Compounded Medications

Finding ways to improve symptoms is tricky.
With medications, you have side effects, unwanted symptoms, reactions, and sometimes there are some additives that are unnecessary and can cause problems (like flavouring agents).
With herbal remedies, you have unknown or undocumented side effects, so it is harder to prepare. The research is lacking, and you have to really know how the ingredients react with your body in order to be confident using these remedies.

I am on a particular medication to help with my migraines prophylactically, which also helps me sleep.
My insomnia has been insanely frustrating. I find myself feeling absolutely desperate to fall asleep. When I do finally fall asleep, I sleep quite well (other than waking up in a sweat or needing to go to the washroom, but I tend to get back to sleep fairly easily). That presents an odd problem though - the longer it takes me to fall asleep, the more of the next day is wasted sleeping in.
Essentially, it is crucial for me to fall asleep within a certain time or the whole next day is wasted.

The medication seems to help really nicely - except there is a flavouring agent in it to which I am allergic.
This presents two problems:
1. I can only use it one or two days a week because I get hives on my face and chest.
2. I cannot use it enough to really tell how well it works. A prophylactic medication needs to be taken regularly, and to help me sleep it should be taken regularly too.

So I have been either sacrificing my sleep or my skin.
Neither of which is currently working.
I spent four hours trying everything I could think of to fall asleep (I listened to a meditation, I put on my oil diffuser, listened to soft music, put a facemask and put in ear plugs, warm milk, and even medication that I don't like taking very often). I finally relented... I took this prophylactic medication for the third day in a row and put on my Scary Story podcast to listen to some short stories until I was finally falling asleep.

Sleeping in far too late in the day and feeling entirely fatigued from difficulty sleeping, my first phone call was to a compounding pharmacy.
I wound up transferring this one medication to this new pharmacy so that they can take the base powder of the medication and put it into a capsule - without the flavouring agent.
Of course, there is an out-of-pocket cost, but if the medication works and no longer gives me hives, then it is 100% worth it.

Something to think about.
If you are having an issue with a medication, it may not be the actual medication itself. It may just be an added flavour-compound or something else that could be removed without changing the integrity of the medication itself.

The Lighter Side of: Migraines

Migraines are one of the worst and most all-encompassing episodes I have ever dealt with. If you catch them early enough, you can avoid the severe light-sensitivity, sound-sensitivity, stomach pain, vomiting, and persistent brain-crushing pain.
That is only if you have techniques to help ward off a full-blown episodes.

Although I deal with migraines fairly frequently, I am lucky -> I have responded well to a medication. When I take the dissolvable tablets, my migraine dulls to a simple throbbing within half an hour. When every second is excruciating, half an hour can feel like a lifetime.

The Lighter Side of Migraines is that the medication I take for them also helps me sleep.
Lately I have been dealing with some pretty significant insomnia, which is one of the biggest triggers for migraines. The less sleep I experience, the more frequent the migraines become.
It is vital for me to get a decent amount of proper sleep, which is really tough when you deal with painful conditions that make it difficult to find comfort, sleep disorders like sleep apnea and bouts of insomnia, and medication that can cause restless sleeping episodes.
Lucky for me, though, my migraine medication will almost always trigger a more restful sleep.

So I sit here, feeling my migraine become just a little bit worse by the minute, sitting in the dark, removing the squeaky toys away from my puppies, hoping to hang on long enough so that I can take my migraine medication right before bed.
Maybe I can get some good sleep and avoid another migraine tomorrow!

The Lighter Side of: Sleep Issues

Sleep issues are normal for anyone with chronic illness. They can range from too much sleep, not enough sleep, insomnia, nightmares, hallucinations, sleep apnea, and every other problem with sleep you can think of.
It's not so bad dealing with one of these issues, but I find the hardest part is that you can deal with every single one of these varying sleep issues in an unexpected manner. There is not necessarily a pattern with sleep problems.

