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A couple of weeks ago, I wrote a post about the current storm of stress that is happening in my life.

My migraine started as a headache during a peak stress day(the day started with dropping my cat Rorschach at the vet’s for an endoscopy, then picking up a bridal shower present for a friend before boarding a train to ride up to New York City to have lunch with my girlfriend.) I definitely was aware of both a headache and blurry, unreliable vision when I was in Penn station after I got off my train.

It may or may not have started earlier than that, but I know that it was occurring at that time. This is important because the stresses only increased.

After a reassuring phone call from the vet(the endoscopy went well and indicated no severe physical problems), I met my girlfriend for lunch, where she promptly broke up with me with minimal explanation.

I had thought things were going well, and had been looking forward to planning a 1-year anniversary celebration later in the month, so I was in pretty severe shock at that event.

The stresses continued from there, mostly negative, but with some positive stresses interspersed(including a wonderful bridal shower and bachelorette party for a dear friend that Saturday.)

The headache continued, and I noticed more blurred vision(which I initially thought was an Functional Neurological Disorder symptom I’d previously had, where my eyes moved out of focus off and on for about a week).

I did my best to relax and enjoy myself but was a bit disturbed, not so much by the pain of the headache, but by the vision weirdness and the fact that the headache hadn’t gone away yet.

In the second week of the headache and blurred vision, I checked in with my neurologist.

Getting Help

He suggested that the blurred vision was likely part of the migraine and after some discussion, I agreed with his assessment.

We discussed my options and agreed that I’d try a new migraine treatment that he had prescribed me earlier thinking it might help, but I had never bothered to fill, as I hadn’t had a migraine in months.

In passing, he mentioned that there were a few additional options to try to break the migraine, including some IV treatments I would have to get in an emergency room.

He reissued the prescription, and between our conversation and when I finally got it(Al was out much of the day so I didn’t get the pill until the late evening), the pain level of the headache had jumped from about a 3 to a 7(on the 10 point numerical pain scale).

I also noticed that now, looking at screens, like my phone, was increasing the headache.

Fortunately, when I tried the new migraine medication, the headache subsided within a couple of hours back down to that 3/4 level, but I still had that screen sensitivity.

I gave it a few more days, partially due to fear of going to the emergency room, and partially because the pain level itself wasn’t so bad that I’d think it was something to go to the emergency room over.

That weekend, I crashed at a friend’s house in the city, and debated whether or not I should consider taking the next step in treatment.

When I got home Monday night, I decided that since I was now into my third week with this migraine, I really needed to investigate further.

left side holds a picture of Alison gazing levelly at the camera.  To the right, white text reads "Medical care decisions feel overwhelming?" and in smaller brown text "Click here to learn about my medical care coaching".  The far right of the banner holds the Thriving While Disabled logo

Things got serious

My neurologist called me back within hours of my Tuesday call, and suggested that we try a week-long steroid treatment which also could sometimes break migraines.

The treatment would end on Monday morning, so we agreed that if it didn’t work, I’d call him and we’d discuss options which would likely include the option of going to the ER.

The steroids didn’t help, so on Monday we discussed options, and where there were still a couple of non-hospital options I could try, going to the ER seemed to be the most reasonable next step.

We agreed that I would go to the ER at the hospital he worked at, as I would at least have him on my side so to speak, and there was a chance that maybe the ER staff might talk to him.

He warned me that he had no control over what the ER staff did or didn’t do, and that while he could try to advise or reassure, he could by no means guarantee that he could help protect me from any assumptions they might make about my FND symptoms or the treatment of the migraine.

Armed with this knowledge, Al and I reluctantly made our way to the ER, a 40-minute drive away.

Checking in and getting seen

After the drive, and the nightmare of finding parking in New Brunswick, Al and I made our way to the entrance to the ER.

It was a few blocks away because the hospital parking lot was full, but a bit of exercise was good.

My FND symptoms were pretty severe due to the combination of life stress, constant pain, anxiety about what lay ahead, and general ‘oh my god I’m willingly walking into an emergency room’, but I did my best to manage it, and mainly just limped a bit with occasional bouts of full-body trembling.

I squared my shoulders and limped over to the registration desk. Tremoring, and rocking, I stated to the man behind the desk: I am here because I have a migraine, it’s been constant for over 3 weeks.

He looked me over, took my information, gave me an ID bracelet to double-check and initial, then sent me to wait with a handful of stickers- so that everything related to me could be labeled with them, and they could confirm it by scanning my bracelet.

