From Frustration to Anger

Since the age of ten, I have suffered from headaches. My parents took me to the doctor a number of times and every time he would tell my parents that they were sinus headaches. His prescription was to use salt water in my nasal passages and take asprin. As I got older and the headaches continued, I would ask my physicians what could be done. The answers were mixed from the sinus treatment my old doctor told my parents to use to the doctor actually changing the subject. Many avoided the issue.

When I reached my thirties, my headaches were coming with my menstrual cycle. Over the counter pain medications did absolutely nothing for the pain. My periods came every other week as I entered early pre-menopause and the headaches worsened. I had a routine check-up appointment with my physician and happened to been suffering with one of those horrible headaches when I went into his office. I was nearly in tears begging for him to do something. He asked me to describe the headache to him. When I was through, he told me he knew exactly what I needed – it was a migraine and he gave me two types of medications to try and told me to let him know which worked best for him to prescribe. The only reason he knew what it was and what to do was because… wait for it… his wife had the exact same symptoms and HER doctor gave her the medication. Sadly, I had to feel happy that his wife suffered, too, so that I could get something that worked.

Once I had the medication, I was set. I was so happy to know that I would be okay. It was a nightmare having the headaches and having to work while I had them. I can’t miss work; I’m the only employee and my employer is so incredibly difficult when I have to miss, that it’s less stressful to just work through the pain.

A year ago, my new physician (they come and go constantly), was concerned that I take too much migraine medication and suggested that I was suffering now from rebound headaches. He decided to send me to an ENT and a neurologist. I have two triggers: one is sinus infections and the other is my neck. The ENT did the first test I had ever had done and found an infection. He prescribed an antibiotic at a very low dose. It didn’t work, but he wouldn’t give me a higher dose due to a possibility of c-diff. I had to wait a couple of weeks to get that. It did help, but he admitted other than surgery, nothing more could be done. I then went to the neurologist. He had me describe the headaches and the triggers. He then explained how rebound headaches work. He wanted me to not take any kind of medication (my prescribed migraine medication, over-the-counter – nothing) for one month. I told him that although I understand the rebound theory and would love to be able to not have to take meds, I was concerned as to how I would make it through the day at work with a migraine and not be able to do anything about it. His response was to put one hand on either side of my head and push inward. That was the end of the appointment.

All of the frustration of years of dealing with so many doctors who wanted nothing to do with the headache subject. I finally get this medication that works and am told that it’s now causing my headaches. Told to squeeze my head instead of taking any medication. The cost of the medication and the fact that the prescription is only 6 tablets is sad. There was even one point that our insurance would only allow one refill per month. Any further refills in that time period would be out of my pocket at $110 each refill.

I’m now angry. I don’t understand why I haven’t heard anyone in the medical profession in this town even suggest that we see about treating the triggers. Wouldn’t that make sense? Apparently making sense is not a money making procedure. In the meantime, I continue the medication and get through the headache days and am grateful for the days I don’t have a headache. That’s all I can do.

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 (15)
  • lara
    6 years ago

    New doctors who want to change a working therapy are the absolute worst.

    Many, many years ago when I still married (hah) we lost our fantastic insurance and had to switch to an HMO. The internist was some flaky newgrad who I doubt had ever actually seen a migraine patient let alone one with my diagnosis (intractable migraine complicated by status migrainosus). This newgrad put me through hell and the entire time refuse to write a referral to a neurologist. When my ex finally switched jobs? I RAN to new insurance and a neurologist.

  • AmyBabee
    6 years ago

    Reading thru this story, I just think, “why are people so mean?” You dont have to be a Dr. to be nice to other people. Where is the empathy, caring and nurturing? Where is the ‘nice bedside manners’ that Drs. are supposed to be known for? I don’t know what I’d do if I have to run into any of these kinds of medical practitioners, bcos am betting I will one day with the way this migraine is going..God bless you Sandy, I have you and all of us in prayers; that’s all we’ve got when all else fails, believe me.

  • Monsmig
    6 years ago

    No insurance and debt for trying to get a doctors’s help that never came… It’s not worthy it sometimes thinking about giving up. When the doctor made me feel like a drug addict I could do nothing but cry still she didn’t understand but all I can do now is to make sure everyone I can knows what a joke of a doctor she is… Hoping some day I get relief

