On Monday, I had my first infusion of VYEPTI for my migraines. It was actually not too bad. My nurse put in the IV, and I sat there listening to an audiobook for thirty minutes while the medicine dripped into my vein. Following the advice I’d been given, I’d drunk plenty of water the day before and that morning, so he had no trouble finding a good vein to use.

The best part of the experience was my nurse. (The picture above is not him, though he was kind of cute.) He was about my age, maybe a little older, and he made my gaydar go off. So, I’m pretty sure he was gay, and he was a bit flirtatious. He talked me through the procedure and once he found a vein to use, he held a warm compress to my arm before he stuck the needle in me. Just before he inserted the needle, he told me to “Go to my happy place.” Then after a pause, he said, “You don’t have to tell me what it is,” and then sotto voce, he said, “But I’m dying to know.” I am not very quick witted with replies, or I would have said, “it would be very inappropriate for me to say.” I was thinking that my “happy place” was laying with a naked man’s arms wrapped around me. Basically, the picture below:

Hopefully, he’ll be my nurse when I go back for my second infusion, but I doubt I will be so lucky. He made the experience a pleasant one. The needle going in did hurt for a second, but then the pain was over. Once the medicine started entering my bloodstream, I could feel it for just a moment, then I could barely tell anything was happening. When he took out the IV, it didn’t even bleed, and there is no bruise, which I usually have with something like this. There is the faintest little dot where the IV was, and that’s it.

As for VYEPTI’s effectiveness, time will tell. I went to bed Monday night with a major migraine, but it was lessened by morning and was mostly gone by lunchtime. My nurse told me that this medicine had been a real game changer for some people. I received 100 mg/mL of the drug, and he said that at that dosage, it lessens the intensity of the migraines for most people. He said it seems to be most effective at 300 mg/mL, but insurances won’t authorize that much in the beginning. He said the second treatment will be another 100 mg/mL and if it’s not deemed effective enough, then they can usually convince insurance companies to pay for the 300 mg/mL for the third and subsequent treatments. The treatments will be every three months, and my next one is scheduled for October 24.

Rant of the day:I find it incredibly frustrating that doctors know 300 mg/mL works best, but insurance companies require me to continue to suffer for six months before they will allow the treatment that I need. I cannot fathom why the United States allows someone without a medical degree at an insurance company to determine what’s best for my health. Every treatment I have been prescribed by the Headache Clinic has been denied by my insurance, and my neurologist has had to file an appeal to get the treatment approved. The same thing happened with. YEPTI, but the insurance company is still requiring the lower dosage for six months before they will consider the higher, more effective dose. Rant over…for now.

Monday, I’ll be given my first dose of a new headache drug that my neurologist thinks shows great promise. The medicine is called VYEPTI and it’s a 30-minute IV treatment every 3 months. She thinks this might be a good option for several reasons. First, there are very few side effects. Second, for people who had limited success on Emgality, like I did, VYEPTI has proven much more effective. Finally, even though all of these new drugs are part of the anti-CGRP class of drugs, this one is not similar to Aimovig, which I could not tolerate, but is similar to Emgality which was partially successful.

I have to be at Dartmouth Health at 8:15 am Monday morning. I’ll be there early (if God’s willing) because they told me that if I was late in the least they’d have to reschedule because they keep a really tight schedule for this treatment. The appointment is scheduled for two hours, though the infusion is supposed to only take 30-minutes. The treatment won’t be cheap, so I signed up for VYEPTI’s copay assistance program. For signing up, they sent me a welcome pack to make the IV treatment easier. It included: a backpack, journal and pen, eye mask, ear plugs, and hot and cold packs for the IV entry point to relieve any discomfort that it might cause.

I’m running out of migraine treatment options, so I am praying that this will provide some relief.

I just need a mental health break from everything. I still have to work today, but I wish I could stay at home, shut everything off, and just be alone. I can’t do it, but I wish I could.

“Death warmed over” is a phrase my mother used to use. It basically means you feel like crap. I had been advised to get a second booster for the COVID vaccine, so, I made an appointment and on Tuesday, I went to the local CVS and got my shot. The shot itself was a bit deceiving as I never even felt it. I only knew she’d given it to me because she put a bandaid on my arm. By the time. Got to my car, my arm was hurting, but that was all the side effects I had for the rest of the evening. Then, I woke up yesterday morning. I had read that reactions to the second booster would likely be similar to the first booster. Back when I had the first one in October, I had a fever, chills, body aches, and a severe headache. It was made worse by the fact that it can get cold in October in Vermont, and my former landlords had not yet turned on the heat. I felt like I was going to freeze to death. This time, I went through the fever, chills, body aches, and a severe headache during one of the hottest day I have seen in Vermont since I moved up here nearly seven years ago. Mostly, I had to keep the air conditioner and my fans off because I had chills with the fever. I did have to turn on the air conditioner a few times because I felt like the inside of my body was freezing and the outside was just radiating heat. I basically just slept off an on all day. With the headache, I could barely concentrate enough to watch television. Usually these reactions only last for twenty-four hours, so I’m praying to God that I feel better when I wake up this morning.