Just because they are considered an 'expected' part of lifelong illness does not mean that these issues are simple. It is a continuous struggle. How can you plan anything ahead of time if you have no clue whether or not you'll be able to sleep at all that week... or if you'll be awake at all that week?!

The Lighter Side of sleep issues is that you eventually learn a lot about yourself. You learn what it feels like to function on half an hour of sleep. You learn how much sleep your body will require after certain levels of activity. But the best part, the best part, is that you learn to have an appreciation for great movies, books, or audio stories.
When I can't sleep, I tend to watch movies. I put a movie on, or a scary story podcast to listen to, and I get into a storyline, while allowing my body to get the rest that it needs, even if my mind never reaches REM sleep.
Sure I may suffer from permanent dark circles and I never feel fully rested, but that's just part of the package, so why not indulge in something enjoyable when a symptom is plaguing you.

I remember being in University and suffering from severe insomnia because of medications that were keeping me alive. Sleeping 30 minutes a night is not something that can be maintained, and it does not end well, but during those months I was able to be very productive. I would dive into research projects, or essays, or I would find a 24hr gym.

Always remember that making the most out of a difficult situation does not make your suffering less legitimate. There will be people who see you pushing through your worst symptoms and automatically think that you have it easy.
The truth is, they say that a true artist will make their art look easy - like anyone can do it. If you are suffering, truly suffering, with daily pain and a list of painful and frightening symptoms, and people think that you are well, that means you are brave. I mean, every single one of us is brave in our own way, but to take on an excruciatingly difficult illness and have people believe it's 'not as bad as it sounds', maybe you're simply an artist and are making the disease look easy to handle.

Random thoughts from someone who can't currently sleep.
Sorry if it came off as ramblings.

The Lighter Side of: Nausea (Part 2)

I have a lot of nausea... all the time. Allllllll the time.
Luckily I have medications that work well overall and some other alternative options that can help (like peppermint essential oils, adding cinnamon to teas and warm drinks, etc...) but all of that only works part-way. Even on my very best days I still need Zofran, Gravol, and I continue to have a tough time moving too quickly, getting dressed, or having a shower without having to sit down from overwhelming nausea.
Add in some medication changes or new regimens, and it results in dry heaving (at the very least). Last night was one of those nights. I am currently on an antibiotic that has an adverse interaction with Zofran, so I cannot take the latter right now. That means my sleep has been interrupted (if I fall asleep at all) by intense nausea.
Now because I was wide awake, rocking back and forth in bed, doing whatever I could to distract myself, I decided to throw on a movie and watch some Netflix. I watched this impactful film called Brain on Fire. I highly recommend this movie. This movie hit so close to home that I am kind of in a funk today - it hit me. I was surprised by it.

The Lighter Side of: Nausea is that it encourages me to find new distractions and leads me to new discoveries, like movies I may not have ever noticed!

The Lighter Side of: Insomnia

I don't even know why I cannot sleep.
I did not sleep well last night either and nearly fell asleep standing up this afternoon. I resisted the urge to nap, though, because I wanted to be able to sleep tonight.

As it stands, it is currently 5am and I have yet to sleep.
I am sure there are lots of reasons why my body is keeping me wide awake. The hives all over my face count for one reason. Recent changes in medication counts for another. Too many things on my mind is a clear reason. Maybe being over-stimulated while I was participating in art therapy today? Or maybe it's the bloating, the pelvic cramping, the swollen chest. Or maybe it's just from being hungry (I am trying to rein in my eating habits a bit... I have been baking a little too much lately and it is fairly visible).
I don't know.

Here is The Lighter Side of Insomnia:

I am super productive in the middle of the night!!
I used to be a night owl, so this is my time of the night. I had fun trying out some painting projects, I read through about 20 chapters of the new book I just picked up off of the shelf. I did some posting, I did some stretching, I am clearly writing a blog, I went through an updated list of priorities and projects. I also managed to go through some videos of music and schedule them to be posted over the coming months.
Today was productive! Tonight was especially so.
Thank goodness it is kicking me in full force over a long weekend and not the night before any important appointments.
Tomorrow I am planning on going and getting some Benadryl for these damn hives anyways, so I *should* manage to have a better sleep tomorrow night.

