Thursday, August 31, 2017

Nortriptyline, Day 1

square photo with thicker outline in black on the left side and white on the right side; pic in the middle is capsules in a pill bottle top, but distorted and unfocused; white text towards top middle says "Nortriptyline, Day 1" and bottom middle says "not standing still's disease"

As I brought up yesterday, my neurologist started me on Pamelor (Nortriptyline) as a preventative for migraines. It can help others when the right dose is reached. The pharmacist told me it could take over a month for this medication to start working. To help others, I wanted to document how this process goes. This won't be a daily update, but every so often.

I wrote the post yesterday after taking this first pill. It was recommended to take it at night as it can cause drowsiness.

By the end of writing that post yesterday, that hadn't kicked in as much as nausea had. It was really bad.

I spent time in bed, trying not to vomit.

I also couldn't get comfortable at all. I was laying in bed and snuggling my husband while breathing like I was giving birth on top of the nausea. The pain in my lower back was so severe that I thought I was going to pass out. I should've said something to T, but I physically could not.

There was no way to take my attention off the pain. It was so all-consuming - far worse than it's been recently.  That's scary on its own. I just set up an appointment with my primary care doctor to discuss what to do with this disc after messaging back and forth with one of the nurses.

As for the nortriptyline, I have not noticed any improvements regarding my headache/migraine-topia as of yet... nor did I expect to.

Wednesday, August 30, 2017

Today, I Had to Beg for Migraine Control

B&W photo of a hand holding three pills (two capsules and one tablet); underneath is a yellow-cream bar with black text "Today, I Had to Beg for Migraine Control" and under this a black bar with white text "not standing still's disease"

Today was my follow-up with neurology, which also happened to be for an EMG and nerve conduction study.

Over the last few days, I've been doing research around what might be potential differential diagnoses for what I'm facing. I did research, read research others sent me, and bounced ideas off other smart people. I put together a list of tests I'd like ordered, possible diagnoses, concerns, symptoms (new and old), etc.

And didn't get to do a goddamn thing with it.

The EMG was uncomfortable. Essentially, they're sending electricity up and down certain nerves in order to gauge how 'normal' nerves are functioning. Obviously, this results in the movement of limbs without trying to move. Both the test and the reactions are uncomfortable and not fun.

The nerve conduction study, also called the needle test, consists of sticking a needle where a nerve and muscle meet. Then, they have you move in a way that would stimulate these nerves while the needle gauges how well the nerve and muscle are communicating. For me, this was far more uncomfortable - maybe in part because some of this was done near my bulging disc and middle of my back.

All of this is done with no medication. The needle test winds up leaving blood spots all over, resulting in interesting looks if you go out afterward.

While this all was uncomfortable and even painful, this wasn't what bothered me the most about my appointment.

After going through these tests and them not finding anything, I asked my neuro if the bulging disc could be causing/exacerbating symptoms. He flatly dismissed this. 

He then returned to my chart and began to look at my medication list. He said he was leery of putting me on anything to control my migraines because I was already on 'too many medications.' I explained that I have multiple diagnoses, so obviously I'm on meds for these. He countered with concerns on contraindications and interactions. 

He literally didn't want to do the work to check which medications I could take. I had to make a case for getting my migraines treated. I literally had to beg for pain relief.

I explained that nothing I've been using to treat my migraines is helping anymore. I'm having them more often as well. This is what I was referred here for, after all, to control my migraines.

He relented, asked if I've been on a tricyclic antidepressant before, and said he would add one and then check the contraindications and interactions to make sure it was safe for me to take.

Yes, the antidepressant he prescribed can be useful in preventing migraines for people. However, I also wonder if this is some way to get a young femme out of his office and to stop annoying him. When doctors don't know what to do - or don't believe the patient is in pain - antidepressants are often the go-to drugs.

I find it odd, too, that he would prefer sticking me on a second antidepressant daily to working with a relief medication for when I do get migraines I can't control through other means. There is a higher chance that I could deal with a severe mental health issue here compared to other, lesser side effects with heavy hitters.

All of that, and I don't go back until December 1st. I'm supposed to call in a month to report back how the medication is doing, but that's it. No further tests around my nerve shit, and no more working down that path to a diagnosis for that.

I walked back to my car and cried. I'm very upset. It's just like my initial illness stuff in 1993/4 and getting a fibro diagnosis between 2010-2012. The whole thing just screams old white cishet abled paternalistic doctor dismissing young femme(ish) patient's invisible pain, and I can't live like this for too much longer.

I shot my GP/GYN a note and explained about the bulging disc. I also explained that I do acupuncture - a common first-line in reducing pain, according to this med system's website - and I wanted to see what else we need to/can do to deal with this. I've barely been able to sleep and, when I do, I usually wake up around either midnight or 5 am to move to the couch because of pain.

