Generic Name: Botox for Migraine Prevention (onabotulinumtoxina)
"My daughter got Botox around 10 a.m. on Jan. 25, 2021. She went home and was dead by 3 p.m. It traveled and took away her ability to breathe. We asked the doctor to give us a batch number, but she refused. My daughter has had Botox for a year, no problem. This time, it killed her."
"It has been 3 months since my Botox injection for migraines. And I am so sick: dizzy, depressed, insomnia, anxiety, extreme fatigue, head feels like it is going to explode. I always feel like I want to throw up. My blood pressure is 100 over 50. Nothing relieves my pain. The neurologist actually yelled at me when I told her how sick I was. She said no way was it the Botox. Botox makes me nauseous, I can't stand up. I just want it out of my body. Wish I never did this. I'm so scared."
"Botox for migraines ruined my life. I lost my ability to swallow, lost control of my neck muscles, breathing difficulty, dry eyes, drooping lids, severe stomach cramping, vomiting, diarrhea, waking up through the night not breathing, body was in a constant panic attack for 5 months, rashes, tingling, spasms, high heart rate, low-grade temp, the list goes on. The nerves never healed to my esophagus and now I'm 2 years out on a pureed diet at 31. Please read about the black box warning and side effects because I sure wish I did."
"After 18 years of chronic cluster migraines, lasting 2-5 days each and occurring 2-3 times a month, I think that I have used every medication possible for prevention with no luck. Then every possible nasal spray, injection, and medication to end the migraine, they got better, but never went away, and when I did not have a migraine, I still had a headache. I had 3-4 days a month when I felt no pain in my head. I have just had my 4th Botox treatment, so at the 1-year mark, my migraines are mostly gone, maybe 1 during the 3 months and only lasting 2 days max. I have some soreness in my neck for a day or 2 after my Botox, but this cannot even compare to my chronic cluster migraines. I did not ever think that anything would give me this kind of relief."
"The Botox not only was highly ineffective for me, but also left me with horrible neck and shoulder pain. My first Botox was over a year ago, a week after that I woke up with a frozen neck and shoulders pain. I was waiting for the 3 months mark for a relief, but it never came. It seems that the muscles that were injected became paralyzed and other ones started overcompensating, and thus became very tight and painful. Neck MRI came normal. 4 months ago I was talked again into the Botox and the neck pain got only worse. On top of that I am having this horrid nerve-like pain on the left side of my head. Besides, the Botox never helped with my migraines. So please be careful, cause you may end up worse than before..with a new kind of pain."
"My migraines became so severe and frequent that I was taking more abortive medications than my insurance covered. I also tried countless preventative medications but could not cope with the strange side effects of these pills. Four years ago, I started seeing a different neurologist at the military hospital and she recommended trying Botox injections. At first, I was quite hesitant. My first set of injections were practically painless. The sensation is similar to plucking eyebrow hairs, but nothing like getting a bikini wax! I've continued Botox every 3 months and my headaches are down to maybe 1 per month and they no longer affect my life as a busy mom. Botox has been a miracle for me!"
"It has been 15 months since my only Botox injections of 151 units. My headache is 1000 times worse than before the Botox. No meds help. Lost about a foot of my hair. Nauseous, anxiety, insomnia, chest pains, ringing in ears feels like boa constrictors squeezing my arms, hard to swallow. It took my happiness away. Can't even get a botulism poison test. You have to go through the CDC. And if you're not on a ventilator at the ER then no test. The doctors lie to us to line their pockets, and we are thrown to the curb. How do they sleep at night?"
"I was referred to a specialist after 20 years of migraines. She spoke with me about Botox for migraines, which at that point in my life, I was desperate for any cure. The day I had it done, I had a severe migraine. The neurologist told me it would be more painful and it would probably make my side effects worse, but that it would only last a couple weeks at max. It lasted 3 weeks of stiff neck and soreness. But after a month, it was worth the soreness and stiff neck because the Botox kicked in and for some reason helped me stay migraine-free for a whole year!? I'd recommend this to anyone desperate for some relief."
"I had a horrific response to the Botox I had for migraines. I ended up 5 days in the ER after the most recent set of injections. Severe heart palpitations, low blood pressure, difficulty breathing, feeling faint, weak, dizzy, rash all over my body, muscle weakness, difficulty swallowing, tightness in my throat, severe dry mouth, tingling in my hands, feet, limbs, etc. I will NEVER get these injections again. There have been days I can barely get up, so severely fatigued and weak. Stabbing random pains, difficulty sleeping, chest tightness and pain, back, head, and neck pain, it has completely halted my way of daily life. Severely puffy eyelids and one is droopy. It has been almost a month since injections, and I am still nowhere near normal. I was told the only thing they can offer me is life support at the hospital if I stop breathing on my own. This has been terrifying. It has caused sudden extreme anxiety, which I didn't have at all before. My neurologist made it sound like the worst that could happen is a droopy eyelid."
