Botox, round 1

I had my first set of Botox injections last Thursday morning. My head was really sore and tender feeling all day Thursday, but it didn't trigger a migraine. In fact, I have not had even a whiff of migraine pain since the injections. 5 days now of no pain.

It's almost like I have to keep pinching myself to make sure it's real.

Bonus: my forehead is surprisingly smooth.

I hope this works for you!!! I have been getting it for a few years now. Yes the forehead is smooth! LOL After having Botox I am able to notice celebrities that I am pretty certain have cosmetic botox! LOL I usually get sore gradually after the injections, throughout the evening, but for me the next day is really uncomfortable, then thats it. After the second day, I don't notice it until next time. A few times the injection has been near a blood vessel and i might have a little blue mark or just a small bruise for a few days, but otherwise nothing. I do still have head pain though, but the botox has made it so much better that I actually have a quality of life now!!! Good news though!!!!

Yes, my head got gradually sore throughout the day after the injections. I got injected at 9am and by 3:30pm I decided to leave work (I went to work right from the dr) because I was sore and exhausted. I was kind of anxious the night before and the morning of, so I wore myself out. Starting the following day, however, I haven't had any pain at all. It is truly unbelievable to me. I definitely believe I will still get migraines and that I am not immune to them now, but at this point - having 5 days in a row without pain - I am tempted to almost consider myself a normal person.

I did notice that my neck is a bit stiff starting a couple of days after the injections. It's not that it hurts, it's just stiff. I think my neck muscles have to learn how to hold up my head now that they're paralyzed.

I'm going to start paying closer attention to celebrities now that you say that! When I lift my eyebrows now I can see a characteristic pattern, like the center of my forehead doesn't lift, but just the middle and outer edges of the brows. I think this is only noticeable to me, but I bet if I started analyzing other people's faces I could figure it out!

Did your Dr inject you with the FDA standard? I mean the injection sites, as the FDA has set a guideline for? That is what I went with in Dec. In mid FEB, I felt it wear out, and my neck and shoulders were so sore. Previous to that I had the occipitals and two spots in the shoulder blades done, but not the mid neck. When I went back in Mar 7, I talked to my DR about the soreness. She said she had just attended a seminar about that. Apparently quite a few botox reicpients had complained about the soreness from the mid neck injections and the recommended that if your patients complain about that to just skip that site and maybe add in somewhere else. That is what we decided to do.

She is using me as a test case for the FDA injection set. We are trying to figure out if their sites and amount works better, worse, or the same, as what we had done previously. This is my second time having it this way, minus the mid-neck, I couldn't give her a conclusive answer in March. I had issues with the weather and other normal messed up life stress, and didn't think it fair to decide one way or another yet. So we are giving it another go around. Normally she gives me 100units in her select spots, and the FDA was 155units, so we will see. Honestly so far I don't notice much improvment with the increase.

You will notice the botox with celebrity men a lot!!!!!! lol

Jwar, so glad it is working for you! It seems several chronic suffered are getting a new lease on life with this Botox thing. One question, how do you find a doctor who is knowledgeable about this? My chronic pain specialist injected me with Botox a while back, but it did nothing. It sounds like he didn't inject the right spots though. He just did a few places in the neck. From what I hear from others it sounds like you all have gotten the injections in very different places.

Hi jwar,

I had them twice before, my neuro just did 2 rounds of nerve blocks on my head, a mixture of steroid and local anasthetic. The first time it worked for 10 days, then they started up again.

Now he wants to do the botox again. This time 200 mg instead of 100 and he is going to stay away from my neck. The last time my neck locked up on me and I couldn't turn my head...

I am also pursueing a pain management dr. He wants to do epidoral on my c1, c2 c3. if that numbs it, then he will do 2 epidorals on the back of my head.

Hope it works!

Glad to hear you are getting results. It is always good to hear something positive!

I am very fortunate to have a neuro that has a lot of experience doing these shots. He's done more than 800 people to date. He is one of the pioneers of the technology from my understanding and participated heavily in getting Botox approved, and now trains other doctors in the technique.

I'm not sure how much of a difference his skills make, but that's his level of expertise. I got injected approximately 40 times. Forehead, temples, sides of head, back of head, neck and shoulders. He then put a spiral of extra injections in my right occipital area around my scar/drill-site from when I had brain surgery. He feels the area is a source of many of my headaches. I got 155 units total.

If anyone lives within a reasonable distance from Chapel Hill, I highly recommend him or any of his staff:

http://www.carolinaheadacheinstitute.com/chi-staff.html

My personal doctor is Alan Finkel, but I have heard great things about all of his staff. I am honestly planning on staying in Chapel Hill until he retires or moves, because no other doctor has been able to help me as much.

