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scooky1

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Reply with quote  #1 
I heard about "Aimovig" (erenumab-aooe) on a morning TV show GMA or one of those, the drug is a once a month self injectable for migrain (very expencive) has anyone tried it for CVS?
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wynnak

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Reply with quote  #2 
I have heard that a couple have, but not if it worked for them. There was another medication just like Aimovig approved by the FDA a couple days ago. Should help bring the price down. Right now, even migraine sufferers are struggling to get it. But someone somewhere will eventually try it for CVS. Especially if their CVS is migraine driven, like my son’s. The more we control the migraines, the more his cvs is controlled.
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scooky1

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Reply with quote  #3 
Blynda
You say "maigrain driven episode" I have been liveing CVS for 25 years and was told from the begining that CVS was a form of maigrain, an "abdominal maigrain" and thats why we use meds like sumatriptan "imatrex" what do you mean when you say maigrain driven episode? Aimovig is a once a month injection and quite spendy, I hear there is one clone and another that will come on line soon. I have been in the ER and been admited about 10-11 times this year so far. if I can get it approved by the insurance co. I'll  be the lab rat. the last time I tried the new "cure" drug for CVS was "amatriptaline" not good! side affect tenitus (loud hissing in my head for life) I would chance it all to be free from the monster.
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ginny

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Reply with quote  #4 
This med was only very recently approved and has a patent for 20 years.

Abdominal migraine means that pain is more predominate than vomiting.  I am told that the term "abdominal migraine" is no longer being used.  Dr. Felsiher describes the two terms as merely semantics, one being more pain prevalent and the other being more vomiting prevalent.  

There might be other more affordable migraine medications that might help you.  

With CVS, Amitriptyline is usually the first preventative medication tried.  Some who do not do well on Ami do better on Nortriptyline.  Both are in the tricyclic family (Despiramine is another member of that group).

If you have tried various migraine meds as a preventive with no improvement, and your doctor agrees, maybe the dug company would be interested in supplying the med to you to see if this med might help abdominal migraine.

One of my kids is getting a monthly injection of a newer costly medication for an off label use. She is doing fabulous on the medication, and the pharmaceutical company supplies at no cost.  Her insurance kept rejecting her doctors appeal and finally supplied the med. 

Have you tried the supplements?  You might find an improvement.  Be sure to talk with your doctor first.  Most doctors just say the supplements won't do you any harm and most people find they do better on them.



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wynnak

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Reply with quote  #5 
There can be other co-morbid conditions in conjunction with CVS. Migraines and Mitochondrial conditions for example. I think that abdominal migraines may be a more medically acceptable and is probably back on the uprise for being used medically due to CHS(cannabinoid Hyperemesis Syndrome) confusion. 

Dr. Boles differentiates the two terms by saying if the abdominal pain is the prevalent symptom, its abdominal migraines. If vomiting is the primary symptom then he would call it CVS. 

If they let you test it and you are responsive, we would love to here about it.

I know that you can get at least the first 2 doses of Aimovig from the company with an RX from your Physician.  We have learned that it is not a medication that my son can take due to an underlying blood condition that causes issues with clotting. Since Aimovig is meant to adhere to Globulins, this can cause increase clotting. So for people with auto-immune conditions, I would also suggest checking with a Rheumatologist or immunologist before beginning Aimovig.. Our Neurologist was not aware that this could be an issue for clotting or auto-immune conditions. So still new enough for us(personally) to be cautious. 

But some doctor will try to use it "off-label" for difficult cases. Especially with a new similar medications being approved, and others on the horizon. It will bring down the price and open the availability. 

My son uses similar methods of controlling his migraines and abdominal migraines. He takes daily preventative then has rescue meds. He uses Zomig. As the imitrex had side effects that exacerbated symptoms. So a lot of the time it is asking or telling the doctor that the meds is having negative side effects, or has lost it's efficacy. We went through the same thing with Zofran. It was not helpful or impactful for my son's vomiting at all. It's fine tuning and trial and error most of the time. 

Hope that was helpful.

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wynnak

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Reply with quote  #6 
The new injectable that was FDA approved recently is AJOVY, by Teva Pharmaceuticals. http://www.ajovy.com 
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