Editorial Note: There are two reasons to run Katie B-T’s story here. One is the phenomenon of burning feet she reports. This seems common with benzodiazepine like drugs, including gabapentin and pregabalin. We would love to hear from others who have had problems like this – how long did the problem last, what helped if anything.
The second reason is to launch the Notes on Antidepressant Withdrawal to Take to Your Therapist. Katie was one among many people who have reported the benefits of Altostrata’s website Surviving Antidepressants. But she felt that there she needed more than peer support for tapering. She needed time to get to grips with the issues – she needed some motivational interviewing support which might lead someone to a therapist. But therapists have few good ideas about withdrawal – they can insist withdrawal is all mental which is not true or abandon the person who seeks their help if the therapist can’t help and decides the problem is physical and they couldn’t help anyway.
The Notes are something to present to a therapist in an effort to let both you and her get to grips with the question of whether she can help you or not before either of you waste valuable time.
If you use the Notes please let us know how your therapist reacts. If you are a therapist and have views on these notes please let us know. Katie’s story for instance brings out a number of elements that could be built into an expanded set of therapy Notes in due course.
My story
After 20 years on antidepressants, I decided I wanted to taper off. It was important for me to see what life was like without them and if I could claim more of my sexuality. I had no idea what I was in store for.
I sit here now 16 months after my first step down, persisting in my journey and stronger for it. I developed akathisia from the withdrawal and was hovering around in a crisis state. More medicines were added including gabapentin and Horizant so that I could remain in my own skin, so to speak. Yet I am on less of the SSRI than when I started and I’m tapering off the other medications.
I also developed interstitial cystitis, perhaps related to the SSRI withdrawal.
One of the worst problems was a burning sensation in my feet triggered by physical activities, due to gabapentin and Horizant withdrawal, I think. When I walk, even for short times, my feet burn and I feel body aches and pains, have headaches and heart palpitations, as well as extreme fatigue. It’s slowly getting better. Today is my second day back exercising. My feet still burn but I want to re-claim this aspect of my life.
Going to a therapist
In addition to these physical symptoms, my stress tolerance diminished dramatically, coupled with increased feelings of shame. I decided to go to psychotherapy. Some of these psychological symptoms are likely enduring stress effects or legacy effects from the withdrawal.
But the shame and emotional acuity is “me.” The emotional dampening effects from the SSRI’s were lifted and I felt like the bottom fell out. Having lived through a near crisis state for several months also took a big toll. I was alienated from what used to be the core of myself, what felt like my home base. Without this grounding, shame took over. Developing acceptance, the antidote for shame, involves seeking clarity for what is and holding this with compassion.
My therapist said he “wants to understand me and work on things together.” Not only a joining statement for the therapy and some of my newly awakened interpersonal dynamics, but just what someone going through antidepressant withdrawal most wants to hear. To be heard and supported. A skillful therapist doesn’t impose what the client “should do,” forcing their will—much like many how interactions with the medical establishment go. Nor does a skillful therapist sit back and passively agree with how terrible the client’s life is. Rather, my therapist says that “everything on your mind is important, but to talk about thing things that are the hardest, the most anxiety provoking.”
So I push myself, to be real, to show him parts of myself that I keep hidden. And when I do, I have the experience of a supportive other seeing and kindly being with me. Facing my core seriously weakened has given me the opportunity to build an even sturdier one, one that is more alive. My therapist also took an interest in the literature I discovered from RxISK.org, sat with me when I was crying from migraines, and never questioned that what I was experiencing wasn’t happening. He has been someone in my corner.
Slow progress
So did I get what I set out to do? To have more access to my sexuality? I am fortunate to answer “yes.” I notice guys and not only logically “think” they are cute, but now I “feel” they are. I have sexual fantasies. I want to connect and be intimate with a partner.
Here too is where psychotherapy helps. I started SSRI’s when I was 12 years old. I haven’t gotten to try out and experiment with what I like and don’t like in relationships with the new feedback my body gives me. Some of my interpersonal dynamics related to my sexuality never got worked out because I didn’t know they existed. Now I have support to explore these concerns in therapy, playing catch-up, but knowing that I won’t have to go through life missing out on this important part of myself.
See the follow up to this post – Doctors and Withdrawal from Antidepressants.
