POSTED UNDER Botox REVIEWS
I Contracted Iatrogenic Botulism from a Botox Injection to Glabellar Lines - Skokie, IL
ORIGINAL POST
If you have never had botulism, there is almost no...
BitofHelpMarch 11, 2015
$300
If you have never had botulism, there is almost no way to describe the suffering, misery and terror of this experience.
Do not believe anyone who tells you you can *never* get botulism from a "cosmetic dose" of Botox. It's not true. I am sitting here typing this; I have botulism, and it is brutal. Having your face wrecked ( and it is wrecked) is one thing; having your entire nervous system, yes including your stomach and digestion, breathing, metabolism, cognitive abilities and sex hormones destroyed is something else again. This does happen, it has happened to me, and there is NO cure, and no medicine that will fix it. I will have to wait, potentially years, for my body to heal the damage on its own.
People like me show up in the ER. We don't know what's wrong. No one else knows what's wrong. It is possibly meningitis. The arms don't work, there is hemiparesis, the entire head is paralyzed and it is confusing at first to begin to realize the paralysis is descending. My paralysis went into my arms and took my hand and finger dexterity. I could not type or sit up for many weeks. It went into my psoas muscles, my spinal cord, and paralyzed my vagus nerve.
We're given medicine that is hugely contraindicated in a case of botulism because even if we wonder out loud if it could be the botox we'll be told no,that's impossible. Eventually we'll end up in the neurologist's office with dysautonomia, postural hypotension, tremors ( which will be named "anxiety" even though it's the effect of a strong neurotoxin), painful muscle spasms, migraines, occipital neuralgia, gastroparesis, bladder and bowel emptying issues, what feels like arthritis, vertigo, hearing loss, loss of taste, loss of smell, fasciculations, intractable angioedema, chronic kidney problems, and all the rest. Anxiety, racing heart, convulsions, double vision, strabismus. Wow, all the "side effects" listed on the tin that the doctor told you were impossible to contract via a botox injection.
The neurologist will treat the symptoms if possible. Some just have to be managed with careful living. There is no cure.
10 to 150 thousand dollars later, you will realize that no one can help you and they don't know why it happened and they don't know what is wrong. The person who injected you will insist, even though you are standing right there quite *evidently* partially paralyzed and poisoned like a rat in the web of a spider -- that "botox doesn't do that."
Botulism doesn't "just go away." People with systemic botulism poisoning take a year to five years to recover, but the damage to the body is so catastrophic and longlasting eventually it does not matter if you have recovered or not. There is no going back. It's very realistic to lose your job, your relationship, your savings and the entirety of your lifelong health to this toxin. Botox also has subclinical symptoms -- you know those "flu like symptoms?" It's botulism. Other things -- sudden hot flashes, night sweats, gastrointestinal dysmotility, sudden asthma...this is all systemic botox poising if you are getting injections. You'll go in for your top-up and call a week later, wondering if it's the poison that was just recently injected into you that is making you sick, and the "nurse" will tell you that is impossible.
No it isn't. But it will be way too late to do anything about it.
I am going to be sick for a long time. Maybe for the rest of my life. I hope that is not true, but it is absolutely possible, just like it's absolutely possible to be irreversibly poisoned from a cosmetic botox injection. The problem is that when the toxin goes systemic, it tricks you into thinking you are getting better only to present a relapse months later, and then months after that. Why is there a relapse? Because the toxin has damaged the CNS and as it is trying to make sense of its paralysis it keeps switching over functions to other neurons and then switching them back again when they seem functional. Pain is referred, symptoms are dormant and then start up again. All systems in the body are permanently weakened. So I, and people like me, will always be less functional, and chronically ill. It is a life cut short.
When your entire head is paralyzed all the cranial nerves are under enormous stress. In my case, the paralysis caused massive swelling at the back of my head and caused cerebellar damage. I still can not taste food. I still can not smell anything very well. I still can not hold my head erect for long periods of time.
I did not get the care I needed because there was no acknowledgement that such a thing could be possible.
I became chronically ill from a botox injection on September 28, 2014 after partial catastrophic flaccid paralysis. It is worse in a way than being murdered. I have been terrified, bedridden, in terrible pain, unable to work, unable to drive, unable to think or plan the future because there might not be a future, really, for me, that does not involve navigating a chronic illness. What has happened to me does not just go away. In fact, it will never go away.
Believe it. And believe it could happen to you.
Do not believe anyone who tells you you can *never* get botulism from a "cosmetic dose" of Botox. It's not true. I am sitting here typing this; I have botulism, and it is brutal. Having your face wrecked ( and it is wrecked) is one thing; having your entire nervous system, yes including your stomach and digestion, breathing, metabolism, cognitive abilities and sex hormones destroyed is something else again. This does happen, it has happened to me, and there is NO cure, and no medicine that will fix it. I will have to wait, potentially years, for my body to heal the damage on its own.
