Does Botox Work for New Daily Persistent Headache?

Can Botox injections stop the pain of NDPH?

I’ve heard this same question asked consistently over the past seven years. The answer differs, depending on who you ask.

Although I considered it, I never got around to trying it. I kept putting in off and trying other things instead, because I am cautious. At the time I was considering it, insurance wasn’t covering the cost of injections to treat headaches, even though there was some evidence to prove that it is effective.

  • I’ve heard NDPH patients rave about how it works for them.
  • I’ve heard others say the injections didn’t even touch the pain.
  • I’ve heard accounts of temporary paralysis of the eye muscles.
  • I’ve heard people say that the treatment worked for a while, then stopped working.

Is it worth trying? I would say yes, if there is a chance it could stop your pain. Be sure to evaluate all the risks before you make your decision.

Have you already tried botox injections to treat your NDPH?

Please share your experience in the comment section below.


Comments

Does Botox Work for New Daily Persistent Headache? — 24 Comments

  1. For some reason this comment didn’t come up here, so I’m reposting it:

    Julie said – 18 hours ago
    I tried it twice and it didn’t help at all. Personally, I’ve never heard of anyone with NDPH who was helped by it, thought I’ve heard of people with other types of headaches who find it helpful. Botox was approved for headache treatments about a year ago. Since then, insurance approval hasn’t been a challenge for most people I know who have tried it.

  2. I’m from Canada and the gouvernement approved to pay for it for one year of treatment. The Neurologist said that it can take 2 weeks before the pain be relief and the pain can come back at 2 month and half. If it doesn’t work the fist time, we will try another time and if it doesn’t work either so we will stop. If it works, I will have to go for injections all 3 months. I will have 16 injections in one time. On the front, each side and at the back on the neck.

    I don’t have the date for my appointment yet but it will be in May for sure.
    I will keep you posted

    • Good Luck. Ive had the same headache for 3 years. In April I had my first round of Botox, 27 injections. I have some relief, mostly in the morning. I just scheduled my secound round for July. Anything is better that Methodone withdrawl!!!

  3. I am scheduled for my third round of injections in two weeks. My headaches, which came on suddenly and I’ve had for almost seven years now, have been labeled tension/stress headaches and I have them every day. I’m not sure if that is the same as NDPH? Botox for me has lessened the severity enough for me to continue the injections. It’s not perfect and I still take pain meds every day, but it has been a plus for me so far.

  4. Hi

    I’ve got my first round of Botox Wednesday. It was 18 injections. Now I can’t wait to see if I will have relief with it. The Neurologist says that I can maybe see a difference starting mid of next week or the week after. I keep finger cross that Will be helpfull.

    Keep you posted

    Andrée

  5. Hello

    It’s now 2 weeks that I had the Botox injections. I can’t really say it gaves me relief but it makes a really big change for when I travel in car. My pain increased a lot when I was travelling more then an half of hour in car. It was terrible. But now with Botox I can travel for an hour or two and I only have my “regular” pain. But I only travel long ride 3 times since then and it was days with low pain.
    But for the daily pain I don’t notice any change. I have hard days and better one and it’s not really différent then when I started Gapabentin (Neurontin). Hope to see better change in few days but I think it will be only that. I have my appointment for my seconde time and I think I will try it.

    Here is my update!

    • Yes, all comments are public. I only delete spam…but allow everything else – regardless of my personal opinion – to go through.

      • I am uncomfortable with my comments being public and am going to unsubscribe from the group. I wish everyone the best and hope that we’ll all be headache free sometime very soon! Take care.

      • Amy, I don’t want anyone who “Googles” my name to be able to learn about my health issues. While I can see how to unsubscribe from this group, I don’t see how to delete my posts. I’d appreciate it if you would delete them. Thank you.

        • Hi Julie, I can delete your earlier posts for you. I am sorry that you are not comfortable posting here. You are of course free to post under a different name, or anonymously if you are comfortable with that.
          I also received your comment regarding the malware notice you were receiving, but have chosen not to publish it since it contained additional links to the site that is causing problems. I am looking into this issue.

