Medical PTSD: My Experience with a New Doctor

Around a year ago was when my former family doctor hauled off and read me the riot act about my frequent visits to the Emergency Department. I still feel vulnerable enough about this that it’s hard to write about, which I think is why I used two cliches in that first sentence.

Being reamed out by my docotor

Last February, Dr. S opened a file and with a sort of faux concerned look listed all the reasons why it was inappropriate for me to seek emergency care for the severe migraine attacks I couldn’t eliminate on my own. At first her biggest problem was that I didn’t call to notify her, but as I immediately explained, I did notify my pain specialist and the facility where I go for my CGRP trial. I saw from the stunned look on her face that she had forgotten about the study, but she recovered quickly, continuing to rail at me about the cost to society (since I was on Medicaid) and even used my children against me as she paced, agitated, back and forth in the room. “What do your daughters think, when you are always heading off to the ER?”

Just looking for a place to get help

I began to cry. “They know that I have a disease, and they are happy that there’s somewhere I can go to get help.” I still can’t believe this happened, over a year later. Dr. S then said something about how since I was crying and over-reacting to what she was saying, perhaps I needed psychological care. I knew that was totally uncalled for and it is also one of the worst things to say to someone with migraine (“it’s all in your head”). I looked up at her. “I already am getting psychological care.” Which she knew.

Finding a new doctor

I stormed out of her office and refused to return for any reason. John would be starting a new job with new insurance, so I waited to try to find a new doctor. I did transfer my migraine care over to a local neurologist soon afterward (I had recently left my headache specialist), and Dr. S refilled all my basic meds over the phone for the next year. John started his new job, and I was on fancy new insurance for exactly three months before something went wrong with paperwork and starting January 1 – no insurance.

My local friend Julie, who has migraine disease as well as several other serious chronic illnesses, did a lot of research in looking for a new family doctor for herself, and generously offered to try out a guy that seemed good and report back to me. Her appointment with Dr. C went extremely well. I called and made an appointment for myself, hoping that my insurance situation would be resolved. I had to wait six weeks. When the appointment arrived in mid-March, I still didn’t have insurance.

Nerves kicking in

The day before, I felt the nerves kick in. I talked to Julie again and she was very reassuring, but in the evening I couldn’t stop weeping, symptoms of a sort of medical PTSD from repeated disappointing and terrifying experiences with those in the medical profession. The paperwork was very intimidating, with a page consisting of a sort of controlled substance contract and a promise of none being prescribed at the first visit. It needed a signature. I have my own pain specialist, but I had been hoping to acquire something different for sleep, anxiety, and restless leg syndrome which I decided seemed hopeless, despite Julie’s reassurance he had offered to refill a controlled substance medication of hers (she declined since she gets it from her neurologist).

The morning of the appointment I was shaking and had a hard time stemming the tears which seemed to just pour unabated, but I gathered my paperwork and my mom’s credit card to pay out of pocket for the appointment and dutifully went and sat in the small waiting room of the outdated office building in which Dr. C has his practice. I took scared selfies and posted on Facebook for support, which I received. When I was called back I felt calmer and the nurse was very nice. Dr. C, however, was not.

Another distant and cold interaction

From the start, perhaps because of what I’d written on my medical history and hopes for the day’s visit, he was distant and cold. We discussed my successfully treated conditions (hypothyroidism, depression, gastritis, and my hormone replacement) and that I would need nothing from him for migraine. He seemed tired and irritated and said he supposed there was nothing to change but that he would not prescribe my estradiol patch, which had always come from my family physician, not my OB/GYN. Startled, I asked if he could refill it until my insurance situation had been resolved so that I would not have to make an appointment with my gynecologist without insurance, and he refused. He said one month only.

I sat quietly during the quick exam and knew I would not breathe a word of my insomnia issue. I was already fighting tears again when he said quietly in what I interpreted as a judgmental tone, “And, I have to ask, why did you leave your previous doctor?”

Why the interrogation?

My heart plummeted and the tears I’d been fighting began to leak down my face. I was livid. Our shower faucet is broken. When we finally get a plumber in to fix that, if it is a different one than we used last time, do we get interrogated about why the change? “What happened with your last plumber to make you require my services?” No, they just do the job and are happy to get paid. While initially I had hoped for help with my insomnia and anxiety, I certainly was not asking for any pain medication or help with my complicated migraine disease situation. All I had discussed with him were my few standard prescriptions and desired care for future regular medical issues.

