Hello all,
On Feb 1, I will be 9 months free of benzos. All along, I have been sitting quietly on the side lines, reading your stories and sharing your pain. My post is a little lengthy, but I hope that someone may find it helpful. I know the only thing that has kept me going through this whole ordeal is knowing that I am not alone in what I'm going through and that there are so many others in the same boat.
Preface - I had taken Xanax on occasion for around ten years since I was in college. I know that I was never addicted because I quit taking all meds completely for about three months before I got pregnant with my son and then remained off until he was around three months old. I never had any of the experiences I am about to describe before.
My journey through hell began almost one year ago. I was going through a nasty divorce, having financial problems and trying to take care of my two year old son alone. The stress of my situation was overwhelming. I began taking Xanax more than usual and one morning I woke up with a terrible burning pain in my upper left side. I tried to ignore it, as I was just getting over the flu and had been taking numerous other meds, so I thought it was just side effects. I did notice that whatever the pain was coming from, Xanax seemed to ease it. So I took it a little more. The pain kept coming back, so I made an appointment with a gastro doc. He ordered an ultrasound and ran some blood work. He also set me up for an upper GI to rule out stomach ulcers. I did the ultrasound and went in for the upper endoscope. Just as the doctor was about to put me under, he told me that the ultrasound showed an enlarged spleen with lesions.
When I awoke, I asked the doctor what could cause an enlarged spleen and he said possibly lymphoma! As you can imagine, my world was spinning out of control at that point. He told me a CAT scan would show more detail and he would set it up for the next week. The next week was total hell for me. The Xanax usage went through the roof. I was taking .25 mg every 4-6 hours and little did I know my problems were just beginning.
The cat scan came and went and everything was normal. The spot on the ultrasound was just a shadow. Thank God! However, the anxiety I was experiencing while awaiting the results continued.
The doctor suggested that I had IBS (even though I had no symptoms of IBS just pain in my side) and prescribed Librax (a mix of librium chlordiazepoxide (benzo!) and clidinium a muscle relaxer.) He said to take it at night and more often if I so chose. I took it and little by little, I began to experience some very strange symptoms. The anxiety became worse. I felt nauseas at times. I started waking up in the middle of the night in extreme panic and burning pains in my chest around my sternum. This was so bad that I went to the ER one night because I thought I was having a heart attack. Of course, they tell me it's anxiety, give me a couple of Ativan and send me home. This was a weekend so I went back to my doctor first thing on Monday. He confirms that I am having anxiety attacks and tells me to ditch the Xanax and try Klonopin and Elavil instead. He said the Klonopin was just like Xanax, but better!
I was a wreck, so I took his advice and started the meds. The Elavil did a real number on me. By the third day, I felt like I was on the worst acid trip one could ever imagine. I could not function. I was hallucinating, passing out, crying uncontrollably, restless legs, I felt like bugs were crawling on me and the list goes on. A total basket case. So I go back to the doctor. He suggests I stop the Elavil and increase Klonopin. to .mg three times per day.
I then decided that I had enough of the meds, so I stopped them all. A day or so later, I woke up in the middle of the night with electric shocks shooting all through my body, I had intense pain in my wrists and tinnitus that was nearly unbearable. I also began experiencing tingling sensations in my hands and feet.
At this point, I had no idea the benzos were causing these symptoms. I was convinced I had MS, so I made an appointment with a neurologist. He checked me out and ordered an MRI of the brain and ruled out MS and several other conditions. He then clued me in that I could be withdrawing from the Librax, Xanax and Klonopin.
He told me to resume the Klonopin and to increase to 2 mg per day, so that's what I did. For the next three days, I felt great, completely back to normal. But then the strange feelings started coming back. Little did I know I had reached tolerance. My symptoms at that point were a strange numb feeling on the back side of my upper arm, overly sensitive fingertips, when I would step in to a tub of warm water, the water felt ice cold on my feet, fascilations around my spine, and feeling of weakness or tightness in my left leg.
