Weird way to get Botox...

seekingadviceJuly 28, 2006

Today I got a bunch of injections of Botox. At least it might be Botox - or it might be saline.

You see, my neurologist enrolled me in a study to assess the effectiveness of Botox as a migraine treatment. To qualify for the study, you have to have lots of headaches, can't have had Botox in the past, and various other requirements which apparently I met. I just finished the preliminary phase (4 weeks) in which I had to phone into a daily diary every evening to report on my headache status for the day. It takes quite a bit of time if you have had a headache because there is a whole slew of questions to answer. If you've not had a headache, it just reminds you to call the next day.

Today was the day I went in to find out whether or not I'd been accepted into the study and I was, so I got my first round of injections. I do this once every 3 months for a total of 5 rounds. The first 2 are part of a double-blind study, meaning 50% of the participants get a placebo and 50% get Botox. They don't tell you, of course, which you're getting, but I'm thinking it must be noticeable if you get the real stuff!

The last 3 rounds are always Botox. I must continue to phone in every day throughout the study. I'm able to take my regular migraine medication during the study, too.

The study is needed to get FDA approval for Botox as a migraine treatment, which means that then you could get insurance to pay for it as such. There is already substantial evidence that it is effective but it is expensive (the cost for what I had today is approximately $1000, according to a magazine article I read) if you have to pay out of pocket. This is still less expensive than my current treatment (Imitrex injections), which have been limited in the past few years by my prescription provider so that I've had to make a few trips to the emergency room.

I don't know whether or not Botox is a treatment I'd use indefinitely, but I am hoping that my participation in the study will help others. The more options available, the better off we are, IMO, since not everyone responds to the same medications.

And just maybe I won't have frown lines for a while :) Oh yes, they do pay you $1275 for the complete study and the treatments are free, of course. The downside is that you get a LOT of injections. I had 34 today in my forehead, temples, neck, and shoulders. I would think that if I got real Botox, I would soon notice a difference, don't you think?

Anyway, my doctor said that they are still accepting study participants so if anyone is interested, I could pass along more info. I believe there are 50 study sites in the U.S. and Canada and they want something like 1500 people to take part.

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My DW has been receiving botox for migraines for a year or more now, fully covered by her insurance company. It's been working really well for her - I hope you get good results as well.

    Bookmark   July 28, 2006 at 11:54PM
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Thanks, chiefneil! I am so glad to hear that it has been working for your wife. From what my doctor told me, it is currently covered by some insurance company but not by most. This study is one of the final "hoops" to get insurance companies to cover it. It should be FDA-approved for migraines in ~18 months, pending results of the study.

How often does your wife get the treatments? Have they prevented most migraines for her?

    Bookmark   July 29, 2006 at 10:09AM
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DW used to have terrible migraines, particularly in the summer. In the summer she'd need almost daily shots of imitrex. Sometimes even taking 2 shots a day. With the botox she's almost completely cured for 2 months. In the third month it starts to wear off but the migraines are controllable with the imitrex pills rather than the shots. Her neurologist says you can't do botox more than every 3 months, so that's the schedule she's on (it might be every 4 months, I'm not completely sure).

It's really been a lifesaver for her, literally. Now she's enjoying life during the summer rather than laying in a dark bedroom the four months of summer. With the cost of the imitrex shots, I'm sure the insurance company is saving a lot of money on the botox treatments vs. her previous imitrex use.

    Bookmark   July 29, 2006 at 11:27AM
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Ouch, 34 injections in one day. You totally had me interested until you said that. DH has had severe headaches for the last year. He takes 3-5 Goody powders for days at a time. I finally convinved him to see a doc and he got a clean bill of health. His doc didn't call them migranes maybe since he doesn't have the other symptoms, just headaches.
Anyway, I probably could have convinced him to try it until I heard about the shots.
BTW, if it was Botox wouldn't you be a paralyzed mass of flesh after 34 injections?

    Bookmark   July 29, 2006 at 11:37AM
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angc, it sounds much worse than it is. I don't know how many shots you get in a regular treatment (outside of the study), but they probably tailor it to the individual. For instance, my migraines are always on the left side so they gave me extra there. The shots I had were across the forehead, in the temples and scalp, back of the neck, neck hairline and shoulder area. However, my headaches are never in the back so I suspect in a regular treatment they would skip all of those. The study must be conducted pretty much the same for all participants so I think you maybe get more than if you were seeking treatment on an individual basis. The study materials say you will get 31-39 shots.

