Not a nose tumor….

Not a nose tumor….

It’s an odd moment in life when you find yourself hoping for a nose tumor.

A few years ago, when migraines had derailed my working life and I was spending most of my time in bed, I went to see my headache specialist. At that routine exam, he announced his retirement. Perfect timing, I thought. To make matters worse, he admitted that he was at a loss as to whom to refer me to due to the complexity of my case. I suspected my case didn’t bring him any joy: he had not been able to “fix me.” The truth was, I had no real improvement under his care.

Headache clinic bonding

After some research, he suggested I consider a three-week, in-patient stay at a headache clinic in Michigan. The comprehensive behavioral and medical program was designed to evaluate, assess, and provide treatment for patients with migraines. And though I certainly had already been evaluated, assessed and treated multiple times for migraines over the course of many years, it was my hope that by going, perhaps I would find some new solutions.


Based in a small hospital setting, patients had roommates and daily group and individual sessions about how to manage pain and stress. It was the first time I’d ever met anyone else with migraines as bad (or worse) than mine. We bonded with each other about our conditions, and yelled at headache commercials on TV for making light of our condition. And every day, we were run through a variety of medical tests and scans including blood draws, MRI’s, CT scans, and the like. Patients met with a team of medical doctors regularly to check in regarding progress and the specifics of their case.

Other patients’ test results

During my stay, many of my new acquaintances would return from these team meetings absolutely giddy with news. One gal appeared in the cafeteria with news that a test had revealed she had low spinal fluid – a relatively easy fix that might mean a complete remedy for her migraines. Another reported gleefully that they had found a benign nose tumor, something that was quite likely causing her pain. And though it would require minor surgery, the prognosis was very positive. Removal of the tumor would likely stop the migraines.

The rest of us attended the team meetings with baited breath, oddly hoping for some similarly strange but treatable diagnosis. Of course no one wants a nose tumor, but what a poignant moment in the life of someone with migraines. To find out that all this time, it was something simple. Not a complex neurological condition. Something that could be addressed, and would mean,  at the flip of a switch, a life free of pain.

No magical fix

But no such luck for me, or for most of us at the clinic. It was like waiting in earnest to be asked to dance at the prom. The handsome boys reaching just past us – our hearts racing, thinking we were about to be chosen- only to have our hopes dashed. Ultimately our prognosis felt like a sort of life sentence:  “You have chronic migraine.”  But I knew this going in. I was sent home from the hospital stay with a lot to think about, a group of good friends, a big bill to pay off, and no new diagnosis. There was no easy solution. No tumor to be removed. Just a lifelong wrestling match with an invisible opponent. And a beautiful awareness that I wasn’t alone in the fight.

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 (25)
  • mjadavis
    2 years ago

    hollybee: I noticed in one of your responses that you are in NC. I am in NC as well and been searching for a migraine/headache specialist to see in our state. I have been to Wake Forest Baptist Hospital to see a neurologist about 2 1/2 hour drive for me. I try to make it about once/twice a year. But I would love to find headache specialist if you have found somewhere nearby I would love to find out who so I can try them. I have been through 4 neurologists in last 10 years but they don’t have the time or experience with the migraines in particular to spend. I would love to see a headache clinic if in our state or reasonable close by. If you have found anything in our region helpful please let me know. I have fortunately not experienced the stroke from birth control and migraine meds like you. However I believe because I had been reading this forum and when my ob and neurologist prescribed me topamax, elavil and birth control together and then I suddenly had a drastic change in headaches I called and got help right away. This forum has been very helpful to me in communicating with my doctors. They stopped all and now on verapmil and Midrin for emergency relief. I believe that Ob doctors need more education in meds that react to migraine meds so they won’t create this storm for other patients. I really appreciate all I learn from your articles and others comments.

  • Holly Baddour moderator author
    2 years ago

    Hi mjadavis – Thanks for reaching out. I’m sorry you’ve had a hard time finding a migraine specialist in NC (there is a real dearth of them nationally). Please check out this resource (the first link in the article has the most comprehensive NC list) – the practice I use is in Durham- but take a look and find which one is closest to you because the list is comprised of all migraine specialists: https://migraine.com/blog/looking-for-a-migraine-specialist/ Best of luck to you in your search! Warmly- Holly B (migraine.com team)

  • Nonster
    2 years ago

    So Hollybee was the expense and lack of further diagnoses a bi downer for you! If you had to do it again, would you?
    I’ve been at it 11 years with migraines but never an inpatient facility. I’ve done every preventive, abortive, everything and I, like you, have chronic migraine. I’ve made some progress over the years which is the best I hope for these days. Just wondered if you would do it again with hindsight being 20/20.

