I am a 57-year-old white American male infected with Hepatitis C. I am involved in a controlled medical research study by Roche Pharmaceuticals of an experimental Polymerase Inhibitor (RO5024048 also known as RG7128) drug therapy for the virus. This document is the story of my illness and the experience of treatment. My lovely and pretty damn wonderful wife will be contributing her take on the experience as well.

Showing posts with label serotonin syndrome. Show all posts
Showing posts with label serotonin syndrome. Show all posts

Tuesday, November 9, 2010

Managing Serotonin Update

It’s been just over 4 weeks since I cut down on the drugs that affect the serotonin levels in the brain. I was taking trazadone for sleep, tramadol for pain and daily doses of Celexa for depression. I cut out the tramadol and the trazadone and, after consultation with my hepatologist Dr. Bzowej, replaced them with Ambien and Vicodin. The results have been significant.

I have noticed that I am physically calmer. My hands are steadier and the random muscle twitching I have been experiencing has receded a bit. I still have all the hyperactivity behaviors I’ve had all my life (leg bouncing, pacing, etc.) but I am not as physically tense and tight as I was 4 weeks ago. My teeth-clenching and grinding have both subsided and the tendency to get caught in negative mental feedback loops (or to put it another way, become obsessed with other people’s irritating behavior) has also declined. Not to be continually catching myself thinking about other people and their foibles really reduces the stress load.

Among the downside to the change is that I am now using Vicodin for pain. Tramadol was relatively mild in its mental effects compared to vicodin. The days I have to take two doses to relieve the aching and allow sleep leave me loopy while I’m taking it and groggy the next morning. Given that serotonin overload can result in seizures and occasionally death, I’ll deal with vicodin’s side effects, it’s just that losing even more mental acuity while I’m taking it means I have even less to work with.

Ambien works differently as well. It is not as strong as trazadone. That means that I don’t wake up groggy, but I also wake up much more during the night. Trazadone would generally allow me to get at least one stretch of 3-4 hours of sleep during the night. The ambien puts me to sleep more gently but also not as deeply and I generally sleep for no more than 2 hours at a time. I wake up feeling rested so it is apparently having the desired effect, it just accomplishes it differently.

The change in medications has done me good. This reinforces the fact that you have to pay close attention to your own physical state and close attention as well to your drugs, their doses and their interactions. Don’t be afraid to talk to your doctor about any symptoms you think may be related to any of your drugs. They can’t help you if you don’t talk to them. Make sure that you get your questions and concerns are answered in any meetings you have with your doctors and nurses.

Now that my mental state is calmer and steadier and my energy is returning after the emotional roller coaster of the San Francisco Giants World Championship drive, I hope to have more frequent postings. Thanks to all of you who have commented and offered support. I hope the rally thong ends up in Cooperstown…

Thursday, October 14, 2010

Managing The Serotonin Complex

My previous post discussed the problems I have been having because I am taking Celexa, Trazadone and Tramadol to manage side effects of my chemotherapy. I had a scheduled appointment with my hepatologist this past Friday and decided to bring these issues up at the meeting.

That plan was derailed from the start. When I got to the doctor’s office, my appointment had been cancelled. It was irritating as hell, but they did immediately contact my nurse practitioner Alex who called in the overall Hep C treatment nurse Tammy for a three-way consult. I explained my symptoms and my worries about serotonin overload. Tammy agreed with me that my symptoms could be some level of serotonin syndrome and she and Alex both said I should stop the Tramadol. I told them that the only effective means I had of dealing with the muscle pain I get each injection cycle was to take 800 mg of Ibuprofen every 4 hours. I said it worked fine, but that I had been told it was bad for my kidneys. They agreed but said that in the hepatology department they do not prescribe any opiate-based painkillers. I would have to talk to my primary care doctor in order to get anything prescribed. This sets me up for a great meeting with Dr. K to engage in some classic drug-seeking behavior. I need that stress like I need another hemorrhoid.

I also told them I wanted to change from Trazadone to something else for sleep. They were both resistant to that suggestion. Apparently Trazadone is prescribed along with Celexa and other antidepressants fairly commonly and without problems. I explained that my nervous system is sensitive to drugs and perhaps we should cut back to only one serotonin reuptake inhibitor. They told me that we should eliminate one at a time. Not a bad idea, but then they don’t feel as jumpy as I do.

