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Luis

Emgality

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11 hours ago, MoxieGirl said:

Hate it when you find something that works, then your body adapts and it stops working.

What are the side effects of Emgality?

Mox

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! 

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12 hours ago, MoxieGirl said:

Hate it when you find something that works, then your body adapts and it stops working.

What are the side effects of Emgality?

Mox

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. 

 

 

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7 hours ago, EyecePick said:

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 !! 

I agree with you that hope is always low-key, but I will hope along with you.

In what I have read about Indomethacin, recommended dosing is all over the place in terms of both quantity and duration. Do you mind saying how much you're taking?  You're taking it along with something to protect the stomach lining (a proton pump inhibitor or something else), I imagine.

Have you looked at octreotide as an abortive?  I've seen it listed many places as an alternative when triptans aren't working, but I don't think I've seen anyone here who actually has used it.  But then again, maybe it'll turn out that you do have CPH.

(Also reminding you again about the D3 regimen.)

Fingers and toes crossed for you.

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@Luis it is my understanding in order to get the correct dosage of 3 100mg injections/month for episodic cluster headaches & have the manufacturer's coupon work for it the Rx from your MD must show the  correct dosage, your medical records must show the correct diagnosis & the coupon must be specific to the diagnosis. If any indicate migraine, be prepared for a fight to get Emgality. If your doc has you down with migraines (the Maxalt you take is for migraines), oxygen isn't used to treat migraines & insurance won't cover it for them.

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8 hours ago, CHfather said:

I agree with you that hope is always low-key, but I will hope along with you.

In what I have read about Indomethacin, recommended dosing is all over the place in terms of both quantity and duration. Do you mind saying how much you're taking?  You're taking it along with something to protect the stomach lining (a proton pump inhibitor or something else), I imagine.

Have you looked at octreotide as an abortive?  I've seen it listed many places as an alternative when triptans aren't working, but I don't think I've seen anyone here who actually has used it.  But then again, maybe it'll turn out that you do have CPH.

(Also reminding you again about the D3 regimen.)

Fingers and toes crossed for you.

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). 

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@Brain on fire I haven’t checked but I will definitely check now since I am on break. Emgality is working okay. It has definitely reduced the pain to manageable levels. The only side effect has been some itching but I’m not sure if it’s from emgality or dry skin. I am still using maxalt has an abortive. I think My cycle is ending but I am not sure yet. Oh btw I have ordered the d3 regimen and can’t wait to try it. This has been the last time that I get clusters. From here on out I will peeper has best as I can. 

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On 12/17/2019 at 5:05 PM, CHfather said:

I agree with you that hope is always low-key, but I will hope along with you.

In what I have read about Indomethacin, recommended dosing is all over the place in terms of both quantity and duration. Do you mind saying how much you're taking?  You're taking it along with something to protect the stomach lining (a proton pump inhibitor or something else), I imagine.

Have you looked at octreotide as an abortive?  I've seen it listed many places as an alternative when triptans aren't working, but I don't think I've seen anyone here who actually has used it.  But then again, maybe it'll turn out that you do have CPH.

(Also reminding you again about the D3 regimen.)

Fingers and toes crossed for you.

I am also back on indomethacin. I have tried a low dose for a few days in the past but it did not help. In November I went to the hospital for my yearly checkup and I told them my attacks are rather short (avg 10 min) and can go on the one after the other for days, the doctors were thinking on CPH but on the other hand I have an excellent response on triptans. So they did not know what to think about it. But to rule out confusion I asked to do the INDO test again.

The doctor said that for CPH, 150 mg/day is a sufficient dose and should do it. For HC, higher doses is required up to 225 mg/day.

I have been in remission since a month but two days ago headaches started again. I must say that the indomethacin start to do something when I take at least 100 mg. Pain completely vanished within a few hours ! Does that mean something ? I really don't know anymore... I will have to do more tests with the indocin to get a real confirmation as it can also vanished out of itself and maybe it wasn' the indocin.

