Ready to try Botox!!!

I will see a new neuro. next month. She was recommended by my primary doctor and is in the same group as he is. I am so sick of not having a life, and am really ready to try botox. She is experienced in it, so I am hoping to get the shots on my first visit with her, however, I doubt I will since she is a new neuro. to me and I will have to go through the same old crap of trying new meds (I will refuse to do that as I have been there and tried that for the past 44 years), and I just want to find out about botox. I wish I could get in tomorrow to see her, but as usual, they are always so booked up and have to wait till the middle of Dec. I would love comments pro and con about your trials with botox, to give me something to think about before the procedure is done. Wish me luck & thank you for your comments!

This is supposed to be a support group for those with migraines. However, every time I post and ask for comments, no one responds to me. I won't be posting anymore here as I feel it is a huge "click" of people within this group that don't extend theirselves to those not in the "click"!! It reminds me of high school with the "clicks" everywhere, and I am too old for this kind of treatment...games, games and more games. Will it ever end, and will someone just be kind to someone who is suffering like the others, and asking for them to reach out a little to me???

i had botox a week ago today.  so far, there's a glimmer of hope, in that i went two whole days in a row without needing a triptan.  for the past many years, i've taken them daily, as i have nothing else that does a thing to help me go through life. like you, i have a 44-year history of this disease.

about 2-3 days ago i posted about botox under the "coconut oil" topic.  this stuff helped me at first, but now doesn't seem to be doing much except messing up my digestive system.  it's all worth trying.  you won't know unless you try.......and you are wise to go to an experienced neuro.  there is no downside, unless the shots are given too close to your eyebrows/eyelids.  it can make them droop.  a small price to pay if it works for you.  dianne

D.Cook....Thank you so much for posting to my post about botox. I have heard along the way, that you are a good, kind and caring person in this discussion group. I look forward to having botox, and hopefully it will give me some relief. I agree that there might be a small price to pay for the shots, as in eyebrows/lids drooping, but it would be worth it if I get any kind of relief from the shots...a day without pain meds. would certainly be nice too! Let me know how you are doing in the days to come. Nita

Hi: I was curious as to how your injections affected your headaches. I am scheduled for botox next month and am anxious to get them. Are you seeing anymore good results since your last post about botox? I didn't see you on this discussion group again after your one post earlier. Let me know how you are when you can. Thank you.

Hi 4everDoll,

I have a little bit to offer you- as far as botox goes- I had it done in November at what is supposed to be a headache clinic. I did have botox for migraines many years ago, as part of a clinical research trial, but I really got mixed results. This time, they assured me that they now know the right dose and spots to get the best success.

So, anyway, I had previously been having a rough year- I am in Peri-menopause and have been getting migraines that last up to 2-3 weeks duration without a break. I have had migraines for about 20 years total though, but the past year has been one of the worst for me- I'm guessing because of the hormone upheavals.

So, shortly afterward I had one migraine that only lasted one day after treating with a triptan (miracle for me) and then I went a month without a migraine!    I was so overjoyed I was almost feeling like a "normal person". Then recently I started going through some SEVERE personal problems - (with my adult children) and BAM! I get another migraine- this one has been going on a week now, and I'm getting discouraged, but I did pretty well up until now- was it due to the botox of just coincidence? I don't know yet.

I was told that some people do not get results from the Botox until the 2nd or 3rd go around- so they told me not to give up hope if it doesn't "work for me" right away.

As far as people not responding to new people's posts- I DO think that forums can be "cliquey" and many people only respond to others that they "know"- I've had this happen on other types of forums, so I know what you mean. Another thing: I know there are several migraine forums out there, but years ago, I heard through the grapevine that this one was for the "worst case migraineurs" - I'm not sure if that's true or not, but theoretically it can mean that if most of the members are in severe migraine pain, they may not be up to reading (or posting) on the forum- this is just a theory, but I figured I'd put it out there.

Take care!
- Jen C.

Thank you so much for letting me know how botox worked for you with your migraines. I would imagine it is pretty much like anything else new that comes out....each individual will get a different take on how it worked,or didn't work, for them. If I could go one day without a headache, I wouldn't know how to act. It has been a long 45 years of nonstop pain. I am thinking positive and hope that the botox will give me some relief. It would be wonderful to not have to take pain meds. as well as lay on an ice pak every day of my life. I will let you know how it goes...just wish I didn't have to wait till Jan. for the injections, but as the saying goes...the best things are worth waiting for! Thanks again Jan for posting. Take care.

nita, i will DEFINITELY go for the botox again. it hasn't made an enormous difference, because everywhere i go and everything i eat contributes to life in the modern world being a minefield for my head. (multiple chemical sensitivity diagnosis).

