IVIG #10 was actually a week ago. Hopefully after you hear about how busy I have been, you will forgive me for not posting the IVIG #10 update page on time.
For starters, we are in the middle of buying a house which is exciting but also requires a good amount of energy. Secondly, my stepdaughter (7) was here for the week leading up to IVIG #10 and my husband was off work which meant day to day life was busier (and more fun) than normal.
Let’s backup to when we last spoke – shortly after IVIG #9. IVIG #9 recovery turned out to be rough. After what seemed like a promising first few days post infusion, I developed a headache that would not go away. Since it was worse when lying flat, it seems logical to conclude it was likely related to increased intracranial pressure, also known as intracranial hypertension. (Intracranial pressure increases when you are lying down).
I asked my autonomic neurologist about trying Diamox (acetazolamide) which reduces cerebral spinal fluid pressure. (Increased CSF pressure is what causes increased intracranial pressure.) He was on board for giving Diamox a try, however it came to his attention that since I am tongue swelling allergic to Bactrim, I may be allergic to Diamox. Therefore, I have not tried it yet. If I want to, I need to take the first dose at an allergist’s office.
With trying Diamox off the table given my schedule and energy levels, I pondered what else could be done to get the headaches under control before our week with my stepdaughter began. I realized I was coming up on the due date for my second round of Botox injections, which I get every 3 months for migraines. My neurologist who injects the Botox into 31 points on my head and neck said roughly 80% of his patients do not feel improvements until their second round of shots. I wondered if perhaps the first round of Botox had been more helpful than I realized and part of my head pain was the Botox wearing off.
Medical Nightmares, Literally
Fortunately a few days into our family week, my headache finally began to go away. Towards the end of the week, I had a dream my IVIG was infusing too quickly. No matter what we did, the IV pump kept resetting itself. To my despair, the infusion was completed in half an hour when it is supposed to take six. I woke up amused by the obviousness of my dream. Ever since the IV pump was set wrong a few infusions ago, I am fearful of it happening again – especially since my headaches have lasted longer ever since the error.
Then suddenly it hit me: It was Saturday morning. My infusion was planned for Monday morning. I had not been shipped my medicine yet! Usually they ship it about a week ahead of time.
Where is my medicine!?
After frantically texting my nurse, I had the person on call for the pharmacy paged in order to try and sort out what could be done on a Saturday. I found out the only type of shipping they do in the summer is one day shipping since the medication cannot get warm; even with ice packs and a cooler bag, they are not willing to risk it. This meant they couldn’t ship it that day since FedEx, who they have a contract with, doesn’t deliver on Sundays. FedEx also doesn’t receive new shipments on Sundays, therefore they wouldn’t be shipping it until Monday.
I wasn’t pleased. If you are familiar with me or my blog, you know I carefully schedule the rest of my life around the fact that I am usually stuck in bed for a few days following an infusion. To add insult to injury, the frustratingly likable and empathetic pharmacist on call – who was unsure why IVIG wasn’t shipped – made it difficult for me to flip out and demand she find a way to use USPS Sunday delivery to get my medicine to me. I couldn’t summon up the energy to be as patiently proactive as the situation required, so reluctantly, I accepted my infusion would have to be Tuesday. I let my nurse, who had to shuffle around her schedule, know.
Just as I finished congratulating myself on not melting down over this major change in my schedule, I realized I now had IVIG and Botox injections scheduled for the same day. Argh! I called my neurologist’s office and explained the situation (read: I begged) and was offered a Thursday appointment, which I accepted. I hung up and promptly wondered what in the world I was thinking. Thursday would be 2 days out from IVIG, and 2 days out is my most symptomatic day with side effects. On top of that, my husband would be at work. How would I get there? I don’t drive on symptomatic days. I called them right back and said that although I would drugged with two max doses of Benadryl by 4PM, I would be able to make it after all.
IVIG Infusion #10
Tuesday arrived and we started my infusion at 7:30 in order to be done in time to leave town at 3:30 for Botox. At one point during my infusion, I had an IV line going in each arm. Saline was being infused in the left arm and IVIG in the right arm. (You cannot run IVIG and saline in the same line because crystals will form in the line and the crystals are hard on the kidneys.) I was thankful my nurse suggested this option since otherwise I would have had to choose between being on time for Botox and getting full 2 liters of saline in.
I arrived for Botox on time. The office assistant mentioned that based on how much Benadryl I had in me, she was expecting me to be much less alert and put together. What can I say? Being difficult to sedate is a talent of mine. Once called back, I showed my neurologist how the first round of Botox had resulted in one of my eyebrows being slightly higher than the other. He said he would work on it. LOL. The injection of the Botox was uneventful, and in the days following, I didn’t have any side effect whatsoever from the injections, not even a stiff neck. Also, my eyebrows look more even now. So yay for all that.
IVIG #10 Recovery
After getting home from the Botox appointment I went to bed and slept for 17 hours. The next day I was fatigued and had moderate to severe head pain any time I talked, but otherwise the pain was mild. For several nights following IVIG, I let myself sleep as much as I wanted without fear of destroying my sleep schedule. Usually I only allow unlimited sleep for 2 days, but I wanted to see if doing it longer would make a difference. I slept 17 hours the first night, 12 the second night, and 10 hours the third and fourth nights. Four days out from my infusion, I still had a mild headache, but it did not get worse when I spoke. I was able to spend quality time with my family and even went to the birthday party of our friends’ daughter. As for my sleep schedule…. My already delayed sleep schedule is messed up, but assuming it gets back in line soon, I think it was worth it.
You might wondering if I ever found out why my medicine wasn’t shipped. It turns out the doctor’s order for how often IVIG should be given hadn’t been updated, so they were under the impression my infusions would only be every 4 weeks going forward, not every 2 weeks like they have been. It is fixed now and should never happen again, so all is good.
My next infusion is in five days. In the meantime, I will be busy getting things done related to our move – picking paint/flooring, packing, keeping track of all the different inspections. If you have any moving tips, let me know!
As always, thank you to my amazing family. From having home cooked meals in my fridge thanks to my Mom to my husband getting up in the mornings with our daughter so I can sleep, having a whole tribe of people I can count on really makes a difference.