  • SanannasMama
    6 years ago

    I had my first migraine when I was 8 years old, and remember screaming continuously as they tried Children’s Tylenol, then regular Tylenol (having to practice swallowing a pill for the first time) and then later, someone gave me half a Darvocet and I laid in a dark room, slept a little, and felt the pain melt away. Since then, migraines and headaches have come and gone in waves. There was a period in high school where they were nearly every day, and were tolerable with a ton of ibuprofen, but they went away after I stopped drinking caffeine.
    The migraines continued through college about twice a year, where I would have to disappear into a dark room, drink a bit of coffee and take a hot bath, with ibuprofen and tylenol. I remember many nights screaming in pain, not wanting to cry because that always made it worse.
    In 2007, I was in a car accident and heard a pop as the car smashed into mine, pushing me 40 feet from a parking spot. The doctor at the University told me to take some muscle relaxers and do some Physical Therapy. I was in the last year of getting my Master’s Degree, going through a divorce, starting a new relationship and thus hormonal birth control, and I got a migraine headache that NEVER went away for more than a few hours in the morning if I was lucky. Over the counter medications would not even make a tiny dent in the pain, and made my stomach upset on top of everything. I think my body long ago recognized OTC meds from the tens of thousands of them that I had taken in two decades, and it just laughs at OTC meds.
    I went to nearly 30 doctors in two different states looking for a cure. I didn’t just want to treat the symptoms, I knew there was a reason for the sudden onset and that it wouldn’t go away like they had all my life. I went down the entire list of abortive and preventative medications. Some of them worked once, then never worked again. Some never worked at all, and ravaged my body with the side effects. Doctors were uncomfortable and frustrated that they did not have any answers. Some were downright mean, and looked down at me, and I learned long ago what the “oh no, another drug seeker” looked like. I was even told that I needed therapy! Most often, I was either told that it was in my head, or that my medications were to blame. I went off all medications for three months, and the pain was unbearable and only got infinitely worse. It was not a rebound! That’s not to say that I didn’t have rebounds – I had been to the ER many times and I knew the “I had morphine” bruised feeling in my temples and the sides of my head. But it was nothing like the burning stabbing constant pressure of someone forcibly jamming knitting needles in the back of my head. I didn’t have “aura” but my pain was sound and light sensitive. After suffering from the Infinite Migraine for about a year, I could no longer work full time. I couldn’t leave the couch. The pregnancy with my daughter was horrifyingly painful, and I had a really hard time taking care of her when I was in so much pain all of the time.
    At year three, I had developed a theory that I had three different kinds of headaches – the regular migraine that I have had my whole life, menstrual migraines that occurred at ovulation and menstruation, and the Infinite Headache – daily headache that never went away.
    Many people in the comments mentioned “Headache Specialists” which to that I will say, proceed with caution. The worst doctor I ever saw was a highly-touted “Headache Specialist” in a “Headache Center” that was nationally renowned. In reality, he was an arrogant donkey who grimaced and made nasty faces and talked down at me on everything, then told me that 100% of daily migraine was rebound. He did not have a response when I told him that three months without any medications and the pain was still there, only infinitely worse. He, as all doctors before, said there was no way that my accident could have caused the pain. He made fun of me for trying the chiropractor saying I was paying for his vacation house, but then wanted me to fork over $3000 for Botox when I had a $2500 deductible. Hypocritical. After telling me that my only options were Botox and Ergotamine which were well out of my price range, he did a quick “exam” and said, “You have a bit of TMJ there” and left. Worst doctor ever. His ratings on the internet showed it, and everyone in the hospital system that heard his name gave me a sympathetic glance. I got a letter months later that said he was “no longer with the hospital” and they left no forwarding information. He had been terminated. I have never been able to find anything on the internet that indicates his “national acclaim” nor has he done anything since then.
    Then I moved to Dallas and had a stiff neck that lasted for over 3 weeks. Something told me that I needed to dismiss all the doctors and get my neck checked out as a possible cause. The doctor that I went to in order to get the referral was the one who told me I needed therapy in a nasty tone, and said “I’ve had migraines and I’ve had ‘trauma’ and I would never say that they were caused by trauma.” I told her that one of my students had bone spurs in her neck and her daily migraines went away after the surgery. When I cornered her with, “Can you say with absolute certainty that this might not be the case with me?” She reluctantly gave me the referral. Within the week, the neck MRI confirmed that I had been walking around on a severely herniated disc that was compressing my spinal column. The damage done in trying to keep my head up had caused massive nerve damage in the base of my head, in the Occipital nerve. Diagnosis: Occipital Neuralgia. Most often misdiagnosed as migraine. Light and sound sensitive, massive amount of pain that could be felt by pressing on the skull, reading the symptoms was like reading a page out of my diary. I knew that this was it. I was hurried into surgery to fuse my spine with a plate and screws. Unfortunately, the surgery made the pain worse and the swelling brought the pain to unprecedented and intolerable levels. Luckily, I found an amazing doctor that understood exactly what I was facing: regular migraine plus Occipital Neuralgia, plus additional pain from the surgical swelling that can take at least a year to heal, and Cervical Dystonia (meaning my neck is so far distended that it sticks straight out and causes a lot of pain). He got my pain under control and it stayed under control until my husband lost his job and I lost insurance benefits. Now the pain is out of control and I can’t afford most of my medications. I pray every day that he find a good job with benefits so that I can find the right combination of medications to make the pain manageable, or so that I can have nerve decompression surgery.
    The moral of the story is: never give up. Keep pushing. Don’t let doctors (or anyone) tell you that you are to blame or that you are crazy or making it all up. Just because the medical community in general does not know enough about the condition, and that their fragile egos are wounded in not having a solution, it doesn’t mean that you do not deserve a tolerable quality of life. I missed the first year of my daughter’s life because of doctors telling me that I was to blame for my condition by taking medications, or that my pain was rebound, or that I was making it all up. Keep pushing until you have a diagnosis and a plan for recovery!

