IVIG #5 Update Page

I am late with this post! That will teach me not to get the post set up the night before my infusion. 🙂 Fortunately, I keep notes so I can give you an idea how things went.

I had my fifth infusion on Wednesday 4/5/17. I took Benadryl, NAC, Tylenol, and we infused a liter of saline prior to starting the IVIG infusion. During the infusion, I did something I am usually incapable of doing. I NAPPED!. It was a glorious 3.5 hour nap, and I wish I could nap regularly.

Halfway through my infusion, my nurse asked if I would be comfortable increasing the infusion speed from 50 mL/hour to 70. I said sure. It went fine. I did develop some chest pain, but it went away when we stopped the IVIG infusion and infused half a liter of saline. When we restarted the infusion, it didn’t return. After finishing the rest of the IVIG, we infused another half liter of saline and I was done!

I fell asleep at 10:30 that night (early for me!), hoping I would wake up with the ability to celebrate my husband’s birthday with him.

1 day out

I woke up at 10:30 the following day feeling sort of off/flu-like, but without an IVIG headache. I was afraid to move at first. Sometimes I wake up fine, then once I get moving the headache hits. I took some precautionary tylenol and ibuprofen, and got up… still no headache!

I was SO EXCITED! I make a huge deal about birthdays and when I realized my infusion would be the day before my husband’s birthday, I was disappointed. We celebrated over the weekend, but that’s not the same as the real day, especially when he has the day off of work.

The morning went something like this…..

Jackie: I think I will be able to go get birthday wings with you!
Jake: That’s cool, but we don’t have to go.
Jackie: We’re going. Maybe we should go while my body still doesn’t realize it is supposed to be angry with me.
Jake: Alright. So when is this happening?
Jackie: That depends…. do you want a date who is ready quickly, or a date who is prettied up?
Jake: You’re always pretty, so I’ll take the date who is ready soon.

I always tell him he should write a book with his lines. He says they aren’t lines, they’re the truth. I say he should put that line in his book too. LOL

Anyways, I put on his favorite dress and we went to eat. I ordered food and quickly realized I was nauseous (IVIG side effect, not POTS nauseous I don’t think) and shouldn’t have ordered much. It didn’t make it any less fun because I was just so happy to get to be out to lunch with Jake on his birthday! On the way home, the headache slowly crept in, but only to a mild level of severity. I was able to hang out (while resting) with my husband the rest of the day. By night my headache had become moderate in intensity. I took tylenol, ibuprofen, and an anthistamine around bedtime.

2 days out

I woke up with a less severe headache than I had the night before, but was incredibly sleepy. The headache was less severe overall, but hurt when I talked or moved my head. I took ibuprofen and tylenol as often as is safe all day. Maybe I should have let myself sleep longer, but I didn’t want to be unable to sleep that night.

My husband was let off work early and it was a beautiful day. I didn’t feel well enough to do much of anything, but I felt well enough to go for a drive, so that’s what we did. We listened to music and talked about how maybe in a few months, we will be able to get out of the car and actually go hiking in the state parks we are surrounded by. I went to sleep thinking the side effects wouldn’t get any worse since they’d already gotten bad then improved.

3 days out

I was wrong. I was awakened by a severe headache that was worse when lying flat. I popped on my ice hat and took every medication I could safely take. I was sound sensitive but not light sensitive. Everything I tried to eat made me feel nauseous. I rested all day long with my only goal being to be able to make my husband a simple dinner (that he had to run to the store to get food for after working 12 hours, 45 minutes away). I accomplished that goal and kept my headache managed, and he got me chocolate at the store which didn’t make me nauseous, so it was a win. Due to the fact I couldn’t (didn’t?) do my normal stretches, my back hurt and I had trouble sleeping. I finally fell asleep around 3AM.

4 days out

This is today. I woke up without a headache. I did my morning drinks, took a bath, and did a lot of stretching to make up for missing my stretches yesterday. I got to share exciting news with my friends and family about getting more involved with Dysautonomia International. Around noon the headache starting coming back, but extremely mildly. I don’t know how I know, but I can tell it isn’t going to get significantly worse again.

4 thoughts on “IVIG #5 Update Page

Add yours

  1. glad to hear about this. I sort of been following along but not commenting. Hope things continue to improve for you and it’s great about the Dysautonmia international gig! I am so proud of you!

    Liked by 1 person

  2. That’s great about the dysautonomia international. Theory great people. Your inspiring. I’m on my third day of my fifth infusion as I write this. The first two days I was excited that I didn’t have any side effects, nor did they have to do another hep. Cath. Today was a complete 180, just like you with all of the same side effects. And yes I noticed to that the headache was worse lying down, but so was the nauseaness on sitting up. No win there. 😦 what is NAC? I do the same precautions of iv saline, Tylenol and benadryl. Tho I haven’t tried pushing nite fluids in between, I’m going to try that next time. So glad you got to go out with your hubby regardless of you starting to not feel well again. I know I will be down for a week to a week in a half after I get out of the hospital tomorrow. Tho it’s worth feeling better for a few weeks or so after that. Otherwise I would never get to feel better. Thanks for sharing, it’s nice to go thru this with someone who is dealing with the same thing pretty close to the same period of time. How you feel better. 🙂

    Liked by 1 person

  3. I am waiting & waiting on Vanderbilt to accept me as patient…anyone go there for Cardiac Autonomic Neuropathy? I wondered what are the requirements to get the IVIG infusions? Do those infusions help with autoimmune disease? Thanks for your time! Keep getting stronger!


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