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        New Message Board Archives >> Jul-Sep 2003 >> Back From The Drs And Not Happy!
        
(Message started by: CryingInPain on Aug 26^th, 2003, 5:06pm)

Title: Back From The Drs And Not Happy!
Post by CryingInPain on Aug 26^th, 2003, 5:06pm

*Grumble Grumble Curse Curse*
HOWWWWW do you all get your doctors to listen to you? I went in strong, head held high, armed with knowledge and got told...Well the Imitrex injections are almost the same as the pills there are only a few minutes difference in the reaction time...which of course I said the pills take 45 mins and I have read the shots take 10 - 15 mins but she avoided that everytime I mentioned it. Then on the oxygen she said nah it is effective for hospitals and medical use but not for home use. And because I am a smoker it is dangerous...well I would throw out of my smokes right NOW if it would mean her giving me something....

Sooooooo I was sent off with Verapamil 180mg once a day to prevent the CH's
and Ketorolac ( Toradol Brand Name ) for use during the attacks BUT I can only use it 1 pill every 6-8 hours and not more then 5 days or it begins to cause kidney damage YET I can still continue to take the Imitrex oral 50mg as needed up to 4 pills a day (not that it WORKS)

I dont know what to do here!! It is hard being in a small town with my insurance that isnt accepted most places. How do you all get your Drs to listen and care about what you took so much time researching???

~Hugs~
Jen

Title: Re: Back From The Drs And Not Happy!
Post by Bob P on Aug 26^th, 2003, 5:20pm

I told mine that Dr. Goadsby, the most knowledgable person in world re clusters says this:

Analgesics

Opiates, non-steroidal anti-inflammatory drugs and combination analgesics have no role in the acute management of CH. (so throw away the toradol)

Oxygen

Inhalation of 100 per cent oxygen at seven to 12 litres/min is rapidly effective in relieving pain in most sufferers. (so bring on the O2 in a non-rebreather mask)

Abortive Agents

The pain of CH builds up very rapidly to such an excruciating intensity that most oral agents are absorbed too slowly to cure the pain within a reasonable time. (so trash the trex pills)

and

Triptans

Subcutaneous sumatriptan (6mg) is the drug of choice in abortive treatment of a cluster attack. It has a rapid effect and high response rate. In CH, unlike migraine, subcutaneous sumatriptan can be prescribed at a frequency of twice daily, on a long-term basis if necessary, without risk of tachyphylaxis or rebound. (so bring on the injections)

Since my doc didn't know squat about CH, he listened.

BTW - I don't think I've heard of verapamil at 180mg/day being effective for anyone. You'll probably need to up that dosage. Doc Robinson, in Vancouver, has some patients as high as 1080mg/day.

Title: Re: Back From The Drs And Not Happy!
Post by Cooked Brain on Aug 26^th, 2003, 5:23pm

Hi Jen,

sorry it wasn't what you thought it would be... Still don't give up! Obviously it is out of her league, next time try going really mad! Or go in when you feel an attack coming, don't wait for your next appt. You don't have to be nice to the doc that is not nice to you, it is her DUTY to help you, not to try and get you to take as many consults as possible for her to feed the bank-account >:(

hang in there and keep writing!

Title: Re: Back From The Drs And Not Happy!
Post by UnsolvedEquation on Aug 26^th, 2003, 5:44pm

If you're not happy with what your docs is saying or doing...FIND ANOTHER DOC !! Imitrex pills don't work at all for me, not even 4 at a time, while the injections work everytime within a few minutes. If it's the injections you need ... find a doc that will give them to you. Same goes with the O2 !

Title: Re: Back From The Drs And Not Happy!
Post by mustang on Aug 26^th, 2003, 5:45pm

Check you message board.

Mustang

Title: Re: Back From The Drs And Not Happy!
Post by Roxy on Aug 26^th, 2003, 5:57pm

Jen...was this a neuro or a GP that you went to?