This whole day went to shit. I should not have had to beg for control of my migraines, especially when it's because a doctor couldn't pull up a goddamned color-coded alert in the MyChart system. It's not like he even had to look on like a normal fucking person.


I cried, drove to Target to get my new script (fawning at the gorgeous pharmacist like the queer newbie I am), and rage ate a large frozen custard with peanut butter cups. No, not the best decision, but something I needed to do for me right then.

And so was pizza because fuck cooking tonight.

No one should have to beg for pain relief, especially when it takes so long to even get in front of a doctor who can help. Period.

Monday, August 28, 2017

Research Mode: Expert

photo of a lab setup with beakers and test tubes filled with various colored liquids; under this is a white background with green text "Research Mode: Expert" under which is black text "Not Standing Still's Disease" and under that is a line of diamonds in the same green color as the other text

When I was little, doctors couldn't figure out what was going on with me. We had to find an answer and bring it to them. This seems to be a running theme in my life.

My recent "bladder cramps" (we think?) were investigated. Nothing odd showed up on my transvaginal ultrasound or in test results. *I* had to check back in with my GP (also an OB/GYN) and see if she thought pelvic floor therapy would be a good idea. After several days (and asking me to re-explain symptoms in my records from our last visit), she said yes.

Now, with another neurological test on the horizon, I find myself doing the same thing. 

[Book with a dark background and cells/biologic drawings on it; "Pathophysiology: the biologic basis for disease in adults and children" by Kathryn L McCance, Sue E Huether, Valentina L Brashers, and Neal S Rote]

Obviously, having a rare disease is tricky. Knowing more about my familial history of weird undiagnosable neurological stuff makes it extra fun. Naturally, I'm starting to do my own research on some things.

Because, again, running theme.

My latest MRI showed a bulging disc that was noted to be more severe in my records (that I received on Friday) than was listed in my test results. Instead of listing just that there is a bulging disc at L5-S1, it lists the following:

L5-S1: There is a broad-based disc bulge with more prominent far lateral components causing mild-to-moderate left and mild right foraminal narrowing. No canal stenosis.

Now, that makes it sound worse than a simple wear-and-tear or overweight-patient version of a bulging disc, right? I think so.

What is also important to note here is that the bulge is worse on my left side, just like anything else in my body. Based on my pain, I knew this already. However, it is somewhat bilateral (on both sides), which is important to note as well.

This also sounds much more like it could be contributing to my symptoms - and even potentially the "bladder spasm" stuff. Of course, neither my neurologist nor my GP/GYN have addressed the disc... which pisses me off. 

In addition, I've begun having headaches that start intensely anytime my head goes forward past a certain point. When this has happened before occasionally - mostly after being very physical - I've been able to ease them by relying on my chest for this movement as opposed to my head/neck. That's not the case now, nor is it only when I've been active.

It really sucks, especially on top of the other symptoms. That said, it does keep pushing me in the direction of more rare conditions like a CSF leak. To be honest, when my symptoms could be relieved earlier this year with being horizontal, I thought this could be a thing - and this can happen in the spine.

I should know more once I get my medical images and/or after my EMG and nerve conduction test on Wednesday. I'm hoping I can also start a medication for migraines, which should have been done already.


I'm not ecstatic about these tests. However, I know that they might help yield some answers. I'm just hoping the range of testing that lies before me won't also cause a ton of extra pain. I'm not equipped to deal with as much as I've been facing as is. Adding more in without adding in any actual painkillers might, well, kill me.

Not if I find the answer first.

Tuesday, August 15, 2017

Latest MRI Results

a photo of a one lane road in the middle of a body of water; white text at bottom middle "Latest MRI Results" and "Not Standing Still's Disease"

In my last health update, I shared about how I had an MRI coming up on what was last Friday. In reality, it was two MRIs scheduled back to back (HA!) - one of my thoracic spine and one of my lumbar spine. 

The MRI team was great. We talked about tacos, guinea pigs, and fun things to do in the area. More than that, they were incredibly caring and very helpful.

I took a Valium before the MRI and it worked much better than the last time. I was incredibly groggy and wound up sleeping for a good amount of the time I was in the machine. To be honest, I don't even remember how much of the time I was awake.

That was perfect - exactly what I needed since my head got to be in the most narrow, coffin-like part of the machine for nearly the whole time.

T and I went out for tacos at our favorite local place, and then I came home and slept for a few hours, waking up incredibly alert and ready to do things. In the middle of writing my last paper for my masters, I got an email about my test results.

My thoracic spine MRI came back completely fine. This part of the spine, for those unfamiliar, is between the neck and the lower back. My lumbar spine, though, did not.

"At L5-S1, mild broad-based disc bulge results in mild to moderate foraminal narrowing on the left."

