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        New Message Board Archives >> 2004 Posts >> Dr. Finally did something!!!!!!
        
(Message started by: helpless23 on Feb 7^th, 2004, 8:44am)

Title: Dr. Finally did something!!!!!!
Post by helpless23 on Feb 7^th, 2004, 8:44am

Well, Ken went to the Dr. yesterday after I yelled at her the other day, she got him RIGHT in there. We went, told her what was going on with the Frova and the Insurance company and that since he went off the Frova, his CH's were actually WORSE. She told us the results of the MRI (normal) and the sleep test. He apparently has a SEVERE sleeping disorde which, she said can contribute to cluster headaches. I don't know how much of that is true, but in any case. She wouldn't give me a script for O2. Wasn't happy with the idea of it, she said that everytime he gets a headache, he should go to the ER. I said "What's the point of going to the ER for a headache when you have to wait 45 minutes to an hour sometimes just to see someone, by that time, it's gone". Didn't work. I didn't get the script for O2. She DID, however, give him Imitrex Nasal spray (24 in all with refills) Indomethacin (50 MG twice a day) and she is trying Prednisone with him, short term. 7 day dose.
Started it immediately yesterday around 3 PM and he has been CH free since. Now I don't know if it's just working out like this (CH free because it's not showing up, maybe the beast got scared!!!) or if the meds are working. Only time will tell. But none the less, Ken said to me this morning for the first time in a VERY long time "I got some sleep last night". Thrilled to death!

I'm trying to be very positive and blame it on the meds!
Who knows, maybe he actually has a CH Cocktail that works!? Being lucky the first time around?
She also gave us 21 pills of Frova samples but told us that he CANNOT take the Frova and the Imitrex together. Thank God, he hasn't had to take a spray of it yet, hopefully, he won't. I'm worried if he has to go on Prednisone for a long period of time though.

In any case, wanted to share the news. Ken will be on later to post!

Thanks!
Toni

Title: Re: Dr. Finally did something!!!!!!
Post by Jackie on Feb 7^th, 2004, 9:27am

Hi Toni,
I'm married to a clusterhead too.
It just kills me....some of the doctors will send ya to the ER and prescribe all kinds of drugs but refuse to give a cluster patient 02.....the best abortive out there.

Good luck...keep us posted.

Jacks 8)

Title: Re: Dr. Finally did something!!!!!!
Post by taraann on Feb 7^th, 2004, 9:39am

Well it's very nice to hear someone is getting some PF time and sleep. Ah sleep can be such a beautiful thing! Vibes that it continues for your husband.

P.S. I noticed your name is Toni, is that short for anything? My daughter is Antoinette and we call her Toni for short. Just curious. ;;D

Title: Re: Dr. Finally did something!!!!!!
Post by Giovanni on Feb 7^th, 2004, 11:08am

I don't think this doc is up to speed on CH. Can you find another one in your area? Just an idea.

:(

Title: Re: Dr. Finally did something!!!!!!
Post by don on Feb 7^th, 2004, 11:08am

Heres a little advice for you with the prednisone. Get on a preventative while on the pred.

I have used the prednisone taper many many times. The only times the cycle lessened at the end of the prednisone regimine was when i was also taking a preventative. In my case that was verapimil.

Title: Re: Dr. Finally did something!!!!!!
Post by cathy on Feb 7^th, 2004, 11:31am

Hi Toni, great to read that your hubby got sleep at last, I really hope the cocktail works for him, I would still push for the O2 if you can...sending vibes to him...

Cathy :)

Title: Re: Dr. Finally did something!!!!!!
Post by thomas on Feb 7^th, 2004, 11:46am

on 02/07/04 at 11:08:22, Giovanni wrote:

I don't think this doc is up to speed on CH. Can you find another one in your area? Just an idea.

:(

yeah, what he said....

Title: Re: Dr. Finally did something!!!!!!
Post by brad267 on Feb 7^th, 2004, 11:51am

Okay I've got a question...

What is so wrong with O2, that Dr's are so hesitant to prescribe it? They'll dole out narcotics, and whatever, but to me -- O2 seems like childs play...

Shouldn't prescribing O2 be as simplistic to a Doc as, say, prescribing band-aids?

Confused,
Brad

Title: Re: Dr. Finally did something!!!!!!
Post by thomas on Feb 7^th, 2004, 12:01pm

on 02/07/04 at 11:51:40, brad267 wrote:

Shouldn't prescribing O2 be as simplistic to a Doc as, say, prescribing band-aids?

There are no O2 reps hangin' around the office, buying lunch, golf, givin' away free shit, and paying kickbacks.....