But headache that respond to triptans and also indomethacin is unheard of. So very weird... 

I'll keep your guys posted :)

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@EyecePick, thanks for letting us know.  I sure hope this helps you.  Same to you @Siegfried. I would add that while it is indeed very unusual for headache to respond to both triptans and indomethacin, it might not be completely unheard of.  Table 1 here shows that a small percentage of people with PH did respond to triptans, at least to some extent: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5519518/  Can't say that those people also responded to Indocin, but the fact that some hemicrania patients responded to sumatriptan as an abortive, and one achieved full relief, at least seems to mean that it's not impossible.  And there is this one reported case of a woman who was thought to have CH and sumatriptan injections stopped her attacks within 15 minutes, but then it was realized that she had CPH and Indocin virtually eliminated her pain. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2170242/   With all the complexities of diagnosis and  treatment in this area, I'm disinclined to hold to any absolutes. 

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20 minutes ago, CHfather said:

...... I'm disinclined to hold to any absolutes. 

......and when it comes to CH .....I am INCLINED to absolutely believe exactly this...well said!

Edited by jon019

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Thank you very much CHfather !!

I was looking for this kind of information for a long time but I could not find anything about this.

So I just finished phase 2 of my experiment. Stopped the indomethacin yesterday and now, 24 hours later the pain is back. Not strong but it is clearly there. I will repeat this procedure a few more times to have a clear confirmation.

 

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Hoping you are getting closer to success, Siegfried.  I have wondered why Indo, but not other anti-inflammatories, is the best treatment for hemicranias.  Found this today, which partly resolves my curiosity about that: "Indomethacin is one of the cyclooxygenase 1 inhibitors with the highest penetration rate in the blood-brain barrier.1 Indomethacin, but not other NSAIDs (ie, naproxen and ibuprofen), was found to inhibit nitrous oxide-dependent vasodilation. Other medications that could be considered for HC include topiramate, lamotrigine, naproxen, lithium, onabotulinumtoxinA, and melatonin."  It's from a good recent article with good additional references: https://www.clinicalpainadvisor.com/home/topics/migraine-headache/hemicrania-continua-diagnosis-and-treatment/  (Melatonin is frequently mentioned in the literature as having a structure very similar to Indomethacin.)

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On 12/21/2019 at 6:27 AM, Siegfried said:

I am also back on indomethacin. I have tried a low dose for a few days in the past but it did not help. In November I went to the hospital for my yearly checkup and I told them my attacks are rather short (avg 10 min) and can go on the one after the other for days, the doctors were thinking on CPH but on the other hand I have an excellent response on triptans. So they did not know what to think about it. But to rule out confusion I asked to do the INDO test again.

The doctor said that for CPH, 150 mg/day is a sufficient dose and should do it. For HC, higher doses is required up to 225 mg/day.

I have been in remission since a month but two days ago headaches started again. I must say that the indomethacin start to do something when I take at least 100 mg. Pain completely vanished within a few hours ! Does that mean something ? I really don't know anymore... I will have to do more tests with the indocin to get a real confirmation as it can also vanished out of itself and maybe it wasn' the indocin.

But headache that respond to triptans and also indomethacin is unheard of. So very weird... 

I'll keep your guys posted :)

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. 

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2 hours ago, CHfather said:

Hoping you are getting closer to success, Siegfried.  I have wondered why Indo, but not other anti-inflammatories, is the best treatment for hemicranias.  Found this today, which partly resolves my curiosity about that: "Indomethacin is one of the cyclooxygenase 1 inhibitors with the highest penetration rate in the blood-brain barrier.1 Indomethacin, but not other NSAIDs (ie, naproxen and ibuprofen), was found to inhibit nitrous oxide-dependent vasodilation. Other medications that could be considered for HC include topiramate, lamotrigine, naproxen, lithium, onabotulinumtoxinA, and melatonin."  It's from a good recent article with good additional references: https://www.clinicalpainadvisor.com/home/topics/migraine-headache/hemicrania-continua-diagnosis-and-treatment/  (Melatonin is frequently mentioned in the literature as having a structure very similar to Indomethacin.)

