The Time I Thought I Was Almost Cured

A few years back, when I first went to my amazing complementary care doctor for the first time and was a loyal patient, doing everything he recommended, I started to feel amazing.

At one point, I think I went nearly a month without a migraine.

And when migraines did come, they were not as severe or debilitating. I’d also learned to use mindfulness-based stress reduction to respond rather than react to the fact that I had a migraine. I handled them gracefully instead of getting upset. I gently asked them to leave with as much politeness as I could muster rather than battle them and fight.

I felt the best I had in years.

At one point, I thought about my blog. What if I was, in effect, almost completely cured of migraine disease? What’s the point of having a website with the name “The Migraine Girl” if the girl in question no longer is a frequent sufferer of migraine attacks?

Of course since then I’ve had lots of ups and downs, and I’ve tried to think of the entire trajectory of my disease as something that is part of my life rather than something I am constantly trying to fight. Watching my migraine frequency and severity wax and wane, going from chronic to episodic and back again, reminds me of why migraine, for many people, is a chronic, recurring disease. The entire nature of chronic illness is that it changes form as the years go on. As with autoimmune disorders (of which I have a couple), the disease can lie in wait in an almost-dormant state for months or years, only to resurface unexpectedly down the line, prompting you to reevaluate your life and your treatment regimen.

Right now I’m not in a great phase. I’m definitely closer to being mostly healthy than I am to being severely chronic (knock on wood), but I’m not doing as well as I wish I were. I’m trying to accept this, but it takes time and seemingly infinite patience.

How do you deal with the up-and-down nature of this illness? Have you had migraine-free periods of your life followed by long periods of frequent episodes? How do you cope?

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

View Comments (18)
  • deborahvan-der-harst
    6 years ago

    I am 49 and have had migraines for only 2 years. They coincided with a Stage 3 Chronic Kidney Disease diagnosis. My kidney says they have nothing to do with each other. Anyway, I saw a neurologist after my headaches became daily from overuse of medications. I was put on a steroid to stop the headaches, but I had to endure the pain until the steroid started to work. I weighed 116 lbs. and was very physically fit, but migraines stopped me from working out and steroids caused me to gain weight. Next I was put on daily meds, both Topamax and Gabapentin. Maxalt is my rescue medication. For most of the 1st year I had migraines more often than not. I ballooned up to 150 pounds which was bad for the kidney disease and the migraines. I was miserable. Then I developed frozen shoulder. It was excruciatingly painful. I had to start taking hydrocodone (Vicodin). Combined with the migraine pain I became very depressed and slept a lot. I decided to try a new neurologist at the Diamond Headache Clinic in Chicago. I had MRIs with and without contrast which showed changes in the white matter in my brain which could have indicated MS so my neurologist asked me to see a specialist to ensure that I didn’t have MS. She didn’t think the white matter changes indicated anything more than the usual changes than sometimes occur with migraines in people who experience auras. I next made an appointment with a pain management specialist to explore getting nerve block or botox injections. I wanted to stop taking so many drugs that had to pass through my kidneys. I had to wait a month to see the pain management specialist. I didn’t know how I would make it until then. But during that time, the pain disappeared. I credited it to the Bystolic my regular neurologist had recently put me on. I also realized my menstrual cycle was irregular. It was 6 weeks before I got my next period. It was also that long before I got my next migraine. During that six weeks I was thrilled. I thought that maybe I was cured, but I didn’t want to get my hopes up. I started working out again and restricted my calories and I lost 15 lbs. I felt great and my self esteem was boosted with my weight loss. I wondered if I fit in with all the other migraine sufferers now that I no longer suffered from them. Then, my head started to hurt again slowly on the right side. The pain increased little by little and day by day. I chose to ignore it. But one day it hit me like a stick of dynamite at 2:00 a.m. in the morning. I was bedridden all day the next day. The migraine lasted 7 days and I finally called my doctor. They had me come in the next day. They prescribed three strong drugs that I had to take for 10 days, and I also had steroid injections in my scalp, an occipital nerve block. Finally the pain began to subside, so I tried to workout again. The pain came back. It’s not as bad now, but I’m not able to workout. I get exercise induced migraines and I can’t take the meds usually prescribed for them because of the kidney disease, and the Maxalt doesn’t help much. I try to keep a positive attitude because I think I am perimenopausal, and when I finally hit menopause I think the migraines will stop. At least I hope they will.

