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This week we interview Gemma who talks about her experiences with both antidepressants and benzodiazepines and in particular the difficulties that parents of children with special needs encounter when they seek treatment for emotional or psychological distress.
In this episode we discuss:
- How realising that she was not being the parent that she wanted to be led Gemma to seeking medical help for anxiety and depression
- That Gemma was put onto a SNRI (Serotonin–norepinephrine reuptake inhibitor)
- How the side effects of the antidepressant drug, like fatigue and appetite changes were insidious and difficult to recognise
- How a Benzodiazepine was added on top of the antidepressant
- How Gemma had full trust in following medical advice and relying on a tablet for a mood disorder
- The power of Psychiatric drug advertising
- How Gemma came to realise that she started to crave the Benzodiazepine
- How changes in Gemma’s health caused her to seek information that made her realise that the health effects were a result of the drug becoming less effective
- How Gemma, being uninformed, stopped the Benzodiazepine cold turkey, experiencing a sudden rush of withdrawal effects
- How Gemma’s doctor didn't recognise withdrawal or dependance
- How Gemma tried to reduce her SNRI by 10 milligrams a month leading to very difficult withdrawal effects
- How it took 9 months to go from 20 milligrams to zero
- How Gemma took time to share what was happening with her children so they understood the situation
- How Gemma found taking vitamins and supplements helped her during withdrawal
- How Gemma, after 2 years off the drugs, still experiences body pain and anxiety attacks
- That people should focus on nutrition, exercise and diet before considering taking an antidepressant
- That, if you are prescribed a drug, look up support groups first to see what you are getting into
- That the parents of children with special needs have particular difficulty finding the time to attend talking therapy due to the extra demands of parenting and the difficulties finding respite
Episode 20 Gemma's story
Full transcript, episode originally aired Tuesday 23 May 2017
Intro: Hi there! Thanks for listening to Let’s Talk Withdrawal, a weekly discussion on antidepressants and the issues surrounding them.
James: Hello, this is James, and welcome to Let’s Talk Withdrawal, a weekly podcast discussing antidepressants and mental health. A little later I’ll be going through some of your feedback. Thanks so much for getting in touch. Please keep your messages coming. I love to hear from you.
But first, we have an interview with Gemma. Gemma describes her experiences with antidepressants and benzodiazepines, and the particular difficulties that parents of children with special needs encounter when they seek treatment for psychological or emotional distress. Gemma, thank you so much for talking to us today. Can I start by asking you to tell us a little bit about your background and how you came to be involved with psychiatric drugs in the first place?
Gemma: Yes. The reason why I started taking antidepressants in the first place is because I was a mother of two young children at the time. My son had received the diagnosis of autism and he also has some physical special needs to go along with that. But he is one of those unfortunate cases where he had an adverse reaction to several vaccines that he had received and so it was a very quick decline on his part.
As a parent of a child with special needs, I was working in crisis mode 24/7, both with his neurologic and physical conditions. Fast forward a little bit and once we got him stabilized with his health yet still dealing with the autism, I also had my daughter. She was about a little bit over a year old and I had weaned her and everything.
Everything came to a head in the middle of my son’s treatment for autism. We were doing a lot of behavioral interventions in the home. We had specialists coming to visit to do therapies with him. When I was practicing through some of that, he had a meltdown and it came to a head where one night, I had my own meltdown too. It was after that that I realized that I was not the parent I wanted to be. I was being very reactionary and not pleasant, so I had made the decision that I needed a tool to help smooth out the road, put my head down, and plow through what I needed to do as a mother to my children.
So I went to my obstetrician for a regular visit and I brought up the topic with him. He was very quick to prescribe an antidepressant. I know that we talk a lot about SSRIs; this one in particular was an SNRI, so it influenced both serotonin and norepinephrine. So I went on that and there was the period of adjustment with the drug uploading to my brain.
