County Mental Health Center Woes
November 16, 2014 11:23 AM   Subscribe

I suffer from severe anxiety and PTSD, and I have been on benzos for 10 years now (first Xanax and then clonazepam). My insurance limits me to going to the county mental health center, and my psychiatrist there sent down a mandate that I have to stop the clonazepam. I'm frustrated, especially since I was not offered anything different for anxiety. I am mostly upset about poor communication and it’s not so much that I am questioning her judgment from a medical perspective. I am not seeking advice about managing anxiety; I want advice about self-advocacy.

There was a fire in my apartment a few weeks ago, and I went to the ER for smoke inhalation. While there, my bloodwork still showed alcohol from the previous night. I don’t know what my BAC was. Alcohol was not a factor in the fire.

My psychiatrist tends to be more conservative when it comes to benzos, especially when patients drink at all. The ER called the mental health center, which is the only place I can go to see a psychiatrist at all. I don’t have private insurance, only state medical assistance and SSDI. There are 2 psychiatrists in town who accept state healthcare, and both of them are really bad. So I see a psychiatrist at the mental health center instead, even though that means having to make an appointment three months in advance. I also get my meds from their pharmacy, so the ER contacted them to get me replacement meds for the ones left behind in the fire.

I am not sure exactly what the ER folks told my psychiatrist’s office. A week or so after the fire, I stopped by the mental health center to let a nurse know about some of the trauma symptoms I was experiencing. That’s when the nurse told me that my psychiatrist had stopped the clonazepam because of the alcohol in my system. (The nurse said my case manager had been trying to reach me, but I hadn’t received or missed any phone calls from them.) The nurse gave me instructions on how I was to taper off.

I was pretty upset about this, and I was very frustrated as well by the manner in which I found out about it. I am appreciative that the mental health center is way underfunded and beyond strapped, but it still upset me that there was no way to actually have a conversation with my doctor about this. I was even more upset when I went to pick up the smaller supply the next week so I could properly taper and I discovered that the nurse hadn’t given me the right instructions and now I wouldn’t get to taper at all.

Between the benzo withdrawal and the trauma of the fire and all its complications, my anxiety was reaching impressive new heights. I had no circadian rhythm. My blood sugar was always crashing suddenly. I had nightmares every time I slept. My thoughts raced and I trembled constantly. I kept calling the crisis people at the mental health center for any kind of intervention at all, but I didn’t get a call back until days later, and they just asked me a couple questions but didn’t do anything.

Last weekend I reached my breaking point because there was just no way I could get relief and the nightmares meant I never felt rested. I went to urgent care at my primary care clinic and told all of this to the doctor I saw there. She said that she didn’t want to do anything against my psychiatrist’s advice but that she thought I needed relief, especially since benzo withdrawal was likely a huge contributing factor in my symptoms. She proposed that she give me five days’ worth of a low dose of clonazepam and that her office would call my psychiatrist and try to work out a mutually agreeable plan.

I didn’t hear anything from either doctor’s office and I finished the five-day supply a few days ago. I called the primary care clinic to see if they had been able to work anything out, and they told me that they had been leaving 3-4 messages a day for my psychiatrist all week. I called the mental health center myself and left another message, this one asking them to talk to the other doctor.

A nurse from the mental health center called me back later and said that my psychiatrist was unwilling to prescribe any more clonazepam. I said that that was fine and I knew that but that the primary care clinic had wanted to discuss options with her. I don’t know if she misunderstood or what, but the gist is that that conversation would not take place. She told me to go exercise when my anxiety spiked.

Now as I’m preparing for the withdrawal to start all over again, I don’t know what to do. Aside from Zoloft, I am not on anything else for anxiety. I’ve tried many other things in the past without luck, and I’m concerned about what’s to come for a lot of reasons. I am also very angry and disappointed that they’ve been so difficult to work with, especially since I can’t just go elsewhere with a more accessible psychiatrist or better communication system. My therapist doesn’t have any ideas, and she’s expressed similar dissatisfaction with the mental health center before.

I don’t know if going back on the clonazepam is the best option or not, but I know I would like to be heard in my own healthcare. Can you think of ways that I could either get a better experience at the mental health center or get care elsewhere?
posted by mermaidcafe to Health & Fitness (11 answers total) 1 user marked this as a favorite
Call your therapist. Ask if she can refer you to a psychiatrist who uses a sliding scale for payment.

This is appalling. If I were in your area I would break the law and give you some of my own medication. I am so sorry you're going through this.
posted by sockermom at 11:34 AM on November 16, 2014 [6 favorites]

In terms of self soothing you might find the Anxiety and Phobia workbook helpful. Also I find lemon balm tea or chamomile tea can be great relaxers. Figuring out a self care ritual might help like a hot bath followed by a cup of tea. Make yourself eat and go to bed at a regular time even if you're not sleeping. Just lie in the dark for awhile every night.

