My Migraines don’t seem to fit in with others…

Hi I’m new to this forum, well any forum, I have read some of the other posts and replies, and wanted to ask if anyone had the same symptoms of mine… I have had aura type migraines since my earlier 20’s I’m now in my late 50’s, with sometimes facial paralysis and my speech affected. I have been able to manage this over the years, and have taken the off the shelf type migraine tablets, and yes it has affected me, and the attacks came on a regular basis, I managed it by large quantities of water and the odd pill. However, in March this year after having a virus I started to get severe headaches, some of which felt like a javelin being stuck into my head, I also had lack of feeling in the left side of my face. I also had what felt like a fluttering or movement from back to front on the inside of the head, and a pressure which feels like a baseball cap being applied too tightly. These feeling continue all day and are still going over 8 months later.

I eventually went to the Doctor, and was initially diagnosed with Temporal arteritis which was not the case, and after MIR scans proved nothing wrong, was diagnosed with Chronic Migraine, and was given Topiromate, Carbamazapine, and Amitriptyline. I have also had Optical nerve blocks, and more recently botox. None have worked, and I ask myself if this is actually migraine, it is totally different to what I had experienced for many years. I am just about coping with work having had quite a bit of time off, the pain doesn’t stop it does fluctuate, and the pressure feeling moving over the inside of the head makes concentration difficult.

I read that some people stated that Migraine Sufferers were strong ….I agree, I try not to show what I’m feeling especially at work, also because you cant see it like a broken leg, and because I try and act normally you get some skepticism as to whether you have anything wrong with you.

Let me know if anyone experienced the same and what if anything you did to help….I’m getting to the end of what I can endure…and need to know what is going on …. The doctors have been great, but they are trying one thing after another, with no results…


Community Answers
  • Holly Baddour moderator
    3 weeks ago

    Hi Dave- Thanks so much for sharing some of your journey. It sounds like a very long and rough road trying to find answers while enduring quite a lot of discomfort and complex neurological symptoms. I’m so sorry to hear of these struggles.

    I’m curious if you’re working with a migraine specialist? Although they can be harder to find, they are the best trained to help navigate the complex neurological disease that IS migraine. Here’s a link that might help you find a specialist near you: https://migraine.com/blog/the-mrf-directory-of-headache-and-migraine-specialists/

    Although we do not provide medical diagnoses here, all the symptoms you describe do fall under the umbrella of migraine symptoms – aura, pressure, severe pain, facial paralysis, speech challenges. There are so many symptoms related to migraine, but it’s hard to find one person that shares the same combination of them. Here’s a list of some of the many migraine symptoms: https://migraine.com/blog/migraine-is-more-than-a-headache-the-many-symptoms-of-migraine/

    Unfortunately, the journey of trying to find an effective medication (or combination of medications) can be lengthy. Sometimes we find an effective medication and then something shifts in our migraine pattern that stops the efficacy of the treatment and we are left searching again. There have been some recent promising steps forward in migraine treatment- about which many people are hopeful- so it would be worth discussing things like CGRP treatment (https://migraine.com/migraine-treatment/what-are-cgrps/) or Gammacore (https://migraine.com/video/gammacore-approved/) with your migraine specialist.

    Living with an invisible illness does indeed present a unique challenge. It can be difficult to help others understand what we’re up against when they can’t see the way that our heads feel like they are cracked open. Here are some ways to inspire compassion in those with whom you interact: https://migraine.com/living-migraine/raising-awareness-increasing-compassion/

    Lastly, I just wanted to urge you to take care of yourself and to make sure you’re getting the support you need. This is a very challenging journey so it’s important to give yourself some compassion! First, you are not alone. https://migraine.com/living-migraine/you-are-not-alone/ There are millions of people who are navigating the same terrain each day.

    Unfortunately, because it is invisible, we can’t identify one another in the real world! So, it’s important to look for other ways to connect because we can understand each other like nobody else. Seek out online and/or in person support groups- or online communities to connect with others living with migraine or chronic pain (just as you did in this post). Consider connecting with a therapist- not necessarily someone to see every week, just a person you can establish a relationship with so that when/if things can extra tough or you find yourself in need of a tune up, you can make a quick phone call for an appointment rather than having to seek out a new person when you’re feeling low. Think about one or two people in your life who you feel do understand and offer compassion and understanding in a meaningful way. Do a little more to nourish those relationships so that you have at least one person in real life you can call when things get tough. Prioritizing the strengthening of your support network is wonderful self-gift and a really smart thing to do when living with chronic pain.

    Please stay in touch with us here at migraine.com. So glad you’re a part of our community, Dave. We have an active facebook page too, if you’re interested.

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