Has anyone had neurological problems after Botox treatment for migraine?

Many people seem to develop auto immune disorders after Botox treatment. Or, symptoms mimic auto immune disorders. It's worth getting checked out by a good doc.

What kind of vasculitis? Can you describe it? Is your nerve pain worse close to the skin? I have some muscle popping but very little. EMG normal. Very interested as vasculitis was rled out but my doc mentioned something about small fiber vascultits and even wanted to try Cialis (yes, that drug) as it apparently is sometimes used as a diagnostic tool and treatment.  

I was tested for autoimmune and had a high ANA but a negative dsdna and negative for second confirmation or any other sub genres like Sjogren's etc. If what you say is true that is very concerning that I could have developed an auto immune. Is there any chance the stuff will get out of my system and this situation will resolve? I'm on Lyrica now and it helps a litlle but I am so upset I got the injections. 

From info that I have read on other websites, yes, eventually most see improvement over time. I am also upset with myself for getting the injections. I am 6 months out from last injections and have improved. There is hope. 

hi, yes nerve pain all over my skin at one point like a type of neuralgia pain. It is intersting to me that your doc ruled out vasculitis. What kind of doc ruled that out? There is currently no formal blood test for that. 

My particular form of vasculitis is probably not what you have but thre are several with overlapping symptoms. If you have high ana levels this is indicative of lupus. 

Do you have any experience of redness in face neck or chest?

Robin looking at your comments the headache you describe is identical to my experience. The botox thing is - I think - a red herring. But also interesting to note people with vasculitis can often have quite severe reactions to medications. We all in our support group have allergies to certain things and react badly to a lot of meds. Are you in the states ?

please google Lupus and migraine. I am not allowed to post links here so can't  but if you google it will come up with related articles about Lupus. If  you do have something auto immune it didn't start with the injections. You got the injections because of migraine. It was already working on you. Many people I know with vasculitis have tried botox injections for their migraine x

no i have no symptoms of lupus so my rheumy says there is no way to treat with only that one high ANA test and the nerve pain, because so many other things could be causing it. Went to two others who said the same thing. Watch and wait. So far nothing. That was a few months ago. All they suggeted was a re-test and evaluation in six months. Even if it is that I would have to wait for it to manifest since there was no confirmation of the disease. I am so scared and mad at myself. Could Botox cause autoimmune or was it already there?

Yes, I am in Los Angeles. I had blood tests done for vascultis and a CT scan of my heart as well as sonogram. What other tests are there and how would vasculitis connect to the fmall fiber nerve pain?

ok well it's a 'wait and see' situation. I don't think the Botox caused anything to go wrong to be honest. I hope it does clear up. I have Behcet's by the way, very similar to Lupus but not. There are a lot of auto immune disorders which have similar symptoms. If you google vasculitis or auto immune disease it will give you a list of the types of symptoms. Remember though, some people will have lots of symptoms and some won't have many. I hope you get answers Robin. I know how frustrating it is. I saw a rheumatologist for a long time who was no help to me whatsoever and that's why I moved to specialist in vascuitis. 

I didn't get the injections for migraine, just vanity. It had never worked on me before. This particular well known surgeon said he had a particular technique which is the only time it worked and it was about two weeks to three weeks later when this started.

Vasculitis causes widespread pain and syptoms. I had electric shock pain in my face, jaw....lots of nerve pain. There is no blood test currently for vasculitis. Doctors say stuff like that which amazes me. It is normally diagnosed on history. 

I am 5 months out and somewhat improved but I am praying this gets better. I am on Lyrica and anti depressants it is small fiber neuropathy and I am certain that Botox is connected and all other pathology is nil. That's the only thing I did and there is warning on the Allergan website so....hope you are well

I just got a positive ANCA test and my rheumy is saying vasculitis. Terrified. Any advice

Old post but just DXD w vasculitis. Help! I am so scared. Hopefully small vessel but they are checking my lung Bc there's some thickening there...

hi there, I am so sorry for you. I just want to reassure you, this is obviously a terrible disease but there are so many forms of treatment out there now. Where are you being treated?? Which hospital are you being seen at? 

Just read over the post again and see you are in the States. I am not so familiar with hospitals there and also I wanted to recommend a great facebook group but they are in the UK. But you should look on there. 

I wonder what type of vasculitis you have. Have they offered you any treatment yet?

Well the thing is Robin, vasculitis can cause all kinds of nerve pain. It can affect your central nervous system so that can cause all kinds of problems in your system. This is what happened to me. But, I am currently in remission. I have no symptoms at all at the moment. And the good news is, the earlier you are diagnosed the better your system will respond to treatment. 

I would be interested to know what kind of vasculitis you have. Though that is always difficult to answer especially early in the diagnostic process. 

