nortriptyline Archives - Not Standing Stills Disease

My Liver Is Happy Again – And Other Updates

Posted on December 23, 2018December 5, 2021 by Grayson

It’s been a few months since I wrote some updates… or much at all on here.

Gussy snuggling under my teal comforter while we watch the Bucks in the background

I’ve been focused on taking care of one of my guinea pigs, Gussy. Since the week of Halloween, he’s been struggling with health issues. After trying a number of things, we discovered he had an abscess. He’s getting medicine twice a day as well as a lot of cleaning (thanks, diarrhea) and love.

You drop everything when a loved one is basically in the ICU, especially if you’re the one providing care. I’m finally getting back to taking better care of myself.

Liver, Nortriptyline, and Migraines – Oh, my!

Back at the end of October, I had to come off of my nortriptyline for a gastric emptying study. Since being off of that, my liver values have normalized. It proved to me that, 1) that med was sending my liver over the top, and, 2) it wasn’t doing anything for my migraines.

I’ve been able to control my migraines more by controlling my MCAS symptoms and triggers. That, and PT for my neck, anyway.

My heart rate has gone done since coming off nortriptyline, too.

MCAS

I certainly have been slacking on some of my MCAS stuff. The good news is that I have a lot of people reminding me to handle it.

My sensitivity to scents is a lot stronger than I really realized before. Things like deoderant are doing me in. I am, at least, being able to handle the reactions after the fact… for the most part.

GI

My gastic emptying study was a long day. Four hours of dicking around in the hospital after eating radioactive breakfast.

They found I have a borderline delay in gastric emptying. That means that I don’t have full-on gastroparesis, but I also don’t not have it.

Part of what I have to do now is work towards finding easily digestable foods within the low FODMAP label.

The other thing I have to consider is that my cholesterol is a little high.

Dental

Now that a new year is starting, I’ve got new dental insurance to – hopefully – address some more of the dental issues I’ve been dealing with.

Now if everything could start costing less…

My Scariest Rheumatologist Appointment Yet

Posted on July 23, 2018July 19, 2018 by Grayson

My health issues have kind of exploded recently.

My colonoscopy and endoscopy showed nothing about what my GI tract is dealing with. The mental health crud I’ve been facing isn’t getting much better. And, now, something scary is happening.

At my initial digestive health appointment, the NP mentioned that my heart rate was pretty high. That combined with things like dizziness were setting off her red flags. As it’s not her specialty, she suggested I follow-up with primary care.

A few weeks later, I had my IUD recheck and brought this up. That NP didn’t think it was a big deal as I always tend to run higher, at least in that health system’s records. “Specialists worry more,” she said, “because they don’t deal with this regularly.”

I ran late to last week’s rheumatology appointment. I made the mistake of going to the wrong clinic because I didn’t check my calendar correctly. By the time I got across town, I was about 15 minutes late but they were fine with that.

The MA goes to get my vitals and the machine says my pulse is 130. And it’s not calming down. She decides to come back at the end to check it. During the appointment, though, doc became really concerned. My heart was still racing incredibly fast. When I brought up that the machine during my endo/colonoscopy yelled at us for tachycardia, doc shot me a look. Her demeanor changed as she asked questions… and promptly ordered an echocardiogram and Holter monitor.

By the time the MA came back in, my pulse was still high but had calmed. The bigger problem at that point, though, was that my heart began beating irregularly. Instead of that traditional bumbum bumbum, I was exhibiting bumbumbum bumbum.

The MA and I went through my meds list to see if there was anything that might be causing heart stuff. Nortriptyline can do that, and so can Lyrica. A friend just had to go off nortriptyline because it was making it look like they needed heart surgery. Since we just upped that to 30 mg each night, I could definitely see it being the culprit.

But I’ve also been sitting with some scary feelings about what if this isn’t the case. I can feel my heart racing and, if I’m honest, I thought it was my anxiety causing this. As I write this, feeling every racing and irregular beat, I’ve been sitting for over half an hour. There is no legitimate reason for my heart to be so upset.

It’s scary. I’m scared. I worry about what this could mean for my future. I shouldn’t be a thirty-year-old pondering mortality, but here I am. My MA and I worry about if this could also be due in part to biologics – which haven’t been researched enough to truly know their side effects… And that’s especially true with Anakinra/Kineret and adult patients.

