On a hard road to a better place.

On a hard road to a better place.

The moral of today’s story is that no one knows your body and brain the way that you do, and it’s extremely important to back yourself if you don’t think a solution is working for you.

In the case of medical and psychological issues, your doctor can advise on the best course of action–but cannot intimately know the response (or lack of) from that action. This goes double for illnesses like depression and anxiety which are not as measurable as other physical conditions.

This doesn’t mean ignore the advice of your doctor. Your responsibility as a patient is to adhere to your treatment plan and keep your doctor informed as your body responds to treatment; the doctor’s responsibility is to evaluate the effectiveness of the treatment and determine if or how it should be changed.

When any part of that process breaks down, the well being of the patient is compromised.

I was first diagnosed with severe anxiety disorders in 2010, but it wasn’t until mid-2011 that I accepted medication as part of my treatment plan. The choice to take medication for a psychological disorder is deeply personal, and my first strategy was to see if counselling alone would work.

It helped to a point, but the reality was that the chemical balance in my brain didn’t allow enough space between a ‘trigger’ event or thought and the panic that trigger produced. Coping with anxiety is almost a sport–you see a ball coming at you, and in a split second you need to decide how to move your body in order to catch that ball successfully. Or be hit in the face with it. For me, medication slowed that process down enough that I was able to look objectively at the triggers and the thoughts that occurred, and deal with them in a rational way–before the panic hit my system.

In other words, I had the time to catch the ball.

My initial refusal was based on the belief that medication only offered the option to ‘numb out’ the feelings of anxiety or depression. I never wanted that. I wanted to learn how to cope with the onslaught of triggers and process them in a healthier way. This was (and still is) the over-arching goal of my mental health plan: to develop mental strength with the assistance of medication in the aim to be able to complete the same processes without it.

That is my goal, and those are my reasons for choosing medication. I don’t seek to judge anyone who chooses against it, nor do I judge those who accept they may never be without it. Those choices are entirely theirs to make, and if it helps them live well, that is what matters.

Initially I was prescribed Lovan (also known as Prozac).

Actually–that’s incorrect. My first script was for Lexapro, but within an hour of my first dose (which was a sub-therapeutic dose) I had an intense adverse reaction. But for the fact I lived at the time with a former ER nurse, I might have gone to the hospital. I was sick for three days. The dizziness was so intense that I couldn’t handle being upright, and had to half-crawl half-slither to the toilet to avoid passing out or vomiting. My very bones felt sore. It was like the world’s worst hangover met man flu.

I spent three days in bed, eating very small plain meals, and watching the Babar movie–a DVD I’d bought some months ago for the nostalgia.

I was terrified to go back to my doctor for another devil treatment. Fortunately, supportive friends dug their heels in and marched me back where I explained to my GP the incredibly bad reaction (which she didn’t seem to think was possible on such a low dose, but I wouldn’t accept any future in which I persisted with the medication). Then I was prescribed Lovan.

Adjusting to Lovan was an odd experience. I suppose it was unpleasant, I was quite nauseous (not to the level I was with that single dose of Lexapro, but enough to feel queasy at the thought of food and my appetite was greatly reduced), shaky, and felt ‘off the planet’ more often than not. Luckily I was on holidays, I don’t know how I would have coped physically in my job at the time. But mentally, the adjustment phase was really no comparison to the hyper intense anxiety that I was experiencing at the time.

Then one day… it was like…

Okay, this metaphor is going to get giggles, but it was like I could finally take my bra off.

Bra-wearers everywhere know there’s a unique sense of relief when you finally get home, put your feet up, and undo the blasted thing. Air rushes into your lungs, you feel free and unrestricted. And comfortable.

For the first time in a long time, I felt comfortable. I could breathe. The shaking in my hands stopped, I no longer felt that I was a split second away from tears or anger. I had the space to process my environment and turn away the thoughts that gave me trouble. With the help of an excellent clinical psychologist, I began cognitive behavioural therapy, where she taught me how to identify what was meaningful and what was not. How to retain control of myself in a situation where I could control nothing else.

