I had 3 episodes of Botox injections to treat chronic migraine last year. It did help to reduce the severity and frequency of migraines, but since the second treatment I have suffered a lot of unexplained generalised symptoms including numbess, weakness, pins and needles and pain in my legs, arms, hands and feet, difficulty walking (especially up hills or stairs) twitching of muscles all over body, general fatigue, diificulty in speaking, memory loss and reduced ability to concentrate. I have had numerous tests with neurologist, including MRI scans to rule out multiple sclerosis. Most tests have been normal apart from very mild abnormality in EMG indicating some peripheral neuropathy in my feet. The symptoms are very slowly resolving with time, but are still present to some degree one year after the last botox treament. My neurologist submitted an adverse event report about the botox, but says that there have been no confirmed reports of distant effects of botulin toxin after treatment for migraine. Has anyone else had a similar experience?
Oh my gosh, Jackie, I'm so sorry to hear this! I had some problems that made me stop after the third treatment but it was localized numbness and partial paralysis in my neck. I had to buy a soft neck brace because I literally did not have the strength to hold my head up. I felt a little symptoms into my arms but that was related to the neck and the neurologist said it was all not uncommon and was even symptoms listed as possible side effects. It still scared me. But it's nothing like you've experienced. I'm a physical therapist by training and I'm very puzzled by your symptoms. I'm thankful your doctor has followed up and reported it. I'm curious has anyone else out there had these "Multiple Sclerosis" type symptoms? Praying they continue to resolve for you!
Hi Caralleen
Many thanks for your reply. Its interesting to hear about your experience. I remember seeing it listed somewhere about botox side effects that it can cause weakness of the neck and a feeling of heaviness of the head. Hope its all resolved now. It hadnt occurred to me until today to ask a question on a migraine forum -so its really good to get a response so quickly. Its been very difficult trying to deal with a weird variety of strange symptoms over the past year with no apparent known cause. I have been well and truly investigated by a nerologist and rheumatologist with no clear answers. Have had the usual unhelpful comments about it being "probably just stress"!. So frustrating. Within myself it feels that I had an acute period of illness around this time last year, when I couldnt stand up for any length of time, couldnt hold a pen properly or write clearly, lots of other symptoms, and ended up being off work for three months as I was too unwell to do my job. It felt as though something was very wrong with my nervous system. Although things have gradually improved with time, I seem to be left with some residual effects, which I hope will disappear with time. I would love to know if anyone has experienced anything similar? I think that with any medical products, although they undergo rigorous trials before being marketed and used, sometimes it is not until there has been sufficient use in a large enough number of the population that potential side effects might become apparent.
Hi Jackie, nice to talk to you. I never considered talking on a forum either. It was by accident I landed on this one. It is somewhat comforting to talk to others who truly know the kind of challenges we are living with daily. I'm glad to hear you're better now. My problems all resolved within about 8-12 weeks after I stopped the botox injections. Definitely the difficulty with swallowing scared me the most. That was 4 years ago and I've never had a symptom return. Your symptoms are puzzling. You said you had an episode of acute illness? Was the illness a separate problem from the neurological symptoms or one in the same? I'm curious if you had a virus that exacerbated your adverse reaction to the botox, or if a virus actually was the cause of all of it. I think medical research is beginning to show that viruses are the origin of a lot of chronic diseases. Also, curious if you ever had mononucleosis in the past. And your botox reaction could have flared that up (if you had a history of it). Oh well. Sounds like you had good doctors caring for you. If it were to ever happen again, which I PRAY not, you should consider going to the Cleveland Clinic or the Michigan Head Pain and Neurological Institute. (I actually went to the latter one twice). Really good team of docs.
my first round of botox was may 13 and i had worse paralysis from hemiplegic migraines in the 3 months that followed than in the time before, i had another round in august of last year and it affected my swallow, i could only swallow on one side of my throat and this eased after about 6 weeks
Hi
Thanks for replying. Sounds scary! Hope you are okay now. Did the botox help your migraine in the long term?
Hi
Thanks for the tips. Are you in USA? I havent heard of either of the clinics you suggested.
I hope that my comments wont cause worry for anyone having botox injections for migraine. What happened to me was quite possibly not connected to the botox, and my neurologist thought this too, although he did submit an adverse event report just in case. Its just been hard not having any anwers to anything all this time
Oh yes, I'm in the USA. Gosh, I forgot you might not be. I'm sorry! Ha. No, the Botox never helped my migraines. After 3 rounds of shots I stopped.
Hi Jackie.. I am so sorry you had such a bad experience with botox injections. I have been doing botox treatment for migraine for past one and a half years, injections every four months. I never had any problems that longed more than a week. Those injections are a bit painful and sometimes feels a little dizzy after the injections but they go away pretty quickly. I remember something my doctor said that these injections can cause side effects on certain patients but not everyone. I think you might be one of those unlucky ones. And it is better to make sure your doctor has done professional botox training course from any reputed institutes cause doctors who do the botox treatment without good training also can cause side effects.
So they work good for u.. I'm so ooooo thinking about it... ,, so hard working 12hrs shifts 46hrs a wk. Going and paying for a chiropractor and a massage every wk..and still having headaches all time. .
Ive just had mine in the UK and did interrogate the nurse before hand, The nurse in the Uk is a Distonia nurse, who treats people with Stiff necks, i was told that due to how much Botiox they use and how deep they should go, differs on treatments for Migraine, so the horror story of Droopy neck and Droopy Eyes, should not in the most effect us. I had over 30 Injections consisting of the following
a finger width above the brow and in the central forehead in a circle.