In terms of advocacy two things may help: bring someone to appointments with you, and be a squeaky wheel. Don't take "no" or "just exercise" for an answer. Push - politely - and call again and be firm about what you need. Assert yourself. Say "I will wait for as long as it takes" if they try to give you the brush off. Hound them. Call as much as you need to to get this taken care of.

Good luck.
posted by sockermom at 11:40 AM on November 16, 2014 [2 favorites]

I think you're going to have much better luck talking to your psychiatrist if you actually set up an appointment to talk to your psychiatrist. That would be my first step -- keep calling and seeing if you can get in, for an appointment, to discuss your symptoms. Not a phone call, an appointment. Call every morning and see if there are any cancellations, if you have to.

Once you're in front of your psychiatrist, don't focus on benzos, just focus on your symptoms and state your willingness to use non-benzo options for treating them.
posted by jaguar at 11:41 AM on November 16, 2014 [16 favorites]

I think Jaguar advice is spot on--focus on the symptom and your willingness to explore non-benzo alternatives. A fire+alcohol+benzos (related or unrelated) is a red flag for a prescribing physician as is any use of alcohol with benzodiazepines. If your physician is wiling to look at some off label uses ( these are used frequently) you might consider Neurontin(gabapentin), Topomax(topiramate) or a reduced dose of one of the antipsychotics such as quetiapine (seroquel). All of these are not with out their own side effects but can be quite effective for some people for quieting the storm/anxiety/agitation. I have been out of the field for several years and it goes without saying (but we say it anyway) IANAD and IAMNYD.
posted by rmhsinc at 1:02 PM on November 16, 2014 [3 favorites]

A fire+alcohol+benzos (related or unrelated) is a red flag for a prescribing physician as is any use of alcohol with benzodiazepines.

Yeah, it might be helpful to realize that your treatment team is most likely mostly concerned with making sure you don't die, accidentally or on purpose. Alcohol plus benzos can depress your central nervous system enough that you stop breathing; adding smoke inhalation or other respiratory problems on top of that certainly isn't going help. The agency may not be communicating very well with you, but I've been on treatment teams in similar situations and our concern has always been to prioritize the client staying alive, and then worry about the psychiatric symptoms. They may be coming across as indifferent to your anxiety, but it's very possible they're just not seeing it as your number-one treatment priority right now.

Which, again, does not excuse them not returning your calls. So I'd work to stop the literal game of telephone you've got going, and put yourself physically in front of the only person in the situation who can prescribe new medications.
posted by jaguar at 1:17 PM on November 16, 2014 [4 favorites]

While there, my bloodwork still showed alcohol from the previous night

You say you don't know what your BAC was, but how much did you drink? When you say from the previous night, I'm also not clear on whether we're talking a few hours or like 12+ hours. Also, I think it makes a big difference if you were actually taking the benzos at the same time that you were drinking. I mean, I'm assuming after 10 years you've probably developed some tolerance, but I really think alcohol plus benzos even in small quantities is never a good idea. (Been there, done that, doesn't end well).

I bring this up because, like a few others have already said, it will probably help to understand where the doctors are coming from. I also glanced through your question history, and I wonder if there are some concerns because of the prescription overdose earlier this year. Whether it's warranted or not, those kinds of things can sometimes get you pegged as being a risk when it comes to addictive medications, although I have no idea if that's relevant in this case.

With that being said, your psychiatrist really messed up in several big ways. Not ensuring that you have an appropriate taper is both irresponsible and potentially dangerous, and I really don't think he should have cut you off at all without starting to look for alternate treatments. The lack of communication is just the icing on the cake.

Unless you can actually get in to see the psychiatrist very soon, I would start looking elsewhere. You say the other 2 psychiatrists are really bad, but do you know for a fact that they're worse than this person? The idea to look for a sliding scale psychiatrist is also a good one.

Since your primary care doc seems reasonable and available, I would try to set up another appointment with them, and let them know that you've decided to seek another psychiatrist because of the lack of communication, etc. Maybe you can work out something where you consult with an out of pockets/sliding scale psychiatrist to get started on a workable treatment plan, and you could see if your primary care doctor would be willing to do follow up prescribing.
posted by litera scripta manet at 2:42 PM on November 16, 2014 [1 favorite]

I'm so sorry you are suffering.

I don't fully understand the set up: do you have a primary care physician? If so, I'd try and make a same day emergency appointment and ask for enough clonazepam to do a proper taper. I'm a bit confused about why you weren't tapering off the clonazepam when you first received the smaller supply after the original ER visit. In any event, you need to taper off this medication, not stop it cold turkey, and your primary care physician should be willing to talk with you about this. Do not accept a low dose to tide you over; you need a proper plan for gradually weaning you off. So that is step one: if your psychiatrist will not take your calls, go see your primary care physician tomorrow. If you need to, go in the morning with something to do, and camp out in the office until someone sees you.