Even with all 34 shots, it still only took 7 minutes. They are very tiny subcutaneous shots and just feel like pin pricks. The doctor just does several one right after the other, so I think they may use the same syringe for several shots? I'm not sure because I had my eyes closed :) Compared to migraines, the shots are a piece of cake!!

    Bookmark   July 29, 2006 at 12:55PM
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I'm also a migraine sufferer, and 90% or so of my headaches are on the left side always, in the same spot. Sometimes during really bad ones I ice that spot, but I always think how wonderful it would be just to numb it...

I'm really interested in this, and have never had botox. what did they say the side effects were? How do you feel today? Are you numb/paralyzed?

I use Imitrex injections as well but they are $72 to fill each prescription (for me, that's two boxes/four shots). Yikes.

And hey - did they stick any in your wrinkles?? :D

Tell me more, I may be interested.

    Bookmark   July 30, 2006 at 4:01AM
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snookums, you sound just like me! My migraines are also nearly always on the left side, often feeling like they're right inside my eye. I often find myself pushing on my eyeball. Imitrex injections have been a godsend, but they're so expensive and I can't afford as much as I need these days.

I am including an ad for the study that I found online. It shows a phone number in New England, but the study is all over the US (I'm in N CA) and I imagine there is a doctor in your area that is participating. The ad gives some info about the study. During the study (and 3 months prior), you may not undergo acupuncture, neck traction, nerve blocks for neck pain, steroid or anesthetic injections into muscles for pain, etc that involve your head and neck. You may use your regular headache medications such as Imitrex, Maxalt, tylenol, etc but not preventatives like Topamax, channel blockers etc. In general, most medications are ok to use, just not ones that are taken to *prevent* migraines.

And yes, they do inject the sites where you have forehead lines. One of the perks!!

I think I may have gotten the real stuff. I didn't feel anything the first day, but yesterday my forehead felt kind of funny but I thought it might be from all the little shots, as I did have a few tiny bruises. Today the top of my forehead feels hard to lift up when I raise my eyebrows, but it's hard to tell since I've been "testing" it for 3 days :) One odd thing, though, is that the back of my neck is sore as though I'd strained the muscles or something. It could be from playing with the kids in the pool but the timing happens to exactly coincide with the shots I got. I can't figure out how tiny shots of Botox or saline would make my neck sore, though, and if it was the real stuff, wouldn't my neck be *less* likely to be sore, regardless of the cause?

Here is a link that might be useful:

    Bookmark   July 30, 2006 at 11:20AM
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snookums, you can do a search on "botox study" +migraine and find a lot more information.

    Bookmark   July 30, 2006 at 11:38AM
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Thank you!

I do take a preventative - a beta blocker (Inderal LA). It makes me nervous to stop taking that, as I find it does make a difference for me.

I'll have to think about this a bit...

    Bookmark   July 30, 2006 at 6:34PM
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My younger sister is almost disabled by migraines. She uses Imitrex injections, at least twice a week on average. It is pure misery.

In the past she has also been on inderal and another drug I can't recall. Her doctors latest "experiment" is Topomax and seemed to be decreasing the amount of headaches she was getting for awhile. He just bumped up the dosage--so we will see.

I see what she goes through and how horrible those headaches are-- so I feel for you Seeking. My family is riddled with migraines and I only tend to get one or two a year luckily.

I will be very interested in how this goes for you and if the Botox works. I will also pass this thread on to my sister.

Thanks for posting.

    Bookmark   July 31, 2006 at 10:26AM
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UPDATE: Thought I'd tell you how things are going two weeks post-shots. I am now positive that I got the real Botox and not the placebo. My forehead resists 'lifting'--when I try to raise my eyebrows, I can barely do so and my forehead stays put. It took several days for this to fully manifest. The back of my neck continues to be kind of sore. To try to explain that: it's hard to hold my head in certain positions, like bending my neck way forward to look at my chest (I guess that gives away the fact that I'm not particularly endowed in that area!). I'm guessing the surface muscles are weak because of all the Botox shot into them, so other muscles may have had to do double duty. It makes it a little uncomfortable to do certain tasks that require a lot of looking down. I don't know whether or not it is something you adjust to as your other muscles get stronger.

