I had always gone to Cleveland Clinic for my complicated medical care since I was first diagnosed with chronic migraine in 2002. But in 2014, I was living 5 hours away from Cleveland and tired of the drive. My migraines had increased again, and I was beginning to feel like I needed a fresh opinion. A new "headache clinic" had recently opened in Indianapolis and I was interested in seeing if this doctor could offer me some type of new innovative migraine treatment.
I wish someone had staged an intervention right then. You don't go from seeing world renowned doctors, to a self proclaimed headache specialist. It would be like shopping at Neiman Marcus your entire life and then suddenly deciding to only shop at JCPenney.
This Headache Clinic really only consisted of one doctor and his office staff as he had no nurses and no other partners. On my first visit this doctor read my medical history very quickly asked if I had heard of Botox for Chronic Migraine, because apparently I was a perfect candidate for it. At the time I was an exhausted stay at home mom with three children ages 4 and under. My screen time consisted of Disney, PBS Kids, and nightly binges on Netflix. So no, I had not heard of Botox for Chronic Migraine or seen the commercials. Dr. Botox, as my husband and I unaffectionately nicknamed him, convinced me it was the only way to go because I had already tried everything, And he was mostly right. Botox is often a last resort for migraineurs. To get approval, the paperwork is extensive and a patient has to prove they have tried prophylactic medicines from several different categories and different alternative therapies. The doctor's office set out to get pre-approval from my insurance company and I waited patiently. I didn't bother to do any of my own research and just decided Botox was my answer.
HOW DOES BOTOX WORK FOR MIGRAINE?
Botox is a type of Botulinum toxin, also known as
OnabotulinumtoxinA. It is a neurotoxic protein produced by bacteria and it is the same toxin that causes a life-threatening type of food poisoning called botulism. Botox has been used
to treat medical conditions since the 1970s, and is being used
to treat at least 20 different conditions today. Like several other migraine treatments, Botox
for Chronic Migraine was discovered when patients getting botox injections for other reasons, reported a reduction in the frequency of migraines. After several clinical trials, Botox was
approved for use in migraine in 2010 by the FDA when Allergen, the makers of
Botox, presented evidence from two studies showing improvement in migraine patients. (1)
It is not entirely understood how botox works in the
prevention of migraines. We do know the neurotoxin in botox when injected, is
poisonous and destructive to nerve tissue. Botox weakens nerves and muscles and also blocks certain chemical signals. (2) Many of
these nerves and muscles the Botox weakens are also involved in
migraine pain. It makes sense Botox has the potential to help those with
chronic migraine because it deadens the nerves that would otherwise be sensitive to
pain.
Botox therapy is recommended only for adults with chronic migraine who
have 15 or more headache days a month. It is not approved for those who have 14
or fewer headaches a month. Allergen claims the
treatment can help to prevent headaches and migraines before they start and will prevent an average of 8-9 headache/migraine days a month.
(3)
POTENTIAL SIDE EFFECTS
One of the
dangers of Botox is the spread of toxins which can take place days or even weeks
after injections. The following is information taken from
the Botox website on these possible side effects:
- Problems swallowing, speaking, or breathing, due to weakening of associated muscles, can be severe and result in loss of life. You are at the highest risk if these problems are pre-existing before injection. Swallowing problems may last for several months.
- Spread of toxin effects. The effect of botulinum toxin may affect areas away from the injection site and cause serious symptoms including: loss of strength and all-over muscle weakness, double vision, blurred vision and drooping eyelids, hoarseness or change or loss of voice, trouble saying words clearly, loss of bladder control, trouble breathing, trouble swallowing.
- Serious and/or immediate allergic reactions have been reported. They include itching, rash, red itchy welts, wheezing, asthma symptoms, or dizziness or feeling faint.
- BOTOX® may cause loss of strength or general muscle weakness, vision problems, or dizziness within hours to weeks of taking BOTOX.
And after this long list of possible symptoms, the Botox
website goes on to state:
- There has not been a confirmed serious case of spread of toxin effect away from the injection site when BOTOX® has been used at the recommended dose to treat chronic migraine.
I wonder what Allergen and the FDA deem “serious?” Death?
BOTOX HELL
July 3rd of 2014, day of my injections, I
sat across from Dr. Botox and asked him to go
over all potential side effects associated with treatment. I am very sensitive and often
react unfavorably to medicine, I told him. Dr. Botox smiled and told me the
worst side effect would be a droopy eyelid, but it was unlikely to happen as long as I didn't touch my forehead for a few hours. I smiled back and told him if he had any left over to feel free to inject around my laugh lines. Then I was asked to sign a waiver
stating I wouldn’t hold him responsible for death or any other possible act of God. I was told it was standard procedure and I naively
signed it.