I don't know what kind but as I said they are look at lung thickening and a 6mm nodule and Neuropathy and test results. More tests coming back Monday. I am so scared and MAD! Months ago in fact after your post I mentioned this to my Then rheumy and doc and they dismissed it out of hand. I could have had a dx months ago! I live in Los Angeles and would either be at UCLA or St Johns maybe Cedars. I can't believe it frankly. I am praying that the five month lag time wasn't enough to make things much worse. What treatments did you do? I am afraid of steroids and as this is LA everyone e just tells me to meditate and take megadoses or tumeric...any advice? I feel so alone and angry that doctors ignored all the signs and my questioning....you are in remission? I want this over with. I am not a mellow person as a former New Yorker I am trying to be a "lotus" but I am a withering weed!!!!

So sorry Robin, I feel your pain. I can't even advise you on treatment at the moment except I am pretty confident turmeric will make very little or no difference. There are many treatment options. available for vasculitis and it depends on the type of vasculitis. The time lapse I think is not too important. It can progress very very slowly. 

I know you're scared and I understand why. I was living with it for so long and no one listening I was just glad to get a diagnosis to be honest! You have actually caught it reasonably early. I think the situation, as with a lot of illnesses, is the earlier you get intervention the better in terms of how effective it is.

I highly recommend you speak with the Vasculitis Foundation in America and ask them for a bit of advice on treatment. I would not be confident advising when you may have a different type of vasculitis to me. 

I got remission from using interferon Alpha and mycophenolate in combination. I didn't suffer any awful side effects and am currently in remission 3 months down the line from stopping interferon. I am keeping my fingers crossed it continues. But a lot of drugs have side effects and downsides. You must try to find, with your doctor, something which will work effectively for you. What are your current symptoms? 

It began w Neuropathy all over pins and needles six months ago and that has subsided a bit. Along the diagnostic route they did act of my sinus and lung Bc it was discovered I had asthma.. there is some bronchial thickening and a 6mm nodule which is prompting my rheumy to want to do another ct but it would be the second in three months. I don't want to feed the beast....spoke to vasculitis foundation and they said to get a second opinion from someone here who only takes referrals so that's tough. The woman I spoke w said that it might be gnarly at first but if there is lung involvement in gonna have to go.nuclear. Can't sleep on psych meds harrowing last six months...hopefully this will end. It's hard not to stress out over this and I am doing the best I can which on some days is just sit on the couch and cry while the holiday season surrounds me.

What is gnarly?? Is that a mistype? 

Haha! No it's an expression.it means scary

oh yes of course! I was being dim. lol x 

Anything you want to ask please do. I will help in any way I can. Let me know the outcome of the tests you are undergoing. Best wishes to you. 

My dr wants to do another ct scan and I think it's unwise Bc the last one was three months ago and sent my body into a neuropathic rage pins and needles everywhere. I am going to push for an MRI since the module he is looking at is 6mm. Did you have multiple cts? I'm afraid the radiation will further damage my immune system as it looks for damage. If it's alright I may contact you tomorrow when I get my other tests back. It helps to "speak" w you. did you use complementary therapies like accupuncture etc and did they help?

God I have had lots of scans over the years. Yes let me know how you get on. No to othee therapies. Maybe I should have tried. Must ask my group if anyone has tried and how successful they have been.

Hi Robin,

I have the same journey as you. I wanted to see how you're doing now? I was getting Botox for a year and a half with no issues for chronic migraine and occipital neuralgia. But after my injections in August, I've had severe insomnia in the form of hypnic jerks and heart palpitations, only when I'm falling asleep. I've resorted to taking Gabapentin and Flexeril (muscle relaxer) to fall asleep but I am SO groggy throughout the day now. It's so hard to get through the day!! It's also adding to my depression and anxiety. Gabapentin is similar to Lyrica, I think. 

Anyway, just wanted to see how you've been doing and if you've recovered at all. 

Hi, rj. I also have this awful issue with hypnic jerks when falling asleep, after Botox,  among many other symptoms. Initially i had them only during the night, but after 2 months they slowly started to appear also during the day, they are not very obvious, but it's enough to bother me. Do you still have them? Or you cannot tell because of the medication? How much Gabapentin are you taking and what concentration? I am taking a combination of valerian, passiflora, a homeopath called Sedatif PC and Clonazepam 0.5/0.25 or Bromazepan 1.5 to calm down these hypnic jerks.

Simona, I had these jerks for a while and got dismissed by doctors (benign fasciculations). But they started suddenly. Try a low histamine diet, mine all but disappeared on this diet, although I can get them to start again just by eating yogurt or seafood, or anything high in histamine. 