I had mild side effects from that at the very beginning, but I noticed over time that I became tired. I had this inclination to take a one- to two-hour nap every day in the afternoon. Now mind you, these side effects are insidious because for the longest time, I thought this was a matter of willpower. I could explain away what I was experiencing. “Oh, I’m the mother of two young children, one of them with special needs. Of course, I’m going to be tired.”
I did not notice right away that my appetite had changed. I began to crave sugar a lot more. Over the course of eight years, I had gained at least 35 pounds. Now mind you, with being a mother to an infant still, I had not lost all of my baby weight, so it was that 35 pounds on top of what I was at the time.
My doctor did not really ask questions that quantified my experience. What he would do is when I was there for a visit, he would ask, “Are things okay?” And I said, “Yeah, I think they are.” “Are the drugs helping you?” “I think so. I feel calmer as a person. I don’t let – I don’t react to every little thing. My threshold is much higher.” So in essence for the first two years, I did notice that it even out the mood as I had sought it out.
When things started coming to a head again and I started being more reactionary again, he added in a benzodiazepine, and that was to be taken as needed.
James: Thank you, Gemma. And certainly, fatigue is a commonly reported adverse effect of antidepressants. But often we put it down to poor diet or lack of exercise, not realizing that all the time it’s down to the drug. Did you mention the fatigue to your doctor, and if so, did he discount it or did he recognize that it could be down to the antidepressant?
Gemma:No, because I didn’t recognize it at the time. I didn’t see the connection. In the words of Steve Jobs, “You connect the dots looking backward, not looking forward,” and so it’s only in hindsight that I could connect those dots. No, I thought it was a willpower thing with me. So, you know, blaming myself for my failings and not the drug itself.
James: It’s a common reaction, isn’t it? Because you’re looking for every excuse to believe in your antidepressant, because it’s what your doctor has said is going to help you, so you kind of believe in its magic powers to make you better, and that everything negative you tend to blame on yourself or your lifestyle.
Gemma: Yes, and another thing is I grew up in a family where both of my parents were medical professionals, and so I had full trust in Western medicine. If you had a condition, you took a medication for it if it was offered. You followed your doctor’s advice, and so I was very content with that. I remember when I was in college doing a paper on the benefits of Prozac, because I had seen it play out in my family for a family member. They needed it at the time and their personality evened out (as they had hoped and as we had hoped, too), so we saw the efficacy at that point. You know, was just as brainwashed by the pharmaceutical industry then to the point where I sought it out. I have a question for you though.
Gemma:In the United States, we have drug commercials. Does the UK do that too, or are they banned?
James: No, in the UK, pharmaceutical manufacturers are not allowed to advertise prescription drugs on television. But like the US and other places, the pharmaceutical sales representatives are incentivized to persuade doctors very strongly to prescribe particular drugs as often as possible.
Gemma:Yes, and that’s exactly what they do over here, too. I just wish that they nixed the commercials from TV. But I’ll tell you, from a marketing standpoint, they’ve done their homework.
James: They really have, haven’t they? And I’ve seen the commercials and for anybody suffering emotional distress, too see that commercial you think, “Give me those tablets now. I can’t wait any longer.” They really are preying on people who are desperate for help.
Gemma:Yes, and also for marketing for any business, if you want to market your product effectively, you create scarcity. So the whole song-and-dance about there being a deficiency or depletion in serotonin levels or a gap, boom, there you go.
James: It’s certainly true that pharmaceuticals have done a brilliant job of creating their own market for these drugs, based really on very suspect science, and then exploiting it for billions of pounds of profit, meanwhile leaving millions of people in a very difficult place. And Gemma, you were telling us that you were also prescribed a benzodiazepine. Did you come to regularly rely on that in addition to your SNRI antidepressant, or did you take it as and when needed?
Gemma:Well, I was given it as needed and I noticed that during my monthly cycle, obviously mood would change and ramp up a bit, which is to be expected. I mean, as women, we know our bodies and we know the best times of the month for positivity and possible negativity. So I was not given a full month prescription for that; it was only to be taken maybe up to a week at tops throughout the entire cycle.