So, tomorrow morning, I get to have a heart ultrasound. After my appointment, they’ll give me a Holter monitor to track my pulse for the next 48 hours. This week is a rough one already with appointments I have – I also see ENT for a swallowing test and have my GI follow-up on Thursday.

Of course, I’m still dealing with several undiagnosed issues right now, too, including what we think might be Mast Cell Activation Syndrome (MCAS). Of course, that can bring with it cardiovascular issues which could explain my heart stuff, too. The arrhythmia and tachycardia my rheumy’s office witnessed are both telltale signs, especially along with allergic and dermatologic reactions I keep having.

For now, I’m placing bets that my heart issues are caused by medication(s) or MCAS. If not, though, I don’t know what will happen. I just hope the actual worst is not as bad as my fears lead them to potentially be.

New Potential Diagnoses, New Medications, and More Tests

Posted on June 11, 2018June 13, 2018 by Grayson

The last few weeks have been incredibly hectic. I will say, though, that’s hectic in a good way. After putting up with issues for a while, I’m finally getting them addressed.

photo inside a GI exam room with tan exam table and white pillow against a blue and tan wall

I feel like I’ve already perfected the art of spending time in exam rooms.

Neuro

My migraines have been getting worse again. Unfortunately, our insurance doesn’t want to cover much of my Maxalt. They only want to cover three fills in sixty days. That’s 27-36 pills. When I have to take two to kill a migraine, that’s not enough. It means that, instead of being able to take these pills and move on with my day, I’m still having to try to treat my migraines with other things.

It just doesn’t work.

My neurologist has upped my nortriptyline to three pills at bedtime instead of two. I’m really hoping that it helps. For now, it’s helping me sleep through the night more. I’ll take that!

MCAS

I finally got a response from my allergist/immunologist office. The pee tests I did for MCAS were mostly within normal limits, though one showed higher mast cell activity than the others. Since I’m still having what we think are MCAS symptoms, though, they prescribed me montelukast or Singulair. What it does is block leukotriene D4 from hitting leukotriene receptors. This is especially helpful in the lungs, but also helpful throughout the body.

After a few nights of this, I’m already seeing benefits. The biggest one is that my rashes are not showing up! My face, chest, and arms have been normal looking for a few days. I’m absolutely floored and thrilled.

It does make me wonder if my rashes lately have been more due to MCAS than SJIA. Notably, I haven’t had much of my odd undiagnosed symptoms the last few days, either.

K's hand with three green and white capsules (nortriptyline), one pink pill (etodolac), one white capsule with black writing (Lyrica), and one pink square pill (Montelukast)

Birth control

I opted to get an IUD in order to get off my birth control pill. The extra estrogen could be increasing the frequency of my migraines.

That got put in on Tuesday. The process was incredibly painful and I almost passed out and/or threw up. I’m still kind of processing it but, to be honest, it was traumatic. The strings have, at least, stopped poking my insides.

GI

I also had a GI consult on Thursday. It was a really thorough visit and the NP I saw was incredibly understanding. I was migraining while there and she was very patient with me having a hard time with some words.

After talking more about my history and some of the things going on, she is concerned that I may have a type of IBD instead of IBS. Things like waking up at night to poop and rarely being hungry or only eating three bites of something to feel full are apparently not normal for something like IBS. In order to rule IBD – or another digestive issue – out, there are a few tests we have to run. Next week, I get to collect my poop and bring it to them for testing.

At the end of the month, I’ll have an endoscopy and colonoscopy. It may be able to give us answers or, at the very least, it can rule out something more serious.

Unfortunately, we noticed that my heart rate has been faster for… a while now. Combine that with my lightheadedness and nausea, and the NP is concerned about my heart… which means yet another appointment I’ll have to make.

Funny enough, it’s that issue that I’m focused on… mostly because heart stuff could easily point more towards MCAS or something else. If I’m honest, that’s scary. I’ve spent several days recently contemplating mortality because that’s what I do best. It’s not been great for my mental health.

So many appointments

This has been a collection of a ton of appointments and calls. It means that I’ll have a ton of follow-ups coming up, too.

