Everyone asks me, “Are you sure it’s benzo withdrawal?” Of course, I can’t diagnosis anything as I am not a licensed M.D. But I can say, “If it walks like a duck, looks like a duck, and it quacks like a duck, it’s probably a duck. Most people are worried that they’ve gone crazy or have some strange disease. Both are legit worries, I suppose, but if you are on a benzo, tapering a benzo, or off a benzo and having typical benzo withdrawal symptoms, chances that you have suddenly lost your mind or that you’ve developed a bizarre disease out of the blue, are pretty much zilch, I’d say.
Of course, it confuses you when your doctor tells you the typical myths about benzo withdrawal. “It doesn’t exist.” “It can’t last more than a few days.” “It only happens to people who are prone to addiction.” “You weren’t on it long enough to have a problem.” You know, all the misinformation we hear at doctors offices. I’ve had people in florid withdrawal call me from rehabs that “specialize” in benzo withdrawal. They tell me that the staff says “It’s not withdrawal.” They swear they’ve never seen anyone have a problem with their rapid taper protocol. So those people who called me are frantic to know, “IS THIS BENZO WITHDRAWAL??!!” We go down the list of symptoms and check them off one by one. Usually, it doesn’t take long to connect the dots.
When I had the wave from hell at three years off, I was convinced that it was no longer benzo withdrawal. I thought for sure I was doomed to a life of intrusive thoughts, derealization, and a laundry list of other very unpleasant things. Of course, all of the things I was experiencing were benzo withdrawal symptoms, but I couldn’t fathom how it could still be benzo withdrawal three years from my last dose. I mean, come on! That’s ridiculous. But, it wasn’t ridiculous. It was benzo withdrawal. Every. Last. Stinking. Symptom. When the wave finally washed me up on the shore, exhausted and gasping for breath, I got up and walked away. I never looked back. It was finally over. All the weird mental stuff had finally played itself out.
Are you wondering if your symptoms are benzo withdrawal? Here’s the latest list compiled by people in benzo withdrawal:
Abdominal cramps
Abdominal pain
Acid reflux
Acrophobia
Aggression
Agitation
Agoraphobia
Air hunger
Akathisia
Allergies
Amnesia
Anger
Anhedonia
Anthophobia
Anxiety
Apathy
Ataxia
Back pain
Balance issues
Benzo belly
Blepharospasm
Blurry vision
Body aches
Body feels frozen
Bone pain
Brain zaps
Bruxism
Burning sensations
Cardiovascular issues
Catatonic
Changes in personality
Chemical sensitivity
Chest pain (can mimic heart attack)
Choking sensation
Cognitive issues
Cold intolerance
Concentration issues
Confusion
Constipation
Convulsions
Cough
Cranial tightness
Crying spells
Delirium
Depersonalization
Depression
Derealization
Diarrhea
Dilated pupils
Disoriented
Distorted perception
Dizziness
Drugged sensation
Dysphagia
Dysphasia
Dysphoria
Dyspnea
Edema (especially of ankles and face)
Electrical sensations
Encopresis
Excitability
Existential angst
Eye dryness
Fatigue
Fear
Flashbacks
Flu-like symptoms
Food intolerance
Formication
Gait abnormalities
Gastrointestinal issues
Guilt
Hair loss
Hallucinations
Hay-fever
Head pressure
Head sensations (tight band around head)
Heartburn
Heat intolerance
Heightened senses
Homicidal ideation
Hopelessness
Hydrophobia
Hyperactive
Hypersensitive to stimuli
Hypertension
Hyperventilation
Hypnogogia
Hypotension
Hysterical
Impending doom
Impotence
Inability to handle stress
Inappropriate laughter
Incontinence
Inner vibration
Insomnia
Intrusive thoughts
Irrational fears
Irregular breathing
Irregular heartbeat
Irritation
Jumpiness
Lethargic
Leukonychia
Libido impotence
Lightheadedness
Looping thoughts
Low self-esteem
Lucid dreaming
Malabsorption
Mania
Memory impairment
Menstrual irregularities
Metallic taste
Migraines
Monophobia
Mood swings
Morbid thoughts
Muscle pain
Muscle spasms
Myoclonic jerks
Nail Pain
Nausea and vomiting
Neck pain
Negative thinking
Nerve pain (hitting non-specific areas of the body randomly but for short bursts)
Nerves, All nerves firing off
Nervousness
Neuralgia
Neuroleptic malignant syndrome-like event
Neurological problems (topical nerve anesthesia)
Neuropathy
New allergies
Night apnea
Night sweats, Rashes
Night terrors
Nightmares, vivid dreams
No feelings of fun or laughter
Nosebleeds
Not knowing who you are
Numb area on bottom of left foot
Numb right foot
Numbed emotions
Numbness and tingling in face
Numbness and tingling in feet
Numbness and tingling in hands
Numbness in any part of the body
Numbness in arms
Numbness in face and left side
Numbness in fingers
Numbness in head
Numbness in lip and tongue
Obsessions or obsessional repetitive thinking
Obsessive and compulsive thinking (OCD)
Obsessive compulsive disorder
Obsessive thoughts
Occasional right eye pain
Oesophagitis
Organic brain syndrome
Outbursts of rage or aggression
Overwhelmed feeling
Overwhelming feeling that you are going to die
Pacing
Pain in eyes
Pain in hands and feet
Pain in previous surgical sites
Painful scalp
Pains in neck and shoulders
Panic attacks
Papular and maculopapular rashes
Paraesthesia (Pins and needles)
Paraesthesiae (numbing, burning and tingling; pins and needles)
Paresthesia (numbness, tingling)
Paralexia – the mixing up of words in texts.