  • Holly Baddour moderator author
    2 years ago

    Hi Nonster- that is such a good question and thank you for asking. I think I would lean toward yes. I want to feel as if I have tried everything in relation to improving this horrid condition and because these clinics truly do help you look under every single rock, it is a bit of a relief (even if a letdown) when they find nothing. I think we all fear that there is some serious underlying condition that is driving our migraines, our hope is that it is something benign that can be fixed in a snap, but our FEAR is that it might be something just terrible. So, gaining clarity that I have a straightforward simple diagnosis of chronic migraine (though quite a complex condition, as we all know) was worth it.

    Additionally, I was truly grateful for some of the behavioral therapy techniques I learned. I sort of ‘woke up’ to realizing that I was carrying around some unhelpful attitudes and views of pain and it was healthy for me to let those go. I wrote a piece about one of the classes I took, actually- and how helpful it was, in case you’re interested: https://migraine.com/blog/on-acceptance-productivity-and-pain/

    Finally, it was the first time I realized I truly was not alone in having migraines of this severity and intensity. I had never met anyone in real life who had it as bad or worse as I. This condition is so isolating, there was some deep relief in connecting with others and going through that part of things as well.

    On the downside, as I outlined in the article, my hopes were high, and made only higher by being surrounded by those who were diagnosed with fixable conditions. It was hard when those hopes were dashed. Also hard was being sent home with an incredibly high bill that my insurance didn’t cover which took (literally) years to pay off. Lastly, they also tweaked my medication regimen, which I know does worlds for some- tho ultimately did nothing for me but make me gain 30 pounds in the next four months.

    So, there were ups and downs, but all in all, like I said, I’m grateful I went. I need to feel as if I’ve searched and tried everything and the inpatient thing is definitely a different beast than anything you can replicate on your own. And, as you’ll see in this comment section, it really has changed the lives of some. I do agree with another commenter that the folks at these clinics are fabulous.

    Perhaps if you’re able to keep your hopes at a reasonable level- and go in looking for a tune up rather than a fix (and are prepared for the bill) you’ll have no regrets at all.

    Hope this helps! warmly- Holly B. (migraine.com team)

  • Cutmyhead
    2 years ago

    I’m so nauseous and dizzy today that I can’t get up from bed and even the photosensitivity doesn’t help either.
    I wish Michigan was closer for me to go like Pam and Holly go. Im realizing I might get some new ideas.
    I’m glad your new Doc is working well for yoU Holly..
    Has anyone been at the Ketamine camp in Jefferson ? I saw that katie Golden wrote about it. Any experiences? That would be closer for me. I wish it was in my Doctor’s hospital.

  • Holly Baddour moderator author
    2 years ago

    Cutmyhead- I’m glad you wrote back and am so sorry you’re having a rough time today. I’m on day five of an intractable migraine- overdue for botox next week. I actually live in NC- nowhere close to MI- so I’ve only been once. If I lived closer I might’ve gone more than once, but it’s not inexpensive, and as I said, for me it provided few new answers. It was holistic in its approach, which I appreciated and did connect me with others which was a first (and a relief) for me.

    Katie Golden is a terrific resource- I have not been to the camp you are asking about- but I hope others will chime in on your question- or that you will ask her directly for any further information you’d like on the topic.

    Wishing you a better day tomorrow- maybe even this evening! – warmly, Holly B. (migraine.com team).

  • Pam
    2 years ago

    I go to this clinic in Michigan. I have suffered from chronic migraines for years. Not only have a learned a lot about migraines but I have learned more about my other conditions. They explained that they were commonly found in migraine patients. I was told that I was hypermobile. They explained how this was the cause of my odd aches or pains due to just standing or my ankle or knee would just give out. I have multiple reasons for my migraines. Many of my migraines are trigger from neck and shoulder issues. It’s really referred pain. I have many food allergies and triggers for my head pain. They suggested an elimination diet. Yes it was difficult but eye opening. I found new triggers: gluten, grapes, sweet potatoes and broccoli. Finally I was taking Topamax for 13 years. She thought I became us to it. Since I had success with it years ago, she put me on a similar medication. I also take an anti-inflammatory which help my CH migraines. I am not perfect but have reduced my migraines to about have the month from daily. Plus the severity has decreased. We are working on the hormonal component currently. Head pain is not always just one reason. Sometimes it is a mixture of many conditions. It takes a specialist to wean out all the issues. I’m fortunate that it is only a hour away. I truly believe I have gotten my life back. Unfortunately all migraines are not as treatable as mine. But they are doing trials to find solutions for all. Their motto is they will not give up. What they don’t know today, they may know more tomorrow. I love the whole staff.