But I did notice as time went on, I became to be more dependent on the drug. It was different from my antidepressant because I did not feel a physical craving to take my antidepressant. However, with the benzodiazepine, I found myself looking forward to the times where I knew that was going to make me relax.
James: Which is understandable, isn’t it? Because for anyone in distress, whatever it is you need to help relieve even a tiny percentage of that distress, of course you’re going to use it, aren’t you?
Gemma:Yeah, and you know, it was a fairly low dose of benzodiazepine that I was given, too, and that remained constant throughout the seven years I was on that as the same time I was on my SNRI.
James: And Gemma, did you change the dosage of your antidepressant during that time or did that stay constant?
Gemma:It was constant; it was the same dose as the day I started it, to the day I decided that I needed to start tapering from it.
James: And so what was it that made you come to that decision to stop your drugs?
Gemma:Well, about halfway through my course on the SNRI and benzodiazepine, we had moved from one town to another. Obviously, that is an all-encompassing task, so taking my medication became part of the background; it was just a given, and so I had not really planned to get off it until it became apparent that I had to or something else had to be done. During 2012, my health started to destabilize to the point where I was getting heart palpitations, I was experiencing anxiety and panic attacks for which I had no reason to experience. There was no situational component to it. First of all, they became annoying and then they started becoming very distressing because I could not predict at the point when they would happen. My husband I came to realize that it was the medications that were causing this. Ironically enough, it was Christmas Day 2013. We looked online because I had another episode of this panic and [it was] a frightening experience. We looked online and my husband said, “You know, if you were anybody else, I’d think you were going through withdrawal symptoms from [an illegal] drug. That’s exactly what we saw.
Gemma:And so I did treat that as a gift, considering it was Christmas, and that was the start of my journey to remove myself from both the benzodiazepine and my SNRI.
James: And Gemma, can I ask what process did you follow to come off your drugs?
Gemma: Well, I was very uninformed with the benzodiazepine part; I did that one cold turkey. I do not recommend that for anybody. That was a very dangerous several weeks.
Gemma:I had about six weeks coming off of that and it was not fun. It was more or less speed dating for the symptoms of coming off of my SNRI.
James: That is a lot of physical and psychological stress to put your body through.
Gemma: It is, and I asked my GP about it at the time, and he was – now, mind you, the GP that I saw right after we moved to our current location, he was nearing retirement and paid no heed to the experience or reports of difficulty coming off these medications. I specifically asked him, “On these two medications, what have your patients said?” I already chose to forego the, “Do you have any patients that have experienced this?” No, I wanted to know what did the experience?
And he brushes me off. He’s like, “No, these people get on and off these drugs all the time. You have nothing to worry about.” Well, that does not answer my question. No. So when I had stabilized to the point where I was ready to start tapering from my SNRI, I had some vague notion of yes, this may be a little troubling. I had no idea what I was in for.
I did not have the resources at the time to know of any specific plans to come off. I thought that starting with 60 mg for my full dose, I would go down 10 mg a month. That was too fast.
James: That is still quite a drop but as you say, with no guidance, anyone could think that that was a reasonable change to make.
Gemma: No, and I was completely flabbergasted at how much I suffered. This was the hardest thing that I have ever had to do. What happened was when I did follow the month-at-a-time 10 mg down until I got to the 20 mg point, I had to hold at that dose for an entire summer.
Gemma:So my body could catch up before could even entertain the thought of, you know, taking out the beads, counting them one-by-one, and putting them back into my capsule. Because with this particular one, those beads, you have to have the enteric coating; otherwise, they will damage your GI tract. It took me nine months to go from 20 mg down to zero, and even then, it was not a gradual taper. Like I said – I was ‘off-roading’ quite a bit when it comes to trying to figure out how do I balance my withdrawal symptoms and still make progress?
