When My Doctor Gave Up on Me

The headache specialist said: “Research is finding new treatments, but nothing is available to help you now. You’re the same age as my daughter. I would want her to have relief while she waits for better medicines.” He tried to soften the blow, but his words made it very clear: he could think of no other treatment ideas for me, so I should go on Opana, a long-acting opioid, until “science caught up with” me.

I heard: “You won’t ever get better. Your migraine attacks will always be severe and disabling.”

The doctor’s words and manner were compassionate. He truly wanted to help and for me to be comfortable, but the effect was the same as if he’d been hardhearted: I believed I had no reason to hope.

The year following that conversation is the one I call The Worst Year of My Life. I was in horrendous pain every day and housebound in a place where my husband and I had only one friend (who had a two-year-old and her own health problems). When I did manage to leave our apartment, the city gave me sensory overload, people were brusque, and the weather was so cold my head hurt even worse. All those elements added up to a difficult year, but the very worst part was that I’d given up hope that I would find a treatment that could ease my endless, severe migraine attacks.

The only future I could imagine held days filled with horrendous migraine attacks and nothing to ease the pain, severe nausea that prevented me from eating, crying myself to sleep every night while wondering how I would survive even one more day. Even reading, a pleasure and escape ever since I could read, was a landmine, as it had become a migraine trigger. Death was the only end I could see to this misery.

My headache specialist was so kind and truly sorry when he told me long-acting opioids and patience were my only relief. This prevented me from seeing how clearly his words led to my loss of hope. He didn’t tell me that *he* was out of treatment ideas, but that no existing treatment could help me. Ironically, when I did find relief three years later, it was with one of the oldest migraine preventives available, cyproheptadine.

I don’t believe one person can steal another’s hope. I gave mine up of my own volition, but it was in response to incorrect information. It’s not that I wanted the headache specialist to offer false hope instead. I needed a doctor who wouldn’t give up on me before suggesting some of the most basic migraine preventives available. I needed him to acknowledge that although he didn’t know what treatments to try next, someone else might. My current headache specialist has an incredible skill in balancing the truth with hope. He is honest about what a difficult case I present, while also recommending possible treatments and keeping me abreast of current research. The gist of his message is essentially the same as my former headache specialist’s, but I never feel discouraged when I leave his office.

I can tell you with confidence that I will never give up hope. I’ve already tried that. It led to even darker, scarier places than I could have imagined. When I reclaimed my hope, it was stronger and more realistic than before. Instead of feeling like a vague concept, my hope feels like a solid support that I can turn to in times of despair. Hope has given me so much, and led to so much relief, that I will again give it up. No matter what any health care professional may say to me.

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 (9)
  • mrst53
    2 years ago

    I will say that The Pain clinic that I found gives injections to alieve the pain. After 2 injections(medicare) then they can burn the nerve which will last for Months hopefully. Usually it lasts for over a year for me. The first injections are a type of cortisone. I have had them in my back and in my face in various places for different types of migraines. I have also had them in the back of my head too. The needles are very small and the pain is very light, compared to the pain of the migraine and pain relief is usually instantaneous.

  • theresajones
    2 years ago

    I suffered a blow this week too. My neurologist of 5 years who has done everything for my migraines and recently started treating me for a neck injury after a fall suddenly abandoned me in a very short message through the patient portal on the neurology practice’s website. Here is the exact copy and paste of what he wrote to me: “Theresa, This many symptoms may require that you be seen in ER and have MRI sooner than later. I have nothing left to offer you as outpatient advice. Also your insurance (Medicaid) is a hindrance so we advise you to present to ER if you have this much symptomatology.”

    I had to take an ambulance ride because it was too bumpy in the car at my current pain level and since he’s treating me for a herniated disc my neck needed stabilization. I printed the response from my neurologist that I copied and pasted above to take with me because I did not want the ER to think I was a drug seeker or that was arrogant in asking for an MRI because you just don’t walk in and demand that.

    I “presented” at the ER and when the physician’s assistant that treated me pulled back the curtain I asked him to read my print out. He laughed and said something to the effect of “you can’t come in here and ask for an MRI and it’s booked all night for inpatients anyway”. He said all he could do was to give me a shot to bring down my pain level. A nurse came in with an IM shot of Dilaudid. About 30 minutes later the same nurse came back and said the PA-C said I was “good to go” and he prescribed me twelve 2mg Dilaudid to get filled.

    The neurologist that dropped me has me scheduled for an MRI this Sunday. Sounds odd but they do diagnostic tests on the weekends. I’m worried because got a certified letter in the mail from Medicaid Wed the 21st saying I had to jump through many hoops before I could be approved for an MRI and as of now it is denied. Also, it says a copy was sent to my neurologist as well. The question in my mind is this, I got a robo-confirmation call Wed the 21st and I pressed “1” to confirm. No one has called from the billing department at my neurologist’s or Medicaid to cancel the MRI telling me it is not covered. This has happened before with migraine treatments, but the neck thing is new. So I’m just going to go Sunday for my already scheduled MRI unless someone calls me today (Friday the 23rd) and says I’ve been denied. I need help. I have been abandoned. No one has offered me medication. Thankfully my migraines are under control due to SPG blocks every 3 months. I used to have chronic migraine and 3-5 intractable migraines that required inpatient DHE treatment so that’s a major win. He has written me a basically a lifetime supply of Imitrex, but for my neck his nurse called and said he’s going to give me 30 Norco 10mg and two fillings of Tizanidine to take at night until I can be seen by the practice’s pain clinic. Then I got the call. The neurology practice I go to takes Medicaid, but it’s internal pain clinic does not. They referred me out to a pain clinic that does take Medicaid and said they were going to send me a new patient packet and call for a consultation appointment, but they haven’t. I’m worried they’re either waiting for the MRI that may not (or probably won’t) happen or Medicaid has decided that I have to try 10 different things before I can be seen by that pain clinic. The chances of him filling the Norco again is slim to none. I’m only supposed to take it in the case of severe pain and to use sparingly. He doesn’t prescribe opiates usually. And NSAID pain relievers I cannot take because I have stage 3 kidney failure and if I take Advil, Aleve, Torodol, etc. I’m entering dialysis territory.