  • Nancy Harris Bonk moderator
    6 years ago

    Hi deborah,
    I’m sorry to hear you’ve had so many health issues recently. Topamax should be used with caution (if at all in my opinion) when someone has kidney issues. I’m a bit surprised you were put on Topamax because one of the potential side effects is getting kidney stones and becoming excessively dehydrated. To read more about Topamax click on this link; https://migraine.com/migraine-treatment/topamax/precautions-and-warnings/. I wonder if your diagnosis is truly accurate (and getting an accurate diagnosis is so important) since it so nicely coincides with the onset of your kidney disease. I’m not a doctor, but it sounds like a second opinion may be in order here, on both fronts – the kidney doctor and neurologist. https://migraine.com/migraine-headaches-doctors/.

  • Arden Hansen
    7 years ago

    “Could you talk more about mindfulness-based stress reduction”?
    After 50 or more years of having migraines the words coping and management certainly apply. Although some seem to have found a treatment I wonder if it lasted , like your story. When there is hope that something new is going to help, migraines seem to retreat. But I have been disappointed so many times its hard to play that game anymore. So its a matter of learning to live with the disability, accepting it as a disease and making the best of the non-migraine days. I keep medications to a minimum and deny myself the obvious triggers. These latter have changed over the years. Regular sleep and food is a big help.
    The best period of my life was being pregnant 4 times. I would have kept on except I hit 46. I never had a headache then. But even after menopause, I still am visited about every week.
    I cope by having hope in the resurrection and a perfected body. This migraine trial is only temporary and and if I endure it well I will be blessed later on. I also try to learn something from each episode, even if its only to have more patience. This way the migraine is a friend instead of an enemy.
    But I cry during it sometimes, just like you do.

  • Janene Zielinski
    7 years ago

    A few things that help me cope: writing in my journal about my pain and honest feelings, cherishing good memories and good people, making time for fun when I have migraine free moments (instead of just catching up on unfinished projects), allowing myself to cry and grieve over the time and opportunities lost to pain, acceptance of the nature of the disease, and giving myself permission to budget what funds I can – in order to buy the healthiest foods, supplements and care (then committing to following the healthy plan).

    Everyday is a struggle. There have been plenty of times I thought I was “getting better” just to turn around and have it all go downhill. I don’t get my hopes up anymore when I try something new, but it won’t stop me from trying as long as I am reasonably certain it won’t cause more damage. I am much more careful as to what I will try since some prescribed “off label” treatments I tried in the past only ended up making me worse. Be as kind to yourself as you possibly can.

  • Ellen Schnakenberg
    7 years ago

    All great suggestions! Thanks Janene 🙂

  • Susan Hegarty Monahan
    7 years ago

    I am the same struggling with daily migraines. Have become worse, like you Lynne, over the last 4-5 months. Terrible stress. On Topomax, which I think may be contributing to my stress. Really worried as to the amount of motrin and Imitrex I am taking. Revisit this in June with my Neurologist. So exhausting. Been struggling with these monsters since I was in first grade it seems.

  • Jaylene Ancheta
    7 years ago

    There were a couple of times previous to this one that my migraines were going away. Like before, I hope and pray that they are going to away for good this time. However, I don’t think that they are. I still have some instant triggers and still have to be careful. If it were not for my daughter and my husband I don’t think I would have been able to deal with them. A few times in my life I became suicidal and the things they said and done for me is what kept me alive and going. Even now, even though I’m not in that stage any more I sometimes think about death. For instance if I ever came down with cancer I know that I’d just let it kill me. I wouldn’t fight it at all. To be free of migraines once and for all, no matter how, I am wiling to do most anything. Even now that I am doing much better, it is still the love from my family that keeps me going.

  • Jaylene Ancheta
    7 years ago

    Thanks. I am passed that stage now and doing much better.

