Tapering off of xanax is the hardest thing that I’ve ever done.
I have been sexually abused, raped, beaten, kicked out of my home when I was 16 and pregnant, forced to have an abortion, cheated on, been ignored, laughed at. My house has burned down and I lost absolutely everything I owned. I’ve huddled over my children underneath a water pipe in the basement as a tornado went over our house – twice. My oldest son was born 2 months premature and we both nearly died in the process. My youngest son was born and immediately started having seizures from withdrawing from a medicine that my doctors told me I needed to take and wouldn’t hurt my baby.
Xanax withdrawal is harder than that.
At my highest dose I was taking 12mg a day of Xanax. That is A LOT. I had been going along just fine, really, and then my life fell apart when I developed a severe phobia of the only transportation available to get to my job – a ferry. Without the ferry there was no way to get to the city to work. I had 2 major panic attacks every day while trying for months to overcome the phobia – one in the morning on the way to work, and one in the evening on the way home. It was a 45 minute ferry trip each way, and the entire trip was spent hiding in a bathroom, sitting in the First Mate’s office, laying down on a bench, or hiding in any other way that I could find – even in stairwells trying to convince myself that I was in a building that wasn’t moving, and not on a giant steel boat in the middle of the water with no chance of rescue should I drop over and start to die. At that point I had been having panic attacks for about 16 years, since the age of 19. I was taking 3 to 4mg of xanax a day, but quitting that job in the city brought a whole host of new stressors into our lives.
We couldn’t afford to live in our nice house anymore and had to move into ex-military housing that had been remodeled into small, ugly, cramped living space with really scary neighbors. Our car was repossessed in the middle of the night and the tow truck driver threatened to hurt me because I honestly did not know where the valet key was. My husband’s job was in jeopardy because of the many, many days I begged him to stay home with me and not leave me alone to deal with the panic by myself. One night it became too much and I had – truly – the worst panic attack to date. I called 911, and I had never done that before. I was absolutely certain, without a shadow of doubt, that I was going to die. I made my husband put our youngest son, who was 5 years old at the time, in his bedroom with the door closed and a radio on so he couldn’t hear or see the paramedics. I did not want him to witness his mother’s death.
Obviously I didn’t die, but my husband did find a Psychiatric Nurse Practitioner that was able to see me fairly quickly. From the 3 to 4mg of Xanax per day that I was taking, she immediately bumped me up to 12mg per day. 2mg every 4 hours. I continued to take that dose for a while. I had no life, but that wasn’t unusual. My husband had to keep a chat window open at work the whole time he was there and talk to me if I needed it, and I needed it.
Eventually I was able to taper myself down to 8mg per day, and it was really difficult. The lack of Xanax was causing withdrawal symptoms that were like anxiety on steroids. Horrible headaches, nightmares, tremors, constant…constant shaking and body aches. It was pretty bad. But now it’s even worse. I was on that high dose of 8mg of Xanax for nearly 7 years.
When I quit my job, and got through my final two weeks, and just before my birthday that year, I promised myself that I would keep busy. My first day of not working I went into the Obama campaign headquarters in my town and volunteered for the phone banks. Nobody was very friendly and I felt extremely awkward, which led to anxiety, and so I just never went back out again. I pretty much didn’t leave my house for the next few years. I couldn’t get further away than 5 blocks – and that had to be in a car, in the passenger seat, while ONLY my husband drove. Not that I knew anyone else that would drive me someplace anyway. Or…knew anyone at all for that matter. So, basically for the past near 7 years I’ve been inside my house and not even looking outside.
The PNP (psychiatric nurse practitioner) only refilled my prescriptions and sent me “Lighten Up” forwards from a hypnosis-based weight loss clinic. I received no therapy other than medicinal. Obviously I didn’t get better.
And then things started getting better. We moved into a nicer home for two years, but our landlord was literally insane. She was a psychiatrist, but retired. She was constantly coming by our house very drunk, but because my father had been an alcoholic I knew it was more than just alcohol. Then she talked about the pills that she took. Ahh, mixing drugs and alcohol certainly would explain her psychotic calls and emails to us. Wild accusations of killing 40 year old Clematis (that had been dead many, many years before we moved into the house.) Constant threats. We were being terrorized and felt trapped. Then her husband committed suicide and that is when we knew we really had to do the healthy thing and get the hell away from her, but the problem was that we couldn’t afford any of the houses on the island we lived on. Amazon had come into Seattle expanding more and more, and this bumped up the price of rental houses an insane amount. To move into a rental unit you need first and last month’s rent, and a deposit in the amount of the rent, plus any pet deposits of $500 each. Also, good credit. (Ours had been ruined because I had quit my job.)