  • Holly Baddour moderator author
    2 years ago

    Hi Pam- thanks so much for sharing your experiences from the MI clinic. I was really moved most by their holistic approach. I enjoyed specifically the behavioral therapy and physical therapist who also identified my as a hypermobile gal.

    Always good to have a fresh set of eyes (or in their case, multiple sets of eyes) on a chronic condition.

    I’m so glad the experience proved so fruitful for you and resulted in such a reduction in the frequency and severity of your migraines. That is just wonderful to hear and I’m deeply happy for you. And yes, you are extremely fortunate to live so close to such a resource. For me, it is many states away so very difficult logistically, especially at a time when my children are young.

    Thank you for encouraging others to continue searching for solutions.

    Warmly, Holly B. (migraine.com team)

  • pigen51
    2 years ago

    Everyone, I am a 56 year old man, with migraines since I was an adult with a few horrible ones as a kid. I guess I will give you my history, just because I am suffering now with only a 7 or so. I had enormous potential as a high school senior, was popular, senior athlete of the year, fairly high IQ, etc. I had college scholarships for football, music, etc. But I messed up and fell in love. lol. I found myself married with a very young, very pregnant wife. So, at the age of 18, I started to work in a steel foundry. I spent the next 35 years of my life there. I went through a divorce after 11 years, surprise. Remarried a great lady, who I am crazy about after almost 25 years. Lost my job of that long time, because basically I suffer from chronic daily migraines. I was covered under the FMLA, and they did not like it. They were looking for any way to get rid of me. The cooked up a reason to send me for a random drug test, which of course I passed, but they said that I had alcohol in my system. I of course did not, but they would not prove it, they just fired me, under their no tolerance policy. I could have fought it with a lawyer, but their lawyers that they used for such lawsuits are the same ones that were involved in the tobacco lawsuits. In other words, big guns, and I am just a little fish, and had no chance of winning. I found other jobs in foundry type jobs, but by then, I could not make any of them work. I then found a job as a maintenance man in a trailer park, part time. I did that for 2 years, until I finally had my SSD come through after 3 years of fighting, and with a lawyers help. What I have learned over the course of years about migraines is pretty much the same as you all, with a few exceptions. First, I also went through a number of neurologists, to the point where none of them in my city will see me, because they have given up, basically. I went to a headache clinic in E. Lansing. I live in MI, and they tried many, many different things. I had an MRA done at MSU medical center. After all the years and all the drugs, and in dozens of different combinations, and several different times, the only thing that works for me is a narcotic for pain and to make me sleep, and something for nausea. The problem is of course, that all of the smart doctors will tell you that it is not a cure, but just a bandaid, and it can cause rebound H/A. Duh, I know it is not a cure, I have been searching for a cure with doctors and on my own for 40 years. Now, with the government deciding that relieving pain for legitimate pain patients is not worth doing, because of the people who abuse drugs, it is almost impossible to get relief. They also made it so hard for people to get prescription pain meds now, that they are turning to heroin or other hard drugs, with sometimes deadly results. I had a friend who is a doctor that I discussed this very thing with back when they were talking about doing it. So where does that leave the thousands of us who suffer like this? As you all know, if it were a disease that others could see, it would be so much easier. My wife is wonderful, but it is hard at times for her, as well. She has plans for me, and then I am simply too sick to do what she had in mind and she assumes that I either am exaggerating or just gets put out, even though she knows it is real. She has taken me to medicenters many times, only to have them refuse to give me narcotics to help me, instead opting for a dose of benadryl, a steroid, and maybe some phenergin. Of course, it does not work, and so I am home for 2 more days sick, and she is upset, because we have to pay a fairly large co-pay for something that didn’t work. I am sorry to vent here, I know that you have heard it all before, and many have it much worse. At least now, we have enough income to survive, without needing food assistance and even at times having to go to food trucks for help. This after I used to earn nearly 70K per year. It is certainly humbling, but it also taught us a big lesson. We saw that the people who were helping those in need were often those teetering on the brink of poverty themselves. The poor look out for each other, regardless of what the better off say or do. And so we are much more conscious to help others, whenever we are blessed, by passing it on. It is the only way that life has much meaning, and it helps to avoid worrying about yourself when you worry about someone else.