Title: Re: Dr. Finally did something!!!!!!
Post by Edski_1 on Feb 7^th, 2004, 12:11pm

on 02/07/04 at 12:01:32, thomas wrote:

There are no O2 reps hangin' around the office, buying lunch, golf, givin' away free shit, and paying kickbacks.....

Bingo!

Graft rules...

Reminds me of a story some years ago of a cadio Dr that had th audacity of telling the medical community that if heart disease patients changed their diets to a low-fat diet and exercised more they stood a good chance of reversing their heart disease WITHOUT expensive meds or surgeries...

Very quickly labeled a quack. Very likely by the same so-called Doctors that would claim that diet has little to do with your general health. Probably graduated from the same medical school of thought that claims women can't get cluster headaches, or that cluster headaches are just "sinus headaches" or "let's rip out your teeth-maybe that'll stop those headaches"...

Damn. I thought the middle ges ended in the 1500's... [smiley=huh.gif]

Title: Re: Dr. Finally did something!!!!!!
Post by KingOfPain on Feb 7^th, 2004, 1:25pm

Guess I am confused here.

Why a sleep study just to get O2?

Sleep studies are usually done
to diagnose sleep apnea &
other sleeping disorders.

I got my O2 script without
a sleep study.

It's my understanding that
any Dr. can write a script for
O2,.....GP,PCP, etc..

Not only Neuro's have the
ability to write O2 script's.

Maybe I'm wrong.
Wouldn't be the 1st time.
Won't be the last (time I am wrong,
if so).

Find a Dr. that will write
the script for O2.

Many have had great success
with O2....with a non-rebreather
mask.....by the way.

http://images.mooremedical.com/150x150/50105.jpg

O2 should be your 1st weapon
of choice in the battle with
the beast.

If it works for you, the O2.

All, just my opinion, of course.

I am no Dr. & don't claim to be.

http://www.drfeller.com/pa_meet/button.gif

Title: Re: Dr. Finally did something!!!!!!
Post by bobkip on Feb 7^th, 2004, 2:59pm

Dr wont write a script for O2? You need to find a doc that's up to speed on CH. O2 is safe and effective for many, has zero side effects and beats the hell out of dosing up on drugs that can be disasterously dangerous.
If you can't get medical O2, contact jonny for help. best of luck.
Kip
PS Have you join ed OUCH yet?

Title: Re: Dr. Finally did something!!!!!!
Post by helpless23 on Feb 7^th, 2004, 4:59pm

Yes, Toni is short for Antoinette! Everyone loves my name, me...I don't care for it, but I guess that goes with everyone at some point in their lives! Im 2nd generation Antoinette. That's my mother's name too!

Toni

Title: Re: Dr. Finally did something!!!!!!
Post by helpless23 on Feb 7^th, 2004, 5:02pm

on 02/07/04 at 14:59:53, bobkip wrote:

Yes, I joined OUCH so did Ken. :-) And we are sending all of our friends and family members to join too!

As for the O2, she said that SHE WOULD write a script for it, but doesn't like to. She said for him to go to the ER for it. I don't understand why either!

We will see how this works for the week. So far, so good.

If it doesn't work though, you KNOW that I'll be on the phone yelling at this woman again! :-\

Toni

Title: Re: Dr. Finally did something!!!!!!
Post by taraann on Feb 7^th, 2004, 5:03pm

That's cool! My Antoinette is the first in our family. I heard it once when I was a teen and loved it ever since. It's beautiful and not common at all which I love!

Title: Re: Dr. Finally did something!!!!!!
Post by helpless23 on Feb 7^th, 2004, 5:07pm

on 02/07/04 at 17:03:37, taraann wrote:

That's cool! My Antoinette is the first in our family. I heard it once when I was a teen and loved it ever since. It's beautiful and not common at all which I love!

Thank you. I get a lot of compliments on the name all the time. And with my last name, people always tell me that it sounds like a celebrity name! I wish! LOL
I have the name, now all I need is the money. :-\

Well, you have good taste in names (LOL) and I'm sure your Antoinette is a beautiful young lady!

Toni

Title: Re: Dr. Finally did something!!!!!!
Post by Charlie on Feb 7^th, 2004, 5:15pm

Glad something is working for you. Sleep is a good thing. 8)

ER for CH is a pain and as you say, pretty useless. I still think we should carry some kind of OUCH or cluster headache card to give us a leg up when we tell them we aren't looking for a fix. You can make up something, perhaps even get it laminated. It's not the same thing but epileptics carry them, mostly so people know that we aren't drunk but having a seizure.

