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        New Message Board Archives >> Jul-Sep 2003 >> Need of Medicinal Advice here... Really confused. 
        
(Message started by: Tiannia on Sep 11^th, 2003, 1:15pm)

Title: Need of Medicinal Advice here... Really confused.
Post by Tiannia on Sep 11^th, 2003, 1:15pm

ok saw my Internal GP yesterday. She is still tripping out that here I am a 32 year old woman and have the "classic Cluster headaches that Middle Age men get." That "this just doesn't make any sence."

She told me that 6 Imitrex pills is all that you can take within a 30 day period or else it is an overdoase. That this has nothing to do with insurance. Any truth here?

She told me that there are 2 proventive medecatons that she knows of. Sorry was in the middle of a HA at the time of the visit (which made her even more flustered) and can't remember the other one. All I can remember is that she sad it is an anti depressant and she wanted to try me on this other one first. She put me on Innopran. Said that it is also used for high blood pressure. I am to take one a night and see if that will help. She gave me 2 weeks worth. Ever head of it, I di dnot see it on the lists of medications that I saw. Did I miss it?

I took all the paper work from OUCH and here but she did not want to look at them. She said she "knows how to treat this." She said that if the innopran does not work then I shoulf have a "catscan or something" before taking the antidepressant one as it can make you lathargic.

Now on the other hand, I had my MRI yesterday that my back pain maintanance doc sent me in for and I see him on Monday for the results. Hopefully I canget him to Prescrip the O2 to get me throughthe month until me new insurance kicks in and I can get refered to a nerologist.

Title: Re: Need of Medicinal Advice here... Really confus
Post by hopefull on Sep 11^th, 2003, 1:31pm

Good Luck.....

Title: Re: Need of Medicinal Advice here... Really confus
Post by vig on Sep 11^th, 2003, 1:52pm

She said she "knows how to treat this."

Obviously not. No one does.

the neuro I went to said he has "treated hundreds of cluster patients." Okay, let me meet one.

He didn't say he treated them successfully.
False bravado is common among doctors.

As I understand it, we're allowed 2 doses of Imitrex a DAY, not 6 a month. My insurance has me capped at 6 Imitrex Nasal Sprays a month. Insurance is the limiter.

I haven't heard of Innopran.
I was prescribed Inderol which is a blood pressure medicine.
I was also prescribed Elavil which is an antidepressant and DOES make ME lethargic.

Find another GP.
"classic Cluster headaches that Middle Age men get." That "this just doesn't make any sence."
She's obviously not keeping up with modern medicine.

I wanted to add that when I go to the doctor, I never really put myself in his/her hands. I still OWN the problem. I let him give me good advice. I decide if it's right FOR ME. He/she's a paid consultant. My GP is good. So I listen very closely. He gives me good, solid advice and he listens to me.

Title: Re: Need of Medicinal Advice here... Really confus
Post by aprilbee on Sep 11^th, 2003, 2:04pm

I agree with Vig, your physician doesn't sound like she knows very much about CH, I've been with my doctor since I was 16 years old, I was diagnosed that same year (after suffering since I was 12) with CH, and he has researched with me, read anything I brought in, I have had Cat Scans and seen several neurologists just to make sure it wasn't anything more serious, like an anurism or brain tumor or something.

I take Relpax and sometimes Lortab (for shadows) and Elavil it doesn't make me lethargic (but I've been used to drugs that make you tired since I was very young) I was on Enderol, Trazadone, Fiorinol, Darvocet (not good for CH) Relpax has been the best for me.

Go to a doctor that understands CH, try a specialist, do not sit back and let this doctor tell you how you feel, you have to be agressive in your treatment...

Lots of luck to you sweetie and keep us posted!

Title: Re: Need of Medicinal Advice here... Really confus
Post by UnsolvedEquation on Sep 12^th, 2003, 7:20am

I agree with the others...it doesn't sound like she knows much. Maybe you'd better find help somewhere else.

Quote:

classic Cluster headaches that Middle Age men get

I started my bouts with CH at age 19.

Quote:

She told me that there are 2 proventive medecatons that she knows of

There's ALOT more than that

Quote:

She told me that 6 Imitrex pills is all that you can take within a 30 day period or else it is an overdoase.

I've taken WAY more than that. In fact, one night I was told by my neurologist to crush up 4 - 25 mg pills and snort them to try and get them in my system faster. It didn't do a thing. The injections are the only thing that works for me. (Only 4 mg of it to) And sometimes I have to take up to 5 shots a day. Once I even took 8, but I wouldn't recommend that.