A week before our son was scheduled to start 5th grade we found a house in the next town over. This was a HUGE relief because we had given our 30-days notice of intent to vacate, and had found a small apartment, but that fell through at the last minute so we were looking to my husband’s friends and asking for help…we were facing living in a basement, but we were okay with that – anything had to be healthier than staying in that house with the crazy landlord.
It was $1,650 per month, though. How do you come up with over $5,000 move-in costs when you’re absolutely broke? You do what we did, if you’re lucky enough to have that option, and cash out of your 401k, and you get enough extra from that loan so that you can also buy a car (even if it was at a “We Finance Anyone, But Prepare to be Ass-Raped!” places.)
Suddenly we had a very nice house again, and a very nice car. Sure, the car was older, but it didn’t look it, and that made us feel like decent human beings again. We thought things were starting to really get better, and I suppose that they were for a while.
A few months ago, just after the 4th of July, I started working again (for my sister, as you can read in past blog posts.) That made me start to feel really useful, and at that point I had been seeing a psychologist for Cognitive Behavioral Therapy for about 2 months. I was starting to really push HARD to step out into the world. And I did make progress. I was able to – for the first time in 15 years – drive by myself. Yes, it was only 3 blocks, but it was progress. The panic attacks continued, though. Then, the shit storm hit. My PNP found out that I was seeing a psychologist and they happened to know (and hate) each other. This infuriated my PNP and she decided that she wasn’t going to prescribe me Xanax anymore, so she needed to taper me off of it very quickly. I’ll keep this very brief and only say that she had me go down 4.5mg in 2 months and I seriously thought it was going to kill me. The CBT stopped helping and my sister had some sort of psychotic break and lost the business that she was taking over, meaning that I lost my job as well.
Back in August I could not reach my PNP to get a refill of Xanax. I called well in advance to both her office and cell numbers and left messages. I sent emails. The pharmacy faxed in two refill requests that went unanswered. The last call I made to her – the last message I told her that I only had 3 doses of Xanax left and because it was Friday night, and I knew she didn’t work on the weekends, that it would mean that I would have to go to the hospital if she didn’t “PLEASE!!!!” call or fax in my prescription, and that I would be completely out of medication on Sunday morning. Still no response.
I ended up going to a local Urgent Care center in a panic, and the doctor there very kindly gave me enough xanax to get through to where I could see a new provider. My husband had made an appointment for me for 2 weeks from then and it’s a real miracle that I even was accepted as a patient. There simply aren’t enough mental health care providers to treat the number of people in our county. Our county has nearly doubled in size in the past few years, but mental health care providers are all either retiring or over-booked. I was turned down by 10 other doctors. Turned away, I should say, with no ideas from them on who else I could try or where I could go. So yes, it was amazing that I was able to find this new doctor, and even more surprising that he was an actual psychiatrist, and only in his 40’s – not ready to retire any moment!
My old provider had terrorized me for years. Always held the threat of withholding my medications if I didn’t do or say exactly what she wanted me to do or say. It was truly awful. When I first saw my new psychiatrist it was such a huge relief that I cried. He was kind. He was compassionate. He halted the Xanax taper and allowed me to stay at the same dose for another month before planning any further reductions. I was able to breathe again and feel a sense of hope.
And then my old provider emailed me. I got the email this morning with her acting as if nothing had ever happened. She had attached a prescription to the email; a copy of the prescription that she had sent to Rite Aid. I do not know why she would think that she was still my provider after she failed to do any providing, and after the voice mails that I left for her, but yep…there it was. An email from her. Oh, and the best part was that it was for doses to be taken starting on September 31st. (Wtf?)
Needless to say I was angry. When I get angry I get very anxious and my heart starts pounding really hard and fast, and I get really hot. That was the state I was in when I wrote back to her with this:
I literally thought you were dead.
That you sent me this email with this prescription is so completely baffling that I am going to have to forward it to my psychiatrist to review so that they will know exactly what I’m talking about at my next visit when I am learning to deal with the anxiety that you, personally, have caused me. I do not say this out of anger, but rather with complete sincerity.
Then she wrote this in return:
I telephoned you several times last month and spoke with your son. Did you not get the messages?