While crying, humiliated, I haltingly told the story of what had happened with Dr. S. Of course, he said nothing, but he also did not look the least bit empathetic or seem to understand. I shrank into myself, all my worst fears having come true, and felt that I never wanted to come back, but yet, I am now stuck with him as my new primary care physician, because I can’t appear to be doctor shopping.

When I left, the bill was $240. I pay only $50 out of pocket to see my neurologist.

When the plumber comes to fix our faucet, I’ll be sure to let you know if I get accused of “plumber shopping.”

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 (40)
  • clm65
    9 months ago

    I hesitate sharing this but here it goes. I work in a Neuro office and suffer from migraines. They started 3 years ago and not long after I started working in this office. I noticed most if not all of the comments on here were from women. The doctors I work for are nice, they are better than most. One thing I have picked up on is…they tend to take men with migraines more seriously and treat women like they are crazy. I am a patient of one of these doctors and I have the same symptoms as many of the men that come through here. I will see more thorough tests, meds, etc. When I first started seeing the doctor, I was told it is hormones because all my tests came back fine. I reacted badly to every migraine medication he has prescribed. I gave up and after research started eliminating a lot from my diet, that has helped. I know it does not work for everyone. I still get bizarre symptoms but the head pain has decreased significantly. I should mention when patients come in, my office is darker due to removing most of the fluorescent lighting because it makes my migraines worse. That tends to spark a conversation with patients and when they find out I get migraines and we talk about the craziness and weird symptoms, they don’t feel so alone and feel someone understands. I find it unbelievable that most doctors are clueless when it comes to migraines. It angers me that the person we go to for help and understanding usually turns out to be a waste of time and money.

  • Elizabeth Roberts-Zibbel moderator author
    9 months ago

    clm,

    Thank you SO much for this revealing information about your place of work. I think a lot of us who are women suspect that it might be the case that we are not taken seriously simply because of our gender, and there are some studies revealing this to be the case; some of them very disturbing. I had a wonderful female neurologist 20 years ago who was still a resident, and I just tracked her down and now am traveling to Chicago (about 4.5 hours away) for an appointment with her in July. It will be worth it just to get some respect. Take care and thank you for being part of our community! ~elizabeth

  • Elizabeth Roberts-Zibbel moderator author
    10 months ago

    It’s so interesting and sad to me how many of us have stories like this. I’ve been thinking about it a lot and mentally writing another article. However, I did want to let you all know that my second appt with this doctor actually went well. I brought my mom with me, and he was both kind and thorough. I thought maybe last time he’d had a bad day, and picked up on my fear and desperation and just couldn’t handle it right then. Still no excuse, but at least this time it went better. I hope for the same for the next appointments of everyone here.

  • Purplelady63
    11 months ago

    It is so sad that we have to go through such situations because doctors and so-called nurses are not in the business to actually help you anymore, only to make sure you do not spend too much of their time, with your complaints. Many MD offices today will tell you that they will only discuss one problem per visit. That is crazy, now I have been a nurse for 38 yrs and I know and have seen the change in care, and it makes me mad and it takes a lot to make me mad, but today people do not get care or caring people to ask questions and take your information.

    I am going to tell you my story and then tell you how to help yourself communicate in today’s uncaring medical society.

    I was in the pain management office with my husband because my migraine was so bad I was unable to drive. In comes the PA, and she started asking questions, I told her some of the problems that I was having and wanted to know if the MRI of the brain was back and what it said, I also told her I wanted the report, she looks at me and said well it will not help you to have the report, most people cannot understand it, I told her I was a nurse and would understand it. She asked me if I was still working, I said no, I was forced to retire due to the migraines, she then said when did you retire, I explained it was 3 yrs ago, she said to me I am surprised you remember how to read the reports. Really, I looked her in the eyes and told her I was not brain dead, but she could leave the room and not return, for I was not going to try and talk with a fool. My husband almost fell off the chair laughing and the Physician came in and asked what was the matter that the PA said I would not speak with her again. I told him what she had said and he had no comment. He wrote the scripts I asked for and I left, I have never returned to that office… So I hear you all, so here is a good way to be prepared for your visits. Put together a binder with tabs, the tabs will say Xray, PCP, MRI, etc and request and place all your different documentation in your binder, keep up a written diary in the front of your problems and migraines length of time and medication. make sure you copy your information to hand to the receptionist after you have filled out the information sheet. But do not put all your info on the paper that is so tiny you can only state barely one thing. “NOTE please see attached information” on the tiny line. They can scan in your written or typed info into you computer file, take your book into the appointment with you so all your info is handy. The physician will know your serious and not going to play games with them about your conserns and problems. We have to have something with us, because when we are hurting and in tears we need to be able to help ourselves with paperwork the doc and Pa can read it is the only way they will take you seriously and of course they will think you are obsessive, but you say yes since physcians do not take my problem with migraines seriously, and I have difficulty thinking straight with a migraine. I hope this helps.
    IN THE SAME BOAT:

  • Elizabeth Roberts-Zibbel moderator author
    10 months ago

    Thank you so much Purplelady for your long and thoughtful comment. I appreciate it so much that you took the time and wish you all the best! I am encountering a new neurological issue (article at some point) and I’m starting NOW with keeping careful track and using all the suggestions you listed above. I’m glad you’re part of our community! Take good care! ~elizabeth

  • ouchie
    11 months ago

    It took me four years for any doctor, male or female, to take me seriously. My migraines were dormant for nearly 20 years. Then I had a baby and they came back, different but recognizable because I get the Alice in Wonderland distorted body perception. I was desperate, not so much from the headache but from the relentless mind fog, muscle pain, exhaustion and gastrointestinal upsets. 1st doctor, a woman, insisted that I was depressed. Nope. Treated me so shoddily I held off until my next annual checkup. That 2nd doctor was a jerk who laughed condescendingly at me when I said I had a history of migraine and told me (without asking a single ?) that I needed to watch less TV (I barely watch any), eat healthier and exercise more (I do both). Gynecologist? Migraine and hormones are a myth. Finally found a good general practitioner through a friend, who finally believed me and referred me to both a neurologist and to a food allergist. Need to go back to the neurologist. She was nice, but I am DREADING it! And I have been lucky. My sister has horror stories, like the one in which some ahole doctor told her to be thankful she only had migraines, because she could have cancer instead.

  • Elizabeth Roberts-Zibbel moderator author
    10 months ago

    ouchie, thank you so much for your comment! I’m so glad that you have begun having better luck, and as I said in a separate comment, my second visit with the doctor in this article went much better. I really hope it goes okay with your neurologist. Let us know! Thanks so much for being here. ~elizabeth

  • Ronan
    11 months ago

    Well, I shop. I have a new GP that I hope is going to work out. If not, too bad. Sometimes it helps and sometimes it doesn’t, but have you filed a complaint? I don’t know where you live but in Canada, we have Colleges of Physicians in every province. We can file a complaint.

    Shop around. It’s ok. We need the best care possible. If someone doesn’t foot that bill, there is someone else.

  • Elizabeth Roberts-Zibbel moderator author
    10 months ago

    I think it’s possible that in Canada it is a little different. Fortunately, when I went back to the doctor in this article recently it went MUCH better. I do need to find a new neurologist though (and I will be filing a complaint about recent treatment there). Thank you for the support Ronan! ~elizabeth

  • Ronan
    10 months ago

    My pleasure. What this forum is about.

  • mbright14
    11 months ago

    I’m so sorry that you had this experience. I saw a neurologist years ago who was belittling and dismissive. It was so bad that I was afraid to go see him by myself. He was always more polite when my husband was with me than when a girlfriend or my mom was with me. It was maddening. Fortunately, at that time, I had a wonderful family doctor. I eventually quit seeing the neurologist when I started having children since he refused to prescribe for me while I was pregnant. My Ob-gyn did her best to get me through that time. She was wonderful. And so was my family doctor. Unfortunately, the family doctor moved away. The practice he was in had trouble keeping family doctors in general. I kept being switched to the new doctor, who would stay for a little while and then leave. The final doctor was the last straw. Unfortunately, I was in the middle of a migraine cycle that just would not break. Apparently my history had been erased from the system, and she seemed either unable to process or unwilling to believe my own account of what medicines I had already tried. She was dismissive and condescending. Wanted to write me scripts for medicines I’ve tried multiple times and either couldn’t tolerate the side effects or received no help from. I actually (as a 38 yr old) brought my mother with me the second time I saw this doctor because I knew she’s tough as nails and would advocate for me when I was in too much pain to think clearly. Mom was spitting mad when we left that appointment, lol. I never went back. Thankfully, my first appointment with my current doctor, I was in less pain and able to think clearly. It’s a whole lot easier to maintain a confident and assertive facade when you’re not in excruciating pain. I’ve determined from here on out to take a confident, yet pleasant attitude with doctors and let them know upfront that I am looking for a compassionate doctor who will listen to what I have to say and take me seriously. I broadcast on fb when I am looking for a new doctor and ask for recommendations for doctors who are approachable, not threatened by patients who do their own research, and compassionate. I pay specific attention to recommendations from friends with chronic health conditions. I am very thankful to have found a caring primary care doctor. Unfortunately, I haven’t found her preventative suggestions to be all that helpful. But she has been great about continuing to prescribe my abortives even though I don’t always take her advice. Currently considering seeing a doctor of functional medicine.

