Migraine | Me, Myself, and Evan's

The Confusion & Memory Loss

Posted on July 14, 20161 Comment

Today was strange and a bit frightening. I started my morning by working from home. Around 10:30 AM I started to get a headache. I knew that that Prednisone taper would eventually catch up to me! I called my husband to tell him about my headache and it was like my mind completely went blank. I barely remember calling him at all. All I remember is that I was having a great deal of trouble forming thoughts and sentences and I felt very confused, overwhelmed, and dizzy. I think I freaked him out. To be honest, though, I freaked myself out. I kept stammering and restarting the same sentence over and over again. It felt almost like an out-of-body experience. I figured the best thing to do was to sleep it off.

I napped for a few hours and then apparently spoke to my husband on the phone again. This is yet another conversation I don’t remember having. When he got home from work, he had to physically show me on his phone’s call log that we had a five minute conversation this afternoon. I feel fine now as I’m writing this, but I’m still a little freaked out from earlier. Confusion is one thing – I’ve been having moments of confusion and times I haven’t been able to concentrate for weeks, but memory loss?! Hopefully that doesn’t happen again.

The Huge Improvement

Posted on July 2, 20161 Comment

Today was leaps and bounds better than the past few days. First and foremost, I woke up without a headache for the first time in almost a week. Second, I was able to get up and walk around the apartment. I had spent the last four days almost completely bedridden. Today I woke up, took a shower, ate breakfast at the table with my sister and her roommate, and then helped them get ready and make plans for the day. It was so nice spending time with them! I finished packing some miscellaneous stuff for the cottage and then my husband and I started the trip upstate. Luckily, I survived the four hour car ride without a hitch! I never would have made it if we had stuck to the original plan and gone up last night. It was definitely worth waiting.

The cottage is relaxing, as always. It doesn’t hurt that we have WiFi here now, too. As I write this I’m sitting by the fire, listening to a live band across the lake, and other lake goers are setting off some fireworks. It’s so nice to be around other people and to be able to relax. It’s nice not having to worry about the noise of the music or sparklers giving me a headache or the bright light of the fire bothering my eyes. Hell, it’s nice even just sitting up in a chair without feeling shaky. I’ll leave you with a picture of my current view.

The Surprise Visitors

Posted on July 1, 20163 Comments

My little sister and her roommate were supposed to fly to Denver, CO last night for vacation, but due to flash flooding, all flights from Chicago to Denver were grounded and the airline couldn’t get them on a flight until Saturday night. Since they already had the days off of work and their bags were packed, they decided to take a spontaneous trip to NYC to stay at our apartment while we’re at the cottage. I’m excited that my sister got to see my apartment, but I’m even more excited that we overlap for about a day and a half, meaning that I got to see my sister today! It doesn’t make up for the Chicago trip I had to miss last weekend, but it’s still ten times better than not seeing her at all! I knew I missed her, but I forgot how much until I got to hug her.

In terms of my side effects, today was certainly better than the past few days. I still didn’t leave bed much and my appetite this morning and early afternoon was practically non-existent, but by dinner I was able to eat a real meal and sit up in bed for a little bit. For some reason, even though it makes me extremely overheated, laying on my husband’s shoulder makes my headache better. It might just be psychological, but I’ll take it! Also, the makeshift blackout curtains that my husband hung make a huge difference. My eyes have been super sensitive to the light.

The one thing that hasn’t improved at all is showering. Last night’s shower was rough. I think I was finally able to pinpoint the exact cause of the shortness of breath, though. The problem is the steam. Since our new apartment’s master bathroom has a small, square, glassed-in standing shower, the steam accumulates fairly quickly. Don’t get me wrong, I love having a glass shower, but I wish it was a little bigger so the steam had somewhere to go. The only way to obtain any relief was to periodically open the shower door to let some steam out and some cold air in. Basically anytime I wasn’t under the water (ex. soaping up or shampooing my hair) I had to leave the glass door open. Again, not ideal, but at least it was a workaround. Hopefully this won’t be a problem forever.

The only other update is that my foot cramps are back. That is definitely due to the Prednisone, though, so hopefully it won’t be a problem within a few weeks. I’ll just have to deal with it until then.