40injections in one cycle? The most I had was 12. Hmmm...that could have a major effect on the success I had. I had 5 cycles, 3 I got relief from, 2 I didn't. Then my insurance quit covering it.

No wonder you were sore with that many injection sites.

I think I get around 30 injections. I get the forehead, temples, jaw, occipitals, and a couple of spots in my shoulder blades. I get the 155 units total as well. I go to the Cleveland Clinic, and I honestly believe that finding the right DR, that is trained in Botox and does it often is key to the success of the procedure. I haven't had it doen anywhere else, but in talking with my Dr and discussing my specific pain, she has made adjustments in the past as to sites she injects.

how is the Botox treating you? Have you been feeling ok with it?

I've been getting botox for about two years now. I've had three different doctors do them so far, a neuro, a headache specialist and now my pain specialist does them for me. My pain specialist also does nerve blocks at c2, c3 and c4 as well as the occipitals. I end up with about 40 to sixty injections. The nerve blocks are lidocaine and steroids and I consistantly get 200 units of botox, though for some reason he is obsessed with keeping my crowsfeet at bay so a few units go there each time...with or without my approval...lol

I have a routine now. I take the rest of the day off of work after the injections. It's best if they get me in at the end of the day, so I don't miss a whole day of work.

I get more and more sore as the day goes on, then usually get a migraine. I usually have a migraine for a few days after the injections, and the spots can be tender and my neck gets quite sore. I also sometimes get a very stiff jaw, where chewing REALLY hurts.

The nerve blocks hurt so much, and he does them first, so by the time they are done I barely feel the botox shots because I'm so relieved the nerve blocks are over. My doc is ruthless and he jabs away very quickly until they are done...no breaks except when I switch from my stomach to my back. The ruthless works with me. The headache specialist did them painfully slow and it was worse...but I guess that is just me.

The botox for me is worth every penny and every bit of pain. When it works (which is not every time) it gives me about 75% improvement between weeks three and week eight post shots. It's been working even more consistantly for me now that my pain doc has been doing them.

I'd highly recommend people try them if they are available to them.

Oh...a very important post note:

Buy your botox from a very trusted pharmacy and put a LOT of effort into storing and transporting it at the proper temperature. Botox becomes ineffective very quickly if not stored or trasported at the proper temp. I actually think that is why some of my past cycles have been ineffective, as I was getting my botox from a pharmacy that did not pay nearly enough attention to important details.

You are spending a fortune on the stuff, so you have every right to make sure the pharmacy is following the cold-chain.

Milo,

In Canada you purchurse your own med and bring it to the Dr? Really? I've never had that happen here. The Dr always had it available.

Interesting.

Charlotte, Actually I had to buy it at a pharmacy and take it the doctor the one time I tried it. That was in Atlanta. I suspect it has to do with the quantity of Botox procedures the doctor does. If it is not very many, it's not worth it for them to stock the stuff as it has such a short shelf life. Maybe this should have been a clue.

It's been 24 days since I got the Botox. Here are the results so far, comparing the 24 days before treatment to the 24 days after treatment:

Pre-Botox
no headache: 8 days
mild: 7 days
moderate: 6 days
severe: 3 days

Post-Botox
no headache: 13 days
mild: 5 days
moderate: 4 days
severe: 1 days

So, a 62% increase in migraine-free days. 28% decrease in mild days. 33% decrease in moderate days. 67% decrease in severe days.

The confounding factors are that the 3 weeks prior to botox treatment I was in a good stretch. I hadn't had 8 migraine free days in that span of time in probably a year before that. So usually my "pre" situation would have been much worse. The other confounding factor is that I came down with a horrible case of the flu for 10 days. This was about a week after getting the botox, and is when I had the moderate and severe headaches. A number of people in my lab also came down with the flu and had bad headaches, so I think maybe I wouldn't have been slammed so badly if I had been healthy.

I'll keep you guys posted as time goes on. So far, I am dead impressed.

ooooohhh! so far good to hear! Yes please keep us updated!

Sounds like a very worthwhile level of improvement. How long till you need to get the second round of injections?

My next round of injections are scheduled for June. We made the appt exactly 12 weeks from the last one. My insurance will cover only every 12 weeks, so I am hoping it lasts through then.

I am excited, because I've heard that if you have a good response the first time, that the response tends to improve even more with each set of injections. I really, really, REAAALLLLLY hope this keeps working out.

Jwar.....Your post has really helped me, thanks for keeping everyone informed about your botox treatment and the status of your migraine levels!!! It really makes me excited to get my injections this thursday, April 21.