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Living with Migraine

Debilitating migraines 23 out of 30 days

  • By CatholicCarry

    I’m new to the forums, but sadly not to migraines or health issues.

    My headaches aren’t all the same. However, they do seem to usually involve my eyes and temples. Sometimes I have Alice in Wonderland experiences, but most often I am just nauseated, sensitive to light and sound, have sharp stabbing pain in my head, swollen areas on my face and even into my hands, brain fog, sore/stiff neck/shoulders, throbbing and pulsing pain, and these symptoms last up to 4 days. My head will hurt so much that I can’t even lay it on a pillow and my scalp/hair hurts to touch. I have feelings of uselessness and depression. The sharp pain migrates as the migraine progresses, but doesn’t abate much.

    I’ve gone to pain management, chiropractors, physical therapy, a cardio thoracic surgeon, an internist, a neurologist, a general practitioner, and even supportive care at the cancer hospital, but no one really knows what to do with me. I currently take 50 mg amitriptyline, 100 mg topimirate, and cymbalta daily. I also have Norco 7.5, cyclobenzeprine, imitrex oral and injection that I take as needed.Sometimes the imitrex works. Sometimes the I retried works partially and a Norco finishes the job. Sometimes the Norco works. Sometimes I use the cocktail they gave me in the ER and it helps. Sometimes it doesn’t. Sometimes I lay in bed just moaning because nothing helps. Sometimes I go to the ER and I get a shot of toradol, but it doesn’t always help.

    I’ve been keeping a migraine diary at my current neurologist/DO’s request for a little less than 3 months. I’m not taking more than 10 abortive medications per month. My current DO has migraines herself, but I’m not sure if she is a migraine specialist. All I know is that I can’t continue this way.

    What do you do when you have such misery? How can you live a halfway normal life when most of your days are like I describe?

    My history:
    I’ve had ‘headaches’ since I was a very young child, but wasn’t told I had migraines until I was in high school. Even then I mostly just suffered through and ate NSAIDs like candy. I got through college hoarding imitrex for the really bad days because my insurance would only pay for very little and my fiancé died of melanoma in his brain the summer between our junior and senior year.

    I entered the work force as a forensic biologist and got better insurance and treated my migraines a bit better. I had my first living child And thought the migraines were mostly s thing of the past. Then while pregnant with my second living child I was diagnosed with breast cancer. I was 28. I did chemo while pregnant and delivered a healthy baby girl on her due date without complications. Then I did more chemo before beginning a whole host of surgeries to combat the cancerous beast. I’ve been in surgical menopause for at least we 5 years because my cancer was BRCA1 – breast and ovarian cancer. The cancer is gone, but in its wake I’ve been left with nerve damage – neuropathy and Thoracic Outlet Syndrome and/or Brachial Plexopathy as well as chronic pain and muscle spasms in my chest wall from my bilateral mastectomy/reconstruction. In addition, my migraines came back with a vengeance. At first, I thought it was stress and the TOS/BP combined with 2 children under 5 and a full-time job causing my headaches to debilitate me at least once a week.

    Then, I lost my job and became a stay at home mom with stabilized TOS (theoretically), but the headaches continued to worsen. Last August, I was bucked off my horse and got a concussion along with a dislocated shoulder, bruised coccyx, and other abrasions and bruises. Since then, I’ve been having more bad migraine days a month than migraine-free days.

    God bless him, but my husband is at his wits end with our situation. We are financially insecure since I was the breadwinner of the family. He’s been on disability since before I lost my job due to his chronic back degeneration and severe anxiety. Our children are bright and healthy, but obviously, at ages 8 and 6 need parents that can attend to them and participate in daily life. I have a terrible time just getting through a single day without my head trying to explode.

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  • By SuzieR

    OMG, you’ve really been through the wringer! You must be a strong, strong woman, with alot of courage and determination. And I thought I’d had a tough life. I get 2 or 3 migraines try to hit a week. If my Maxalt Melt doesn’t work, it’s 3-4 days of excruciating pain. Generally, they kind of half work – they cut the migraine pain by half and it’s 1 day in bed. But 3 times a week! And I have to nap every day for 3 hours or I’d get migraines every single day. I feel them try to come, then run for bed with an ice-pack to ward them off. It’s hard. My kids were those ages when mine started. I really feel for you.

    I’ve tried alot of triptans, and this is the best effect I can get. My neuro says I’m doing well, seeing as I started with rapid-onset, untreatable migraines that had me in bed in agony constantly. Do you think you should try a different triptan, maybe revisit ones you tried in the past, that might work better for you now?

    I take 200mg topirimate. 100mg didn’t do it for me. I needed my lighting-fast migraines to be slowed down – the topirimate does that. Now I can actually feel warning signs. Before all I knew was a thunderbolt to my brain and it was too late for a triptan. And it has lowered then number of migraine attacks too. Will your neuro up your dose?

    Have you tried Botox? There’s a thread on the facebook group “Daily Migraine” today where people with chronic migraines are talking about how helpful it’s been. Take a look?

    And there’s a thing called “Daith Piercing” where you get an inner fold of your ear pierced. There is alot of patient testimony to it’s effectiveness. It sounds strange, but so many people say it’s helped enormously.

    From one exhausted, doing-her-best mother to another – you may feel that you are failing your children in ways too numerous to mention, but please, please remember this: as long as you love your kids with all your heart and show them so every day, that is truly all that matters in the end. Love, kindness, patience. Food, a roof, clean clothes. Everything else they will eventually do for themselves – fun days out will happen with their friends when they’re old enough, (like mine now they’re teens), they will earn money themselves for gadgets and fancy clothes one day.

    xxx

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