Illustration: Is There Life After Meds?, © 2014 created by Billiam James
Ruth says
I live in the uk and therapy provided by nhs is poor to say the least, At my own request I went to cbt therapy to try and get some help after suffering very badly from Seroxat withdrawl for many years.I was given 6 half hour appointments and my therapist new little of withdrawl effects.However I persevered thinking some good may come of it .The first 4 sessions were the therapist telling me how cbt can help.The 5 th one was me starting exposure therapy for my original problem which was agoraphobia. after successfully completing 4 journeys down my road I was then informed that because most of my problems were physical ( ie, poor balance,) that she could no longer help me. So therapy may help if you get a therapist who is interested and here in uk that costs quite a bit.
Lisa Bloomquist says
Thank you very much for sharing this story! It is so valuable. Medical practitioners need to know how to recognize both adverse drug reactions and withdrawal symptoms. Too often, people are abandoned by the system that hurt them.
Symptoms of fluoroquinolone toxicity are quite similar to symptoms of Benzo withdrawal. There are stories of hope and healing from FQ toxicity on http://www.floxiehope.com. Perhaps they can help.
jon wilcox says
The principle of reassessing CRPS, FM and postmyelopathy pain syndromes after stopping meds must be differentiated from true tolerance and withdrawal symptoms. We must not simply blame symptoms on drug withdrawal without at least appreciating the reasons that such potential neuropathic pain modifiers might have been utilised in the first place .. Often they are used simply because the patient is desperate for better pain control. The same spurious arguments could also be used after discontinuing intensive TNS modulation but would we blame the device ?
Dr. David Healy says
JW – There was no issue of pain control in the first instance. My hunch is that what used to be called causalgia and linked to alcohol use may also be something that can be triggered by tranquilizers.
Causalgia – burning feet – is reported to be much more common in women than men but women drink less than men making the alcohol link somewhat tenuous. DH
F98 says
I’d say there are a number of possibilities that need to be considered. Anytime one uses a CNS active substance for a prolonged period, there is at least a theoretical possibility that effects seen upon withdrawal are due to the systems inability to adjust to the absence of a modulating agent that it has acclimated to.
On the other hand, many CNS disorders occur spontaneously in the population at a reasonably high rate. If the drug masks the symptoms of the disorder, these may be experienced for the first time upon withdrawal. An elderly man with severe RLS who stops taking Mirapex after 20 years may experience symptoms of Parkinson’s disease. It’s plausible that this is a withdrawal symptom, but the cumulative risk of having developed PD over the previous 20 years is over 1%, and Mirapex masks the symptoms of the disease. Stopping the drug will make the underlying disorder apparent, but the drug is probably not causative.
Twenty million American kids get vaccines each year, and 240,000 are injured in car accidents. Running the numbers, roughly 350 kids a year are injured in auto accidents on their way home from an vaccination appointment. The vaccination did not cause the auto accident in any medically meaningful or actionable sense. But in 2009, GSKs influenza vaccine did provoke narcolepsy in a very small fraction of those who received it. Good epidemiological science and common sense sometimes distinguishes cases of each type, in other cases knowing is impossible or nearly so.
It is the drug industry’s habit to respond to all of these syndromes with automatic denial of responsibility. On the other hand, many assume iatrogenic causality by default. Neither is good science. Neither is helpful to patients.
Barry Haslam says
It is 28 years since i withdrew myself from 30 mgs of Ativan daily prescribed by my then GPs and (amongst other injuries ) i have been left with neuropathic pain in my right knee, shin, ankle and toes. The pain is as if my right leg is trapped in a vice with needles, being pressed into the flesh and bone. Just after withdrawing myself, the pain was so intense and debilitating that i attended Manchester Rheumatism Hospital for a check up on possible rheumatic problems ! However i was informed by letter “That my pain was caused by withdrawing from massive amounts of benzodiazepine drugs and there was no sign of rheumatism.” 28 years on and the pain is still in my right leg and variation in cold and even hot weather increases the pain intensity.
Katie B-T says
Gabapentin and horizant started in late nov/early dec 2013 for akathesis from ssri withdrawal. March 2014 began getting off gabapentin and horizant and that’s when burning started. No neuropathic pain before. Age 33.
