Discontinuing Valium - Cold Turkey

**Note: I am NOT condoning anyone go off Valium this way. From what I have read it can be dangerous, even life threatening, to do this if you are on a high dose of any of the benzodiazepines. (Although for the life of me I never could find out Why...If anyone knows I'd like to know too) Please work out a schedule with your pdoc if you want to stop any of your medications.

I am not exactly sure, but I think I am on my 8th or 9th day of no Valium. I tried to go off it by slowly lowering my dose, but as soon as I had any side effects I would take more Valium and eventually I ended up taking more than prescribed, just so I did not have to deal with the stress of stopping it. I don't know if I feel psychologically afraid, or if physiologically I was becoming more tolerant of higher doses. Probably both. I always seem to have this pattern after having been on Valium, or any other Benzodiazepine, for a while.

Valium definitely helps me in a number of ways, but it also makes me tired and (I think) apathetic. Dr. X and I have decided I slowly go off all my medications as he says it is not clear they are helping me. To some degree I agree. I am not sure if they help or not.

I still seem to have mood swings/unstable moods and much of the time I feel extremely depressed and anxious, sometimes I feel moderately depressed and anxious, sometimes I feel only depressed and sometimes only anxious and some of the time I feel hopeful. This is the best I have ever been in 7 years, so it is hard to say my medicine is NOT working. I think at best it is sort of, at times helping. Other times I think it is my changing life and therapy that has lifted me a bit. If it were the medication wouldn't I feel hopeful at least most or much of the time?

Anyways... I discontinued Valium cold turkey about 8 or 9 days ago. It has been both uplifting and brutal, but I simply could not manage to lower the dose slowly.

The uplifting part is that I seem to have an increase in energy and, at least part days I have had more energy. The brutal part has been and continues to be (maybe even worse now than the first few nights) the withdrawal side effects I have been experiencing:

Not sleeping. The first 4 days I did not sleep more than a couple hours, in increments of a few minutes here and there, each night. By Christmas Eve my mood was great...probably due to sleep deprivation. However, by 1:30 am that night, having gone to bed at 10:15 and finding myself at 1:30 am increasingly wired, twitching and clenching my teeth and more I broke down and decided I needed to take something to help me sleep. I took 50mgs of Trazadone and at least I slept part of the night. The next day I felt so much better, except for feeling like I was dazed. I have continued to take Trazadone as it is at least partially helping me sleep.

Twitching...my muscles are twitching and my hands shaking. The twitching seems to be getting worse and is really annoying. It is almost like the feeling of reflexes when someone taps your knee, except it is all over...in my hands, arms, legs, torso...very annoying.

Mouth movements are back with a vengeance. I began taking the Valium to stop these mouth movements that began shortly after I started taking Prozac. I was getting extremely stressed because I was worried it was tardive dyskenesia. The Valium really helped them slow down and mostly go away (at least I wasn't noticing them as much). Now they are back full force...My mouth is making weird semi-controllable movements. If I focus really hard I can stop them, but the second I stop focusing on stopping them they come back...the movements are things like sucking motions, pursing my lips tightly, my tongue is moving in my mouth to the point that it is sore in numerous places from rubbing up against and pushing on my teeth and my jaw is clenched so tightly (especially in the evenings) that I have been getting massive headaches from the tension in my jaw and neck muscles. I have had to take 600mgs of Advil a couple times a night to lessen my headaches.

Toes tapping/moving It is like they are beating to a different drummer than me. "Tap, Lift, Tap, Lift, Tap, Lift...quickly, then slowly, then quickly, then ploddingly. They do not seem to want to stop (at least when I am noticing them). I can stop them if I focus on stopping, but a few minutes/seconds later I notice I am doing it again.

Anxiety/Bad Energy: Tight chest/back/jaw. Difficulty getting to sleep because I feel like I can't breathe. More energy, but it feels bad, like agitated energy, feel overwhelmed by small things, or things that are even the least bit difficult for me.

Irritability: Noises are annoying. It feels like sensory overload if the music at home is too loud, or it isn't the music I want to hear, or the t.v. is too loud, or people are talking to much. It is almost like the auditory equivalent of bright, relentless sunshine in your eyes when you are not wearing a hat or sunglasses.