Al and I sat and waited. Knowing that screens weren’t a good idea and that keeping myself distracted was, I had brought a coloring book and gel pens with me and sat there quietly drawing to try to relax myself a bit. Here’s more advice on preparing for your emergency room trip.

Maybe 10 minutes later, probably less, I was called in by a triage nurse. I limped in, dragging a foot, and tremored my way over to a seat where I rocked violently back and forth.

“So, Alison what brings you here?”

I look at her as steadily as I can, and tell her that I have a migraine, have had it for weeks, and my neurologist had recommended I come into the ER for IV treatment.

Don’t worry about the movements – I have Functional Neurological Disorder, and the movements are a stress response.

They’re this bad because of the migraine I’ve been in constant pain for weeks. If we treat the migraine, these symptoms should calm down

“This is NORMAL for you?”

Given the amount of pain I’m in, yeah. Could we please focus on the migraine.

She takes my temperature and, after a few tries, my blood pressure(it was hard to hold still long enough with the cuff automatically inflating and deflating). Al did his usual and reassured her “don’t worry, as long as I’m not panicking, she’s okay”.

Looking nervous, she told us that we might have to wait 20 minutes or so, but there should be room for me after that, the department wasn’t that full.

When we returned to our seat in the waiting area, I noticed that a black man who had been waiting well before we arrived had vanished. “He hadn’t been seen by anybody yet” Al told me – “I heard him on the phone with somebody telling them he was still waiting.”

Finally, my name was called again – a wheelchair was sitting nearby and I quickly refused that offer, explaining that not only didn’t I need it, but I’d rather not risk hitting myself against the chair if I tried to ride it.

We made our way down and I was instructed to sit in the bed. There was a chair nearby for Al. The fluorescent lights were rather bright, and there was a computer monitor on the wall right next to me, on but apparently nonfunctional.

Eventually, a cheerful, blonde woman in dark scrubs popped in and listened to my explanation of the migraine, my neurologist’s suggestion, and what was happening.

As I talked, my hands shook and shuddered, so I again explained the FND and that the symptoms would calm down after a while.

She assured me that she had huge success in breaking migraines and cheerfully listed off several treatment options, reassuring me that I’d be headache-free when I left.

She asked if I’d be able to hold still for the IV and I assured her I could shift my movement so the nurse could work on me without impediment, and then she shifted her focus to my ability to stay still after that, and I reassured her that if I was coloring it wouldn’t be a problem, but that if that wasn’t an option, it might be reasonable to slip in a little something to help make sure I lay quietly.

That was the move that prevented me from protesting later when things went wrong.

left side holds a picture of Alison gazing levelly at the camera.  To the right, white text reads "Medical care decisions feel overwhelming?" and in smaller brown text "Click here to learn about my medical care coaching".  The far right of the banner holds the Thriving While Disabled logo

Actually being treated in the hospital: words of warning

So, once in an ER, you aren’t necessarily kept abreast of what is happening, and you aren’t necessarily being told the actual meaning of each step in the process or your treatment.

They’ll tell you things, but you won’t always know or have details explained, and generally ER doctors come off as relatively self-assured(aspiring for all-knowing/arrogant), and generally aren’t looking to be disagreed with, corrected, or otherwise gainsaid in any way.

In some ways, these are good traits. In an emergency(very common in an ER) you need a level-headed person who is able to quickly evaluate the situation make a call and carry through on it.

Hesitation can kill. Hesitation can make a difference between life or death, or a difference between minor damage and full recovery.

However, when you are atypical, unusual, or otherwise not what the doctor assumes you are, this can turn your experience into a nightmare.

My first big mistake: believing the doctor at the ER

In agreeing that a little something to help me stay still while being medicated, I surrendered my ability to competently rebut anything the doctor said.

She sounded so sure and listed off treatments my neurologist had mentioned to help break my migraine, she had seemed empathetic, agreeing that 4 weeks of migraine was a very good reason to go to an ER, and she had told me that she had a 100% success rate in breaking headaches. Yep, that’s a case of medical gaslighting.

To be clear, that conversation was close to two weeks ago, and I STILL HAVE THE MIGRAINE.

Now, I did not go untreated. Every time I talked to anybody at the hospital, I mentioned FND, my neurologist instructing me to go, and his name. When I talked to this doctor, I suggested that she call him as well.

A short while later, a nurse came in with an IV and medication to go with it.

I let him pick where to insert it, and he inserted it skillfully into my right arm at the elbow. As he prepped, I carefully did the little jiggles of my left arm to make sure my right arm stayed still.

