What a difference a day makes.

Yesterday, I had an extreme reaction to the tiny dose of doxylamine succinate (unisom) that I take to sleep. It is the only drug that has worked and I have been careful to use only 1/4pill at a time and only a few nights at a time. But not careful enough, I guess. My body totally melted down yesterday. There’s no other way to describe it. Pre-syncope doesn’t do it justice. It felt like an antihistamine overdose: very shaky, clammy, headachy, short of breath, heart rate all over the place, blood pressure bottoming out, collapsy, chilled to the bone (mini convulsions of chills), and then swollen and heat drenched…

I really thought I was going to have to go to the hospital and, once I knew I wouldn’t pass out and wouldn’t need paramedics, the fear and depression set in. I’m scared of everything. I’m scared of drugs, eating, not sleeping, talking, walking, not walking, dying alone. This is no way to live. When I asked my husband what he loved about me when he first met me, he said, “You were fearless.” This makes me lament my current brain even more. What I would give to be fearless again!

I have a tilt table test scheduled for Monday and, if the horror stories online weren’t enough to terrify me, having this meltdown happen to me yesterday has definitely doused all hopefulness that the test could go well. Today I feel awful – extremely, achy, stiff, sore, and depleted. My eyes are swollen and my head is pounding. I feel just like I did after each of my syncope and anaphylaxis episodes: like I lay all night in a room full of black smoke while MSG dripped into my veins and strong men beat me with baseball bats. So, I’m really going to go get syncope symptoms provoked in a lab on Monday? I can’t take any meds this weekend and no caffeine, food or water the day of the test. That alone could be really bad for me. I’m scared of dehydration and low blood sugar. They are also conducting a sweat test, which I’m told is painful, and they don’t offer IV fluids after the test.

There are other things adding to my current distress:
I missed my physical therapy appointment yesterday. This is the second appointment I’ve missed with a practitioner who is in such high demand it takes months to get in to see him. I’m mortified and guilty.
I wanted to call Z. and Skype with E. (my best friends), both of which must be put on hold for weeks.
I’ve told my sister no the last five times she has offered to come over for a visit.
I was hoping and praying I could go to the cemetery on my scooter with my dogs this weekend, but it’s not going to happen. It has been weeks since I’ve gone there and the weather is meant to be pretty good. This gives it a sense of urgency because it’ll be wet and cold for the next six months.
My brother the pilot has another layover in Seattle two days after the autonomic testing and I don’t think I’ll be up to seeing him.
My appointment with the neurologist to go over my test results is on Halloween at 8am. Most of you know the fear this strikes in me. Up at 6am (after trying to sleep with no drugs) without my three hours of “gather my strength” time in bed in the morning, no food (because I can’t eat that early), trying to talk to a doctor and comprehend that early in the morning…?!
My gallbladder (?) twinge is back with a vengeance and I’m scared all over again about having to get emergency surgery with this sensitive, intolerant, anaphylactic body.
This happened right after I had added back steak and bacon to my diet and right before I was going to challenge eggs, so now I’m left nervous to eat any of those things (I was so looking forward to a day with eggs!).
And, finally, I’m sure I have a mast cell disorder (which I’ll write about one day) and that makes me more scared than my normal ME scared. If I have such a vicious reaction to the drug that is meant to prevent allergic reactions, what hope is there for me? I looked into a low-histamine diet and Jesus! No dried fruit, no black tea, no apples, oranges, pineapple, spinach, chocolate, leftover or processed meat etc. etc. Just give me a pill and fix it, dammit!

Anyway, sorry, my fingers are swollen and I have to stop typing. This was going to be a very short post to let friends and family know that I am going to try my hardest to do NOTHING for the rest of the month. I’ll be out of touch, but will read anything you write and thank you for your support and understanding. Gratitude for the fact that I’m not alone. X
And for the Project Runway finale I get to watch right now! πŸ˜‰

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12 thoughts on “What a difference a day makes.

  1. You are very much not alone E. As hard it is I know, the less you do, the better you will feel. Sending you lots of luck and support for Monday. Try and put the horror stories out of your head, easier said than done I know. Really hoping things begin to pick up a bit for you really soon, you don’t deserve this continuous barrage of horridness. X

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  2. triciaruth says:

    That sounds like a great big pile of stinking, steaming crap to deal with 😦 sorry you’re having such a tough time.

