4.5 months off Ativan -- remaining symptom list -- hope it helps someone

Today is 4.5 months off of Ativan, that I took as prescribed for two years. After experiencing tolerance withdrawal, I was detoxed too quickly by a medical team (psych, neurologist, addiction PA, and psychologist) which led to the last 4.5 months being what I would describe as a living hell.

At this point, the only way around is through, so I keep going…benzo free. I have not celebrated yet; however, I am noting milestones. As I heal and post these milestones, I want to include specifics so that others may gain reassurance and comfort to get through another day of healing from post-acute withdrawal syndrome (PAWS) or what, in some cases, is a benzo-induced neurological injury.

My last update was two weeks ago. I was not doing as well as I am now. So this is progress. No two people are alike, and we really cannot compare our healing to another's because recovery depends on so many factors (genetics, age, medical history, etc.) The good news is that you will heal. The bad news is that the time for that healing is not within one’s control. 

As those of us know who have experienced it, PAWS is not predictable. There is no scientific data about how to treat it. No doctor or expert knows for sure. Everything a patient does to treat symptoms could be considered experimental. I have realized that there is no rhyme or reason for how symptoms come and go. Doctors cannot give us insights or help at all other than to take our money, give us misguided timelines for healing and try to polydrug a process with no scientifically proven data-driven solution.

Because physical and mental symptoms can mimic other chronic illnesses in benzo withdrawal (MS, fibromyalgia, chronic fatigue, long Covid, borderline personality disorder, etc.), some patients are mistakenly diagnosed. Because of stories I read on this forum, I have guarded against being poly medicated or receiving unnecessary treatments for symptoms. Trust me; doctors have offered me many pills like Lyrica and Abilify, and treatments like TMS, which I declined and which could actually make things worse. 

Unfortunately, I was put on a small amount of Seroquel by a top 5 hospital, which I now have to taper. I hadn't slept for two weeks when they put me on that stuff, and I was in no position to rationally decide on taking that medication. Knowing what I know now, that sleep would have eventually adjusted, I would not have taken other medicines.

I started tapering 1-2 percent of the small dose last night and will continue over the following months. Somehow I slept 8.5 hours despite the taper and woke up once with breakthrough anxiety-- clearly from the taper. I had an uptick in pain and extreme fatigue this morning. I hope this taper will be uneventful.

I have had both mental and physical symptoms from Ativan withdrawal. In my case, the physical symptoms have generated the mental symptoms. If the physical symptoms dropped off, the mental would improve immediately. Including anxiety which I have no reason to have at this point other than this horrific experience.

I am not looking to achieve side effects. Trust me, I would much rather spend my life achieving goals. But side effects are what it came to for now. And this list of symptoms is by no means a competition. I want you to be healed just as much as I desire total healing for myself. My goal for all of us is ZERO symptoms. In my case, many symptoms have resolved, many are improving, and some have been the same up until today.

Here is a symptoms list along with timelines of resolution or persistence:

Acne – M2 RESOLVED with a zit/cyst here or there every once in a while

Burning gums/teeth – M1 RESOLVED

Clenching of neck/hands/feet/chest/weird tensing of muscles and joints– M2 RESOLVED

Constipation – M1-2 RESOLVED

Dizziness– M1-3 RESOLVED

Ear fullness (left ear) – M1 RESOLVED

Feet numbness – M1 RESOLVED

Irregular bowel movements – M1 RESOLVED

Lack of appetite – M4 RESOLVED

Lower back spasm – M1 RESOLVED

Nightmares – M3 RESOLVED

Nausea – M3 RESOLVED

Numbness in body and extremities – M1 RESOLVED

Oral thrush (fungal tongue infection) – M1 RESOLVED

Paresthesia (tingling) in hands and feet – M1 RESOLVED

Pulled shoulder – M2 RESOLVED

Sinus pain/frequent need to blow nose – M3 RESOLVED

Sore Scalp – M2/3 RESOLVED

Anxiety – M4 IMPROVING

Difficulty Concentrating – M4 IMPROVING

Dissociation – M4 IMPROVING

Depersonalization – M4 IMPROVING

Emotional numbness M4 IMPROVING

Extreme fatigue – M4 IMPROVING

Executive Function– M 4.5 IMPROVING

Fear of being alone – M4 IMPROVING

Inability to feel or experience pleasure – M4 IMPROVING

Insomnia –M4 IMPROVING (Got worse then better, slept 9 to 12 hours/night this past week each night for the most part)

Intrusive thoughts – M4 IMPROVING

Migraine – M4 IMPROVING

Mood Swings / Random outbursts – M4 IMPROVING

Neck Spasms – M3 APPEARED, M4 IMPROVING

Panic Attacks – M3 WORSE, M4 IMPROVING

Sensitivity to light – M4 IMPROVING

Sensitivity to stress– M4 IMPROVING

Sensitivity to being in public – M4 IMPROVING

Suicidal Ideation – M4 IMPROVING

Tinnitus bilateral 24/7 M2-4 IMPROVING

TMJ pain, excruciating, felt like face was going to pop off month 1-2, M4 IMPROVING

Weight loss (became skeleton) – M4 IMPROVING appetite is back, weight coming back on

Being primarily housebound/overwhelmed by going into public– SAME M1-4

Breathing difficulty – SAME M1-4

Depression – SAME M1-4

Dry Skin – SAME M1-4

Ear popping – SAME M1-4

Frequent urination – SAME M1-4

OCD behavior – SAME M1-4

PTSD – SAME M1-4

Rapid Aging (I went from looking ten years younger than my age to ten years older) – SAME M1-4

Hyperacusis – BETTER M2-3, WORSE M4

Strange skin sensations (palms, legs, feels like creeping cheesecloth over the skin, etc.) – COMES AND GOES M1-4

I had some noticeable differences in month four but have yet to have an official window. I envy those who fall into the window/waves pattern. Even though I get it – waves can be tough. I haven't had a proper window yet where symptoms drop off; I wish I had this glimpse of normalcy you are lucky to have if you have windows!

That being said, I laughed for the first time this past week. I was able to make light of the symptoms a couple of times, even though this is far from funny. I could feel and enjoy how the sun felt on my skin. I felt love for my dog again – the emotional numbness wasn't as bad. I was able to do some work and experience some executive function returning. Before this, I could not read and use a basic website. Yikes. Scary. I watched a crappy reality show to distract myself, and I was able to follow the storyline and not have a panic attack during or after it. This was progress. I also drove a rental car this week, which would not mean anything under typical circumstances. However, to drive a car I wasn't familiar with and adapt to that experience seemed miraculous. (I have not driven much in the last four months… let alone an unfamiliar car.) I am grateful I have had some lighter moments recently—some signs of progress and healing.

I wish I could spare everyone in this forum the horror they have experienced. I hope if you are reading this and deciding whether to take a benzo or taper quickly off of one, that you decide against it. I never imagined I would be someone’s warning about taking medication. 

While my mindset has improved, and I am determined not to let a little white or orange pill beat me, I am also surrendered to reality and agree with what is. I hope the coming months bring additional relief, healing, joy, and normalcy. Until then, I will be taking everything one step at a time.