  • Elizabeth Roberts-Zibbel moderator author
    10 months ago

    mbright, that is exactly what I did to find this doctor (seek recommendations from chronic illness friends). However, the second visit went much better. I put a general comment at the end of this thread about it, but I think maybe he’d had a bad day and couldn’t handle my fear and desperation that day. It’s not an excuse though. I’m just glad he was great when Mom and I went back a couple weeks ago. Good luck and keep us updated if you try functional medicine! Not actually even sure what that means so I’ll have to do some research. Thanks for being here! ~elizabeth

  • MidrinMan
    11 months ago

    Additional note. I have a really smart RN wife. When doctors would treat me badly she would give me advice. When I went back to the doc I had a game plan. But what would happen is the doctor would REDIRECT me. I see this in nursing homes all the time. Patients decide they want what they want and CNAs are masters at redirecting them in the direction that they need to go. It took me a while to figure it out but I did finally figure it out. I hope this helps someone. I had to go in with a 3×5 card with specific questions. When the doctor would redirect me I had to redirect him back to the question. What he then would do is simply fall quiet. It was an uncomfortable silence but it was very telling. He simply wasn’t going to address my issue. I even brought my nurse wife to a few of my appointments. That helped. He seemed uncomfortable. I still got the runaround but I had a witness. It has gotten so bad that you need to bring your lawyer to your doctor’s appointments. Not every time, but every now and then. You’d better believe medical practitioners have legal advisors. You should too. Something else we can’t afford. Welcome to the new age.

  • MidrinMan
    11 months ago

    Hot damn. Finally, a story about this topic. Seven years I spent RAILING about my cluster f#$% HMO not treating my pain. My psychologist told me to keep a journal, and I did. I was stunned to learn what I was forgetting. Blocking out. At the end of the seven years the PSYCHIATRIST told me my issues were not treatable by psychiatric measures. Really?

    Wow. I wasn’t imagining it. It wasn’t psychosomatic pain. Good old fashioned migraine and injury pain. How about that?
    At the beginning of this experience, I was told to listen to my body, take notes. It would seem I was suppressing my pain. Yet, at the end, I was told to ignore the pain, pretty much what I was doing to begin with. What the hell? Turns out, my constant railing against my HMO not treating me never ceased.

    What I would learn later is you can be diagnosed with a mood disorder on your medical file, but they will never tell you. (Angry people have a mood disorder) They fear you might hurt yourself. Or kill yourself. I am an open book. “Too honest” as one doctor put it. My experience with “doctors” has taught me that they are not honest with you. That’s a fact. They constantly drop the ball. The medical system did not fix itself. It blames the victim.
    Sounds like gaslighting.

    I was a happy guy till a work injury put me in the path of a dishonest doctor. A workman’s comp doctor. Don’t get me started on her. Now, I am “managed” but not fixed.

    Recently my doc wanted to put me on statins. Statins give me horrible muscle pain and cause me brain fog. I said no. While he claimed he was just suggesting it he proceeded to push the point for the next ten minutes. Hardly just a suggestion. I explained i have enough pain issues. He said my argument was flawed and wasn’t logical. This concerns me. He then started typing into my file. This really concerned me. What is he setting me up for? Do I need to chill out? Do I need a new doctor?

    This is the same doctor who took away my Midrin because he thought it might lead to a stroke. (vasoconstrictor) That pissed me off. Midrin is the only medication that restores my vision and immediately aborts my migraines. Best stuff ever. Not happy at all with this guy. But I smile. I talk calmly. I watch what I say. But, I don’t trust him.

    I’ve had way too many bad experiences in my life with doctors. I’ve had a handful of good ones but they’re all gone now. Private insurance follows the rules of Medicare/medicaid now. The feds call the shots now. Triage Jiffy lube basic medicine.

    The reality is, we’re too complicated and more importantly, we’re too expensive to treat effectively.