I had to go back to my family GP today for pneumonia, but we talked about clusters. She is the one who diagnosed me originally. I told her about my neuro, who is one of the leading neuro's in the field of clusters....but he will not listen to anything I say. I had tried to get him to let me try the SR verap, and he told me I didn't know what I was talking about. So my GP said that when I get over this crap, she'll change my verap for me. Sometimes a GP is more willing to listen and learn than a neuro.

My advice is to keep everything you have printed out....and find another doctor.....fast.

Good luck,
Tracey

Title: Re: Back From The Drs And Not Happy!
Post by Danish on Aug 26^th, 2003, 6:02pm

I'm so sorry your doc wouldn't listen to you - but please don't give up!
My doc acted like that too - until I told him what I read - I printed a lot of pages from the internet for him to read and at last he put down his fences and subscribed me my beloved O2!
Please be "firm" with your doctor... I'll bet that she has ONLY you who suffers from CH... It's rare - most doctors only have one or at the most 2 CH patients. Please tell her you know better!

I'll pray for you! :)

Title: Re: Back From The Drs And Not Happy!
Post by Linda_Howell on Aug 26^th, 2003, 6:11pm

Jen,

Print out BobP's post and take that back to your Dr.

I realize what living in a small town is all about, but you have to get some nerve and stand up for yourself with her. After I got hit in front of my Dr. one day...he totally changed his attitude regarding me.

e-mail me if you need anything. calientev8@snowcrest.net LindaH

Title: Re: Back From The Drs And Not Happy!
Post by jonny on Aug 26^th, 2003, 6:26pm

And if all that dont work you look the Doc in the eye and say "If I get to the point where I want to kill myself im taking you with me".....Always works for me.

..........................................jonny ;D

Title: Re: Back From The Drs And Not Happy!
Post by Cooked Brain on Aug 26^th, 2003, 6:30pm

on 08/26/03 at 18:26:25, jonny wrote:

forget all the above, try this one immediately

:D

Title: Re: Back From The Drs And Not Happy!
Post by CryingInPain on Aug 26^th, 2003, 7:24pm

on 08/26/03 at 18:26:25, jonny wrote:

LMAO!!! Omg this is the first time I have laughed all day!! Thinking since she is a whole 80lb soaking wet 4ft 11in woman that it might just work lol And for extra measures I will take in my 6ft 7in tall husband ya know just for that extra back up ;)

I printed out BobP's posting and have it sitting here ready for my next appt on next Thursday!! Thank you so much for the information!

And to Roxy I went to my Family Doctor which I found out today as I walked in to a different Dr then last week that it is as learning practice. So Im guessing I wont get much help there. I am going to try to locate another Dr tomorrow that could be of ANY help or do something other then look at me like I'm stupid.

Thanks again to everyone!!

~Hugs~
Jen

Title: Re: Back From The Drs And Not Happy!
Post by eyes_afire on Aug 26^th, 2003, 7:41pm

Hi Jen. From some of your other posts, I'm assuming you're from PA... the other side of PA. I don't know exactly where you mean, but perhaps you are within range of my Neurologist?

http://www.hmc.psu.edu/neurology/index.htm

And here's my doc:

http://www.hmc.psu.edu/cgi-bin/provider.pl/sross2

He is a great guy, one of the kindest people. He is knowledgeable about CH and sees at least one other regular from this message board.
Word of warning... he is booked. But if you're desperate, maybe you can communicate your desperation and see if they can squeeze you in. Maybe offer to be put on the last minute cancellation list if you can swing it.

If you're episodic, make an appointment anyway, even if you are out of cycle. He understands and will get you set up for the next cycle. I specifically told him that he is listed on OUCH as a recommended neurologist and that I refer clusterheads to him. If you do see him, please mention OUCH. As part of organizing a local chapter we want to get publicity for OUCH. We want to forge a relationship with local doctors.

