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Chronic Pain, Fatigue, and Isolation

My migraine story followed a similar path to many other migraineurs until about 6 months ago, when it all took a horrible turn into debilitating chronic daily migraines.


I do not know exactly when my migraines started. I figured out, with no help from the doctors I was seeing, that I had migraines about 4 years ago. I had dealt for years with chronic sinusitis, which I assumed was the cause of headaches and stomach aches that I was getting. It is hard to say if those actually were migraines or symptoms of sinusitis, but they could be debilitating at times. I remember at one point in college I was sick for nearly two months, mostly with stomach issues and tiredness. I don’t remember if there were headaches too. I missed a lot of class that semester.

I still managed a 3.5 GPA that semester, but I felt like some of my professors were not happy with me. The doctors thought I had mono, even though I tested negative for it. It is possible that I was already experiencing the migraine condition that I would finally identify years later. From what I have read, a lot of other migraineurs have had migraine-like symptoms that went unidentified for years before they realized they had migraines.

At around age 22, I started having chronic stomach problems again. I was frequently nauseous. I had headaches on one side of the head as well. Doctors thought as I did that the headaches were caused by my sinusitis and that the stomach problems were acid reflux or an ulcer. However, treatments for digestive problems did not prove effective. I kept dealing with symptoms for months.

Almost a year later, the headaches became much more profound, and I knew there was something much deeper going on. My sinusitis was largely under control, but the headaches and stomach problems remained and were getting worse. One night, I had the worst headache I have ever had in my life. It was on the right side of my head. I would say that it was a 9 out of 10 on the pain scale. If it had been any more painful, I probably would have been unconscious. The pain was accompanied by nausea, which became worse every time the pain throbbed. I tried some Vicodin. It did nothing. I finally checked myself into the emergency room at about 2:00 AM. After a long wait, the doctors prescribed oxycodone for my pain, but I had to go pick it up from the pharmacy because I had driven myself to the hospital. The only 24-hour pharmacy was on the opposite side of town. I drove myself to the pharmacy, where I threw up in their parking lot two times, once by the car and once by the front door. I informed a store employee, who of course was disgusted. I am not sure that the painkiller actually helped with the pain, but it knocked me out for about 12 hours.

For the next few months, taking a heavy painkiller that put me to sleep for 12 hours was my primary way of treating the headaches, which would usually occur once every few weeks. When someone finally suggested to me that I look into migraines, I did a lot of reading, and it was obvious that it was what I had. Needless to say, I was pretty upset that the doctors had never discussed this as a possible diagnosis for my stomach and head aches.

For the next few years, I tracked my migraines carefully and tried to remove as many migraine triggers as possible. Removing common triggers did not prove to be very effective. The only thing that really helped me was understanding that the best thing to do with a migraine was lay down in a dark quiet place as quickly as possible. Through trial and error, I figured out that the only triggers I could confirm were weather changes, alcohol (especially beer), and light and sound. I frequently used sunglasses and earplugs at work and kept drinking to a minimum, which eased my frequency of migraines slightly. I would miss about a week’s worth of work each year due to severe migraines. I usually just worked through the pain, which would pass after 1-5 days.

In the fall of 2013, I was going through a lot of stress, mostly related to my job. In October, I suddenly started feeling extremely tired all the time. All I wanted to do was sleep all the time. As I was starting to research possible causes of this, I was hit with a really bad migraine. Painkillers were doing nothing for it. Sleeping it off didn’t work. It went on for several days when I decided to finally go into the doctor. They gave me more drugs for symptoms and sent me on my way. Two weeks later, I was still experiencing migraine symptoms every single day. I returned to the doctor, and they finally set me up with some scans and referred me to a neurologist.

Since the beginning of November, I have had migraine symptoms most of the day for nearly every day. I occasionally have a week or two of relief where I won’t have any symptoms or the symptoms will be milder and for shorter portions of the day. However, most days I feel sick, and most days I struggle to work through it. For example, today I am on day 15 of a streak of consecutive days with migraine symptoms for at least 4 hours out of the day. I have done a lot of research on migraines, to the point where I can often predict what my neurologist will say at the next appointment and what he will prescribe. He agrees that I very likely have chronic daily migraines (a.k.a. “transformed migraine,” migraine symptoms for a significant portion of the day more than 15 days out of the month). I have now been dealing with chronic migraine for over 6 months.

Chronic migraines are debilitating. I feel weak almost constantly. I am often nauseous, dizzy, tired, irritable, and in pain. I have only taken 4 sick days in the last 7 months, which I think any person familiar with this condition would find impressive. However, I cannot say that the condition hasn’t affected my work. I have been late many mornings. I have canceled meetings and all kinds of evening activities. I have very little focus. I am irritable with other people at work and not very effective at my job. I am terrified that I am going to get poor evaluations this year. I used to come home every day and spend hours in my home office composing music. I was in a phase of a couple years where I was constantly feeling extremely creative and getting so much work done. Sometimes ideas were coming into my head faster than I could write them down. That’s a good problem to have! That creativity stopped instantly at the onset of my chronic migraines. I have completed no new compositions since then. I have barely written anything. I feel like the flow of creative ideas into my head has completely shut off. There is no question that migraines are having a serious impact on my work and my creativity, not to mention my housekeeping and my marriage.