I’m tired. It’s exhausting to have to stay on top of busy providers, try to get test results, and wait for calls back. People don’t always understand how tiring it is. It’s definitely worse than having a full-time job. Hell, it is a full-time job.

Thankfully, today’s appointment is for our car. It’s nice to be on the caregiver side of things sometimes, even if it’s for an inanimate object.

Hopefully, getting my things addressed will lead to positive results. I just want to feel better physically, mentally, and emotionally.

black background with white and purple stripes and white text "Nortriptyline Update" and "not standing still's disease"

Nortriptyline & Health Update

Posted on March 5, 2018December 5, 2021 by Grayson

I’ve been on nortriptyline for a while now, but it’s been a minute since I last updated everyone.

At my most recent neurology appointment, we added magnesium and B2 to my meds. Both pills are huge, so that’s been a fun change.

photo of a left hand holding a variety of pills/tablets/capsules with a teal planner in the background with white text: "Everything is possible"

The yellow pill above is the B2 and the black is the magnesium.

The good news is the combination of 20 mg of nortriptyline and the vitamins has incredibly decreased the number of migraines I’ve had. I’ve even been able to go to areas with bright flashing lights and been okay for a while.

Unfortunately, it hasn’t actually helped my neuroWTF at all. I’ve had that nearly every single day for two weeks now.

A red jug in the fridge door next to wine, Gatorade, and other substances

A few weeks ago, though, I got a couple of allergy tests I needed. At the appointment, I also brought up Mast Cell Activation Syndrome (MCAS). As I went through many of my symptoms, the doctor – familiar with MCAS – thought there was certainly a chance it might explain my symptoms. Two of the urine-based tests are still going through testing, so I’ll hopefully know more by the end of the week. The tricky thing is that I may have this without the urine showing it. The good news is that we can still treat it as a likely diagnosis and see if upping my Zyrtec helps.

While I write this, I’m laying down because of these funky symptoms. They’ve gotten worse lately. Right now I’m numb (lack of sensation with some pins and needles) from the back of my head to my thighs. It’s an interesting thing to go through… and scary. It’s been a year now of pushing to see what this might be, and I’m nervous about how much longer it’ll take to find the right answer – and a potential treatment for this.

End of Year Health Update

Posted on December 19, 2017December 5, 2021 by Grayson

It’s been a while since I did a health update on here. Things are going… okay? As of last week, I was discharged from pelvic floor therapy. This week, I anticipate being discharged from neck/back PT as well.

Around Thanksgiving, I joined a gym. I’ve been working out 3-6 days a week, depending on how my body is doing. I know that when my body winds up being very numb, it isn’t safe for me to go and do much. Despite being on a prednisone burst, I’ve lost ten pounds in the last few weeks.

I had a follow-up with the neurology physician assistant earlier this month. I left unenthused, to be frank, and frustrated with the lack of care I’m receiving. The PA was more concerned about telling me to do things I already do and medication-shaming me than working with me around the very odd symptoms that reared their ugly head big time this year.

I find it alarming to tell a patient in distress that there are medications that can alleviate their symptoms but they’re on “enough already.”

Still, we added in B2 and magnesium which – when I take them both daily versus as needed – have helped with my migraines. This has had no effect on my odd numbness, though, as the PA assumed it would. This tells me that my odd symptoms aren’t related to my migraines (as she assumed) or that these levels aren’t enough to tackle the issue.

a variety of pills, capsule, and tablets of a variety of colors in someone's hand

It takes me about 20-30 minutes to take my morning meds now. It’s frustrating to have to sit with illness first thing in the morning for so much longer. That said, I know doing so helps me to process this stuff all better from a physical standpoint at least.

I’m wondering whether or not my odd symptoms combined with worsening rash could be something related to mast cells like Mast Cell Activation Syndrome (MCAS) more than anything else. I’m playing with the idea of calling for an evaluation. Honestly, I’m avoiding it because I can’t handle another doctor refusing to listen and shaming me for using medications to live a higher-quality life.

On the dental front, there are two crowns we have to do. One is on a front tooth and another is on a back molar that really doesn’t function. I’m not sure that it’s worth saving that tooth honestly. The cavities we’ve been playing catch-up with are taken care of now, thankfully.

