Botox Catastrophe

Dear Fabulous Migraine People,
I had a new Botox protocol, about 50 injections in my neck and shoulders and back and head. What a disaster. I've had a status migraine ever since the injections, more than two months now. Has anyone else had this kind of reaction to Botox? Killer migraines day after day. Neurologist says I just have to wait it out, but I kind of feel like I'm losing my mind. My migraines were already very bad, now they're worse.
Help,
Hazel

Sorry this happened to you. As its been two months, I'd hope it would start to subside soon (as they dose Botox every 3 months). That assumed it is a reaction to the Botox itself. Another more scary possibility is that the injections triggered the status migraine, and it won't subside when the Botox wears off.

I didn't have this, but I do get increased pain for a few days after any injections (Botox, nerve blocks, etc). When I got Botox injections into my neck & shoulder area, I had pain whenever I moved for a few weeks. Turns out that is a known effect with injections in the shoulder area, and its not a recommended spot.

Has your doctor offered any other options besides waiting it out, such as a course of steroids, an infusion (DHE, Lidocaine, etc), etc? Did the doctor inject more than 155 units (suggested per the manufacturer), or inject at sites not recommended? Hope things calm down for you soon! Best wishes.

Thanks, tortoisegirl,
Yes, 155 unit of Botox. And no, my neurologist has not offered anything but "wait and see." He didn't even return my last phone call. Jerk. In the mean time, I'm taking too much Imitrex and pain meds-- back on that hamster wheel.

I'm certainly *hoping* this migraine will go away when the Botox wears off. It better. I can't take too much more of it. Meaningless looms everywhere with a migraine ratcheted up like this, even worse than usual.

The idea of Botox was so promising! It took almost a year to get my insurance to agree to pay for it, and I was so triumphant. It's doubly disappointing to have it backfire like this. I've lost hope for a new treatment that might work, and that loss is depressing.

I'm new to this forum. It helps me to see that I'm not the only person in the world who suffers like this. Love to you, Migraine Girls.

my best,
hazel

Hi, and welcome. I'm very sorry to read your post. I have been getting the Botox for years, along with nerve blocks. I do get a horrific increase for a few days to weeks following the injections. The only time it has lasted longer then that is when I got "frozen" into a kink in my nek which meant I kept triggered until the ten weeks had worn off.

For almost everyone, ten to twelve weeks is the longest it works, so if he/she somehow injected a muscle or group of muscles triggering it, there is the hope it should wear off shortly for you.

Please let us know how it is going.

And again, welcome!

Thank you, Milo. It's good to know I'm not alone.
Hazel

Dear Fabulous Migraine Underworld,

I went to the neurologist today, and he said the Botox couldn't possibly have made my migraines flare like this, three months solid now. He claimed that if my migraines were worse, it was because of medication over-use.

So, basically instead of taking any responsibility (or even having sympathy), he accused me of taking too many pain meds.

I'm so mad.

This is a VERY common response from doctors. It is one of the hardest things to hear, especially if you have heard it over and over again. I'm sorry that is the response you got. I have heard that one way too many times myself. IMHO it is very possible that it was from the botox injections, perhaps not from the actual botox, but from the injection process.

Has it let up at all yet?

I agree with Milo it was likely the injection process than the actual medication. If it started immediately after the injections, how could it be rebound? It really frustrates me when doctors can't at least admit to the possibility of something, instead of just insisting that since something isn't a published reaction or side effect, it isn't possible.

One example is I had two neuros tell me that Topamax couldn't cause hair loss, when there is plenty of folks online who had the same experience as me. Sounds like you need a new neuro. Easier said than done I know. I can't even find one here that is a good fit. However, thankfully I have a good pain specialist. Best wishes.

Yes, I suspect the injections themselves, too. And yes, Tortoise, I'm going to get a new neuro.

Thanks so much for understanding.
Hazel

So if its a "new Botox protocol", that means they really don't know everything about it.
It's quite likely that this process with so many injections in more places than the regular method
might just have some problems.

Any sensible doctor would see this as a real possibility.
When he tries to deny that and comes out with such a defensive answer, that tells me this guy
doesn't know what he's doing. I recommend finding a new doctor.

It's true. Any sensible doctor would see it was a real possibility. Particularly since I was there telling him it was my experience. He's a total jerk and, yes, very defensive. I'll get a new neuro asap.
Thanks, Migrainegirl

How are you doing Hazel?

