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Comments 18

Prescription Medications: Damned if You Do, Damned if You Do.

 

Copy of Copy of Copy of Copy of Copy of Copy of Copy of I Forgot How To Feel Better (3)

I’m going to try something drastic.

Necessary disclaimer: This post should in no way indicate that I do not believe in prescription medication. Sometimes prescription meds are very necessary. I am a huge fan. However…

Over the past decade, I have come to the realization that I do not like the person I have become. I am entirely dependent on my pharmacy to provide pills prescribed by doctors who don’t know what to do with me. Those pills make me… not like myself.

Doctor: "This will shrivel your testicles, but it'll get rid of your pain." Me: "Doctor, I have breasts." Doctor: "So it's not a problem, then!" (Courtesy photo.)

Doctor: “This will shrivel your testicles, but it’ll get rid of your pain.”
Me: “Doctor, I have breasts.”
Doctor: “So it’s not a problem, then!” (Courtesy photo.)

“Oh, you’re still in pain? Try Cymbalta, I’ve heard it works for pain.”

This is oddly sinister. (Courtesy photo.)

Muahahaha! (Courtesy photo.)

“Your back still hurts? Let’s throw some Lyrica in there.”

Take this pill! TAKE ALL THE PILLS! (Courtesy photo.)

Time for a pill party! (Courtesy photo.)

Still hurting? Up that Lyrica. And you know what? Let’s add nortriptyline.”

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“Now your heart rate is super high and you’re passing out at work? … Well, that ain’t good.”

The pharmacy is the moon that brings the tide. That paraphrased line from Stephen King’s “Misery” has always resonated with me; his psychotic nurse was the moon that brought the tide of relief in the form of narcotics. Even before getting run over by that car in 1999, Stephen knew his stuff when writing about pain.

So because of all the reactions I’ve had, I have decided to come down off my medication.

"Say WHAT?" (Courtesy photo.)

“Say WHAAAAAAT?” (Courtesy photo.)

(I’m sorry. Look at that guy’s face. That’s a fantastic free image.)

Back to the point: I am tapering off my meds. All of them, if I can. I don’t care how long it takes or how hard it is or how much it hurts. (I say that now…) My spine specialist just broke up with me because I’ve become so complicated; instead of only having spinal pain, I have sharp jolts in my head, meat cleavers in my neck, black holes boring through my shoulders,  burning in my feet, and/or numbness in my hands, depending on the day. And I realized, after almost passing out at work again because my heart rate was so high from medication, that these pills seem to be doing more harm than good. Another thunderous realization: I have no idea what my pain baseline is.

I’ve been in pain for more than a decade. I do not know what that pain actually feels like — not anymore. I’ve been throwing medication at it for so long that it’s evolved, growing into this monstrous creature that lives in a pool of black pitch; it breaks the surface to snatch me up and devour my fragile body, snapping my bones and pulping my organs between its cracked, stinking teeth before gripping its fingers into my shoulders and drowning me beneath that oily sheen.

Rarrrrrr! (Courtesy photo.)

Rarrrrrr! (Courtesy photo.)

But I only ever see that creature through a hazy gauze of prescription medication. Nerve meds, narcotics, whatever they are, they blind me to what is really, truly standing before me. I’m too busy forgetting how to spell words, losing my train of thought, or walking into walls because of medication side effects. This creature and I must be reintroduced.

So come with me on this trip (har dee frickin har). I tried to find support systems online, not necessarily for withdrawal of narcotic meds (since that doesn’t quite hit the marker for me), but for tapering off nerve medication. There is surprisingly little information to be found for those who want to do it instead of those who have to do it. From the message boards and articles I’ve seen, the withdrawal can be horrific.

I don’t know if this will work or if I’ll be able to stand it. I don’t know what I’ll be like on the other side, even if I make it through the withdrawal. I might be in too much pain to continue, but I need to know that. It’s going to be an extremely long process, and I will be under the direct supervision of my doctors. I am going to document everything that happens to me, everything I feel, everything that threatens to derail me.

In a bizarre way, I’ve grown up with this pain. I’ve gone through life being parented by these pills. I don’t know who I am without it, and in a large way, it is me. Even Husband has never known me without pain to some degree. And I am not under the illusion that I will somehow cure myself by going off my pills. My goal here is to lift away these layers of protection that have only been strengthened by the years and figure out what I am underneath it all.

There might be more pain. There might be less. But it will be me.