My most memorable conversation was after a workplace incident where a senior staff member had upset me to the point where I’d had an intense panic attack. Just an hour into my eight hour shift I went home. I told this story to my psychologist, sure that she would validate my course of action. Instead, she said something I’ll never forget.

“You let that woman steal seven hours pay from you?”

The next week, instead of going home sick again, I spoke with my manager about the incident and with her help resolved to no longer be on the same shift as that staff member. Learning to think logically about the world, about the choices I could make for myself internally and externally, has played a huge part in how I react to depression and anxiety now.

Whether I could have achieved the same without the Lovan is difficult to say. I certainly don’t think I could have done it as fast, or as effectively without it.

The problem with psychological medication, even a very effective one, is that they often cease being effective. This occurred around two years into my taking Lovan. My dose had been increased once when it first became apparent that I was ceasing to function, and as the symptoms persisted my doctor and I made the choice to try a different product.

I was put on Effexor XR, 75mg daily. The process of weaning off Lovan and stepping onto the Effexor XR was horrible. Lovan requires extra time to exit the system, due to how it metabolises in the body. Over a period of three weeks, I changed medications. I remember it keenly, because I was at this time having more difficulties at work (at a new store I’d recently transferred to). I was still seeing my psychologist when I could afford to.

But I didn’t feel any sense of relief from the Effexor XR. There was no ‘bra off’ moment. The side effects of adjusting to the medication ceased, but that was about it. My life hit a smoother patch, and it wasn’t until the next difficult moment that I sought my doctor’s advice again.

I stated in that appointment that I didn’t feel any effect from the medication. My anxiety had remained low, but depressive symptoms were more evident than ever. I’d left my long-time job as a supermarket cashier and was struggling in a job with another company that refused to give me reliable hours. My doctor suggested that the difficulty was coming from there, and not from the medication being ineffective.

This is where I should have first stuck up for myself. Yes, my circumstances were difficult–and absolutely that was having a strong influence on my mental state. However, I knew the difference between how I had felt in rough times on Lovan, and how it felt now. When Lovan had been effective, I had the ability to function in spite of circumstances. At the time of the appointment with my doctor, I was crumbling under them. Mental strategies I had worked on with my psychiatrist weren’t able to help, as I didn’t have the ‘space’ around the problem to process it effectively.

The doctor said persist, so I persisted with the Effexor XR.

Around a year after first being prescribed Effexor XR, I moved interstate and back in with my parents. Not long after that, I sought out a doctor for support in dealing with the same anxiety and depression that had been present since stepping off the Lovan. As with anything, it came in waves and breaks that let me feel like I was okay for a time, but it always returned with great intensity. This was the primary reason that I argued the Effexor XR was ineffective–why was I experiencing such catastrophic recurring depression while on a medication designed specifically to alleviate that?

This new doctor agreed, and looking at my prescription, was confused. The dose I’d been on for over a year was (according to her) a dose only given for a week or so as patients adjusted to the medication. Normally it was doubled once the system began to tolerate it, and what I had been taking all this time was not enough to be therapeutic. She immediately doubled my dose, and once again–I felt no better or worse.

I still don’t know what is ‘high’ or ‘low’ for Effexor XR. At another appointment, with another doctor (once I finally found a doctor in my hometown that I felt comfortable with), I broached the subject of switching my medication. I was now on 150mg daily, which according to this doctor was ‘quite high’ and she was very cautious of upping it any further. She supplied me with a list of medications that she believed might be worth looking into. As some of them are not eligible for the Pharmaceutical Benefits Scheme (the system that subsidises medications in Australia) she suggested I investigate them and decide which I would like to try next.

This is really when I should have acted, as here was a doctor that believed I was feeling no benefit from Effexor XR and was prepared to assist me through switching to a new medication. The timing, though, was bad–in that same week I got an offer for a full-time dream job. If I switched medication, I would be in the worst stages of withdrawal and adjustment at the exact point I started work. I put it off, and when life got smoother again I forgot about it.

As you do, when things are going well. You assume it isn’t broken.