Hi Milo,
Thanks for checking in. I'm finally over the Botox disaster, but it threw me off kilter, and now I can't get my meds right. I'm currently off everything (except Imitrex), doing a drug purge, which is hard, but sometimes I have to do it to find equilibrium again. It been a very tough year.

I have another bad migraine today. In bed all day, just getting up now, at sunset, like a vampire.

Nice to hear from you, nice to visit the site again. Hope you're well.
Hazel

Hazel
I know your pain in a sense. I had cervical facet injections on both sides and instead of "quieting" down the nerves that trigger migraine they got really pissed off. It took a year for that procedure to "wear off". I wanted to die....horrendous pain everyday , every night for a year.

I am so glad things are doing even a little bit better for you. This summer has been harsh for me with migraine June and July were almost enough to push me over the edge...we all get to that point where we wonder what is God thinking by either allowing this suffering or just allowing us to keep living Someday I know we will have those answers. For right now, hang in there, I know the purge is hard, I have done it too. I got off Xanax and muscle relaxers.

Now just Relpax and Stadol NS and I thank God for those...not sure I could go on without some kind of pain relief.

Try to get some rest and on any well day you have, don't use it on laundry and house work, go outside, go for a walk, plant some flowers, do something that brings you a measure of joy
Blessings,
Trinity

Hi Trinity
It helps to know that there are people out there who suffer this much. I can hardly imagine how you made it through a whole year of intense migraine. A few months of it nearly killed me. And yes, the drug purge is incredibly hard. I got off Ativan, Vicodin, and Fiorinal. Very tough.

Good advice to do good things with days we feel well. I do worry about what a mess the house becomes when I have a headache day after day, but really, in the scheme of things, I know it isn't that important.

My recent sadness is this: We were invited to dinner at the home of some people I like a lot, and I was so excited about it. They're new friends, and I'm so happy to get to know them, they're lovely people, and it's so rare to make new friends like this at our age. I got a bad migraine during the dinner, could hardly focus, had to leave early. That was three days ago. Headache still not gone.

My partner understands, but it's very hard to maintain friendships. I'm always canceling things. I can't be counted upon. It makes me so sad, you can hardly imagine.

Hazel

I'm so very relieved to hear that it has eased. I know all too well how horrible it can go when my doctor injects me in the wrong spot. For me, it is generally because I bucked in pain of twitched while the needle went in. Sometimes it is because a muscle or muscle group is tight when he begins, and it kind of freezes the muscle in that position. I hate the risk of it and just thinking about it happening again causes anxiety for me.

I'm so glad it has eased for you!

Hazel
I do know how that feels. We plan things knowing that the possibility of being derailed is always there. One of my doctors here put me on a prescription anti-inflammatory agent, 500mg twice a day. He is the first to do this. His thinking is that inflammation of the brain makes it easier for the migraine "trigger" to be set off. So I have been taking it for about 5 days so far. Today was day 3 with no migraine....

He knows that will not work "alone" for migraine, but may help prevent. My husband was a Soccer Coach for a High School team, he said that's called "doping" in sports; when you calm down the pain receptors before they get agitated.

So I wondered have you considered doing something like that? The medication is called Relafen 500mg or generic is called Nabumetone 500mg. It must be taken with a meal, or it will be hard on your stomach.

I didn't notice anything for the first 3 days I took it because the "Monster" was cracking open my head, but I kept taking it. Maybe it will help, so I am sticking with it! He gave me a months worth to see what happens. It's not a narcotic so I thought, why not give it a try.

Just some info to pass along to you. Hope you had a better day today!
Trinity

Hi Hazel!
I just found this thread, as earlier I had no access to the Internet.
Just wanted to say I fully sympathize with you, you poor soul. I know first hand how heartbreaking and depressing is to have your hopes
shattered like that-  waiting so long for an approval and then... such disappointment!  

Re- the doctor's reply:

he is an:



Risa

Hi Hazel,

I'm so happy I found your post about your Botox nightmare. I'm going through it now, 2 1/2 months since treatment and daily pain. I'm also so sad it didn't work for me- I was so hopeful! I'm glad you got relief. Have you found anything else that's helped? Not sure what my next option will be.