    That’s the harsh reality of it. Just single payer basic insurance that doesn’t help folks

    outside the bell curve. I’m outside the bell curve.

    Well that was a rant. Sorry about that.

  • mkwhitt
    11 months ago

    MidrinMan, yes it absolutely is gaslighting! They use their “Nurse Ratched” technique on you – a coldly, professional exterior with a plastic half-smile, and the sing-songy voice of a demented kindergarten teacher. No wonder you are ranting. I am too. When I’m obviously drowning, and begging for help, I don’t need the lifeguards throwing anchors and rocks at me, and then telling me to calm down, or maybe it’s in my head. This is what we’re dealing with. I read your posts twice, and identified with so much of what you said. Thank God your wife is in the medical profession, so you have a little insight into how to handle things, maybe. I wish you the best in this fight.

  • mkwhitt
    12 months ago

    Thank you for your story! I have such severe PTSD because of abusive doctors, reading about your experiences made me cry. I’ve suffered from migraines for 45 yrs, and used to have debilitating menstrual cramps every month. Probably fifteen or so yrs ago, my usual family dr was out, of the office, so I saw another dr in the practice – I told him I needed a refill on my migraine med and the pain med for my cramps (btw, I only took a couple pain pills a month). So he started YELLING at me about how drugs aren’t the answer to everything, then I started sobbing, and then he started TAUNTING me and calling me a baby. Left that practice entirely.
    Another time, I tried a new neurologist, because none had helped me so far. This jerk walks into the room to meet me, immediately wants to know WHY I would change drs (you are so right – plumbers never ask this!). I said it was because they weren’t helping. Again, I got yelled at, and he called me a liar. I started sobbing, again, he yelled at me for that, and told me to leave. I sat in my car for a while, crying almost hysterically. None of this is typical behavior for me – it is the result of being broken by decades of chronic pain, and then being bullied and abused by those who are supposed to be helping. I haven’t even gone into the emergency room visits.

  • bluebird
    12 months ago

    Shopping for care is important. Shopping for opiods is a problem. I was wondering how many of us ask we can can record the consult (so that we can recall it’s details better)?
    Better still video the time in the office. Kind of like body cams on cops. Let’s tell the truth about our experiences in a way that validates it! I always bring someone knowledable with me but that is not always possible for most of us. In this video age, lets get consults on our personal file so that we can…as women and as patients….be believed and respected in the morning.

  • Elizabeth Roberts-Zibbel moderator author
    9 months ago

    bluebird, I love this. I wish there were a better way to handle the opioids ending up on the streets, the ones being manufactured with dangerous additives and sold to desperate people. I understand there is an opioid problem but I and other pain patients are NOT the problem. All doctors seem to be on guard now in case a new patient is an addict doctor shopping for the purpose of obtaining pain meds they don’t actually need. I would say that we don’t doctor “shop,” we do thorough investigating regarding whether a medical professional will be able to meet our various physical and emotional needs.

  • bluebird
    12 months ago

    I want to thank the author for her careful choice of words. I am saddenned to read all the comments about how arrogance, ignorance and patriarchal power relations have contributed to so many feeling hurt, misunderstood and rejected in medical consultations.
    I have had the good fortune to have had consults with caring and motivated, informed physicians who were as frustrated as I with their inability to help my improve my condition.
    Once I had a consultation with a male neurologist who was confined to a wheelchair. I assumed he would be understanding of a chronic condition. Instead, I was reduced to tears and felt more ashamed and helpless and hopeless than before. He was known to be offputting by his colleagues but I didn’t know this until after I had the visit. Another expert was more interested in the possibility that I would be a good research patient if my unusual migraines qualified for his research protocols of the moment. He refused to send copies of his eval comments to my local headache specialist…a colleague he did not respect I guess….so a very expensive trip and consultation brought me no more info than before. However, most of the headache specialists I have had the good fortune to find are now retired or dead. I feel like I have tried everything, I avoid opiods and reduce RX as much as tolerated and soldier on. I have PTSD from side effects of well intentioned treatments and chronic disappointment after allowing myself to feel hopeful about relief. I do not have as much “pain” as others but I have difficulty with thinking, word finding, facial droop and other dysfunctions nearly every day. I am old and not likely to see much change so I make the most of the good hours and accept as much as possible all my limitations. It is exhausting. I am grateful for a partner who cares.

