Category: migraine

9 Helpful Gifts for Your Disabled Loved One

Posted on by Grayson

'9 Helpful Gifts for Your Disabled Loved One' written against a wooden background with wrapped presents

While I normally don’t talk about what gifts are helpful for those of us living with disabilities or chronic illnesses, I wanted to break with tradition this year and share some of my favorite gadgets and gizmos.

What changed my mind? Well, I’ve spent the last few weeks taking care of one of my guinea pigs. He’s been dealing with inflammation, pain, and an infection since the week of Halloween. If I could, I would love to get anything and everything that would be able to help him get lower pain levels.

This post contains affiliate links. That means I may monetarily benefit from you purchasing anything on this list. That said, payment for affiliates never comes at your expense. I also would not be promoting anything I didn’t personally appreciate, agree with, or review.

 

Benepod

Benepod is a new type of contrast therapy device which utilizes both hot and cold simultaneously to fight pain. By applying both hot and cold at the same time to a particular point on your body, the Benepod engages your bodies natural healing abilities by introducing a sensation known as the thermal grill illusion.

This device is used with a USB-C cable and must be plugged into a power source during use.

The research for the Benepod started back in the 1990s, meaning the company has been working hard at improving the device design to bring us the best possible one.

You can read my review or snag the Benepod on Amazon.

 

lotion bottle

Fay Farm CBD Rejuvenation Lotion

This lotion contains CBD, essential oils, and even magnesium. It leaves the skin happy and healthy without the greasy feeling a lot of powerful lotions can leave behind.

You can read my review and snag this in 2 oz or 8 oz.

 

 

Tens Unit screen lit up blue

Tech Care Pro TENS Unit

I’ve tried a number of TENS units, and this is the best one I’ve found for my own pain. The unit itself is light, compact, and easy to use. While it doesn’t have a pause button, it is powerful and I’ve never had to use it on medium levels at all.

You can read my review and snag your own on Amazon.

 

Oska Pulse with box, charging cable, and strap

Oska

The Oska Pulse has the cutest name backstory involving helping a koala recover from injury.

The research is there that Oska works – they have a ton of journal articles and research on their site for your perusal. It’s much more a device for preventing pain than treating immediate pain.

You can read my review and SAVE big! For the rest of the year, Oska is on sale for $344 if you use the code NSSD here.

 

Image result for quell

Quell

While my review was on their first edition, the new model is 50% smaller. It’s comparable to the size of a credit card now, making it less obvious that you’re wearing something on your leg. It has more power and more intuitive – it can adjust power on its own depending on your body positioning.

You can read my review. The code HOLIDAY30 saves you $30 off the Quell starter kit for the rest of 2018 here.

 

axon optics box with glasses case

Axon Optics

I would not be alive if it weren’t for my Axon Optics and, no, that’s not an exaggeration.

My migraines were so awful over the last year that I was in a really bad place. My glasses were one the one thing that helped me get through my day. They help filter out some layers of light which have been shown to cause or worsen migraines. While these may not work for everyone, they’re a must – especially for those of us who stare at screens all day.

You can read my review and snag yours on Amazon.

 

selfie of K with short black/brown/purple hair sticking up; they have on a brown paisley Vog mask

Vogmask

Thanks to Kenzie, I got my first Vogmask. As I’ve started to remove allergens from my life due to MCAS, it’s become incredibly important for me to have a mask on me at all times. The Vogmask is compact, easy-to-carry in my bag or pocket, and look snazzy.

You can get yours from Amazon.

 

FaSoLa Portable Weekly 7 Days Pills Organizer Case Round Medicine for Travel Drug Holder

FaSoLa Pill Organizer

I love this round pill organizer! I put all of my emergency medications in them – and, yes, I have seven now. It’s compact enough to fit in my bag, but big enough to hold what I need. Plus, you push the button and the circle advances to the next compartment.