I’m finally all packed for the cottage and we’re hoping to leave tomorrow afternoon. Fingers crossed! Last time we headed to the cottage was Memorial Day Weekend and that didn’t end well, so here’s to hoping we finally get the relaxing week away that we want/need. My husband has been such a trooper taking care of me and waiting on me for over a month at this point – he deserves the chance to relax! Hopefully my Percocet/Oxycodone will keep the headache at bay long enough for me to relax this week, as well! Or at least long enough for me to survive the four hour drive upstate!

The Slight Improvement

Posted on June 30, 2016

The side effects were slightly less intense today. Don’t get me wrong, my headache was still raging and the loss of appetite kept coming and going, but at least I had a two hour window where I was able to get some work done. Not much else to report.

The Useless Day

Posted on June 29, 20162 Comments

So much for working from home… Today was a nightmare. The side effects of the IVIG and Prednisone were non-stop torture. I can’t even think of a time today where I was able to sit up for more than five minutes. Also, my foot cramps returned and I had a total loss of appetite. I had to force myself to eat which, in turn, only angered my belly. Around lunchtime I called my husband crying and begged him to come home from work because I didn’t feel good and I was scared to be alone. Luckily, his boss is very understanding and let him work the afternoon from home.

I don’t know what I would have done this last month if I didn’t have my husband. He has been my saving grace. Today, for instance, he came home and made sure I ate lunch, grabbed me an ice pack for my headache, stroked my hair, and repeatedly kissed my forehead. The forehead kisses this last month have been numerous and much-appreciated. Nothing makes me feel more loved than a forehead kiss.

In general, today’s main issue was the headache. I suppose a better word would be migraine. My husband hung the black-out curtains in the bedroom so I didn’t have to deal with the light making my migraine worse. He also unscrewed a few of the lightbulbs in the bathroom so it wasn’t overwhelmingly bright every time I went in there. Even so, the pain was pounding on the right side of my head and it was pounding ALL day. I sincerely hope tomorrow is better. Laying in bed all day gets old after a while. I have work to do and I have to pack for the cottage.

I read an article online about IVIG that said the side effects only last up to three days after treatment is finished. I hope that’s right because it would mean the side effects should be gone by end of day tomorrow! I guess that is when I’ll find out how much of this is IVIG-related and how much is due to the Prednisone taper. Fingers crossed that tomorrow is a better day!

The Side Effects

Posted on June 28, 20161 Comment

I hope every day isn’t going to be like today. I wish I could at least know how long these IVIG side effects are going to last. Or I wish I could know how much of what I’m feeling is due to Prednisone withdrawal. I’m inclined to believe it is a combination, like the doctor suggested, but I’m praying most of it is just from the IVIG, meaning it will subside and eventually fade away within the next week or so. If these headaches and lack of concentration are mostly due to Prednisone tapering, I’m screwed for at least the next month. UGH!

The plan today, tomorrow, & Thursday is to work from home, but today was a total fail. I logged on around 8AM, had breakfast, took my pills, worked for about an hour and then the intense migraine set in and looking at the computer screen was making me want to claw my eyes out. I had to walk away. I took a couple of Percocet and then immediately fell asleep for an hour or hour and a half. By the time I woke up, the painkillers had kicked in and I had about 30-45 useful minutes before my headache returned. Anddddddd repeat the same process. All day. I ended up having to cancel/reschedule my graduate school interview that was scheduled for 6PM via Skype because I couldn’t function for more than a few minutes at a time. I feel bad cancelling and I hope it doesn’t hurt my chances of admission, but there is no way I would have been able to accurately portray myself in a video interview like this.

By the time dinner rolled around, I didn’t have much of an appetite. I made myself eat anyways, especially since I didn’t eat lunch. Then I had to face my newest enemy – the shower. Once again, my oxygen level dropped and my heart rate shot up. I don’t know if it is the steam, the enclosed space, or the fact that I’m standing for more than a couple of minutes, but it is extremely frustrating.

I think the thing that is perhaps the most frustrating, though, is how crappy I feel in general. A couple of weeks ago when my platelet count was awful, I felt totally fine. Things were going crazy inside my body, but on the outside, I had almost no symptoms. At the time it was terrifying, but now I miss it. It’s ironic how “getting better” has made me feel so, so much worse. Now that my platelets have reached an acceptable level, I’m all of a sudden completely broken on the outside. How does that make any sense?! Maybe this IVIG treatment was more intense than I had originally thought.