  • Elizabeth Roberts-Zibbel moderator author
    9 months ago

    And, thank you for thanking me 🙂
    so glad you have an excellent partner. I do as well.
    ~elizabeth

  • TNmigGal
    12 months ago

    One thing I think we need to remember – “doctor shopping” is bad / illegal when you are trying to obtain a controlled substance from multiple doctors without letting each doctor know about the other prescriptions (usually due to addiction problems). We need to empower ourselves and stop being ashamed to look for a doctor that fits our needs – physical, mental, personality, communication, etc. We owe it to ourselves to find the best care available or we, in the end, waste both our, the insurances’, and the medical professionals’ resources. I think we should be able to turn it around on the doctor and think of it as interviewing them to see if WE will be bringing our business to them, the same way we decide what grocery store, drug store, etc. we go to.

  • Elizabeth Roberts-Zibbel moderator author
    9 months ago

    TNmigGal, Yes, absolutely. In Ohio restrictions on opioids were just made even stricter, but even years ago there was a database where each doctor can look a patient up to make sure they aren’t getting multiple prescriptions from multiple doctors. So when I go into the ER, they can pull up on the computer that I have legitimate scripts for one pain med and one anti-anxiety med, both from the same local pain management specialist. You’d think that would help them to be more trustful, but somehow, it doesn’t. I agree about turning it around on the doctor! Thank you for (very belatedly) for your comment!
    ~elizabeth

  • 1utxmug
    12 months ago

    I have had the same experience with my neurologist. I prefer to see her physicians assistant because she is much more understanding and listens to my concerns. She actually does research and verifies things. My neurologist knows everything and won’t help me until I see a psychiatrist which I continue to refuse. My primary care doctor is lovely and has finally suggested that I go see a new numerologist that she recommended. I will be seeing her for the first time on Jan 3, 2018. I hope I get a warm feeling from her and not the typical cold neurologist shoulder. All I want is to get to the bottom of my problem and feel like everyone else. I don’t think that is a lot to ask! I also want to comment on the article itself. I really don’t think seeing other doctors is a bad thing and should be frowned upon. We all have different personalities and when we need help with a disease such as ours we need someone that WE feel has compassion and until you find that doctor you should keep looking. To heck with the image.

  • Elizabeth Roberts-Zibbel moderator author
    9 months ago

    Oh! I hope your email will alert you that I finally responded and you can maybe let us know how the appt on January 3 went! I am going to see a new neurologist in July, in Chicago. She’s only “new” in that she is different from the most recent two I’ve seen over the last twenty years. I did see her closer to home and LOVED her but then she left. We recently discovered she has a practice that is only 4.5 hours away, which is more than worth it to me! I so hope your appt went well!
    Take care,
    elizabeth

  • tlocker
    12 months ago

    Finally in my 40’s, I have both a decent neurologist (for FMLA and botox) and amazingly wonderful PCP. I manage to avoid multiple humiliating and usually useless ER visits because of her trust and common sense with prescriptions. We have 12 years together, and I feel SO blessed after all my previous experiences were like yours…but now I have a horrible anxiety that she’ll retire before the new meds I’m praying will work are released. You might join a FB book group or ask Migraine Buddies or similar if anyone in your area has had good outcomes with any area providers. So sorry, I remember that hopeless feeling, but just keep trying…and don’t let THEM define who YOU are. You deserve better.

  • Elizabeth Roberts-Zibbel moderator author
    9 months ago

    Thank you so much! I did actually find this PCP by asking people with chronic illness. The second appointment was much better and I now have an appointment set with a new neurologist! I understand the fear of your wonderful doctor retiring. I have the same fear about my pain management specialist.
    Take care!
    elizabeth

  • parmes
    12 months ago

    I’m sorry, I just had to come back and post again as my own anxiety climbs. I’m due to see my own PCP that I mentioned in an earlier comment again on the 3rd and I’m really not looking forward to it.
    I just don’t understand why they act like they don’t care. I mean… Why become a medical professional if you’re not there to help people? Am I missing something here? Do they really get paid enough to balance out the debt they’ve put themselves in with student loans and such?
    Why can I find amazing, easy-to-understand information about my disease like this site, yet I have to explain the difference between migraines and headaches to every person I seek care from? It really feels like we’re swept under the rug.