On the bright side, I have had almost NO headaches since the Botox shots. I had one 'light' migraine today, but this is the time when I am most prone to serious migraines and all I've had so far is today's small one. Other than that, no headaches!! I know that 2 weeks is a short time span in which to judge, but I'm excited with this news. I have not been headache free this long in years. I feel like I have a whole stockpile of Imitrex because I haven't needed to use it until this morning. I have been testing the waters by purposely indulging my main triggers and nada! I drank beer, tried wine (haven't been able to drink wine without an Imitrex chaser for ages), sat out at the pool in the middle of the day with the flickering sun on water thing going, read outside by the creek--nothing! The one trigger that managed to sneak through with a headache was hormonal, and even that was considerably reduced from the usual. Normally at this time I have days of unrelenting migraines.

So...thought I'd share that news. I'm still cautious about viewing this as a winning deal, but so far I'm delighted.

blsdgal, I hope this information helps your sister. Whether or not someone wishes to be in the study, I think Botox is worth a shot (ha, ha) with a migraine problem that requires constant shots of Imitrex. I'd be willing to pay for it every 3 months if it works out as well as it has begun. Thanks for the post.

    Bookmark   August 10, 2006 at 11:38PM
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It usually takes a full two weeks for the effects of botox to kick in - so your results sound like you got the real stuff.

The botox works the same way that if you put a cast on your arm and it's difficult to move it when they remove the cast - your muscles cannot work and hence weaken.

Sounds like things are swell - and a great way to get something pricey for a free!

For those that are considering botox it makes a TON of difference what doctor you see. So make sure you get someone who does a TON of other patients. It ensures that your botox is fresh and he/she has sufficient experience.

    Bookmark   August 13, 2006 at 10:14PM
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Ah! Thanks for the confirmation, pebbles.

One other downside: the way I first realized my forehead was so frozen was when I began to notice that my eyelids looked funny. I'm not sure exactly why, but my lids now kind of sag down and I have a sort of wing-like wrinkle that angles outward from just above my eye toward the eyebrow. I really dislike this, as I was hoping the Botox would make me look younger, not older!! I was feeling kind of smug (pre-botox) about not having any lid trouble when I was reading the nip-and-tuck post. That's what I get for smugness, I guess.

I really don't like this at all. I have a whole year ahead of me and am afraid my lids will never go back to the way they were.

    Bookmark   August 14, 2006 at 3:20AM
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OK- it's been a month. Fill us in on:

a) frequency of migraines- have the injections helped?
b) your frozen forehead- has it loosened up?

I'm about to beg my neuro for this study. Botox, acupuncture, eye of newt, whatever.


    Bookmark   September 27, 2006 at 8:32PM
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Well...I just told my neuro I want out of the study. He is all but begging me to stay with it, but I dislike the side effects and I have not had any relief from my migraines.

a)the first two weeks were completely pain-free and I was in heaven. But then the migraines returned with a vengeance AND my Imitrex no longer worked very well on them!!! Net result= more medicine than ever needed and headaches never seemed to go away completely.

b)the frozen forehead is now only partially frozen and my Imitrex has begun to work again. This is 9 weeks post Botox.

c)my eyelids look a lot better. I guess the melting polar ice caps in my forehead are responsible. I have to think that if you are one who derives headache relief from the Botox, that might also be waning.

d)my neck, which was soooooo sore for nearly 2 months, is now almost back to normal. It was very hard to read and ride my bike because my neck felt like it needed a brace and it hurt a lot. Neuro said next time he would spread around the injections instead of concentrating them in one area (the ones in my neck).

e)I told the neuro I wanted to move on and try to find something that worked without compromising the one medication I've got in my arsenal that is effective (Imitrex).