James: Well, you’re right because life goes on and you still have to function. Trying to find a rate of decrease that doesn’t put you in bed for most of the time, especially for you with two young ones and particularly one that needs special support, that must have been a huge amount of strain on you.
Gemma:Yes, and I could not imagine going through this process when my children were younger. They were just to the point where they were becoming more independent and my son’s health had stabilized to the point where he is just like any other kid. To the untrained eye, he is typical. It’s only unless you’re an expert in childhood development and education that you would denote the differences, really. But between him and my daughter, they were both mature enough where I could also tell them what was going on.
James: That’s important, isn’t it? Because it’s sometimes very easy to leave out the people closest to you who are seeing you suffer over a long period of time and feel bad that they can’t help.
Gemma:Yes, and that’s the thing: I didn’t want my children to make up stories in their head and fill in the blanks as to why I was not doing well. I did not want to scare them in that way. And secondly, I thought them knowing what was going on, this is one of those lessons in what it’s like to medically advocate for yourself, and I thought that was an important lesson for them.
James: Very much so, and I think you were wise to share that with them. And Gemma, during that last nine months of reduction, was there anything in particular that you really found helped you during that process?
Gemma: Yes. There are a lot of supplements that you can take; vitamins and supplements, that otherwise the process depletes: magnesium, fish oil, B vitamins, lots of water. I was able to adjust my nutrition so that was not the sugar monster anymore.
Gemma: Those cravings started going away very quickly – and I also gave up soda. Carbonated drinks, even the diet ones or caffeine-free ones, they’re full of chemicals and they influence your hormones and digestive process to the point where, you know, that was a game-changer when I gave up soda.
James: That’s very interesting, and I can certainly see that there’s so much chemical assault already going on in your body that the last thing that you want to do is add more to it. That’s not something that I’d previously considered.
Gemma: Yes. Clean eating is probably one of the best advantages that you can give your body. Proper hydration – more than just the eight 8-ounce glasses of water a day. Try to go for more than that. One thing that surprised me the most is that I realized with the symptoms and everything, it’s not one of those things where you can snap out it. But the power of positivity and using a sense of humor, even to the point of going on YouTube and watching silly videos, that will change your chemistry. Just surrounding yourself and trying to hack your brain with positive thought can take the edge off of symptoms. I’m not saying it’ll happen 100% of the time, but in some circumstances, it could be the thing that gets you through the moment.
James: I agree, and I’ve certainly felt myself that when I’ve engaged with the symptoms and I’ve given them attention, they’ve become unbearable. But when I’ve become absorbed in other things and distracted myself, while they haven’t disappeared, they’re not as in control or dominant as they were.
Gemma:Yes, and part of it is trying to find that sweet spot – that little Goldilocks spot where yes, you are distracted enough just to make it through the symptoms. I found that with my work also. I work from home doing my own business, but I’ve had to turn away a lot of business too, just because of the days where the symptoms were really bad. But if I could balance out with doing maybe a half hour, hour of work on the bad days, I could do it. But too much stress, too many deadlines, that would send me into a flare of symptoms again.
James: I can understand that. And Gemma, where are you in the picture now, having done incredibly well to give up both a benzodiazepine and an SNRI antidepressant? How are you now and how do you look back and reflect on that experience?
Gemma:Well, my last bead of my SNRI was May 4th, almost two years ago. I figure that about – I’m at about 95% functioning. My leftover side effects are occasional panic attacks. I still get periods of withdrawal, the “windows and waves,” per se, and the constant is body pain. It’s not a matter of getting older; I’m in my early forties right now. But I still get pain and I never had that before.
Let’s see…actually around New Year’s this year, I had my most significant withdrawal flare, and it lasted for about ten days. That was brought on by doing a cleanse, even apple cider vinegar in water. That set it off because my SNRI is – the toxins from that are held within the fat cells.