The Final IVIG Treatment

Posted on June 27, 2016

Today was a disaster of a day. From the moment I woke up I had an excruciating headache. By the time I got to the doctor’s office for my 9AM appointment, I was very shaky and sick to my stomach. They took me in the back a little after 9:15 and I chose the corner recliner again. I took two Tylenol and then the nurse drew three vials of blood. Luckily, the vein on my right elbow that they used the first day was healed enough to be used again. That meant no searching for a vein on my forearm and no bruise! They started me on a bag of fluids and then the Solu-Medrol. By this point, it had been almost an hour and my symptoms weren’t improving at all. I was shaking and whimpering in the chair and writhing around in pain. Then, the hot flashes started. I was literally dripping sweat while everyone around me had on blankets. All of a sudden the nausea hit me HARD and I had to ask for a puke bucket. The nurses asked if I had eaten any breakfast, which I had (blueberry bagel with butter and jelly), and then pricked my finger to check my blood sugar. My blood sugar was at 76, which they said was low considering what I’d eaten for breakfast, so they brought me juice and asked me to sip on it.

At this point, the nurses were concerned and called my doctor. He came back and saw the condition I was in and asked the nurses to give me a Zofran drip to help with the upset stomach. He then told me that the IVIG was working! He said my hemoglobin was at 10.5 and my platelets had skyrocketed to 159,000 over the weekend! Unfortunately, the side effects I was experiencing were a combination of the IVIG taking its toll on my body and the lower dose of steroids (withdrawal). At least it wasn’t all for nothing! I would hate to have these miserable side effects AND be told the IVIG didn’t work.

After the doctor left the room the nurse started the Zofran drip followed by the Benadryl, which put me to sleep. By the time I woke up it was 11:30 already and they were JUST starting the first vial of Carimune NF. Thankfully, the Zofran helped my stomach immensely! I still had no appetite though. I didn’t touch any of my snacks except for a PB&J and even that didn’t settle well.

They ran the first drip slowly because I was already in such a weak state. The vial finished around 1:00 and the second finished by 2:00. Based on my timelines from my previous three treatments, I had expected to be done and out of there by 2:00, but I was only halfway done. Halfway?! That fact sank in and I started to get visibly upset. Yes, this means I cried. I was in a room full of elderly patients and I was crying and whimpering in the corner while they stared at me. I don’t even feel bad. I can’t even begin to explain the amount of pain I was in.

The nurses started the third vial at 2:15, gave me two more Tylenol, and sped up the drip. By the time the bottle finished at 3:25, I was in even worse shape. I have never felt so uncomfortable and miserable in my entire life. I asked the nurse to talk to the doctor about skipping the fourth and final vial. Another hour in that chair would have been excruciating. Luckily, he told the nurse it was fine to skip the last vial and that I should head to his office so we can talk about next steps before I head home.

My husband drove over from work and met me in the doctor’s office so I wouldn’t have to be alone. The doctor answered my questions (below) and gave me a prescription for Percocet (a combination of Oxycodone & Tylenol) to combat the awful headaches.

I slept in the car while my husband ran into the pharmacy to fill my prescription. As soon as I got home I took two Percocet (instructions say take 1-2 every 4-6 hours for pain) and passed out. When I woke up a couple of hours later I felt infinitely better, but the relief was short-lived.

Can I go to the cottage?
Yes, absolutely!

Can I swim in the lake?
Of course!

When is my next appointment/blood draw?
One week from today. Most places will be closed on the fourth, so Tuesday is fine. I will need to go to a Quest or LabCorp up near the cottage. He gave me a prescription for bloodwork and the results just need to be faxed to him. He is also on vacation next week anyways, so it’s not a big deal that I am not in town.

How frequent will they be after that?
Depends on how the numbers looks. While I’m still on the steroids, blood draws will likely be once a week to make sure my numbers are holding steady on the lower dose of steroids. My next appointment with the doctor is Monday, July 11th.

Will I ever be able to drink alcohol again?
Luckily, I didn’t even have to bring this up – he addressed it on his own! He said that I can definitely have a couple drinks each day like a glass of wine or a beer. He just doesn’t want me doing keg stands. So looks like I’ll be able to sip on some Moscato or hard cider next week after all! I’m still going to take it easy, but it’s nice to know I have options.

How much Prednisone should I be taking and when will my next taper be?
He said taking 75 mg over the weekend was perfect – thank goodness! He wants me to stay on the 75 mg a day until I see him on July 11th. My assumption is that he will then taper me to 50 mg a day, so long as my counts are holding steady.