  • lara
    6 years ago

    I thought I had some bad neurologists before I found the one I have now. They had nothing on the ones you saw. Geez.

    Also, those guys at those top medical centers are going to have massive God Complexes because, well, they can. My first neurologist was supposed to be one of the best in our state. He was a jerk and a misogynist i.e you know, I got the “overly emotional women get migraines” speech. It was charming to get in the ’90s.

  • Nancy Harris Bonk moderator
    6 years ago

    Hi SanannasMama,

    I’m glad you finally got a diagnosis, but so sorry you had to go through so much trouble to get it.Unfortunately that is a story we hear all to often. It sounds like you’ve been through the wringer!

    Let me give you some information that may be helpful for prescription assistance. It’s for folks who don’t have medical insurance. Another thought is to ask the doctor for any samples of drugs you may take that have not become generic. Diana has written up an article with lots of links on how to find help. You can find that here; http://migraine.com/blog/patient-prescription-assistance-programs-help-getting-your-medication-2/.

    Sadly there are a few medical professionals that don’t seem to do well in the bedside manner department. Not all of them of course, but sometimes I think because they say the same thing over and over, they may forget to tell patients vital information thinking they’ve already gone over it. I’m pretty sure most of us would not unwittingly put ourselves into moh (been there, done that if we knew how high the risk was. Doctors and patients alike need to be educated on the implications of migraine abortive medications and/or pain relievers taken more than two to three times a week so we can avoid the possibility of moh. We have some information on moh in this article; http://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/.

    “Headache” specialists are ONLY those doctors who are board certified in headache medicine. Many doctors can call themselves “headache specialists” and anything they want. But if the doctor or the doctor in famous XYZ Headache clinic is NOT board certified by the United Council of Neurological Subspecialties, then they are not “true” migraine and/or headache specialists.

    You’re all set with a doctor, right?

    Hope this information is helpful,
    Nancy

  • Sandy author
    6 years ago

    Thanks to all of you for your support. Gee, this is actually pretty great! I feel so much better knowing that I’m not alone with the frustration of the doctors and the insurance companies. However, I’m just as angry that so many of us are being treated this way. You hear dozens of commercials about migraines so you know everyone is aware except for the medical and insurance communities? Anyway, thanks again for your comments. Caringmom: thanks for the tips – I’m anxious to look into those ideas. And thanks, Nancy for the links. I will be checking them out. Tbow: not ranting – you’re as frustrated as I am! Don’t apologize for a passionate response. It seems we’re all in this together. Thanks!

  • tbow
    6 years ago

    Sandy,
    I know exactly what you are talking about. My headaches started around age 10 and have consistently gotten worse over the past couple of years. My neurologist did the same thing as yours, give you meds and once they work tells you stop all meds which is BS because they think every employer will just let you stop to deal with the headache. I wish just once these so called doctors could actually feel our pain. I actually had botox done because I have maybe two days a week when I don’t have a migraine but still have a headache. The botox didn’t help and has made it worse from my point of view and when I tried to talk to the nurse practitioner she basically told me to give it another few weeks and maybe the botox would help and wanted to start me on a blood pressure medicine. I just want to be able to get through the day without everybody asking “are you okay.” My insurance company did the same thing too, 4 maxalt pills per month. I tried calling and explaining that it is impossible for someone with chronic migraines but they don’t listen, again wish they could have the pain for just an hour. Sorry don’t mean to rant it just aggravates me to no end how our whole lives we deal with the pain and keep going and the doctor still has the nerve to act like we are drug seekers. I pray the doctors will work harder at coming up with something to help the next generation who are dealing with these headaches. Again sorry to sound as if I’m ranting, this is a sore subject for me.