    When I was first diagnosed I had some counselling sessions through work and one of the most helpful exercises in the long term was thinking of a time when I was healthy and fit and experiencing the emotions an feelings I had then and trying to ‘pull’ them through to the present. Whilst it doesn’t help physically it helped me to armour myself emotionally.

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  3. MCS Gal says:

    Hang in there. Just try and take life one day, one test/appointment, or maybe just one hour at a time. It sounds like you are trying to eat the elephant (everything you have going for the rest of the month) in one bite πŸ™‚ I am not saying that what you are facing is not difficult, I recognize that your life is challenging right now but you are strong and fearless. Being fearless is not being afraid to be afraid.

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  4. Trisha says:

    Sorry you are dealing with all this. It’s a lot for anyone but way, way too much for a person not feeling well. It’s amazing (not always in a good way) how things can change from one day to the next. One day we feel fine, the next we don’t and then the fear gets a hold of us. And then everything can change again, just as fast. When I feel overwhelmed like this I try to just focus on breathing and telling myself that, in this moment, I’m okay. But I know this is easier said than done when not feeling well and faced with frightening possibilities. I hope you can rest today and feel stronger tomorrow. Sending healing energy your way.

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  5. Christine says:

    I swear, I could have written so many of the same things..it’s scary. we’re like mental twins! πŸ™‚

    I’m terrified and depressed, too..almost all of the time. You’re not the only one, and I just want to make SURE you know that.

    I’ll be looking forward to your updates when you’re able to post again.

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  6. Vicky-Louise says:

    I get your fears.

    I also understand the fear about reacting to so many things, as I started to increasingly become reactive/allergic to things. It got to the point where every time I ate a meal, I would be so ill afterwards that I started not eating. I felt better even though I was starving. believe I have a degree of mast cell activation component to the disease process.

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  7. Jackie says:

    😦 Not the Unisom too! That is so awful. I’m sorry you have to live in so much fear and you don’t feel any sense of freedom. I just wanted you to know I’m always here and I think about you often. If only thoughts could cure!

    I didn’t think the QSART was extraordinarily painful, but it did hurt. It’s painful for a second at a time or so and sort of felt like an IV needle poke I thought. I’m so sorry you have all of this testing when you’re feeling cruddy. I’m hoping this means it’ll show whatever it is there is to find!

    Two questions just in case due to how sick you are feeling, you didn’t think to ask… Could you call the medical center you are going to and sort of “demand” IV fluids after the testing? Ask why it isn’t possible to get fluids afterwards. Is it your doctor just needing to order them or is it the center causing the issue (or are they one and the same)? They put an IV in you for the tilt table test many places, why can’t they just stick a saline on it when they’re done? Second, could you call and ask for a different appointment with your doctor or ask to be put on a cancellation list for appointments after noon that week?

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    • E. Milo says:

      I just reread about your tilt table test at mayo and I can’t believe they had you fast for 11 hrs! The clinic here told me to eat and drink normally this morning and only fast for two hours prior, so I had my normal two pints of water, cup of tea, banana and cereal. Now I think that was a mistake. Also, I woke up feeling VERY sick this morning. In my old life I would say I’m coming down with a bad flu, in this life I have no idea. Period? Virus? My usual disease? I’m shaky and freezing and nauseous and I haven’t even gotten out of bed yet!

      I asked them about an IV and they pretty resolutely said no, so I’m out of luck. No doctor will be there, either- just techs. I had gotten over my nerves until I woke up feeling this way!

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  8. dawnhosking says:

    Stay strong, you are not alone. Sending gentle hugs your way xx

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  9. Hang in there. πŸ™‚

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  10. […] my sleep was the night before, and how the coming day will be. It averages around 60 bpm. After my Unisom “overdose” and, after the autonomic testing, my morning HR was 65 – 66 bpm for a few days. It […]

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  11. […] A. visited ; saw ENT doctor; saw “environmental” doctor; saw neurologist; had bad reaction to Unisom; had hellish 2-week repercussions to autonomic testing. November:Β Tried low-histamine diet for 5 […]

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