Attempting to live a full life with chronic migraine at 22

Two weeks after I had my wisdom teeth out, I started having headaches. I was on a month long break from school, so I was getting plenty of sleep and had a low level of stress. I figured I would give it time to resolve itself. Over the next few months however, my headaches got worse, and it became clear once they turned into daily SEVERE “headaches” that something else was wrong. This was over two years ago.

Since then, I have battled against this disease psychologically and with real-life treatments. At the time I was diagnosed with Chronic Migraine, I was a full-time sophomore private college with an office job on the side. I had more energy than I could explain before the headaches started. I was actually genuinely happy to do all of the bottom of the totem pole work they gave me at my job. I had the energy to get up at 6, go to 3 classes, work until 5, do volunteer orgs until 7, and study until 9 then do it all again the next day. I did this all with great health, amazing friendships, Dean’s list status, and plenty of time for family.

The diagnosis stole my life. What once was easy became tiring and difficult. I became somewhat depressed, yet stayed determined to find out what was wrong. I was convinced it was the wisdom teeth surgery that had caused my pain-it seemed so clear cut. My neurologist was a headache specialist who said he had never heard of that causing migraines. He told me to start exercising and eating better. Exercise easily made the headaches worse and I already was eating well and had tried cutting out all of the supposed triggers. OTC pain meds did nothing and sumatriptan made me feel, well…drunk.

I tried IV treatments for the migraines which just left me feeling neasous. After spending $1000 on chiropractic work, I decided I had had enough of that. I was hospitalized and morphine was the only thing to get rid of the pain. Massage did nothing – the therapist asked if I had been in a car accident because I seemed to have whiplash.

My neurologist then suggested everything was “in my head”. When I got the opinon of a psychologist, she spent quite a bit of time with me, and determined that it absolutely was not in my head. Reluctantly, my doctor put me on a daily medication for prevention. A month later I was oddly 30 pounds heavier, with stretch marks and cellulite covering my body. I contacted him and then and ONLY then did he let me know that yes, that was a common side effect. I am permanently scarred, and have only lost 10 of those pounds since exercise makes the DAILY headaches worse.

I’m not myself anymore psychologically since I constantly battle the pain. I still have made Dean’s list every semester since and am now a Senior in my last semester of college. I have the opportunity to try Botox and would also at some point like to try physical therapy. Money of course is difficult since I’ve had to miss so much of an already low paying job (for headaches, and for being sick last semester, as well as a tonsillectomy) and am a college student.

This is my story. I hope one day to be free of this pain, and to really be myself again. I want to be able to live as a young person while I am young. I want to be who I really am again.

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Comments

View Comments (8)
  • Jen author
    5 years ago

    Hi Chantelle-

    My best advice for how I got through things in school (and how I continue to live my best life now) is to make sleep a priority and don’t procrastinate. I’m sure you’re doing all of the right things in terms of headache management-avoiding triggers, drinking plenty of water…

    Unfortunately for me, I still am not sure what the source of my headaches and migraines are. I do have reason to believe that they stem from extremely tight muscles which is why I am now pursuing treatment for my muscles. I have a strong belief about treating the source. Physical therapy helped for sure, but I need continued work as well.

    If your jaw is a problem I’d suggest talking to a dentist or facial pain specialist. You’re likely grinding or clenching during the day or at night. A lot of the time if you make yourself aware of it, or set alarms on your phone, you can begin to relax your jaw during the day.

    Also, are you doing anything to manage stress? I know my stress buster before was running and I can no longer do that. I take the dog for pretty long walks now instead. I do relaxation exercises in attempt to relax all my tight muscles. If your muscles are a problem also be sure to use ice and heat!

    Let me know if you’ve done all of the above/what’s worked hasn’t! Thanks for sharing.
    Jen

  • Chantelle Walsh
    5 years ago

    Hi Jen,
    How did you manage to get on the deans list with chronic migraine? I am 23 and I have one previous bachelors degree in biology which I barely passed. I am now in nursing school and I am struggling to get B’s and to make it to my clinicals. I can barely look at the computer most days and my jaw and neck feel like they are made out of cement. I can’t concentrate when I have a headache (which is always) and it is making school incredibly hard. Do you have any advice?

    P.s. I also wanted to mention that migraine prevention meds have made me gain about 30 pounds plus stretch marks and all that fun.

  • Emily
    6 years ago

    I hope some different treatments find one that helps! My health started to fall apart as I started college (in my case, I just ended up in and out of PT for lower body fiascoes – my headaches came later), so I know how frustrating it can be.

    You should absolutely go to a different neurologist. This guy sounds pretty awful. And you mentioned that morphine was the only thing that seemed to help – I was in a similar position, where a combination of strong narcotics was the only thing that helped. But I found out later that a lot of my headaches were rebounds from having taken the painkillers. It ended up being a vicious cycle. I don’t know if you’ve kept taking them, but it’s something to consider.

    Best of luck!

  • Nancy Harris Bonk moderator
    6 years ago

    Hi Jen. If your neck is giving your trouble it might not be a bad idea to have an MRI of it. Cervicogenic headache is pain that is felt in the head, but actually comes from the neck. Teri has written an article on it that explains it very nicely- http://migraine.com/blog/cervicogenic-headache/. Maybe this could be contributing to some of your head pain?
    Good luck and let us know you make out with the MRI, please?

