Does anyone have any ideas on how to make a point to your doctor or even just make them listen for that matter? It's just really frustrating when you feel like you know more than your doctor does. I have the same "migraine" for 8 months straight and am in constant pain. I have learned to cope some but my neurologist refuses to do testing because she said you don't want to know what's causing it you just want to cover the symptoms. I know I have no room to complain many of you have so much pain and I'm so sorry about that and I will be praying so much for all of you and wishing you all the best of luck with treatment. I have many signs of increased pressure and I just don't know what to do next. Does anyone have any similar experiences and how they were able to get their doctors to listen or understand?
Yes, I have been going through this too. It's terrible. I feel like no one wants to help. I have severe migraines too and I went to sever doctors (seriously) until I found one that helped with that but still no answers or help on my body pain. Last week I could hardly use the bathroom from the severe pain. I called the doctors office twice and was told a nurse would call me back and never did, I left them a secure portal message and nothing. I almost went to the ER but wasn't sure I could be in the waiting room that long! It is terrible you are going through this and I really wish you positive vibes that you get some help and someone to listen to you since you know your body best.
Migraines are a special brand of hell. All the regular complications are annoying enough, but the episodic blindness takes the cake. Unfortunately, each doctor has a different thing that will "break" them. There were some I never could form a working relationship with, and others that tried their best right out of the gate.
I tend to pull the information overload card and provide a fully detailed spreadsheet of history and symptomatic behavior on first appointments. This either goes really well, gets skimmed over, or in some cases, actually pisses them off; this sets the bar for our working relationship. This comes from a family history. My father had SLE mixed with a few types of arthritis, so I was always checking the medical and drug encyclopedias for what was going on between and just after his appointments. This "do your homework" mentality stayed with me, which is why i don't get along with a lot of doctors.
What finally broke my current primary's wall was my wife accompanied me to an appointment. It wasn't planned, just the way things lined up, but it worked. She provided an extra point of view, explaining how bad things looked from the outside at home when my migraines were at full blast, my leg was acting up, or any other items from my collection had me on the floor trying to be stubborn enough to get back up and get ready for work in the morning. After she explained that my appearance in the office was a stoic face of holding myself together and things really were that bad (or worse), primary stopped being bullheaded, ordered boatloads of tests and started referring me to specialists. Thankfully, they've all done their part since.
You're definitely not alone in having doctors disregard you, though. My greatest hits include a primary who said he could tell across the room there was nothing wrong with me, a gastroenterologist who said I had no idea where my kidneys were and only needed spiritual healing, and an ER doc who gave me a shot of morphine before discharging me "because the IV's still in" then noted in his report that I had a low pain threshold and exhibited drug seeking behavior.
Rambling aside, the gist is each doctor's different, and some are just too caught up in themselves to work with. If you simply cannot break through to this neurologist, you can ask your primary to refer you to another. Alternately, if your insurance doesn't require referral codes for specialists, you can investigate neurologists in your area, find the one that gets the best results based on reviews, and make your own appointment.
Visual data might help, however. If you haven't already, give the app Migraine Buddy a try. It's very granular in its details, and showing that to the neurologist would give a roadmap of migraine behavior for her to work with. If she's not interested in extra data, I'd certainly look elsewhere.
Damn. I rambled again. Hopefully you got something useful out of all that. Good luck.
I don't know. I would say I have been right maybe 60-65% of the time of the "ballpark problem" like when I was saying I had seizures (i knew not grand mal but some form, brain injury in side and front or back etc...)
But probably like you that's after really researching the hell out of it. Like I have all the symptoms of Lyime disease and asked for the testing. 2 doctors said the exact same thing that yes have the symtoms but presented in wrong order and one should be steadly increasing and it's not (which I didn't know) so was close but no cigar on that one. Lol
Overcomer I have gotten a lot of things correct like I had to ask for a MRI and blood work and they found a cyst and I've had so many great ideas but my doctor is stuck in her box and thinks it's only a migraine nothing else and she's not willing to do further testing because it's "not necessary"