For those who have tried botox

I saw a new neuro on Friday who wants me to try botox...........my body seems to be very sensitive to any meds I try and the side effects have been brutal. He wants to do 24 shots and I am just not sure that I want to go "all in" on the first try. Thinking of calling him on Monday to see if he would be willing to either do less shots or have a smaller does of the botox per shot.........is that a reasonable request???? L

Well funny you would mention that. When I first started getting it I got 100 units, in about 20 injections. Then I went to the 155, with more sites, and we upped the dosage the last time. According to my Insurance info ( i just got a new ins. company and had to copy their guidelines for my DR) anything over 200 units has been proven as equal effective to 200. mind you this is Ins information...

One thing I do not do that some folks do is get the lidocane numbing before the injections. What we have done the past 5-6 times is "same amount, less volume". It is the same amount of Botox, but less of whatever it is mixed with. This has been very helpful for me with the soreness and minute swelling. I sometimes looked like I had mosquito bites on my head, not that I am vain, BUT there isn't much padding on the forehead and it could be a little painful.

The choice is yours, I personally would go with the full treatment. I would be afraid that you might miss a vital spot that could make the difference and want to write it off as not working for you. To me this is not really a "medication" per se. It is pretty localized as to where it is injected, and for me has only ever affected the muscles it was put in. I have had no side effects except for a little pain, and some soreness the next day. You have to go with your best judgement on this, it is your body and you know it best, but I encourage you to try "going all in". So far I haven't really looked back at all. It may seem scary, but once you do it, it won't be. and keep in mind, tons of people and celebrities elect to get botox cosmetically, I doubt they would if the side effects were bad.

Personally as long as you are going to a doctor who is well experienced in this, I think if you are going to have a reaction (very very rare) you would have it with any amount. Getting the Botox injections is quite different from the meds. I too am very med sensitive...seem to get every side effect on the list plus they don't work. I had no problem with the Botox with my experienced doc. Only was in pain for a couple hours. No bruising or swelling (went right back to work). For a week I was tender to the touch at the spots. No numbing solution for me. I have to say it did hurt quite a bit more than I was expecting to get it done, but I've had worse pain. I didn't have a problem getting through the 20 minutes or so. I imagine most people have migraine pain worse (I "just" have 24/7 moderate headache).

I think I got 100 or 150 units? He said he can do more in the future. I got about a week of 50% relief (6 or 8 weeks ago?), so needless to say I was disappointed. Will probably try it again as sometimes try 2 or 3 (with 3 months between) can give better results, then you keep repeating every 3 months. Sid effects are very low--maybe 1%? Very small chance of face drooping, but that is if its done wrong. A good doctor will have had hand on training, do several or more patients a week, and spend a lot of time making sure the injections are in the right spots (even). I can't move my forehead but I don't actually feel the muscle restriction. Nobody has been able to tell unless I told them (only hubby).

That said, if you just aren't comfortable with the idea, don't get talked into it. I believe 20 spots is on the lower side actually. I estimate I got 30 or 40, of which maybe 10 were on the neck. If anything, I'd plan for a couple days "recovery" just in case, but even bruising or swelling would be rare. In actuality, the Botox is way less risk than any of the common preventatives. You just have to get past the idea of the injections and toxin. Best wishes.

I personally think you should go all in. I was a little taken aback the first time that I got treated, as my headaches are ALWAYS in the back right occipital area and he wanted to inject my whole forehead/temples/etc. He really stressed to me that he felt it was important to do the full treatment and that in his experience (with 700+ patients) that the full treatment is necessary for the best effectiveness.

I had some neck weakness after the treatment that was fine for daily life, but made it difficult for me in dance practice to hold my head the proper way, so I asked him at my second treatment to back off from some of the neck injections. That was a bad move on my part because I went from having zero neck pain after the first treatment to having random spasms of neck pain again after getting less Botox. And those have resulted in more headaches. When I go back for my third try in August I am going all in.

I personally did not find the injections painful at all, and chatted pleasantly with my doctor during both treatments. I did feel sore in the injection sites over the course of the day, but I returned to work immediately after each session. Aside from the soreness the day of injections I have not experienced any side effects at all.