Gemma:And so if the apple cider vinegar released fat at the cellular level, that shoved me right into withdrawal again. If I were to look at the – I did kind of like an autopsy of that last flare of symptoms. The way it hit me is that the anxiety would take hold first. I would get the muscle aches, the tight chest, the breathing difficulties. Obviously, looking through the lens of anxiety, I tell myself, “Oh my gosh, am I having a heart attack?”
Gemma:“What is wrong?” Because see, you feel like you’re dying when you’re having one of these episodes.
James: You do, you’re right. And you can’t ignore it, because the human body is designed under extreme stress to put you in a state where you cannot ignore the danger, even when it’s coming from within you.
Gemma: Right, and I visited my current GP, the one that had replaced the first one who had retired. Luckily, she understands my perspective and respects it. I wanted to find answers and try to measure and quantify why I was feeling this way with that last wave of withdrawal symptoms. My bloodwork came back fine and we both knew then this is what it was.
James: Yeah. Well, I’m pleased to hear that you’ve managed to find medical support that at least has an appreciation that these drugs can do this, even after some time, because I still think that there’s the perception generally that you take a tablet and when you stop, you might have a bit of a rough time for a couple of weeks, but it soon clears up. But that’s really not the case and I just wondered, Gemma, given your experiences and what you went through, if you had a colleague or a friend or a family member who was thinking of taking an antidepressant and came to you for advice, what would you say to them?
Gemma: I would say to focus on your nutrition, exercise, and hydration and mineral levels first. Exercise alone is both an antidepressant and antianxiety pill in one, even if it’s just getting outside to walk and in the sunlight. It can benefit you. See, my blind trust in Western Medicine has been shaken because of this; it only goes so far. And yes, I realize to pop a pill is the easiest, most time-saving measure. But it doesn’t solve your problem.
James: You’re so right! It doesn’t, and it seems easier up front, but we all pay for it later without realizing at the time the drug is prescribed.
Gemma: Yeah, if I had to do it all over again, I would’ve asked for a referral to a cognitive behavior therapy specialist just to learn tools that I could use forever and not just mask what I was feeling. Also, I know that doctors do tend to shove people on antidepressants and antianxiety medications, and part of me has to wonder, is that to effectively use the time in their office? Because I respect that they are short on time too. However, is this a strategy they use to help combat that? I just don’t know.
James: It seems that way, doesn’t it? In my own experience, it was very similar. I think I had between five and seven minutes with my GP before I was described an antidepressant and I walked out without any knowledge of what I was getting myself into.
Gemma: Yeah! Another caveat to this is if your doctor is recommending something or gives you a prescription, look it up first to see if there’s a support group for that particular drug. Because if there is, then at least you know what you’re getting yourself into possibly. Otherwise, you don’t really know unless you do your own research.
James: You don’t, and I think that’s a really good point. And again, even if you read the patient information leaflets, they’re pretty benign in terms of, you know, “One percent might suffer this effect, and if you do try and stop, do it slowly…” But it really doesn’t cover anything like the range of experiences that people have taking or stopping these drugs. And Gemma, was there anything else that you wanted to share with the listeners?
Gemma: Yeah, if I could address it to parents of children with special needs…obviously, we live moment to moment and we just don’t have enough time during the day. And I can understand that we’re looking hacks and shortcuts. But, you know, after eight years of being on these meds and nearly two getting off of them, it’s not worth it. The reason why I shied away from talk therapy is that it’s just not possible in some cases to find respite or that type of coverage for your children so you can go to these appointments. I think that’s something that’s sorely lacking as a resource for parents if their children are young or if their circumstances are such that they cannot get out of the house much. There needs to be a change at the institutional level for medicine that addresses these particular needs with families.
James: That’s such an important point to raise. Thank you. It must be so difficult to find treatment that isn’t medication that, as you say, can fit in with your role and responsibilities as a parent to a child who does need particular support. Gemma, you’ve been absolutely brilliant. I’m so grateful to you for taking the time to share your experiences with me for the podcast. Thank you.
Gemma: Well, you know, I have to say you’ve done a great job with this podcast so far. You’ve got this together and I really appreciate it, just the opportunity to do this interview, because our society needs this. They need to know.