Yeah, I had to look that up too, but I knew it wasn't great. The note said that these were 'degenerative' changes, though knowing my body this may not be entirely true. The short story is that I have a bulging disc, causing stenosis that is smooshing some nerves.

Now, the note from the radiologist in my test results says this isn't causing my symptoms. After doing my own research, I feel like this could be, though. Everything I've found discusses how back spasms can be a part of this - something I've had since 2012-ish but was told this was due to scoliosis that my physical therapist at the time and I found on my X-rays.

Anyway, the symptoms can include pain (duh), muscle weakness, pain along nerve paths, pins and needles or hot feelings, numbness and tingling in the extremities, and more.

The symptoms that worried my neurologist as I explained them were bowel and bladder incontinence that came up during my last big neurological thing. It's important to note, though, that having IBS can explain that in conjunction with all this. Think about it - muscle weakness and an already-upsettable GI tract?

My back pain is becoming more prominent. I think part of it is because I know this isn't something to dismiss as I was told to when it was 'just' scoliosis-related pain. Thinking back, the summer of 2012 is the first time I also had some of the neurological symptoms I've complained of recently, including issues with temperature regulation.

It could certainly be coincidence, but I don't know. We shall see. I haven't heard directly from my neurologist's office. I suspect I will sometime this week, though. If not, I know that my EMG coming up on the 30th is with him so we can talk more about things then. 

Monday, August 14, 2017

Review: THYNC Relax Pro #THYNCrelax

a photo of the THYNC box (black rectangular box with a white slash in the middle) against a light blue sheet; photo has been darkened and colors other than B&W aren't distinguishable; black text at top middle "Not Standing Still's Disease" and at bottom middle "Review: THYNC Relax Pro"

I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

When I got the chance to try the THYNC Relax Pro, I nearly jumped for joy! I had been looking at it already and was very interested in giving it a try. It's tricky to make things work when you're not working more than freelancing, though.

Earlier this year, I learned about how the FDA doesn't really regulate medical devices. It's a scary thing to think about. The nice part about THYNC is that they've done studies themselves. In fact, this device has undergone testing over the last FIVE YEARS. Throughout that time, it's been proven to be both safe and effective. 

All the testing makes sense when you learn that neuroscientists from universities like MIT, Stanford, and Harvard created THYNC. Check out some of the positive press they've gotten:
How does THYNC work?

THYNC box opened against a light blue sheet; cover is black with a white slash in the middle; next level has a white manual and the golden kinda-triangular THYNC device; bottom level has a soft carrying case packets with the gel pads for use

THYNC comes with the kinda-triangular THYNC device itself, this nifty connector that clicks into the device, and gel pads that go between the connector and your skin. Once you put it all together, it looks like this:

two pics together; on the left, the front of the device with a black tab coming out from the bottom attached to a gel pad, and you can also see my 'believe' tattoo with the L replaced with a blue awareness ribbon; on the right, the back of the device showing the connector attached to the THYNC and both gel pads; in both pics, I'm holding the device and the background is a royal blue Doctor Who Tardis fleece blanket

You then open up the app, make sure the two connect via Bluetooth, and select your mode. There are two modes - deep relax and deep sleep. 

Deep Relax

This mode should be used for at least 10 minutes at a time. It's great to use once daily or whenever you're feeling stressed. This is a very light vibration.

Deep Sleep

This mode should be used for at least 15 minutes at a time as you're nearing bedtime. When you start to get sleepy, take it off. This vibration feels a little harder to me, though that could be because of my personal adjustment needs.

Regardless of mode, the app keeps track and will provide you with trivia on stress and sleeping habits.

What's the verdict?

Remember as you read this that your mileage may vary. My body isn't your body, and my experiences may not be yours.

The bad:

I have a bit of a prominent neck hump from my health crud and years of not having a real bed. Because of that, it wasn't always easy to get the pads to stick well without asking for help. You should hold still when using the device, but also not be laying down, so that can be tricky as well. I have to stretch every few minutes or my neck and shoulders freeze up.

It isn't always as easy to use as I'd like, especially knowing that it doesn't always stay on my neck as easily as it might for others. When flying the other day, I wanted to pop this on. However, I was aware that, if I fell asleep using it or just moved the wrong way, I might lose the device. Again, this could be a just me kinda thing, but it's something to keep in mind if you have a neck hump as well.

There are times when the vibration is a little too much if my fibromyalgia is acting up, simply because it is a vibration-based tool.

If you close out of the app, you can't just go back into it to control the device again. You have to turn off the device and restart it. In fact, everything with the device's power is manual, which can be tricky with a small on/off button. I hope that future versions will have the ability to start the device from the app so that it's more accessible for those of us with hand dexterity issues.

Really, these are just things that need some tweaking - or things that would be helpful to know as you get started.