And my final response to which I am hoping she doesn’t reply to…and keep in mind that I was incredibly angry and anxious when I wrote this, so I realize that there are a few typos and it may be a bit disjointed, but I had never spoken to her (or anyone!!) like this before because I was terrified that she would stop treating me. (And my son, but that’s a whole other story!)
My cell phone log only shows 1 call from you on 8/21 at 12:37pm and I was at work that day. My son may have answered the phone, but he passed along no information. The last voicemail I got from you was on 7/16 and it had no useful information other than “I called.” in it. Prior to that, the last two times you dialed my number was 7/16, and 6/2, both times I responded via email, but received no follow-up from you.
The last time you called our home number was on January 13th.
So, not several calls last month, but only one where you did not even make contact with me. You didn’t respond to two faxed refill requests from Rite Aid, and you didn’t ensure that I had a prescription for when I was scheduled to have finished the previous prescription of Xanax even though I emailed as well as left voicemails on your office phone and your cell phone requesting a refill.
As for emails – the last one you sent to me before today was June 24th, although I emailed you on 7/3 and 8/20 with concerns, but got no responses.
Were you trying to rely on a 12 year old boy who you know is being treated for attention difficulties to relay very important information regarding my medication with that call on the 21st, or was it to simply say that you had called and assumed that he would tell me? Regardless, no. I did not receive any “message” that you may have left with him, which is why I took the pharmacist’s advice and went to Urgent Care on Sunday the 23rd. The prescription that you attached to your email this morning says that it was written out on 8/26, which makes no sense to me since you say it is for my “next prescription” on 9/31? The 31st of September isn’t even a date that exists.
It was with a great deal of effort that I was able to see xxxxxxx xxxxxxxx at xxxxxxxxxxxx xxxxxxx and explain my situation and be referred to the section head/psychiatrist at xxxxxxx xxxxxx. He described the tapering schedule that I had been following as quite aggressive and completely unnecessary. I will continue to see him for treatment, as well as (my psychologist for CBT), and taper at a more realistic and less aggressive rate, as there is no apparent rush to take me off of xanax after taking it daily for 24 years, especially as I do still actually suffer from what he referred to as the worst case of panic disorder with agoraphobia that he has encountered in his career.
Therefore, you can absolutely call Rite-Aid and cancel the xanax prescription you may have faxed to them with the understanding that you are no longer my mental health care provider.
So, yeah…a tad furious.
I really hope that she doesn’t write back because I’ll panic if I see a response from her in my inbox. I would think, though, that if no email comes tomorrow that I’m in the clear and can put her in the past where she belongs, and really start to heal from having taken such an extremely high dose of Xanax for so many years.
To be honest, my psychiatrist said it may take up to 3 years to completely taper me off of Xanax, and that worries me, but at least the cuts are only a quarter of a milligram a month instead of a half a milligram every two weeks. He said he has a lot of experience tapering people off of doses of 6 to 8mg a day, so I’m grateful for that. I had described all of my symptoms of withdrawal and all of them are normal, thank God, and my big question to him – would my short-term memory ever recover? It will. What a relief.
But let me say again that even today, at this point, the withdrawal symptoms are really fucking terrible. There are times when I can’t type because…well, I just can’t! My brain simply doesn’t work. Noises become ROARING loud and I cannot hear what my husband is saying to me. I am in a constant state of elevated anxiety – it just simply never stops. Ever. The shakiness never stops. Off balance? Always. Everything – absolutely everything feels “off” somehow. And yet, all of that is normal he says, and I have to trust him because I have to believe that there is hope for me. It’s my last hope. It’s my last chance. I want to live and I want a life with people in it. Friends. People who might send me a card, or write an email to me. A phone number in my cell phone that isn’t a family member or doctor. I can imagine it, and I want it desperately, and so I’m not giving up no matter how much worse it gets. I will get off of the Xanax or I will die trying.
So yes, this is absolutely the worst thing that I have ever endured, and the next three years might be this bad, but I have to be okay with that. I’ll be almost 47 years old at that point, and I hope that I’ll have at least 20 years of life left to maybe enjoy some things.
I’m tired of being the forgotten one. Most of all I am so, so sorry for what my anxiety has taken away from my children and my husband, especially my husband who has had to devote every single day of the last 15 years to making sure that I was protected from absolutely anything that might trigger a panic attack. He is exhausted. He is no longer him, and that’s my fault. I really can NOT fail him, but also, I can’t fail myself.