People like me show up in the ER. We don't know what's wrong. No one else knows what's wrong. It is possibly meningitis. The arms don't work, there is hemiparesis, the entire head is paralyzed and it is confusing at first to begin to realize the paralysis is descending. My paralysis went into my arms and took my hand and finger dexterity. I could not type or sit up for many weeks. It went into my psoas muscles, my spinal cord, and paralyzed my vagus nerve.
We're given medicine that is hugely contraindicated in a case of botulism because even if we wonder out loud if it could be the botox we'll be told no,that's impossible. Eventually we'll end up in the neurologist's office with dysautonomia, postural hypotension, tremors ( which will be named "anxiety" even though it's the effect of a strong neurotoxin), painful muscle spasms, migraines, occipital neuralgia, gastroparesis, bladder and bowel emptying issues, what feels like arthritis, vertigo, hearing loss, loss of taste, loss of smell, fasciculations, intractable angioedema, chronic kidney problems, and all the rest. Anxiety, racing heart, convulsions, double vision, strabismus. Wow, all the "side effects" listed on the tin that the doctor told you were impossible to contract via a botox injection.
The neurologist will treat the symptoms if possible. Some just have to be managed with careful living. There is no cure.
10 to 150 thousand dollars later, you will realize that no one can help you and they don't know why it happened and they don't know what is wrong. The person who injected you will insist, even though you are standing right there quite *evidently* partially paralyzed and poisoned like a rat in the web of a spider -- that "botox doesn't do that."
Botulism doesn't "just go away." People with systemic botulism poisoning take a year to five years to recover, but the damage to the body is so catastrophic and longlasting eventually it does not matter if you have recovered or not. There is no going back. It's very realistic to lose your job, your relationship, your savings and the entirety of your lifelong health to this toxin. Botox also has subclinical symptoms -- you know those "flu like symptoms?" It's botulism. Other things -- sudden hot flashes, night sweats, gastrointestinal dysmotility, sudden asthma...this is all systemic botox poising if you are getting injections. You'll go in for your top-up and call a week later, wondering if it's the poison that was just recently injected into you that is making you sick, and the "nurse" will tell you that is impossible.
No it isn't. But it will be way too late to do anything about it.
I am going to be sick for a long time. Maybe for the rest of my life. I hope that is not true, but it is absolutely possible, just like it's absolutely possible to be irreversibly poisoned from a cosmetic botox injection. The problem is that when the toxin goes systemic, it tricks you into thinking you are getting better only to present a relapse months later, and then months after that. Why is there a relapse? Because the toxin has damaged the CNS and as it is trying to make sense of its paralysis it keeps switching over functions to other neurons and then switching them back again when they seem functional. Pain is referred, symptoms are dormant and then start up again. All systems in the body are permanently weakened. So I, and people like me, will always be less functional, and chronically ill. It is a life cut short.
When your entire head is paralyzed all the cranial nerves are under enormous stress. In my case, the paralysis caused massive swelling at the back of my head and caused cerebellar damage. I still can not taste food. I still can not smell anything very well. I still can not hold my head erect for long periods of time.
I did not get the care I needed because there was no acknowledgement that such a thing could be possible.
I became chronically ill from a botox injection on September 28, 2014 after partial catastrophic flaccid paralysis. It is worse in a way than being murdered. I have been terrified, bedridden, in terrible pain, unable to work, unable to drive, unable to think or plan the future because there might not be a future, really, for me, that does not involve navigating a chronic illness. What has happened to me does not just go away. In fact, it will never go away.
Believe it. And believe it could happen to you.
UPDATED FROM BitofHelp
6 months post
Getting Worse.
BitofHelpMarch 18, 2015
Thanks for the replies first of all. Real Self sent a followup email asking me to update my experience, and the fact is that nearly six months later I am getting worse.
People who have not seen or experienced this will quickly toss this out of their minds and reason that it must be "something else" causing such a catastrophic reaction. Such as a person's head neck arms eyes and internal organs all got paralyzed from pre-existing condition.
My body is continuing to mutate. I have episodes of massive anaphylaxis -- everything on my body swells and I turn red, the lymph nodes at the back of my head swell up and become painful and foreign. My stomach does not work well and I have mostly lost my appetite. My muscles go very weak intermittentlly -- I never know if my arms or legs are going to work or not.
