EyecePick

Well that's definitely ideal! good luck with your emgality.. I had good results for a few months and no side effects. worth a shot for sure!

3mg of sumatriptan is typically sufficient for aborting clusters! ZEMBRACE is a preloaded 3mg dosing of the sumatriptan. OR they make 4mg preloaded pens as well! Something consisdering. (zembrace also has some coupon on their site to help if your insurance doesn't cover).

Emgality is a preventative, sumatriptan is an abortive. They're meant to be used together (as long as your neuro says its okay). They work with different mechanisms...so you can continued to sumatriptan as needed as an abortive

I've been on 25mg indocin TID x 5 days now... I thought I was going crazy but I think this med is making me dizzy/clumsy? I see dizziness on a long list of generic side effects but I was wondering if anyone else has experienced this? It's almost like being drunk (coordination wise) but totally sober.. I feel like my hand/eye coordination is affected. Anyone else??

great information! I tried other NSAIDs prior to indocin.. I'm not sold on my indocin test right now.. I haven't found it useful, but my doctor said it could take up to 10 days for it to work and I may need to double the dosing... fingers crossed. I'm okay with being an anomaly to CH or if I actually have PH.. the actual dx doesn't matter so much as long as I can find some sort of relief! The intranasal DHE is suiting much better than SQ sumatriptan shockingly ...

I'm surprised by that dosing.. all the resources I have found (true medical references) say 200mg/day of indocin is the MAX with 100mg/dose being the max... 225mg/day seems to be out of the spectrum of most resources I've found regarding doses.. interesting to see how everyone does everything so differently.

What stomach issues are you talking about? Verapamil induced TERRIBLE constipation (a very well known side effect of the med)... it slows motility a lot! I was taking miralax multiple times a day initially because I caught on sorta late.. I was so bloated, my stomach hurt, I was nauseated from always feeling full!

I am on 25mg TID for 10 days, if no improvement/minimal improvement I will bump up to 50mg TID. I am currently on DHE intranasal as a new abortive. I have also heard of octreotide... haven't explored that option yet. Yes, I am on PPI currently but with 25mgs taken with food I don't know if I would need a PPI long term (they have long-term use risks of their own). No drinking alcohol is huge! (I gave up alcohol anyways.. it's my biggest trigger).

I have been dealing with this for about 1.5 years... The first cycle started at end of summer 2018 and I thought I had ocular migraines! My brother had a stroke at 27 (from a clotting disorder we have genetic predisposition for... homozygous MTHFR).. that presented with ocular pain... so I made an apt with my PCP. He wondered how I was functioning and how my liver wasn't affected by the amount of excedrin I was chewing down. I thought the excedrin was helping but really the headaches were just resolving after taking the excedrin because of how long the headaches last. I toughed it out for a few months until my boyfriend ( a physician.. ironically) convinced me to see a neuro that quickly dismissed me because its less common for females to experience CHs. Then I saw a headache specialist in NYC who kept doing SPG blocks even though they didn't work.. trialed me on all these meds that didn't seem to work... and I felt, for the first time, I was being used for my money by a healthcare provider. I have since then been with a different headache specialist through a world renowned teaching hospital in NYC... He was apart of the emgality studies and is so knowledgeable. He listens to me! He knows I've done my research so he isn't quick to dismiss me when I say "I was reading some articles and..." I walked into his office crying this morning and he said we need to make a change! So we're trying a whole new approach and will check back in 2 weeks from now to see how it's helping. This pain has recently ruined my life. Initially it was "just" 10/10 pain... and I could manage somewhat. But after being so exhausted from no sleep, the anxiety and depression of failed treatments, feeling misunderstood by friends/family.. I've broken down. It affects my mental, physical and social health 100% now. And that's almost worst than just the debilitating pain. I try to hard to stay optimistic but it can be so difficult when it feels there is no end in sight for this "chronic invisible illness."

I have had zero side effects besides injection site pain/irritation that lasts maybe one day... I believe since its a CGRP inhibitor the side effects are few... it's not really like adding tons of chemicals to your body, but inhibiting the absorption of some.

I just checked pricing through my insurance's Rx coverage-- if the med is approved as other treatments have failed it will be $0! no out of pocket cost for 300mg emgality each month great news!

I'm so happy you mentioned this! My neuro is amazing and we both discussed how I may have atypically presenting chronic paroxysmal Hemicrania (or maybe a mix of CPH and CH) and I am currently on a trial of indomethacin! He said theres some research that indocin also helps CH actually... no harm in giving it.a try when I'm this desperate. He also gave me intranasal DHE as an abortive since the sumatriptan has been less effective. I have definitely researched every damn option.. and I low-key hope its CPH and indomethacin is the answer to it all !!

Emmalou, I feel your despair! Some days I just lose it emotionally... its very difficult to comprehend how something so PAINFUL is not malignant or "harmful" to my health besides my mental state. This is one of the most painful conditions known in medicine... but somehow I feel people just don't understand how bad and debilitating this pain is! Especially because I maintain a full time career as an trauma nurse.. and sometimes I just have to work through the pain with my eye crying and my face flushed... but someone else's life is on the line-- so people don't believe I battle with this 10/10 pain. My poor boyfriend ( a very knowledgable physician, ironically) has watched me suffer and cry all year ! sometimes we just need the release... I've made appointments with a psychologist, psychiatrist, and pain management. Other chronic illnesses are approached with a multi-faceted approach so why should this be any different?! Please update us as you go along.. I have a neuro appt today with one of the neurologist's on the list (this will be our fourth appt together this year).. and I'm going to bring this up to him!

I was able to get the medication for free for one year through Lilly's program!

I have chronic clusters and have taken 300mg of emgality since FDA approval for clusters. Prior to that I took the migraine dose: 120 mg... but they do "load" you with 240, the first month (240) was great, then subsequent months after (120mg) it didn't work... when I bumped up to 300mg it made my chronic clusters VERY manageable... unfortunately today I have a Neuro appt to tell my neuro that the emgality isn't working, that I am having terrible reactions to sumatriptan SQ and can need up to 4 3mg pens a day, and that I'm hopeless. Oxygen doesn't work, prednisone taper isn't doing anything, verapamil never touched me :/ Emgality DID help initially, so that alone might be worth it for anyone suffering from non-stop, debilitating clusters and is trying to maintain a career and life. Good luck!