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vyepti


Cloudy
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has anyone had any success with these infusions....my very out there neurologist has suggested that it is the same as emagility but on hyperdrive and before i commit to the time and the cost ($2,000) i would love to get your feedback

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Hey Cloudy,

The vitamin D3 regimen has a ten year track record of proven efficacy in controlling CH and the maintenance dose costs ~ 50 cents/day.

A little data on VYEPTI (eptinezumab-jjmr) your doctor may not have explained.

xNciDsF.jpg

As you can see from the naming convention used for monoclonal antibodies, VYEPTI (eptinezumab-jjmr) contains murine genes, a polite way of saying mouse genes.

Take care and please keep us posted.

V/R, Batch

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thank you Batch...i have been on the D3 regimen for years and it hasn't stopped my every 3-4 year episodic cluster cycle but of course it may have reduced it ...i am hopeful that it will kick in ...emagaility seems to have helped this cycle in reducing the intensity...i havent gotten over a 5 and oxygen has helped each time 

 

i haven't done the mouse genes yet! will let you know if i do 

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  • 3 weeks later...
On 8/21/2021 at 6:48 PM, Cloudy said:

thank you Batch...i have been on the D3 regimen for years and it hasn't stopped my every 3-4 year episodic cluster cycle but of course it may have reduced it ...i am hopeful that it will kick in ...emagaility seems to have helped this cycle in reducing the intensity...i havent gotten over a 5 and oxygen has helped each time 

 

i haven't done the mouse genes yet! will let you know if i do 

Seems like an extreme choice given that you only experience CH once per 3-4 years? 

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i have done the vyepti and it did not do anything for me but neither has the vitamin d regiment (following all instructions)...i have no doubt it works for others but i seem to not respond to it and i think it has made me very irregular 

previous cycle seemed to be affected by mm but not this cycle...i am going to try RC seeds but had to fly to a wedding so i had to start immitrex as i had no access to oxygen and caffine alone is not enough so i need to get back off immitrex first ...having 4 or 5  a day which i have had over the last month is not conducive to just caffeine as a defense 

i may try a sphenopalatine block have not decided yet but open to any feedback on it 

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18 minutes ago, Cloudy said:

i may try a sphenopalatine block have not decided yet but open to any feedback on it 

...no personal knowledge of SB. tried lidocaine up the nose, which was an hilarious failure, but that was mostly trying to hit certain spot while writhing with a hit.  a quick google search indicates minimal side effects....find someone with experience and give 'er a try!

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