  • Julie Danielson
    7 years ago

    So Sorry for your migraine pain. I know what that pain is like because i have gotten migraines in the past that felt like someone hitting me in the head with a hammer. when excedrin migraine pills came out i would take 2 at the onset of the migraine, and 30 minutes later it would be gone. Years later I was going thru another kind of pain that no doctor could fix, and so I prayed everyday to God for 2 and ahalf years and one day the pain was there, and the next day gone. Its been 4 years since and the pain never returned. God can heal you, ask Jesus to come into your heart, and to forgive you of your sins, ask Him to heal you, and keep asking every day. He can heal anything. Read your bible daily, and go to a born again christian church, and obey God. God is Awesome. Dont ever think about taking your life. Suicide is a sin and people who commit suicide go to hell. and hell is pain and torment forever. I will pray for you that God heals you, and when you ask Jesus into your heart, you will be with Him in this life and in Heaven one day.

  • Diana Prine
    7 years ago

    I have 2 many diagnosis and didn’t get migraines till late 30 when I went through the change of life naturally. I was in pain too for 3 yrs before my hysterectomy, so I was thinking ok Migraines can be hormonal and people with neuro or other diseases are more prone to get them? anyways I had them so bad was in bed almost everyday and my eyes would spasm But now I Don’t get them that frequent and not as painful I still can somewhat function except to light asnd noise and getting sick but I just keep going on and take a pill if need to be tyvm for your support and help.

  • Lynne Day
    7 years ago

    Over the last six months, my migraines have gotten worse – more frequent, stronger. I take Topomax daily for this, but my stress is what I feel is causing it. It’s really hard to have to go to work with pain, and sometimes I just have to. I’ve been researching the Mindfulness-based Stress Reduction as I’m to the point I’ll try anything. I’m hopeful.

  • Renee Renn
    7 years ago

    I pray something works effectively for you as soon as possible.

  • Debbie DiMarcantonio
    7 years ago

    I just found out that my migraines were triggered primarily by uncontrolled high blood pressure… after suffering a severe seizure and being put in the hospital this issue was finally addressed and was also discovered that I had breast cancer that had spread to my upper digestive tract and lower intestine and to some areas of my bones with contributed to my back problems that also led to the headaches… I still get headaches from time to time since being diagnosed but they are not as severe and often find it is due to caffeine withdrawal which became full-blown when I had to basically go ‘cold-turkey” while in the hospital for a week while undergoing tests.. and now while undergoing chemo I can only take tylenol.. amazing how one’s life can change in a month’s time and find atleast some relief to the headaches.. thankgoodness there were no tumors on the brain..

  • Debbie DiMarcantonio
    7 years ago

    on April 25th I mean!

  • Debbie DiMarcantonio
    7 years ago

    and an occasional dose of zometa for strengthening the bones.. and they are talking about putting me on Tamoxifen soon. I will have a full body PET SCAN on June 26th to see what changes have occured since starting chemo on May 25th..and I have actually been feeling pretty good , other than tired and some pain in my back the day or two after chemo… ..I am only 1 week behind on my treatment due to a mastitus/ slight bladder infection which resulted in an 102 temp and having to be on an antibiotic for 14 day… chemo proceeded as scheduled this week.

  • Debbie DiMarcantonio
    7 years ago

    2 blood pressure meds.. acid reflux med. iron for anemia.. a pill to combat nausea. etc..

  • Debbie DiMarcantonio
    7 years ago

    I am also on seizure medicine… Keppra – with all the meds I am on in addition to the meds in the chemo treatment nothing like being on no medication whatsoever to basically 5 that I take twice daily… that is already more prescription meds than I prefer to be on.. I have trouble swallowing pills so have to take one at a time and because of the bitter taste can’t mix with applesauce but seem to do ok with pudding if need to.. otherwise I make sure I drink lots of fluids especially water.. something else I was not good at doing… lots of changes and adjustments.

  • Ellen Schnakenberg
    7 years ago

    Oh Debbie, words are just not enough here. I’m so sorry about your diagnoses. If you don’t mind me asking, why have they limited you to only taking Tylenol? How long will this be the case? I am worried about MOH for you…

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