When you form a partnership with a good neurologist, everything is so much easier. Getting O2 was a cinch.

If you need a phone number to schedule an appointment, let me know (but you may need to get a referral).

--- Steve

Title: Re: Back From The Drs And Not Happy!
Post by Linda T on Aug 26^th, 2003, 8:33pm

Sorry your doc is not with the program - yet.

I'm from a small town too and I was lucky to find a neuro who at least knew about clusters - and quite a bit too. However, my doc was a little behind the times when it came to prescribing the meds too.

Take everything you can to her on Thursday and make her listen. I found out that you must be aggressive. Tell her what you want to try. Also, I found that faxing letters, etc to my doc was very effective when I wanted a call back. Somehow, they can ignore phone call but can't ignore a letter.

Keep at it and good luck. Linda T

Title: Re: Back From The Drs And Not Happy!
Post by OneEyeBlind on Aug 27^th, 2003, 5:44am

Jen, I am in Central PA and have had very good luck with my family doc perscribing what I need for clusters. She usually gets me in quickly. Medical Center of Marysville. Don't know how far of a drive that would be for you. (Can't tell where you are ... your profile doesn't have it listed). Let me know if you need an exact address. I also did visit with a neuro in the area but she is letting my GP handle all the scripts for me.

Title: Re: Back From The Drs And Not Happy!
Post by Patrick_A on Aug 27^th, 2003, 7:05am

Hey Jen, I am sorry about your Drs probs. It seems we all go through the ignorance at one time or another. You just have to be strong and demand everything you are entitled to. I went back to my GP and demanded another Neuro when my original wouldnt listen to me. They referred me to another 1 that was 60 miles away, BEST move of my life. Yes, I have to drive 60 miles but this Neuro gave me everything i needed and more! Go to the OUCH site and you will find a list of Drs that have been referred in your area. If you have to drive a few extra miles, I swear it is worth it!

PFDAN, Patrick

Title: Re: Back From The Drs And Not Happy!
Post by scottie40 on Aug 27^th, 2003, 7:18am

Imitrex injections aborts my CH in just few mins., Imitrex injections were my life saver, they dont work for all but they sure work for me!!!! I feel like life is almost normal again!.

I'm a smoker also and i have oxygen tanks and machine in my home sometime i have a CIG in one hand and oxygen mask in the other its only dangerous if the oxygen builds up in the room for a long time. I do know if i smoke when i feel a CH coming on it makes may CH come on faster and harder to stop.

If i was you i would drop that bitch and see someone else. CH are to painful to have someone throwing road blocks in your way, when there so many wonderful meds out there.

Go find another DR. that will work with you, your the one dealing with the pain not HER..

Good Luck
Scott

Title: Re: Back From The Drs And Not Happy!
Post by stuey on Aug 27^th, 2003, 7:55am

50 mg imitrex never worked for me. the 100 mg worked but it took way to long as you already know. have you gone to an emergency room? keep hope and look hard for someone else. gotta be another doctor willing to listen and help. also, i didn't know anyone used 180 mg verapamil with any effect. i was taking 240 just for bloodpressure. it didn't help. only when i went up to 960 a day did i get any relief. saying a prayer for you that you find another more open, informed doctor and soon. the problem with most of those doctors is probably ego in that they don't want a patient coming in and telling them how to do their job. gotta be someone more open somewhere near you. my doctors know with the internet people are getting more informed, especially about their own ailment and are willing to work with you. you may have to travel to the next largest city to find someone. stuey

Title: Re: Back From The Drs And Not Happy!
Post by badfly on Aug 27^th, 2003, 10:27am