Happy weekend!!

Sleepless Nights

I have had some pretty intense insomnia lately.

Of course, like anyone, sometimes I stay up too late on purpose... I get caught up in a tv show, I browse social media, I stay up reading long past the point of becoming tired...but lately it has been all over the place.
I am too overheated, my pain is too high and I simply cannot get comfortable, I am thinking too much or have too many things to do, or I am just not tired. I stare at the ceiling, I very literally drum my fingers on the bed in musical patterns. If it is really bad, I will just give in and get up and do something productive.
The last few days though, wow, I have been out-of-it, emotional, drained, even lightheaded. Then when I try to sleep - NOTHING! I sit there and cry because all I want to do is have a restful night's sleep, but my body or mind or something is preventing it.

Right now for instance: I spent 2 and 1/2 hours tossing and turning. Wired. I can barely keep my eyes CLOSED! So I try writing. I try listening to spa music. I try everything. I even try medication to help me sleep! Now it is after 4am, so I know that the rest of this Saturday is going to be even tougher than the Friday was! I am going to feel emotional and pissed off and like a zombie. All day. I want to punch a wall! I want to cry! I want some goddamn rest!

What do you do when your body absolutely refuses to allow you to sleep?

Equipped for Little Sleep

Since I was 14, when I was diagnosed first with Ulcerative Colitis, I have had a ton of sleep issues.
Back and forth between two extremes, I have had almost every kind of sleep problem in stages. Sleeping too much, complete insomnia, hallucinations, sleep apnea, sleep paralysis, night terrors, feverish sleeps, light sleeping, sleeping too deeply, partial coma sleeping (due to my the sleep apnea), and probably 20 additional issues at one time or another.

So when we brought a new puppy into the house, while I was worried about getting run down too much and my health really taking a turn, the relatively sleepless nights are nothing new.
In fact, it's kind of nice to have sleep issues from something other than health problems. Having a new little being depending on us for every little bathroom break and him being scared of the dark is an adorable way to lose sleep.
Don't mistake me though, I have my snapping moments when I just want to fall asleep, but overall I think my illnesses have prepared me for interesting situations like adopting a new puppy.

So... thank you illnesses...?
Preparedness is a good thing, even if it's from negative experiences.

Wide Awake

I am lying here wide awake.
Completely wide awake.
So much so that I looked at my pills to make sure that I had taken all of them...

Every day for the past week or so, I have been nearly falling asleep sitting up by 8pm. Any issues with sleeping have had to do with waking up in the night, either from pain, trips to the bathroom, hot flashes, night sweats, teeth grinding, or nightmares. Never because I was not tired.
But here I lie, properly medicated but not tired at all.

If it was any other night, I would simply move to a different room and watch a movie, read more of the new novel I am currently reading, or maybe even work on some of the smaller projects that need to get finished for the wedding. However, tomorrow my day is packed. I have two appointments plus a trip to the pharmacy. For me that is a very very busy day and I am going to be in hella pain from it.
So, as much as I would love to catch up on projects or PVR'd shows, I really should continue to lie here trying to sleep...

Zzzzz
Think sleepy thoughts.

Sleep

Sleep has always been a bit of an issue for me since I first became ill.

At first it was pain and bathroom breaks. I would be up several times throughout the night racing to the washroom and I would doubled over in pain for the most part.

Then the side effects of medications were added to the mixture. Prednisone was the catalyst for so many issues with sleeping. It started with basic insomnia, then the nightmares, night terrors, and the racing heartbeat started. Have you ever tried sleeping when your heart rate is above 100bpm? Pretty tough to relax, especially when there are so many other factors working against you.

Those night terrors went from pretty basic to all-encompassing fear. Suddenly I needed to do everything I could to stop myself from even having the slightest cat-nap. Those terrors were so vivid that I could not handle them - emotionally or psychologically.

