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What “chronic migraine” looks like for me

I live with chronic migraine. For me, that means I have a low-level migraine 24/7/365.

I know many of us think ‘low-level’ & ‘migraine’ don’t belong in the same sentence, and I get that, really I do. But for me, they can in fact coexist. I am never symptom free — there is always something (usually several somethings) going on. My migraine disorder involves head pain plus a host of other symptoms: nausea; vertigo; light, sound, smell, and motion sensitivity; confusion and memory problems; burning and pressure in my sinuses and behind my eyes; vision loss and visual hallucinations. I spend my days with these various symptoms flitting between a 2 and a 4 in shifting combinations, wondering what’s next.

Then once or twice a day I get what most people think of as a migraine ‘attack’ — throbbing head pain, symptoms spiking to an 8, and all I want is a dark room, an ice pack, and a pain killer that might actually work. If I’m lucky, the triptan works, and I return to my pre-attack, ‘low-level’ state. If I’m not, I move into status migrainosis and end up in the ER a few days down the road, trying to break the beast back down to a manageable 2-3.

I was most of the way through my PhD when this crashed down on me. After trying to finish my dissertation for 2 years, last month I filed for indefinite medical leave from my doctoral program. I cannot work like this. I cannot think like this.

My kids do not remember me healthy. My friends are slowly drifting away — they do not know what to do, and I’m so rarely well enough to get together or follow through on plans that I can’t blame them for finding other people to be with. But I’m lonely.

I’ve had MRI’s and CT’s. I’ve tried every prevention medication out there. I have a Cefaly. I take magnesium and CoQ10 and B2. I get Botox shots every 12 weeks. I’m on my 6th triptan. My veins are wrecked from IV’s in the ER. I am running out of options. I am running out of hope that I will get better. I am starting to accept that this is how my life will be, and I am afraid.

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Comments

  • ccheneve
    4 years ago

    I’ve had the same head ache for more than a year now. I just want to be alone in a quiet room, but I also hate being this lonely. I hope you get better, I honestly do. I don’t think I can offer any advise, but I know how much I appreciate knowing there are other people like me who’s migraine doesn’t stop.

  • Melissa
    4 years ago

    I’m new to this site but have found it so valuable that I visit it almost daily.
    I can connect to the neck aches perfectly. I used to called them pillow headaches but now have accepted that it is a chronic pain that I have found ways to deal with.
    I deal with all of my pain the best I can. The meds I have tried are imitrex and fiocet. Both have serious side effects that prevented me from working. Acupuncture helps break cycles (my record cycle is 34 days) but is not a realistic preventative medicine due to needing to schedule an appointment and cost.
    Excedrin is the most reliable preventative drug and treatment for my migraines…although I’m now needing to take 3 to break a migraine and I’m concerned about what it is doing to my digestive system. Plus I have rebounded on many occasions so that scares me into not taking as many (or none at all). I am an elementary school teacher and have already called out 4 days this year with a migraine, gone home early twice from a migraine and have just taught the best I could (in the dark) probably a dozen times.
    I’m one of those types that absolutely cannot call in or miss work. My husband yells at me all the time about it. 🙁
    I’m sorry for everyone’s pain. One really can’t understand it unless you experience it.
    People at work see me walking with my eyes closed looking like death and say “Another headache?”
    I can’t answer.
    My symptoms have been getting worse over the past 6 years. Looking back I see that many pains and illnesses were actually migraines but I was not knowledgeable of the vastness of this disease.
    I’m beginning to wake up in fear that I’ll have a migraine. How I will cope, what is my class schedule is and will I be able to sleep during my lunch break to make it through, should I plan that trip next month?
    Will I be able to drive home with vision loss?
    My ability to determine the barometric pressure has become a carnival game–I amaze everyone. I know even if the Hg is below 30. Even 29.98.
    Stupid human tricks.
    Thanks to all of you writing and give advice on treatments. I guess it kind of feels good to know that I am not crazy.

  • Tina Donnelly
    4 years ago

    For the last 10 years I have been dealing with Fibromyalgia with migraines, but 3 years ago all of a sudden I started receiving migraines that are explosions (just like you see in the movies) there is no warning, no auras, no prisms in my eyes, or any other signs a migraine is coming. I am so tired of all the meds that I am on, as they really don’t work. Its not bad enough that I deal with pain all over my body, but to have migraines that hit at random and puts me down for hours if not days. I just want a end.