  • Jen author
    6 years ago

    LOL I do not know WHY I put this as anonymous but THIS IS ME! I really appreciate the other comments because it really is difficult to feel so alone in your struggle-especially at college where everyone is young and carefree, and you..well you seem boring and crabby in comparison. Most of the time I wish I could just say well I USED TO BE… Nonetheless, I did try botox (amazingly my insurance covers it 100%) and it has helped a little bit-but I don’t really want to continue this as it is on my face (as well as neck and scalp) and I’m only 22! I don’t want to end up looking like some of those botox horror stories. My neurologist did actually suggest an MRI of my neck, which might be useful since it hurts all the time! anyways..I appreciate the reaching out and I will continue to! It helps 🙂

  • mycrazymigrainelife
    6 years ago

    Dear Anonymous, thank you for posting your story. I can definitely relate. I too am in a similar situation as you are and i am 20 years old. I have just been diagnosed with chronic intractable migraine. I am enrolled in college full time, have a part time job ,and have also made the dean’s list. I find i now have to work twice as hard to maintain my grades and also be able to study with so much pain-every day. I feel sad and anxious sometimes since the pain really does get to me. It is hard to be able to live life fully and i am still learning how to do so.
    I have had abdominal migraines throughout my childhood and my parents did not know this and thought i just had many tummy aches. I then started having severe migraine headaches at 9 years old. At 12 i got my first intravenous infusion for a severe migraine and uncontrollable vomiting. Things were better after that for a while and my migraines were not so severe or frequent. Throughout my teenage years i got them a lot more frequently but they always seemed to respond to two advil. In the last year, so much has changed. This past summer i went to the ER for an infusion again since i had severe pain everyday since i finished exams in May. The exams were very stressful and i had migraines throughout them and i figured they would go away. They never went away after that. December/12 I got diagnosed with chronic intractable migraine.
    I have been to two neuros so far. Right now i feel completely neglected by my neuro who i called in january since my pain meds were no longer working for me and i had a bad reaction to a preventative. He has not had the decency to call me back after i called the secretary politely numerous times and left messages for him. Migraines been a constant battle for me so far and the most challenging thing i have had to deal with. I can’t make plans, organize myself, schedule since i have to go with the flow and see what kind of pain level the day has in store for me and then decide what to do. Keeping my head up has been the toughest thing i have to do with all this pain especially when i have no support from my neurologist and i have been suffering with nothing to relieve my pain-ever. I really urge you to seek a new neurologist or headache specialist since it is truly disgusting that as a neuro he told you it is all in your head, after years of med school and education that is what he came up with. Unbelievable. I am going to try to do everything i possibly can to make myself better. This includes getting a new doctor who will call me back. You can overcome this and we have to be strong and keep moving all the time. What has helped me the most is a blog that i am writing that first was a place i can vent so i don’t seem like a complainer. Then i have tried to turn it into something that can help other migraineurs and prove that we are not alone in this. Please take the time to read it and i hope it helps you in some way. I hope that we can help each other since we are in really similar situations. I wish you all the best and please message or comment here.
    http://mycrazymigrainelife.wordpress.com/

  • DebbyJ56
    6 years ago

    I am 56 and have had migraines since I was five yrs old. Chronic migraines since I was fifteen. Daily migraine disease for over six years. For the first two years, I pushed through and held my job. Best job I ever had, I loved that place and the people. Then the headaches worsened, I collapsed at work twice and they had to call 911. At my bosses suggestion I took short term disability. At that time my Neuro took the opportunity to try different drugs that caused me not to be able to function. I could not walk around without holding on to the walls. I also dealt with weight gain. But caught it early and stopped the meds. When I tried to go back to work, even though I was doing badly, my boss suggested I take long term disability. While I was gone (three months) he phased out my position. I was crushed. I applied for State Disability and got it on my first try without a lawyer. I live a lonely life filled with medications. Can’t read books or do crafts that I used to love. I take my dog for short walks depending on the weather. When I go out I have to wear ear plugs, and can’t stay long due to the over stimulation. I have done every treatment known, except surgery. I did have 40 hours pain free a few weeks ago after being in the hospital for infusion treatments. Other than that I have had a migraine every day for over six years. The loss of income was devistating to us. We live very simply now. I buy most of my clothes at Goodwill. Friends have walked away because I cancel on them all of the time. This is a frustrating disease.

  • Carolyn
    6 years ago

    Your story is very similar to mine, although I have suffered chronic migraines my entire life. They got progressively worse in college, and like you – I really just pushed through anyway. I really feel for you financially and would not have been able to make recent strides in bettering my health without help from my parents even though I have a full time job with benefits.

    I’m 25 now, and have seen 4-5 different doctors in the last few years alone. It’s only recently that I’ve found a specialist who has been able to get an accurate picture of what’s going on with me and suggest things that are actually make a huge impact on my health and quality of life. It’s been a horribly defeating process, and it’s endlessly frustrating to have no real answers.

    SHAME ON YOUR NEUROLOGIST. That’s one of the worst and cruelest things you can say to someone with invisible chronic pain. You should see a headache specialist instead. They often approach migraines quite differently than neurologists. You posted anonymously but please message me privately if you’d like to hear what things I’ve had success with in the past few months. I really know exactly what you’re going through. We’re similar ages and I know how it feels to be laying in a dark room, regretting the life you’ve barely had a chance to lead…feeling like you have no control or way to change any of it.

    I really feel for you, and completely understand what you mean about the psychological battle. At some point the burden of living with the pain day in and day out becomes worse than the pain itself. Even those sympathetic to me cannot not possibly comprehend the pain, and the fear of never ending pain that becomes your daily burden with chronic migraines.

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