My acupuncturist has been incredibly helpful, getting me to unwind more than I was when I was going to a clinic for this. He’s so much fun, too, and we talk a lot about sex education, impromptu consults, and more. I don’t think I’ve ever left every single appointment with a provider with a hug and renewed peace of mind like this.

I was lucky enough to snag three free months of Talkspace back when they were giving free months out for survivors of abuse. I haven’t utilized my therapist very heavily – partially because I always skirt the big things – but it’s been helpful to have. She’s great, only lives a few hours from me, and is incredibly similar to me in the best kinds of ways.

Over the last few weeks, we’ve dealt with Jaq having an upper respiratory infection for weeks (which can be fatal quickly for guinea pigs), major depression, apartment issues, increased rash, interpersonal havoc, and more. It’s been a lot to handle on top of everything going on in our country and world.

Nortriptyline: Day 40

Posted on October 10, 2017December 5, 2021 by Grayson

I’ve been on nortriptyline for forty days now.

I am seeing a very slight decrease in my migraines. When I have them upon waking up, I can usually combat them with caffeine. This wasn’t necessarily true before, and that’s why I sought out treatment anyway.

I’ve found that if I don’t sleep enough, that’s when I tend to wake up with a migraine. It’s hard for me to go back to sleep or take many naps. That makes catching up on sleep really difficult when I need some more ZZZs.

I suppose it doesn’t make it easy when I’m waking up with high pain up to five times each night, too. My alpha wave intrusions are getting worse. On top of that, since doubling my nortriptyline dose, I’m having terrible nightmares.

It certainly doesn’t make me want to sleep enough if I’m waking up completely bawling at a terrible dream involving the piggies or T or my sister. Super realistic nightmares suck.

At the same time, I’ve picked up from a productivity standpoint. With nortriptyline being a tricyclic antidepressant, my mood has improved and I’m getting shit done. It’s nice to feel like I can do things again.

Still, I don’t know that having nightmares and increased nausea versus slightly more tolerable migraines is acceptable for the long-term. Maybe there’s a better medication out there for me?

This is one point where I’m struggling with being an empowered patient. Perhaps it’s because I had to beg to get even this medication from a paternalistic old man. Maybe it’s because I’ve read too much about psychosis and fear withdrawal from this med. Regardless of the cause, this helps my depression but not really my migraines as much as I think something else could.

Since I’m going to ACR this year, I’m also less inclined to ask about switching medications right now. Perhaps this is something to bring up at my December 1st neurology appointment instead.

Guess Who’s Back? (rash is back)

Posted on September 22, 2017December 5, 2021 by Grayson

on left, picture of Kirsten with purple cloth across chest and rash on face, chest, arm; on right, a reddish text box with white text "Guess Who's Back (rash is back) Not Standing Still's Disease"

Yesterday was one of the roughest rheumatic days I’ve had in a really long time.

I woke up in extreme pain, with my hip feeling as though I had bursitis again. My knees and ankles were horrendously achy. It was so bad that I set up a ton of pillows, broke out the ice packs, and turned on my Oska Pulse.

All day, I was just in a lot of pain. It wasn’t until T came home that it got even worse – the rash hit full force.

Because I struggle with temperature regulation issues, I often get warm randomly. This was different, though. I knew there was rash. Listen, this damn rash is something I remember dealing with all my life. Sometimes I wrongly assume that I have it, but that’s pretty rare. It’s obvious to me when it appears. It hasn’t really popped up recently, though, because my disease has been well-controlled.

I got up and went to the bathroom, nearly crying when I saw just how bad my rash was.

It switched sides throughout the night, moving from my left to my right over about an hour. Soon, it was on my legs, too. Sleeping was hard, though not nearly as hard as when I was a child. I remember barely sleeping, tossing and turning in pain. This time, I just couldn’t get to sleep and then I was out quickly for a few hours at a time.

Not everyone’s rash itches or is uncomfortable. If I recall correctly, I think it’s under 10% (5% maybe?) who do have that… and I’m one. Hooray?

I’m hoping that this is all due to the quickly-changing weather we’ve been having. We had a horrid storm run through the night before with temps still near 100 at night. As much as I want to, though, I can’t exactly rule out that this isn’t from upping my nortriptyline, either. I hope that it isn’t, but only time will tell.

Nortriptyline Day 21

Posted on September 21, 2017December 5, 2021 by Grayson

I called my neurologist’s office the other day to update them on how the nortiptyline was working.