For most of last week, I did not have a major headache. I still had some head pain, but that comes along with having trigeminal neuralgia and chronic migraines. I have an app on my phone called Migraine Buddy that helps me keep up with my migraines. It lets me track the intensity, the location of the pain, any medication I take, and a host of other factors. I did not have a headache significant enough to log in my Migraine Buddy app. This was quite wonderful as it had been about three months since I went a day without a migraine.

I knew Saturday morning that my luck was running out. I saw an aura early Saturday morning. Luckily, no major migraine materialized, though it was like I could feel it knocking and wanting in. Sort of like when Isabella wants me to wake up, so she just barely touches me with one claw out to wake me. She knows it drives me crazy. When I went to bed Saturday night, I thought I’d dodged a bullet and no headache was coming. How wrong I was! 

I woke up yesterday morning with an intense migraine covering the whole left side of my head and continued down my neck and shoulder. I also had trigeminal neuralgia pain on the front right side of my face. I got up anyway and fed Isabella and made my own breakfast. I watched some TV, but eventually got up and took a nice long shower hoping that it would help. It didn’t. I decided to go back to bed. The sun was very bright and even with my blinds closed, it was too much light, so I put on my sleep mask. I woke up an hour or so later, and I felt marginally better. 

I did some laundry, unloaded the dishwasher, and eventually made lunch. After lunch, I went back to bed for a while. At times throughout the day, I had a break in the storm that was this head pain, but each time it came back, it was stronger than ever. If you think of it like a hurricane, most of the day, I was getting the purer bands. As the storm rotated around, there were intense periods of pain followed my relative calm, though there was still an ominous feeling surrounding my head. By last night, Hurricane Migraine had stalled with my head firmly underneath the northeast quadrant of the hurricane. If you know much about hurricanes, you know that the right front quadrant (northeast corner) is usually the worst and most destructive part of the storm.

I had to take a sick day today. While my migraine might be slightly better, it’s gotten worse since I’ve been awake, and the photosensitivity is worse today. It’s going to be a dark day today. Thankfully, we are expecting rain, and the cloudiness will help control the amount of light I have to deal with.

Sometimes we all get overwhelmed. Earlier this week, I became a bit overwhelmed by work issues. I’ve always felt like I was non-essential, which worried me throughout the early part of the pandemic. Recently, though, I have felt a bit left out of the loop with some projects the museum has been developing. I am good at what I do and a better (and more professional) historian than my colleagues. While they were trained in museology, I was trained as a historian (and have a certificate in museum studies). However, I feel like they don’t value that knowledge. When I had gone above and beyond for the museum and stepped in when there was no one else to do the job, I have not been given any credit, which is one thing, but when the credit is given to someone else, it’s frustrating and infuriating. It is something that has become very stressful in my life.

Like many things in our lives, stress can become overwhelming, and I don’t always handle stress very well. Sometimes, it becomes too much, and I want to shut down or check out. Stress is among numerous factors and triggers for my migraines. Sometimes, I can step away from the situation, calm down, and think rationally. Once I’ve done that, then I can relax. We all need to relax sometimes and not let the stress of the world get to us. We should not view relaxation as merely a luxury. It must be considered an essential part of our overall well-being, healing process, and personal growth. When we relax, we replenish. When we replenish, we feel more capable. When we feel more capable, we shift from survival mode to growth mode.

Without relaxation, we end up just trying to stay afloat, which isn’t enough. Eventually, we will get worn out, which can cause a myriad of health issues, not just mentally but physically. Here’s my advice: if you are short on time, take a few minutes to close your eyes, breathe deeply, and clear your mind. I used to have problems “clearing my mind” until someone gave me some advice. They said, “Close your eyes and picture a blanket with all your worries piled on top. In your mind, take that blanket and bundle up all those things piled on the blanket. Then, imagine that bundle getting smaller and smaller until it disappears. You should then have a clear mind.” For the most part, that advice works for me.