but there is enough difference that i will get the shots every 2 1/2 months, as long as medicare will pay for it. also, i like the smoother forehead! i think we feel better about ourselves if we look as good as we can, for as long as we can, right?

yes, i believe jen (dandelion) was correct in that the worst cases come to this forum. i've been reading and posting for 16 years now. many of us can't bear to look at a computer screen when in the most pain.

much success to you, dianne

Thank you so much for your encouraging words about botox. If I get any kind of relief, it would be worth it. I am happy to know that you would have it done again. Good luck to you, and wish me luck in January. I will post and let you know how I do with the injections. Nita

Yes, it is true that we are all individual in how we react to certain meds and protocols- migraine is a very individual thing, and I think that is why it seems to be so hard to treat.
What works great for one person, may not help at all for another.

I actually forgot to mention the "smooth forehead" effect-    Yes, that IS certainly a nice perk- especially for those of us who are "older". I just wish they could do me a favor and put a little bit around the eyes too- but of course they don't because that is not part of the program.

I think many of the members of this forum may come here to read for support and encouragement from time to time, but if they are having an active migraine may find it hard to compose their thoughts enough to post. It is sometimes hard just to read from a computer screen.

They say that migraines are a common condition but that means that anyone who gets migraines in any shape or form- such as folks who may get a migraine once or twice a year, can count themselves as a migraineur and may post on migraine forums, but their situation is very different from those of us who may be fighting the "migraine monster" daily.

When I am not having a migraine, I don't even want to *think* about them, and therefore don't usually go online to participate in migraine forums, but I'm thinking maybe it might be a good idea to sometimes come to the forums when I am feeling well, so I can read and post with a clear head.

I feel like I am rambling a bit now  but please do stick around and post about your successes and non successes and January will be here before you know it. When I had my botox appt. It was scheduled for several months ahead but that went really fast, and yours will too!

Good Luck!

- Jen

My brother has gotten tremendous relief from Botox for what it is worth. Since he has been pretty much bed and chair bound for moths now due to pancreatic cancer that is a real God-send. His migraines and occipital nueralgia are extremely sensitive to any kind of pressure or touch. He can't even have a shirt collar or pillow touch his neck. Luckily the doctors were able to get him Botox and its made the procedures he going through far more bearable.

I had my first round of botox in Dec 2012.  It was 31 injections across the top of my forehead, at my temples, in the back of my head and down my neck and shoulders.  The first couple of days afterward, I was very sore at the injection sites.  I also had a very smooth forehead.  About 3 weeks later, portions of my eyebrows became paralyzed.  It was weird.  If I tried to raise my eyebrows, I had this very evil look.  Like just the center of my eyebrows would raise and the inner and outer sides of my eyebrows stayed in the same position.      I really didn't feel like it helped my migraines at all until about 6 weeks after the injections.  At 6 weeks, the intensity of my migraines went down slightly.  Instead of waking up at a 3-4 on the pain scale, I would wake up at a 1-2 level.  By the end of the day, I was at a 4-5 level instead of a 7 or 8.  So I saw about a 30%-ish reduction in pain levels.

However, this did not last.  About 3 months after my first round of injections, my migraines were back just as strong as ever.  I had my second round of Botox in April of 2013 (about 3.5 months after the first round).  I had the same results.  Nothing really changed for the first few weeks.  Then I saw a slight reduction in symptoms for a few weeks, then I was right back to where I started.

My neuro told me that it might take 5-6 rounds of Botox before I would see anything really significant or permanent.  She told me that the drug was "cumulative" and that I would need multiple rounds every 3 months.  I didn't want to wait that long so I opted for surgery instead.

I hope you have better results.  Please let us know what happens.

I want to apologize for my post about no one posting any answers to what I write in this discussion group. I realize that I was having a very bad day, and instead of keeping my thoughts to myself, I put them on paper in this group, and now know it wasn't the right thing to do. I guess I was having a "woe is me day", and I have gotten the nicest comments from this group ... so no more "cranky" postings in this discussion group from me. From the positive comments about getting botox, I am very anxious to get my injections. I pray that I will get some relief, and be able to enjoy headache free days.... whether it will be for a short time or a long time. If anyone wants to write to me at my email address, please feel free to do so....4everdoll@comcast.net..and I would love to hear from you. All of you please take care, and I am here for every one of you if need be.

We all have those days. I'll be honest, I saw both of your posts, but didn't throw out a reply, the first because it was an 'ugh' day and I've never used botox. I didn't reply to the other because I try to stay out of the interweb dramas.