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New Message Board Archives >> 2004 Cluster Headache Specific Posts >> Imitrex "Limits" set by suppliers
(Message started by: unsolved1 on Nov 6th, 2004, 11:39pm)

Title: Imitrex "Limits" set by suppliers
Post by unsolved1 on Nov 6th, 2004, 11:39pm
We've talked about this a few times. 2 shots per day max 12mg. Well, i've never been able to do this. I've always used alot of Imitrex. I've always needed it. Narcotics simply are not good enough.
Now they say I have a leaky heart valve (believed to have been caused by Imitrex & DHE). They now say that I can only have 2mg shots, max 2 per day, max 8mg per week. (These are the same docs that supply me with injection refills)
NOT GOOD ENOUGH
When I run out, there's gonna be hell to pay !

Unsolved

Title: Re: Imitrex "Limits" set by suppliers
Post by Tom K on Nov 7th, 2004, 12:25am
I feel for you.  Did you see the thread about heart problems or did it get posted while you were away?  Here is some of it...

Oct 25 (Reuters Health) - New research suggests that
cluster headache, a severe type of headache that usually begins around one eye, often occurs together with a heart defect called patent foramen ovale (PFO), in which blood can pass through a small hole from the right to the left side of the heart without going through the lungs first.  
In the fetus, the hole (foramen ovale) is open, since blood does not need pass through the lungs to pick up oxygen while the baby is in the womb. After birth, the hole normally closes, but quite often this closure is incomplete. Since it is a small defect, people are often unaware that they have an open (patent) foramen ovale.  
As reported in the medical journal Neurology, Dr. Cinzia Finocchi and colleagues, from the University of Genoa in Italy, used ultrasound to look for PFO in 40 people with cluster headache and 40 similar subjects without such headaches.  
There was evidence of PFO in 17 patients with cluster headache compared with just 7 headache-free subjects. Having a cluster headache more than tripled the odds of having a PFO.  

Don't know if this is what you are dealing with or is it a heart valve?  If they took away my trex, I'd beat the crap out of them.  Have you been getting hit again?  How is the DHE lasting?

T

Title: Re: Imitrex "Limits" set by suppliers
Post by Bob_Johnson on Nov 7th, 2004, 11:25am
You may be aware that I've been posting this for a couple of years. It has given me 100% relief, always within 20-minutes. Why not print this info and talk to your docs about a trial. On a per dose basis, it's much less expensive, to boot.
-----
1: Headache 2001 Sep;41(8):813-6  


Olanzapine as an Abortive Agent for Cluster Headache.

Rozen TD.

Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. The initial olanzapine dose was 5 mg, and the dose was increased to 10 mg if there was no pain relief. The dosage was decreased to 2.5 mg if the 5-mg dose was effective but caused adverse effects. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and two patients became headache-free after taking the drug. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. It alleviates pain quickly and has a consistent response across multiple treated attacks. It appears to work in both episodic and chronic cluster headache.



--------------------------------------------------------------------------------

Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.

Title: Re: Imitrex "Limits" set by suppliers
Post by unsolved1 on Nov 7th, 2004, 1:29pm
Tom - I'm not sure if it is PFO that I have or not. I e-mailed my docs assistant and asked her. Waiting for a reply.
Bob - I've seen you post that in many threads. I'm happy to hear that Zyprexa helps you. Did you know that Todd Rozen is one of my 3 neurologist ? He also had me try Zyprexa and it did me no good. Thanks anyway.

I've done every CH med in the books plus a few others !
Still depend on Imitrex injections for relief

Unsolved

Title: Re: Imitrex "Limits" set by suppliers
Post by don on Nov 7th, 2004, 4:16pm
WTF DUDE! What else can happen with you?

How did they find out you have leaky plumbing? Symptoms ? I've used a lot of trex in my lifetime and now I'm wondering.

Have you researched the occipital nerve implant thing?

Title: Re: Imitrex "Limits" set by suppliers
Post by unsolved1 on Nov 7th, 2004, 7:07pm
I was told to have an 'echo' test by the cardiologist at Diamond Headache Clinic. She said that accessive use of Imitrex / DHE can cause leaky heart valves. Not sure if it is the same as PFO or not.

Have I researched the Occipital Nerve Implant thing ??????
I was the first person in the US to have a 'bi-lateral Occipital Nerve Stimulator implant' @ MHNI in March 04'. It didn't help sh*t.

Unsolved

Title: Re: Imitrex "Limits" set by suppliers
Post by don on Nov 7th, 2004, 8:13pm
Thats what I call research.

Title: Re: Imitrex "Limits" set by suppliers
Post by Eb on Nov 7th, 2004, 8:30pm
Unsolved,

In the military here and a chronic sufferer for the past two years...

