I have finally been to a neurologist here in Hawaii! Because of covid and the closures around medical care I've been putting it off, but it finally came down to a desperate request for a referral from my Dr. She checked in with cardiology and neurology to see who wanted me and neurology said "we do!"
You may remember way back in June 2019, just weeks before we made the big move over the ocean, I saw the autonomic nervous system dysfunction specialist at Stanford Neuroscience and neurology. Fancy I know. He did a bazillion tests and he declared, though not quite that dramatically, that I had "cardiovascular autonomic dysfunction and orthostatic intolerance. There is no cure, it is generally caused by something else (in my case connective tissue disease -lupus-ey my rheumatologist liked to call it) so treat that underlying condition and it may help it not get worse, treat the individual symptoms with individual specialists, but it is a condition that will most likely get worse." That'll be 800$ please. Ha! He didn't say that but that's what they charged, which honestly for all the tests wasn't that bad!
But I digress. So because this was mere weeks before we moved I never had a chance to follow up with Kaiser neurology in California and because of covid I haven't had a chance here either.
Fast forward to my appointment with the lovely Dr P, neurologist extraordinaire.
I was beyond nervous, maybe anxious is a better word, for this appointment because my battle with physical fatigue is just soul crushing at this point and continues to be a huge barrier to life in general. Many many things have improved because of the move, sadly that's not one of them. I have numerous neurological symptoms as well, and I've learned they come in 'flare ups' also, but the fatigue is by far my biggest obstacle.
I felt like my life was in this man's hands because there aren't that many neurologists here. If I didn't like a Dr in California I changed Drs/facilities. Here there's one Kaiser main medical offices, with several satellites, and one hospital. So this was it for a neurology dept. There is only one.
Because of the pandemic I had to go alone. They won't allow anyone to go with you, so I didn't have my wonderful husband to correct me when I say "I'm good! It's not that bad" and say "she's miserable actually but can't seem to say that to anyone" lol. But as I left the house he called out "be sure to tell him how miserable you are, and how you can't get out of bed, and you feel like you have weights on all of your limbs! Love you!"
Thank you honey❤️
So I did. I gave him the rundown of the past 3 years of neurological issues from when they started after a medication reaction.
He asked me:
"What would you say is your number one problem preventing you from living a normal life?"
Without hesitation "Fatigue. Not sleepiness, I actually don't sleep much, but physical fatigue like I can barely lift my limbs and I feel like I'm wearing a suit that weighs 50lbs when I try to move. Sometimes it makes me want to cry just walking to the bathroom" (M would be so proud!)
"Pain?"
"Yes but I can handle that better than the fatigue"
"Imbalance? Dizziness?"
"Always, I run into walls and drop things constantly and live on Dramamine, but I can handle that"
"Ok, let's try this…."
He offered me three choices: stimulants (ritalin, adderall, amphetamines basically), a medication that is prescribed for MS fatigue and narcolepsy, and a medication to better manage my low blood pressure (in addition to the one I already take). And he offered an MRI.
"Do you recommend an MRI since it's been three years? Which medication do you think?"
And then he said something that almost made me cry:
"I will do whatever you want to do out of those options. And we'll keep trying things until we find something that helps."
IMAGINE having a Dr who's on your side and just wants to help. It's priceless in my position.
We clarified my need for specialists in urology, gastroenterology and rheumatology also and possibly back to physical therapy, and I was on my way to think about my choices…. Sort of in shock honestly. This Dr was more than willing to give me the stimulants I was denied several times in California, stating "I don't know why they did that, we use these all the time for disease associated fatigue, especially in MS", and he offered options I had never heard of or considered.
After research, of course, and deliberation I chose ritalin. Let's just hit the fatigue directly. They actually aren't sure how it works, but hey it works so let's go for it. They know it affects dopamine receptors in your brain which are partially responsible for energy though, so that's something. It is normally used for ADD, but in people who don't have ADD it tends to have a stimulant effect.
And it did! In the beginning the headache was almost insurmountable once the medication left my system about 3-4 hrs after taking it. Taking another dose before that happened worked during the day, but at some point in the day I'm not taking it anymore so the headache was inevitable. Almost all medication has side effects, and they are always worse in the beginning. Sometimes they go away completely, other times they get less severe, sometimes they stay forever. I hoped this wasn't the forever kind and just kept going.
I swam in the ocean with my kids, went to the beach daily with my daughter who's learning to surf, I felt like I could push through the fatigue finally to get where I wanted to go a good portion of the time. It definitely worked.
This medication requires a lot of dose adjustment in the beginning to find the right one. Too much and I was sleeping all day! Too little had no effect and in the middle I felt ok but also extremely sleepy once it wore off ( 3-4 hrs). And while I definitely felt better and like I could "fight through" the fatigue to do a lot more than I normally can I still had it. If that makes sense. The fatigue was still there, the medication just took the edge off enough that I could overcome it. Just like pain medication, it doesn't get rid of my pain, but takes the edge off so I can function.
So, I wondered if one of the other medications might work better. I didn't want to settle when I had other options to try.
Reserving ritalin to come back to, I asked my neurologist for the other stimulant: adderall.
"But first there must be a tapered withdrawal from the first one and off of it for a week before starting the new one".
So, that's what we did.
Time was the main factor here, in addition to being back to my normal fatigue level. Experiencing this after feeling better for a while with the medication did show me again that it was working, so at least that was good news during those weeks. At least I now knew I had an option that would help me that I could come back to. Maybe it would help as much as I'd like, but my expectations may, just possibly, be a little bit higher than reality permits....I don't know.
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