You can snag this on Amazon or at Walgreens.

 

Books

I love reading. While I haven’t read all of these books, they’re all sitting on my bookshelf waiting for when I have more time.

  • Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine | Amazon
  • Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain | Amazon
  • Backbone: Living with Chronic Pain without Turning into One by Karen Duffy | Amazon
  • When Doctors Don’t Listen: How to Avoid Misdiagnoses and Unnecessary Tests by Leana Wen & Joshua Kosowsky review | Amazon
  • Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery | Amazon
  • Sick: A Memoir by Porochista Khakpor | Amazon
  • A Disability History of the United States by Kim E Nielsen | Amazon
  • The Ultimate Guide to Sex and Disability by Miriam Kaufman, Cory Silverberg, and Fran Odette | Amazon

Of course, gift cards and quality time are always appreciated, too.

Looking for more chronically helpful gifts? Check out this list I curated on Amazon!

New Potential Diagnoses, New Medications, and More Tests

Posted on 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.

drawing of a femme in the background with a pink text box and white text: " Migraine Relief is a Beautiful Thing " and " Not Standing Still's Disease "

Migraine Relief is a Beautiful Thing

Posted on by Grayson

Back in mid-April, I finally had a good appointment with my current neurology office!

After months of begging for migraine control, I went into this appointment prepared to issue an ultimatum. It felt clear that they didn’t care enough about my quality of life to give me medications that I need. I’ve been through the migraine treatment ringer in the past – this isn’t a new path for me. Telling me to get more sleep when I’ve been dealing with painsomnia since kindergarten.

When I walked in, I was fully prepared to give this schpeal I’d rehearsed in my head for two days.

Instead, the NP came in and asked how things were going. When I was done sharing my migraine frequency and details, she just went “Let’s get you some meds.”

It’s great to have a positive ‘the fuck?’ lately. Still, I’m really frustrated that it took so long for them to give me actual medication. My quality of life has sucked for a while around migraines. I try to push through, but I always pay for it. Why do I somehow have to prove it to providers by having to live in hell?

I’ve had rizatriptan for just under a month. She prescribed me 9 pills a pop and I’ve already picked up a third fill. In the last few days, I’ve had to take a few of these.

It’s absolutely life-changing.

I can’t frankly put into words how much I appreciate the ability to have more control over my health. To take away some of the unpredictability, it gives me back more confidence. I’m more able to participate in events and get shit done.

It’s incredible.

On top of that, those 9 pills are only five dollars. To think that $5 and jumping through hoops was keeping me from getting relief is bothersome at best.

Here’s to fewer migraines!

End of Year Health Update

Posted on 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 9 & Spine PT

Posted on by Grayson
photo of a lightbulb hanging down with a white line down the right side and a black box on the bottom with white text: "Nortriptyline, Day 9 & Spine PT" and "Not Standing Still's Disease"
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 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.

 

Nortriptyline, Day 1

Posted on by Grayson
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.

 

Ugh

Posted on by Grayson

I feel like I am having the worst day ever.

I couldn’t sleep last night because of a killer migraine. Who knows how much actual sleep I got, but it wasn’t much. Of course, the migraine had to set off my wisdom teeth too, so that made my night/morning that much better.

That finally stopped, and now my fingers are hurting like crazy and spasming a bit again, despite my muscle relaxants.

Oh yeah, that was pretty much all my primary care doc would do for me – muscle relaxants & new migraine meds. I didn’t try the latter, but we’ll see if they’re better than imitrex.

The best part about all of it? She doesn’t understand why my rheumy wouldn’t handle pain meds either. Apparently, she’s going to give him a call. But that’ll just result in him telling her to send me to the pain management clinic, which will be crazy expensive and take forever to get into.

Oh well, I tried.

Also, I found out I didn’t get my fellowship that I applied for. At this point, I’m ready for a break from school and would like to just exist for a while. We’ll see what happens.