  • Elizabeth Roberts-Zibbel moderator author
    9 months ago

    parmes, how did your appt go? Swept under the rug? Absolutely. I’m so glad you find our site so useful! And I always appreciate your comments.
    All the best,
    elizabeth

  • Holly H.
    12 months ago

    Oh, my, as a migraine lifer and, gasp, an older woman, I could fill this page. Here’s two recent ones in the last year:
    I had an ENT and his male nurse laugh at me when I said I got severe nosebleeds when the brain stem migraine is at its worse with swelling at the base of my skull at the neck, even though I said this was the only time these nosebleeds happen.
    And then, after going on disability because I couldn’t get a job after massage layoffs at the previous job because of my age and migraine events that needed recovery time, this year a doctor told me to get a job and that would help me. I looked him straight in the eye and told him that I’ll switch health conditions with him for 3 days, and would guarantee that he would come crying to me to take it back. *Sigh*

  • Newdancerco
    10 months ago

    How long did it take to get disability?

  • Anne
    12 months ago

    I am so sorry. I do relate – i’ve had to continually fight to get good care because so many doctors are unknowledgeable about migraine. You can report the doctor – I have for the doctor who told me I should start a family to get less migraines. I have a great neurologist now, but I also live in a city with a lot of choices and it took a long time to find him. Can you take a friend with you to your next doctor appointment? Moral support can be super helpful to me, as can someone to stick up for me when I am exhausted from fighting migraine.

  • Elizabeth Roberts-Zibbel moderator author
    9 months ago

    Anne, I took my mom the next time! It helped a lot. And I found a new neurologist (whom I have seen before, as a much younger adult before she moved away) in Chicago and am hoping for the best.
    Take care!
    elizabeth

  • texotexere
    12 months ago

    I’ve had similar experiences with several doctors. It sucks. I have the “luck” of not handling medication very well and I always refuse narcotics if possible, so I don’t usually get accused of drug seeking. Add in that one type of migraine for me has no head pain, just 4+ days of vertigo and vomiting, and trying to get people to believe that it isn’t psychological or you are faking is nearly impossible until they see a bad episode in person. Then they wonder why I am not hospitalized every time. Unfortunately, the only sure fire way I’ve found to be believed is to go in during an episode and throw up all over their office.

  • waclements7
    12 months ago

    I had a very similar problem. For a brief period of time, we had a headache specialist, which was wonderful. He did pain blocks and was very compassionate. He left due to a family situation and the neurology department didn’t replace him. They had one neurologist who listed an interest in migraines so I made an appointment with him. I keep a chart of all my migraines because I have a bad memory. He asked me about how many migraines I had a week, and I showed him the charts. He said, “I don’t want to see that, I want you to tell me.” I knew the rest of the visit was going to be a waste. He didn’t believe my migraines were hormonal and told me he didn’t do nerve blocks. He said he had migraines, but he just needed Exedrin Migraine and he was fine. He wouldn’t listen to anything I said and lectured me about MSG being the cause of all migraines, and that I slept too much (I also have depression and an anxiety disorder, as well as the 7-13 migraines per month). He was condescending and rude. All he did was tell me to buy some books and about his migraines, which must be the same as mine. This cost over $400, as well as the books (I was able to get most of them used, and one was by Oliver Sacks, which was interesting, since he talks about respecting the patient). I haven’t gone back and at the moment don’t have a neurologist. There are no other headache specialists here. I talked to my psychiatrist and she mentioned a lot of male doctors (especially specialists) treat women that way. It stinks. I think because it’s such a complicated issue, when they don’t know what to do they default to being judgmental and cold in self defense, because they don’t want to look stupid. I might be totally wrong about that. But migraines are so different for each person, and women have hormones thrown in as well, they can’t possibly know everything, and instead of trying to find out and showing some vulnerability themselves, I think they end up being rude. Or maybe they’re just rude. I don’t really know what my point is now, but I’m frustrated too, and I’m afraid of being treated like that again, so I understand and empathize with how you felt.

  • Elizabeth Roberts-Zibbel moderator author
    12 months ago

    I want to thank all three of you for taking the time to comment and share your own similar experiences. I am having a really tough time right now and this support means the world. Thanks so much for being here, and please take care. I wish we could all get the medical professionals we deserve! ~elizabeth

  • Deb
    12 months ago

    I can certainly relate. I had a PCP who was happy to treat easy cases, like people with colds or needing flu shots. She ran a “production line offfice.” More than once she berated me in front of her student doctors. Another I went to that behaved inappropriately was an ENT who on the first visit entered the room and said, “Well, you do not have the disease you say has been diagnosed, and I can prove it.” I agreed to undergo significant tests which he said would be proof positive. When the results indicated I did have the disease, he refused to give me the results. I had to get my own copies from the doctors who conducted the tests, and the diagnosis was clearly indicated. Now I am happy to report I finally have a team of doctors who are very knowledgeable in their fields and are compassionate.