I wish you the best of luck. Botox has been the only thing that has afford me some relief and has at times even led me to believe I live a normal person's life. Keep us posted on your progress!

Well............after doing this for 30 years I really need to understand why a doc thinks a treatment will work and was still kind of confused about how botox injected into superficial nerves in my head and neck can impact the aura symptoms that originate in the occipital lobe in my brain. I understand how it can help get rid of migraine pain but not the aura symptoms so I did call the neuro's office today and the receptionist (no nurse in the office) took down my question. She called me back after asking the neuro and just told me that the botox will take care of the aura symptoms - I told her that I wanted to know how the botox works on the aura symptoms - the mechanism involved. She put me on hold and came back and told me that the doctor said that he had spent a lot of time with me on Friday and answered all my questions. I guess that when he told me on Friday that I could call with any questions he really didn't mean it.............

I did push the receptionist with a couple of more questions - I wanted to know if he ever had treated successfully any patients with basilar migraines and she said yes without missing a beat. By this time I was pretty fed up with the conversation and asked her her qualifications and how she would know his success rate and she said she processes all the paperwork and reads the records.............even if I do decide to do botox may look for a different doc.........

I don't know the mechanics of how botox can be used to help an aura. I don't even know if that is possible. But it can be used to help the inflammation and pain.

My two cents: get all the shots you can. Get as many as possible. That way you have the best odds of helping the pain. I got 150ccs in March and I got 200ccs in June. I got about 6weeks of relief from the March shots and about 4 weeks of relief from the June shots. There is just no way for me to predict how my body is going to respond to any treatment. Take all the medicine you are offered.

Botox actually does not stay where it is injected, but migrates to the brain. There were some extensive studies on rodents where they injected Botox near the whiskers, and later sacrificed the animals and and performed biodistribution studies. There were trace amounts of Botox in the neurons in the rats' brains.

Botox acts as a CGRP inhibitor, and CGRP has been proven to be essential in migraine pathogenesis. This is only one of the ways it works - it is believed that it has other mechanisms of action that are not well understood.

Trying one round of Botox is not going to damage you in any way. If anything it just won't work. I understand it's really nerve-wracking getting your hopes up about something new and there is a lot of anxiety with a new drug, but (at least in my opinion) you can never get better without continuing to try.

Also, for what it's worth - and I say this as someone with a doctorate in pharmacology (which is not the same as pharmacy) - the vast majority of doctors and dentists don't seem to really understand the mechanism behind drugs. I've tested lots of docs out by asking them. But just because they don't understand the precise biochemistry behind something doesn't mean that they don't know how to administer it clinically and understand how it is going to affect someone on a physiological whole.

In my experience, most doctors' brains work a bit differently than the scientists that come up with new medications. Not better or worse, just differently. And even if they did spout out a bunch of information about a given mechanism, would you really know whether it was true or not?

Jwar - I so appreciate your responses.......I am certainly okay with a doc who tells me that he/she is uncertain about how a drug works but was given a pretty inaccurate answer by the receptionist about the drug's impact and was really thrown by how I was treated by the receptionist and the comment from the doc that he had already spent a long time with me (think it was 15 minutes). I am currently waiting for insurance pre-cert for the botox which gives me time to calm down before I do the treatment. I know I don't have to like the doc - I can just use him for the botox treatments and go back to my regular neuro for any other issues. I guess I do like to know that they are at least up on current research on the meds they use. My husband is a chemist and sometimes he brings journal articles with him to my doc appointments about meds etc... and most docs do appreciate that level of interaction - pretty sure this particular neuro would not!

I had to smile when you talked about the brains of MDs and PhDs working differently..........our son just finished his PhD in pharmacology and is now finishing his MD - pretty curious to see what kind of doc he turns out to be.....

I hope I didn't come off as snotty or anything with my responses - that was not at all my intention. I get very frustrated with doctors, too. In fact, I don't really super trust or like my current neuro either, but I stay with him based on his reputation. He is very good at injecting Botox and is up to date on what the current treatments are. Sometimes I like to test him out because I am fully 100% up to date on the current literature for migraine (even more so than what I work on in lab, haha) and he usually gets the answers right.