I knew it was the meds because every time I would take my dose, the symptoms would fade. The problem was the length of time feeling normal between doses was getting shorter and shorter. My tolerance level was getting higher and higher with every pill I took. This really got my attention and I went back to the neurologist and he told me I should not stop take Klonopin. "It's a great drug," he told me. And he felt that I should wait until things settled down in my life to worry about stopping the drugs.
I completely disagreed and told him I was going to quit. I asked him about tapering because I had heard that stopping these meds could cause seizures. He laughed and told me that was garbage. He said Klonopin leaves the system slowly and over a length of time, so I would be fine simply stopping the drugs.
I sort of believed him, but I also knew how I had been feeling so I decided I should at least taper over a week or so and then stop. And that's what I did. The first four days off weren't that bad. I was still anxious and wound up, but it was tolerable. DAY FIVE: I woke up and I felt like I had taken a one-way ticket to hell. My entire left thigh was numb, my muscles were tight and I felt like I was in a dreamlike state. I felt like I couldn't speak coherently and when I did speak , it was like I didn't recognize my own voice. I tried to work that day, but I had to go home because as the day went on, my symptoms increased exponentially.
I didn't sleep for the next six days. However, I refused to take another pill. I went on like this for the next three weeks, thinking and hoping and praying that each day would be the last day of this living hell. I had no idea about a proper taper or what a benzo withdrawal was really like. By the time I found the information on the web, I was 3-4 weeks off and reinstatement is a roll of the dice at that point. I was terrified that if I did reinstate, it wouldn't work and I would be starting all over and taking a chance on feeling even worse. So I kept going, minute by minute and day by day.
I'll go ahead and provide a list o f he symptoms I've experienced and how I've progressed over the months. Note- 90% of my symptoms have affected the left side of my body only! I read some place you have more benzo receptors on the right side of the brain, therefore symptoms appear more so on the left side of the body. It seems as though most people here have right-sided problems, so I don't know how true this is.
Abdominal pain (which started this whole thing and I now know was a sign of tolerance!)
Aching jaw (very painful in the beginning and flares from time to time)
Aching joints and muscles (one of my main symptoms that and one of the few that still remains)
Anxiety I've been to the ER at least 6 times during this ordeal because I just knew something was terribly wrong with me.
Appetite loss severe in the first few weeks.. I lost at least 20 lbs.
Arm weakness horrible in the first month and this has been bothering me again in the past few weeks due to trigger point therapy
Backpain This is the one thing that still bothers me. I seem to have bad muscles spasms in the quadratus lumbordum, psoas, and buttock muscles and it seems to put a strain on my pelvis and SI joint.
Eye twitches first two week
Bladder problems OMG! This was by far the most annoying and physically painful symptoms. This started on day 5 after quitting K and stayed with me for four months! My bladder literally hurt and I had a feeling of a strange, painful awareness of my urethra. Ouch! I probably had 20 urinalysis during this time. All normal. This one was strange. It was constant for at least the first month and then it would hurt for an hour and then be fine for an hour, then hurt one day and not the next. It went on like this until the end of August and it hasn't bothered me since. Knock on wood.
Blurred vision, floaters, seeing spots- mostly during tolerance and first few weeks off, although I do seem to have more floaters than I used to.
Burning spine -acute
Burning sensation around mouth acute withdrawal
Burning toe nails This would wake me up in the middle of the night. I thought I had gout. Happened 4-5 times early on and it happened about two weeks ago, but much milder than before.
Chest tightness this one hit me at seven months out and lasted about three weeks
Crying jags off and on the first three months
Dental pain acute withdrawal
Depression (minor) I've been very fortunate. I haven't really had what I would call major depression or cognitive problems. My symptoms have been much more physical.
Dry mouth acute withdrawal
Dry skin still with me
Electric shocks feeling acute withdrawal
Fear Fear of being alone, losing control, never recovering, having some undiagnosed disease this one was worse in the beginning, but these feelings creep back in on me often.