But the cycle repeats, and repeats–the new job caused additional symptoms to surface, and I obtained a referral to a psychiatrist. I wanted to start from the beginning, to explain everything to an expert in medicine and psychology. I didn’t feel my medication was working, and I hoped that he would be able to help devise a treatment plan that better addressed my areas of concern.

For an exorbitant amount of money, what I got was a diagnosis of depression, a strong implication that it came from some sort of family abuse, and a script for a higher dose of Effexor XR. I left feeling cheated. Not only did I already know I had depression, I knew that of all the possible root causes, my family was not one.

From the beginning of our session he questioned my relationship with my family, and kept returning to that same line of questioning over and over. I could almost see his conclusion in his eyes, this dead-set belief that I had been abused as a child but wouldn’t admit to it. Nothing could be further from the truth. I may have felt disconnected at times, but never unloved or unwanted. Yet he persisted with this idea, and more than that–he pointedly dismissed any concerns I brought up as ‘part of who I am’.

Most of these concerns I now know to be Aspergers/Autism, but this psychiatrist was determined to reach the answer he wanted. I took my new script, and refused to book a second session on the way out. He had nothing of value to offer. I probably should have refused to take more Effexor XR as well. My dose was now 225mg daily.

And it still. Did. Nothing.

The troubling reality is that for over three years now, I have been taking this medication for one reason: to avoid going into withdrawal. It has created its own need. In those three years I’ve not experienced any relief that wasn’t also tied to significantly smoother life circumstances, I have not weathered any storms better than I would have without it, and while I pride myself on being strong (and I have survived and accomplished a lot!) not one bit of it has been due to the medication.

No doubt Effexor XR is a miracle and life saver for others, but it hasn’t been for me. The tendency for doctors to simply up the dosage and hope for the best is typical of psychiatric treatment, and not the fault of doctors themselves. Everyone responds differently to different levels of different medications. Perhaps at 225mg I would have experienced relief, the only way to know what is effective is to see what happens.

Finding the right medication is a little bit of knowledge, a fair amount of trial and error, and an enormous amount of luck.

This time, I’ve tried a different approach. I know that I experience both depression and anxiety, and they feed off each other. They both feed off negative obsessive thoughts, usually to do with low self worth. I have a number of other obsessive traits, and a number of compulsive traits that do make things challenging.

For instance, I currently have it in my head that I’m going to make cookies. I can’t do it right this minute, because I don’t have the necessary resources. But I can’t get the thought and the desire to make cookies out of my head, and this obsessive thought triggers the compulsion to buy anything and everything needed to make cookies. Even if I think I have something already at home, I buy it anyway.

But I may not actually make the cookies for months. I might even know while I’m buying these items that I won’t have the desire or drive to actually bake for quite some time, but I need to get the resources now.

And this happens with everything. I decide I want to have a nice bath, so I purchase all sorts of bath goods. Tools for a new hobby. New sketch books, pencils, clothes for a particular occasion, make up, kitchen items, I become obsessed with completing these arbitrary ‘collections’ that I need to achieve a particular task that my mind won’t let go of.

The cookies are just one example–and I will make them, I am damned determined to now, of how these obsessive thoughts can drive compulsive behaviour. Now imagine that same level of obsession as it focuses on negative factors of the self, as it takes anxiety triggers and refuses to let go of them.

I believe that the key to alleviating both my depression and anxiety is in reducing that obsessive thought pattern. I can effectively refuse the arguments put forward by the obsessive thinking, but I’m not able to stop the thoughts from returning. It is a function of Aspergers/Autism, so it’s unlikely that I will ever completely free myself of it, but I can learn to reduce the severity and the effects.

This is something I will address with my psychologist, but as I am also looking to move away from Effexor XR, I did some investigation into what medications other female aspies found useful.

I found the results… very interesting. I read a lot of accounts from women who had found Lovan/Prozac effective for a limited time, and who had negative experiences on Effexor XR. This validated my belief that from the very start I didn’t feel it was working as intended. Many of these women had come to the same point of taking Effexor XR to avoid going into withdrawal.