"I had migraines for years. I tried Imitrex and similar meds but ended up with rebound headaches. It was a vicious cycle. Narcotic meds also did not work. Botox was a miracle for me. Within two weeks, my migraines had disappeared entirely! The Botox lasted for 4-6 months. I changed neurologists last month, and he had a different method of injection, using twice as much Botox (200 units instead of 100). Two days later, I developed horrible neck pain that progressed from sore to being barely able to hold my head up. I could not look down, bend, brush my teeth, or even turn my head. My head felt as if it weighed 200 pounds. The doctor said it would go away in 2 weeks! 10% of folks get this 'side effect.' I am still suffering."
"Botox is your last resort, they said. Before Botox, I had 3-4 migraines a week. I didn't like the frequent medicine, but I could usually catch it early and hadn't vomited for years. 32 Botox shots were prescribed at my 1st appointment (kickbacks, anyone?) and 3-4 migraines/week turned to 6-7/week. I managed to avoid sumatriptan for 3 days this month with the help of massive doses of caffeine and pain meds I take for a degenerative, painful condition. Always had neck pain, now it's 10x worse in a cramping spasm nightly and 24/7 pain way. Deafening tinnitus (ears ringing), BP and heart rate up, possibly due to Botox pain levels. I breathe shallowly, catch myself doing it, and bizarro heart flutters and faint/dizzy spells I've never felt at 42 years old. My head has not stopped hurting for a minute since Botox, and they're weird migraines - they feel different from my typical migraine and are much harder to treat. Scalp feels swollen. I'm glad I tried, but my miracle drug, it is not!"
"I dumbly took Botox for migraines after not researching the potentially dangerous and fatal side effects. Botox is a dangerous neurotoxin that can cause the symptoms of botulism if it spreads. This is exactly what has happened to me. Side effects included extreme muscle weakness, drooping eyelids, difficulty swallowing and breathing, as well as vertigo, ringing in the ears, and burning and numbness in my arms and legs. Side effects lasted longer than the 3-6 months I was told they would by doctors. Do your research before trying Botox."
"I had Botox treatments for my migraines for about a year and a half. I was thrilled as it completely took away my migraines and I had no side effects. I had my life back. Then last August I went to get my regular 3-month injections at 4 p.m. By 7 p.m. that evening, I was experiencing dizziness. By the next day, I had a severe headache, neck pain, dizziness, trouble swallowing, pain in my shoulders, etc. It was terrible. My doctor told me he didn't think it was from the Botox, but that I probably caught a virus at the same time I got the shots. Seriously? Here I am, 3 months later, and I can hardly hold up my head. I have headaches, shoulder pain, neck pain, pain, and numbness going down my arms. The dizziness has never gone away."
"40+ years of migraines, foods, weather, you name it, day after day. Pills, ER, you name it. Finally tried Botox. Didn't notice improvement first two cycles. Wits end. Started to help a little on 3rd, then wore off after two months. This time, full 200 units, no migraine for over a week so far. That's miraculous!"
"Horrible migraine hours following treatment. Started out like someone hit me in the back of the head with a baseball bat. Then the horrible nonstop headache set in. Ended up at the ER the first day because nothing stopped the pain. Woke up the next day with an excruciating headache. Worse than any of my terrible daily migraines. The neurologist did not call back. Long story short. Went to the ER 2x in 5 days. Neurologist was completely unhelpful and never spoke with me. After the 6th day, I barely made it through work. There is severe cramping in the neck and in between the shoulders. Where the muscles were paralyzed, the other muscles in the area are overcompensating for the 'Botoxed' areas. I WILL NEVER again do Botox. It made a bad situation completely unbearable."
"I have had migraines for 31 years beginning after hysterectomy. I average 16 migraine days every month that last from 4 to 72 hours. I've tried every treatment except Depakote, which I refused because of the lasting bad side effects. I had the first of 3 Botox treatments in the last month and had 11 days of migraines. Was hoping for less. My eyelids are droopy, vision blurred in the right eye, and just now am able to raise my eyebrows just a little. I've read that these side effects go away by the time I get the next treatment. If it affects my eyesight every time, and I still have this many migraines, I'm questioning whether to continue treatments."