          I created this site as a personal blog. My goal was to share information and find others to connect with and to hopefully encourage people on this difficult journey. It is open to the public, and will remain so for that reason. Additionally, there is no advertising on this site, I don’t make a profit of any kind (it costs me money to run) and all of the maintenance and moderation is handled by me personally.

          I hope only to help people through this site. I hope that in some way, you have been helped on this journey by the information made available.

  6. Thought I’d comment that in the US, since its FDA approved for chronic migraine, insurance has to cover it if your doctor writes chronic migraine. Since chronic migraine is only headaches 15 or more days a month that haven’t responded to at least a few treatments, most doctors are willing to write that for their NDPH patient to try it.

    I gave it a try twice and I’m glad I did, even though it didn’t help and I did have some side effects (but only the second time when it was injected into my shoulder–I don’t recommend that!). The data actually shows it has quite a low side effect risk, and that goes down more when you have someone who is both trained and has many opportunities to practice.

    Ask how often your doctor does this and how long they have been doing it. Someone could be trained but have only treated a few patients or only do it once every few months. I think this is a safer treatment than many of the meds we try. But no, I haven’t heard of anyone with NDPH it helped. Even the stats on it for migraine really vary.

    For some reason I did have a fluke very low pain week right after the first time I got Botox. However, even my neuro didn’t think it was the Botox as it was too immediate and stopped too abruptly. He thought it if was the Botox any relief would have started after closer to a week, and would continue for weeks or months, tapering off. I kinda have some regrets he didn’t let me do three courses three months apart though, as I’ve heard some folks don’t respond until that second or third course. When I came in three months later for the follow up injections, since I still couldn’t move my eyebrows he wouldn’t inject into my face, but proceeded to convince me to try it into my neck & shoulders.

    I think since they had already purchased the Botox on my behalf I was kinda stuck with paying for it, and I figured why not (since I do have neck problems with the headache). I couldn’t move my shoulders without pain for weeks. I guess one of the good things about Botox is that it wears off. Even if you get a rare side effect like a droopy eye (which is an indication the doctor doesn’t know what they are doing and injected too close to the eye), it goes away. Best wishes.

  7. I can now say that Bottox change something for my headache. I have at least 3 days with only a 3 or 4/10 pain level per week and normaly it’s 8 or 9/10. And I also had 4 days none consecutive at 0 pain.

    I will have my second round mid-August. The Neurologiste who makes it his recommended by my

    • Oups sorry!!!

      His recommended by my both Neurologists.
      They said that is one with the most experience with Bottox for headache. His office is at Montréal (Québec).
      I will let you know how everythings going before the next appointement.

      Wish you all good résultes with Bottox for who will try it.

  8. Hi. My husband has had NDPH for exactly 2 years. It has been a horrible journey but I am here to tell you that botox has really helped him. He has never been without the pain but with the botox his level has gone from 3-6/10 to 1-3/10. He feels that is significant relief. He has been getting them for almost a year, he gets them every 12 weeks and he gets 31 injections each time. The problem is that it seems to start wearing off after the first 2 months. And when his pain level increases so does his tinnitus and eye pain as well as dizziness. Does anyone else have these symptoms with their headache? I have not seen mention of them in the various blogs we have looked at.
    Looking forward to your replies,
    Karen

    • Karen,
      My husband has had headaches, dizziness and eye pain for almost 2 years. We know a guy who has had tinnitus for 5+ years. The thing they have in common is a tick borne infection. Neither has been diagnosed with a specific infection but both are starting to be helped by antibiotic and anti-malarial treatments. Please consider having him tested for Lyme and other tick borne infections.