  • caringmom
    6 years ago

    Hi, Sandy,
    It is so frustrating to not get enough medication to get through a month! We also spent time with neurologists who tried to help, but were not headache specialists, and that was frustrating. Hopefully you can find someone to help you prevent your headaches. It is sometimes such a long process. My son had neck issues too, and we tried a specialized chiropractic treatment, ao chiro, that has helped a lot, but not yet 100% (It’s only been 8 weeks.) Some preventatives have partially helped, too. Don’t give up! We tried 6 preventatives, plus many rescue medications, IV infusions, and almost every alternative treatment we could find, and he finally has some quality of life back. Good luck!

  • lara
    6 years ago

    @SanannasMama

    Actually this just comes down to there are good doctors and there are bad doctors. At the moment, I’ve have an awesome neurologist who specializes in Migraines and just before I left Idaho, I had an awesome neurologist but prior to that, I cycled through three neurologists who were absolutely terrible. They didn’t listen and either medicated me to death or refused to prescribe the right medications. I had one stop seeing me and I have absolutely no idea why. I just got a letter in the mail one day saying he would no longer see me.

  • SanannasMama
    6 years ago

    Hi Caringmom,

    I wanted to give a word of caution – Headache Specialists are not the most knowledgeable about head pain issues. Really, most doctors do not have enough experience with different types of head pain to know the difference. But the Headache Specialist that I went to was the worst doctor I had ever seen! He was very arrogant and condescending and of the mindset that ALL chronic daily migraine situations were rebound. He was completely wrong and caused me to dismiss the line of investigation leading to my diagnosis because “he was a Specialist, so I guess he knows
    I have found a couple of different doctors who were competent enough to work with me. My condition is called Occipital Neuralgia which means the pain is in the nerves in the back of my head – not blood vessels like most head pain issues. When I press down into my skull, I shriek in pain. I can’t lie on my back. The best doctor I have ever had was a Pain Specialist who listened and understood all of my conditions and how they work together and he even called my Neurologist to coordinate my treatment plan. Doctor’s titles mean nothing. A good caring doctor that was very sweet and helpful to me was actually a Nurse Practitioner! I’ve found that the bigger the title, the bigger the ego, which means the less they are open to having the will and desire to be treating anything that they don’t understand. The best medication that worked for me was called Lamictal – there are a lot of head pain sufferers I know that had dramatic improvement

  • javiersotomayor
    6 years ago

    Hi Sandy. I am with you on this. I’ve suffered the same way throughout my life and have seen so many different doctors, to no avail. And I am also at the same issue with the medication, which insurance only covers 9 pills per refill, and one refill per month. It’s preposterous! I too feel angry that I get the rebound headaches, so it’s a real dilema. I’ve seen myself weighing in the severity of the pain to then decide if it’s Relpax worthy or not, considering how many pills left, days till next refill, and to-do’s in the next 24-48. I find these blog entries beneficial to my sanity because I now feel I’m not alone. Thanks for sharing. The only thing I can do sometimes… pray.

  • Nancy Harris Bonk moderator
    6 years ago

    Hi Sandy,

    You should be angry. “Hold your head and squeeze?” Was he serious?

    Don’t lose hope, there is much more that can be done! Let’s start off with sinus issues. Most people who have sinus headaches really have migraine. A sinus headache is usually accompanied by a sinus infection. Here is more information on this topic; http://migraine.com/blog/sinus-headache-or-migraine/.

    Trigger identification and management is a vital part of a good migraine plan. Learning what our triggers are let’s us avoid the ones we can and try to manage the ones we can’t like weather and hormones. For more information on triggers continue reading the information in this link: http://migraine.com/blog/migraine-management-essential-trigger-management/.

    The sad truth of the matter is doctor are taught less than 10 hours of headache medicine in medical school and if they went to school a long time ago, certainly much of information is outdated. Migraine specialists are doctors who are board certified headache medicine who treat migraine and headache disorder patients all day, every day and are current on research and treatments. Let me share with you some information that may help you: http://migraine.com/blog/looking-for-a-migraine-specialist/ and http://migraine.com/blog/how-are-migraine-specialists-different/
    .

    I hope this helps and will lessen some of that anger! 🙂

  • lara
    6 years ago

    “Hold your head and squeeze?” Was he serious?

    Actually, I think this is supposed to be the pressure relieves pressure concept it’s just communicated badly.

    Also, pressure relieves pressure works in adjunct to medication and not in place of it AND he’s telling her to put the pressure in the wrong place. So, the guy is still a jerk.

  • kate
    6 years ago

    That’s terrible. I take the injections and it is the only thing that works for me. Sinus issues are one of my triggers also. Haven’t seen an ENT but am seeing a neurologist next week. Sounds like you need to find another doc. Good luck.

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