Goodluck

Title: Re: Need of Medicinal Advice here... Really confus
Post by catlind on Sep 12^th, 2003, 7:47am

First off, go read this report, and then print it out along with all the other info on OUCH and here and take it to your doctor. Your doc is way behind the times as far as CH goes.

http://www.clusterheadaches.org/members/discus/messages/23/235.html?1061576531

Prof. Goadsby in the UK, Dr. Kudrow, Dr. Tepper (Dr. Bigal and Dr. Rapaport) as well as many other leading physicians in the CH ring all back the leading data.

Our own OUCH president Don Young is in Rome as we speak attending a cluster club conference with leading neuros from around the world.

If your doc disagrees with info from the internet, then tell her to research Prof. Goadsby and the other docs I've mentioned. They all have many papers they have authored on the newest info regarding CH.

Cat

Title: Re: Need of Medicinal Advice here... Really confus
Post by surfshi on Sep 12^th, 2003, 8:36am

What. was not interested in listening to you or even looking at any of the OUCH paper work. no 02,and new how to treat these? FIRE HER AS A CLUSTER CONSULTANT and get Your o2 asap. Best of luck in your persuits. Stick with your apt. test and find someone that will listenand is not ignorant...Best of luck and so sorry to hear your situation...wouldn't even look at your paper work...Hope you weren't charged for the visit...SO sorry ...SURF

Title: Re: Need of Medicinal Advice here... Really confus
Post by Edna on Sep 12^th, 2003, 9:35am

my advice is to find a new doc and soon

The attitude she shows wouldn't sit well with me.

Remember, we have to sometimes be in charge of our own well being as well as the "advice" the doctors give us.

And sometimes, we need other advice.

Good luck and hoping all goes well for you,
EDNA

Title: Re: Need of Medicinal Advice here... Really confus
Post by CryingInPain on Sep 12^th, 2003, 9:48am

Hello There,

I just recently had almost the same thing happen. My Dr was very misinformed and had the " Im a Dr dont tell me how to do something" attitude. So I came here and vented and got some wonderful information!! The first thing I did was like you printed out all the information I could and also like you my Dr wouldnt even look at it for 30 seconds so the next step I took was I requested a new Dr within the same building and I lucked out big time! I found one that has experience with CH's and even though he was familiar with them he still took my printouts and read them. Then discussed treatment options with me. I am on the Imitrex Nasal Spray and somehow he got my insurance to cover 30 applications of it. 10 at a time with 2 refills. At first I was on the Imitrex Oral and was given 60 pills, the Pharmacist was FLOORED. She said most insurances only cover 9 pills a month but she said it was safe to take them she just never heard of so many being prescribed and had to order them for me. Im not sure on the injections as I have not gone that far yet but I know my Dr told me I can take 1 Imitrex Oral every 4 hrs up to 4 pills a day and the spray is one spray every 4 hours up to 4 times a day. And if memory serves I believe the injections are 6mg and you can use two injections a day .... so I dont see how 6 doses of the oral, spray, or injections in a month would be an overdose! Im thinking 3/4 of the people on the board would be dead from overdose of Imitrex then hehe

buttttt Im not claiming to be all knowing on the subject, I'm just putting in my 2 cents (=

~Hugs~
Jen

Title: Re: Need of Medicinal Advice here... Really confus
Post by Tiannia on Sep 12^th, 2003, 12:30pm

Well At least the GP is intertaining... :-/

I am hoping that by getting through the month with the MRI completed, I will be able to start out with a new doc from the new insurance and get straight to a specialist right away as I will not have to wait for them to start the whole process over. I picked up the 6 pills (thanks again Giovanni for the coupon that was a god send) 50 mg pills. I cut them in half as best I could and hope that this will allow for them to last longer. I figure if I can take part of a pill and it helps that will get me to Oct.

I plan on coming to every doc visit with all of the info that I have and give copies to every doc. I will keep going until I find one that will listen.

/huggs to Clusterville. You are all such a great group of people and have made me feel so much better know ing that I can come here.

Title: Re: Need of Medicinal Advice here... Really confus
Post by Tom on Sep 12^th, 2003, 1:59pm

InnoPran® = Inderal® = propranolol = beta blocker = migraine med.

Title: Re: Need of Medicinal Advice here... Really confus
Post by Tiannia on Sep 12^th, 2003, 3:55pm

Thanks Tom - I've heard of Inderal. That makes more sence.

