Tales of a Boundary Ninja

Trigger warning: Suicidal thoughts

Greetings, gentle readers, I have missed you. I am sorry for the long silence. My doctor, in what turned out to be a VERY frustrating experience, as part of the treatment for my back/hand numbness problem put me on a drug (which shall remain nameless as I know not everyone reacts the same to this class of drugs and I don’t want to prejudice anyone against it since they might not have the same experience) which had very bad side effects which took some time to figure out. And yes, as usual, the Boundary Ninja was a huge help. Turns out that a therapist who has a deep interest in neurobiology can be a lifesaver. 🙂

I started out on a dosage of 25 mg/day and my doctor had me increase the dosage by 25 mg/day every seven days such that when I got back from vacation and went in for the results of my MRI, I had just hit 200 mg/day. I started going into an emotional tailspin over the next few days. Now, we had just returned from vacation, my husband had immediately returned to working overtime, and I was no closer to knowing what was going on with my hands because I was now waiting for my referral to the specialist. Not to mention that I had shelved both my brother dying and my aunt’s revelation when we left for vacation, so not feeling really great didn’t seem all that surprising. But I kept sliding down. Further than I’ve been in a long time. Then I started feeling guilty, for not being rested after vacation, for not posting more, for not coping better, etcetera ad nauseum ad infinitum. This was combined with this weird sense of detachment, of not being able to muster up the energy to communicate with anyone or do much beyond watch TV. I was having trouble focusing and concentrating to the point where it was interfering at work. I realized I was in real trouble when I found myself quite calmly considering how to kill myself but knowing I had nothing reliable available, then I started thinking about what I would have to do to obtain what I knew to be more certain methods (ok, suicide crisis training was NOT proving to be a positive thing in this situation. Or maybe it was, it stopped me from trying with what I had on hand). When I hit the point where I was thinking through where to do this so a family member wouldn’t find me, it suddenly dawned on me that 1) I really didn’t want to die, I just felt so hopeless and pointless and overwhelmed by pain and 2) I was in serious trouble and needed to ask for help.

So I told my husband what was going on and how I was feeling. Then I made a hysterical phone call to BN, which was really hard because I was absolutely certain he was going to be, if not angry, at least completely exasperated and fed up with me. This whole experience was very strange in that I was having extremely intense emotions that were screaming at me that they HAD to be reality while this small rational part of me stubbornly clung to knowing they weren’t true, or at least being willing to act as if they weren’t until proven wrong. So I called. BN called back and was wonderful. I fell completely apart and he said all the right things. That he was there, that I had done the right thing to call, that I absolutely should be reaching out and talking about these feelings. He agreed that he thought it was my medication and that a call to my doctor was a good idea. He ended the call by telling me not to hesitate to call again if I needed to. I also spoke to a few close friends who assured me that they didn’t hate me and yes, calling my doctor was a good idea. 🙂 All of that grounded me enough to make some calls.

Now, I was not thrilled with my doctor’s practice. It’s a very large practice and the NP I had seen for 20 years had left and I had been bouncing from doctor to doctor ever since. No sooner would I start to get comfortable, when that person would quit. So I barely knew this doctor and had little to no trust built up. I had no idea why I was on this drug, and he had not done an adequate job of explaining my MRI results, especially after all the urgency of needing to come in right away, only to have to wait several weeks for a referral. I called and left a message with the practice about experiencing side effects and asked for a call back. In the meantime, I realized that my pharmacist might be able to help and I called him. My pharmacist told me it was not unusual with this drug for people to experience some mood swings or emotional side effects while building up the dosage and that the best thing to do was to just try to ride it out and hope it settled out. When I said I was finding it very difficult, he said I might want to consider talking to my doctor about whether it was necessary to stay on the drug.

I eventually ended up talking to a nurse at my doctor’s practice whom, to put it politely, I think made a mistake when it came to choosing a profession. She opened with a very annoyed “so you’re having side effects with the medication?” and I said “yes, I recently started experiencing some bad mood swings.” To which she barked back “this drug does NOT cause mood swings!” So much for the caring and compassionate approach. I very dryly said, “that’s interesting, as my pharmacist told me not five minutes ago that it does.” Completely ignoring this response, she moved on to her next attempt to discredit my experience. “Well, what dosage are you on now? When did you start experiencing these mood swings?” So I told her I was on 200 mg, that I had started taking 200 mg the day I had seen the doctor for my follow up and that the mood swings had started two days later. So then she snaps at me, as if its PERFECTLY obvious (knew I shouldn’t have skipped that telepathy class in college! :)) “well, the doctor says you can drop back to the dosage you were comfortable on.” So I’m thinking, wait a minute. I’m on 200 mg, on my way to 300 mg and now its like, hey whatever, take what you want. What the hell? So I said to her, “you know part of the problem here is that I don’t even know why I am on this medication and this is even more confusing. I mean do I need to take it or not?” To which she snapped at me (I should add that my tone was not exactly pleasant at this point) “it’s for nerve pain” and I practically screamed back (because I felt like I kept saying this over and over and over) “I’m not in pain, I’m only experiencing numbness!!” (Come to find out later from the specialist, nerve pain can present as numbness, but the idiot didn’t think to explain that.) So she just said one more time, “just take less” and I said “fine” and we hung up.