With a minimum of pain, fuss, or bother, the IV was in and solidly taped on. He hung the first bag of fluid, added a little something to ‘help me relax’.

I spent the next several hours slumped backward, in a still relatively bright room, but at least with the fluorescent lights off, the soft glow of the computer screen I couldn’t look at on the side, and Al quietly paying on his phone beside me.

left side holds a picture of Alison gazing levelly at the camera.  To the right, white text reads "Medical care decisions feel overwhelming?" and in smaller brown text "Click here to learn about my medical care coaching".  The far right of the banner holds the Thriving While Disabled logo

Getting treated, and embarrassed

After some time, the nurse returned with a new bag, and warning that it would make my crotch burn “but in a good way”(it was a strange experience), and adding in another treatment as well.

I faded out again, then was groggily aware that they were helping me transfer into a wheelchair for the CT they had mentioned.

I was too sedated to twitch and vaguely noticed my headache wasn’t as bad as it had been. I muzzily watched the world wheel by, then sat in the chair behind one hospital bed with a woman in it and with another bed behind me.

Time passed, I guess, and then I was wheeled over and the technician transferred me to lie down for the scan.

I almost twitched a bit then, but was able to shake my foot a little instead, then hold still when instructed.

Vaguely proud of myself, I foggily returned to my wheelchair and was steered to the “treatment area”.

Al was waiting for me there, and the nurse suggested I should give him the urine sample he’d been waiting for, so I teetered my way to the bathroom, did my business, and eventually found my way back to my seat.

I think he might have given me another treatment, but maybe not. What I do know was that I was holding my urine sample and the next thing I knew, my leg was wet.

Apparently, I’d had so little muscular control and was so close to unconscious that during what I think was only a few minutes, I lost my grip on the cup.

The wet blanket was removed, paper towels were applied to my leg, and I think somebody asked me how I was feeling.

I said “the headache is less” or maybe “it is a 1 now”, and the next thing I knew, I had discharge papers and a prescription in my hand.

“but my headache isn’t gone” I said.

Al helped me stagger out the door. I couldn’t think well, so he handled paying for parking, and then got us up to the car.

We made it to the car, climbed in, and realized that my pharmacy would be closed before we got home. We hit a CVS(the major pharmacy that works with my insurance), picked up the medication (which turned out to be valium), got our first real meal of the day at a diner, and stumbled home to take care of the cats.

I took a valium, passed out, and woke up in the morning with my headache back up to a 2.

Looking at my phone took it right back up to where it had been before I’d gone to the hospital, and after another valium and a grumbling acceptance that enough hadn’t been done, I called my neurologist’s office in the late afternoon to discuss next steps.

left side holds a picture of Alison gazing levelly at the camera.  To the right, white text reads "Medical care decisions feel overwhelming?" and in smaller brown text "Click here to learn about my medical care coaching".  The far right of the banner holds the Thriving While Disabled logo

Deciding to go back, a fury-driven decision

The next morning, I got dressed, put on sunglasses to protect my eyes from the glare and went for a walk.

My headache was back up around a 3 or so, I was waiting to hear back from my neurologist, and I decided that I was going to take care of myself the best I could.

I’d spent time between naps meditating on Tuesday and knew that generally walks in nature helped me feel better.

I was desperately frustrated that the idea of working on any of my blog work was instant pain but resolved to do my best to make the most of it.

With that firmly in mind, I focused on enjoying the shady walk and hoping the sunny parts wouldn’t hurt too badly.

My neurologist called me back.

“So how’d it go?”

I told him.

“Oh” he said. “And she’d sounded good when I talked to her earlier.”

“what do you mean?”

“Oh, I told her that if the headache wasn’t gone, she was supposed to send you up to neuro. I didn’t want you to leave until the migraine was broken.”

My opinion of the hospital plummetted, and my nagging disappointment in his agreement to my discharge was gone, since that hadn’t been what happened.

“Okay, so now what?”

He hesitated. “Well, it sounds like they were on the right track, they just stopped too soon. there’s a couple of medications I could prescribe, but they’d each take a few days to see if they’d work…” he listed a couple of options:

  • a new tryptan that might help, but he wasn’t sure how well my insurance would cover it, or
  • an older medication similar to the IV meds and much stronger than a regular NSAID that had gastrointestinal discomfort as such a common side effect. He would want me taking Nexium before I started it and maintaining about double the normal dose until I finished.
  • The third option was to go back to the hospital and try again.