Paranoia
Paresthesia – “A thousand needles”
Perceptual disturbances and distortions
Peripheral nervous system issues
Persistent, unpleasant memories
Personality changes
Perspiration
Perspiring, night sweats
Phobias(hydrophobia, agoraphobia, monophobia, acrophobia, anthropophobia and others)
Photophobia
Photosensitivity
Pins and needles
Poor concentration
Poor judgment
Poor memory
Poor muscle control
Poor short-term memory
Poor sleep
Post Traumatic Stress Disorder
Postural hypertension
Pounding in my head
Premature ventricular contractions (irregular heart beats)
Pressure in head
Pressure in the inner ear and outer ear
Problems with vision
Prostate pain
Pseudo-Multiple sclerosis (Medically documented cases of misdiagnosed MS who have recovered after withdrawal)
Psychomotor impairment
Psychosis
Psychotic symptoms (usually transient and confined to rapid withdrawal)
Pulsating all over my body(also visible)
Pulsating in right temporal area especially upon exertion
Pulse thudding
Racing heart
Racing thoughts
Rage
Rapid changes in body temperature
Rapid mood changes
Rapid mood fluctuations
Rapid weight loss
Rash under brows
Rashes, blotches
Rebound REM sleep
Rectal bleeding/burning
Red burning eyes
Reduced alertness
Reduced blood pressure
Reduced or increased appetite
Reduced stress tolerance
Resignation – “what is the point of quitting?”
Respiratory Breathlessness
Restless legs syndrome
Restless legs, arms
Restlessness
Rigidness and jerks
Room spinning
Scalp burning
Seeing spots before the eyes
Seizures (fits) (Almost unknown if people reduce gradually, more common for people using high doses who stop suddenly)
Sense of instability- the ground seems to move beneath one’s feet, one walks in the air
Sensitive feelings
Sensitive or painful teeth
Sensitive to light and stress
Sensitive to loud noises
Sensitive to music
Sensitivity to smells
Sensory disruption
Severe body pain
Severe fatigue
Severe head pain
Severe headaches
Severe muscle rigidity
Severe pain in stomach
Sexual Impotence
Sexual problems (changes in libido)
Shaking
Shallow breathing
Shivering, feelings of extreme cold or hot
Short-term memory impairment
Shoulder pain
Sinus pain
Sinusitis
Skin burning patches
Skin insensitivity
Skin itching, tingling, burning
Skin problems (dryness, itchiness, rashes, hives, slow healing, burning)
Skin sensitivity
Skipping heart beats
Sleep disorders
Sleep disturbances
Sleep paralysis
Sleep problems
Slow heart rate
Slow thinking processes
Slurred speech
Soapy taste in mouth
Sore eyes
Sore gums
Sore mouth
Sore tongue and throat
Sore tongue and thrush
Sore, itchy eyes
Spaciness
Speech difficulty
Spine (burning sensation)
Stabbing pains in limbs
Stiff arms and legs
Stiff muscles
Stiffness
Stiffness in back
Stinging pain
Stomach and bowel problems
Stomach cramps
Stomach upsets
Sudden sadness
Suicidal feelings (see doctor if you feel you will act on them)
Suicidal ideations
Suicidal thoughts
Suicide attempts
Sweating
Swelling-bloating
Swollen breasts
Swollen eyes
Swollen vulva
Tachycardia
Taste and smell disturbances
Tearing eyes
Teeth chattering
Teeth pain
Tension
Tension Headache
Tension in neck
Terror
Thinking you are mentally ill
Thirst
Throat issues (tightness)
Throbbing legs
Throbbing pains
Thrush-like symptoms
Thyroid disturbances
Thyroid issues, erratic testing results
Tight achy muscles
Tight head
Tight jaw and temple
Tight muscles in left leg
Tight muscles in neck and shoulders
Tightness in the chest
Tightness in the head
Tingling on scalp
Tingling sensations
Tingling skin
Tinnitus (ear buzzing, popping, ringing, hissing)
Tiny pupils
Tiredness
Tolerance
Too much saliva
Toothache
Trembling and shaking
Tremor or feeling of inner vibration
Twilight sleep
Twitching Muscles (nearly everywhere)
Ulcers in mouth
Uncharacteristic behavior such as shoplifting
Uncontrolled eye movement
Unusually sensitive (unable to watch the news on television or read the newspaper)
Unwarranted feelings of guilt
Urges to shout, throw, break things or to harm someone
Urinary problems (bladder either ‘all on’ or ‘all off’)
Urinary problems (continence or incontinence)
Urinary retention
Vaginal discharge
Vasovagal attacks
Vertigo
Very cold especially hands and feet
Very oily skin and hair
Violence
Visual distortions preceding a migraine
Visual Disturbances – blurred vision, vivid 3D vision, floaters, changing focus, double vision
Visual hallucinations
Vivid dreams
Vivid vision
Vocabulary, loss of skills
Voice weak
Void of normal emotions
Vomiting
Vulnerable personality
Waking early
Water retention
Waves of pain
Weakness, “jelly legs”
Weight gain – weight loss (this may be quite rapid)
Weird dreams
Weird thinking
White blood count, elevated
Wired feeling
Worsening of allergies
Xeroderma (dry skin)
Yellow eyes or skin
Anything on the list look familiar?
