Withdrawal

Withdrawal

We always spend time talking about symptoms and how we get better. What we never address in illness and heath is what these medications actually do to your body. Take one away and suddenly your body doesn’t have it any more and it panics.

When you think of withdrawal the imagine that comes to mind is a thin, strung out gaunt person and street drugs. What we don’t think of is the average Joe, normal looking person whose going through all those same horrible symptoms. It’s not always visible. So what’s withdrawal from a medication like?
Well friends let me tel you
It’s hell

I go in a cycle, like most people, day one is hell. Every horrible side effect you can imagine happens, puke, migraines, gastro issues, nausea, dizziness, all of it. Day 2-3 it keeps up but to a lesser degree. Then we go on to the psychological symptoms on day 4-7. Think everything from confusion and spaciness to depression and hallucinations. But what’s really important it to know it will improve. All of it sounds terrifying and in the moment it sure as hell is; but then it slowly fades, every day is better.

Now withdrawal is a multi step process because a few things happen:
1. you are decreasing a drug and removing it’s contributing factors from your body- this means some thing is “missing” and your body now has to figure out how to use it or get it itself
2. Titrating down slowly is safer because you can have those symptoms but to a lesser degree and safely come off a drug while Allowing your body to figure out how to work on its own (think those steroid dose packs we all get for sinus infections, take a bunch day one then Reduce day by day
3. Even after you stop taking a drug, the half life of it can still affect you. Okay so what’s that mean? Well drugs hang out in your system for a while, the half Life is how long it takes for the medicines concentration in your body to reduce by half. Some drugs it’s 30 minutes, other times is weeks. Zonisamide [my 39 day cycling anaphylaxis adventure] has a very long half life of almost 3 days. This means that the built up effect (how much is in your system, how much has built up, and remained over time) is pretty large,  and it takes a long time to move out of your system. Don’t forget to consider that the built up effect, and that edema, adipose or fat cells, and other organs can hold onto cells containing trace amounts of the drug and can stay there for a while if your body isn’t flushing properly (and subsequently release when you do get them moving). Let’s add into that that those trace amounts can still linger and affect you for days if not weeks after you discontinue. 
4. The side effects are not permanent but they feel that way, and there can be lasting effects for a while, but permanent damage is not likely. 

Coming off any medication should be done under medical supervision (if we want to use the stereotype think about the dangers of coming off heroin here) as there are some dangerous side effects that can require medical attention. Sadly, few doctors are prepared or willing to go through this process with patients who are not in a drug rehab program or the hospital. It’s a long, slow, constant process. It takes hours and weeks, lots of commitment and time, and it’s stressful. Patients needs constant supervision and care from someone (which is exhausting) and it’s mentally exhausting for the caretaker as well as the patient. You can’t fix it or take it away for them and you have to watch someone suffer while feeling helpless. Unfortunately the solution for withdrawal is usually just putting the patient back onto the medicine. Or replacing it with another similar one.

I was the patient that could easily start and stop any medicine. Pain meds, opiods, antibiotics, steroids, muscle relaxers, you name it. But my body reached a breaking point and now here I am experiencing withdrawal.

I watched myself disappear. Literally In the thralls of withdrawal, plus my system wide shut down, starving from Mal-absorbtion, physically exhausted, and I was having out of body experiences watching myself fade to gray.That was my first psych symptom. Stopping the medication suddenly resulted in 72 hours of no sleep, vomiting, migraines, vertigo, horrible side effects, dizziness, fainting spells (and not the kind you see on tv- fading out was a better name because I would sorta just collapse, blood pressure drops, I can hear and see but I can’t respond.) And delirium from no sleep isn’t a nice addition. I was in a perpetual state of trying to find out if I was awake or asleep. I’d startle out of my sleep but not be able to move and have to lay there and really figure out if I was still asleep or not. If I was asleep and I tried to move, it would create panic due to sleep paralysis [what keeps you from hurting yourself in your sleep]. If I was actually awake, I could get up and be okay. I started having nightmares and night terrors (waking and sitting straight up heart racing and scared). The worst night terror was while I was asleep thinking both my parents were in the room with me and I woke up and crashed. The whole room swallowed me into blackness, I chocked on vomit that wasn’t there, a darkness swept over me and I felt my heart stop beating and I couldn’t call for help. I dropped into death. I sat straight up out of bed and cried for hours. I couldn’t get myself right. I was terrified. I saw the image and felt it happen again and again for days. Everywhere I looked I saw it again. That’s withdrawal.