That was five days ago and it has been a nasty five days indeed. I decided to stop the trazadone as well as the tramadol to try to get my serotonin levels done more quickly. The first 3 days were especially rough at night. My legs were so twitchy that I had to keep getting out of bed to walk around and tire them out. When I got back to be, I had a ten minute window to fall asleep before the twitching would start again and I would have to start pacing, It was a great deal like the symptoms described in this post, but they lasted longer and were more intense. I managed to get about four hours of sleep a night.

The past few days have been better. I have less general jumpiness, irritability and nervousness during the day. The nights are still difficult, but I have been able to get five to six hours of sleep. I am going to try some over-the-counter sleep stuff of some kind if this goes on much longer.

I think I made the right choice to get off the tramadol and the trazadone, but I certainly wish I had a better idea of how long it’s going to take for my body to settle down a bit. I have dealt with restless leg syndrome all my life, but if this goes on much longer I’ll need stronger drugs than celexa to keep me sane…

Saturday, October 9, 2010

Minding Your Drug Interactions

Among the disadvantages of being in a drug research study is the tendency for discontinuity in your medical care. The RO5024048 Roche study that I participated in was run by Dr. Natalie Bzowej. It was administered by the Hepatology Center at California Pacific Medical Centers (CPMC). CPMC is a first rate institution and they do cutting edge Hepatitis C research. The doctors are excellent, but as is true with specialists everywhere, they are busy people with many patients. When I screened for the study, I was examined by Dr. Frederick. For early symptoms of rash, sweats etc, I was examined by Dr. Merriman. When I had difficulty with pain issues I was examined by Dr. Bonacini and prescribed Tramadol. Later, when I was having trouble with sleep, I was examined by Dr. Frederick and prescribed Trazadone. When depression issues cropped up, I was examined by Dr. Bzowej and prescribed Paxil. and added Ativan for use as needed. After I reported difficulties with the Paxil, I was seen by Dr. Frederick again and he changed the antidepressant to Celexa Finally, my thyroid function was affected by the research meds and I was put on Levothyroxine by my primary care doctor.

Over time, this can add up to a significant number of medications creating their own set of interactions with each other that have to be carefully attended to. This is something that you should not be leaving solely to the doctors treating you. All the doctors in the hepatology center work on the same team. They are all involved in doing research and, to the limits imposed by patient and study confidentiality restrictions, they communicate with each other and share patient information. However, each doctor has preferred medications they are familiar with and prescribe regularly. This creates a situation in which each doctor is thoroughly familiar with certain meds and they may not be conversant in the effects and interactions of meds preferred and prescribed by the other doctors. You have to do your own research on the drugs you are taking and the potential interactions between them all. I found the drug interaction database at drugs.com to be particularly helpful. If you find something, contact your doctor and get their response. If you feel you need to change drugs, tell them. Keep at it until you get answers that satisfy you.

In my case, I was prescribed tramadol, trazadone and celexa. All have the effect of inhibiting serotonin reuptake in the brain. While this is a good thing for combating depression, if it results in an overabundance of serotonin in the brain, it can cause serious problems: irritability, confusion, tremor, stronger reflex reactions, sweats and potentially even seizures. I do not think these would have been prescribed together if all my symptoms had manifested at the same time. But as each was prescribed for a symptom that was occurring at separate times in the study, I ended up taking them all. There are days when I have to take all three and it is on those days that I have been noticing an increase in my some of my symptoms.

I have increased irritability, a general increase in physical tension and in activities like rubbing my hands, pacing, grinding my teeth, etc. This is all symptomatic of serotonin syndrome which I thought I experienced a few months ago. I am seeing both my primary care doctor and my hepatologist this week and will bring this all up with them both. I would like to see another painkiller substituted for the tramadol and perhaps another sleep aid substituted for the trazadone. I am not sure which way the doctors will want to go but I am tired of feeling this way and need a change.