James: They do, thank you. And this podcast only works because yourself and others like you are brave enough to step forward and say things that are really tough for me and I want other people to hear that. And it does help people to hear real experiences. I was frustrated myself that I couldn’t hear other people and get a real sense of what it was like to take and withdraw from these drugs. I’ve painted myself into a corner where I thought, it must just be me, I’m weak, everybody else is having a wonderful time on these drugs, and I’m having a terrible time, so it must just be me. The podcast really was an attempt to reach out not just to the community that has knowledge of this, but I’ve also been contacted by people who’ve had no involvement with psychiatric drugs who said, “I really didn’t know this was the case. Thank you for letting people share these experiences.” But it wouldn’t work without you and the others who are willing to be part of it, so thank you.
Gemma: Well, thank you.
James: Well, I found it enlightening talking with Gemma today and I’m sure you did, too.
James: Thank you so much for getting in touch and giving me your feedback and comments. I just wanted to share some of that feedback wit you.
Firstly this is taken form a recent email:
In my years of my interaction with psychiatry I started to feel disempowered and dissatisfied with the drug reliant treatment on offer. It seemed to me to be a none progressive way to deal with my mental health and if anything I felt stuck in a drug limbo of apathy and ill health. Greater patient participation has to be front and centre when it comes to treating mental distress but we need a more honest dialogue between doctor and patient about the potential consequences if they choose to follow the medical route. All too often patients don’t have the information they need to make that informed decision.
And these comments taken from the website survivingantidepresants.org
James, I have loved all of your interviews. You've done a great job lining up the members of the small group of courageous experts who are willing to speak out against the party line and expose what these drugs are really about and the harms they are causing so many people. But it is great that you are also including ordinary folks who share their personal struggles and the horror show they've gone through, and the damage, albeit temporary, that has been done to them simply because they want to get OFF of the merry go round of drugging. I especially enjoyed Megan's recent interview, and I look forward every Tuesday to the next one. It is, to me, so good to hear people stating out loud "the unspeakable" truth--that our entire mental health and psychiatry system is built upon the shifting sands of lies and greed and iatrogenic harms. Thank you for doing this.
James, I just listened to your podcast interview with Dr. Joanna Moncrieff. I hadn't heard about the RADAR study and as a long-term antipsychotic survivor myself, I'm very happy to hear that antipsychotic withdrawal is being researched. I think this kind of research holds great benefits not only for folks on antipsychotics, but also for antidepressant and benzo survivors for the simple reason that if antipsychotics aren't needed for the most serious of mental distress, are drugs really needed for other forms of mental distress?
Also, since antipsychotics are often used as adjunct depression treatment for what is now labeled "treatment-resistant depression" and "bipolar depression," this research will hopefully open the doors for research into the antidepressants. It wouldn't surprise me to find out that many of the people on antipsychotics in this study were first on an antidepressant that sparked a psychotic or manic episode. Since the RADAR study is being funded by the UK government's National Institute for Health Research, it's clear that more and more researchers and doctors are becoming aware that something has gone terribly wrong with these drugs.
I have gained more information about these drugs from pharmacists than doctors. My last pharmacist had a very emotional reaction when I told her I was off all of my drugs and she told me about her own experience with Xanax, which she was prescribed for several months after having surgery. She said way too many people are on these drugs and the withdrawal can be nothing short of horrific.
Well thank you so much for all of your feedback and your support too. There are medical professionals out there who understand the risks associated with the drugs and more and more are coming forward and willing to talk. It’s clear that we need a radical rethink in our approach to mental health, the drug based model of care is deeply flawed and harms more than it helps. Thank you to all of you for helping me to get the message out.
Just to say also that if you are struggling with withdrawal yourself, you can visit my website jfmoore.co.uk where there are links to information that you may find useful.
Thank you so much for listening and please come back next week for another episode. Until next time, take care.
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