What I'd really like to do is not GET migraines. To that end, I have begun a new therapy that is designed to bring my body back into balance and will hopefully give me the bonus of reducing my migraines, which have increased dramatically in the last year. I mean, it doesn't take a brain surgeon (ha ha) to figure out this is likely hormonal, right? I'm 50 and am getting a big increase in migraines? And yet I couldn't get a doctor to do more than prescribe bc pills for me (big no-no with my migraines) or recommend estrogen patches, which I was fairly sure would not be a good treatment for me. I saw two gynos who told me, without any testing, that I needed estrogen, even though I did not fit the symptom profile. The second when said, when I questioned him as to how he knew this, "You're 50!" I finally found a doctor who specializes in women's health (it's all she does) and takes a more naturopathic approach. She ran a bunch of hormone tests for me, including a comprehensive saliva test, and determined that I am very high in estrogen (thank goodness I didn't use the patches!) but extremely low in progesterone. I'm very high in testosterone (ah, THAT'S where the rages are coming from!) and DHEAs (don't know what that is). Low thyroid, too, though it initially appears normal in testing. I have practically no cortisol and my adrenals are wiped out. So, I'm on adrenal rebuilder, a Rx natural progesterone cream that is compounded with pregnenelone (a cortisol precursor or something like that), thyroid stuff and some other supplements that are supposed to help me build back up and feel better. I've only been doing this routine for a week and a half so it's too soon to know how well it will work, but I can tell you that I normally get really bad lower pelvic pain for a week midcycle and I had only a slight twinge this week (doc told me it was the low progesterone at fault).

I guess the (sex) hormone balance is easier to address quickly than the adrenal part. I'm told that will take 1-2 years since mine are really shell-shocked. I'm feeling more energy and drive but am still dealing with bursts of anger and periods of foggy thinking. Don't you just love perimenopause?! Apparently, I'm still a ways from menopause, but I have the adrenal/thyroid/hormone imbalance problems that are often part of the whole perimenopause picture. Here's hoping that my migraines back off with this new treatment, but no indication of that so far. However, the hormone problems I have are known to cause migraines so I have high hopes that achieving a balance will bring them under control.

Here is a good article that explains much of what I've tried to relay.

Here is a link that might be useful: don't assume you are low in estrogen because the dr said so

    Bookmark   September 28, 2006 at 1:25AM
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Wow, this has been an interesting thread. Your neck pain reminded me of that lawsuit a while back. I remember no details, other than it was the wife of some Hollywood producer (or something). She was getting Botox for her migraines, but had a horrible reaction after one series of shots. I seem to remember horrible neck pain.

Anyway, I'm a former migraine sufferer, and it was finally determined to be all hormonal. High estrogen and VERY high testosterone and DHEAs. (The latter helps produce testosterone.) What worked like gangbusters for me is a low-carb diet to even out insulin levels -- and, by proxy, male hormones -- and aldactone to keep the testosterone/DHEAs low. I wonder why you weren't put on an anti-androgen agent like that? I haven't had a migraine in seven years. I feel excellent.

If you have questions, feel free to ask. I'm no longer shy about this stuff. In the meantime, keep us updated!

    Bookmark   October 2, 2006 at 10:12AM
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Agh! I don't remember that lawsuit!! I really did have awful neck pain for a while.

Interesting that your hormone profile is so much like mine! Did you also have low progesterone? How high was your testosterone and DHEAs? According to my saliva test results, my testosterone level is 71 pg/ml, with the optimal level 20-50. My DHEAS is 13.3 ng/ml with the optimal 3-10. My estrogen is 4 pg/ml with the optimal 1.5-3 and progesterone is 80 pg/ml with optimal 100-800. Is this similar to yours?

I don't know why I wasn't put on an anti-androgen agent, but maybe my levels aren't as extreme? I don't have any symptoms like hair loss or facial hair.

My doctor recommended a healthy low-carb diet but she said it sounded like mine was already pretty good. I'm supposed to avoid caffeine, carbs, and sugar. That's a bit tough for me :) She recommended the book, Feeling Fat, Fuzzy, or Frazzled? by Drs. Shames.

I use the progesterone/pregnenolone cream. The pregnenolone is supposed to be a cortisol precursor, I believe. I'm taking lots of adrenal supplement. The doctor told me that she felt my sex hormones would begin to balance themselves with this protocol, so I guess that's why no anti-adrogen. My doctor prefers the most natural approach so perhaps the aldactone is something she might add if it looks like this protocol is not going to do the trick.

