February 3, 2011 at 1:58 pm #41651
Well, not much activity here yet, but I wanted to recount my own story and say that if anyone has questions, they can contact me. I had my first Botox treatment two weeks ago and am hopeful at this point.
A typical month for me features 10-15 full blown, incapacitating migraines as well as chronic daily headaches. I woke up every morning with a headache. After my Botox, I’ve had one mild migraine (I was able to function, but it was difficult) and one tension headache. Most days I wake up feeling good.
I’m keeping track of the headaches for my neurologist, who explained that the full benefit of Botox might not be felt until I’ve gone through 3 rounds of treatment. At that point, I’ll have reached a plateau of “maximum benefit” for me and can decide whether it is worth continuing. He also explained that while most people respond well enough to stop all over medications, in some cases people continue with their daily preventatives as an adjunct.
The procedure doesn’t take long – maybe 10 to 15 minutes. It’s uncomfortable, but not unbearable.
Please feel free to ask questions if you have them, as I am quite excited about this new treatment. After 30 years fighting migraines, this may be my best hope.You must be logged in to reply to this topic.
July 11, 2013 at 10:34 pm #43713
I had three rounds. The first two actually went pretty good. For about four weeks I had the migraine symptoms but no pain. The third round however did nothing so Botox ended up not being a treatment option for me. For people who it does work for it has been a miracle treatment.You must be logged in to reply to this topic.
February 3, 2011 at 5:45 pm #41652
Lori, thank you for recounting your experience here. Now that Botox has been approved, I am hoping more patients will have the opportunity to try it, and that it might make a difference for them.
It is worth noting that patients can become immune to the Botox therapy, so it should not be taken lightly. Thankfully, there are two other strains of Botox-like injections that have been developed for use in these patients, but patient reports seem to indicate they are more painful. Botox certainly shouldn’t be considered a first line treatment, but I’m definitely glad it’s at least in the mix! Hoping I’ll have the opportunity someday to try it tooYou must be logged in to reply to this topic.
February 3, 2011 at 6:51 pm #41653
Thanks, Ellen. I understand the caution about using Botox. I was one of only 15 patients out of hundreds that my neurologist felt would benefit from Botox.
My neurologist actually first brought it up a few months ago because he said he felt like I was becoming more resistant to any treatment, and that my many trips to the Emergency Room with static migraines were troubling. I’ve been hospitalized several times in the last several years, and I was taught to inject myself with Toradol at home in order to limit hospital visits.
I’ve also had nerve blocks done in the past, which I think were more painful than the Botox injections. Those worked well for about a month, and my doctor told me at that time that my response to the nerve blocks was a good indication that Botox would work well for me.
If anyone has questions about how it is done or how it felt, I can reassure them. I’m a weenie about pain, and if I can do it, anyone can.You must be logged in to reply to this topic.
February 9, 2011 at 10:10 pm #41654
So far, I’ve had one mild migraine that responded to treatment with Sumatriptan and one mild tension headache in two and a half weeks since the injections. They gave me a short round of prednisone to nip the headache quickly. This is MUCH better than my almost daily headaches that included vomiting, vertigo, etc.
The last several days I’ve not needed any medications and have been feeling pretty good. I’m keeping my fingers crossed!You must be logged in to reply to this topic.
February 11, 2011 at 6:15 am #41655
Lori in PA – this truly is wonderful news. I’m so glad! I’m gonna keep my fingers and toes crossed that this continues… Congratulations!You must be logged in to reply to this topic.
March 11, 2011 at 3:27 am #41656
I am so upset. Last Friday I was supposed to have Botox injections but there was a problem with the drug company supplying the Botox and it’s coverage from my insurance. I go to Jefferson Headache Center located in Jefferson Hospital in Philadelphia, Pennsylvania. There’s no problem with coverage with the doctor or getting the injections, just the Botox. The gal at Jefferson who handles the Botox patients has really been fighting this for me for two weeks and has gotten nowhere. She has rescheduled me again next Friday, meanwhile I’m calling my former employee’s health coverage coordinator (I’m retired) and find out what the problem is. I have a great plan, and pay a high co-pay each month for my coverage. I got injections in November with no problem. I don’t know if coverage has changed from last year, if it’s a different drug provider, my insurance provider’s the same, or maybe because those injections were given by my ENT, but I’m about at my wits end, and so is the gal’s at Jefferson. It is nice to know she is really working hard on this for me. It’s very hard to deal with this and with migraines, if it doesn’t cause a migraine it sure does make one worse!You must be logged in to reply to this topic.