I will repeat again, though: Effexor XR is an excellent medication when it works for you. None of this is evidence that it doesn’t work, just that there are people for whom it is less effective. Trust your body! Only you truly know if it is working or not.

I read on to discover what medications these women had switched to, whether they had found anything that was equally or more effective than they had found Lovan to be. Most of them mentioned sertraline, marketed as Zoloft.

Interestingly, Zoloft is especially effective in reducing obsessive and compulsive behaviour, which I have identified as a key factor in how my anxiety and depression develops.

So back to the doctor, this time armed with information and a direct request to be put on Zoloft. After taking everything into account, she agreed that Effexor XR was absolutely not working for me, and that Zoloft was a good logical choice. I feel especially confident with this choice, which may be more effective than any active ingredient. Even if the result is a placebo effect, it will be an effect that benefits my life–and that is worth it.

This is my last week of taken Effexor XR. Withdrawal from Effexor XR is… horrible. I have missed doses, had situations where I was unable to get my script filled in time, and it hits you like a truck within hours. Because I am still taking some, it hasn’t quite hit yet. I’m not looking forward to when it does.

Dizziness, nausea, ‘body zaps’, extreme irritability, elevated anxiety and intense mood swings are just some of the things I can look forward to on my journey this week. But, as I am currently working fewer hours due to circumstances beyond my control, now is the time to do it. The adjustment to Zoloft will be similarly unpleasant. Anyone who thinks that medicating a mental illness is an ‘easy way out’ has no idea what is truly involved.

There is nothing easy about adjusting to psychiatric medicine. It takes weeks of feeling like hell, and only after months do you see any true result. If you see a result.

But the rewards outweigh the risks, in my opinion. If I can reduce the occurrence of obsessive thoughts, so much of my life will be freed up. My wallet will thank me, for one! I will be able to reduce compulsive behaviours that are harmful, or that reduce my ability to function. It may also help me to be more flexible when it comes to making plans and adapting to changes.

I feel good about this. I’m glad I finally pushed for the change, and as much as this change over period is going to suck, it will be worth it.

Medications don’t work the same for everyone. So if you’re truly not feeling any benefit from something, it’s important to really back yourself when talking to your doctor. Only now do I feel ‘validated’ in my belief that the Effexor XR wasn’t effective. I should have believed myself and pushed for change earlier.

Here’s to a hard road to a better place!

 

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5 thoughts on “On a hard road to a better place.

    1. I have a strong belief in medication, this just happened to be the wrong one for me. Good luck with your path! There’s no wrong way to go about it, just says that work for a person and ways that don’t.

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      1. I should rephrase that, I believe that medication works I just really prefer an alternate means if possible. I’m actually trying medication this go round, but my goal is to be free of it. I’m a bit of a health nut, so I’m trying to find something that will allow the body to heal in a natural way. Everyone has varying experiences, I just don’t like chemicals. It’s more of a health preference than a matter of what works or not. I absolutely understand that medication can work. Unfortunately, it can just take so long for people to find the correct combination. That is my experience and I would love to find ways of finding relief for those who ether don’t wish to take medication, or want relief in the mean time while they are waiting for the right combination to come along. I apologize for the confusion. I was tired last night.

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      2. No stress! As much as I believe medication can help, I also strongly believe that it works best with other forms of therapy. I wish there was a way to easily find the right balance of medication for someone, though.

        I understand your stance on adding chemicals. Personally, I don’t consider it unhealthy. Kind of a case of, ‘if my body can’t make its own, store bought is fine!’. Working to achieve balance with your brain chemistry as it exists is also perfectly valid.

        I do aim to be off medication in the long term, though. I look forward to seeing what advice you have, too! The more strategies you have to attack and manage the negative effects of your mental state, the better and stronger you can be. 😀

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      3. I agree! I wish there were an easier way for people to find relief and the right combination of techniques or medications, but everyone is so different that it is an individual effort. The best that we can do is share our experiences and hope that it helps someone else. 🙏🏼

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