  • Nicci
    4 years ago

    Oh, Marley, thank you for sharing. I don’t know whether to feel better that I’m not alone, or worse that other people are feeling the same way. And I, too, am very frightened. I wish I could clone my neuro doc for everyone. He is considered a “headache specialist” and he in no way minimizes things. He has a chart his patients fill out with a sCale of 0 to 4. 0 being no symptoms and 4 being ER or doc visit. I had put down some .5’s A lot of .5’s. (This was my first 90 days,with him.) On my first day, he said, “Something tells me you have almost no symptom -free days. HOW did he know that?! Does he recognize the patient in denial? Because I guess now I am in denial. Today he told me, “No .5’s — if you have any sx, you put a one!” So, I might be a 23/6/359 sufferer. The weird thing is that MOST of my migraine are now “silent” — no pain. From the first of getting migraine with pain, I started to realize that I had “aura” a lot that never became painful. Blurred vision, a sick stomach. Truthfully, many people here in general seem to suffer MUCH more than me. I never thought the chronic daily level 3-4 neck aches were migraine, because I have a bad back. I’ve lived with chronic pain for years ! And since it’s been spinal pain, I figured this was just more of that. I started taking 800-1000 mg of magnesium, which is more than seems to be Rx for migraines, but I found out from the pharmacy that people take higher dosession than even 1000 for other things. Even 500 reduced my daily neck pain at night from 8 – 9 to like 4. Now during the day it’s 1-3. Today when the doc told me no more .5’s, he said that I have a ‘migraine brain’… it just does migraine all the time, pretty much. Farking fabulous! 😛 He said I can’t woos out on the preventatives, that I have to power through the side effects. I DO feel like a woos because I hear people throwing up, in the ER and with a #4 neck ache I’ll still go running because it’s not my head that hurts. I feel guilty that I can’t concentrate but could go for a run. Or that I could do laundry but not stare at the screen. Or that I could tolerate with great effort, some things. I realize that I am pretty much programmed by society telling me this isn’t real and the fact that predominantly my pain remains in my neck now instead of consuming my whole head — I can ONLY credit that to the magnesium. There’s something muscular to this for me because a few nights of muscle relaxan helps and magnesium is responsible for muscle relaxation, as is botox. All along I have been feeling like Botox would help. How much you want to bet that if I change those .5’s to 1’s we see the daily pattern? Because, Marley, they were 8’s and now 4’s. But my stomach still gets queasy, I still blur out vision-wise, I still get roiling guts & diarreah, noise and sound, sometimes smell sensitivity. But the pain stays in my neck. I wonder if other sufferers notice migraine symptoms without head pain and not just us? With me, they are subtle… my speech will be blithering for an hour or two… then back to normal. I can’t decide if I’d rather have this or episodes of really bad ones that had some sort of recognizable sx! The ‘Almost ALL the time hodge-podge that leaves me not-fully functional makes me feel like the hypochondriac that I and others so wrongly been called. I’m so sorry you deal with this daily, too. I’m scared to death of this getting worse. I’m founder of a national nonprofit and as we become more successful, more air travel will be necessary. Altitude and dry air are major triggers for me and jet lag could be deadly. I have $60K invested in this and you have even more in your PhD… and I’m scared we’ll never realize our dreams or hard work. But I know this… there must be a way. If you haven’t tried it, go for the high dose magnesium oxide… must be oxide or ‘chelated’ otherwise you risk uncontrollable trots. They didn’t name the laxative Milk of MAGNESIA for nuttin’! If you haven’t, try it and let me know. It made a huge reduction in sx for me. I literally told my sister that I was literally “done” if those 9’s didn’t stop. Then I found a reduction. I read about 20 year sufferers who throw up constantly I ask what gives them the will to live? I feel very weak because those brave souls seem to suffer way, way more than me. I wonder if anyone else gets the really dark thoughts at times.

  • Katie M. Golden moderator
    4 years ago

    MarleyM,
    I’m so sorry. I had just started a master’s program, when my Migraines became chronic. There are so many times over the past 3 years that I’ve had no hope. And felt like I’ve tried everything. I wrote about it here: http://migraine.com/blog/ive-tried-everything-2/

    I don’t want to tell you anything you don’t already know, but have you seen a Headache Specialist? These types of neuros are trained in the over 300 headache disorders. You may have to travel to find one near you, but it could be very beneficial to figure out your next steps. If you don’t already know, here’s some info: http://migraine.com/blog/how-are-migraine-specialists-different/

    Also, feel free to visit our forum section to connect with other Migraineurs and ask questions.
    -Katie
    Migraine.com Moderator

  • Luna
    4 years ago

    I wish for you NOT TO FEEL ALONE!! There are many others out here that feel this quiet desperation due to a vicious monster that has invaded our lives. I have a silent migraine 24/7/365. Excuse me for copying phrases but that is the best I can do tonight. And I am feeling alone tonight but I know that I’m really not alone. “Where there is life there is HOPE.”

  • kate
    4 years ago

    MarleyM, God bless you dear heart! I have just posted a story about my son & have run out of time, so I cannot say all that I would like at this point. I will say, that I wish for you NOT TO FEEL ALONE!! There are many others out here that feel this quiet desperation due to a viscious monster that has invaded our lives.
    Please “hang in there” & realize that those who would abandon you in times of trouble, do not deserve the title “friend”. There is hope as long as there is breath… so breathe easier knowing that you are not alone!

  • kuuipoz
    4 years ago

    MarleyM, thank you for your article. I can identify with what you’re saying, I feel one or more symptoms of a migraine basically 24/7 and I’m always exhausted with residual pain over most of my body. I only found this site last night and I’ve cried more times than I can say because there may not be a cure, but I know now that I’m not alone, it isn’t all in my head and I’m not crazy. You are not alone!

  • MarleyM author
    4 years ago

    It’s a crazy-isolating disease, isn’t it? I’m glad you’re finding some comfort in knowing you’re not alone – it helps me, too, to know there are others who understand. I hope someday we all can find real relief.

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