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Emgality (Read 867 times)
Joshua
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Emgality
Jul 19th, 2019 at 9:42am
 
Sadly, after years of Verapamil, and virtually no headaches, I had tapered off. I was good for a few months, and the beast has come back with a vengeance, despite tapering back up.

I was on the D3 for a long time, following to the letter, got my numbers where it was suggested and held for many months, but could not stay HA free w/o Verap.

I've searched the boards and seen a few posts about Emgality, the too short duration of the study, the similarity in efficacy between placebo and actual - but curious if others here have started it/tried it/ditched it/side effects, etc.

Any information is appreciated.
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Joshua
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Re: Emgality
Reply #1 - Sep 9th, 2019 at 8:06am
 
Just an update on this thread. 3 weeks after taking the once monthly dose of Emgality, my daily cluster attacks went down from 5 to 2 over 2 weeks, and I'm now at the point where I am getting 1 every couple of days. I've had 2 PF days in a row so far, though.

I am not discounting that the seasons are changing and this could be at play as well, but there for sure was an almost immediate difference after taking the Emgality, fwiw.

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Makeitstopplease
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Re: Emgality
Reply #2 - Dec 22nd, 2019 at 5:51pm
 
Hey Josh,

Iíve been suffering episodic CH for a number of years now....

I just got my loading dose of Emgality this past Monday and although Iím still having 2-3 a day, I find that theyíre not nearly as severe, and Iíd even been able to stave a few off (last one about 30 mins ago) by massaging some pressure points.

Of course, my Neurologist called it a ďWonder DrugĒ and I took stock in that, as heís been in practice for almost 30 years.

My story is pretty much typical of most sufferers; years going undiagnosed, calling loved ones to tell them ďIím sorry, but....Ē when I was at the end of my rope during the undiagnosed years, banging my head against doors/walls/a lamp post, compiling a list of enemies Iíd gladly give a headache cycle or ten, realizing that not even I would be so cruel to wish CH upon them, being diagnosed, the seemingly endless stream of Steroids/Verapamil/Sumatriptans, sleeplessness, fatigue, weight gain, a skipped cycle last year, fancying the hopeless miracle by wondering if it was finally over, feeling devastated when a cycle started just a few weeks ago, etc.

But, overall, I must say that things somehow feel different with Emgality.

Theyíre just not as severe....

However, being a C-HEAD has taught me a lot about humility, and a whole lot more about waiting long enough to see if something actually works or not (my Capsaicin experiment phase).

I wish you the best, my friend

I hope you donít mind if I check in here as I find out how this Emgality thing works out.
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AussieBrian
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Re: Emgality
Reply #3 - Dec 23rd, 2019 at 2:08am
 
G'day,† Makeitstop,† and welcome.† You're so right about your story being typical of so many of us† -† years of mis-diagnosis and the sheer helplessness it can cause.

Thrilled to hear you've found something that helps a bit and there's another short thread on the same subject just a little below this one on the Medications Board.† We'd also love for you to keep us updated on your journey with the stuff because it's important to the entire Cluster community

Have you looked also at the way we now use oxygen to beat the bad ones?† Very different to mainstream info but a godsend to many.† Then there's a new vitamin and supplement recipe that's giving serious help to some 80% of those who must endure this nightmare.

Great to hear you're fighting the good fight and winning,

Brian down under.

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My name is Brian. I'm a ClusterHead and I'm here to help. Email me†anytime at briandinkum@yahoo.com
 
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Makeitstopplease
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Re: Emgality
Reply #4 - Dec 24th, 2019 at 7:49pm
 
Thank you, Brian!

Itís been a solid week now on Emgality, and the worst Iíd had was at 2:47 this morning. ĎTwas about a 6 on the Richter, but the 1/3 Sumatriptan pill made quick work of it (about 10 mins). I know Iím not supposed to break up the tablets. I just donít dig how 100mg pills make me feel, kinda wobbly, a bit (more) disconnected, lol.

I work in the Real Estate market, an idle boy I am not. Gotta stay on my toes and on my game; even during a cycle....or 16. I once had a coworker find me huddled next to an air conditioner, trying to hide the shame of an attack.

Iíve had 1-3 a day oíer the past 2. Overall, Iíve had no side effects from the shot(s) aside from a little tenderness at my belt line. Other than that, no hives, no rash, just the sweet sound of the monsterís teeth being filed down somewhere off in the distance.