I couldn’t go off to the bathroom alone. I needed help and would often fall or my legs would give out. That’s withdrawal

I had to monitor my blood pressure constantly and have my breathing checked all night by an exhausted parent because my breathing became so shallow and I was afraid I would stop breathing in the middle of the night and choke. That’s withdrawal

I had to balance taking new medications to control symptoms and new symptoms we couldn’t treat because of the risks. That’s withdrawal.

We spent days writing meticulous notes on every single symptom, side effect, interaction, experience, and timing of all medicine day and night to send to the doctor to review and tell us what was dangerous. Hours and hours spent trying to remember things and pay attention. That’s withdrawal.

Despite all of this going on, if you saw me in the street, I wouldn’t look “sick”, just like I’d missed a few nights sleep. If you tried to talk to Me, I’d sound like I was up writing a paper all night or out partying or just tired or maybe off my meds, but I don’t look “sick”.
I hadn’t eaten a full meal in 3 months, but I don’t look thin and gaunt (thanks edema and steroids). I couldn’t keep anything down due to dysphasia (swallowing issues) and was constantly dehydrated (thin liquids wouldn’t go down) but I didn’t look sick.That’s withdrawal.

If I told you I was going through withdrawal your first thought would be what street drug was I coming off, not what symptoms I was suffering. And that’s not your fault, it’s actually the war on drugs fault, medias fault, and educations. We teach children through media and school about drugs but only that they are bad and being strung out on them is dangerous. We don’t talk about the medicine you or your parents may take every single day and those risks. We say withdrawal is what happens when you stop doing illegal drugs and it’s dangerous and hard: But when do we discuss what it’s like for someone whose chronically sick who need to stop a medicine? We teach our children about mental health, and that it means medicines, therapy, treatments, and getting help. But we don’t talk about needing to change a medication or coming off of one and it not being forever. Think of situational depression. A bad circumstance happens and you’re stuck. You need an antidepressant to get you through that tough time. But it passes and things improve, how do you get off it? Where do we talk about the fact that your body’s been given happy chemical stimulants and now it’s going away and your body’s gotta figure it out solo? Where do we teach that it’s as much an emotional roller coaster as a physical one?
Simple answer- we don’t. We ignore it. It’s not relevant at the time, it’s in the future and not the current issue. 

Maybe the only time we even consider “residual” effects is with chemo.You tear down someone’s immune system and pump them full of toxic drugs and rip apart the body to kill the tumor cells. Their bodies have been damaged, and the effects last. Taste bud issues, neuropathy, pain, nausea, and so many more lasting effects. And there you are, miserable, with residual side effects and more medications to treat them and subsequently withdrawal side effects. It’s mass chaos in the body. But despite knowing this, we still treat it the same way and try to improve all the other aspects by prepping the body with nutritional advice and other doctors and specialists getting involved is helpful.We need that for ALL medical conditions. All medicines.

But how did we get to this point? Where medicines are causing problems and interacting with each other (all too common and not always caught by doctors despite it being a simple google search). Simple- over specialization. We tell doctors to specialize and specialize and focus on their department, not evaluate the entire patient and everything that’s going on with each patient. And so what we end up with is patients being left on drugs causing dangerous interactions and no advice. You see a GI specialist for a GI problem and they tell you to take a medicine. You improve and you don’t see the doc again. Do you stop taking the medicine? Who advises you on that? Your primary? But they don’t specialize in that area so they ask you if it’s helping and keep you on it. How the hell do you know if it’s working or if you’re fine without it?
One doctor puts you on a medicine, another chastises the choice. Does anyone communicate anymore? No, there’s no time.

So here we are, patients are stuck on medications they need to come off and no one can help them. No hospital will take you in unless you’re admitted by a doctor willing to treat you. Who has access to around the clock care to do this solo? Very few. Whose monitoring vitals? Are you a trained nurse? Is your significant other? Where’s the care for these patients? And amid this chaos we have people trying to handle that and another condition, another ongoing problem. They are left to hope their doctor caring for one condition can guide them the rest of the way. And sometimes they can and sometimes they can’t.

I want to see a new specialty. Doctors who focus on taking patients off medicines, helping them with interactions, treating co morbid situations. The only doctors out there for withdrawal are for addictions, not the regular patients stuck on this crap. 

We need this more than ever. And we need to re frame how we view sick, how we view withdrawal, and fundamentally how we view health.