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Living with Migraine

Please Talk me off the ledge

  • By chris

    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.

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  • By Nancy Harris Bonk Moderator

    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.
    Nancy

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  • By chris

    Nancy,
    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.
    -chris

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  • By Nancy Harris Bonk Moderator

    Hi 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

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  • By Jojiieme

    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.

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  • By msscott

    Hi Chris–not sure what other symptoms you have; mine were constant headaches, bouts of dizziness, and occasional difficulty with reading (it could blur or go double at times). I also had a lot of neck aches over the years. My ENT referred me to a specialist who diagnosed me with vertical heterophoria. Have you looked into it? Headaches are one of the biggest symptoms of it. Might be worth researching–I went for years without any real significant help until the VH diagnosis. Much better these days, so I hope I can inspire someone else to look into it and help themselves. Good luck and stay strong!

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  • By NeuroMom

    Chris, how are you this day? You’ve had some good advice above. There is a possibility that you have more than one type of headache going on as well. Stress can fuel most any type of HA; tension HA, migraine, perpetuates moh HA, etc. I hope you find a HA specialist that works for you, soon. It takes time to sort, unfortunately. There are HA specialty Clinics you can consider, too. There’s one in Chicago, Illinois, “Diamond…”, I think it’s still called, if you’re in the states. Google them. Your primary doctor or Neurologist might consider referring you to a pain specialist, but not necessarily early on. I hope that the pool chemicals aren’t triggering or exacerbating your HA’s due to a chemical sensitivity, nor do I hope the swimming activity/motion itself is cause or contribute; muscle spasms, occipital neuralgias, referred trigger point pain(trapezius muscles or SCM(neck muscles) or etc.
    I hope your HA cycle has broke and that you’re feeling better and down off that ledge. Remember there’s always a better day on its way. Best of luck as you and the HA specialist find an individual treatment plan that works for you. -L

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  • By chris

    I was admitted to Georgetown Hospital on Tuesday and stayed there until 5am this morning. During that time, I was on DHE/Haldol every 8 hours. I had two good days (zero headache). Today, feels like all that hell I went though last week was for nothing. The only saving grace was that I left the hospital for about 5 hours to see my daughter at her first circus, she was soooo happy. The only good moment in my week. I have been refered to Thomas Jefferson Headache center, but that appt is over a month away. I was at a 10 earlier today and had to call a helpline to get some sanity back in my head. I currently hacve two types of headaches, one is DAILY and the other comes and goes. I can deal with the daily, have been for years. Its when they both hit me at the same time. I am being refered to TJH by a headache specialist (not my first one either).

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  • By chris

    So was admitted to hospital and got 2 good days. When I left I was told to use no abortives until I see Dr, which was 4 days. Well she got the flu and moved my appt to 12 days out. I called and asked if I could use something I was 10/10 24hrs a day. She told me that I had to no use anything cause of rebound. When I asked her what am I suppose todo, I got told to tuff it out. I’m doing that but I’m very afarid I’m going to loose my shit and hurt myself. I have called crisis lines and they tell me to take ibprofuern. Wtf….

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  • By Jojiieme

    Hi Chris. Rebounds feel worse than the original episode that started the whole sorry affair. And the spiral that loops from there is so persistent and deep, you sometimes think you’ll never crawl out.
    But here’s the thing: it really is true, if you take something for it, it triggers the reflex of pain.

    A migraine brain learns how to work with pain. It learn how to overcome the blocks of medication and continue working, as normal (which it thinks is with pain). So the more meds you give it, the faster it adapts and goes back to ‘normal’ (pain).

    We have to train our brains to work without meds to stop the pain, and we have to find other ways to stop or shorten/lessen the pain.
    I try a series of deep breathing exercises, and stretching exercises.
    Sometimes, a cool cloth on the back of my neck can help. At other times, making sure my feet and hands are warm while I am lying down will help.
    Sometimes when it’s truly bad I can just get through a short series of 1minute meditations, vipassana style. Just breathe, try to relax tension out of my body and then scan through it toes up. Release all knots and pain. Only spend one minute on this.
    I wish you well.

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  • By Jojiieme

    Nancy, do the moderators have any way to check behind the scenes if someone is doing better if they’ve been silent of a while? I stop past occasionally to see if Chris has written, and hope things have improved.
    I do know it’s his choice.
    🙂

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  • By chris

    I am alive…barely and not for fucking trying. I have attempted twice and somehow failed …FML. I went to Jefferson and did a lidocaine infusion and it has seemed to help. It’s not a 0, but I got to spend all day with my kiddo yesterday and was pain free. Today is a different story, but its tolerable.

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  • By SuzieR

    You failed because you truly want to be there for your daughter. You clearly love her so much, you’re hhanging in there despite the torture you’re suffering. She will only ever have one Daddy. She’ll take whatever moments of love and attention you can give her and cherish them. My parents were abusive shits, and it devestates me that my chronic migraines stop me giving my kids all my time and attention. But they have 100% of my heart, soul, and devotion.

    Keep fighting Chris. One day she’ll be 17, like my daughte and she’ll understand and appreciate the suffering and struggle you’ve gone through to stay by her side. And she’ll be so proud of you. And you’ll be so relieved you didn’t leave her alone in this big scary world.

    Sick and desperate as we are, we cannot abandon our kids. They need our love and protection. We are not useless to them. Our love gives them inner strength they cannot get elsewhere.

    You are her hero. You are alone in the fight of your life. I understand your anguish and torment. If I didn’t have kids I’d jump off a cliff.

    But please, don’t forget – you are her hero. No one else can ever be her Daddy.

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  • By Jojiieme

    Chris, thank you for writing. I wish could write as well as Suzie R.
    And even at 60, I still miss my Daddy, and cry for the days and nights he must have been so depressed and in so much pain but never let us see. (A daddy didn’t, way back then)
    It probably doesn’t mean anything, but your efforts to live pain-free, migraine-free matter, and are noted, even here. Even by someone on the other side of the world.
    Stay strong. Xxxx

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  • By chris

    The pain I can handle. Its the unknown, the depression, the everything has gone to shit in my life that I can’t handle. Yes, I love my daughter and my wife, its me who is the problem. I screw up everything. My migraines just exasperate the problem, cause im either not able to work or im grouchy or i screw something at work up cause i can’t think…must be nice to have self esteem about urself.

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  • By SuzieR

    Oh Chris. I understand. My self esteem is crap too. Always has been. I feel that I’ve messed up everything in my life, missed opportunities, never fulfilled my potential and that I’m a freak. That’s before I got hit with migraines. That was from suffering from bouts of suicidal depression from the age of 14. I’ve been through the wringer, year after year, but with the right anti depressants and therapy I finally got free of it, age 32. Then got migraines age 33! I’m 41 now.I prefer the chronic migraines.

    Cognitive Behavioural Therapy was key in helping me stop being mean to myself – you know, all the nasty things we say in our heads that make us want to slit our wrists and overdose.

    I still feel worthless a lot of the time, but my therapist really woke me up to the facts, Chris. You cannot help being sick. You are doing your best. Your daughter needs YOU. Your wife needs YOU. I bet there are loads of other great things your depression is twisting and hiding from you. That’s what it does. DON’T BELIEVE THR DEPRESSION! IT’S LYING! IT’S MEAN! ITS WRONG! IT’S POISONING YOUR MIND!

    Please see a Cognitive Behavioural Therapist – you’ll get help much more quickly than a regular “tell me about your childhood” shrink. Maybe do that too, to get meds, though.

    Don’t give up hope. xxx

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