Here is a little story about why I quit my medications. I get questioned by people all of the time about why I quit my medications and how on earth I am getting by without the drugs. Well, honestly I enjoy being able to think and on the medications I could not think. I was still in pain, but I was an empty shell that lost myself. These medications made it where I couldn’t do the basic things I had done my entire life, I couldn’t problem solve, my reaction time was so delayed that I had to quit driving. I couldn’t remember anything at all. Even off of the meds I still have lingering effects and those will probably be with me forever. Pills for conditions like mine are not a cure or even a treatment really, they are a band-aid.
Fire still consumed me.
I Quit My Medications (almost all of them)
I continue to take one prescription medication right now as well as a rescue medication. These two medications do make a difference in my quality of life. Let’s make it clear that I am not anti-medication. I am not anti-pain medication either. If I need a medication I will certainly take it, but what is the point of taking the ones that are not helping me at all and only making my life harder to live?
Before I was diagnosed with anything, I was already prescribed many medications. In fact, my first neurologist, who had no idea what was wrong with me loaded me up on so many medications that I was pretty much a drooling zombie. Keep in mind, these were not pain medications at all. They were antidepressants, antiepileptic, antispasmodic and some other junk that combined together took almost every bit of who I was away.
So Many Medications
During my time on the road of many many meds, I never took pain medication. I only had pain medication while hospitalized, in the ER or after procedures just like anyone else would. I had this fear of taking them and that they would eventually quit working and then I would be screwed when I really needed them. So instead, I worked on myself. This meaning that I knew I had to adapt and adjust with the diseases. Quitting my medications was probably one of the hardest things I did.
There were many different meds and combos of meds over the years. So many meds that affected my brain. I am only going to talk about a few of them here because there is really no reason to cover every single medication I have ever been on. Some were easy to wean off, but the heavy hitters took about a year for me to wean off of safely and it was still so very hard. Weaning fast off of medications is never a good idea and quitting cold turkey can be downright deadly. Trust me, I know.
I am not a doctor and I do not have any sort of medical degree. My story is only my story and not medical advice.
Cold Turkey Almost Killed Me
Several years ago, probably at least 10-12 yrs, (I can not tell you exactly because a lot of the memories are gone) I was on Cymbalta. A medication that was super expensive, I was on it for its off-label usage, not as an anti-depressant, although it did help me to not care about things so much, which can be a good and also bad thing. It wasn’t helping me in the way we had hoped it would. It was too expensive to continue if it wasn’t helping the way we needed it to, so I quit it.
I quit this medication cold turkey, I could not afford to get the prescription refilled in order to taper off of it slowly. It was one of the worst things I have ever done. Quitting a medication, especially an anti-depressant, cold turkey is dangerous. Very dangerous.
I Wanted To Die, Put Me Down Like a Sick Animal
I thought I could handle it, it would be no big deal. Truly, I wanted to die. I thought that everyone would be better off without me. I thought I should be put down as someone would do for a pet that was in pain and dying.
That was not me because I like being alive. Pain sucks, being sick sucks, being depressed sucks, but ultimately I love being alive. Opting out of life is not who I am, but at that time coming off of those meds that is exactly what I wanted to do.
Thank God that someone noticed. Someone realized that I was not myself and that I was saying some weird shit. With the support of people that love me, I made it through. However, many people are not that lucky and a cold turkey drug withdrawal will kill them with side effects, or by altering who they are so drastically that they kill themselves to escape the awful torment.
Many years and many drug combinations, enough was enough. I was on a drug called Gabapentin for many years. I often see people say they are on the “highest dose” of Gabapentin. They forget that the highest dose recommended is referring to on-label usage. Using this off-label for nerve pain takes that threshold away and the dose can be much higher.
I was up to 5400mg daily when I said enough. Gabapentin never made my sleepy like it does the majority. It did turn the volume down on my nerves for a long time and that was helpful. But eventually it would stop working and we would up the dosage, that led to the high dosage I mentioned. I started noticing the damage that it was doing to my body and my brain. I was slow, I couldn’t think, I couldn’t drive, I wasn’t me, and I was still in awful pain. My thought was why would I take it if it isn’t helping anymore and doing so much more damage. There was no reason for me to continue this medication because it was no longer working for me.
They No Longer Worked, So I Quit My Medications
I was also on several other medications with this one and I was still in awful pain, my illnesses were getting worse. It was as if I was not treating the illnesses at all, but making myself even more sick with other symptoms caused by the medications. I decided to quit my medications because of this. I planned it out and took an entire year to wean off of my remaining medications. None of them were crucial for survival and none of them improved my quality of life.
To quit my medications I needed to be very careful and smart this time. A lot of meds can cause some serious withdrawal issues. Especially those that create some of the chemicals that your brain is responsible for making. My body needed to realize that it needed to go back to work, that these pills were no longer going to be taking control of things. This needs to be done under the supervision of your doctors.
Slow and Steady
I did a very slow wean working on one medication at a time. The one that took the longest and was most definitely the hardest was the gabapentin. I am not going to go into all of the medications I was on and off throughout the years because it doesn’t really matter. I just want to talk about why I quit my medications and how my life has improved since doing so.
Gabapentin caused me some of the worst withdrawal symptoms that I had ever experienced. Withdrawal symptoms lasted for what seemed like (and probably was) months after I had completely quit. I have very little memory, huge chunks missing, but I can tell you that I felt like I had no control, even with the very slow wean. This isn’t something that anyone should do on their own. Your loved ones and your doctor need to know and need to be there to help you.
What Has Changed Since I Quit My Medications
So much has changed since I quit my medications. I am finding me again, it has been a few years now and I know my head is definitely more clear. My body has adjusted and my quality of life is much better. I am in pain, but I was on the medications as well. My life may be limited by my illnesses, but my brain has much more function after I quit my medications than it did while I was on my medications.
I do still take Keppra, an anti-seizure medication that I truly do need. Thankfully I have zero side effects from Keppra. It has actually improved my life instead of giving and taking. I also have a rescue medication that I take when needed as well. Both of these I feel give more than they take. It is about balance with me now.
I also use a lot of herbs that have helped me more than the prescription medications I was on ever did. I will be going over those in future posts, so be sure to subscribe and follow me on my social channels so you do not miss out.
When you are chronically ill, there is a level of acceptance that you have to have in order to deal with it and live the best you can. There is not a magic pill out there that is going to change chronic degenerative diseases. You have to accept that life isn’t perfect for you and really, who does have a perfect life? No one I know, that is for sure.
Your new normal is something you have to make a priority. Getting through life and finding new ways to do things is why I created this website. I still have a long ways to go and I am glad to have you on this journey with me as I create new habits to help me day-to-day. I plan to live the rest of my years as the best life I can possibly live. My bullet journal is one of my most important tools.
I also use herbs to help me manage the symptoms of my illnesses. I will share some of that and how I prepare them and take them as well, but I am not a doctor.
There are other tools that I have added to my Chronic Illness Toolbox and I am more than willing to share that here as well. I’m pretty much an open book.