Please Talk me off the ledge
Hi…my name is chris and I have been living with this horrible disease for 5 years. It has continued to progress to one nonstop migraine with periods of no pain from many small headaches in these five years. I have tried all level 1 preventives and most of level 2. I am on Botox and it does some dampening, but not 100%. I have been at a constant state of headache for about 18 months (with some times obviously better than others.) I don’t know how much more fight I have in me. The only time (85-90%) o feel like myself anymore (>6 months) is in the pool. I train for swimming about 18 hours a week in the pool. But that’s it. I am always in pain, I have expectations at my job (and will more than likely be fired since I have only been here a few months and am not covered under FMLA.) When im not catching shit from my work, I have to work with my wife and daughter (20months) and as much as she tries to understand and emphasize, she can’t. I feel guilty that I have put this burden on her, but It wasn’t as if I did it on purpose. I would rather be a dead dad than a dad that is seen as weak or a pussy by his own daughter. I am only writing this cause, I hope someone out there is in a similar place and we can both walk each other off the ledge. Can I sure as shit don’t want to be up here, but I have no other options.
Hi Chris,
Thank you for reaching out, not an easy thing to do. I'm sorry it's been so rough for you the last few years. I understand having chronic pain as well; its frustrating, exhausting and isolating.
I do need to say ff you feel you are in danger of hurting yourself or others, please contact your doctor or a crisis hotline. Just in case, I'll provide you with those resources here; https://migraine.com/blog/migraine-crisis-help/ and https://migraine.com/blog/suicide-safety-plans/.
Have you been able to see a true migraine/headache expert? These doctors are different from neurologists in that they are board certified in headache medicine, which again is different than being certified in neurology. Neurologists may be fine doctors, but have a hard time being experts in one area because they treat so many different conditions such as multiple sclerosis, stroke, epilepsy, Parkinson's and others. Migraine/headache experts are just that, experts in one area who treat one condition all day, every day - migraine and headache disorders. Take a look at this information on how these doctors are different and how to find one; http://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/really-find-headache-specialist/.
By any chance are you taking something on a daily basis, or near daily basis to help relieve your pain? Another problem we can unknowingly create is called medication overuse headache, moh which was formerly called rebound. Moh is nasty, makes our attacks harder to treat and can leave us in a daily cycle of pain that too is hard to break. Moh can occur if we take migraine medications and/or pain relievers, whether they are over-the-counter or prescription, more than two to three days a week. Take a look at this link for more information on moh; https://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/.
I find talking with a professional who truly understands, a counselor who specializes in chronic pain, very helpful. I see mine about once a month, and she helps me with the tools I need to keep a good perspective on things. I've learned coping/life skills that help me manage my chronic pain, which I find invaluable. Talking to a professional doesn't mean we're weak, rather we recognize our limitations. This series by contributor Tammy Rome is excellent; https://migraine.com/blog/treating-the-migraine-brain/.
Please let me know you are OK.
NancyNancy,
I am on my 3rd Headache speclisit and waiting on my 4th' appt. I only take DHE and Cambia, so rebounds aren't the issue here. Im waiting to be admitted, but who the hell knows when that will be.
-chrisHi Chris,
Thank you for getting back to me. I'll keep my fingers crossed you'll be admitted soon.
I did want to mention Cambria, taken daily, can unfortunately lead to moh.
Not all migraine experts are the same, and some may claim they are experts, but really aren't. Sometimes we need to go through a few "true" experts before we find one who clicks.
Hang in there.
Nancy
Chris, I'm in another country so obviously we have different working conditions. But my American friends assure me that there are some sympathetic employers out there, even in this difficult and demanding era, who can accommodate some of our needs as long as we let them know what's going on.
Is it possible to have a quiet confidential word with your HR and boss? They may be able to unobtrusively modify your work area so it's kinder to your needs (better lighting, slightly less jangly noise, less smelly/dusty, maybe a 5-min break every hour on bad days) and you can be more productive and effective. After all, they hired you because you're good at what you do! No-one wants you to fail!
Telling my boss turned out to be the best thing: after three nightmare years, it lifted 80% of workplace stress, allowed for easier delegation when needed and occasional early days (so far only 3 this year). We don't talk about it, but the mechanism is there if we need to.
I view it the same way as my staff member's cancer. Private, chronic, and we all work together.
