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 every 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."

• Lis...
• 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 effects. Honestly, I didn't consider that it was the Emgality, as the listed side effects 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 gained 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 anyone tell me how long this will actually last? I can't figure out how to ask questions from people who have commented."

• Ann...
• 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."

• Lif...
• 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 Verapamil (preventative) and take Relpax 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 lifesaver. Cluster headaches for 12 years. Cycles on 3 months off 4 months like clockwork. 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."

• Ali...
• Taken for 1 to 2 years
• September 24, 2020

"I've 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 100 mg shots a month, and it is a total Godsend."

• Lif...
• Taken for 1 to 6 months
• January 20, 2025

"I have been taking this medication for over 3 months now, and it has changed my life for the better. I used to get several migraines every week and would take at least two triptans a week. I have had migraines since I was a kid (+40 years). I can now eat chocolate, drink some alcohol, all in moderation, and I never get a migraine. I even had food with MSG…and nothing. I get occasional small headaches, but some Advil usually settles the matter. That never worked before. On top of it, besides some occasional irritability, I have no side effects. None. All the other preventive meds I have tried gave me terrible side effects. It is worth trying if others have failed. Hope this helps someone."

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

"I had a 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 the primary doc to send 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 through 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 the third dose that was due in January."

• Jay...
• August 4, 2020

"I have suffered from cluster headaches for more than about 10 years now. Nothing I've been prescribed for a preventative has ever worked. The 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 Emgality now for a couple of 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 of 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."

• Zap...
• Taken for 1 to 6 months
• August 28, 2024

"I have had cluster headaches for about 10 years, which were previously managed with ibuprofen, Excedrin, Fioricet (if more severe), and later with eletriptan. In Jan 2024, the cluster headaches became more severe and failed to respond to anything other than rest and time. They occurred almost daily, lasted 3-5 hours, and prevented normal activity. Oxygen therapy did help but was not a sustainable solution. When I started Emgality (300 mg monthly), the initial effects (first 1-2 days), I noticed some of the secondary effects of my cluster headaches, but the headache itself was absent. I have continued the Emgality for the past 6 months and have not had any recurrence of the cluster headaches."

• STh...
• Taken for 1 to 6 months
• December 26, 2019

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

• Arm...
• 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 the side of the shot. From what I have read about this drug, you need more than one shot at the onset of a cluster. I cannot 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."

• Mal...
• Taken for 1 to 6 months
• December 12, 2020

"12-year chronic cluster headaches. Tried Emgality at 100 mg, then 300 mg/month. Side effects were subtle at first, but after the 300 mg 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."

• Pin...
• Taken for 1 to 6 months
• December 15, 2020

"I've dealt with migraines for 40 years and 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 effects. My insurance covered the drug, and 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!"

• 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 doctor's 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 afterward that felt like a light switch going on and off. I usually take Imitrex daily for 17 years for daily headaches/migraines/clusters. I took a dose of Imitrex and haven't had a headache since 5 days now."

• Mac...
• October 18, 2020

"I’ve been a chronic migraine sufferer for 20+ years with 15+ headaches per month. I’ve tried numerous meds and currently take Topamax and amitriptyline 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, and everything became really sour. I’ve decided to call my neurologist and tell him I won’t continue with this drug. The reduction in migraines doesn’t outweigh the side effects I’m having. By the way, I’ve looked everywhere and no one has posted anything about dry mouth, altered taste, or change in smell. I may be the minority."

• 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."

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

"Horrific weight gain and thinning of hair. Went from 175 lb to 195 lb 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."

• Ric...
• 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 were 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 rhinos 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."

• SFL...
• 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 120 mg 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 am now waiting for this to clear my system. Will never take again."

• Pau...
• 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 the 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 symptoms of a resumption of the cluster. Usually, they pass until later in the summer, so maybe this one will be enough for now."

• Ann...
• 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 an uptick in weight gain. Also, muscle cramps that could be bad. I was at 125 lb 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."

• Sic...
• 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 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."

• Kat...
• Taken for 6 months to 1 year
• April 24, 2024

"A miracle. I've suffered with clusters since the age of 13. Went through every drug they threw at me… from ergotamines to codeine. NOTHING worked except ice packs. I've been on Emgality for 8 months and not one cluster. Painless to inject, just swab spot with alcohol. Saved my life."

• ski...
• 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 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 logbook too."