I wasn’t sure if Al or I were up to trying the hospital again, but neither of the other options sounded appealing either, so after some discussion he and I agreed that he’d call in the prescription for the medication we knew my insurance wouldn’t balk at, and once I returned from my walk, Al and I could decide if we were up for a second hospital trip, or could start the pain meds and decide to go to the hospital another day if the pills weren’t doing it.

Al and I discussed our options and ended up deciding that we would give the ER one more try.

Battle of wills in the emergency room(more than a pyrrhic victory…barely)

After the 45 minute drive, parking at a similarly distant parking structure on the other side of the hospital, and my staggering and limping several blocks to return to the ER, I limped up to a different employee, gave my ID, and informed them that I was at the ER AGAIN for the SAME migraine because I hadn’t been appropriately treated.

I stuck my out my wrist for the band, and didn’t even think to double-check it until after it had been wrapped around my wrist.

We were barely seated when my name was called.

I limped in, sat down, and explained the situation. Honestly, it might have been the same person doing the check.

After she took my temperature, I was quickly escorted to the same waiting area, told to be seated in a similar bed, again with lights glaring and a computer screen that didn’t work beside me.

I did my best not to look at the screen. I pulled out the coloring book to try to help myself stay calm.

left side holds a picture of Alison gazing levelly at the camera.  To the right, white text reads "Medical care decisions feel overwhelming?" and in smaller brown text "Click here to learn about my medical care coaching".  The far right of the banner holds the Thriving While Disabled logo

Standing up for myself, or being unpleasant?

A new doctor walked in, a man this time, and asked me what was happening and if I knew why I had a fever.

This was a bit of a surprise. I explained that I had come due to the migraine, but that I knew in the past my body temperature would fluctuate a little if I was really stressed or symptomatic, but otherwise I had no idea.

I explained that I’d been in on Monday, and had been treated, but they didn’t use enough meds or for long enough, and my neurologist had specifically told the doctor to send me to Neurology if the headache wasn’t gone, and she had ignored that.

I wanted my migraine and headache broken and I wasn’t going to leave until they completed the process.

He was a little taken aback, but accepted my statement and sent in a nurse to prepare me for an IV. The first thing the nurse did was bring in a container for a urine sample, and I told him I’d take care of that before we did anything else.

I didn’t want a repeat of last trip.

For me, inserting a needle or any form of painful and delicate touching(like an IV) requires me to know where it’ll happen and be able to move something else so that the area suddenly in pain doesn’t move.

He asked where I wanted the IV and I told him, as I tend to – wherever will be easiest for you.

I’m not going to tell him his job and I’ll deal with wherever it gets put – that’s better than extra pain or multiple attempts.

This guy decided to put it in the middle of my left forearm!

I still have a huge bruise from it. I managed the process though and then waited a bit more. I’m honestly not sure if anything was actually put in there at that time

A few minutes later a new person walked in. He actually wasn’t wearing a white coat, and introduced himself as the manager of the ER.

He wanted me to clarify what had happened and what was going on.

I explained to him that I’d come into the ER with a migraine and that the doctor had assured me she could break it, and then had sent me home with valium instead of contacting my neurologist and sending me to neurology as he had instructed when he had talked to her earlier in the day.

He explained to me that they don’t ‘send patients to neurology’ that’s not how the system works, and I evenly responded that he should discuss this with my neurologist.

I reminded him that I still had the migraine and that I would really appreciate it being treated since it hadn’t broken yet and I’d had it for four weeks.

After some sputtering and a bit of an evil glare, he walked back out, presumably to talk to neurology.

They turned off the lights in the room and I think gave me something, but nothing to make me sleepy, and Al and I quietly waited for a while.

left side holds a picture of Alison gazing levelly at the camera.  To the right, white text reads "Medical care decisions feel overwhelming?" and in smaller brown text "Click here to learn about my medical care coaching".  The far right of the banner holds the Thriving While Disabled logo

The calvary(neurology) arrives!

A little later, a new doctor came in and introduced himself. He was from neurology and had questions about my migraine. We had a relatively pleasant conversation about what it felt like, how long I’d had it, what treatments I’d tried, and other actually useful questions. He examined me, then stepped out.

A while later, he came in with a second neurologist, and she asked a few more questions, examined more, and told me that she’d seen Dr. Schneider talking with the headache specialist about a patient, and she suspected it was me.

Then she explained that the ER really couldn’t break headaches like this, a lot of the medications would take multiple days to take full effect.

