Has anyone on this forum been accused of Munchausen Syndrome or Munchausen by Proxy, if you care for a migraineur?
” Munchausen syndrome is a type of factitious disorder, or mental illness, in which a person repeatedly acts as if he or she has a physical or mental disorder when, in truth, he or she has caused the symptoms. People with factitious disorders act this way because of an inner need to be seen as ill or injured, not to achieve a concrete benefit, such as financial gain.” from Cleveland Clinic website.
By Proxy means you are making someone else sick, such as a child.
I have heard of this being a complaint brought against either a migraineur or a parent of one with the form of behavior being “withholding medicines, because if medicines were taken, the person would be better”.
Any experience with this or how to convince someone that the medicines don’t always make one better, so remaining with a chronic migraine that has some very debilitation episodes is the nature of the disease. Management is complicated and sometimes goes awry without anyone being to blame.
I personally haven’t had this experience, and I’m not finding anything on this website about it. That being said, I am sure it may happen from time to time as it can be hard to prove that the symptoms of migraine are real. I’m sorry if you or anyone else you know is experiencing this. I would advise anyone in this position to consider seeing a different doctor, as I would expect it to not be very productive to work with a doctor who thinks the illness is being faked.
Let us know if you would like any advice about finding a new doctor, or treatments for chronic migraine.
Thanks for the offer of help – but we have very good migraine docs.
It’s an Emergency Room doc that has made the accusation of me regarding my daughter, not her migraine specialists nor her primary. We showed up at the ER because her chronic daily migraine had been at a 10 for over 2 weeks and wouldn’t come down, no matter what we tried at home for rescue meds. She is under very sophisticated care by good migraine docs, but her migraine is incredibly refractory and very very debilitating.
Anyway, we went to the ER with a protocol from one of the specialists which included a description of my daughter’s prophylactic and rescue meds and the simple statement that despite best efforts, sometimes the headache just got so bad, a visit to the ER for a DHE treatment was needed and in the past had been a significant help in lowering the status migraine. Unfortunately, it wasn’t her first visit to the ER this year. It’s been a difficult year. The ER treated her according to the protocol and administered it both well and with some adaptation that was helpful and appropriate.
But sometime during out visit, unbeknownst to me, the ER doc decided he knew better and that I must be withholding meds from her because “no one has a chronic, multi-year headache that needs ER attention unless they aren’t taking their meds – the meds work.” That’s not a direct quote from the complaint, but damned close. And he never even talked to me while we were in the ER. He just filed the complaint.
I think her migraine specialists are more annoyed at the hubris of the ER doc than anything else. One of the specialists said that if adult migraineurs go to the ER a couple of times, the docs think they are drug seeking (but who would want DHE multiple times!). If a kid shows up, they think the parent is doing something wrong.
The entire episode is immensely annoying, hurtful and distracting.
I was wondering if anyone else ever had to deal with such…crap…before.
Thank you for sharing your story and it is heartbreaking to read how you and your daughter were viewed and reported by that ER doctor. You are obviously a very well-informed advocate and doing everything right. For example, I would always suggest to have the kind of documentation on hand that you brought to the ER. I guess from time to time we cannot avoid a bad medical experience.
“There are also of course a few ED physicians who simply want nothing to do with chronic pain or Migraine patients. There are annoying terms that have been coined by this kind of doctor which are sometimes even used in the presence of patients. GOMER (Get Out Of My ER), Frequent Flyer, Bounceback, Professional Patient, AALFD, MGM Syndrome, Drama Queen… well, you get it.
These doctors will often flat out refuse to give pain relieving medication to a Migraine patient no matter what you do or say. When I had one of these, he stood in my doorway (I was admitted), watched me agonize for a few hours, then turned to my husband and told him “Sometimes we just can’t give them what they want.” When we checked later, I was horrified to find my records were prominently marked DRUG SEEKER.
After that traumatizing experience, I decided it was time to look at how I approached these types of visits so I could minimize the chances I would ever be labeled this way again.”
Unfortunately it looks like you are not alone. I also have spoken with many patients who have had similar experiences.
Going forward, I wonder if there is a way to reconcile this information so it is not on her records or does not interfere with her future ability to receive helpful treatment. Perhaps with the specialist’s help you could file a complaint? Also, is there a venue in which she could get DHE treatment that is not at the hospital, if you continue to have a problem with that doctor? All food for thought but perhaps you are already working on these sorts of things, with her doctor.
Perhaps someone else will chime in with a similar experience. Sending you and your family love and I hope your daughter is doing better.