Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> 2003 Posts >> Cluster vs. Migraine--where the money goes
        
(Message started by: Bob_Johnson on Dec 5^th, 2003, 2:59pm)

Title: Cluster vs. Migraine--where the money goes
Post by Bob_Johnson on Dec 5^th, 2003, 2:59pm

We keep fussing about medical folks who don't understand us and drug companies who don't research meds to help us.

Just for fun, I punched in "cluster" and "migraine" into the PubMed (National Library of Medicine) site. Not good science--but it does suggest where attention (and therefore money) is being directed.

Cluster produced 1627 articles.

Migraine produced 14,946 articles.

Title: Re: Cluster vs. Migraine--where the money goes
Post by thomas on Dec 5^th, 2003, 3:04pm

Yeah, Bob, I'm so sick of experimenting with megraine meds.

Title: Re: Cluster vs. Migraine--where the money goes
Post by Bob_Johnson on Dec 5^th, 2003, 3:09pm

Sorry, Thomas. I think we need to be thankful for migraine. Were it not for our fellow sufferers we would not have most of the meds which help us. Their pain has lead to the research which benefits us.

Title: Re: Cluster vs. Migraine--where the money goes
Post by thomas on Dec 5^th, 2003, 3:12pm

I agree yes, however it is so disheartening when you hear things like "Just be glad you don't have migraines." or "Yeah my cousin gets these really bad ha's and has to go lay down and sleep for a couple of hours." No disrespect for the migraine sufferers here, but we are hurting and spending millions of dollars - we need to be recognized for what we are CLUSTERHEADS!!!!!!!

Title: Re: Cluster vs. Migraine--where the money goes
Post by thomas on Dec 5^th, 2003, 3:14pm

Oh yeah here's the latest one I heard from a PA "Clusters and Migraines are pretty much the same, except migraines last longer."

Title: Re: Cluster vs. Migraine--where the money goes
Post by floridian on Dec 5^th, 2003, 3:21pm

Quote:

but it does suggest where attention (and therefore money) is being directed.

I think there is probably some sort of economic threshold - below that, and it makes no sense for a large pharmaceutical company to develop for a disease.

There are some "orphan drug" laws and policies designed to help people with less common conditions. Only about 15% of the orphan drugs are developed by the big pharmacy companies. More info on that at http://www.fda.gov/fdac/features/1999/399_orph.html

Title: Re: Cluster vs. Migraine--where the money goes
Post by Paigelle on Dec 5^th, 2003, 3:27pm

Yeah, I love it when they say migraines and clusters are one in the same. I have both and I would rather have a migraine any freakin' day. The migraine might last longer, but you take most anything for it and it will help. You can actually go to sleep with a migraine. And last but not least, if the migraine makes you sick at your stomach, you puke and feel all better. The dreaded beast doesn't allow any of that.

Title: Re: Cluster vs. Migraine--where the money goes
Post by aprilbee on Dec 5^th, 2003, 3:40pm

I definately agree with you Paigelle!!

Title: Re: Cluster vs. Migraine--where the money goes
Post by Bob P on Dec 5^th, 2003, 3:48pm

on 12/05/03 at 15:14:58, thomas wrote:

Oh yeah here's the latest one I heard from a PA "Clusters and Migraines are pretty much the same, except migraines last longer."

I heard the same from my new neuro last time. I fired him!! Went back to my GP who was a little panicked because he had never treated clusters. I convinced him that I knew what I was doing, told him what I wanted and he wrote the scripts. Turned out to be a good relationship, Shut Up and WRITE Doc!!!!

Title: Re: Cluster vs. Migraine--where the money goes
Post by Paigelle on Dec 5^th, 2003, 3:52pm

I have said it before, alot of Drs should hand over the Rx pads to us. We are more informed than alot of Drs about CH and migraine for that matter. We know about which meds work and don't. We understand that they might work this cycle and not the next. It is unbelievable the Drs who have never treated CH and they are still determined it is the typical migraine or it is a sinus problem.

Title: Re: Cluster vs. Migraine--where the money goes
Post by dkirin on Dec 5^th, 2003, 6:30pm

I totally agree!! I was lucky to get the Doc that runs the headache clinic at Mtn. Neuro in Asheville, NC and we sit down and map out what to try next together.

Title: Re: Cluster vs. Migraine--where the money goes
Post by lbw on Dec 5^th, 2003, 9:10pm

When I tried to explain to my doctor what was going on with me...she told me that CH's are more prevalent in men. That was so confusing to me...here I was...SUFFERING...afraid to sleep...and she basically told me that it was very unlikely that I had CH.

That's when I found this website. Needless to say..my doctor was proven VERY wrong!

Title: Re: Cluster vs. Migraine--where the money goes
Post by BarbaraD on Dec 6^th, 2003, 7:08am

Maybe it's just easier to treat something they KNOW about (migraines) instead of doing any research or listening to patients about what is REALLY wrong.

It's taken me over 10 years to TRAIN my primary doc, but he was "trainable" so we have a great relationship now. My neuro has migraines and says he's happy with them and glad he doesn't have CH, so at least he KNOWS about headaches. They both know I try "unorthodox" things and call to see how they worked out.

One of the things OUCH was going to try to do, when we first started it, was to try to get more education about Clusters in a few medical schools instead of the 15 minute course docs get on CH. I think we should eliminate the "god" course and put CH in instead.

Hugs BD

Title: Re: Cluster vs. Migraine--where the money goes
Post by jadedgazer on Dec 6^th, 2003, 7:56am

Here's my two cents... (yikes)

I think it has a lot to do with economics of scale here. I hate it but that is the basic truth. There are a lot more Migraine sufferers v. CH sufferers, therefore the drug companies stand to make more money by researching treatments for them. Capitalist pigs that we are here in America, that is the way it is. It is wrong, very wrong.

I know my neuro team is very good, it has taken some time to get me dx'd correctly but I have some screwy symptoms thrown in that don't quite fit the traditional CH dx. At least that is what they have told me. But, a CHer I am. They have never once doubted my pain, nor any suggestions I have had to try to end it. There are some things I am aprehensive about trying and they don't push those on me either. we have a really good working relationship. I am very fortunate.

BTW, amen Paigelle...gimme a migraine any day. Walk in the park!

Title: Re: Cluster vs. Migraine--where the money goes
Post by Prense on Dec 6^th, 2003, 10:57am

on 12/06/03 at 07:56:02, jadedgazer wrote:

I think it has a lot to do with economics of scale here. I hate it but that is the basic truth. There are a lot more Migraine sufferers v. CH sufferers, therefore the drug companies stand to make more money by researching treatments for them. Capitalist pigs that we are here in America, that is the way it is. It is wrong, very wrong.

Absolutely! That is why none of us here are taking any medication specifically designed for CH. Unfortunately, it is not just the drug companies but research as well. When you consider that 20-25% of people have or will have a condition (temporary or otherwise) that will require a neuro's attention, we don't add up to much.

So, yes, we might want to be thankful for migraines...umm, and siezures, and whatever else requires the use of steroids and hypertension... ::)

Chris