Jen sorry you didnt get the help you needed.
First and most important, a tip to help you make it till next thursday. Take 2x50mg Imitrex tabs at a time (50mg just doesnt cut it im afraid) and drink a cup of STRONG coffee as well. Cafeen will help your body absorb the Imitrex tab much faster. Basically when you feel the beast coming on do the following, 1) Put the water on to boil. 2) swllow two 50mg Imitrex 3) drink STRONG coffee. I have used this system for many years (when my insurence would only cover the pills) and managed to get relief in 25 and somtimes even 20 minutes.
Second, the Injections will give you relief in under 10 minutes! Mostly around 5. You tell that doc that you are not a hypercondriact! BE ASSERTIVE! Tell her you demand TREATMENT! Even 5 minutes of faster pain relief should be enough to convince your doctor of your need to have those injections. Dont pull your punches. Explain that you are not having headaches, that you wish you were JUST having headaches. You have a serious disease and she needs to be serious about treating you.

Title: Re: Back From The Drs And Not Happy!
Post by don on Aug 27^th, 2003, 12:32pm

If you were to provide your location you may find you get many reccomendations for a new Doc.

Title: Re: Back From The Drs And Not Happy!
Post by KingOfPain on Aug 27^th, 2003, 2:51pm

CryingInPain asked:

"HOWWWWW do you all get your doctors to listen to you? "

Tell them "YOUR FIRED!!!" , has worked like
a charm for me in the past.
Really gets there attention.

:)

KingOfPain

Title: Re: Back From The Drs And Not Happy!
Post by CryingInPain on Aug 27^th, 2003, 4:19pm

on 08/27/03 at 12:32:50, don wrote:

If you were to provide your location you may find you get many reccomendations for a new Doc.

I am in Altoona, Pa ( Central Pa )

Title: Re: Back From The Drs And Not Happy!
Post by CryingInPain on Aug 27^th, 2003, 4:22pm

on 08/27/03 at 10:27:39, badfly wrote:

Thank you for this tip!! I will be sure to try it next time one sneaks up on me! I am not a coffee drinker by nature * Yuck * but if thats what I takes I will get out my Coffee Pot and dust it off and give it a go!
Thank you so much for the tip!!

Title: Re: Back From The Drs And Not Happy!
Post by CryingInPain on Aug 27^th, 2003, 4:26pm

Hello Everyone,

I just wanted to take the time to Thank all of you for your tips and suggestions. I am on the hunt for a new Dr. I have had a few people E-Mail me and they are going to help get me in the right direction in finding a Dr with experience with CH's as well as one that cares about their patients and not just their money!
I cannot thank you all enough for helping me you all are amazing!!

~Hugs~
Jen

Title: Re: Back From The Drs And Not Happy!
Post by Cooked Brain on Aug 27^th, 2003, 6:24pm

anytime jen ;D

it WILL get better, we're here to help you through, just hang in there!

Title: Re: Back From The Drs And Not Happy!
Post by don on Aug 28^th, 2003, 8:06am

Click here and scroll down to PA.

http://www.clusterheadaches.org/doctors.htm

Title: Re: Back From The Drs And Not Happy!
Post by jonny on Aug 28^th, 2003, 7:23pm

Hang in there!

............................................jonny

Title: Re: Back From The Drs And Not Happy!
Post by cootie on Aug 28^th, 2003, 8:21pm

I have a very close old freind that lives in Altoona Pa.....it's prolly a big town ech ? Pam that would shit if it turned out you knew her

Title: Re: Back From The Drs And Not Happy!
Post by CryingInPain on Aug 28^th, 2003, 8:51pm

on 08/28/03 at 20:21:24, cootie wrote:

I have a very close old freind that lives in Altoona Pa.....it's prolly a big town ech ? Pam that would shit if it turned out you knew her

Wow!! I never thought in a million years anyone would be close let alone THAT close! Actually it is quite a small town! Going to Pittsburgh is a vacation to people from Altoona lol

~Hugs~
Jen

Title: Re: Back From The Drs And Not Happy!
Post by stevegeebe on Aug 28^th, 2003, 9:09pm

Jen,

I can't add to what others have said except that your Dr. is an ass in a small town.

Steve G