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18 Comments

  1. Halcyon Thames says

    Someone I know with severe chronic pain took themselves off of everything and now they are almost pain free and off all prescription medications. It took a while for their body to “reset” but after a few months it was almost like a miracle. They are back working full time for the first time in 17 years.

    Liked by 1 person

  2. Best of luck, coming off of narcotics helped me (because I had narcotic gut) and even though I still have some pain, and some gut issues (from other reasons), I’d say it is better without them. Of course, that is me, and there were certain times there was no way I could have made it through without, but after a while, sometimes I think they can be more hurtful then helpful.

    Liked by 1 person

    • I’m googling Narcotic Gut right now, I’ve never heard of it… It sounds awful! There are definitely certain days where I can’t get through without meds, but if I can at least cut that dependency down, I’d be super happy. It makes me glad that you were able to do it, with everything you’ve been through!

      Liked by 1 person

      • It is sometimes referred to as Narcotic Bowel, but it affects more than just the bowel, so my doctor’s call it narcotic gut.

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  3. First of all, *very gentle hugs.*

    It is difficult to step dow of all the “nerve” medications, but it can be less difficult if you do it with a doctor telling you how to do it. I also suggest doing this one at a time. I know I had horrific reactions to all the “nerve” medications, from the rapid heartbeat to emotional/personality changes, depending on the medication. I had to find a new pain management doctor first for me to come of of Lyrica and Cymbalta because it made me so emotionally unstable I wanted to kill myself while on it and my pain doctor fired me for wanting to come off them since I wasn’t feeling or acting like me.

    I found a great doctor who helped me find the right mix of medications, mine no longer include nerve medications/antidepressants due to the extreme side effects. I am on a closely monitored mix of long and short acting opiates, benzos, oral Ketamine and Monthly Infusions Ketamine and Xylocaine that help with my chronic RSD/CRPS (a type of nerve pain.)

    I hope and pray you can safely step down off the medications that are doing more harm than good. I also pray the step down process goes as easily as possible and you find the right combination that works for you.

    Liked by 1 person

    • Thank you for such a thoughtful reply… and your very gentle hugs. 😀 Getting off the Lyrica is rocky, but I’m managing okay cutting that down on my own. The Cymbalta is the one I’m terrified of. How bad was it, coming off that? And I’ve actually never tried Ketamine or Xylocaine. Do those mess with your head at all? I honestly feel that nerve meds mess up my thinking more than opiates ever did. My doctors are against all the opiates, it’s so irritating.

      Liked by 1 person

      • J.W.,
        The Lyrica was worst for me because I had the worst reaction to it. I was crying uncontrollably, had major mood swings and was suicidal so I was cut off that cold turkey by my doctor before he fired me. The pain management doctor did this after calling me “mentally unbalanced” because of how I was acting at the appointment I made because of how the medication was affecting me. He was already such a bad doctor I was looking for a new doctor due to his rudeness.

        The Cymbalta was hard, but I worked with my doctor and had anxiety meds for when I started going through withdrawal. I didn’t get that far into Cymbalta before I knew it was not going to go well and made it easier to deal with, also I think having a doctor involved in the discontinuation of the medication was a major part of it going better for me.

        Ketamine infusions help so much, but it can cause hallucinations. The nurse and doctor in charge of the infusion use valium and other medications to help reduce the chance of them occurring. I also use an audio book I am very familiar with that I listen to each time that is calming, others listen to calming music to help you relax naturally. I even learned to do deep breathing and tightening and relaxing muscles as the ketamine is started to put me in the most relaxed state with the audio book going. The nurse who stays in the infusion room with us also talks to us if we have a bad hallucination reminding us we are getting ketamine and it is just the ketamine everything is ok. If needed additional medications are given. I do my infusions every 30 days for 4 days (M-Th) in a 4hr session then I go home till the next day, just so you know each doctor has their own preferred method for infusions and will let you know ahead of time what type they are going to do and what to expect. Ketamine makes you feel disinhibited so you are more emotionally vulnerable during the infusion and also can cause an anxiety night, but your doctor should write you a prescription to help with day if it happens to you. The Xylocaine is a more recent addition and it helps me the first week in getting the fastest relief and what feels like an improved infusion and results during the 30 days in between. I am trying to put together a post on my Ketamine infusions to answer other peoples questions and hope to do it after my infusions at the end of this month. If you have more questions feel free to ask me.

