Emgality for Cluster Headaches User Reviews

• Anonymous
• April 12, 2020

"I want to thank everyone for their reviews. I now know I will never take emgality again. I have had about 5 months of stomach problems, had ever test done and the doctors found nothing. I was told it wasn't the shot so I had my doctor start me back on Emgality. Well holy moly, my stomach is hurting again, constipated, joints hurting, chest hurts and on top of that I'm depressed. I was like what is going on. Anxiety and moody, sad about nothing. What really makes me mad is all these reviews and the company say NO SIDE EFFECTS. Now I have to wait 5 months for it to leave my body"

• Lisa
• Taken for 6 months to 1 year
• March 10, 2023

"I have been taking this medication for about a year. It has helped considerably with my headaches but I have had severe side affects. Honestly, I didn't consider that it was the emgality, as the listed side affects were almost none. I have severe bloating- I feel like I have eaten a three course meal almost all of the time- slight nausea almost all of the time, no matter what I have eaten, which is almost nothing. I have gain weight too. Extreme fatigue, brain fog, insomnia. Unfortunately, I am in the midst of perimenopause so it's been difficult to tell what is causing all of these issues. I recently took a dose, but it will be my last. I just hope I eventually get back to my former self- even with the headaches. Can anyway tell me how long this will actually last? I can't figure out how to ask questions from people who have commented."

• Lifec...
• Taken for 1 to 6 months
• May 25, 2023

"My cluster headaches started 6 months ago - I am 55 years old. I was diagnosed with cluster headaches and was having them every evening like clockwork - the worst pain I have ever experienced - I thought I had an aneurysm. I started with Topamax - which had the side effect of feeling “dopey” and my job is very demanding. After a month on Topamax, I was put on Vermapil (preventative) and take Replax once they hit. I was getting them once a day every single day. All I could do is walk in circles - I couldn’t sit or lay down. I reached out for options at a very reputable Neurology group and started Emgality and it worked immediately. I am almost 100 percent cluster headache free. It worked well for me. I know there isn’t a lot known about cluster headaches and wanted to be sure I shared my age as well as what I tried before Emgality."

• Ron
• Taken for 1 to 6 months
• August 24, 2020

"This Emgality has been a life saver. Cluster headaches for 12 years. Cycles on 3 months off 4 months like clock work. I started emgality 3 months ago at the start of a cycle and have only had a handful of headaches that my sumatriptan injections took care of. Not bad considering I average 6 or 7 a day. The best summer of my life. Minimal side effects hallucinations just shadows. Month 1 and 2 felt sick at times but who cares I have my life back"

• Anne
• Taken for less than 1 month
• April 3, 2023

"Horrible! Injection hurt very much. Within 20 minutes I was feeling dizzy and nauseous. My feet and knees were swollen and I had shallow breathing. Had my daughter take pictures to show my doctor. Went to urgent care. The doctor agreed I had a bad reaction. Today I woke up with a sore throat and headache. Taking Zyrtec that the doctor prescribed and pain meds. Activated my chronic pain, fibromyalgia, and Trigeminal nerve. Now I have 28 more days of this drug in my system. Can’t wait to see what else happens."

• Alisha
• Taken for 1 to 2 years
• September 24, 2020

"I've had been having cluster headaches for 15 years with episodes getting closer and closer together. I am now a year free of them and I am nothing but grateful for Emgality. I take three 100mg shots a month and it is a total Godsend."

• Justd...
• Taken for 1 to 6 months
• February 6, 2020

"I had loading dose of Emgality on 11/13/2019. Second dose on 12/13/2019. On 12/15/2019 I was completely bent in half in stomach pain. I have been to Primary doc to sent me to GYN, back to primary, then to Neurologist who basically told me NOT the Emgality then to Gastro doc. Cannot begin to tell you the TESTS they have put me thru because according to docs, "cannot be the emgality". They won't even read this site because LILLY says no reaction like this. Almost eight weeks later still have severe stomach pains. Never did third dose that was due in January."

• Armie...
• Taken for 1 to 2 years
• April 23, 2020

"I have been on Emgality for a year now and have had little to no change in Cluster headaches. I also have had GI issues, weight gain and muscle aches on side of shot. From what I have read about this drug you need more than one shot at onset of Cluster. I can not possibly imagine doing up to 3 injections during the beginning of a Cluster. Unfortunately, I didn’t receive very good results. Good luck and God Bless."

• Jay
• August 4, 2020

"I have suffered from Cluster Headaches for more about 10 years now. Nothing I've been prescribed for a preventative has ever worked. Only drug that does work is Sumatriptan which only would reduce pain once I already had a headache, not prevent a headache obviously. I would average 3-5 headaches a day for about a month during my cluster cycles. Those headaches would range from a 6/10 to a 9/10 on the pain scale. I've been on Emgailty now for a couple weeks and instantly received relief from my headaches. I now get one headache a day that is about a 2/10 - 3/10 that can either be suppressed with a couple Advil or half a Sumatriptan pill. I have never felt so free from my headaches. I haven't had any symptoms. My neurologist said constipation is huge and I also read hair loss was a big symptom (which initially scared me), but like I said, absolutely no symptoms."

