It's been a couple of days and I've still not gotten around to updating you on Lizze's appointment at the Cleveland Clinic. As a quick reminder, she was at the Neurological Center for Pain, seeking help for her migraines.
Lizze went into this appointment with very, very low expectations because for the most part, she's without hope that she will ever live a day without pain.
I get where she's coming from and it breaks my heart to see her go through this. That said, I'm carrying the touch in regards to hope because I cannot accept a reality in which she can't find relief from her migraine. She deserves to exist without pain and I will keep working towards that end.
We arrived a bit early but only had to wait a short while before being called back.
She had her vitals taken and then we had about a 15-minute wait before the doctor came in. I personally didn't know what to expect and I was taken aback when he walked in.
The doctor was middle eastern and very young. He looked like he was in his twenties and that made me feel pretty goddamn old. Lol
Anyway, he asked Lizze how she was doing because it was pretty obvious she wasn't doing well. Her head hurt so bad she could barely hold it up. The doctor immediately took notice and suggested we turn the lights off. I didn't realize we could do that cause the switch looked like it was simply a sensor and not something that could be manually adjusted.
I turned the main light off and turned on the very dim light that allowed us to basically see each other and that was about it. The main light in the room was now coming from the computer screen the doctor was sitting in front of.
Let me just say that in all the years of going to neurologists for help with her migraines, not one single doctor has ever offered to turn the lights off for her. It's amazing how something so simple can have such a positive impact.
The doctor was very well spoken. More importantly, however, he was a very good listener and he took Lizze very seriously.
For years, Lizze has been telling doctors that her brain hurts and for years, doctors have told her she was wrong because the brain doesn't feel anything.
This new doctor was different.
When Lizze told him that her brain hurts, she had tears in her eyes when he told her he believed her and that it was absolutely possible. He said that the brain has no pain receptors but that there are tissues surrounding the brain that did. Those tissues are so close to the brain that there's no way for her to know the difference and it made perfect sense that it felt like her brain hurt.
He went over a bunch of medical history and listened to Lizze describe all she's experienced. We never felt rushed and he made it a point to tell her that the information she provided was important and very helpful.
Basically, they approach migraines from multiple angles:
- Diet
- Exercise
- Medication
- Sleep
- Psychological
Lizze is already working on 4 of the 5 things and has been for some time. There's absolutely room for improvement but he's very happy with what's she's already doing. The one thing we need to address is the medication aspect.
We discussed how pain medication was not a good option. That's something that we all agree on. We went over several options and I asked about a brand new medication called Aimovig. I read an article in the New York Times earlier this year about it and how it's a huge leap forward in the prevention of migraines.
He talked about it with us and said if that's what we want to do, he will set it up.
Aimovig is different because it's the first medication created specifically for migraines. It's not a blood pressure, antidepressant, or anticonvulsant medication being used off-label to treat migraines. This means almost no side effects because all it does is interfere with the 1 specific protein that causes migraines.
It's a once a month injection and like Gavin's IVIG Infusions, it's a specialty medication and must be shipped from the Cleveland Clinic pharmacy.
It will ship in a couple of weeks and we go from there. It takes about a week to work after it's been injected.
This is the first bit of hope Lizze has had in a very long time. She's had the same migraine for almost 7 years now. It never stops and often keeps her up at night.
We also talked about the IMATCH program again. This is what we thought was pain rehabilitation and I guess that's sorta what it is but it was not explained very well to us the last time. We now have a very different understanding because it's being run by new people and they did a fantastic job of explaining things. We totally had the wrong impression the last time.
Lizze and I aren't sure what to do with that but she's very open to it. Logistically, there are many things we'd have to figure out.
The big difference this time around is that her seeing the new doctor isn't contingent on doing the IMATCH program. That's what we were told the last time.
We also talked about a new device that can break migraines and/or significantly reduce the pain. It's about $500 and not covered by insurance. I've reached out to the company and I'm waiting to hear back.
This was a hugely positive experience for Lizze and I both. We don't even have to worry about insurance for the Aimovig because the manufacturer will give her the first years worth of treatments for free. If it works, insurance will pick it up after.
I can't explain how awesome her new doctor is. Lizze is cautiously optimistic for the first time in forever. There's a real chance that she can either see a reduction in pain or even see her migraine broken completely. The most likely scenario is that her pain will be reduced and perhaps she doesn't have a migraine every single day. That would be significant progress. ☺
I'm so grateful that we found a doctor that not only takes her seriously but treats her with respect and is proactive in his approach to treatment.
Time will tell if the new medication will work but for the first time in a long time, she has a slight glimmer of hope. ☺