As a side note, she told me to drink a daily beverage of 2 oz fresh lemon juice, 2 oz apple cider, and 2 oz apple cider vinegar. Believe me, that's tough to get down sometimes. This is not related to the hormones but to my kidney stones. I'm a chronic stone former and have been for years. When I mentioned this to her, she advised me to drink the above to balance out my body's pH. She told me that I was probably forming stones because my pH was too low, and she told me to buy some pH test strips--the sensitive ones--and check it out. Interestingly, the vinegar and lemon juice, while acidic to begin with, have an alkalizing effect on the body! Well...I didn't hold much hope that this would do anything, but lo and behold, she was right about my pH! It's *exceedingly* low. I've been drinking the acid cocktail (LOL) for about a month and my pH is now normal. I can't tell yet whether or not it will stop my stones, but wouldn't that be incredible???? I've been all the way to one of the top nephrologists in the country and, in spite of all kinds of testing, have consistently been labeled "idiopathic nephrolithiasis" or something like that. It just means stones for we-don't-know-what-the-hell-reason. When I say I form stones, I'm talking way into the hundreds, 7 surgeries (2 during pregnancies), and 3 lithotripsies, not to mention countless pain-wracked (or is it racked?) days trying to cope with renal colic. Wouldn't it be unbelievable if drinking this little thing every day is the solution?? No one has ever checked my pH before.

Thanks SO MUCH for giving me hope that balancing the hormones will get rid of (or at least reduce) the migraines!!!! How long did it take before you noticed a difference?

    Bookmark   October 2, 2006 at 4:37PM
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Wow, drinking 2oz of vinegar a day sounds pretty tough. You might try it via hot and sour soup, or maybe balsamic vinegar over salad (adjusted for the difference in acidity vs. cider). I make a balsamic vinegar reduction sauce that's delicious - if the acidity is preserved during reduction, that might be a another more palatable way to get it down.

    Bookmark   October 2, 2006 at 5:05PM
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Grandma used to mix cider vinegar and local honey and add hot water. It wasn't bad.

    Bookmark   October 2, 2006 at 7:27PM
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Thanks, Neil (Chief?) :) I'm having a lot less trouble now since I bought new cider. Apparently, cider goes bad after a while. I discovered this when I took a big drink of my 'cocktail' and found something like a long snot string in it. When I poured out the cider into the sink, only the top portion was liquid. The rest looked like jello and it was ugly thinking about the fact that I'd been drinking that stuff for a few weeks. Guess I should have figured that cider from last winter was probably suspect, but it didn't occur to me that it would turn to snot. I did think about it going sour or 'hard,' which didn't seem like such a bad thing :)

Anyway, the doc said to use apple cider vinegar only. I also can't use most sweeteners because they have the opposite effect (acidize instead of alkalize), but I found out I can use a small amount of pure maple syrup because it's the only sweetener that does not have an acidifying effect in the body. It's kind of neutral. This has made the cocktail a lot easier to swallow.

pecan, honey would be out, but I do use honey/lemon juice/hot water for sore throats. My parents and grandparents used it, and who knows how far back in the family it goes.

(I'd still love your recipe, Chiefneil!)

    Bookmark   October 6, 2006 at 12:58AM
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Hi Seeking. My DW is a migraine expert, but even she had never heard of a pH imbalance problem. I know she's on the pill for migraine prevention, though, and in combination with botox she's in pretty good shape. Except for that week when you stop the pill, then the headaches always come back.

Balsamic reduction sauce is surprisingly easy to make. I always had it in restaurants with foie gras and finally decided to try it at home. Basically you take your favorite good-quality balsamic and reduce via simmering by about 66%, then add butter to taste. I also like to add a little fruit-infused white balsamic and some brown sugar for a little more depth, but really all you need is the basic aged balsamic. Even the butter is optional. My DD doesn't like the sauce too thick, so after it's reduced I add a little water to thin it back out a bit - sounds odd, but the concentrated sweet flavor will still be there. I serve it with warm-smoked salmon that I do in the grill/smoker for about 4 hours. Delicious and healthy!

    Bookmark   October 6, 2006 at 12:38PM
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WOW!!! That sounds fantastic!! Thanks for the recipe. I think I'll make some sauce this weekend.

I'm sorry; didn't mean to say that the vinegar/cider/lemon juice was for migraines. It's for my kidney stones, as I'm a chronic stone former. My doctor who is treating me for the migraines/hormone problems also recommended this treatment when I told her about my kidney stones, as she says it is my body's pH being too low that is the cause.

    Bookmark   October 6, 2006 at 2:08PM
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