Step two is finding some other way of dealing with the anxiety. You may need to see another psychiatrist, but there are other treatment options. Some of these may be medical (a different antidepressant), and others may involve some sort of CB therapy. Go with an open mind, but also make it clear that simply "bucking up" and "powering through it" is not an adequate treatment plan.

Good luck, and take care.
posted by girl flaneur at 2:47 PM on November 16, 2014

Thank you all so far for your responses. To answer some of the questions you asked:

While I don't know my BAC, as I said, my earlier drinking was totally foolish since I'd ended up just drinking straight liquor that my friend brought over. And that's never a good idea, of course. I think I got to the ER maybe 3 or 4 hours after I stopped drinking? I'm not sure, but maybe that helps.

I do have a good relationship with my primary care doctor, but none of them are willing to go against what my psychiatrist said, even if it means helping me do a proper taper. And I have tried to explain to the mental health nurses why I didn't get to taper, but they don't seem to listen at all.

Regarding the 2 other psychiatrists in town that I could see with state medical assistance, I have seen one of them. He wanted to switch me to Wellbutrin, and I gave him specifics of how agitated and disoriented I had been on it when I tried it the previous year. He just kept saying that it might be different this time and prescribed it for me anyway. I didn't take it and didn't go back to see him. I have not seen the other one, but my therapist told me to avoid him.

I don't think there are any sliding-scale psychiatrists here, but I will ask my therapist directly when I see her tomorrow.
posted by mermaidcafe at 3:14 PM on November 16, 2014

Now as I’m preparing for the withdrawal to start all over again, I don’t know what to do. Aside from Zoloft, I am not on anything else for anxiety.

Diphenhydramine (Benadryl) might help take the edge off. It's available over the counter and has anti-anxiety effects in addition to being an allergy medicine and a sleep aid. I don't recommend taking more than 100mg at once or (speaking from experience) you'll likely get really unpleasantly dehydrated.

The withdrawal effects and rebound anxiety do eventually go away, so just hang in there. Another thing that really helped me when I went off clonazepam was marathoning TV shows, as that distracted me from how I was feeling -- do you have a Netflix account? A really engrossing video game that takes hundreds of hours to beat (like Skyrim) or can be played over and over (like Civilization) or has ongoing stuff to do even at max level (like World of Warcraft) is another great distraction.

(I agree with all above that you deserve better medical care than this. But in case it takes a while to sort out, I wanted to suggest some things that helped me.)
posted by Jacqueline at 3:52 PM on November 16, 2014 [1 favorite]

Well, I do not want to add to your anxiety (and I don't know how much clonazepam you were taking), but benzo withdrawal can be life threatening for those who were taking benzos for many years at high dosages.

So, if your dosage was high, I think you need to go to someone (your primary care physician, one of the other psychiatrists, the ER, a sliding-fee psychiatrist, it really doesn't matter who you pick), and demand enough clonazepam for a taper. Tell them that you are willing to explore alternatives for the treatment of your anxiety, but you want to step down from this medication responsibly. And you need to do this tomorrow. But then you really do need to taper and not simply stay at the same, or lower, dosage, or you will have this problem all over again.
posted by girl flaneur at 4:00 PM on November 16, 2014 [2 favorites]

Upon reading your follow up:

I'm sorry, because this really sucks. If your therapist doesn't know of any sliding scale psychiatrists, I would go to google and look up every psychiatrist within reasonable distance of where you live now and call them all directly to see if they're willing to work on a sliding scale. (And on the Wellbutrin front, ugh, I don't even have major anxiety problems and that had me jumping out of my skin so I'm sorry that psychiatrist tried to get you to go back on it.)

Beyond that, if you're stuck with this person, I agree with sockermom that your only option is to be the squeakiest wheel you can be. Maybe see if your therapist is willing to reach out the psychiatrist as well.

Oh, and IANAD, and I'm aware that benzo withdrawal (like alcohol withdrawal) can be deadly, but it sounds like you were able to do some kind of taper, and your primary care doc seems on top of everything, so I wouldn't feel like you have to go rush out to the ER or anything. I'm assuming your primary care doc is aware that you're going off of them completely after the 5 day dose she gave you.

Lastly, I know this falls a little bit outside of the scope of your question, and I'm sure there's a good chance that you've tried all of these already, but just in case, I thought I'd throw it out there: Have you tried any beta blockers like propranolol or alpha adrenergic agonists like clonidine? Since they're nonaddictive, I bet a psychiatrist would be much more willing to prescribe them, and maybe even your primary care doc would be willing to experiment with them. You also mention nightmares, so prazosin might be worth a look as well.

This sounds miserable and incredibly frustrating, so I really hope you're able to find a workable solution as soon as possible. Hang in there and good luck!
posted by litera scripta manet at 3:20 PM on November 17, 2014

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