In the beginning I read of people who were in wheelchairs because of this and I barely believed it. Now I understand that the toxin can enter anywhere on the body, including the brain, most definitely the central nervous system, and of course the spinal cord. The internal injuries are massive and somewhat ongoing because nothing works correctly, and no doctor is experienced or knowledgeable enough to assist in managing it.
My legs shake when I lie down and I can still only be upright for several hours at a time. So now I see how people end up in wheelchairs. Really I wonder if, over a slow inexorable time, I will be dead instead. I truly hope I am alive the next time Real Self asks me to update my review.
People who have not seen or experienced this will quickly toss this out of their minds and reason that it must be "something else" causing such a catastrophic reaction. Such as a person's head neck arms eyes and internal organs all got paralyzed from pre-existing condition.
My body is continuing to mutate. I have episodes of massive anaphylaxis -- everything on my body swells and I turn red, the lymph nodes at the back of my head swell up and become painful and foreign. My stomach does not work well and I have mostly lost my appetite. My muscles go very weak intermittentlly -- I never know if my arms or legs are going to work or not.
In the beginning I read of people who were in wheelchairs because of this and I barely believed it. Now I understand that the toxin can enter anywhere on the body, including the brain, most definitely the central nervous system, and of course the spinal cord. The internal injuries are massive and somewhat ongoing because nothing works correctly, and no doctor is experienced or knowledgeable enough to assist in managing it.
My legs shake when I lie down and I can still only be upright for several hours at a time. So now I see how people end up in wheelchairs. Really I wonder if, over a slow inexorable time, I will be dead instead. I truly hope I am alive the next time Real Self asks me to update my review.
Replies (13)
March 19, 2015
Bitofhelp.......I am in Chicago. I am horribly sick as well. I am better than it was 3 years ago.....but I am still sicker than I was right after my injections. I am 6 years post injection. I understand what you are going through. PM me if you would like to talk. There are a few of us in the Chicago area.
March 23, 2015
OMG! We should really try to connect in person if you are ever up to it. I understand how hard that might be....I still am unable to drive and am lucky to get out of bed on weekends. But let me know if u would ever be up to it. I am in the city.
August 11, 2016
Hi, are any of you available to private message? i'm researching which ERs or labs in my area will perform a mouse bioassay or another test for possible Iatrogenic Botulism. i had injections on 8/05/16 - and my symptoms mirror the descriptions of complex changing patterns described by contributors to the Botox Support Community website. Please let me know if any of you are available online - i've tried registering with the community forum for several days with no luck. Thank you so much, B
September 28, 2016
The Botox Support Community site is extremely frustrating. I joined and registered six months ago and still am not able to log in or have it accept my registration. if ANYONE knows whom to contact I would be grateful. It's sad that there are so many people trying to get on there and no one is monitoring it properly.
September 29, 2016
I have had the same problem with the Botox Support Community - registered but never able to log on....
September 29, 2016
Exactly NellyN! So while I appreciate I can access info, I am extremely upset that I can't message others. : / They should have a better handle on it or turn it over to someone who can manage it properly. Think of how many frustrated people there are? I met a gal who was injected in January and she said it took them 6 months to "approve her registration". Meanwhile, if you fill out the register now and then don't get an email, you think you did something wrong. Ugh. So frustrating!
December 15, 2016
Just to throw a little hope your way---I had three reactions to Botox as well as Dysport. The last two were severe. The medical community, for the most part (There are a few bright ones out there) denied that there was any connection to the toxin. I finally realized that my doctors were wrong. After the third reaction, all doubts were erased. I'm now five years out and feeling great again. It took a couple of years for me to feel about 90 percent better. There was some lingering neuropathy two years out, but, the insomnia, burning spine, digestive issues were long gone.
December 20, 2016
Thank you Amanda! I'm 10 months out and so freaking mentally and physically and emotionally tired of it. It's depressing to battle these same annoying and painful symptoms day after day. With no true window of when I will be back to normal. I hope Botox is banned. It's freaking awful. I would give anything to never have done it. What happened to you between years 2 and 5? Did it take a full five years to heal 100%? Please and thank you!
January 28, 2017
BitofHelp, it's been a long tine since you last posted. How are you now? I hope your symptoms have improved and sending lots of strength and hope for what lies ahead you way.
March 6, 2017
I highly recommend going to an acupuncturist. I started have symptoms (worsening paralysis) and after getting no where with my doc, I immediately went to see my acupuncturist. I felt significantly better after 1 treatment, and felt great after 3 treatments within 1 week (2 ish weeks after botox). It's been a few years and I'd love to do it again for the results, but terrified the paralysis might come back.
September 18, 2018
Hi Bitofhelp, could you tell us how you’re feeling now? I hope you’ve completely recovered
Replies (11)