• Male
• Taken for 1 to 6 months
• December 12, 2020

"12 year chronic cluster headaches. Tried emgality at 100mg, then 300mg/month. Side effects were subtle at first but after the 300mg dose it became clear that the drug was causing dysphoria and discomfort throughout my body. Also, chest pain and various body aches, trouble keeping warm, skin and body generally felt "off" and uncomfortable. Was clear that it became bad after the large doses. It resolved somewhat before my second large dose so I tried it again. Big mistake and I am waiting for the drug to leave my system. Felt like I lost 2 months in a dysphoric fog. It changed the way the cluster headaches felt - they lasted longer but not quite as sharp. Not worth it and please be aware of the subtle ways this might be making you feel bad."

• Longt...
• Taken for less than 1 month
• January 11, 2024

"49-year-old male. I have had episodic cluster headaches for over 30 years. Using Verapamil and oxygen treatment to maintain control over my life when 'in cluster.' As my fellow sufferers know, both have their limitations. Tried Emgality 12/18/23 and an intense cluster period (2-3 headaches per day) was halted completely within three days. With many years of experience, I can confidently say that this cluster period was nowhere near running its course naturally at this point. No significant side effects. Feels like a miracle. Thank you, Eli Lilly."

• Pinkie
• Taken for 1 to 6 months
• December 15, 2020

"I've dealt with migraines for 40 years & have tried just about every drug/remedy heard of. Recently they transitioned into cluster headaches. When I took my first dose of Emgality I was in a month-long series of headaches, having them daily. Emgality has been a godsend. After 5 months I may have had 3-4 very minor headaches that went away with Tylenol. I have had zero negative side affects. My insurance covered the drug & Emgality picked up the co-pay so I get it for free. The only thing I'm sad about is that this wasn't available 40 years ago!"

• SThomas
• Taken for 1 to 6 months
• December 26, 2019

"I have had cluster migraines, migraines, tension headaches & headaches before I got out of the Army, 19 years ago. I was taking Topiramate for 5 years & got off of it when I got married. The headaches came back again & I was sent to a neurologist who put me on Emgality. Since I started this I have super constipated....(got excited that my work was having to remodel the employee restroom to make it wheelchair accessible which also means they they’re putting in rails....cannot tell you how much they help when you’re constipated!!!) I have also been having serious mood swings & some anxiety. The side effects do not outweigh the risks. I’d rather have headaches than extra weight gain"

• BHF
• Taken for 1 to 6 months
• August 21, 2023

"Within one week of taking medication my cluster headaches started to vanish, now gone. But for the first two weeks, I felt dizzy, like ongoing seasickness. Uncomfortable. Now, I continue to have an 'off' and 'weird' feeling, but no headaches."

• Mac
• October 18, 2020

"I’ve been a chronic migraine sufferer for 20+ years with 15+ headaches per month. I’ve tried numerous meds & currently take topamax & amitryptiline layered with maxalt for pain. My doctor put me on Emgality in June of 2020, it seemed to reduce my headaches. I saw him in September, I mentioned this odd smell but he didn’t seem worried. I’ve always been anxious but did have a few panic attacks, just brushed those off. I’ve been to an ENT and my primary who both said I’m healthy. After my October injection I noticed the smell became worse, I started having problems with my taste, & everything became really sour. I’ve decided to call my neurologist & tell him I won’t continue with this drug. The reduction in migraines doesn’t out weigh the side effects I’m having. BTW: I’ve looked everywhere and no one has posted anything about dry mouth, altered taste, or change in smell. I may be the minority."

• Rob
• Taken for less than 1 month
• August 18, 2019

"I had the initial loading dose which were 2 self administered SubQ injections into the fatty part of my lower abdominal area while at the doctors office this Monday. There was an initial slight stinging that went away in a minute. I had a headache battle going on in my head for a couple of hours afterwards that felt like a light switch going on & off.. I usually take Imitrex daily for 17 years for daily/ headache /migraine/Clusters. I took a dose of Imitrex & haven't had a HA since 5 days now."

• Ricks...
• Taken for 1 to 6 months
• January 7, 2021

"I have suffered a daily headache for over 45 years before being put on Emgality. Normally they were "background noise", a 3 out of 10, but periodically they would increase in pain until I was at a 10 out of 10 and had to take my migraine meds. Emgality stopped all of that. After a few weeks of the initial dose, I actually woke up pain free and only had a couple of days of headaches since. So far, I have been lucky, as the only side effects I have noticed was some weight gain, and the fact that this is the most painful injection I have ever taken in my life, and I have a very high tolerance for pain. To explain my rating, I would give Emgality, the drug, a 10 out of 10, but the injection system leaves much to be desired, a 3 out of 10 because it does work, but it must have been tested on Elephants and Rhino's or something. I will keep taking the meds for now, but the anxiety of actually taking the injection may make me reconsider in the future."