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 ... 

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1 hour ago, EyecePick said:

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

Yep.  Glad to see that about the DHE!  I've read people here talking about good results from DHE infusions, but know nothing about that.

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I started Emgality this weekend. The first opportunity to see if it was any type of solution for me came and I chickened out and went straight for my sumatriptan. Because my supply is dwindling, the next night I decided to be brave. I went to the guest room and just sat there waiting for it to climb. It didn't get much worse than it was when I woke up and it started to come down after twenty minutes - that's about twice as long as it takes for the sumatriptan to make it go away completely. So, not bad. 

However, about three hours later I woke up with another one, which is so rare for me that I can't even remember it ever happening. It was like it was sitting there just waiting to come back and strike. This time, I just took the injectable and went back to sleep - I wasn't in the mood to sit around again. 

I do often worry about how all the medicine will impact my brain long term. That worries me as much as the oncoming headaches. 

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ddove

I dont think the idea is to only use the Emgality, you should still use whatever abortive you have for your attacks. I have also started Emgality and still use oxygen to abort each cluster attack. The Emgality I hope will eventually reduce my clusters down to 0. I went from about 92 clusters the month before my first dose down to 43 the next month. Is it a fluke? coincidence? Nobody can ever tell but who cares, I will take it! My first dose was at 240 I just took the second at 300mg last friday. I still get hits but they are not lasting as long and the oxygen is all I need for the most part. This may all change tomorrow but as of now it is doing the trick. 

Do you have any other abortive other then the injectables? Have you tried the vitamin D3, oxygen, verapamil, or any other types of tricks talked about on this site? 

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I’ve never gotten so many in a cycle that I needed more than the supply of medicine that I have. Usually a couple months’ supply of sumatriptan nasal. This is my first cycle in two years and first with the injectable, which works so well; much faster than the spray. I have read the great stuff about the oxygen... just haven’t gone down that route yet. I’m 42... been getting clusters for nearly twenty years. Usually once a year for a month, but got lucky last year and they never showed up. 

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I am still getting clusters once a day, but the pain is less severe than before taking emgality the first time. I am still using maxalt and haven’t gotten around to get oxygen. My cycle usually lasts a month, but this is the 6th week of the current cycle. And honestly, I’m getting nervous that is not ending. I hope it ends. I’m so tired of going to sleep worried about the pain. 

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14 hours ago, ddove said:

I started Emgality this weekend. The first opportunity to see if it was any type of solution for me came and I chickened out and went straight for my sumatriptan. Because my supply is dwindling, the next night I decided to be brave. I went to the guest room and just sat there waiting for it to climb. It didn't get much worse than it was when I woke up and it started to come down after twenty minutes - that's about twice as long as it takes for the sumatriptan to make it go away completely. So, not bad. 

However, about three hours later I woke up with another one, which is so rare for me that I can't even remember it ever happening. It was like it was sitting there just waiting to come back and strike. This time, I just took the injectable and went back to sleep - I wasn't in the mood to sit around again. 

I do often worry about how all the medicine will impact my brain long term. That worries me as much as the oncoming headaches. 

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

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12 hours ago, CHfather said:

ddove, of course, as FT says, you'd be a lot better off with oxygen as an abortive, but at least please consider splitting your sumatriptan injections: https://clusterbusters.org/forums/topic/2446-extending-imitrex/

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).

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If Emaglity works as a preventative, an abortive won't be needed. Sumatriptan has caused increased intensity, duration, frequency in many & several reported going from episodic to chronic due to using it. Which is why we recommend oxygen over Sumatriptan everyday.

Edited by Brain on fire

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6 hours ago, EyecePick said:

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

My point here is that the headache wasn’t as severe after the Emgality. If I can avoid taking the sumatriptan, I will. 

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4 hours ago, ddove said:

My point here is that the headache wasn’t as severe after the Emgality. If I can avoid taking the sumatriptan, I will. 

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! 

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