Title: Re: Need of Medicinal Advice here... Really confus
Post by Karla on Sep 12^th, 2003, 5:09pm

Yes I have tried Inderol and it did nothing for me. I have also tried a boat load of antidepressents that did nothing for me. You have to start someplace might as well start with these meds. When and if they don't work then you will have to try other meds. There are alot out there to try. Good luck and sorry your dr. was and is such a jerk.

Title: Re: Need of Medicinal Advice here... Really confus
Post by OneEyeBlind on Sep 12^th, 2003, 5:27pm

Vig's post was excellant ... everyone backed him up. Get thee to a doc that is willing to listen and not treat you with old time remedies !!!!!!!!!!!! There are good GP's out there that understand cluster headaches, but you really should get yourself to a neuro as well to rule out any other head stuff going on !!!!!!!!!!!! Post where you are from and perhaps someone will have a doc close by that you can use !!!!! Mine is excellent. In Central PA and I love my GP ... love my neuro too !!!!!!!!!

Title: Re: Need of Medicinal Advice here... Really confus
Post by tsayswhy on Sep 12^th, 2003, 10:32pm

FIND A NEW DOC. as hard as that maybe. i was about to find a new one if he would not listen to me this time but as soon as i said C/H he was up front and told me he did not know to much about it but would learn with me and get the info. that he needed to help me. and sent me to a good neuro. i was on imitrex pills 100's 3 in 24 hours. until i got O2 good-luck
tari

Title: Re: Need of Medicinal Advice here... Really confus
Post by Cerberus on Sep 13^th, 2003, 12:03am

I would agree with almost all of what the others have advised so far, doesn't sound to me like your GP responds well to coaching.

I DO have a bit of advice about the anti-depressants, STAY WAY AWAY FROM ELAVIL IN ANY FORM!!!!! it made me a zombie for a week after starting the regimen and that was the after effects. NO one I have ever talked to that has taken it has had anything good to say about it.
I take remeron....not overpowering and it helps take the edge off my O.C.D. and anxiety a bit.
I do not currently have a neuro......the last one I saw tried to kill me from within ......gave me Indocin that ate a hole the size of the queen mary in my stomach. GET o2 and be aware that not all meds are created equally.
the standard that seems to work the best (at least from those I've talked to here ) are Verpamil, Imitrex, and oxygen.
Thats all she wrote for me but I really would considder a new doc, given the response you got from the current.

Ramon

Title: Re: Need of Medicinal Advice here... Really confus
Post by goaway on Sep 13^th, 2003, 7:35am

Wow.

Tiannia, in my humble opinion it is now time for you to strap on your Reeboks and hustle on over to a new doctor.

You might consider posting your geographical location to see if some of our list family knows of a good doc in your area?

Hang in there. Things always get better. ;)

Title: Re: Need of Medicinal Advice here... Really confus
Post by Prense on Sep 13^th, 2003, 9:50am

Unless you are having great sucess with the imitrex pills, I would pursue the injections. My insurance co. allows 8 injections per month, but 1 call from the doc got that doubled, and if I need more, he would make another call. The injections work in less than 15 mins. I am still waiting for my O2 script, and I am hoping that it will stretch the trex usage out a bit. Additionally, if you can get the trex injections, the tip on the right will point out how to make it last longer.

After being fed up with docs, neuros, etc., I finally went in to see a different GP with the attitude of "this is what I want"..."you need only to say, yes or no...nothing more." That tactic worked VERY well! It helps to start off talking bad about your previous doc experience (in my case it did anyway) I didn't say bad things about the docs...just bad things about their methods and unwillingness to LISTEN.

Best of luck to you!
Chris

Title: Re: Need of Medicinal Advice here... Really confus
Post by Tiannia on Sep 14^th, 2003, 5:56pm

I am in Las Vegas Nevada. My insurance atm is Ciga - But come Oct 1 my promary ins will be HPA (Health plan of Nevada) and secondary will be cigna. Hubby and I decided we would try the double coverage for a fwe months to try it out - They we can see if it is worth it.

Any ideas on a nero would be great.

Title: Re: Need of Medicinal Advice here... Really confus
Post by Seth on Sep 14^th, 2003, 6:09pm

I have to agree with everyone.. look for a new nero.... some one that will understand and keep up with the writings... Myself have gone through many differnt ones till I found the right one... Now that my wife and I move west.. I have to do the same.. my nero here will not give me the o2... but that should not stop you from finding the right one..

P.S.
blue skies will come soon.