After waiting five hours for a call back, I explained that this was helping a bit but not as much as I’d like. I also brought up nausea I’ve been having with this medication – something that’s made the motion sickness I’ve had for a few years even worse.

I threw up several times the other day in a car. I’ve learned I really can’t sit in the backseat right now.

We decided to double my dose and see what happens. If the nausea gets to be too much, we’ll look at a new medication.

I have been able to be more productive lately, which is nice. I still am waking up with migraines, but they dissipate throughout the day – not always, obviously, but usually. I’m having to rely less on my Axon Optics. I love them but it is nice to not always have to have them on.

We’ll see how 20 mg of nortiptyline works.

Nortriptyline, Day 9 & Spine PT

Posted on September 8, 2017December 5, 2021 by Grayson

First, the nortriptyline update: The nausea is still strong. I spent all morning yesterday running errands post-doc appt while trying not to throw up. I’m still dealing with headaches – well, until this morning, because I finally got some real sleep.

My appointment yesterday was with my GP to talk about my bulging disc. She’s sending me for spine PT which starts on the 18th. If that doesn’t help in the next 4-6 weeks, we’ll talk again and consult someone about what else we might be able to do before moving to surgery. This means I’ll be doing pelvic floor PT and spinal PT at the same time.

She also gave me a new script for cyclobenzaprine. I used to take that regularly and then my former rheumy stopped prescribing it, and the newer one didn’t want to.

Of course, I had to sit through the ‘losing weight helps’ speech at my appointment. I’m so tired of hearing that, especially as I’m saying I can barely sleep, walk, and do anything. Like, that’s not the time to lecture me on my weight.

The cyclobenzaprine, even at a half dose, helped immensely. I was able to sleep last night, in my bed. It’s been weeks since I woke up in my bed at a normal time.

I even slept another few hours this morning.

All that said, my headache/migraine is easing up with the sleep. My back pain is becoming more prominent, though. I’m not too worried about that for now, especially since I only did a small dose of my cyclobenzaprine.

Maybe now that I’m able to sleep more, the nortriptyline will start working.

Nortriptyline, Day 5

Posted on September 4, 2017December 5, 2021 by Grayson

photo of wooden planks with mint green thin bars at top and bottom - in the bottom bar white text "Not Standing Still's Disease" - at middle a pinkish thicker bar with white text 'Nortriptyline, Day 5"

Last night was my fifth dose of nortriptyline. As noted previously, there isn’t expected to be much improvement until later on once the medication has been able to build up in the system.

The nausea is easing up a tad, though not much. It seems to be more recurring than constant which is an improvement. That said, after dinner last night, I nearly threw up everywhere.

I put the other half of my pizza in the fridge and decided it was a good time to get out my daily Kineret shot so that it could warm up. It makes the shot hurt a lot less and I wind up with fewer bruises and marks that way. We keep my meds in what would be the meat drawer in a normal household. This way they’re more insulated if the power were to go out, but they’re also always in the same spot and don’t get crushed if I drop a Coke can, etc.

I bent down, took out the box, grabbed a shot, and set it on the counter. As I bent back down to put the box back, I got nauseous. As I came back up – something that’s been giving me trouble lately anyway – I nearly threw up. Twice.

After a mad dash to the bathroom and sitting in front of the toilet for about ten minutes, the feeling passed and I was okay.

I definitely felt like I was on the verge of throwing up all night, though.

Whether or not this is med-related, I don’t know. I do know that my nausea has generally increased due to this med, but also that my GI tract isn’t processing food the right way. Since I had just eaten a real meal, it could be more due to that than the meds.

From a migraine perspective, I haven’t really noticed much improvement. I’m still waking up with some headache that may or may not improve after taking my morning meds and stretching.

I do feel like my mood has improved slightly. I can’t say whether that’s from the meds, the pain easing up, or the long weekend and spending more time with T.

On another note, my back pain has eased up a bit as well. I believe the EMG and nerve conduction study amplified my pain for a few days, a combination of laying on an uncomfortable exam bed for over an hour and my already angry nerves being zapped.

That said, I’ve also been moving in ways that are within limits my body is currently setting instead of trying to push myself so much. I could see that helping as well.