I recently read the book “A Brain Wider Than the Sky” by Andrew Levy. Dr. Levy is a professor and writer who has personally dealt with chronic migraines, and the book is sort of a memoir of his experience and summary of the research he did on migraines. The book is very interesting, and I found some relief in reading the experiences of someone else who has dealt with this same condition. Dr. Levy tried really hard in the book to show a positive reason for humans to experience this condition. There must be a reason, right? Levy suggests that some people have found inspiration for their creativity from their migraines. Many artists use their pain as a source for inspiration. The characters in Chuck Palahniak’s novel “Diary” poison the main character Misty Wilmot so that she can put together an art show that will save their island. I am sure that I could find some creative inspiration out of this experience if the headaches ever took a break long enough for me to focus! Levy’s other suggestion is that migraines are the body’s way of telling you that you need to chill out: too much light, sound, and stress, too much of a particular food or drink, or perhaps just a warning that nasty weather is on the horizon and you need to take cover. He may be on to something there. Lately, my migraines have been at their worst in stressful situations. Studies that I have read about chronic migraines have shown a regular schedule of sleep, eating, and exercise to be more effective than any treatment or other factor.

I have read that chronic migraines usually pass after an unpredictable amount of time––perhaps months or years, depending on the person–– and most people progress back to episodic migraines. I certainly hope that this is the case for me and that it happens very soon. This is the most difficult thing I have ever experienced in my life. My work is very important to me. Teaching, writing and playing music, and spending quality time with my family and friends are all very important to me, and having chronic pain and weakness takes those things away from me or at least sucks the joy out of them. The worst thing about this condition, worse than the pain or any of the symptoms is the isolation. So much time spent alone, laying in a dark room. Whole weekends in bed, hiding from lights, sounds, and human beings. Family members, friends, and co-workers who I am letting down. Everyone expects more from me than I can give them right now, and I feel like almost nobody understands how incapable I am of giving them my attention, no matter how hard I try. The isolation is depressing. I feel like the emotional pain is just as bad as the physical pain. They are both more than I think I will be able to tolerate if something does not change soon.

From what I have read, I have the feeling that the next step in my treatment is going to be to try an anti-epilepsy drug or an anti-depressant. These have shown to be effective for some migraine sufferers. However, many people have found, whether the drugs treat their migraines or not, that the symptoms are horrible. Dr. Levy wrote in his book that an anti-epilepsy drug stopped his migraines, but he stopped taking it because it made him behave erratically. He would rather have the horrible chronic pain than not be certain that he was in control of his own behavior. I suppose that side effects are a risk you take with any drug treatment. I have taken drugs that have given me insomnia, fatigue, anxiety, and all kinds of other side effects. Those things have scared me. I suppose that my biggest fear right now is that my pain will either last forever or will only be relieved by a drug that does something else horrible to me. I also fear how this is already affecting my career and my marriage. How much more stress can those relationships take before they are broken?

I feel a bit relieved to finally put my fears into writing. I look forward to communicating with others on this site who have shared similar experiences. I would love to find out how others have found relief for the pain, isolation, and lost production that they have suffered from their migraines.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Marybeth Cramer
    5 years ago

    Doug,
    My 15 year old daughter has chronic daily headaches and migraine. We have been on a 3 year quest to find the right treatment for her. Her charting triggers and what meds and diet changes do and don’t work are more science research than she ever does in science class. Please just keep trying one change at a time and give each change at least a month.
    Please look into “Candida Overgrowth” and also try a gluten free diet. With your stomach issues I can’t help but think they may be related in some way. I have talked to people who are on a gluten free diet and it has eliminated or greatly reduced the number and severity of their migraines. The candida overgrowth is different and can cause so many issues not just digestive. Also get your blood tested, some people I know were low in some vitamin areas and being on specific supplements helped them.
    My daughter has been on many of the medications out there. For 9 months Topiramate worked great then it stopped working. Currently she is on a combination of low dose anti-depressants and she is getting some near pain free days. When she is suffering from a migraine we have found that her drinking a 50/50 mix of water and Gatorade throughout the day helps, as well as taking a multi-vitamin. Like snowflakes no two people’s treatments seem to be the same.
    Things I have learned in this process:
    1. Migraine can be a symptom of many other disease/disorders as well as be its own disease.
    2. You have to systematically eliminate each disease/disorder that it could be a symptom of before you know if you are left with it as its own disease.
    3. Things you never thought could be causing it could be the problem.
    4. You have to find a headache specialist (ours is a neurologist) who will work with you and not just push drugs.
    I hope you can find something that helps. Don’t give up, just keep trying.