Also have a bicuspid aortic valve, which allows for mild blood regurgitation.  I had been told my whole life that I had a heart murmur which wasn't looked into until a year and a half ago, when the bicuspid valve was discovered...

I guess I'm VERY lucky that "they" haven't put 2 and 2 together and stopped my being able to get Imitrex...

Your doctors are saying the 'trex caused your leaky valve?  Sorry to hear that you're being limited....here's hoping you find something...anything that will work for you.

Eb

Title: Re: Imitrex "Limits" set by suppliers
Post by aggiegran on Nov 9th, 2004, 11:11am
>:(....I am there...and I'm mad as hell....It seems that some goof ball with my insurance com. has decided I can only have 6 headaches a month.....I told her to get a life or a glass belly button....cause she did not know what she was talking agout, I've looked around and there was a Law suit filed and Won in Fla..against ins. com. concerning this problem.. They are screwing up my life and I don't know where to start fighting....  

Title: Re: Imitrex "Limits" set by suppliers
Post by sioux-z on Nov 9th, 2004, 3:36pm

on 11/09/04 at 11:11:57, aggiegran wrote:
>:(....I am there...and I'm mad as hell....It seems that some goof ball with my insurance com. has decided I can only have 6 headaches a month... They are screwing up my life and I don't know where to start fighting....  


I had the same problem.  I had my doctor call the insurance company directly for a "prior authorization" and to explain that cluster headaches (by definition) occur in clusters and can occur several times a day for several days, weeks, months.  He made it very clear to them that six in a month wouldn't cut it.  He had to call 3 times in one week.  They told him the first time that policy limits were for 6 and they couldn't do anything.  He called three times and spoke to three different people and got a different story each time.  I also complained to my HR representative at work and she also contacted the insurance company.  The insurance company told her that my doctor just needed to call them (he had already called twice at this point.)  A friend of mine, who was a former claims representative for an insurance company, suggested I contact the insurance company myself, immediately ask to speak to a supervisor and complain until something was done about it. (this I didn't do because I was so frustrated and angry that I knew I'd just end up screaming at them and wouldn't get anywhere)  I'm still not sure what was effective but somehow they made an exception and I can get what I need now.  Another thing I would suggest would be to inquire if there is an appeals process for denial of your claim.   Imitrex injections are expensive (about $170 for two injections) and the insurance company limits them to save money.  I went to the ER twice before I got the extra injections- that cost them over $1000.  So much for their little plan to save money.  

Title: Re: Imitrex "Limits" set by suppliers
Post by survivor13 on Nov 14th, 2004, 2:43pm
( i don't understand how mfg's. can limit our dosages. my nuro. says i can take six shots a day, but my ins. will only allow 2 per co. pay. 3 years ago i could get six shots per co-pay. sounds like a scam to get more of our hard earned money.   [smiley=mad.gif]

Title: Re: Imitrex "Limits" set by suppliers
Post by marlin on Nov 29th, 2004, 2:29pm
I know the limit is 2 shots/day but I also know that if the 24hrs aren't up when I get hit, I will reach for the trex.  I've done it on several occasions, most recently 3 weeks ago.  The most I've done is 3 shots in 24hrs and never closer than 6 hrs apart.

Hope I haven't fucked myself up too bad.  If I have I sure can't tell.

Title: Re: Imitrex "Limits" set by suppliers
Post by Gator on Dec 2nd, 2004, 2:59am

on 11/09/04 at 11:11:57, aggiegran wrote:
>:(....I am there...and I'm mad as hell....It seems that some goof ball with my insurance com. has decided I can only have 6 headaches a month.....I told her to get a life or a glass belly button....cause she did not know what she was talking agout, I've looked around and there was a Law suit filed and Won in Fla..against ins. com. concerning this problem.. They are screwing up my life and I don't know where to start fighting....  


PLEASE tell me this is Aetna getting sued!  Come on.  Make my day.  I am fighting these ba$tards now.  Actually, if it's the one I am thinnking about, it was BCBS.

Try this:  Have your neuro write a letter of medical necessity.  Appeal if still denied.  Make sure you note peoples' names, times and dates of calls and what was said.  If still denied, inform them you will be filing a complaint with the state insurance commissioner's office and then do so.  If still no relief, see if you can get a patient advocacy lawyer to take your case if so, call the insurance company back and let them know this is your next step.

Also, read this:

http://headaches.about.com/cs/advocacy/a/supr_crt_ins.htm

I suppose if all else fails, you can start going to the er with your attacks.  They may decide it's cheaper to pay for the meds than 20 er visits a month.   ;;D

Fuken insurance companies.  I'll stop before I get on a rant.

Gator




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