Increased eating: (not sure if this is a side effect, the holiday season, or if it is happening at times my mood is down), but I have gained more than 12 pounds in the last 3-4 weeks...and I can't seem to stop eating bad food.

Balance problems: Falling, tipping, slipping. It may be the weather conditions (snow and ice), but I feel completely off balance, even inside.

Memory problems: Not sure I can remember the bizarre things I have been doing, but I remember saying "huh" to myself numerous times a day...Let me think...

spending a lot of time staring at things I pull out to do and wondering why I have them in my hand or on the counter. (Eg: pull out vodka and juice to make a drink and I keep looking at them both unsure of what they are and unsure of what I am to do with them, or find myself in a room and not knowing why, or putting the juice in the microwave instead of the fridge etc...

forgetfulness/carelessness

Stuttering/word finding: I have a phrase or sentence in my head. I go to speak and different words come out. Sometimes it takes me 3-4 tries to get the right statement out. I have done this numerous times while speaking with my husband. The words that come out wrong are usually associated in some way (they rhyme or have something to do with the topic...eg./ topic is strawberries and the word "tomatoes" comes out instead ...both are fruits). The other example of this problem is pure stuttering...where I have to try numerous times for the entire word to come out of my mouth correctly. I can't remember exact examples, (despite meaning to each time it happens), but my husband is making fun of me when I do it, because it is happening regularly.

Depersonalization/dissociation...I am "disappearing" a lot.

Prozac and Bruxism or Tardive Dyskinesia, or both?

I am exhausted right now. It is the "witching hour", that wicked two hours everyday where someone sprinkles a magic potion over me and I fall into a deep sleep, like sleeping beauty. Hey, Where's my prince?

I get so tired everyday at this time that I feel sick, literally. The tiredness isn't "sleepy" tired, it's fatigued, "burnout" tired. So I will lay down and even though I'm not sleepy tired, will fall asleep for a few hours. I am trying hard to be okay with this. To accept that outside these few hours my mood is definitely better; so what if the trade of is a few hours extra of tiredness. At least I do not feel like this all day, like I do when I am depressed.

I am also having "mouth movement problems". At first my pdoc said it was bruxism, then three or four weeks ago he seemed to be really concerned about how my mouth was moving and took me off the Dexedrine as he said it was making the movement worse.

Last week he said they were not as bad as the previous week, but the night before I saw him I took extra Valium and two muscle relaxants because I had such a sore next from my teeth clenching and grinding. I got a bit mad at him, because I felt he was brushing off my concerns about Prozac and tardive dyskinesia. However, he told me he was aware Prozac has been seen to cause TD and he was concerned too.

Anyways, He suggested I see a neurologist to rule TD out. I told him I would like to see if it subsides over time first. In the mean time I want to come off Valium, because I think it is masking the movements. So I began cutting back slowly and already the movements are getting worse and I am not sleeping well. Argh!

I definately have Prozac induced bruxism; and I am increasingly certain I have TD as well. I have videotaped myself while I am involved in an activity (playing guitar, working on the computer) and the weird mouth movements are definitely there. Every once in a while my mouth makes really strange movements. This is freaking me out, I do not want to look strange to other people. What do I do if it is TD? When my current medication mix is the first thing to ever help me?

Prozac and Tardive Dyskinesia

I am intensely worried. Remember I was telling you about my teeth clicking and the relentless snippets of music running through my head? Well my problems in this area are getting worse, not better, despite taking clonidine to try to help the teeth clicking problem.

My teeth "clicking has turned into a "chewing" like motion. This triggered a worry in me that I may be exhibiting symptoms of Tardive Dyskinesia. Yesterday I went to Pubmed and WebMD and searched to see if it was possible to get TD from Prozac. It appears that both patients and Drs have experienced Prozac leading to this side effect.

I began researching more and found I am having numerous symptoms. Obviously, I am not a pdoc, so I cannot say I have or do not have TD symptoms, because, while I can read what they are, I do not have the knowledge to determine I the physical changes I am experiencing are TD...but I feel I am exhibiting enough of what I have read to be really scared.


