neuro had suggested - Pred, Verapimil, Lithium and Methygrsomething or other...`

Because Pred was no2 on the list, he decided to prescribe that, but not without a HUGE song and dance. 'You're going to have to take 16 tablets a day', '
isn't willing to run the risk of prescribing verap without knowing if it's licenced for ch as it then become his problem. Pred is the only thing.

Em

Emily,
I'm so sorry you had to deal with such an ass of a doctor, if indeed that is what he is.

I am concerned that your neuro has suggested prednisone as a preventative. Pred is NOT a prevent, it is a metabolic steroid used to help you control your CH while a preventative such as verapamil, or lithium, or methysergide is being used, and builds up in your system, while you taper off the pred. Pred tapers vary from patient to patient, and when you say you will be taking 16 pills a day, that concerns me. What dosage of pred are you taking? Did he say anything about tapering off? O2 is a good choice for prevents, and those big tanks would be pretty hard to cart around, I agree, but you need to get on a REAL preventative.

I'm a little different when I taper off pred, because it doesn't take as big of a dose to break a cycle for me. The first day, I take 6 tablets (total 24 mg), on day 2, I take 5 spaced out through the day, day 3, I take 4 tablets, again spaced out through the day, and on until I take my last pill. My dosage is low compared to many other people.

Others will start off with 80 milligrams for a couple of days, then taper off from there, according to their doctor's instructions.

Pred is bad for your body, not just the weight gain, being irritable and stomach upset. It does things to your internal organs, bones, muscles, etc, and this damage is not reversible. I'm sorry, I don't have any links handy, maybe someone can post a couple.

Please call your neuro, or the nice doc, and explain this, and please try to get on something like verapamil, or one of the other true prevents you've listed. You can't stay on the pred for any long term period, and any doctor who would keep you on it is irresponsible at best.

Title: Re: A rant about my doctor (should that be dick-to
Post by Lizzie2 on Nov 9^th, 2007, 1:00am

Emily - So glad it is worked out for you!! Right now, I have 4 small E tanks, but even then I'd like the next smaller for more portability, even if they only last 1-2 hits! At work, I'm lucky because I work in the NICU where we always have respiratory therapists around, and they've always said they will help me whenever I need it - I keep a nonrebreather mask in my locker at all times. Once, I finally convinced my neuro to write a script for smaller tanks (In the US, the script has to say exactly what ty pe of tank - at least, that's been my experience but maybe others have had more luck negotiating with the O2 supplier), but then the O2 company out in hickville Pennsylvania said they wouldn't give them to me.

My O2 tanks are all dry right now, and have needed replacing for some time - which I need to do as O2 works so well for me. The thing is, that frova and amerge also work very well for me (not really to abort the current hit, but to prevent the next several hours of hits), so I rely on O2 less than I used to. I remember being ECSTATIC once I finally got the use of O2, after having an ER doc refuse to let me try it because, "that never works for cluster patients..." Bull...

Anyway - glad you got what you needed! Hope it all works out for you! As Chris said, careful about the pred - may want to check into that. You are tapering off? I have avascular necrosis of the bone in both my knees due to too many steroid tapers and IV steroids to treat headaches. Don't want to mess around with chronic steroid use for CH!

Hugz,
Carrie :)

Title: Re: A rant about my doctor (should that be dick-to
Post by Brewcrew on Nov 9^th, 2007, 12:11pm

on 11/09/07 at 01:00:16, Lizzie2 wrote:

(In the US, the script has to say exactly what ty pe of tank - at least, that's been my experience but maybe others have had more luck negotiating with the O2 supplier)

I have been fortunate that way - my script says "O2 10-15 lpm as needed." Those two words have meant that all I have to do is contact my supplier and tell them how many and what size. It's been that way for over 10 years now.

Title: Re: A rant about my doctor (should that be dick-to
Post by Emily on Nov 9^th, 2007, 12:55pm

The doctor would only give me one drug at a time and said I have to take the pred first to see if it helps.

I have got a taper - 80mgs week one, 60mgs weeks 2, etc. My concern has come because I have been thinking what happens when the pred finishes? Do I go straight back up to the full dose? I'm not sure if I'm episodic or chronic yet as I haven't had this for a year yet, but I haven't had many days PF since this started in April. How long a break should I have in between the pred tapers?

So I need something to go with the pred as a long term solution. Am I right in thinking that if o2, ice packs, and energy drinks help with the attacks themselves, there should be no need for the pred?

[smiley=huh.gif]

Title: Re: A rant about my doctor (should that be dick-to
Post by sandie99 on Nov 9^th, 2007, 1:03pm

Em,

if 02, energy drinks and ice packs combo work for you, then make them your ch fight kit. You know yourself best - so listen to what your body tells you. You will notice if it's working and you can tell if you'll need something more.

Lots of PF days your way,
Sanna

Title: Re: A rant about my doctor (should that be dick-to
Post by DennisM1045 on Nov 9^th, 2007, 1:08pm

on 11/09/07 at 12:11:13, Brewcrew wrote:

Same here Brew! I just tell-em what I want and they deliver it.

I've not done a pred taper yet but my neuro and I have discussed it for my next cycle. So in the spring with the beast comes back I'll use O2, ICE, energy drinks and Imitrex Injections + a pred taper. At the same time we're going to try to up my Verapamil again.

Good luck Em..

-Dennis-