    I am sorry about the horrible experiences you have suffered at the hands of supposed medical professionals. Seems the really good ones are few and far between these days. They are out there, but finding them, especially with insurance constraints, can be very difficult. I wish you all the best!

  • GardensatNight
    1 year ago

    I am so sorry that happened to you.

    I have now decided there is literally no more important quality I look for in a doctor than compassion. I want someone who will treat me like a human. It seems to be hit or miss. I have been told by my doctor “I don’t believe in disabilities. They disable people.” (Well, lovely for you, since you’re lucky enough to be healthy.) I have described my physical migraine symptoms to doctors and gotten the medical report back to read that they listed every one of them as a psychiatric problem.

    I wonder if your doctors just did not want to take on your case, because they prefer “easier” cases, and that’s why they were jerks. That has been my experience, the sicker I got. When I was healthy, I never had problems finding a doctor. Now that I am super sick, I have tried to get in to see new doctors who refused to treat me because I am such a migraine oddity. One erased evidence of our visit, said we had been a no-show, and then got flustered when we tried to make a second appointment and produced the receipt. Another told me they would only treat me if I watched a 2 hour informational video on migraine. When I explained I couldn’t watch movies or expose my eyes to man-made light (they had windows, so the office visit wasn’t the issue), they refused to treat me… I asked what they did for blind patients, as I was very willing to keep my eyes covered and listen to the presentation, and their response was, “We don’t have blind patients.” Lovely people.

    I would never wish my condition on anyone, and I know you wouldn’t either. But sometimes I wish all the doo-doo heads in the world would have to live with it for just one week, because I bet if they did, they would change their tune pretty quickly and be a little bit nicer.

  • parmes
    1 year ago

    This is extremely real and a very frightening feeling. When you go into a doctor’s office it’s because you don’t know how to handle something yourself and that alone is scary enough. Then being treated like a child, or like someone who is trying to “cheat the system” in some way… It just hurts, you know?
    I had pretty much this same experience, only my perfect doctor was my pediatrician and I was (obviously) forced to find someone new. I went through a clinic for a while, no insurance. Then found a job with good insurance, found a PCP. This guy was a piece of work though. He treated me like s*** every visit, cut me off of my HRT without talking to me, and didn’t believe half of what I told him or something because it felt like I was always repeating myself, stuff was never written down. I went to the ER for a bad seizure episode and found a different Dr. too because the meds he gave me caused them.
    Then I go to the new PCP and have to sit through a 3 hour appointment because of course that last guy took way better notes than the clinic, and I guess I look insane or something. She literally berates me to tears 4 times in 3 hours, and we didn’t even talk about what I wanted to talk about. Doesn’t believe anything that’s coming out of my mouth because from the time I left my house to the end of the appointment, I’ve gone from pain level 2 to 9. My words and vision are blurring. I wouldn’t believe me either.
    I hate any situation where someone has power over me. Especially when I’m in pain.

  • ddnben
    12 months ago

    I am very blessed that I have an understanding PCM and super neurologist right now. But I have experienced the same thing before and suffered for years in silence. I know that we all downplay our symptoms just to try to get some relief but they eventually become to big to ignore. Hang in there! Praying you find a better, and sympathetic, doctor.

  • AquaSue
    12 months ago

    I am so sorry to hear that happened to you. Having a doctor that doesn’t understand the disease is a huge reason people do not get the right treatment and live with their pain. I have been fortunate to have a supportive doctor who actually talks to me and not about me. I did have one experience with a doctor around knee surgery that I had. He actually accused me of lying about the type of surgery I had among other things. I was so angry and hurt. I did stand up to him though and spoke about how he has not right to treat a human that way and I refused his treatment. I also refused to pay for him basically not helping and berating me and threaten malpractice. Fortunately, they did not press the situation. Then next time I went to a doctor, I felt the same as you, so nervous and upset and just depressed. I brought along a person for support and it helped me through it. Even though I am a complete stranger, I send my support. And I hope it helps.. Stand up for yourself. I tell myself, they are there to complete a service, they work for you. Not the other way around, like the plumber, and if they do a poor job, then they don’t deserve your patronage. Be strong. We have your back.

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