Elagolix and Headaches: What Users Say (Page 2)

• Anonymous
• Taken for 1 to 6 months
• April 2, 2022

Elagolix for Endometriosis "I have used/attempted Orilissa at the 150 mg two different times. First round discontinued using after 1-2 months and second time after 3 months. The drug resolved 95% of my pain secondary to my endo, but the side effects were almost more destructive than dealing with pain. Side effects included: hot flashes, headaches, inability to sleep, fatigue, lack of motivation, extreme mood changes, anger, anxiety, weight gain, noticeable change in vision, occasional joint pain, and after consuming alcohol (a glass or two of wine) would not feel well. If you can tolerate the side effects and need short-term relief, sure, give it a go. But after my second round, I have decided my quality of life has drastically declined AGAIN and is not worth it."

• Mix...
• Taken for 1 to 2 years
• September 29, 2021

Elagolix for Endometriosis "I started taking this medication about 18 months ago. Started with 150 mg a day but quickly went up to 200 mg. At first, I had constant headaches, bloating, cramping, feeling of fullness, unable to sleep, extreme depression and anxiety, hot flashes, mood swings, but after about 10 or 12 months, all except the occasional hot flash and severe anxiety disappeared (I have been prone to severe anxiety and panic attacks my entire life, but this is on another level). BUT I AM VIRTUALLY PAIN FREE (from Endo at least... narcotic pain meds never really touched my Endo pain). Bone loss can be a huge issue, but as I am literally only taking this until I can have a hysterectomy, which can also cause bone loss, my doctor agreed to keep me on it a bit longer. I did run out 2 days ago and am angry with everyone, starving, gained like 6 lbs, my face is breaking out, my migraines are back, and I feel like I am cramping."

• Cat...
• Taken for 1 to 2 years
• April 4, 2020

Elagolix for Endometriosis "I started on this medication in January 2019, just after a surgery for my endometriosis. I was 17 at the time and was desperate for any relief from my pain. For roughly the first year, I was on 150 mg once a day. My medication cost $30 for a three-month supply or $50 for a nine-month supply through CVS Caremark and my insurance. For the first four months, I was feeling great, but then the pain hit again. For roughly nine months after, I was still in pain every day, bleeding constantly and feeling the side effects of the medication (night sweats, hot flashes, headaches, dryness, acne, joint pain, etc.). I also have a previously diagnosed anxiety disorder and clinical depression that seem to be slowly getting worse. Now I've been taking 150 mg twice a day for roughly a month, and I've been feeling alright. I'm still having all of the symptoms with the occasional endo-ache."

• END...
• Taken for 1 to 6 months
• January 23, 2022

Elagolix for Endometriosis "I've been on Orilissa for almost 4 months. Reading the reviews, I was a bit terrified, I had tried everything else short of surgery. I had one period after taking it for less than a week, and it was painful, but I haven't had one since then. It has taken almost all my abdominal pain away, including my bowel troubles and most of my urinary pain. It's so much more bearable. I have hot flashes here and there and have experienced lots of headaches. My doctor prescribed a very low dose of estrogen to help counteract the headaches, hopefully. And says it shouldn't be enough to cause pain in my abdomen to increase. I would say that I'm more irritable than normal, but I'll deal with it for now."

• Sci...
• Taken for 6 months to 1 year
• July 10, 2022

Elagolix for Endometriosis "I first took Orilissa after having a laparoscopy to verify I had endometriosis. I do not recommend this. Prior to taking Orilissa, I was prescribed birth control pills, the implant, and the depo shot. I had bad side effects with all those other treatments. Now I have to say, for me, Orilissa was NOT worth the trouble. I gained 50 lbs in 6 months, got acne, was constantly hot even in 40°F weather with no jacket and a sleeveless top, irritable beyond belief, and had what I can only describe as 'fly-like' symptoms the entire time I was taking the medication. My whole body ached terribly, I was nauseous, and I had a headache that would not go away. I tried talking to my doctor about all my symptoms, and she made me feel like she just didn't care. She told me that if my pain came back (it never fully went away), that she would put me back on it. So, I haven't been back to that doctor. I'm now searching for a doctor that will give me a hysterectomy."

• Gis...
• Taken for 1 to 6 months
• June 23, 2022

Elagolix for Endometriosis "I was prescribed Orilissa 200 mg as an alternative to a hysterectomy due to uterine fibroids. My periods became much lighter and less painful right away, but the headaches are almost every day, and then back pain and blurry vision started. I also started experiencing weird facial twitching, which I have never had before or after Orilissa. I've always been the all-natural, non-hormonal girl, so I don't know if this is why my body is so sensitive to this medication, but I've decided to tough out the painful, heavy periods and anemia a little longer and hope for another option to surgery. Also, I forgot to mention the feelings of depression and mood swings that just are overwhelming."

• tir...
• Taken for 1 to 6 months
• December 10, 2022

Elagolix for Endometriosis "I've only taken it for 5 weeks, and I've literally had a headache every day since I started. I would trade the abdominal pain for the headaches. My vision seems a little off also, I am not sure if it is due to the headaches or another side effect. I've had more abdominal/pelvic pain since starting also. My dose is 200 mg 2x a day."

• Jex...
• Taken for 1 to 6 months
• August 14, 2021

Elagolix for Endometriosis "I've been doing trial and error of medications and OT and pain clinic for my endo for over a year. This was kind of a final thing for me to try before discussing a hysterectomy. I was extremely skeptical since I already have mood issues from mental illness, but I was desperate. Immediately upon taking it, I was extremely nauseous, and I had the worst migraines that persisted daily for two weeks. I would have stopped it immediately just from that, but unfortunately, if I stop, I'll end up in the hospital from pain if I'm left unmedicated. So I've been on it three weeks now, mixed with the max dose of norethindrone. I bled for the first two weeks, my daily cramps are still horrible, and the nausea and headaches are still there, though not as bad. I also have horrible insomnia during the night, yet I'm completely exhausted during the day and just want to sleep. This is the most side effects I've ever had from a medication. I absolutely don't like this med, but I can't even discuss getting off of it until September 1st."

• lap...
• Taken for 1 to 6 months
• April 18, 2025

For Endometriosis "I had my laparoscopy for my endo, which was 3 cm on the left side of my ovary. I am on elagolix for 3 months. It's been 2 months. I had some side effects: headache, hot flashes, night sweats, and spotting. Slight cramping. I think it is working for me. I hope it helps me. Pray for me."