If I have a longer amount of time, I might take a nap, but most often, I log onto Paramount+ and rewatch episodes of Star Trek: Deep Space Nine. I’ve seen the whole series a dozen or more times. It is my escape, my happy place. I can have it on, and it relaxes me, even if I am doing something else at the time. If you have an old favorite TV show you enjoy watching or even a book you enjoy reading, immerse yourself in that activity for a while. Sometimes, I like to cook. The more complicated the recipe, the better. You can also do something physical, like going for a walk, a run, or a swim. Exercise is a great way to clear the mind, get your endorphins flowing, and help you to feel better. 

There are also more intimate ways to relax. I was attending a staff retreat and the keynote speaker was talking about how to relieve stress through exercise. She was listing off things we could do to get exercise that was enjoyable. One of the suggestions was sex. She said, “If you enjoy having sex, have lots of it. It can be exercise too and get the blood pumping.” If you don’t have a partner, sex can also be a source of stress, but you can always take matters into your own hands. You know your own body more than anyone else.

Whatever you do, make sure it’s enjoyable. If you are in the middle of an activity and it’s not as enjoyable as you thought it would be, stop as soon as you can. Try something else instead, but don’t let it add to your stress. Have fun and let go of your worries for a while. Now, if I could just take my own advice.

Yesterday, just as I was stepping into the shower, I saw a migraine aura. People who deal with migraine aura experience visual, sensory or motor disturbances just before a migraine attack. This phenomenon usually lasts an hour or less, and symptoms may range from seeing sparks and zigzags to the inability to speak clearly. For me, it is mostly the sparks that I see, and it usually lasts just a few minutes. I don’t always see an aura before a migraine, but a migraine always begins sometime in the next twenty-four hours after the aura appears. 
When I was younger, the migraine began almost exactly 

When I was younger, the migraine began almost exactly twenty-four hours after I saw an aura. In the last few years, I normally have about thirty minutes to an hour before the migraine sets in. Yesterday’s was a slow progression. It started out mild, so I went to work and tried to work most of the day with my office lights off, but by mid afternoon, that wasn’t working for me anymore. The pain was intensifying and continued to get worse over the course of the evening. Eventually, I just went to bed.

Yesterday, I had an appointment at the Headache Clinic at Dartmouth. I discussed with my neurologist how this last round of Botox did not seem like it was effective at all. I knew there would come a point when Botox would no longer work, but I expected it to be years down the road, but since I had that abscessed tooth that triggered my trigeminal neuralgia, it hasn’t been able to be as effective as it was when I had the first treatments. My neurologist said that sometimes they have to do a reset on the Botox, i.e. step away from it for a few months and try something different, possibly going back to it in the future. She told me a long time ago that migraine treatments are a lot of trial and error.

For now, she increased the dosage of one of my medicines, and she wants me to try a new treatment called Vyepti. It is CGRP drug along the lines of Emgality or Aimovig, both of which I’ve tried. Emgality was moderately effective and cut my migraine days in half, but my neurologist didn’t think that was effective enough since I basically have daily migraines. When I tried the Aimovig, not only did it not prevent a single migraine, but the side effects were awful. Vyepti is similar to Emgality but not Aimovig. Also, Vyepti has been proven more effective in people who had moderate success with Emgality, plus it has relatively few side effects.

There’s two drawbacks: the method of delivery and expense. The drug can only be given through an IV, which takes about an hour, and it must be done at the hospital. Around here, that can only be done at Dartmouth. While the drug manufacturer has a cost savings program, it’s only for the medicine, not the cost of administering the medication. The Botox cost saving program reimbursed me for all costs associated with the Botox and its administration, which together is over $6600 before insurance. Furthermore, my insurance doesn’t cover this new treatment, but I’m sure they will after my neurologist appeals it. My insurance company denies everything, but Dartmouth has always been successful in their appeals.

The first administration of this new treatment is scheduled for August 1. *Fingers crossed* it works. I’ll let you know.

“Early to bed and early to rise makes a man healthy, wealthy, and wise,” is one of the many sayings by Benjamin Franklin in Poor Richard’s Almanack. Last night was a night in which I went to bed early. I was not feeling well. I’d had a migraine all day and something I ate apparently didn’t agree with me and was giving me stomach cramps. So, I went to bed early, and I knew Isabella would have me up before the crack of dawn today. I am usually early-ish to bed (around 10 pm), and Isabella has me up around 5 am every morning. However, I am not sure it has made me “healthy, wealthy, and wise.” It has definitely not made me wealthy. I think it has made me somewhat healthier, but wiser, I am not sure about.

Anyway, I hope all of my American readers have a wonderful Independence Day Weekend. While I don’t have any plans for the weekend, I’d love to hear if you have plans. What are you up to this holiday weekend?