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The Thief and Grief

I feel self-indulgent talking about this considering yesterday’s reminder of the horrors in the world, but I need to share some of the grief of living with chronic or severe headaches.

I’ve had a nagging feeling for the last month that my version of yoga wasn’t working with my nerve stimulator. The stimulator has a battery box below my collarbone with wires tunneled under the skin over my shoulder, up the neck and to the back of my head. If there is too much stress on the wires, there’s a chance the wires could slip out of place, making the device useless.

With this fear in mind, I worked with an instructor to find poses that we hoped wouldn’t cause problems. In Tuesday night’s class, I could feel the wires pulling and I left worried that this might be the end of yoga. During class today, using even more modified poses, I accepted that class is too risky. I cried so hard, I had to leave. My tears were for losing yoga, but also for the greater losses of this disease.

Headaches steal so much of your life. The list is long, but includes jobs, relationships, having children, self-respect, ambition and identity. Yoga seems minor in comparison, but it is part of my identity. Class is the only time I focus on my body not in pain, but in activity. I don’t feel broken, but am strong and capable. That’s valuable enough that I was willing to risk the only treatment reduces my pain.

After Tuesday night’s class, I was angry and inviting others on some headache forums to share their losses. I won’t name or link to the forums because it would violate the members’ trust, but the responses are heartbreaking.

If you’re comfortable sharing your losses here, please email me at kerrie at thedailyheadache dot com. I’ll post them without identifying you. You might help others accept their losses or explain to their family and friends what this is like. A collective list will make us all feel a little less vulnerable.

6 Responses to The Thief and Grief

  1. tonya says:

    I am 21 years old and have had daily headaches and almost daily migraines since I was 11. I feel like I have run the gamut of migraine treatments except for botox and surgery. Most days seem to end in a depressing realization of how I am whithering (physically, mentally, socially) as the migraines seem to get worse with each passing year. How do you and others with daily migraines have a life and not be so depressed? I am STRUGGLING to get my bachelor’s degree in social work but can no longer work to support myself because of the constant pain. I know I often avoid acquaintances and even relatives because I feel I never have anything good to say. I either feel like total crap or am frustrated about feeling like total crap and I would just rather not fake pleasantries. However I have gotten away from that negative cycle of thinking some because getting out and experiencing life in the migraine-free-world can actually serve as a reminder that to most people, life is not centered around the pain they feel. How do you view the migraine pain in your life? Does it infiltrate every cognitive experience or can you keep it separate from the rest of daily life? How do you all do it? How do you support yourself financially and still seek treatment? How will I ever be able to care for children with the pain?
    This is the first time I have found a site to talk with other people who have constant migraines so please excuse me if my inquiries are too extensive.

  2. I, too, have suffered with migraines since age eleven. I am now 61. Now that I have elatriptan at my disposal, I can stop a headache dead in its tracks. This has given me my life back. I, too, suffered frustration, loss, and work interruptions. I had to close down a fairly lucative business due to an inability to meet my commitment dependably. This was terribly disheartening. I sympathize with those who haven’t found a solution. I would definitely refer migraineure to the “-triptans” for relief.

  3. Cindy Smith says:

    Tonya, I feel like I had wrote what you said after reading it. I am 42 and all mt life I can remember headaches as a child. As I grew up they got worse and more often. I have had every test in ther book, or so the Doctors say I have. Nothing works. I have tried Amerge, Imitrex and other Triptans and they do no work for me. While everyone is different as far as meds are concerened, there is no miracle pill out there for everyone.

    I fell so useless,lazy,depressed,unable to work etc…if you can name it, I feel it. The doctors all say that I have to find a way to just live with it but living with it is very difficult and unbrarable. I hate being on the phone talking to people and it usually just rings and I ignore the calls as much as possible. I fell in my case that there is nothing left but to wait to die and be out of all this pain and suffering once and for all.

  4. cindy says:

    I always thought “headaches were in peoples heads & get up & get over it”!
    I fell at work 17 months ago & “Boy was I wrong in my past thinking”!!!
    Useless,lazy,depressed,fear… all come/go w/headaches. Some worse than others.My life has changed more than I can express.
    I now truly know….

  5. Kid's mom says:

    It breaks my heart to hear you guys suffer for so long. My 13 year old daughter has constant migraine and we are trying everything. It is so sad to see her stop one thing after another and to withdraw from friends. 5 doctors, 3 siblings, 2 parents, a pilates teacher and massage therapist are all trying to help but I feel we take one step forward and 3 back. Anything you can share for us to try we will. please help.

  6. Michelle says:

    I have had chronic migraines for over 20 years. They began after a motorcycle wreck when I was 18. I had abdominal migraines as a child. My mother had the “monthly” migraine and my father had migraines about twice a year that would take him to bed for 3 days. My brother also suffers migraines similar to my father but a little more frequently. I am 43 years old. I went 10 years without being correctly diagnosed with migraines so that was 10 years of OTC abuse, taking meds that were highly addictive: valium, butalbutol; or meds that were useless: beta blockers, super ibuprofen. I was misdiagnosed because I do not have visual aura-no halo, no visual field disturbance. But I have every other symptom. I have migraines over 18 days a month. I do not tell people because when I say I have migraines, I get the “Oh you poor thing!” response, but when I say, “I get migraines daily” I see people’s eyes glaze over. I am tired of explaining how I live with it and I do NOT want to hear about their mother’s cousin who uses palm pressure points to “get rid of” her migraines. Nothing but imitrex gets rid of my headaches. I do not want to live in a world that does not have imitrex. To my comrades in pain, may this day be lived out from behind the 8-ball of pain. My love and prayers to you all.

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