"I have failed all treatments for my migraines. Botox was my absolute last resort. I just went for my 3rd session & have to say it's totally worth it. I've gotten up to 2 full months headache free. It's so wonderful to feel normal again!"
"My wife started having chronic migraines after our 3rd child. We spent 3 years trying 3 classes of migraine medication with almost no benefit. We finally decided to try Botox injections. It had some relief noted after 6 months (1 treatment every 3 months). After 18 months, she went from 12 migraines a month to 1. About 1 year ago, our doctor moved and we tried to go without injections, and they have slowly started back (now 10 per month). She is with a new doctor, and we hope to see the benefit again. Having seen the benefit firsthand, it may not be for everyone, but I have read the studies and it absolutely can have benefits for someone with chronic daily migraines."
"I'm very grateful the FDA approved this! I've suffered with debilitating migraines for 25 years now and have tried every medication prescribed and OTC. Unfortunately, the only thing that would take away the pain are narcotics. Since using Botox treatments, my migraines are under control and down to approximately 4-5 a month compared to 20-25. I feel as though I have a life again and not living hour to hour, not having a life in fear of having a migraine. Also, I'm VERY grateful to have good insurance that pays for this."
"I've been experiencing migraines since about 12 years old. I've tried every medication and been in and out of hospitals. I'm 46 now and tried Botox. I received my two series and my first was okay, but one month before, I had a migraine for two weeks. Now, just this past week, I was in the emergency room because I was crawling on the floor, my head was hurting so bad, and I was vomiting all night. I was still having around 7-8 headaches in the month. I will not be going for the third shot. I was still on the preventive, taking two different pills for onset. This seems like too much medication. I'm so frustrated with this. I'm just going to settle; this is my way of life :("
"I had a constant 24/7 headache for two years straight before trying Botox. I tried every other conceivable medication to no avail, but Botox cut my pain to a third of its previous level. I still get injections every four months or so, but it's been three years and I still have the much lower pain level, can work, and am thankful every day for Botox."
"Botox was the best thing I ever did for my headaches. I got my Botox 2 weeks ago. I had chronic migraines. I had a migraine when I went, and one a day after. The doctor told me it may take 7 days to have the full effect. Since the second migraine only 1 day after Botox, I haven't even had 1 migraine. It's a miracle. I'm a new woman. They don't inject it in cosmetic areas, so you don't have to worry about a weird looking face. I'm only 27. I don't need Botox, so I was worried about using it for treatment. There are risks of a droopy eye. I did not have a bad experience, I had the most extreme experience of no migraines. I have to share. Do this for a miracle."
"Have had intractable migraines for 38 years. Just had 31 injections for migraines a month ago. Within 3 days, I began having muscle spasms in my neck and shoulders 24/7. Went back to the neurologist, and he gave me Lidoderm Patches (12 hours on, 12 hours off). They help somewhat, but the adhesive breaks out my skin. I choose to wear them during the day so I can function at work. My head feels so heavy that my neck muscles don't feel like they can support it, so I have to lie down in my car at work every few hours to relieve pressure. I am supposed to have a second round of injections in 2 months, but I have decided the side effects are worse than my 3-4 migraines a week. At least I had a few days without any pain before."
"I received my first round of Botox in October. I must admit there was some improvement in the frequency and severity of my migraines. What I didn't understand is the many, many drug interactions associated with Botox. Please do your research before trying Botox. I went for my second round in January. I was hesitant because I really wasn't feeling well. But my NP advised a second round. That's when things went way wrong. After about a week, I wasn't able to take any migraine medication because it gave me extreme anxiety. Eventually, I had anxiety full-time. I admitted myself to a hospital after three visits to the ER. None of the doctors acknowledged Botox side effects. I was really in the dark. Since then, I have done a lot of research. Don't do it!"
"I have had migraines since a young girl, not realizing what they were. In 2009, the migraines started getting so bad they started affecting my day-to-day life. Many trips to the doctors and neurologists, changing prescriptions often due to lack of effectiveness. I was worried I would never find a medication that would help me. None of the oral medications were helping me. I started getting Botox injections almost a year ago. Skeptical but ready to try. Somewhat apprehensive about so many needles, I have to try to see if this might just be the saving grace from migraines. I am happy to report the Botox is a miracle drug for me. The injections are uncomfortable, but going from over 15 headaches a month to 3 or less per month. I am very happy! Thanks!"