Flu-like symptoms first two weeks off
Formications in my scalp and about 7 months off , I felt them occasionally in my calf and upper leg
Hair loss Telefuvium hair loss. Started almost 90 days exactly after I stopped the K. It's caused by a shock to the system. The hair loss lasted about two months, but it's coming back thicker than ever now! : )
Headaches horrible occipital headache that lasted about one week when I was two months off. Occasional pressure type headaches early one.
Heart palpitations- on and off for about the first six months
Inner tremor This started at four months off. It felt like a vibrating feeling in my left groin area and left inner ankle. Lasted for about a month off and on.
Jumping finger first month off like my left pointer finger just had a mind of it's own.
Insomnia This was really bad the first few weeks, but I am sleeping great now!
Loss of interest in my home, job, finances. I'm just starting to work on this.
Mild hypertension I think this is brought on by the anxiety. Only happened when I was really panicking.
Muscle spasms This is the main symptom that still plagues me. I don't know what to do about it. Stretching makes it worse.
Nausea during tolerance
Neuralgia facial pain first two months off and on
Nightmares Absolutely horrible for first two months.
Parasomnias This is when your body gets stuck between asleep and awake. You are paralyzed, but wide awake and dreaming. Scary. This was a real problem the first few months out.
Pains in the temple acute
Pains in the chest and ribs the rib pain still bothers me from time to time
Paraesthesia - Tolerance, first two months off mainly in my left leg. This still happens some time when I get upset or really stressed. The last time it happened was Halloween. We got some bad news about a family member, so I went to bed really upset. I woke up in the middle of the night to use the restroom and when I stood up, my entire left side from the top of my head down to my toes was tingling. Thankfully, this subsided the next day.
Paranoia first two weeks - I felt like everyone was plotting against me
Pelvic pain I think this is from muscle spasms in the pelvis and lower back. Still bothers me, but it's not near as bad as it was.
Perspiring Terribly first couple of weeks and then I noticed my feet would sweat almost every evening for about a month
Restless legs tolerance and lasted through about two months off
Sensitive finger tips - tolerance
Sharp throbbing pain in the wrists acute withdrawal and this one came back briefly for a few days during Christmas
Tinnitus Acute and then again at around six weeks off. Lasted for a couple of months. This does return when I get upset, but it fades when I calm down.
What flares my symptoms:
Alcohol
NSAIDS I refused to accept this in the beginning, but it's true. Advil makes me feel worse.
Narcotic pain relievers I was the queen of poly drugging in the beginning and it did absolutely nothing for my symptoms. Actually, I think they may have helped me temporarily, but when they wore off, I always felt worse
PPIs Proton pump inhibitors for heartburn such as Nexium, prilosec, etc. Horrible drugs!
Trigger point therapy I recently went to the chiropractor to see if he could help with the joint an muscle pain. He did a trigger point release to the muscles using electric stim. It's similar to the TENS unit but they use a wand and move it all over the back. I felt great the first time, but I quickly realized it was setting me back. I had tingling in my hands, weak left arm and severe muscle tension in the upper back and neck and general pain in most of my muscle groups. I was beginning to think I had fibromyalgia. That was two weeks ago and I'm slowly recovering. I read that this type of therapy stimulates gaba to relieve the tension and pain in muscles. Just what I needed!
Stress
Stretching and exercising
The hardest part for me has been accepting what has happened and that what I am going through is a result of the drugs. I have had such a hard time understanding this. I have been so sure that I have a disease and not a drug withdrawal. I've been certain that I've had MS, fibromyalgia, ALS, candida, a brain tumor and plenty of other horrible diseases. I was already a hypochondriac, so this has really sent me over the edge. During this ordeal, I've spent countless dollars on MRIs, CAT scans, bloodwork, EMGs, steroid injections, xrays, etc. They have all been normal.
Wow. Typing that all out really reminded me of exactly how far I have come. I am definitely not healed yet, but I am feeling better and better each week.
Thank you all so much for sharing your stories and support. If this had happened to me before the internet existed, I truly don't know how I would have survived. I wish all of you a speedy recovery.
Bless you all.
Alli
9 months of rapid taper K, Xanax and Librax