Here are the psychological and physical changes I have experienced since starting Prozac:

1. My mood has lifted. It's not great, but it is way better than what it was. Sometimes I even feel good. This is a huge shift for me.
2. My mouth is moving in a "chewing" motion, or a "grinding" motion. At times my teeth are tapping to the music in my head. (more about the music later). My jaw feel clenched while this is going on. It is semi-unconscious". Meaning I can stop it for a while if I really focus on stopping it, but as soon as I stop focusing on stopping it the movements begin again. I thought it was happening constantly, but it seems there are times when it stops, starts on its own. I'm not sure if it stops when I'm sleeping. I think so, because when I wake up my immediate thought is..."thank god it's stopped, but then it begins again. If I take Valium at night, it slows down, or stops altogether.
3. My toes are moving up and down, sometimes my feet "squirm" (move up and down, twist upwards) along with the tapping. This is not continuous...not sure what triggers it...maybe anxiety. They are doing it right now. This type of tapping has happened before in my therapy sessions when I get really stressed out. However, it is happening much more often since I began Prozac.
4. My fingers tap...this is similar to the toes, and often happens at the same time as the toes. It appears to be doing it to the music in my head, and is very, very fast...sometimes outside music is playing, but it is not in rhythm with that.
5. This one is weird...I am periodically making a weird, unconscious sound sometimes. It is hard to describe...the best I can describe it is air passing through my voice box, making almost a moaning sound. This is embarrassing as it comes when I'm not expecting a sound. I feel embarrassed that others might hear it.
6. I have obsessive snippets of anywhere from 2-6 bars of music playing over and over rapidly in my head. These are not aural hallucinations. They are thoughts of the music...like when you get a song stuck in your head. Early on it was 4-5 bars of a portion of the same Schumann piano piece playing maniacally through my head...for days. Now I seem to be picking up music from what I am listening to, or advertising jingles, but it is NEVER the whole piece of music, but an annoyingly tiny portion of it over and over and over and over...(you get the picture).
7. I am having increasingly anxious and obsessive thoughts. By "obsessive" I mean I am not bringing them into my head. They are appearing like a constant negative feedback loop, rapidly firing bad thoughts at me. The strange thing is, while they, along with the music and my teeth/mouth problems are making me exceedingly anxious, I am not feeling the sadness, sorrow, or depression that usually accompanies them.

• An example of the above I have been having suicidal thoughts, over and over and over, yet my mood feels okay. The thoughts are about how I could o/d on all my hoarded medications and my dogs heart medications. Usually I cry, or feel sad while having these thoughts. Now I feel anxious because the thoughts won't stop, but nothing in me feels sad about them. In fact, they seem pretty reasonable.
• Another example is my having negative thoughts about myself. Bad thoughts over and over about how I'm crazy, I am becoming increasingly bizarre, I'm a bad person, I will never get well, there is something deeply disturbing about the person I have become, & (suspicious thoughts) my pdoc is not telling me everything, he is keeping something from me, he's not telling me the truth about my diagnosis etc. Again, the thoughts are causing severe anxiety, my heart rate is up to 78-80 while I'm having them (it's usually 60) and they are coming at me at a rapid rate, but I don't feel depressed, or sad, just really angry, irritable and really anxious.

My pdoc has told me he believes the teeth "tapping" is a Prozac induced "tic". The music he says is an OCD symptom (I have many of those anyways). I called him yesterday because when I went to Pubmed and Webmd, and began looking at TD symptoms, to me, the untrained "experiencee", it seemed I had a few of them. I recognize the difference between my untrained understanding of a description of an illness (TD) and the trained understanding/knowledge of a psychiatrist. I really KNOW nothing about TD and how it presents, and I should trust my pdoc does, but I still cannot help being frightened by what I am experiencing.

I phoned my pdoc yesterday to ask if I can stop taking Prozac. When I called I was anxious to the point of feeling distraught. I explained my fears. He said: "I have never expressed or thought of your Prozac side effects as TD". I asked him if he thought my fears were unreasonable, explaining the Prozac makes me feel better, but I am afraid I will have a permanent physical problem(TD). He said no I was not being unreasonable, especially if the symptoms were getting worse and not subsiding at all.

Some part of me wanted him to categorically claim that my symptoms were definately not TD and to keep taking the Prozac until I saw him again next week. I think when I phoned I was looking for reassurance that it was safe to keep taking it, that my fears were unfounded, not support to quit taking it. I really don't WANT to stop taking it as at least, for the first time in years, my mood has lifted. What if I never find something else that helps?