The injections that went into my forehead, head, and neck
took around 15 minutes and felt similar to 31 bee stings. It wasn't horrendously painful,
but I do remember wondering why anyone would choose to put themselves through this for cosmetic
reasons. (I was only 35 then, now I get it.)
In the days following my botox injections, my neck became so stiff it hurt to
move, but I powered through and it eventually went away. It wasn’t until nearly a week out, the mind-numbing fatigue came over me. I couldn’t keep my eyes
open and even after resting, I would wake up feeling the same severe fatigue. Having
struggled through Hashimotos/Hypothyroidism most of my life, I
was used to dealing with fatigue, but this kind was different. Then, a few days
later strange symptoms surfaced and I honestly thought I was going into psychosis. My eyes completely dried out and I was unable to wear contacts. I also started having problems with my vision. Then another day I woke up to dizziness and nausea, followed
by muscle aches and all over body weakness. I felt like I had the flu. And
the final symptom to come was numbness and tingling in my hands and down my right leg. I had no idea what
was wrong and refused to believe this could have anything to do with the botox. I visited urgent care where they tested me for mononucleosis, but it was
negative and the doctor suggested I call my neurologist.
On Monday morning I called the office, spoke to the receptionist, and asked if any of this could be Botox related. Dr. Botox responded quickly saying, "there was NO WAY" this could be caused by Botox and I needed to consult my PCP (Primary Care Physician). My PCP saw me immediately and after running a few tests, told me he was pretty sure it was a bad reaction to the Botox as he had seen this one other time in his career. He pulled up the Mayo Clinic website on his computer and began reading to me the list of potential side effects associated with Botox for Chronic Migraine. I was shocked and angry. He assured me I was not going crazy, this was very real, and again he had seen one other lady react to botox this way. Even though my doctor was convinced of this, he still ran a litany of blood work, testing me for autoimmune diseases that lined up with my symptoms. I tested negative for all of them. My PCP assured me, as bad as this was, it would clear up in around 3 months when the botox was out of my system. Three months? I was a stay at home mom to three little kids, 4 year old twins and a two year old!
On Monday morning I called the office, spoke to the receptionist, and asked if any of this could be Botox related. Dr. Botox responded quickly saying, "there was NO WAY" this could be caused by Botox and I needed to consult my PCP (Primary Care Physician). My PCP saw me immediately and after running a few tests, told me he was pretty sure it was a bad reaction to the Botox as he had seen this one other time in his career. He pulled up the Mayo Clinic website on his computer and began reading to me the list of potential side effects associated with Botox for Chronic Migraine. I was shocked and angry. He assured me I was not going crazy, this was very real, and again he had seen one other lady react to botox this way. Even though my doctor was convinced of this, he still ran a litany of blood work, testing me for autoimmune diseases that lined up with my symptoms. I tested negative for all of them. My PCP assured me, as bad as this was, it would clear up in around 3 months when the botox was out of my system. Three months? I was a stay at home mom to three little kids, 4 year old twins and a two year old!
The weeks that followed were my personal hell. I couldn’t
keep my eyes open. My muscles felt so weak I had difficulty climbing the stairs
and raising my hands to wash my hair in the shower. My oldest daughter found me one morning passed out in the hallway after I had attempted to get to the bathroom
on my own, but was too dizzy. I had so much nausea, I couldn’t eat. At night I would hug my kids tightly because I wasn't entirely convinced I would wake up the next morning. Instead, I did wake up every morning and the cycle of torture would begin all over again.
My husband lost countless days of work to take care of me and the kids. Some family and friends rearranged their lives to come and help us. But the most difficult thing for me, was seeing the fear instilled on the faces of my sweet children as they watched their mother who used to plan fun activities during summer days, deteriorate and become unable to perform small daily tasks. During that time, I made three phone calls to Dr. Botox, demanding he return my calls, but he never did. I spent countless hours on the phone with the FDA, reporting and answering their questions, but they could only resonate what I already knew; it would get better after 3 months.
I consulted with other doctors and most had never heard of such a thing. It was implied by one doctor that potentially I had seen a list of botox side effects and imagined I had them. They were just a figment of my imagination. Feeling alone and half crazy, I did the thing all doctors hate for their patients to do and began searching online for information, desperately trying to find evidence of this happening to other people. And I did. It was difficult as I had to dig deep. I found a few stories, mostly in relation to reactions of cosmetic botox. But then I stumbled upon a small community of people who were treated with botox for different medical reasons and also had a bad reaction. I was finally convinced I wasn't crazy. After reading story after story of people who had similar symptoms as me, some worse and some just different, I found out most of us shared at least one other thing in common: the doctor who performed the botox injections didn't believe Botox could do this to a person.
