How many of you suffer from medication sensitivity? I know I do. Which has been part of how I ended up trying Botox for my chronic headaches and migraines. I have tried countless other medications, which either don’t work or have had violent side effects. So when my Neurologist insisted, for over a year, that he has great results from using Botox AND that in his ten years of using it, he hasn’t had anyone suffer adverse effects from it, I finally broke down and agreed.
I had my first round of injections in September and at my insistence, we did not do the full dose of 155 units, but instead did 100. I was rather surprised that the injections were not as painful as I had sort of scared myself into thinking they would be. It’s a pretty daunting thing to consider getting 31 shots into your face, shoulders and head. A few times, my Husband and I laughed at the Neurologist saying that the injections were no big deal, they only felt like a bee sting. To be clear, that’s 31 “bee stings” in your face, head and neck. But, they really weren’t that big of a deal. The Neurologist had a Nurse with him-as he pulled the needle out, the Nurse would apply pressure. Their systematic approach to it made the process unbelievably quick and the light pressure almost distracted from the prick of the needle going into the next site. I was pretty proud of myself when the Neurologist told me that I did phenomenally well.
After receiving the 2/3 dose, my head felt a little “full”. I know that’s a rather abstract description, but it’s about the most accurate I can come up with. I left without the ice pack they offered me and was pleasantly surprised that there was no redness or bleeding at the injection sites. For a couple days after the procedure, I was tired-which is no big deal, I pretty much walk around exhausted all the time.
To my surprise, I pretty quickly got some relief from near daily headaches and/or migraines, lessening them to 1 to 2 a week. The biggest surprise though, was relief from a different symptom; the electricity that courses through my body. Let me briefly digress here…….
One of my most challenging symptoms is something that still has no diagnosis and has differing opinions from my different providers. I get what feels like electricity coursing through my body. Have you ever accidentally gotten an electric shock? That course of electricity that zings you, sending something like a vibration through your body…..it hurts, it stings, it vibrates, it burns and it seemingly courses through every vein in your body. That is what it feels like. And it’s something no one can really determine the cause of. It’s been chocked up to Restless Legs Syndrome-which when it occurs in your arms too, is called Restless Limbs Syndrome. Except the Neurologist said the other day that it’s extremely rare to have it beyond your legs. It’s also been chocked up to being my Fibro. As of last Wednesday, we’re now going to dig a little deeper to figure it out, starting with an MRI of my neck. Regardless of what it is, this particular symptom often leaves me rocking back and forth, close to losing my mind. The combination of pain, burning and vibration brings me to the brink of crying most times, praying to get through it. We haven’t had much success in treating it, but I can sometimes get it to stop with a combination of magnesium cream, muscle relaxers and pain meds. Whatever it is, it’s one of the worst aspects of all my conditions. So to realize that the Botox somehow almost completely eliminated it was almost akin to a miracle for me. My Primary Care thinks it has something to do with the Botox lessening the constant firing of my Central Nervous System, but that’s just a theory. Theory or no, I’ll take anything that lessens that bitch of a symptom.
So when the Botox not only lessened the frequency of my migraines and headaches, but also the electricity, I was really excited that something was finally working!! 3 weeks later, I hit the proverbial brick wall and it all came back with a vengeance. We thought we would get three months relief out of the Botox. Instead, it was three weeks. After vicious nightly headaches and/or migraines, I was given another course of steroids. BUT this was hope and progress!!! If I got three weeks relief from 2/3 dose, then I may get 3 months relief from a full one! I counted the time until my next round of injections. Which were last Wednesday.
Wednesday evening came and Bri drove me the hour to the Neurologist. This time, using the full dose, the injections stung a little bit more and this time, I could feel the medication being injected. Coming out of the Neurologists office, my head felt much more full this time, almost heavy and left me a little off balance and out of sorts. While there was more redness around each injection site, it certainly wasn’t bad and we decided to take advantage of being out of the house and grabbing a few Christmas presents. Funny enough, once home, the “electricity” hit, leaving me begging for Bri to do something……I now wonder if that was a sign, I missed, of what was to come.
I woke up Thursday morning feeling beyond horrendous. I woke up with an awful sore throat, sick to my stomach, exhausted and feeling almost drunk. As the day progressed, my symptoms only progressed with it. I ended up in bed for the entire day. My sore throat worsened, my mouth got incredibly dry. I had difficulty swallowing. I was so nauseous, I was on the brink of throwing up. My entire body ached and felt like it had been hit by a truck. I was super exhausted, too sick to eat, extremely thirsty and by bed time, had a killer headache. After my initial positive experience in September, I was really shocked to be having such an awful reaction to the Botox this time. But this had been my concern all along. I have horrible sensitivities to medication.
For a year, my Neuro had pushed me to try the Botox. I had my first Basilar Migraine in 2010, initially appearing with stroke like symptoms. Since then, we have tried multiple medicines: Opiods, muscle relaxers, Epilepsy meds and Anti-Depressants. All have either been unsuccessful or have had nightmarish adverse reactions. So I knew we were at the end of our proverbial rope with migraine meds left to try. He said that he had great results from Botox and had yet to have any patient experience anything serious; although a few had experienced drooping eyelids. Except when I spoke with other people, I got a different story. I had multiple other people tell me that the Botox didn’t work, with one person saying that a friend had experienced paralysis in one of their arms. He further persuaded me that Botox is incredibly expensive and often times, difficult to get insurance companies to pay for. But I’d been approved. After a particularly bad few months of near constant headaches and migraines and a couple rounds of steroids to break that cycle, I finally relented.
Which is what all led me to here.
Friday morning, I woke up no different, except the difficulty swallowing became even worse. For some reason, that difficulty only compounded my dry mouth and horrendous nauseousness. And this time, I put in a call to the Neurologist. Their recommendation was to call 911. Oh come on!!!
Now normally, I listen to my Doctors. Except this time, I had two reasons to argue with them. 1. The Doctor had told me that if my eyelids drooped, there was nothing they could do, since there’s no anti-toxin to Botox. All I could do was wait for it to wear off 2. It’s Flu season. So really, what could the ER do for me, besides make sure my symptoms didn’t progress?? With that, I got the specifics about the treatment, just in case and had specific instructions that if the symptoms worsened or it became hard to breathe to call an ambulance. I hunkered back into bed and prayed it wouldn’t get any worse. I hate the hospital.
Today is Monday and I think I’m through the worst of it. The scariest symptom, the difficulty swallowing, has finally abated and it seems like I’m gaining a couple hours each day of symptom relief. Which is why I’m seizing the opportunity to write now. My sore throat is gone, as is the dry mouth, body aches and severe exhaustion. The difficulty eating and nauseousness comes and goes throughout the day-so last night we made some Chicken Noodle Soup.
I sometimes feel like I’m forced to play Russian Roulette with my health…… Now through this, if I do, in fact, get some relief from the electricity and headaches/migraines, will going through this again be worth it? I guess I’m not sure. What I/we are sure of, is that I will NOT be doing the injections in March, as it’s WAY too close to my Daughter’s wedding. And, that it may not be a bad idea to see the Allergist to see if we can determine if that was an adverse reaction or if it was an allergic reaction. I think it’s valid to get his opinion on this craziness. Ultimately, it comes down to if it will it work or not and what causes me the most suffering: Migraines and electricity or what I just went through. Why can’t my biggest struggles ever just be what to wear today?
Have you had Botox? Did it work? Did you have any side effects?