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Has anyone had neurological problems after Botox treatment for migraine?

Posted , 59 users are following.

jackie75453
jackie75453

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?

7 likes, 115 replies

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  • caralleen22164
    caralleen22164 jackie75453

    Posted

    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!
    • jackie75453
      jackie75453 caralleen22164

      Posted

      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.

    • lisa29739
      lisa29739 jackie75453

      Posted

      Hi Jackie.  I realize this comment is from 4 years ago and you might not get this.  Last summer I received 100 units of botox in my armpits for sweating.  12 days later I got hit with massive light headedness and fatigue.  Several ER visits and doctor visits later- I was diagnosed with Mono.  Now- going on almost 11 months- I'm still symptomatic.  Fatigue and muscle weakness, anxiety and digestive issues.  It comes in waves and I can't seem to find a trigger.  I'm now wondering if botox is still wreaking havoc on my system (I'm still not sweating properly.) 

      Did your symptoms clear up?  And if so how long did it take? 

    • lilum
      lilum lisa29739

      Posted

      Hi Lisa,

      I also had Botox and have had a slew of symptoms. After extensive testing and research (testing by doctors, research by me) i came to the following conclusions. There are hundreds, maybe thousands of people who did NOT have Botox, who have the same symptoms. I guess that’s good and bad. Good, because Botox is not wreaking havoc in your system. Bad because you still don’t know what it is. Botox, or a virus, or an accident, or an infection, is the original trigger, and then your body, or maybe your immune system, goes nuts for a while. Sometimes for a long while, like a couple of years. Most people recover and have minimal sequels (after those couple of years of misery tho). If you can see my other postings on the site,  there is another board with very similar issues, just not Botox. I was very sure it was the Botox, and it is hard to give up cherished ideas. But I no longer believe Botox is floating around in my system, making me sick. It’s just my body, slowly calming down. Very slowly. Good luck to you, you will get better. Hang in there. 

    • lisa29739
      lisa29739 lilum

      Posted

      Hey Lilum! Thank you so much for the reply. My only test that was positive was for mono. I had seemed to start recovering in late October for 3 weeks then relapsed bad. Ever since it’s so up and down.  I’m on the mono forum here and it’s a life saver.  My natural path thinks my adrenals are toast and not putting out enough morning cortisol and that’s why I get so weak throughout the night. She just started me on a hard core adrenal support tincture but it’s almost too stimulating. It’s causing the anxiety again and shakiness. Also I’m overly sensitive to my thyroid meds now and coffee! 

      I did do the Lyme test. The first test was positive so they did the western blot but that was negative. So it’s been ruled as negative. 

      I go back to the Botox because it happened so close to getting sick and my nervous system is just fried. But hearing your words are comforting. If I could just let go of Lyme and Botox and everything else and just say Ok- mono wreaked havoc- it would help calm me down. 

    • sophia106
      sophia106 caralleen22164

      Posted

      caralleen22164-282226

      I have similar issues but I have been getting Botox for migraines for several years.

      If I’m sitting up I can bend my neck up to the sky but if I’m bending over I cannot move my neck at all.

      When the Botox wore off did you return to normal?

  • caralleen22164
    caralleen22164 jackie75453

    Posted

    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. 
    • jackie75453
      jackie75453 caralleen22164

      Posted

      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

    • caralleen22164
      caralleen22164 jackie75453

      Posted

      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. 
  • smurphy
    smurphy jackie75453

    Posted

    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
    • jackie75453
      jackie75453 smurphy

      Posted

      Hi

      Thanks for replying. Sounds scary! Hope you are okay now. Did the botox help your migraine in the long term?

       

  • arlenelm
    arlenelm jackie75453

    Posted

    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.
    • A303101
      A303101 arlenelm

      Posted

      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. .
    • dimples22382
      dimples22382 A303101

      Posted

      I hear from my holistic doctor that chiropractor and massage are one of the worst things you can do to heal. Try acupuncture (depending on damage you may want to avoid head area), magnesium foot, soaks, and baths in epsom salt. Listen to calming music in certain frequencies. Do not drink caffeine or alcohol. Do not watch sad or scary movies, the news, as they quickly send messages to your nervous system which triggers stress in your body. Stay positive and only around positive people. You will get better. It will take anywhere from 1 to 2 years to make a full recovery, but symptoms will subside sooner. Don't forget to eat healthy fats like avocados, do not eat canned foods, and eat very healthy. I was told that activated charcoal can make things WORSE! Finally, do light excersie and avoid the sun and too much sweating.

  • Tobamory
    Tobamory jackie75453

    Posted

    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.

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