  • Holly Baddour moderator author
    2 years ago

    Dear pigen51- Thank you for sharing your story with such honesty. You are right that most of us can relate to what you have outlined. The roller coaster ride that is chronic migraine; the ways the condition brings us to our knees both physically and emotionally; how it challenges our marriages, our finances, and our professional lives. There is really no aspect of our lives that it does not impact or affect.

    Then there are the unexpected gifts that it brings. And you touched on them all: gratitude for any moment of wellness, and for every time the system finally acknowledges our condition; humility; and, compassion for others who are suffering in any way at all in this world. Our hearts go out to them in a way they probably couldn’t have otherwise.

    I’m so glad you are a part of our community. We are lucky to have you with us. Please keep in touch and know we are always here for information and support. Holly B. (migraine.com team).

  • mason1776
    2 years ago

    Hi Hollybee,

    We’re you at Chelsea with Michigan Head Pain & Neurological Institute (MHNI)? I had to wait a year for an insurance change; but, I spent 3 weeks in their in-patient program.

    I have had migraines since age 10. Two months after my 40th birthday, I had a stroke caused by my migraines, coupled with birth control pills, a lot of Imitrex, and work stress. Three weeks in Michigan – hoping daily for a nose tumor, a brain tumor, SOMETHING! – I wound up with a diagnosis of chronic daily migraine. Gee…thanks. I also wound up with a new combination of prophylactic and abortive meds, a prescription for PT, and a continued slide into depression.

    Since then, I’ve been able to add Botox, chiropractic care, regular therapeutic massages, and other treatments, I’ve actually managed to have a few days here and there without excruciating pain.

    Thanks for sharing your story.

  • Holly Baddour moderator author
    2 years ago

    Hi mason1776- Indeed- I was speaking of MHNI. Sounds like we have a fair amount in common (save for the stroke part, so sorry to hear of that). Very glad to hear of the days you have that are free of intense pain. Thank you for joining the discussion. Warmly- Holly B. (migraine.com team).

  • maxgordon
    2 years ago

    Yes, you know things are getting weird when you are hoping for a brain tumor. Like you, I always hoped that my neurologist would find some easy fix (or at least workable treatment) for my migraines. I held out hope that after menopause they would abate or even disappear (my mother’s did), but instead they grew more frequent and more severe. I’ve pretty much exhausted the preventives (none have worked; one more to try), and am resigned to living the life of a relative hermit, avoiding as much as possible all sources of scents/odors, sounds, extreme temperatures, exertion, unknown foods/beverages…well, you know the drill. Several months ago I learned that I also have RA, and I was absolutely thrilled to find that out—not because I want another source of unrelenting pain, but because for so many years I had suffered without a diagnosis. It’s amazing how relieved we feel when we have a name for what ails us. So even if it’s “just” chronic migraine, at least you know, and can focus on moving forward. Slowly. Without jarring your head, getting your heart rate up too high, or…again, you know the drill. Take care.

  • Holly Baddour moderator author
    2 years ago

    maxgordon- thanks so much for your comment- glad you could relate to this article. Like you, I’ve been holding out hope for the menopause thing for years until I met with an OB/migraine specialist who said that if your migraines worsened during and after pregnancy then they would likely do the same during and after menopause. Migraines often clear for many during pregnancy- but, of course, not for me. That’s when they became chronic. So, there went all the hopes and dreams I had been counting on for so long.

    So, yes- back to the living within the hermit–like limits of chronic migraine. And my goodness, so many limits.

    I’m sorry to hear about the additional RA diagnosis but totally understand what you mean about the relief of a diagnosis. It’s terrifying when our bodies are misfiring and acting up and we can’t figure out why.

    Thanks again for reaching out. Warmly, Holly B. (migraine.com team)

  • Cutmyhead
    2 years ago

    Im sorry for the loss of your Neurologist! I would not want to be in your shoes but, it may happen soon ! He’s very busy and he’s the Best! I dont want any narcotic-giving Doctor, or any Doctor who knows less than him! . Thanks for telling us about your experience in Michigan. I am thinking to go and, I am too hoping to be able to “dance at the ball”. Many times I’ve hoped for a nose tumor, a brain or eye tumor, but so far, nothing grows!! The horrible nausea, the photo sensitivity, the worsening motion sickness, are just “chronic migraine”.
    No matter what ball I attend I will always be one of the ugly sisters that, will not dance of joy with any new fixable diagnosis . Im planning to look into the ear and the little crystals that float for equilibrium. Maybe my motion sickness improves and I get less migraines..
    I’ll keep trying ( if I can get up from a migraine)
    Go, Ugly Sisters, Go!

