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After 3 rounds of Botox 9 months later

The first set of shots didn't help, second round helped a little, and the third round made them worse and unbearable. I go back to see Neuro on August 22 after I get a new MRI to check clamps in my head from aneurysm removal in 2009. We will be checking to make sure there are no new aneurysms and the clamp still in tact. We have to check this yearly now but since I have had maybe 15 days out of the last 3 months with no migraines, only 15 days without. These migraines this time have kept me in bed and I keep taking Phenergan for throwing up and new nasal spray every 3 hours. It has been very challenging and frustrating that I have had migraines since as early as 5 years old, now I'm almost 48 years old and a major aneurysm removal in 2009 still can't get these migraines in control. As I tell my doctor it's now quantity of life not quality of life I live with daily... and it really sucks.

  1. Thank you for reaching out and sharing your story with us. I'm sorry to hear about the aneurysm. Was the recovery difficult?
    I hear how frustrating it is to have frequent attacks and so few pain free days. This certainly makes life more challenging. Living with multiple health issues can make treating migraine a bit more difficult. Migraine is thought to be a complex neurological disease that falls on a spectrum from mild to severely debilitating. I do wonder if it would be a good idea to seek out help from a doctor who is a true expert in treating migraine and headache disease. General neurologists may be fine doctors but have a hard time being experts in one area because they treat many conditions such as stroke, epilepsy, multiple sclerosis, Parkinson's and more. A true migraine/headache disease doctor treats migraine and headache all day, every day and have additional certification in headache medicine not all general neurologists have. Here is more information on how these doctors are different and how to find one;
    It may be coincidence that the third round of Botox made things worse, especially seeing as the second round helped a bit. I've been getting Botox since 2016 and can tell you from my experience some months are worse than others. While Botox is not a cure, we don't have one yet for migraine disease, it can go a long way for migraine prevention.
    Please let me know what you think and I'm sending you pain free wishes, Nancy Harris Bonk, Patient Leader/Moderator Team

    1. - Thank you so much for sharing. It truly does suck to be navigating such a challenging experience. I'm glad Nancy gave you such good ideas and links to research. I really just wanted to relate to the difficulties involved in navigating nausea and vomiting. I take phenergan regularly and know it comes with strong drowsiness as a primary side effect. It sound like you are doing your best to respond to the pain and symptoms as they arise. Like Nancy, I also have been having botox injections for years (20 years, actually). Some months it is more effective than others but it's never made my condition worse. That is very troubling, indeed. Glad you shared some of your story with us. Hope you'll stay in touch and let us know how things proceed for you. Warmly- Holly team.

      1. I had a very bad experience with Botox. I would urge others to beware and watch closely for cognitive impairment as a side effect.
        LilbitTn, your situation sounds horrible. I can't imagine... and I have had frequent episodic migraines for at least 45 years.
        My personal experience with Botox was that it initially helped after about 6 months (similar to you) but after that, I gradually developed symptoms that were almost identical to the list of symptoms attributed to Alzheimer's Disease. I had ALL of those symptoms that gradually developed between about 6 months and 18 months after beginning Botox therapy. Fortunately, all of those symptoms seem to have gradually reversed commencing about 6 months after treatment discontinuation. My Doc still claims that there is no documentation of any connection between my described symptoms and Botox side effects. I think that his claim is a logical error and an artifact resulting from the investigation and reporting methods used by the pharma industry: #1 Denial #2 Gaslighting #3 Failure to report all side effect complaints, or to investigate them with due diligence #4 Washout of study participants who show certain symptoms which the study sponsors wish to conceal or minimize #6 Failure to provide a mechanism for patient complaints after approval of a newly approved therapy #6 Failure to execute adequate long-term followup for RCTs on the order of at least 6 months to 2 years. I no longer trust "Big Pharma" at all.
        For anyone considering Botox treatment, look at the list of AD symptoms and watch for any cognitive changes in your own situation. Also, to the greatest extent possible, ask several trusted people with whom you are in daily contact and also (this is important) some trusted friends with whom you have only occasional contact, to watch for cognitive or mood changes that might show up in your behavior over time, recognizing that the changes may be very slow onset.

        1. - Thank you for posting this important reminder to all of us to carefully monitor ourselves (and ask our loved ones to do the same) when we are starting ANY new treatment regimen. Many migraine drugs are new and therefore not fully studied as to their long-term impact. It is up to us, as consumers, to carefully research medication that our doctors encourage us to try. Every person is different in the way they respond to treatment - and we have to weigh the risks against the symptoms we are experiencing. We often feel like guinea pigs- so desperate for relief that we're willing to take risks- but those decisions should be made carefully: Good post. Thanks- Holly ( team).

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