Migraine Inpatient Treatment; anyone else had it?

[R.Little]

I'm heading to the Jefferson headache clinic in Philadelphia tomorrow for an inpatient migraine treatment that may last anywhere from 3 to 7 days.

My CFS is relatively severe. I can't handle much light, and I can't handle much conversation. In specific, I have trouble handling questions. Even on a good day, when I'm just having a conversation with my boyfriend, if he asks too many questions in a row, I have to ask him to stop talking. And when it comes to talking to anyone other than my boyfriend, I get exhausted pretty quickly, even on a good day.

I just watched the intake video for my stay, where they explain what to expect. Sounds like there are going to be people checking in on me every few hours, with all sorts of different questions. Psychologists, nutritionists, physical therapists, nurses, nurse practitioners, attending physicians, graduate students, etc.

I'm starting to panic a little. I'm not sure how I will be able to cope. And when I get a CFS crash, and sometimes when I get a migraine for that matter, I often have trouble speaking. And questions become painful, like really physically painful. An arrow shot between the eyes type painful.

I've basically run out of any other options for treating my almost daily migraines, so this is the necessary next step. Daily migraines are not fun, and I am desperate to treat them. So I have to give it a shot.

My boyfriend basically wrote out a six-page technical manual about how to deal with me, haha. All the details about my crashes and my symptoms and what I can or can't handle. So we'll be providing them with lots of information up front. But I'm still pretty worried about the whole situation.

But I'm curious if anyone else has gone through this, and if anyone has tips on how to deal with so much activity.

 

[Wolfcub]

I admire you for taking the plunge and going for this. I hope you can find some help there.
As far as I've found out, migraine can be responsible for many symptoms very similar to ME/CFS.

I get auras, though no classic migraine headaches. But only had this since the beginning of what seems to be ME/CFS. There's a link. So I empathise definitely. It's a neurological issue, never just a bad headache.

How are you with written/typed words? It will look very strange to anyone healthy, to have to reply to voiced questions by writing the answers (on a i-Pad perhaps, or even just an ordinary notebook?) Especially as you are literally capable of speaking. But we hope the instructions written by your boyfriend will be noted, so at least they'll have your history, and may be able to get their heads around it.
If writing down replies causes you less stimulus, it might be workable?
Could you practise this with your boyfriend before going?

But nevertheless, it's the hospital environment which is high stimulus in itself. I know.

 

[R.Little]

Sometimes writing is better. Having a notebook nearby would probably be a good idea. Aphasia is also a migraine symptom, so hopefully they won't be entirely unfamiliar with it.

I guess the worst case scenario is that I have a really bad crash and simply can't continue to participate in my own care. In that case, I would just have to leave early. That would be pretty disappointing, but it wouldn't be the end of the world.

 

[Zebra]

My boyfriend basically wrote out a six-page technical manual about how to deal with me, haha. All the details about my crashes and my symptoms and what I can or can't handle. So we'll be providing them with lots of information up front. But I'm still pretty worried about the whole situation.

Hi, @R.Little

Writing a "handbook" for how to best interact with you is such a smart idea (and such a loving gesture)!

I think what you are doing to address your migraines is very impressive.

I was recently in the hospital myself (4 days/3 nights). It was an exhausting experience on many levels, but my reason for hospitalization was emergent, so I am hopeful that even though your days may be long and busy, perhaps at night you will be allowed to sleep for long stretches of time, without constant checking of vitals, administering meds, etc. You may wish to discuss and negotiate a night-time schedule with your night nurse.

Couple of ideas based on my recent experience:

*Whenever someone leaves your room (day or night) remind them to *completely* close the door on their way out. You'd be surprised how much noise comes from the hospital hallways, even at night! All that "background noise" can be very draining, especially if you need to reserve your mental energy for meaningful discussions about your migraines.

*In addition to working out a sleep/do not disturb schedule with the night nurse, bring several pairs of earplugs and an eye mask if you have one. The electronics in the hospital room are quite bright at night and make various hums and beeps.

*Close your eyes and rest, rest, rest between visits from medical professionals. My sister visited me in hospital, and she basically sat their quietly, silently lending her moral support. She understood that I had to save my strength for conversations with the neverending parade of residents, fellows, attendings, etc.

That's all I can think of for now. I wish you the very best luck with your upcoming stay. I hope it will yield an effective migraine treatment plan.

Z

 

[R.Little]

@Zebra good tips!

I wear earplugs 24/7 anyway, and I'm bringing my white noise machine. I'm super light sensitive, so I can't even leave the house without multiple blindfolds (!). Good thought about asking to fully close the door!