Over eash ear from the back to the front.
a cluster of 14 in a triangle at the back of my neck.
so far ive had no reaction apart from one, i noticed my right arm felt like it was about to get Pins and Needles ached a little, i thought i was on my way out heart attack... but its now gone.
I go for the 2nd lot Oct 14th, has it made any diff, well my wrinkles have gone. headaches seem kinda better but nothing fantastic. im only 2 weeks in so heres hoping.
Hi Jackie,
I'm so glad I read your post. Like you, I have had lot of unexplained generalised symptoms including numbess, pins and needles in my feet, legs, arms, hands and on my face, some general fatigue, memory loss and reduced ability to concentrate. The symptoms come and go and seem to be worse at the end of the week when I am very tired. I had an eyelid lift in March and had a lot of muscle twitiching in my right eye afterwards so had a tiny amount of botox to help that which it did temporarily. The symptoms started in June so were delayed. Like you I've had an EMG, MRI and a complete neurology work-up and everything was negative (prasie the Lord!) but still it's quite frustrating to have these symtoms re-occur.
I'm beginning to believe that maybe the case. Cliff note version..I was diagnosed with cervical dystonia about 10 yrs ago. As was my mother. We started getting botox injections every 3 months give or take as we could afford. I will save you the host of other issues I have except to say in hind sight they've gotten progressively worse since onset of botox. To the point that this year I had to quit my nurse manager job and am barely working pool. My last botox was 10/14. On that day neuro said I didn't have reflex in my right ankle. (New). With severe sacroiliac pain he was thinking stenosis. Immediately had severe pain and weakness right shoulder. Thru the year I began with: occasional swallowing problems with solids, probably central apnea (takes 2-3 hrs. To get conscious in am & I have no memory of it) my ankles are painful and it's getting difficult to walk, was just in am now off and on thru day. I saw new neuro. I now have no reflexes either leg knees down. I'm ataxic to the point of chorea. My handwriting is terrible. Memory bad. Got lost driving x1. Auditory hallucination x1. I've completed full work up and will be going back for her assessment. I sleep about 20 hrs per day. Also I have multi drug hypersensitivity syndrome. I've had 2 near fatal reactions, another hospital visit and 5 other meds I can no longer take. All unrelated, unpredictable and either 1-2 months before reaction or I've taken med multiple times. My other concern is I had a cousin who had devastating childhood reaction to pertussis vaccine that left him profoundly brain damaged. The old pertussis vaccine was a whole cell toxin with similarities to botox.
Yes! I just had my first treatment last week and found your inquiry this morning. Two nights after the injections, I awoke with the worst pins, needles, swelling and pain in my hands, feet, toes and and fingers. I work in the restaurant industry and am terribly concerned about losing my income as the swelling is getting worse I am staring to lose stregth and grip in my hands. As soon as get home from work all I can do is fall onto the couch with exhaustion. I'm soo tired and all of my muscles hurt horribly. Now that I found your post, I feel confident I'm not the only one who has experienced this side effect and will contact my neurolgist. Not that she can do much, but at least I know it's the botox and not something else. Of course, my migraines are better... Thank you so much for your post!!
The data is limited but there are a few studies showing adverse reaction from botox related to spread from sight of injection, neuromuscular disorders, brain damage in small group. I've been getting botox for about 10 years for cervical dystonia and migraine. Get injections in head, neck, and shoulder. I have a long history of severe adverse drug reactions. My last injections 10/14 neuro told me I had no reflex right ankle. Since my chronic health problems have gotten much worse. Dysphagia, fatigue, sleep disorder etc. New neuro now tells me no reflexes either leg knees down. I started looking into botox.
Hi I am due to have botox for my migraines in the next couple of weeks. Although I am having migraines/auros everyday (since July) and am currently off work and living off high doses of medication that appears not to be working, I am unsure of botox. I already suffer from chronic joint pain and other illnesses so do not want further joint pain. Has anyone had botox and already had chronic joint pain? Thanks
I had two rounds of Botox for migraines. The first month I had severe chest pain, but did not relate it to the Botox. After my second dose, three months later, I had severe anxiety that caused me 3 ER visits and a 6 day hospital stay. I was put on medication which I still take. Thankfully, after 12 weeks the anxiety did subside. I am still having other mysterious pains and also lots of headaches. The biggest challenge is finding a dr to listen and admit it is Botox related. I have heard there is no testing or treatment for Botox adverse effects. I am hoping time will heal. I have some good days, but mostly miserable.
Hi
I had my first round of botox start of April and spoke to my migraine nurse at the hosptital last week because I had severe migraines. She said that some people don't get any relief until the second lot. I haven't had any other symptoms though just the same as before the botox but more severe.
Have you spoken to a migraine nurse at your local hospital. Another thing you could do is to go onto the migraine action website. They have a migraine nurse who you can speak to and she may be able to offer you advise. You have to pay to speak to her but she is qualified and suffers herself. Hope this helps.
Claire
Hi! I got xeomin inject in my forehead about a month ago for migraines along with some restalyne for vanity. A week later I got a migraine and threwup. Now it is a month later and I have tingling in my hands and feet and last night I woke up screaming from my hands burning from the inside. It is Sunday so I can't get to a doctor. I am terified that I will now have permanent nerve damage. Has anyone else had this happen and resolve.
I am in the US and I had the EXACT sane experience after Botox. I have been to every doctor and had every test there is. Finally I found a doctor who believes me. I am praying I can get this out of my system. It's been two and a half months and I have had minimal progress. Dr said it could resolve or not. I feel so stupid for going to a new doc. Please reply I would love to "talk"...