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Understanding the Cynic

“Migraine is treatable.”

That statement is small comfort to many who have lived with migraine for decades with minimal or substandard treatment. It fails to encourage those who have been through years of treatment without success. To many people it feels like too little, too late. All the years of pain and stigma have taken their toll. Bruised, broken, and scarred, some have had their hopes dashed against the sharp rocks of false promises more times than they can remember. All the cries of Have hope!” fall on deaf ears.

All that’s left is a broken shell of cynicism.

Is there any way to reach through the pain, to ignite a spark of hope that might shine a new light on such a dark view of the world? I wish I had an easy answer. The human spirit is resilient, but not invincible. Faced with enough adversity, any of us can run out of physical, mental, emotional, and spiritual resources. Push hard enough for long enough and anyone will break.

Cynicism is a symptom of a broken spirit that has encased itself in a hardened shell in order to protect what remains. It’s hard to feel sympathy for the cynic precisely because they are so negative and mistrusting. Unfortunately, lack of empathy is often what creates the cynic. As hard as it is, compassion is exactly what the cynic needs.

Doctors
Please remember that the hardest-to-love patients are the ones most desperately in need of your compassionate care.

Loved ones
Please remember that the hardness is not a lack of love. It’s protection from the next failed treatment.

Employers
Please remember that the bad attitude isn’t insubordination. It’s frustration at the inability to be the competent, reliable worker you need and deserve.

Fellow migraine friends
Please remember that the resistance to new treatments was forged by the hundreds of disappointments already faced.

Cynics
We love you and will try to understand the intolerable circumstances that created your pain.  Because we haven’t walked your path, we still have hope. We’re happy to share some if you need a little bit to make it through your day.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Donna Marie
    3 years ago

    I totally agree! I just started oxygen therapy for chronic cluster headaches. I had such high hopes and was positive that this was the answer and again it’s not. I’m feeling so alone and despair at go relief of this chronic pain! I try to smile but it’s only a mask.

  • Tammy Rome author
    3 years ago

    Donna,

    I don’t know how much you already know, how long you’ve had symptoms, or when you were diagnosed, so I’m going to cover some of the basics (which you may already know) just to make sure you really have been given a proper education on the use of oxygen for cluster headaches. I spent way too many years thinking it didn’t work because I didn’t know how to use it correctly. I don’t want others to do the same.

    1. Use a non-rebreather mask, not a nasal canula
    2. Use 100% compressed oxygen, not a concentrator
    3. The recommended flow rate is 10-15 lpm
    4. The recommended duration is a minimum of 10 minutes. I’ve found that I can get relief at 10 minutes but it doesn’t last unless I stay on the O2 for at least 20 minutes.
    5. Let the reservoir bag fill with air before you start to breath it in. If you can suck the bag flat, then your flow rate is too low.
    6. If you find yourself sucking it flat even at 15 lpm, then it’s time to see about getting a “demand valve” instead.
    7. I found that I needed to use it EARLY and OFTEN to get ahead of attacks
    8. O2 isn’t a preventive so it won’t stop the attacks from coming.
    9. Like any abortive, O2 doesn’t always work, so it’s important to have a back-up. The 2nd line abortive for cluster headache attacks is Sumatriptan injections — not the pills; they don’t work fast enough.
    10. Other medicines are appropriate to use as preventives IN ADDITION to O2. The most common are Verapamil, Topamax, Depakote, and Lithium. Some patients need more than one to get good relief.
    11. Prednisone is used to break bad cycles while waiting for the preventives to kick in. Since you are chronic, you either don’t have cycles or have too short a break between cycles (less than 30 days). You may still be a candidate for prednisone during particularly rough patches.
    12. Have you heard about Ketamine infusions? They were orginally started at Jefferson Headache Center to treat chornic, intractable cluster headache. They are now being used for chronic, intractable migraine, too. Katie Golden has written several great articles talking about her experience withe ketamine. Check them out!

    NOTE: Source of my information is 17 years of experience, my own doctor’s advice and a Oxygen Use Guide at the Cluster Headache Support Group website

    https://migraine.com/blog/headache-camp/
    https://migraine.com/blog/headache-camp-round-2/
    https://migraine.com/blog/headache-camp-seat/
    https://migraine.com/blog/lessons-headache-camp/
    https://migraine.com/infographic/kudos-to-my-caretakers/
    https://migraine.com/blog/ketamine-for-management/
    https://migraine.com/blog/patient-perspective-ketamine/

    Happy and honored to let you borrow some of my hope for the day. May it spark some hope in you!

  • Donna Marie
    3 years ago

    I would love to chat and I’m very receptive of any suggestions or advice. I’m brand new to the site, so thank you so much for contacting me so quickly.

  • Tammy Rome author
    3 years ago

    Hey, a fellow headbanger! 🙂 We should chat about this. A lot of patients don’t get the right info about how to use O2 for cluster headaches and so they don’t seen good results right away and give up. Plus, it’s only one part of an overall treatment strategy. I won’t push, but if you you’d like to discuss it, I’d be happy to share my experience. Been a chronic clusterhead for 17 years.

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