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Hello everyone

I’ll let you know a little bit about my migraine (? never really got a proper diagnosis) story so you can hopefully help me out with advice or some suggestions 😞

Back in 2014 I felt a horrible pain in my left temporal alongside with some muscle weakness/numbness on my left arm. I immediately went to the ER and got a CT done, all clear. The pain never went away after that. Everyday, unilateral pain always on the temporal area - usually pressure like pain but sometimes stabbing, throbbing - can vary from left to right side but only on one side each time. Other bothersome symptoms that are often present are dizziness and muscle weakness in arm and leg. Also quite frequently pain around the eye, neck and shoulder pain.

I live in Portugal and I saw a ton of doctors, did a bunch of exams - all clear - and tried every medication. Nothing worked. They treated me with Botox in July 2017 and did nothing. I travelled to London and they tried a nerve block injection - also no response. I went back there again in December 2017 and they decided to try Botox again - it worked basically at 100%! So I repeated the treatment every 3 to 6 months there. Very costly and time consuming because I have to take the plane, get a hotel and pay almost 500£ for the treatment.

Problem is: the pandemic hit. Couldn’t travel anymore and the pain was coming back. Desperately looked for places here that did Botox for headaches and tried 3 treatments (at 2 different clinics). The first two helped the tiniest bit, the third did absolutely nothing. The product was the exact same (Botox by Allergan). Can the doctor technique do THIS much of a difference??

Currently I’m right back where I was years ago and it’s so devastating. Physically and mentally. I literally tried this last Botox 3.5 weeks ago and I’m in so much pain. I have an appointment booked in London for October but I’m honestly dreading that one miraculous cure simply stopped working for me.

In the meantime my neurologist here told me to try Aimovig. I got my first shot on Monday (2 days ago) and so far nothing.

If anyone relates to these symptoms and has any advice I’d so grateful if you could share 🤍

  1. @SandraSp23 - Hi there- Thank you so much for sharing some of your journey with us. Sounds like you've been through quite a lot. I did want to address your question about whether or not various doctors and their approaches to botox (dosage/locations of injections) can make "that" much of a difference. In my experience- yes. Absolutely. I've had botox injections for nearly 17 years now for migraine - administered by 5 different doctors over that amount of time. It matters greatly where it is placed and how much is administered. I think there are classic places that botox is injected for migraine, but when your migraine specialist is well-trained and capable of evaluating you specifically, they will tailor-make your treatment plan by giving more injections in various locations- with longer needles- here and there. My current doctor gives injections into my jaw, and the sides of my neck. He does it brilliantly. My previous doctor- I think actually a nurse practitioner, was not so skilled and caused me to have a limp neck- he overdosed the back of my neck so that I literally could not lift my head. So, yes, it does matter who does it. If you found a doctor who was giving you botox in a way that works for you, if there's any way to go back to that person, that might be best- or seek a new person if your current doctor is not helping you. Or, articulate the way that the botox isn't working to your current doctor to see if they can tweak their approach for you.
    As to the Aimovig, that is one of several CGRP treatment options (a new class of migraine treatment). There is also Emgality and Ajovy. Generally it's good to give it a trial run as it can take a bit before it kicks in for some people. However, if Aimovig doesn't work for you, that doesn't mean that one of the other two will not. Check out this article to learn how the CGRPs work differently and why it would be worth trying one of the other two if you decide Aimovig isn't working for you ultimately:
    I personally didn't have much luck with Aimovig, but have had better success with Emgality. We're all quite different in the way we respond and when we have complex migraine, it often takes a combination of migraine treatments to find some relief.
    We are here for you so please let us know how we can support and assist you as you continue along in your journey. Stay in touch. Warmly, Holly ( team).

    1. This may sound crazy but It may have been the affect of the pressurized plane and then being un pressurized by landing.

      The affects of hyperbaric chamber are similar in physiology on the cell. A plane is a massive hyperbaric chamber. Hyperbaric chamber are filled with oxygen and then pressurized usually to 2 atmospheres of pressure or 66 foot dive. The magic of a chamber is when you decompress and come out. The cells actually go through a unique response. The push junk out and take in what they need (simple terms). I believe you are experiencing that result because of the plane ride. To prove my theory, find a chamber in your area and then take the injection. Please consult w the chamber therapist as of your actions, but there is no contraindication.

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