Hi, Lilum. Thanks so much for your quick answer! Did You also had these after Botox?  And how long did it take to get rid of them? I am not sure you had the same thing as i do, as fasciculations are different than jerks, they are just twiches (spasms), while jerks actually make body parts move, like a hand, a finger or a shoulder can shake involuntarily. Anyway, i think Botox triggered an autoimmune answer (or disease, i don't konw yet) and i was just about to start a diet like you said, because i read this kind of food causes inflamation, which leads to autoimmune diseases. I din't know if it will help, since all started after Botox, but i don't have other choise  but to try. I am also taking code liver oil (which also has vitamins A and D), vit C, zinc and i want to try some detox suplements like Chlorella and a local mix of many detox herbs. Thanks again for your answer! 

I had both fasciculations and those jerks and jumps you might get before falling asleep, except I’d have 20-30 of them. Went to mass general in Boston to neurology for an eval, thank god no MS or other terrible diagnosis. They lasted almost ... i want to say seven-eight months, and got better fast once I stopped high histamine foods. I also stopped taking supplements except vitamin c,  I feel they irritate my system. I do Epsom salt baths and acupuncture and take .25 klonopin every night. I think it helps. Good luck!

Klonopin does help with the jerks, it's one of his main prescriptions, and it's the same thing that i take every night ( Clonazepam), but i feel like i became dependent of it and i want somehow to get rid of it, to get rid of these jerks without having to take it at all. It's a benzodiazepine and it creates tolerance and dependence. Maybe this diet will help me get rid of the jerks without having to take Clonazepam anymore. Thanks!

Omg....and this is why I'm here! I am about to have my 3rd round of injections with no adverse side effects...I already presented with neuropathy of my left side so those things never would phase me if they presented themselves. However I fell and ironically they found 2 large masses in my lung they have ruled out for cancer n my question was is it a side effect or is it coming from the boxtox...wondering was any other patients with this issue!?!?

Hi Deborah3 I was wondering if you are feeling any better? Hopefully yes. If so how ling did it take to leave your system? im at 4 months and still having relapses with anxiety depression and anxious feelings. Also blurry vision at times. botox was the worst decision i ever made will

never do again. Just wishing these symptoms would all go away

Hello. I just wanted to state the horrible effects that Botox injections for treating my migraines has done to my body. My last Botox injection was in September, 2018:

high anxiety

fear

extreme muscle weakness

double vision

difficulty swallowing

excessive tiredness

joint pain

running out of breath easily

urgency to urinate

speech alterations and difficulty speaking

pain at injection sites (above eyebrows)

I used to have frown lines (between eyebrows)

now I have horizontal lines across my forehead

dry throat

cough

bad taste in mouth

hair loss

lower back pain

I didn't realize all these problems were caused by Botox injections until I saw a commercial on TV. It advertised a telephone number:877-351-0300 that I called to request a hard copy of Botox information to be mailed to me on March 4, 2019. I left my name and mailing address on a recording, but I never received anything in the mail. I called again in May 2019 and June 2019......but to no avail.

My heart goes out to all of you suffering the terrible health issues you've received by getting Botox injections. I know what you've been through. Everyone take care.

Hi LittleVallie, It's been 2 years since I received botox in my 11's and above my eyebrows. I still have symptoms from it including all the ones you listed. I called the makers of botox when I first saw symptoms and they told me over the phone that they will take down all my symptoms and send it to the fda. I asked the woman on the phone if these are all the side effects from it and she said it was a possibility. She wasn't helpful. Just wanted all my symptoms. Which over the 2 yr course and still going on is a huge list of at least 50 symptoms. It's sad to be honest. I am in medical debt from going to the ER and to different Doctors and specialists. I recently also had my breast implants removed because I didn't want that poison in me any longer. I hope to over come this one day. It's like I'm not even who I used to be. I look in the mirror and don't see the same person. I wonder if this will go away or not? I have questions but no answers. All I can do is pray and try my best to take care of my kids. Botox robbed me big time. My life, my happiness, being a wife and mother I'm not the same. It's hard to smile going through this. I wish I would've done my research before I was dumb and got it.

Daniella, I am so sorry to read of your devastating side effects. It's frustrating because when I reported that the symptoms didn't subside after a year, I was told by a few doctors that there's no way Botox injections could still be the cause of all my side effects after such a long period of time. Please don't consider yourself dumb for having a lack of information. There seems to be a lot of us unknowing patients. It's such a shame your medical costs have been so greatly affected. Please continue to pray; and although finding happiness is a struggle for you right now, try to be the best mommy you can for your children. I hope your husband is sympathetic and supportive. My heart goes out to you, Daniella. I'll pray for you.Sincerely, Your sister in the Botox Hope for Relief Club.