Nicki C says
I noticed your comment and wondered how you were feeling now? I tapered off of gabapentin recently because of horrendous side effects… And I have suffered burning all over which has slowly subsided but have now developed terrible painful and burning feet… I really hope your symptoms have now gone.. I really hope mine will … I am also left with burning on my left forearm .. Big love x
Dr. David Healy says
From Christine Bell
I am having therapy for CFS which is to me the same as CBT but they work on the symptoms that I have, which are very similar to CFS. The first two sessions I hated it and could not see the point. On the third session it started to make some sense. By the fourth session I had stopped dreading it and was looking forward to it. The therapist is helping me to see that stress is a big problem and to do relaxation, visualisation and deep breathing. She has taught me to change some of my thoughts on how I cope with other people, not to get upset by them as this adds stress to me. She has gone through visualisation with me and I am keeping a diary and this week it was going through it to see how I can add rest periods in during the day to help me to have more energy. I was given 8 sessions of 1 hour but have had at least 1 hour 15 minutes each time, she is never in a hurry with me. At first it was going through each paper she has on each bit but by the 5th session I was just talking and asking questions which she does not know the answers to seroxat problems but is helpful on the stress intolerance. Therapist is also referring me to a dietician for the food intolerances I have. This is NHS and I am now glad that I went. No one could have been more against it than me, thought waste of time, but I don’t feel like that now. I do think that you need to get on with the person who is doing the therapy.
Anne-Marie says
Well I hope you don’t end up destitute and alone after telling your story like I did. I cant get support from any where now, I cant even go onto the forums any more. Your lucky you have a good therapist.
Christine Bell says
I don’t understand why I would end up destitute and alone from the therapy, either they can help me or not. So far what I am being told makes sense to me. Also why cant you go onto the forums now
Jean says
Would love to be able to “go to a therapist” to get help with all the emotional avalanche after getting off the intolerable Rx I took for many years===and there was a constantly changing variety, all of which had their own hideous side effects====However, I have never been able to form an adequate therapeutic relationship with a counselor BECAUSE….drumroll, please>>> when I trusted someone years ago and wanted to work through then current situations and resurfacing issues of past abuse, I was sexually assaulted by my therapist! It left me with ongoing PTSD issues towards therapy. I hope there are some good therapists out there. I’d like to believe there are, but, unfortunately I don’t feel inclined to find out any longer. I don’t want to try to make that relationship work when I know that it will not. I tried with many different therapists–both, men & women– after that inappropriate incident and the trust factor never re-surfaced. At least now, I recognize why therapy doesn’t work out for me. I may seem”non-compliant” to some ppl who don’t know my story but … and, concerning Rx; I have experienced multiple adverse effects and no longer take them. Oh, by the way, the therapist finally lost his license because of his behaviors towards female patients. I live with moderate depression and take comfort in creative activities and pets. I am continuing to re-cover from the failed Rx treatments and their side effects. I have been Rx free for over 7 years and functioning mentally better than on psychiatric meds including some of the drugs mentioned here. Withdrawal is certainly slow going. My reading level and attention span have not yet returned to pre-medication levels but slowly improves. I suffer chronic tinnitus and multiple muscular and joint pains, and low energy. (Some arthritis did show via x-rays when last I had them.) I sometimes wonder what my life would be if I had never been acquainted with psychiatry or its remedies and can’t help but believe it may have gone better. It seems to have wasted much of my time. Oh my goodness, the industry must change for ex-patients to think such a thing! Thanks for giving those willing a place to speak.
Altostrata says
Please note: SurvivingAntidepressants.org provides support for tapering off drugs. While we are a supportive and sympathetic community, we can’t provide psychotherapeutic counseling per se.
SurvivingAntidepressants.org is not a support site for conditions with psychiatric labels such as “depression” or “bipolar disorder.” It is a support site for people who want to get beyond treatment with psychiatric drugs and are willing to take the responsibility of dealing with emotional distress, whatever its configuration, with non-drug methods.
We encourage people to seek the non-drug method that works best for them, including psychotherapy.
If someone comes to SurvivingAntidepressants.org wanting information about tapering or withdrawal symptoms, we can provide what we know about. One thing we do know: The more drugs you add, the worse your problems may be with adverse reactions and drug-drug interactions.
Now, some people strongly believe in the common psychiatric practice that treats a complex adverse reaction problem by adding another drug. They are always trying to mix the perfect drug cocktail. What we’ve seen is, if you keep on changing your drugs, you add more complexity that can make it difficult to tell what drug is causing the problem. And the problem is seldom solved.
Our motto is “Keep it simple. Keep it slow. Keep it stable.”
We acknowledge that minimizing the entire drug burden, rather than quitting it entirely, might be the best route for some people.
People who are not ready to taper are welcome to consider it as long as they wish, or return when they’re ready to taper. No one is pressured to go off drugs if they don’t want to. But they are encouraged to reconsider any biopsychiatry assumptions they may hold.