  • art lover
    5 years ago

    Doug-Your headaches almost sound more like cluster headaches, which are more prevalent in men but I’m no “expert”, haha, only an expert in my own experience with migraines! As someone who’s had them her whole life, I’m convinced we sufferers need to try more with our diets and keep trying with medications because the right one can really help. There are good anti-nausea meds that have helped me a great deal too. I know there is an oxygen treatment for cluster headaches too.

  • Katie M. Golden moderator
    5 years ago

    Doug,
    We have a Forum area where you can read a lot of people’s comments and questions about Botox. It’s under the Community tab.

    I’ve personally been doing Botox for 3 years now and find that it is probably the most helpful tool I have. It has a life cycle of its own. After the injections, it may take a week to feel any effects. And then it will start to wear off before my next injections. Over the years, I’ve noticed that it doesn’t last as long as it used to. My injections are scheduled 12 weeks apart. I used to get 10 good weeks, but now it’s more like 6 weeks. It doesn’t happen for everyone, but even having less pain for 6 weeks is worth it.

    Do some research, check out the forum and decide if it’s right for you.
    -Katie

  • Doug author
    5 years ago

    Thank you, Katie, Anne, and Beth.

    The comments I have read on this thread and throughout this site have been fantastic and so helpful to me. I have found some great advice about treatment options as well as dealing with the social and emotional impacts of living with chronic migraines.

    I am looking forward to continuing to keep up with this site for news and information as well as talking to other people about their experiences. I am very curious about how people are responding to Botox treatments. Most people are still new to it, so I have only heard early reactions from patients who seem to feel positive about it so far.

  • BethBlue
    5 years ago

    Doug,
    Your story is both heartbreaking and uplifting. It pains me to read about the darkness that has surrounded you because of the insidiousness of chronic migraine. I understand it: I’m in that place as well. However, I can tell you with hope in my heart that it gets better. It really DOES get better! For what it’s worth, here’s some advice. First, I have been undergoing Botox injection therapy for almost two years, and it has been largely successful for me. I have injections every three months. Please investigate this therapy, because it makes a huge difference in a migraineur’s life if it’s successful. The second recommendation is something that you’re already doing: Stay in touch with the “outside” world, such as this website and others like it. Do your research and stay informed. It helps so much to feel as though you’re one step ahead of everyone else (even if you’re not). And finally, TRY to stay hopeful. It’s so difficult, I know. I haven’t been able to work since 2008, and it has been overwhelming for my family. Still, with hope and patience, I think I might be able to look for work this summer. My fingers are crossed! I’m a lawyer/teacher, and opportunities have pretty much disappeared for someone like me, but I have to remain hopeful. If all else fails, maybe I can take up the cause of fighting for the disability rights of migraineurs, right? 😉 Stay in touch with us, and let us know how you’re doing. We’re rooting for you.

  • Anne
    5 years ago

    The preventive drugs side effects are not that awful – a lot less awful than the headaches. As a chronic migraineur, I’ve tried everything. I’ve also eliminated a lot that doesn’t work by trying it. You’ll know very soon if you have a reaction/something is not effective. I’m now on Botox for migraine – fingers crossed that it works. Pain medication does not help my migraines – try Relpax or other medication specifically for migraines. Don’t give up! I’ve found that I have to continually advocate for myself in order to get my needs met. Medical science does not know the cause of migraines, so we have to do a lot of our own research.

    I am REALLY sorry about your pain – and the other awful stuff that goes with it – fatigue, confusion, nausea, etc. It sucks!!! I have a plastic bag in my car for when I puke – I know, charming…

    Things that have helped me – a food elimination diet – no gluten, dairy, artificial sweeteners, etc. Water with electrolytes – this has really helped for some strange reason. And, acceptance. I’ve had weekly migraines since I have been 12 years old and chronic ones for two years or so. Accepting that I have migraines and acting accordingly is the most loving thing I can do for myself. People will understand. And those that don’t, educate them. I get frustrated for not being able to do what I want to do, but life isn’t fair to anyone, really, so I’ve got to do the best I can with what I’ve got. Keep pushing your doctors to get proper treatment, and if they don’t help, find new ones. You deserve to have a quality of life.

  • Katie M. Golden moderator
    5 years ago

    Doug,
    Your story was beautifully written and shows that your creative side is still working. I, too, am a lover of music and find it so difficult to return to singing with the chronic Migraines. It can be so frustrating.

    You are very well-informed about what’s going on and what your options are. You are your own best advocate and knowledge is power. You are off to a great start! But that doesn’t always translate into results right away. Since there are so many drug options and combinations, this can be a long process of trial and error until you find what works for you.

    We all know your pain on having loved ones not understand what you’re going through. I’ve found the best way to communicate to some people is to share articles or to share other people’s stories (or share your own!). There’s something about hearing the same thing you’ve said but from a different source that can make it seem legit.

    Our website has an amazing search engine and a great Forum area to ask questions, as well as a Facebook page to connect with others. I hope you find relief soon!
    -Katie

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