Then the hallucinations started. Small at first, seeing a spider in a corner that wasn't actually there. Trying to pick up a towel that had fallen off of the bathroom counter, that wasn't there at all. My eyes playing tricks on me, seeing bats in my bedroom or other critters. But it got worse. I began having phone conversations that weren't actually happening. I saw a friend standing in my kitchen cooking while we had a conversation, only to blink and be standing in the middle of the basement suite all alone.
That escalated to daytime hallucinations. Speaking to a substitute teacher in the middle of my high school - who did not exist. Soon I had to ask for help from friends deciphering whether what I was seeing, hearing, and who I was speaking with was real or not. I had to verify with people on whether or not we had had specific conversations. I saw green windows in the middle of someone's front yard in the grass. I stopped for a pedestrian using a crosswalk, only to realize that the pedestrian was only in my mind. Not only was I terrified to sleep, now I couldn't drive either. I could not trust my own senses.

As if insomnia, night terrors, hallucinations, a racing heartbeat, bathroom breaks, and pain weren't enough...

The sicker I got, the more issues I developed. I started grinding my teeth when I DID happen to sleep. I would sleepwalk and find myself in the living room, or the kitchen, and several times on the bathroom floor. I would yell in my sleep. I would flail. I would start shouting in languages no one could pinpoint.
Then, of course, came the 'common' symptoms of having an Inflammatory Bowel Disease. Soon I needed mattress protectors and other embarrassing supplies.

If I don't take certain medications to help me sleep, I will sometimes suffer insomnia, often for weeks at a time. But when I take the medications to help me sleep, it feels like a medicated sleep and I never quite feel well-rested. And then there is the energy rollercoaster... where often for months on end I will suffer the complete opposite side of the spectrum and I will be sleeping nearly 20 hours each day and can never quite get myself to fully wake up.

Right now things are much calmer. I still need help getting to sleep sometimes, and still go through bouts of insomnia (like right now). I hallucinate much less, I haven't walked in my sleep for a couple of years, and my nightmares/night terrors occur every few weeks instead of every single time I close my eyes. I think a major part of this improvement comes from feeling safer. The extra supplies are needed every couple of months, unfortunately, my heart still races, the nausea & pain & bathroom breaks remain frequent, and I still grind my teeth if I am extra sick, but at least I am not so paralyzed with fear that I purposely prevent myself from sleeping.

When I am able to sleep soundly it is glorious.

I have a complicated love/hate relationship with sleep... and sometimes I need to force myself to stay awake for so long that my body finally just gives up and allows me to pass out without extra medication.

I think my body will finally let me sleep now... at 6:30am... after my Berinert treatment.

Happy Friday.

Fatigue Friday.

Bright Sides of Not Sleeping

I have been having some pretty major difficulties sleeping, as I have mentioned several times lately.

My choppy sleeping habits are usually due to bathroom breaks, pain, restlessness, itchiness, increased heartrate, and a general increase in body energy caused by Cosentyx. Now, this isn't the energy that allows me to be more active necessarily, but more like an unwanted coffee rush that keeps me up at 3am.

With all of that said, there ARE some benefits.
A) If there are specific things on my to do lists that I can accomplish without making much noise, I tend to get those things done at all hours of the night.
B) Afternoon siestas are always pleasant - even if I have a 'sick sleep' and wake up feverish and disoriented.
C) Due to constant breaks in my sleep, my hips and joints don't get quite as stiff. (Always itching and shifting and getting up to go to the washroom cuts down on pain during the day).
D) It sure makes me appreciate the nights when I DO happen to get a full night's rest.
E) Extra reading, extra research, extra time.

So sure, going on almost 2 months of sleeping only about 3 hours a night can make a person frustrated, irritable, and go a little crazy.... but as long as there are some upsides, I can deal with it.
Plus... it could always be worse!! Prednisone made it so that I only slept 20-30mins per night for 8 months. I was certifiably nuts after that much time with that little sleep. Right now I am far from that.