    This is cruel and unusual punishment and even though I don’t know you I feel like I do and I hope by sharing my story you might feel the slightest bit less abandoned. Your doctor sounds like he at least has a heart and is kind. You’re not alone being left out to dry by your doctor and I took comfort in your story knowing I wasn’t the only one either.

    I apologize for going on and on but I can sympathize with you on the Opana ER as well. I sought treatment for a herniated disc at “back clinic” a few years ago. It turned out to be a practice of doctors that I used to call “legal drug dealers” with no long-term solutions (I think I was right as they have now been shut down). They ordered an MRI, did not share the results with me, sent the MRI to a neurosurgeon (THEIR neurosurgeon), put me on Opana ER then sent me to THEIR neurosurgeon who asked me “does Opana ER work for you”? I said it relieves the pain and he said good because you will probably be on it for the rest of your life. I wanted to die then and there and I was only 34. I got a copy of took that MRI because it was done at a hospital not the back clinic and took it to an orthopedist that operated on my shoulder a few years prior because I trusted him. He referred me to a pain clinic where they had techniques to relieve pain without leaving me on a medication forever. They went between cervical spine joints with a hollow needle and then inserted a very fine electrically charged needle with high frequency electricity and “burned” the nerve connections that go to the brain and transmit the sensation of pain therefore relieving the pain. I was on pain medication but as soon as I healed up from the soreness of the procedure I tapered down the amount of opiate pain meds to zero and my neck has been pain free ever since…6 years now. I fell and twisted my neck to the other side about a month ago and my neurologist said they could treat it addition to my migraines and it’s turned into a huge mess which I described above. With Medicaid there’s almost nowhere to turn.

  • DonnaFA moderator
    2 years ago

    Hi, theresajones. Thank you for sharing your story. I’m sorry to hear that you are having such a difficult time. Please know that you’re not alone, we’re always here to listen and to share information and support.

    You might try to Google MRI Payment assistance, some states do offer assistance programs for MRI, unrelated to Medicaid, that may be available in your location. If you have not yet found a new doctor, you might be interested in reading Is It Time For a New Migraine Doctor? to help you find a doctor in your area who fits your needs.

    I’d also like to invite you to join the conversation on our Facebook page. We’re glad you’re here. -All Best, Donna (Migraine.com team)

  • penina
    2 years ago

    I had a headache specialist give up on me once, after only one visit, but he didn’t tell me until months later in email and was not at all nice about it. It made me very angry, not because he couldn’t help me but because of how and when he told me. Fortunately I live in the North East and I can take a train to another city to see a better doctor who is not giving up on me. But it is difficult to maintain hope after so many years of nothing working.

  • DonnaFA moderator
    2 years ago

    Hi, Penina! I’m so sorry to hear about your experience with the headache specialist. Hopefully, your new doctor is providing the quality of care that you deserve.

    We’re glad that you’re here and if we can be of any help please just give us a shout. We’re always happy to share information and support. -All Best, Donna (Migraine.com team)

  • DebinIndiana
    2 years ago

    I am so happy that you have found someone like that as a specialist. I have yet to discover it. Even in a large city like Fort Wayne, IN, let’s just say, I don’t even feel like they believe me when I tell them how bad the anti depressants have made me sick and sleepy all the time, they crossly say to me “you are taking too much Maxalt”, even though I am following directions on the insert to a fault. The blame always seems to be on me. Now she wants to try Effexor? Oh boy… I have tried the search thing on the main page and it gives me the neurologist group I am going to, another doctor I go to for my arthritis pain but they told me they don’t specialize in migraines, so not sure why his name even comes up, so not sure I would even trust that list. If anyone has suggestions or help, I will listen. Thank you and good luck. This site has been helpful to know we are not alone. It is definitely so difficult for others to understand it all.

  • DonnaFA moderator
    2 years ago

    Hi, DebinIndiana! I’m sorry to hear that you are having so much trouble with your doctors. It’s terrible to feel unheard, and like you are not invested in your treatment. You may be interested in reading Is It Time For a New Migraine Doctor?. The article includes information and links to find a local doctor. Please know that you are not alone, and we are here to support you. -All Best, Donna (Migraine.com team)

  • penina
    2 years ago

    Oh, (I don’t know how to edit the other post) please read about side effects and especially about Effexor withdrawal if it doesn’t work.

  • penina
    2 years ago

    Here’s a list of board certified headache specialists. You may need to travel to see one: https://migraineresearchfoundation.org/resources/find-a-doctor/doctors-certified-in-headache-medicine/

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