I bit back the snarky – “that’s not what the doctor told me last time” because they were trying to help and they were the experts.

After some discussion, the three of us agreed that I’d get Depakote by IV today, which they hoped would help a bit, then send me home with naratriptan(an actual migraine medication), gave me dosage instructions and told me that if the headache wasn’t gone by Monday that I should call Dr. Schneider to discuss next steps.

The IV finally got used to give me the Depakote, and Al and I got moved to a waiting area for me to get my full dose before leaving the ER.

The first ER doctor I’d seen came by to check on my progress, and eventually, the depakote treatment was done.

The pain was down a little, but I suspected the screen sensitivity was still there.

A discharge that made sense

The discharge instructions included two different prescriptions, one for the naratriptan, and the other for a secondary medication that was older and slightly less likely to be effective as a backup plan in case the naratriptan turned out to cause an issue with my insurance.

Al and I limped out, and I wore his sunglasses for the walk back to the car and again he handled the payment for parking.

It was close to 7 PM and we were starving, but Al wanted to get out of New Brunswick first, so we did.

We hit the CVS near home to fill my prescription, and while the Naratriptan was over a dollar a pill since I was only getting 5 of them, I accepted the price.

We got sent to a second pharmacy because the first pharmacy didn’t actually have any in stock, but we did finally manage to pick up my new hope of healing, then made our way to a pizza shop that was literally down the street from us, and feasted.

After satiating our hunger, we limped out to the car and drove home, grateful that it was mere blocks away.

left side holds a picture of Alison gazing levelly at the camera.  To the right, white text reads "Medical care decisions feel overwhelming?" and in smaller brown text "Click here to learn about my medical care coaching".  The far right of the banner holds the Thriving While Disabled logo

Getting treatment: the saga continues

So I was taking the naratriptan until this Monday. It did help a bit, which allowed me to get last week’s post completed with only a few hours’ work.

I still had the headache, though, so on Monday, I called my neurologist to ask about the next steps as I took my last pill.

I ended up not hearing back from him that day, despite several calls, and in desperation, Al and I ran to the pharmacy and picked up the pain medication that Dr. Schneider had prescribed the week before.

My neurologist and I reconnected on Tuesday morning, and he agreed that that medication was a good next step.

He also hadn’t known I’d gone back to the ER on Wednesday, but let me know that the neuro who saw me was one he thought highly of and she was his second choice to see me.

His first choice, the headache expert, was who he wanted me to see now. He repeated that I should take the powerful pain medication and he’d see if he could get me in with the headache specialist.

About a half-hour later, I got a call from the neurology department. The headache specialist could see me the next day!

So, I saw him on Wednesday, and we decided that I had migraines with aura at intermittent intervals(I’d had auras as a child, but not currently).

It’s possible that my antidepressant has actually been helping to manage the headaches, but that’s not a certainty, and he recommended that I increase my daily intake of B2.

He’s good with the treatment I’m taking, but has already planned for the next step, in case it’s needed, so he’ll reach out to me on Monday to see if my headache is gone.

If it isn’t, I’ll apparently be getting nerve blocks from him, meaning another trip to New Brunswick, but no more emergency rooms for me!

Thank you so much for reading!

This post was originally written with my eyes closed, and I started it on Wednesday morning, the first day that looking at a screen wasn’t so painful.

I overdid it. Al helped me to get this finalized and out, so I’m feeling a lot of levels of gratitude for his support.

I hope this post finds you in better shape than I was then, and I hope that you feel inspired to better handle an emergency and emergency room trip through reading my experience!

left side holds a picture of Alison gazing levelly at the camera.  To the right, white text reads "Medical care decisions feel overwhelming?" and in smaller brown text "Click here to learn about my medical care coaching".  The far right of the banner holds the Thriving While Disabled logo

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  1. Wow, Alison. I’m so sorry to read about everything you went through, but I’m glad you stuck up for yourself. That’s ridiculous that they put you through so much when you were so clear up front and your neurologist had left explicit instructions. Infuriating. I hope your migraine is gone and it doesn’t come back. Take good care of yourself.

    1. Carrie – my headache specialist and I are finally making decent progress in treating my migraine – I’m now actually having some headache-free days, which has been amazing! That migraine lasted over a year though, starting mid-August and me finally getting some headache-free time about a year and a half later this past January. It’s now a regular visitor, but it’s such a relief to no longer be in constant pain!
      Thanks for your empathy – those two visits were pretty traumatic and inspired me to write a few posts specifically on Emergency Departments.

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