I donít have any fear this time, itís gone. And thatís a first.

Speaking of fear, Brian Smiley

About Oxygen therapy. When a much younger man inhabited this body, I worked at a power plant....a big one. I witnessed the awesome power of an exploding Acetylene tank. Whoa  Shocked

I didnít say it was a rational fear....

I know theyíre safe. Hopefully, this stuff is gonna do the trick and I wonít even need it. But, Iíve heard amazing things about Oxygen, and would definitely reach for the tank this time.

Thank you, again, for the nice welcome  Smiley

Merry Holidays!
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Makeitstopplease
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Re: Emgality
Reply #5 - Dec 25th, 2019 at 10:40am
 
Was woken up at around 4:15 this morning with about a 7 on the richter.

And, of course, as we know all too well, it was already too late.

I took another 1/4 Sumatriptan pill and it took about 15 mins to subside. I let about 80% of the pill(s) dissolve on my tongue. I know Iím not supposed to do that, but it cuts the circulation time through my bloodstream down by half, or at least thatís what I tell myself.

I still feel as though the Emgality has dulled the biteyness of the attacks.
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jon019
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Re: Emgality
Reply #6 - Dec 25th, 2019 at 4:47pm
 
Hi and welcome MISP...



Itís been a solid week now on Emgality, and the worst Iíd had was at 2:47 this morning. ĎTwas about a 6 on the Richter, but the 1/3 Sumatriptan pill made quick work of it (about 10 mins). I know Iím not supposed to break up the tablets. I just donít dig how 100mg pills make me feel, kinda wobbly, a bit (more) disconnected, lol.

..break 'em up!....the least amount of triptan that works is the "right" dosage...and lower amounts decrease the frequently reported chances for rebound and side effects. tabs are usually insufficient for hits but whatever works...injects work much better and faster...you can get 3, 4 or 6 mg (yikes!...6 too much) last time I checked...I used to get 5 by 6 mg vials and inject 2 mg at a time (successfully)with insulin needles (hard to find the vials these days, but I would surely search)...triples the bang for your buck. Zomig nasal spray (5 mg)† my abort of last resort...nunna the side effects of suma, no rebounds, and a "free" window of 18 hrs protection.


I work in the Real Estate market, an idle boy I am not. Gotta stay on my toes and on my game; even during a cycle....or 16. I once had a coworker find me huddled next to an air conditioner, trying to hide the shame of an attack.

...wouldn't call it shame...is natural for any "being" to seek safety when helpless/defenseless...not to mention not wanting to scare witnesses. I had one co-worker who thought it was funny (it was NOT) to track me down when I hid (18 acre facility)...thought of him as an arrested development toddler who just didn't understand....


Iíve had 1-3 a day oíer the past 2. Overall, Iíve had no side effects from the shot(s) aside from a little tenderness at my belt line. Other than that, no hives, no rash, just the sweet sound of the monsterís teeth being filed down somewhere off in the distance.

EXCELLENT...pls keep us updated!


I donít have any fear this time, itís gone. And thatís a first.

..for a clusterhead that is PRICELESS...whoo-hoo!!


About Oxygen therapy. When a much younger man inhabited this body, I worked at a power plant....a big one. I witnessed the awesome power of an exploding Acetylene tank. Whoa† †

I didnít say it was a rational fear....

I know theyíre safe. Hopefully, this stuff is gonna do the trick and I wonít even need it. But, Iíve heard amazing things about Oxygen, and would definitely reach for the tank this time.

...OXYGEN saved my sanity...perhaps my life....and that is not at all an unusual in clusterville...tis fast, easy to use, relatively inexpensive (especially compared to triptans and the newer meds), NO side effects, and way more portable than non-clusterheads will tell you. it aint gonna blow up unless you do something really stupid. you'll need a prescription (or use welding O2 if that not happening), a proper non-rebreather mask (available right here),† flow of at least 15 liters per minute to start (you can go up or down depending on experience), and proper technique (there are several only you can determine which best for you)...listen to Brian, he knows of what he speaks and see the OXYGEN tab on the sidebar to the left....

....this may all be moot if the Emgality works....then there is always the D3 regimen (over 80% success rate)...which you really should look into...best yet...its safe and good for you whether you have CH or not....



Merry Christmas

jonathan



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