The meh:

I don't know that the sleep mode really helped with my sleep at all. My sleep tends to be sporadic and I usually wake up in pain several times during the night. This didn't change at all with using the THYNC, nor did I sleep longer in general after using it.

The good:

The relax mode is wonderful. I feel more relaxed and definitely more present. I suppose that's made easier by the reminder that this is what I'm doing right now, trying to relax. It has an added benefit that the vibrations also help my neck pain somewhat (as long as I have the settings right) which definitely helps with relaxation.

I breathe more deeply and focus more intently on the things I want to do.

Overall, I'm really enjoying using the THYNC Relax Pro. I think next I'll pair it with some of my favorite meditations from Buddhify and see what happens. We all know I need to relax more, so it can't hurt!

Want to snag one of these for yourself?

Visit THYNC's website! It's currently $49 for a 30-day trial. Note that you have to use an app with this which is currently available on Android/Google and Apple devices.

Monday, August 7, 2017

5 Ways to Avoid Getting Regular People Sick with a Chronic Illness

A few years ago, I was on some treatments that resulted in my picking up nearly every sickness going around. Of course, that means I've also turned those illnesses from regular-people-sick to antibiotic-needing-sick. In the last few years, though, I've made some changes and now the only thing I tend to get are colds! 


Today, I'm sharing some of my tips. 

1. Hand sanitizer

I have been traveling a good amount. When I do, hand sanitizer is a major go-to. 

I don't do well with washing my hands in a lot of public places. Don't get it twisted - I wash my hands. The problem is that I have temperature sensitivity. If I can't control the temperature of the water, my hands have some major problems. The same if there is only a dryer instead of paper towels.

I like saving the earth. I get why many places have dryers only. The problem is that this isn't accessible and then I pay for doing what I should and washing my hands.

Solution: hand sanitizer. 

It definitely helps when you're touching parking ramp door handles, taking public transportation, and tons more in public too.

2. Medical masks

Now, I don't always follow my own advice on this one, but I try to use medical masks when I fly for just that reason - especially during cold and flu season.

Let's be honest - we'd all hope someone super sick wouldn't be on a plane BUT flights are incredibly expensive. If I'm not well, I certainly can't afford to miss a flight. Even rescheduling is hard, especially if you're traveling for business reasons. It's silly to hold others to higher standards than we hold ourselves.

There are tons of medical masks out there. Vogmask is one company that people just love with cute designs that make it feel less... medical.

3. Get your shots

Get your shots to protect against the flu, pneumonia, etc. Make sure that you stay on top of these. I haven't gotten the flu once in a few years since I started getting immunized - despite working at a university and being in a clinic all the time.

4. Get some rest

One of the easiest ways to get sick is to avoid taking care of yourself. Stress plus hygiene issues plus chronic illness fun? It's a recipe for disaster.

Go practice some self-care. Unwind. Relax.

Visit this Pinterest board for some self-love and self-care ideas.

5. Don't share

If you commonly share things with loved ones (especially kids), it's always a good idea to limit that when there are sicknesses going around. It's not easy, I know, but it's a good thing to get out of the habit of doing.

What are some of your tips for not getting 'regular people' sick?

Wednesday, August 2, 2017

Health Update: Yet Another MRI

blue-ish pic of a window with raindrops on it and the moon is seen through it; white text: "Health Update: Yet Another MRI" middle and "Not Standing Still's Disease" bottom

Back in March, I had seen a neurologist in one health system. The entire department left and I got a referral to the department in the other system. Unfortunately, my initial appointment wasn't scheduled until the end of August.

I woke up Monday morning at 8 am to a call from neurology, though, to offer me an appointment at 8:30. I got up, took meds while on the phone, and sped over to the clinic. My primary doctor only referred me for my migraines, leaving out the weird neurological stuff I've been dealing with all year.

I made sure to share what was going on, though, on the off chance he would be as concerned as I was. And it paid off.

We honestly didn't talk very much about my migraines. I wish we had a treatment plan there, but I also understand that my symptoms would be more alarming. Doc ordered an EMG to test my nerves for the end of August. I also have another MRI on the 11th to check the rest of my spine.

I didn't even need to bring it up, but doc was upset that this hadn't been done before. He might've been more worried than I was, which was a nice change. Various illnesses and nerve problems can be found further down the spine and not always sit in the head and neck... including MS which keeps popping up as a potential.

We will see what the MRI shows and go from there. Since the EMG is done by the neurologist himself, that will be a follow-up appointment with him and I can bring up a treatment plan for the migraines.

These are all tests I asked my previous neurologist for before he left, and there just wasn't time or he didn't think these were necessary. It was so validating to have someone new share my concerns without me even having to state them. I'm really grateful that I was able to get in early and get things moving more towards a differential diagnosis.

For now, though, I'm off to D.C. to present on chronic pain and sex!