Anyway, Botox was my last resort. I have tried so many things - except for Topamax - and I was in a very dark place. Botox is the only thing that has given me some semblance of a real life again. After my first round of injections I went 10 straight days without a whiff of migraine pain, which in my opinion is pretty close to a miracle.

There are a few MD-PhD joint students in my lab. It's funny to see which ones think like MDs (not so great coming up with their own hypotheses to test, but really good at remembering everything they've ever read) and the ones that think more like scientists.

Yes, please please be 100% comfortable with the doctor doing this. If they don't know what they are doing you can get the rare side effects like the face drooping, weak neck muscles, etc. They should have had hands on training and it should be a mainstay of their practice--at least a few patients a week. They should be able to tell you their "success" rate for your type of condition. You don't want to hear that they "cure" 100% or even 80% of patients. You want to here that they think in your particular case you have a good chance of success, but they won't put a guess on you. I would rather go to a neuro who specializes in this than the one I saw regularly (who splits their time between lots of things). I was lucky enough to see my neuro in a practice with a doctor who does a lot of Botox, so I went to that one.

Great experience and I felt very comfortable with his expertise. I would not encourage the doctor to inject a lot...I would want them to do what they think is best--you can do too much. They typically don't do their max dose on the first time, but close to it. There is a greater risk of side effects if they go up to the max the first time vs. trying say 150 the first and 200 the second like someone mentioned. They should tell you ahead of time how much they plan to use and how many injection sites and in what locations. In short though, done right, Botox is very low risk, much lower than most meds we take. You do want to do your research into your doctor though! Best wishes.

My last injections were done by my Neuro at the end of April and I have only had hormonal migraines and sinus headaches (from the flu). I was suffereing at least twice a week and they are almost gone.

I think he used about 150 in 13 spots. 3 in each temple. 4 along the front hairline. 3 in each side at the base of the skull.
- Only in the scalp, nowhere on my face. This time he put more in my left side than my right, because my migraines are almost always left sided.

It has been almost 12 weeks and I have been really happy with the results so far. I am normally really sensitive when it comes to med side effects, and I never have any side effects from botox.

My physio told me not to get botox in the neck area because there are so many muscle groups. He thought that if you stop using one muscle group, you will over-compensate with other muscle groups - which could cause neck pain. I have no idea whether this is true.

I have found that I have success with getting the injections in my scalp only, so this is where I always get them.

I hope that you find someone that you are comfortable with and that you try can try it. Out of the 15-20 meds I have tried for migraine, I have found this the best - because there are no side effects like nausea or drowsiness.

The neck pain thing is true. I had the injections in Dec. per the FDA reccommmended sites, and there were to spot in the middle of my neck. When the Botox wore off in March-ish a little before that, my neck was so sore. The next round my neuro eliminated that area all together. She said there had been a lot of complaints and that the FDA had sent her paperwork saying if her patients complained of it to just eliminate that spot.

After reading your credentials please give a suggestion on why oh why does Botox work so wonderfully for some and not at all for others?? I had one round and because it had no effect at all the dr. said a second round would do nothing. So, that was the end of that. I realize it's like anything else. Works for some not for others. It makes me wonder perhaps I am having something else and not migraine. (dr. was surprised that it did nothing) Very frustrating situation. I am glad it has helps you!!

My success rate varies every time I get the injections. I find it is not 100% cure every time. Also I found if I had it 3 times in a row (every three months), it tends to become less effective the more I rounds I get. It helps me to have a break from it sometimes.

I think it's effectiveness depends alot on the injection points and how much is injected into each point. I had more success this time I think because I had more injected into my left side (my migraines were left sided). This was something new we hadn't done before - normally he would inject the same amount into every spot.

It also doesn't help my hormonal migraines, so it may depend on the type of migraine.

I have no idea how botox works for my migraines. I guess, it is like every other medication, some people will get relief and then others don't. Migraines are definately frustrating and it can be dissapointing when things we do don't work.

Just a quick update: As I wait (kind of patiently) for my insurance company to decide on the botox I have found a neuro in a neighboring community who does both botox and occipital nerve blocks so made an appointment with him to get a second opinion. If I do decide to do the botox really don't want to have the neuro I saw last week do it and hoping this guy is going to be a little more receptive to my questions. L