  • Holly Baddour moderator author
    2 years ago

    Cutmyhead- first, i LOVE your username. I beg my husband to cut my head off quite frequently. For some reason, he always refuses.

    Second, nausea. I’m definitely one of your ugly stepsisters on THAT one. Today, I write barely able to see straight from the side effects of the only anti-nausea med that works for me. Why must we choose between pain/nausea and consciousness? Let me know if you find any luck with the crystals.

    Third, I have to share that there is light at the end of the retiring doctor tunnel. The retirement of that doctor, while terrifying at the time, led me to the best neurologist/migraine specialist I’ve ever encountered who is the most wondrous fit for me. Much better than the previous one. The migraine world has much to do in the way of enticing great doctors to specialize in the field- we just don’t have enough out there- but there are some great ones.

    So glad you joined the discussion. Most warmly, Holly B. (migraine.com team)

  • Kristen
    2 years ago

    I spent 13 years in bed, took many medications, tried natural remedies & prayed. Finally tizanadine at night for 3 months decreased my migraines. I have part of my life back which is excellent. So, how to integrate back into a part-time job without rocking the migraines? Any ideas would be appreciated

  • Holly Baddour moderator author
    2 years ago

    Hi Kristen– Thank you for sharing. What great news that you have experienced a turnaround from chronic to episodic. That is tremendous news and gives hope to many of us.

    You pose a great question and one worthy of discussion and feedback from many members of our expert community out there. May I suggest that you post your question on our facebook page? Either in the comment section of this article or in your own post? I just want to make sure you get as much feedback, advice and as many ideas as possible on such an important topic. https://www.facebook.com/MigraineDotCom/

    My own feedback would be to try to find a job that offers flexibility in terms of scheduling, and maybe even location, and one that is as low-stress as possible to set yourself up for success in every way you can. Also, if you’ve been on disability in the past, you may want to keep the door open on that, if possible, in case you need to step back into your benefits for a bit as you re-establish your footing in the workplace. You can discuss with them how or if it is possible to do so if you are interested. Doing all these things might help you feel less anxious about returning.

    I hope others will chime in here as well. Again, thanks so much for sharing. Best of luck to you as you take this wonderful step. – Holly B. (migraine.com team)

  • LadyBug679
    2 years ago

    I’m there with you 🙁 In fact, I “jokingly” tell my SO “I’ve got a tooma”–he then knows I’m having a migraine (to which, the correct response in his best Arnold voice is, “it’s not a tooma”– which is supposed to make me chuckle a little, but at the same time, I almost wish it were something tangible… but if it’s a tumor, it’d have long since busted out my head I think, since I’ve had migraines since middle school, so about 25 years now) (p.s., just in case you missed the reference, it’s to Kindergarten Cop 🙂 )

  • Holly Baddour moderator author
    2 years ago

    LadyBug679- Thanks so much for sharing this awesome back and forth you and your husband have established as a way to deal with the pain. I think finding and bringing humor to the nightmarishly intense pain can be incredibly important in a marriage, actually. I was just mentioning to one of the other community members, whose username is CutmyHead, that I often jokingly ask my husband to cut my head off after several days of an intractable migraine. It’s a simple way to bring levity to an otherwise awful situation and it always lightens both of our moods and makes us giggle.

    Warmly, Holly B. (migraine.com team)

  • autumn999
    2 years ago

    I’m right there with you! Almost “wishing” for something, but not reallllly. Keep fighting the good fight.

  • Holly Baddour moderator author
    2 years ago

    Thank you so much for the kind words, Autumn999. You too! – Holly B. (migraine.com team)

  • marycr8on
    2 years ago

    I’m almost sorry you didn’t have that nose tumor, Holly! I wonder if people with other chronic conditions do this? I know I’ve wished for some odd, correctable syndrome or disease, because of the constant pain. I think not only do we hope for relief, we want other people to know that the pain is real and we need to be able to justify the pain for ourselves, as well.

  • Holly Baddour moderator author
    2 years ago

    marycr8on-
    thanks so much for such a thoughtful comment- I like your reflection to take it further. I hadn’t thought about the fact that if we DID have something diagnosable – something that could be seen and that could be pointed to- it would serve as a way to take this invisible disease and make it provable to others. Very astute point. Thanks so much for sharing. Holly B. (migraine.com team)

  • The Migraine Girl moderator
    2 years ago

    I know just what you mean, Holly & marycr8on. I recall getting my first brain MRI years ago, almost hoping there’d be some obvious and non-dangerous tumor that would explain my migraine history!

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