Tuesday, August 3, 2010

Walkin’ After Midnight

What with the general insomnia that the interferon and ribavirin treatment can bring about, combined with the pure nervous overload of my recent bout of serotonin syndrome, I have found myself pacing around my house in the middle of the night with some frequency in recent days. If I start at the back of the house and walk though the “breakfast room,” the kitchen, the dining room – such as it is, the living room and return on the same track, I walk about 90 feet. If I do ten laps it is 900 feet, twenty makes 1800 and 25 laps is just under a half a mile. It takes about 15 minutes to do 25 laps as I can’t really build up a lot of speed in the dark because the bruising on the shins becomes quite painful if one is not careful to watch where one is going. This pacing generally quiets down the leg jitters and twitches and tires me out enough that I fall asleep after going back to bed.

Unfortunately, I occasionally wake up and can’t fall back asleep necessitating another set of laps until I am tired enough to sleep through the night. Aside from toning up the calves nicely, these late-night peregrinations also allow one to review all the plans one once had for the house. That floor you were going to refinish; the cracks in the plaster that need patching, the new chandelier you were going to install in the dining room about ten years ago. There is nothing like the middle of the night to come face to face with all the grand, and unfulfilled, plans one had for your castle. It’s a good thing the lights are out or the number of flaws and not quite finished details would be overwhelming.

But then I climb the, squeaky, set of stairs to the second floor, climb into bed next to my (gently, gently) snoring sweetie, put my arm around her and think that the new paint on the stairway can wait awhile, it’s perfectly comfortable as it is.

Sunday, August 1, 2010

Serotonin Syndrome

I had a bout of serotonin syndrome during the past several days and it was quite an experience. It began last Wednesday the 27th as I started to feel a bit jittery while at work and had a few episodes of chills that evening when I was going to bed. I continued to feel jittery, nervous and had some muscle twitches on Thursday. I went to the Giants game that afternoon (it was a 4:05pm start) and got quite chilled by the end of the game. Even after arriving home I noticed that I continued to be cold and had a lot of jitters and muscle twitches.

This reminded me a great deal of the physical situation I encountered when I started on Paxil and, to a lesser extend, after I switched to Celexa. It seem unusual that this should be happening several weeks after beginning antidepressants, so I began examining my recent use of meds to determine what might be happening. I believe it was related to the pain medication tramadol.

The past few weeks I have had a bout of fairly serious lower back pain. I have been dealing with this sort of pain for about 20 years as the result of a serious bicycle accident (over the handlebars, on the pavement, laid up for a month sort of thing). It is something I have managed by stretching, core exercises and, occasionally muscle relaxants. It flared up about 10 days ago with pain across the lower back, around the sides of the pelvis and even with some sciatic pain radiating down my right leg. It made it impossible to sleep and even tough to work while sitting up. I immediately started in with my stretching routine and exercises but until they began to take effect I was taking tramadol at least twice a day and on a few occasions 3 times a day.

I remember when I got my prescription for Celexa; the pharmacist took me aside and told me that he noticed I was also taking tramadol. He stated that while tramadol is not a serotin uptake inhibitor specifically, it has a similar chemical construction to Celexa and I should be careful not to take too much of it while taking the Celexa as it could lead to an oversupply of serotonin in the brain which causes serotonin syndrome.

Symptoms may include:
· Restlessness
· Hallucinations
· Loss of coordination
· Fast heartbeat
· Rapid changes in blood pressure
· Increased body temperature
· Overactive reflexes
· Nausea
· Vomiting
· Diarrhea

As soon as I remembered this conversation, I immediately stopped taking tramadol and instead used ibuprofen for any pain. I still took my dose of Celexa but I noticed that it did not get any worse on Friday and by Saturday it had begun to moderate somewhat. After a jumpy night Saturday, Sunday has been okay with a gradual reduction in nerves, chills, sweats, etc. I think it is well on the way to returning to normal over the next few days.

I am definitely going to paying closer attention to my use of tramadol and will be talking to my hepatologist about potentially switching to another pain med for the times I need it. At least I recognized the symptoms as being similar to the range that occurred at the start of the antidepressants and could make the connection with the serotonin.

On the positive side, though I would not recommend it to anyone, I lost four pounds in four days due to the amplified nervous activity from the serotonin. But do not try this at home. It is much better to be fat and happy than slightly less fat and jittery as hell.