        I have had severe chronic pain (RSD/CRPS, which can be read up on at http://www.rsdhop.com if you have any questions about it, I am in stage 4 with full body and internal organs affected) and while my pain is still so debilitating I can’t work and am on disability, but I am more functional with the infusions. As I said before I am on a lot of medication due to the severity of my pain. I use a Fentanyl patch and Oxycodone for my narcotic pain relievers, I am supposed to have Fentanyl pop or sublingual spray to use several times during the day for my pain, but Medicare refuses to cover it for me because I do not have cancer and not in hospice (I am not 30yrs old yet and will live with this pain for the rest of my life but because of this pain syndrome and comorbid pain conditions that have developed over the past 11yrs, sorry for the rant it really gets my goat.) I take oral ketamine daily and I don’t experience hallucinations, but you have to adapt to taking it since it will cause other side effects. Those can be Tip-of-Tongue (ToT) moments, where you know the word or idea and feel like you just about have it but can’t recall it, it does improve, it can make you a bit tired and affect your short term memory. I use a lot of Post-It notes, but I think the severity of it that I experienced is due to all my opiate medications, the strength of those meds (I am at the top dosage of my medications for my weight) and the chronic fatigue syndrome that has revealed itself a few years ago (the joy of comorbid diagnoses!)

        I also think unless you don’t want to be on opiates, which you could possibly start with a beginner opiate (as my chronic pain friends and I joke about the classifications of the medications) may work for you for a long time before you end up where I am at. I started with Tramadol and Codeine.

        Unless you love your current pain management doctor’s practice and don’t want to try opiates to help with your pain, I suggest looking for a new pain management doctor who is open to try all different types of pain control with you. I would also notate the reaction you have to the medications you wish to stop taking and get a personal copy of your records so you know what is in there and know if they charted your reactions to different medications and how things have affected you since your decision to stop certain medications.

        Whatever you do I hope something helped. Feel free to contact me anytime for more info and pray that you find out the right medications and doctors for you and your pain. Also I’m sorry for such a long post.

        Liked by 1 person

  4. Was never a huge fan of Cymbalta.. I was perfectly happy to stare at the wall and drool on myself..

    Luckily or not so luckily.. I’m allergic to Lyrica.. and it’s relatives.. Talk about damned if you do and Damned if you don’t.. I just get to attempt to over stimulate my nerves to calm them.. not real successful.

    I don’t envy the detox. Good luck

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  5. Good luck n this journey. I’ve consciously withdrawn form ALL the pills for the exact same reason as you are doing now. Gabapentin & muscle relaxants were the worst for me.. I am currently trying to GET cymbalta and lyrica to see if it will help my pain.. It is scary seeing someone needing to get off them just like I have with all the other meds. It def makes me afraid to even try them.

    Also I liked ur post on the FB group too, but I have a WP blog so thought Id say hi here too! If you ever need someone to talk to about this journey I would love to share what I have been through and hear what you are going through.

    Good luck!!!

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  6. Get yourself some high strength omega oil capsules. I came off cymbalta last summer/autumn without telling my dr. I was on 90mg a day, and immediately dropped 60mgs, but those last 30 were a nightmare. I ended up buying some empty capsules and halving the cymbalta capsules into them, then halving the halfs and so on. The worst symptom of withdrawal for me – and many others it seems – are the ‘brain zaps’. They kind of have to be experienced to be believed, but they are horrible, and very debilitating. Omega oils seem to stop them in their tracks. I still get the zaps maybe once or twice a week, and it’s usually because I have forgotten to take my flaxseed oil for a few days. This is not unusual though.
    Do not be bullied by a dr who wants you to drop the cymbalta in major chunks. They can be very short sighted at times, in my experience, and just because the pills only come in certain strengths does not mean there arent ways around that. Be guided by your body.
    I had little trouble coming off Lyrica. I actually found it harder to tolerate the side effects to build the dose up – I felt roaring drunk within a short time of taking them, so I think my body was just relieved to get them out my system.
    You might want to look into amino acids. There is one called DLPA which has two parts to it – the D and the L – one of them has a pain relieving effect and I found it very helpful.
    I wish you lots of luck, and I for one will be here to support you as you go through this ((((hugs)))). Just give me a yell via my blog (a msg on any post) as I am never far from my phone, although I am in the UK xx

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  7. Hey there! I’m undergoing a similar process although not quite as intentional as yours and more gradual. I’m going to support myself by asking several friends to remind me as I go along that if I’m feeling a little off, the drugs or withdrawal is why! I tend to forget that sort of thing.

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