Ditto on the O2. Ask Jonny. He knows the tricks. Ain't gonna hurt if you're careful and the MD need never know.

Charlie

Title: Re: Dr. Finally did something!!!!!!
Post by taraann on Feb 7^th, 2004, 5:15pm

Thank you she is ;;D(proud mama grin ;) ) Yeah don't we all wish we had the money of a celebrity!

Title: Re: Dr. Finally did something!!!!!!
Post by helpless23 on Feb 7^th, 2004, 5:21pm

on 02/07/04 at 17:15:36, taraann wrote:

Thank you she is ;;D(proud mama grin ;) ) Yeah don't we all wish we had the money of a celebrity!

Well, I'll tell you one thing. IF I had the money of a celebrity, then I would make DAMN SURE that CH sufferers and supporters got help that they needed without all of the horseshit that we/you all have to go through now. I would MAKE SOMEONE find a cure for it, or at LEAST a safe solution without 20 different meds and O2 tanks lying around the house. I would hire the BEST to work on this day and night if need be and do something to help others.

Grrrr...makes me mad!!!!

Toni

Title: Re: Dr. Finally did something!!!!!!
Post by don on Feb 7^th, 2004, 5:59pm

I can pobably tell you why the Doc doesn't like writing O2 scripts.

A lot of insurance companies dont want to pay for it unless it is related to a respiratory illness. The Doc has to do a little extra work to get it provided for CH and it doesn't sound like your Doc wants to do much of anything out of the ordinary.

Title: Re: Dr. Finally did something!!!!!!
Post by chronic_chic on Feb 7^th, 2004, 6:15pm

Another reason doc's seem to be sometimes hesitant about prescribing O2 is that it can actually make certain respiratory conditions worse. If there is any hint of a respiratory condition like COPD, emphysema, cystic fibrosis...basically anything that wrecks the lungs good, then they don't want to prescribe O2 unless you absolutely cannot breathe without it. Some worry that putting a normal person on O2 could aggravate some unknown respiratory condition, although this is pretty rediculous.

In the hospital, I dozed off using it once and woke up 20 minutes later. I told the nurse it didn't matter, and she said, "well I guess not so long as you don't have a respiratory condition."

That is so rediculous that your doc wants you to go to the ER for every attack. ER's are a waste of time for headache conditions and most knowledgable neuros will tell their headache patients not to go there unless you suddenly get some sort of strange abnormality with the headache.

Sounds to me, like what was said above, that perhaps you need to look into getting a new neuro.

For now, I'm glad things are helping, though! Good luck!

~Lizzie

Title: Re: Dr. Finally did something!!!!!!
Post by cootie on Feb 7^th, 2004, 8:27pm

Apparently our doc is no longr goin to prescribe ALOT of pres. meds now cuz of malpractice insurence (a letter he sent out mentiond pain meds and he can no longer treat chronic pain patients)....heard he won't even refill scripts for people useing Flexeril ect.......huh ? So now I am real worried he will not be able to help Brad when his next cycle starts......he jus open'd a really nice new clinic with it's own exray dept and everything ! Wonder if he will let him even have O2 next time now....this is crazy !!!!!! The list of referals on the bottom of the letter were for DRUG REHAB's facilities.....what !!! I jus never understood why docs won't script out O2 for alot of people....but guess this is goin to be a new TREND with the malpractice insurence and choosein to drop scripting out alot of meds for alot of doctors. Never partied on O2 Pam

Title: Re: Dr. Finally did something!!!!!!
Post by 357Mag on Feb 8^th, 2004, 10:00am

on 02/07/04 at 12:01:32, thomas wrote:

There are no O2 reps hangin' around the office, buying lunch, golf, givin' away free shit, and paying kickbacks.....

Dbl Bingo...

I just had the dis-pleasure of having a conversation with on ex-phamacutical sales rep. Told all sorts of stories about buying concert tickets, gifts, golf outings and the like to 'get in the door'.

Certainly didn't want to discuss any futher once I started to voice my distrust and frustration with doctors, insurers and overall 'practice of medicine' in the US.

It's sad, but in this country everything has come down to the almighty dollar. If you are afflicted with something that does not make someone big bucs, you're outa luck.

I am sic of it and believe I have decided on my next career change. Time to get really involved! to that end, i am going to look at dumping my High Tech biz and turn it into lobbying Capital Hill for some serious reform.

IF, I can succeed in getting OUCH a meeting with HHS, I know I can knock down more doors to get us heard. This will become my new passion and mission. There are many details I will have to work out over the coming months, but I feel that it may be time for citizens to do what government is seriously failing to do for us.

Just my passionate 2 cents.

Peace to all,
-dan