Medications and perspective

 All aboard the adderall train! 

I tapered off ritalin, waited for a week or so and began adderall. Adderall thankfully is only one dose per day so I don't have to worry about the ups and downs and timing of doses. And where ritalin was increased every few days, adderall is increased once per week. So there's a lag basically. It's odd because the first 3ish days the side effects were awful, bed ridden about to puke with a splitting headache and anxiety in my chest kind of awful. So much Dramamine involved…

I even asked M at one point "how many days are we giving adderall before we call it?" 

"As long as we need to." Ugh he's right. 

I was ok in the mornings to get the kids through school. But that meant single dad after 2 or 3 for almost 3 days. 

After 3 days they started to subside. Thank goodness because with some meds the side effects take weeks to level out. During the side effect days I definitely felt like I had more energy, but then it started to diminish the rest of the days last week. So, I increased my dose this morning. We'll see! I still need to increase 2 more times (so 2 more weeks after this one) to get to the recommended dose.

These meds are a roller coaster to my emotions also. Moving to Hawaii was one of our "last resorts", stimulants was also a "last resort" that ultimately, according to my California Drs, was out of reach. So now I'm refocusing my eggs into this one basket. Again. This is where the "what if?' train departs from. 

What if it's a fluke that I felt a little better?

What if adderall also doesn't work very well? What then?

What if this is just my life? 

Fun questions all of them. But the answer I have to give myself is in the wise paraphrased words of my husband M: "if this is it we'll deal with it. The important thing to get through this is your attitude." 

Told you he was wise. 

So again I am the "focus on the positive girl" . It's getting harder as the years go by, I'm not going to lie, but hey I walked my son to school and back a couple of days ago and halfway there today. In beautiful warm weather I might add. I'm coherent enough to write this right now. And most importantly we are all healthy in the face of this pandemic. Sooo, so what if I only get 4 usable hours out of each day? Life is pretty great really. It's all about perspective.

Medications and misery, part 2

 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.

Medications and misery

I wish I had a better excuse for being absent so long than "I've been beyond exhausted", and "my nerves have gotten too bad to hold my phone very long", but there they are. 

I feel like I should be documenting my journey of the last two months with new medications though. For those who have chronic illnesses, any chronic illness, medication becomes a part of your daily existence. Thyroid medication, insulin, blood pressure medications, antidepressants, etc. It doesn't have to be some big fancy rare disease. I believe the vast majority of older humans need something daily to keep them as healthy as they can be, so this is not unique to people with these debilitating chronic illnesses. Most people can relate. 

The thing that needs to be talked about more, by Drs and patients, in my opinion is how damaging and miserable medication changes and "trial and error" can be for weeks on end. Sometimes it's worse than the disease itself and you find yourself wondering why on earth you are doing this to yourself. 

For example, albeit a drastic one, in my 20s I had thyroid cancer. My thyroid was completely removed during two surgeries and I went through radiation off and on for almost 3 years. For those unaware your thyroid produces a hormone that regulates your metabolism, the energy with which your body functions. Each time I went through radiation I had to have close to zero thyroid hormone in my body. At that time 20ish years ago they did this by stopping your thyroid supplement pill, since I had no thyroid that means my body had none of this metabolism hormone. I would sleep 20 hrs a day, my hair would be brittle, my skin turned hard and bumpy, any food made me nauseous (and you must be on an extremely strict no iodine diet also), I was freezing all the time and I gained weight each time. 

Now what you may not know is that thyroid hormone takes minimum 6-8 weeks to adjust. Down or up, a little or a lot, you're looking at 6-8 wks minimum. Most people who have thyroid issues have experienced low thyroid numbers or high thyroid numbers. The thyroid test TSH is an inverse test- the more you have the less actual thyroid hormone in your blood. For most a low number would be a TSH of over 5, and a high thyroid hormone number would be less than 0.5 depending on the lab. They would get my TSH to around 40-50. They no longer do it this way by the way. Nowadays I get a handy dandy little shot that artificially raises my TSH to about 100, they take my blood to monitor the cancer markers to make sure it hasn't come back and then my TSH goes back to normal the next day. Isn't science amazing?! 

Anyway, so to get it out of my system completely you're looking at 3 or 4 months coming off of the hormone, the final 5 weeks being the absolute worst, then 3 days in hospital getting my radiation, and then usually "only" 2-3 months building back up to a normal level. These numbers move so slowly toward the end and have to be at a certain point so I would have to go in weekly then almost daily to see where they were, so they could say "ok this is low enough to give you the radiation let's go" ! I became quite close to my oncologist endocrinologist and his staff. 

So 3-4 months up, 1.5-2 months down, wait 6 months and start again. You can imagine the disruption to my life- I had to take time off university, leave my job, stay with my grandmother during the worst of it so she could take care of me…. BUT it wasn't the radiation that caused the disruption and physical misery. It was simply the medication. The medication that is extremely common in our population. My mom takes it, my dad takes it, my mother in law, my parents dog takes it for goodness sake. 

My point is that medication adjustments can be extremely difficult and sometimes worse than the treatment or disease themselves. 

So now in my next few posts I will take you through the latest adjustments and changes and what they have been like.