Nothing worked in the ER for my migraine. I was very dehydrated, so the fluids were good, but otherwise, all they gave me just made me high and dopey. When I was admitted, I was given steroids and xanax (about the only thing we hadn't done in the ER).
I had no idea that what I thought was going to be a 24 hour stay would turn into a week. I had scans, all clear (we did revisit a small cavernous hemangioma - a benign blood vessel tumor - that we've seen before, and it still appears just as harmless...we figure it's been there since birth, and still not worried about it). I had lots of meds. Eventually, we retried the demerol that didn't work in the ER (because it has worked for me in the past) and it did start to take the edge off. That was wonderful. Then I had a day of stomach pain. We thought that was in part due to constipation (along with steroids and my previous stomach issues), so I got more demerol and laxatives (I take miralax daily, but since I had skipped a couple days and been in bed for a couple days, it was time for a suppository). The next day, stomach was better, but headache was blaring again. I think that was the day we started to revisit the idea of trying an IV infusion of a drug called DHE (migraine sufferers have heard of this, it's not a common drug). It took until late in the day before we got the order for it because the doctor wanted to get it right (she wanted to consult with another neurologist and make sure that it didn't have any contraindications for my preexisting conditions). I got the anti-emetic ordered as a pre-rec (which made me a little agitated), then 30 minutes later I got the first dose of the drug (it was supposed to be a 1/2 mL dose, then 1mL an hour later, then another 1/2 and 1 mL in the morning). 30 minutes later I was vomiting and had diarrhea. Diarrhea I can deal with (though it did suck that the toilets were up high and my feet didn't reach the floor, makes the cramping worse when you're in an uncomfortable position). But vomiting....oh, I just can't. With the EDS, we've studied my gut pretty extensively (not actually in regards to EDS, but now I know that's where the issue lies) and I have very slow GI motility, spastic and sluggish esophagus, hiatus hernia, all things low in peristalsis. So I never vomit. Because my body has a hard enough time moving food down the right direction, much less forcefully sending it back the other direction. I haven't vomited in years. That was painful. And scary. I couldn't breath. Because the food that came up was not even close to digested (I had eaten over 4 hours previous)....it was barely more than chewed. And my body didn't forcefully expel it like it does for most people. It was slow. I really could not breathe. And I was very worried I was going to aspirate. I was so glad it stopped when it did.
Yeah, I'm dwelling a lot on vomiting, but I need to get this out of my mind because it scared me. It was painful and frightening and just.....a lot. Luckily, my nurse was cool with giving me my bedtime meds early (there were both xanax and klonopin in that cocktail) and I was eventually able to get some rest.
After that, I declined any new treatment. We had run the gamut. I decided that my body was fighting off so many medications that it was time to just let it run its course. So all I took were my PO routine meds, the ones I had been taking routinely, and declined anything extra for pain or nausea. Even though I still wasn't feeling 100%, I was finally able to go home, migraine still lingering (we think the steroids may have helped some), very weak and tired.
I went into the ER on Monday morning and went home on Saturday morning. That was a long week. But I have to say, I was well cared for. From the second I got there, everybody was remarkable. I've been in the ER there before (for tachycardia) and they're a great team no matter what's going on. And all of the staff of the floor I was on were just wonderful to me. My nurses were just fabulous and I couldn't have asked for better from them. And the techs support staff and everybody from the bottom to the top of the ladder were all so great to me. Everyone is important in a patient's care. I preach that every day, but it's much more meaningful after being a patient. Especially for a week.
And the doctors were incredible. My admitting physician was well enough. She came in to see me daily. But it was my neurologist who I absolutely loved. I had a consult sheet to call her, but with things that had been going on with my pup, I hadn't gotten around to it yet. But meeting her was remarkable. She was there the hour I was admitted. We went over my history and talked about EDS and fibromyalgia and possible course of treatment for the next day or so and she was back early in the morning. She had talked to a couple of my specialists and done research on EDS and fibromyalgia all in conjunction with migraines, the treatments I've tried and the treatments we were planning to try. She wanted to let me know that she didn't want to do anything that might complicate my conditions further. I was so impressed that she would do all of that, as busy as she was. This is one very dedicated doctor. Each day, whenever she had something to talk to me about (she came in every day, usually early), she gave me the regular info on whatever it was, as well as what she could deduce based on findings for EDS and fibro (because neither have been researched greatly with a lot of the treatments we were looking at). I was just blown away. And she was constantly consulting with other doctors to make sure she had all of my bases covered (she called the rheumatologist and GP and gastroenterologist all daily to make sure there was nothing that would be compromised in any of her or their treatments). My props go to her. I cannot thank her enough for what she did for me this week. My gastroenterologist was also wonderful. He was in to see me after my second day when my stomach problems started setting in (even though he had been on the phone with the neurologist a lot). He made sure that we were keeping my stomach protected and that I was preventing any further problems from arising (because one problem I had was constipation from skipping my miralax too many days...I don't take it every day, and usually not even a full dose), so he wanted to make sure that I was staying ahead of the game, that I was covered for nausea and pain control if I needed it (I had been laying off the miralax lately because I was having IBS related cramping...very uncomfortable). Just the fact that he was in to see me and address any concerns I had was very comforting.
I plan to send cards to my doctors and to the floor I was on for all the nursing staff. I work in that hospital, just down the hall from where I stayed, but I have a very different perspective now that I've been through that. And I am so very grateful for the wonderful people that are employed there. I think I wouldn't have been as well off if it hadn't been for them.
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All that said, we still didn't pin down my migraine. It went down in severity. But it never went away. It has been moving all over and the quality of the pain changes constantly. I'm not sure what to make of that. I've never had a migraine like this one. My stomach is doing better though. I'm eating better today than yesterday. And I think with my last dose of steroids tomorrow that will help the problem greatly (though I will stay on the acid reducer for a couple more days just do be safe). But the migraine is still there. And we're not sure why. All the imaging looked good. Blood work looked good.
The neurologist and I have decided the next course of treatment is Botox. It would be about every 12 weeks, as a prophylactic, hopefully to replace my daily Topamax (which isn't working well at all anymore). And I'm also going to try to find somewhere to get acupuncture done at least semi-regularly. I realize I have to watch my expenses, but pricier prophylactic treatment is still cheaper than a week in the hospital and another week off work after that (I'm not allowed to go back until I follow up with the neurologist in 1-2 weeks, I'm going to make it 1 week, because I need to get back to work, and I think I'll feel better there anyway).
So. For now, I'm bumming around. I'm still weak from a week in bed. (though I did notice that I didn't have single episode of tachycardia or anything that felt POTSy while I was there....constant fluids for a few days, then xanax around the clock and constant bedrest with intermittent short walks and sitting up with the aide of the bed....yeah, that part felt better.....which leans me even more toward that nagging thought that I need to print off some articles about POTS/dysautonomia and get them to a doc...though now that I have the new neuro on board who is receptive to my conditions, maybe that's the best place to start).
But I have my movies, and my puppy. And it's probably a very good thing that I have my puppy. Because I have to get up every now and then with him. I have to get him more food/water, or take him out, or corral him from the kitchen or play with him a little, which is all good for me. And I've been making myself sit up longer and forcing fluids until I float away. I refuse to get sick again.
So that's that. And my klonopin is long past kicked in. And my puppy has been snoring on the couch next to me for quite some time now.....I think it's bed time.
Night all. I'll check in with you all soon. Like, tomorrow is the plan to get caught up on blogs :)
Much love!
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