Three Days of Infusion Therapy...



Hello lovely! Welcome to my blog, I hope you've had a great day! Today I wanted to share with you what has happened in the last three days in regards to my chronic headache journey. If you didn't already know, I was diagnosed with something called New Daily Persistent Headache not too long ago, though I've had this since July last year. You can read all about that here (this post is before I got a professional diagnosis even though I knew NDPH is what I had). I've also written a post after finally being diagnosed here. NDPH is not like a daily headache that reoccurs. It just never ends. That's why I can't write down when the headache starts and ends because it started once (in July) and is yet to end. Anyways, the two posts that I've linked delve deeper into the details of living with New Persistent Headache so if you're interested in reading about the condition I would love it if you had a read. 

Just to recap really briefly, I have had several scans and tests including MRI's with and without Gadolinium Contrast Medium (a dye injection to see more clearly) with all results coming back clear. I've tried a LONG list of medications with absolutely no affect, they didn't even take the top of the pain off. Just to clear this question up (I've been asked quite a few times so just thought I would mention) pain killers do not touch the headache even though they help with other pain. I've tried acupuncture, massages and diet changes with no affect. I've also gone months without any medication to see if it happened to be a cluster headache (even though the symptoms didn't exactly match the cluster headache criteria.)

I've seen many doctors and specialists who either haven't listened to me, didn't believe me, or gave up on me after they ran out of suggestions. They refused to acknowledge my suggestion about NDPH as they had never heard of it and didn't think it was a real thing. IT IS A REAL THING! Also just another thing I want to point out is that this is an immune based headache. 

Because I was being thrown around between different doctors and getting no where, mum and I took it upon ourselves and not long ago we contacted that neurologist in Melbourne who is a leading headache expert in Australia and he is the first person to know what I am talking about. It was after this that we found out we had an appointment with the neurologist here so after a little more mucking around from doctors we FINALLY saw the neurologist on Wednesday. Mum asked that the two neurologists communicate and they did. The neurologist here decided to try infusion therapy, which I was all up for. I forgot the medical terminology and medication names but it basically meant I would spend three days in hospital with three rounds of infusions. Now if I'm honest the idea of tubes and needles really freak me out. So having that cannula in my arm for three days was not something I could forget about. 

DAY ONE

I was admitted on Thursday morning and got my cannula put in a little bit later. That was not the most pleasant feeling especially because I just really hate that kind of stuff. I'll obviously skip over all that paper work stuff because it's boring and go straight to when I began my first round of infusions later that day. The machine was quite loud but it didn't bother that much. I got a little drowsy from it but it didn't affect me as much as it was supposed to. My mum and sister left before I finished the infusion, I thought I would be lonely the nurses were so lovely and I had several friends messaging me good luck! The first night was difficult to sleep because I couldn't forget about the tube in my arm and the lady in the next room (divided my curtains) was breathing so incredibly loud. Other than that and being woken up for check ups every four hours, it wasn't so bad. 

DAY TWO

The second day I woke up to some weird breakfast. I had porridge but I swear it was soaked and blended popcorn! I had a shower (I was so glad that I could shower, out of everything my biggest worry was honestly not being able to shower! Maybe it wasn't my biggest worry but it was definitely up there!) Soon afterwards the neurologist popped in to see me and he said I was very resilient to treatment. He then discussed how the treatment would go including the medications when I leave the hospital. 

Then a few hours later we started round two of infusions. This one hit me harder and I was basically knocked out. I woke up to mum in my room and that was so nice seeing as I was alone before. The second day was also the day I started on my new cocktail of medications. Seriously, the list is so long that the neurologist here was a bit apprehensive of giving it to me (the neurologist in Melbourne is the one who gave this combination as he has had good success with it for this very specific headache. Because this is considered to be one of the most treatment refractory headache conditions we needed a much more aggressive approach). I got fairly nauseas after these medications so I was in bed pretty much all day. 

Later that night one of the doctors who was checking up on me noticed something off with my pupils. There were several doctors who came in to double check and that made me a little nervous. They then told me that they would be checking up on me every hour instead of every four hours so I wished myself good luck with sleep that night! And let me tell you how darn bright that torch light is when they shine it in your eyes at night. The next morning they told me that my eyes were dilating as they were supposed to but one was larger than the other. It's all normal now though so nothing to worry about. 

DAY THREE

Day three breakfast was better! :D 
I actually felt like I slept better than I usually do. This morning was pretty much the same as the other two. Continuous checkups, nurses chatting to me sometimes and then the medications. The third round of infusions happened earlier than the previous two, which meant I would be able to go home sooner than I thought! Again, I got very drowsy. Soon my most feared part would be coming up. Taking out the cannula! I was nervous. It actually didn't hurt at all though, the worst part was the tape. Then I was on my way home to wash my hair (best feeling ever) and sleep, but I ended up falling asleep first.

So that's what happened in the last three days! Now the actual worst part is that the infusion therapy didn't affect on my headache either. So I've got my hopes on this combination! 

Hope you enjoyed reading this post and keeping up with this headache journey (not really sure what to call it).