April 6, 2011 at 9:58 pm #41657
How frustrating! Especially considering the FDA has approved Botox for chronic migraine, I would think that shouldn’t be an issue.
I had two rounds of Botox. I only got about a week of relief each time, but those two weeks were wonderful. Even though the injections do hurt, they weren’t anything those of us used to migraine pain can’t deal with!You must be logged in to reply to this topic.
May 13, 2011 at 9:11 pm #41658
I had my first round three months ago, and my insurance will only approve it every six months.. the first round had no effect on me. But I’m going to give it another try in three months.. Did anyone have more success the second time? it IS uncomfortable and painful but compared to a migraine… it’s nothing. I’m so used to IV’s and needles. In one year I visited the ER 80 times I think they said, and was admitted MANY times.. so when I saw the needles they’d be using.. I was like oh, piece of cake.. but I guess I didn’t realize how sensitive the areas they were injecting are.. it’s so much more sensitive than an arm where and IV is inserted… I’m not sure my neuro wants to repeat it because he said since I had zero success it might not ever be successful… Usually I guess, if there’s some success that more rounds help. So, I’m moving to a last resort preventative MAO Inhibitor.. very unhappy about this, but if it helps it helps..You must be logged in to reply to this topic.
May 19, 2011 at 5:51 am #41659
Is there any way you can appeal your insurance’s limitations? I know sometimes this works. Additionally, there is a plan through Allergan in which they can assist you if you can’t afford the procedure. I don’t know enough about Botox and Migraine myself – I’d love to learn more – but I do know that when used for other conditions such as Dystonia, it is necessary to continue the injections regularly in order to achieve maximum benefit. Like anything else, it takes time, and letting it wear off for several months and then starting over just isn’t practical. Does anyone know if this is true for Botox for Migraine?You must be logged in to reply to this topic.
May 29, 2011 at 7:42 am #41660
I guess he doesn’t want to do it now until we see if this new preventative works, because usually you will have SOMEWHAT of a relief if it’s going to work… and I had none. I’d be willing to try it again, but he is hoping we won’t have to!You must be logged in to reply to this topic.
July 6, 2011 at 12:02 am #41661
I am exactly 2 weeks out from my first Botox treatment – have had a terrible two weeks – had to get Toradol and Percocet. But no pain meds for two days!!!!Not headache free but not in bed or on medication!!! I am so hoping this will continue.You must be logged in to reply to this topic.
July 6, 2011 at 12:04 am #41662
Actual treatment was not bad – have had multiple injections for trigger points and a series of lumbar steroid injections for a ruptured disc – the Botox injections were nothing compared to those.You must be logged in to reply to this topic.
July 7, 2011 at 1:14 pm #41663
I had Botox injections 3 weeks ago and I am in severe pain in my neck. I had 31 injections. Some in the forehead, scaple and the rest in my neck. When I woke on the 3rd morning I was unable to move my neck. It became excruciating. I had to call the doctor back and I am now wearing a collar. I was also given steroids to counteract the inflammation. I am very leery of going back for the next 2 sets. I hope this procedure works for everyone else.You must be logged in to reply to this topic.
July 7, 2011 at 3:29 pm #41664
Judi, Botox is used for another condition called Dystonia/torticollis. Unfortunately, sometimes a little too much is used in specific muscles that can render them weak or useless for a few weeks. This can cause trouble swallowing or holding your head up. Feedback on this is important for your doctor so the next time around he/she is more diligent in placement of the injections as well as the amount used. This doesn’t mean that your injections were a failed attempt, it just means that there is a bit more of a learning curve in your particular instance. It’s up to your doctor and you of course, but I don’t know that I would give up hope yet. I hate to see potentially helpful therapies discarded because of a single bad experience that can be learned from…You must be logged in to reply to this topic.
July 7, 2011 at 8:25 pm #41665
Ellen I won’t give up. I just wasn’t expecting so much pain. I still have no relief from the migraine which the doctor told me its not uncommon. Thank you for the support.You must be logged in to reply to this topic.
You must be logged in to reply to this topic.