  9. After more than 2 years of trying everything and finally just being referred to a pain specialist I found a Dr who tested me for Lyme Disease. I haven’t had my 2nd appt yet and don’t have the lab results back but he’s already started me on Nystatin for systemic yeast and started me on several homeopathics. And he offers some hope to keep me working and off disability.
    My neurologist diagnosed me with cervical dystonia to get the insurance to pay for the botox before it had been approved for headache. I still pay 150.00 for each treatment. It took 2 1/2 to 3 weeks to start helping and it did reduce it down to 3-4 but it only lasted about 5 weeks and then the pain went right back up until 2 or 3 weeks after the next treatment. I’ve had 2 treatments of botox that were effective and the 3rd one didn’t do anything. Then he tried myobloc, which he described as botox B. It also was helpful for the first 2 tx. Tomorrow will be 3 weeks and so far there hasn’t been any relief since the 3rd tx on 8/30/2012.
    I haven’t seen the pain specialist yet. I’ve been on nortriptyline at 100mg for almost 2 years and I hate the side effects of it. Can’t imagine working feeling even worse. The nortriptyline does keep the pain down to 6-7 so I keep taking it. I’m fortunate that nobody says anything about keeping the lights turned off in my office and wearing my sunglasses.

  10. I am really glad to see that a few people have gotten positive results from botox. For me, however, the injections did not help with my pain.

    Here’s hoping for a cure someday!

    Lydia

  11. I’ll be getting my first Botox round in a couple days. It looks like I can expect no significant results until at least a few days in and possibly a few rounds in?

    • Hi Anne,
      wondering how the botox went for you?
      My son just saw a neuro who will be referring to a pain mgt. doc who does botox. Not sure if that will be prescribed or not, but have been reading the posts here to see how folks have responded.
      Since NDPH can manifest in so many different ways (location, type of pain, etc. ) it would be good to know those details when people post.
      Hope you had some relief!

  12. Thank you for this blog.

    I have had a headache for 4.5 years now. I have been to the Mayo Clinic, UCLA, UCI, etc., and they were unable to help, other than to prescribe Lyrica, muscle relaxers, and Naproxen. Narcotics are out, they only make things worse.

    I was close to having neck surgery, replacing two discs. Luckily I backed out the da before surgery.

    I just spent four weeks in Sedona, having intensive mayo facial therapy which has helped more than anything, but it only reduced my headache by about half. I still live with a 3.5+ on my best days.

    I am scheduled for Botox next week. It sounds like it will not help, but I have tried everything else, even having a top rib removed. If there is a 5% chance this will help, then I will try it.

    Hopefully it helps, and I can return to a normal life. If not I will continue with the pt, and see where it goes from there. Maybe I will eventually have neck surgery.

    I wish everyone with a headache the best of luck, and I pray that a cure can be found. Living in hell is not so fun.

  13. I have just had my 13th Botox injection, which is done every three months. I have it done by the lead Canadian headache specialist neurologist Dr. G. Robinson in Vancouver General Hospital. It does not take away the problem, however it makes my days manageable. I can go for about 2 months with very minimal to no pain. Now, it starts to wear of about the 2.5 month mark, and then takes up to 10 days to kick in. I am finding now that that period of time is decreasing and I am getting a longer relief time as I go on.
    The Dr. is very conscious not to put it to near my brows, so I don’t look like a zombie, and have some brow movement. On average I have 27 needles each treatment. which takes about 5 or 6 minutes.
    At this point I would not give it up.
    I know the headaches are still there, however I don’t have to “feel” them until the Botox starts to wear off, then it is time for another 27 pin pricks

  14. I want to add, that I think it is key to have to Botox treatment done by a neurologist who believes and understands your pain. It my not be perfect the first time, due to finding the correct needle point to address your pain, so don’t give up right away. If you feel less in some spots and not others, share that information and the Dr. should and could move the injection site.

  15. I had my first round of Botox about 4 weeks ago. Still waiting to determine impact. I had 31 injections. Now I cannot move my forehead.

    I will try again in 2 months.

    I will try anything at this point. I am ending my 5th year of the headache.

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