My symptoms began to slowly improve sometime after 6 weeks and I regained my ability to easily climb stairs and perform daily tasks. After eight weeks I saw a lot of improvement. Later, I found out I shared something else in common with the people in this community. Even at nearly 7 months out, I still had some of the residual side effects, like dry eyes, slight muscle weakness, and those strange tingling sensations. I just didn't feel the same.
I saw a doctor at Diamond Headache Clinic in early 2015 and she believed my story. Diamond does hundreds of botox injections each week, and this doctor said she had seen what happened with me maybe less than ten times. But she had seen it. I wasn't crazy and I wish doctors didn’t have so much faith in the drugs they prescribe. And I wish when doctors are unable to find a logical medical reason to explain patients symptoms, they didn't just push it off as anxiety and stress or hypochondria. I wish I could have back all the time I lost to botox, and I wish I could erase the memory of the look on my small children's faces.
My husband lost countless days of work to take care of me and the kids. Some family and friends rearranged their lives to come and help us. But the most difficult thing for me, was seeing the fear instilled on the faces of my sweet children as they watched their mother who used to plan fun activities during summer days, deteriorate and become unable to perform small daily tasks. During that time, I made three phone calls to Dr. Botox, demanding he return my calls, but he never did. I spent countless hours on the phone with the FDA, reporting and answering their questions, but they could only resonate what I already knew; it would get better after 3 months.
I consulted with other doctors and most had never heard of such a thing. It was implied by one doctor that potentially I had seen a list of botox side effects and imagined I had them. They were just a figment of my imagination. Feeling alone and half crazy, I did the thing all doctors hate for their patients to do and began searching online for information, desperately trying to find evidence of this happening to other people. And I did. It was difficult as I had to dig deep. I found a few stories, mostly in relation to reactions of cosmetic botox. But then I stumbled upon a small community of people who were treated with botox for different medical reasons and also had a bad reaction. I was finally convinced I wasn't crazy. After reading story after story of people who had similar symptoms as me, some worse and some just different, I found out most of us shared at least one other thing in common: the doctor who performed the botox injections didn't believe Botox could do this to a person.
My symptoms began to slowly improve sometime after 6 weeks and I regained my ability to easily climb stairs and perform daily tasks. After eight weeks I saw a lot of improvement. Later, I found out I shared something else in common with the people in this community. Even at nearly 7 months out, I still had some of the residual side effects, like dry eyes, slight muscle weakness, and those strange tingling sensations. I just didn't feel the same.
I saw a doctor at Diamond Headache Clinic in early 2015 and she believed my story. Diamond does hundreds of botox injections each week, and this doctor said she had seen what happened with me maybe less than ten times. But she had seen it. I wasn't crazy and I wish doctors didn’t have so much faith in the drugs they prescribe. And I wish when doctors are unable to find a logical medical reason to explain patients symptoms, they didn't just push it off as anxiety and stress or hypochondria. I wish I could have back all the time I lost to botox, and I wish I could erase the memory of the look on my small children's faces.
I finally had a phone
conversation with Dr. Botox four months after my injections. It only took place because of some "promises" my husband made to his office staff if I did not hear from him. That conversation was....interesting. I got a lot of excuses from him about how he handled my situation, a lot of blame was cast on his office staff, and I didn't get a real apology. He claimed in the 12 years he had been doing Botox, he had
never seen such a reaction. The more likely story would be he probably just didn't listen. Ironically, Dr. Botox closed down his practice last summer and joined the largest Neurology group in Indianapolis. Most doctors in Indianapolis, no matter what network they are in, refer their patients to this group. I truly hope Dr. Botox learned from my case and became more open to the possibility that, when you inject toxins into someone’s head, it is possible for bad side effects to occur.
As for me, I went running back to Cleveland Clinic and found a new headache specialist who has proved to be helpful and caring. I learned a lot about my own body through this botox experience, and I like to think it was the start of motivating me to take control of my own health. I began a journey of seeking out alternative therapies for the treatment of my migraines and other chronic health conditions and eventually stumbled upon the right group of people to help me.
1. Walsh, S. "FDA approves Botox to treat chronic migraine". FDA Press Releases. Retrieved August 20, 2016.
As for me, I went running back to Cleveland Clinic and found a new headache specialist who has proved to be helpful and caring. I learned a lot about my own body through this botox experience, and I like to think it was the start of motivating me to take control of my own health. I began a journey of seeking out alternative therapies for the treatment of my migraines and other chronic health conditions and eventually stumbled upon the right group of people to help me.
1. Walsh, S. "FDA approves Botox to treat chronic migraine". FDA Press Releases. Retrieved August 20, 2016.
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