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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:

225mg/day seems to be out of the spectrum of most resources I've found regarding doses

I've seen a few saying 75mg 3/day (225/day total) would be the high dose.

 

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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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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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Quick update: my cycles usually last 4-6 weeks. I had one that started around December 9 (Thankfully, my first cycle in nearly two years.) Between 12/9 and 12/20 I probably had ten headaches. On 12/20, I took the first month dosage of Emgality. After that, I had four more headaches from 12/21 and 12/24. None since then. 

So, who knows if it was the Emgality that made the cycle shorter? Probably too soon to tell. But, so far so good. 

 

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I have been afraid to try Aimovig because in some people it can make HA's worse. Honestly, I don't think I could endure that.  Does anyone know if Emgality can have the same effect?  I have been having trouble finding an answer to this and frankly, I believe what I read here among you fine folks more than anything I read anywhere else.  

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On 12/16/2019 at 1:55 PM, 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

Here's what I found on this topic.

"In controlled studies with EMGALITY up to 6 months (Study 1, Study 2, and Study 3), the incidence of anti-galcanezumabgnlm antibody development was 4.8% (33/688) in patients receiving EMGALITY once monthly (32 out of 33 of whom had in vitro neutralizing activity). With 12 months of treatment in an open-label study, up to 12.5% (16/128) of EMGALITY-treated patients developed"

Translation - yes it can stop working but the incidence seems low..at least for the first year. After that, who knows?

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Emgality for Chronic CH

Hello to all you fellow sufferers. 
After 1 1/2 years of very bad CCH (4-6a day) without any relief from trying just about every Med I’ve read about on this site ( I have had no success w O2 even with hi flo mask). I have been busting for two years now with high doses (3-4 g) every 40 days then again 5 days later. Although this regiment and the help I’ve gotten from clusterbusters have saved my life I’m now having kidney pain after busting. After not being able to acquire Emgality ( I’m on Medicare) for less than $1700 a month I have finally got a free sample of 4  120 mg injections. I’ve read the migraine starting dose is 2 120 then 120 per month. I have not found the starting dose for clusters just the 3 100 per month. I was wondering if I should do 3  120’s or 4  120’s as a starting dose ?  
My main concern is if the Emgality doesn’t work how long do  I have to wait to go back to busting. I understand that we are all different,  but was hoping someone could share their Emgality story good or bad in regards to interfering with busting. 
Thanks to all and hope your finding relief with what ever works for you. SE. 

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My neurologist gave me samples and told me to take 1 injection of 120 mg every 8 hours,I think.  The website says that the first dose for clusters is 3 100 mg injections given back to back. From what I know emgality is not a triptan so it doesn’t bind to the same serotonin receptors as triptans and busting methods. Emgality binds to the cgrp pain receptors so that people don’t feel the pain of the headache. That is exactly what happens in my case. I cannot feel the pain of the headache but I can still feel when I’m having a headache. I feel the pressure, light sensitivity and dry mouth. I am still on cycle because I can feel the headaches but again not the pain. My second injection would be this coming Sunday. I hope my cycle ends soon but emgality is working. At least I can go to work and function.

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My apologies if this is addressed elsewhere, but wondering if CGRP inhibitors have any interaction with psilocybin busting. I have been on Emgality for two months and it hasn't been helping. I've successfully gotten the triptans and prednisone out of my system and was going to try busting with magic mushrooms but not sure if anyone has information on interactions there. It seems like there shouldn't be a problem based on how the two drugs work.

Appreciate any shared knowledge/wisdom!

EDIT: I see the answer is directly above! 

Edited by Georgieboy
Found the answer above
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