Sleepless nights, confusion on "diagnosis"?
Last updated: May 2023
Okay, so I don't know if anyone will read this, but I suppose it's good to vent for my own well-being. I'm a 24 year old female. I've had chronic migraines for a few years now, but migraines on and off since I was about 13 or so. I have a run of the mill headache just about every day. No one understands that I'm not exaggerating. I got some fire under my feet when I was about to be fired for missing too much work (either having to leave from vomiting and blacking out migraines, or calling out sick).
So first step, tell my primary care, who is a sweet doctor but just seems a little clueless. She tells me it could be my birth control, so I should try a different kind-progestrone only. Although this is a very "strict" kind in my sense. I have to take the pill at the same exact time every day-or else! I work 13 hr shifts in a hospital where I can NOT leave.
Needless to say, I was sexual inactive for those few months since I forgot so many times! Also, no change in migraines. So then I'm told to go off birth control completely! I try it. Not that sex is the only thing in life, but it sure is enjoyable... condoms it is.
In the meantime, I make several trips to the walk-in clinic for those excruciating migraines. Nothing seems to help, but narcotics and phenergren. Knocks me out, lovely. Along the way, I actually have a migraine during office hours of the doctor, but alas, my doc is not available. I opt for the new doc to the office, who truly takes an interest in my migraines. He asks many questions I've never been asked before and honestly seems concerned.
I'm asked about my diet, my routine, if I've had an MRI, when the migraines come, etc. I'm told to write down everything I ate when I get a migraine, everything I've done that day, and how severe my migraines are. Also-a new diet. No cheese, chocolate, alcohol, MSG (who actually eats that anyway?) or caffeine. Ah caffeine, my best friend. I work nights-did I mention that? 6:30 pm to 7:30 am. Oh mountain dew, farewell!
I found that perhaps some of the foods were in fact triggers, because I slipped up with the processed foods a bit. But still, migraines continue. I am sent to a neurologist, which takes MONTHS for an appointment. I go, and the neurologist takes me to her office and asks me to explain my "headaches" and tells me I have common migraines, just take excedrin or ibuprofen. I stop her and say no, that does not work, is there not anything else that could possibly help?? I tell her about what I've read online. I read about Topamax and daily use at the right dose could help many migraine sufferers. She tells me if I really want to, I can try it. pshhh
Anyway, I start the Topamax. What hellish side effects. I can't feel my feet! I wake up with no feeling in my fingers and toes. headaches continue...but migraines lessen? I go to my follow-up appointment with the non-interested neurologist. I scheduled for 8:15 am-earliest possible appointment. I go after working all night with heavy eyelids and wait. I'm taken back to the exam room and get the vitals taken and wait. A nurse comes back and says "Oh not much longer nicole! Do you want a soda or something while you wait?" I say no (given up on those!) and then I look down at my phone to see why she was checking back up again...it's after 10!!! I fell asleep in the room and yet no doctor yet? I poke my head out and ask when the doctor might be there, I haven't slept in 24 hours and have to work again in about 8. They reply "she just called, she's on her way". WHAT?? the doctor isn't even there. I storm out. F that.
Back to square one? I talk to my doc again-the one who actually took interest. He upped the Topamax and suggested an anti-anxiety med as well. More meds. I think? whatever helps. Meanwhile, My boyfriend and I have a 16 month old baby girl with mental delays and behavioral issues dropped in our laps. We get custody of his niece which is the most stressful experience of my life. I watch her all day, taking her to doctor's appointments once a week for weight checks (she was severally malnourished as well) once a week behavioral therapy class, and once a week speech therapy class. Not to mention social services visiting our apartment, and family on our backs. The migraines became severe at this point-but I had no time for myself. We both had to work overtime, my boyfriend trying to finish school and all the social service appointments to make.
After baby girl went back to her felon drug addicted mother and soon to be out of prison felon father (neither of whom had jobs, cars, licenses, or a place to live) I fell apart. This little girl was my life for 7 months. Her mother did nothing but cause trouble while I took care of her, taught her everything and here baby girl was being handed back with perks! They were allowed food stamps back (she had sold them previously! I couldn't get them!) They were given FREE FULL TIME childcare! I couldn't get approved for childcare! Neither one even had a job! After then, migraines got worse.
After a new symptom, (excruciating neck pain with my pounding headache and vomiting), my doctor schedules an MRI. I'm excited, only because maybe this holds an answer! I get the MRI (not a fun experience, and quite cold as well). I had gone early in the morning, and then head to bed (since I had worked all night). At 6:30 pm the primary care doc calls, I miss it. The nurse says "nicole, we got your MRI results, and them mumbles something about benign possible questionable..." WHAT?!?!!? I call back in a panic, but get voicemail (after hours-duh!) and call my mom. The nurse calls back and says it was a "venous menenginoma in right frontal something and another questionable mass". This scares the crap out of me.
I head to a new neurologist. I hand her my MRI disc and she says she doesn't need to see it, she doesn't know how to read them anyway. WHAT? a neurologist that can't read an MRI?? She tells me it's nothing. I shouldn't have gotten it done, it just comes up with things. She tells me she is going to start me on Topamax. I say - I've been on that, it hasn't worked (did she even read my file?) "Oh, okay, we'll up your dose". I roll my eyes and say fine. But what about when I get a migraine? She says oh, just take excedrin. If that worked, would I be sitting there??? So she prescribes another med for the pain. I ask what's in it and why it might work better. She seems confused and starts looking it up in the computer. Whatever.
I call in my prescriptions to be filled so I can pick them up when I get off work in the morning. When I call that morning to check to see if they're ready, I'm informed that the med she prescribed for the pain-taken off the market because it was deemed unsafe for use. wow. Just what I need. I already had no faith in her. I call and tell her nurse who informs me the doc said to take ibuprofen instead. Gee, thanks.
At this point, I've given up. Honestly. I've already separated myself from friends and family so far away that my only partner in crime is my boyfriend. I decide to get off all the meds. I can't spend my whole life on these meds, they don't help anyway. I'm sure they're all unsafe for pregnancy, and I do want to have a family eventually.
I suppose my story finally ends here. It was long and too wordy I'm sure. But here I am, awake at 3 30 am because this major headache hasn't tapered off in a week. Sure the Excedrin helps slightly-makes sure it doesn't turn into a full blown blowing chunks curled up in the fetal position with pillows over my head and my boyfriend rubbing my back migraine. So i scour the internet for answers while I have no health coverage anymore. I'm hoping that moving away from the stressful family dynamics and the incredibly depressing job (oncology/hospice) will help. One can only hope.
In the past year, has insurance made it difficult to get your migraine treatment?