• Paul
• Taken for 1 to 6 months
• February 26, 2020

"I was in a terrible cluster with multiple headaches per day in the week before I finally got the insurance approval. Because I am on Medicare with Humana I could not get any help from the manufacturer because federal law will not allow it. I had three headaches the night/morning after I picked up the prescription at one, two and three so on Saturday morning I gave myself he shots and the headaches stopped immediately. However, I felt horrible for the next week and had a faint rash on my back. The fatigue passed and I recovered and am taking my second injection this week because I can tell I am having symptom of a resumption of the cluster. Usually, they pass until later in the summer so maybe this one will be enough for now."

• SFLCl...
• Taken for less than 1 month
• December 25, 2021

"I am kicking myself for agreeing to let my neurologist give me the loading dose. They gave me 360 mg (three 120mg pens) for cluster headaches which was the wrong dose - per Emgality they should have only given me 300 mg. I did not do my research and would have never agreed to this drug if given time to research. Since my injection 2 days ago I have had horrific insomnia, sore throat, anxiety and trouble breathing. I have taken Benadryl and now waiting for this to clear my system. Will never take again."

• Andrew...
• Taken for 6 months to 1 year
• November 27, 2021

"horrific weight gain and thinning of hair. Went from 175lb to 195lb in less than 3 months. Used it for 6 months. Cluster headaches were very well managed. Was injecting sumatriptan up to 3 times a day and went to nearly zero with clusters and migraines however developed severe stomach bloating and weight gain. Also developed acid reflux issues that seemed to vanish after stopping emgality. Stopped due to issues from Cigna covering emgality regardless of prescription. Had to pre auth coverage 2 times and sometimes it took over a month to get pre auth again."

• Sicko...
• Taken for less than 1 month
• January 1, 2020

"4 month migraine now breaks up but when it hurts, it is unreal. I wouldn't dare go to urgent care as a I barely know my name, they'd lock me up for sure, talk about a headache. Neurologist says Emgality has no side effects other than allergy or site reaction. LIE."

• Anne
• Taken for 2 to 5 years
• January 25, 2022

"I’ve been on Emgality for 3 years now. It took about a month to get working but for the first time in a decade I wasn’t having a cluster three times a day. After about 6 months especially when I went up to the efficacy for cluster headache 3 sub Q dose I started noticing pretty significant edema and uptick in weight gain. Also muscle cramps that could be bad. I was at 125lb and now I am at 150 pounds! I’m chubby but not at least crying in as much pain all the time. I didn’t change my habits or exercises… it is Emgality related."

• Jon
• Taken for 2 to 5 years
• July 8, 2023

"Had cluster headaches for 7 years for 3 weeks 3 to 4 times a year. After a period of 3 months of increasing frequency and intensity, went on Verapamil ER. The Verapamil ER stopped working after 3 years. The neurologist added Emgality. No headaches, no hint of headaches for 3 years. Stopped Verapamil ER 6 months ago, was fine for 5 months. Restarted Verapamil ER at twice the old dose 4 days ago, continuing Emgality seems to be working. The only problem I had with the Emgality was that I was sluggish with a mild headache the day after the injection."

• skirnir
• June 18, 2021

"I have migraines, cluster headaches, and trigeminal cephalalgias that were probably induced while a soldier, as they started shortly after that. In addition to Emgality I also take carbamazepine and sertraline. I have also tried virtually every treatment over the past 50 years, to no avail. After the loading dose (in my case 3 injections), there was little change for about two weeks. By the third week the pattern started to change and the migraines disappeared and the cluster headache moved from 4 am to an unpredictable pattern. By the fourth week I actually went three days with no major headache. After my several monthly booster injections, I noted major improvement so that now I go almost a week without a major cluster or migraine headaches. I do have a constant feeling of being slightly 'high' but that isn't bothersome. No problems with allergy, constipation or the like. For me it is not a cure-all, but improvement is so great that it is worth the time, cost, etc. Keep a log book too"

• Hones...
• Taken for 1 to 6 months
• November 29, 2021

"After 20 years of suffering with the devastating pain of cluster headaches I finally found something that I can rely on and have a normal live during this 7 to 8 weeks duration of the cycle. I am very sensitive to medications and I did not have a single side effect. I’ve used it twice the last cycle I thought it gave me horrible insomnia and anxiety but I realize that those are proper from cluster headaches and this year I try to try to be objective and I have not had any single side effect. I always feel some thing with any type of medication. And now if I have a headache I can easily knock that down with deep breathing in maybe half triptan which if it gets add to a point of 4 out of 10 which is the maximum I reach. I even traveled overseas with the injections on a refrigerator lunch box with ice packs and I had no issues. The injection is not painful if you know how to do it. You need to follow the instructions correctly and make sure you have a 45° angle when injecting it."