So starting the next day, I started taking 25 mg less a day. But evidently I had hit a magic level in my system and things were just not good. The next week was a long dark tunnel of hopelessness. I coped by accepting that as intense as my emotions were, that they were not an accurate reflection of reality. So I just kept continuing to do what I needed to, even though it all felt too hard, prioritizing in terms of my energy (hence no posting) and kept plodding, hoping there was another side. My dear husband was very patient and supportive, dealing with several meltdowns and clearly reflecting that how I was behaving did not seem like me, that he really believed it was the medication and that I just needed to hang in. Of course, he kept asking why I couldn’t just stop taking it altogether and I kept telling it wasn’t a good idea with this class of meds to just go cold turkey. I literally felt like I had lost myself.

So I went back to see BN. On the upside, gentle readers, in my desperation there was no pretense, hesitation or false pride, I was making weekly appointments. I sat down and when BN asked me how I was, I fell apart. My cognitive abilities were so bad, that I could barely complete a sentence to explain. I think my inability to even explain what was going on was what concerned BN the most. Even when I’m at my most confused, I can usually at least manage to be verbose about my confusion. I was just sitting there, crying in frustration and making futile gestures. In the middle of my attempts, BN asked me the name of the drug and picked up his Iphone and started surfing. I was actually getting a little annoyed at the division in his attention when he looked up and said “oh, it’s your Gaba-C.” I kid you not. 🙂 He then proceeded to explain to me what part of my synapses were being affected by the drug, and that it was interfering with my ability to cogitate and to communicate. That this medication actually interfered with your ability to think in the same way that alcohol does. He said for some people, the side effects might not really bother them that much, but for me he thought it was extremely problematic. He didn’t think the drug was causing mood swings. I had always used my intellect and ability to communicate to compensate and cope with what happened to me, it was how I handled all of my emotional issues. So essentially, the normal stuff was welling up from my limbic system, but how I normally dealt with it was being taken off line by the medication and I was being overwhelmed. This totally fit how I was feeling and explained so much of what was going on that I literally started sobbing in relief. When I could talk, I must have thanked him about 10 times. I told BN I honestly thought I was going crazy, so it was a huge relief to know it was actually the medication. He told me that he wasn’t a doctor, but that I could read the article on Wikipedia for myself.

I did read the article and guess what? All it did was mention the four receptors affected by the drug. BN figured out all the rest! I mean who knows this stuff off the top of their head? When I saw him the following week, I told him how fortunate I was to have a therapist whose hobby was neurobiology and that he rocked. I went on at such length at how impressive what he did was and how much it helped, that he might have turned slightly pink. 🙂

I finally got to the Spinal Wellness Center, with which, I am delighted to report, I am very happy. They’ve explained what is going on and come up with a treatment plan. Most importantly, they actually listen! My doctor there has agree this is not a good medication, so I am weaning completely off of it. He also explained to my husband exactly why I have to go off of it at the same rate I got on it. 🙂 I’m down to 75 mg and about a week ago started to once more feel like myself. I have some energy again and can think. I knew I was going to be ok when I started wanting to write. I feel like I have myself back again. I even started doing real work in therapy again which I will talk about in more posts to come. I am having a nerve block on Monday, which we are hoping will help the numbness and we can go from there. A nerve induction test did find carpal tunnel in both wrists, so I’ll be wearing splints. We’re going to see how bad things are after the nerve block, but the doctor who performed the test said he thought I was probably going to need surgery, but we’ll cross that bridge when we come to it. It’s all easier to deal with when people talk to you about what is going on. Oh yes, and when your brain is actually functioning.

So I am back and again sorry for such a long absence. I will be catching up on responding to comments and correspondence and working on more posts, in between getting ready for Christmas. I cannot tell you how good it is to be back!