I hope that this post has given you some reassurance that you haven’t run off to crazytown. Nah. It just feels that way! Your innate health and wisdom have not been compromised. You are still in there, underneath all of the strange happenings in your brain, mind, and body. It’s just benzo withdrawal!
Brighter days are ahead. Much, much, brighter! I promise.
Hi Jennifer,
52 months off and in the midst of the wave from hell. Looking back over my journals everything I have now, all the symptoms are exactly what I had four years ago when in acute. This is the worst and longest setback I’ve experienced in all that time. The lack of sleep has aggravated everything further.
I’m hanging on for dear life here and praying to be washed ashore soon. My doc came out as he was worried about my high BP and I’ve attempted a small dose of propranolol that he wanted me to take. More fool me took it last week and I’ve now ended up worse than ever. Will I never learn! How do we keep hope alive for so long. Love 💖
I am so sorry you are in a bad wave. They can hit hard, I know. Make sure you are eating super healthy. Lots of dark leafy greens and good proteins. NO gluten. Get outside in the sunshine. Be around plants and trees. (Really, they’ve proven that this helps the brain!) Reduce your stress. Get off of benzo groups for awhile if reading about other people’s suffering is upsetting you. Hold onto hope. Know that this wave WILL pass. Do your best not to tell yourself scary stories and believe them. Attitude is so important. Patience. Acceptance. Distraction. It’s all we’ve got. They do help! Sending you good energy my friend.
Jennifer,
Thanks for this comprehensive list. I was wondering if you ever got burning sensations throughout your body? Last week I started working out vigorously on the bike at the gym and after three days of exercise I started to feel burning going from my hips throughout my torso. Now the burning remains in my left hip area. It comes and goes. I get so scared and start ruminating about what it could be. I am sick of going to doctors, i feel as though I have wasted so much time and energy worrying about being sick. In fact one of the reasons I got on clonazepam was I was getting over the bad effects of inadvertantly mixing alcohol with norvasc, BP med. This is why I started K and it bought me another 6 months of awful tolerance and withdrawal symptoms. I felt i was doing so much better then my trips to the gym unleashed these new symptoms.
Hi Jenn, Thank you for your latest blog, you keep me going on this long, dark and lonely journey!! I can relate to the symptoms list and can validate my own symptoms against it. Even though i don’t know you, you are so special to me, for keeping me posted when I feel blind and scared, and the medical profession and hope have abandoned me.
love to you as always, hope you are well.
Jackie x
Edinburgh
Jennifer,
I also have many loved ones taking Xanax at night for anxiety and sleep. They can’t understand why I would want to come off of klonipin or Xanax. They already know that I have a lot of anxiety and at times a hypochondriac so anything I tell them about benzos will fall on deaf ears. I feel bad for not informing them more but I have tried. I guess right now I have to deal with my own battles. Like Jackie, I feel lost right now. I have days where I feel I am turning a corner and then new symptoms appear. A year ago I had a total hysterectomy and I wasn’t prepared for what life would be like without my hormones. I just feel as though I am not the same woman and then adding benzo withdrawal has been too much. I feel so badly for my daughters. I want to be strong for them but I just haven’t been able to. Listening to you and others is helping though and I am thankful for your blog. Jackie sending good thoughts out to you in Edinburgh.
Hi Jennifer,
This topic has been on my mind lately… well what’s left of it 😄🤣🤓 ha ha !
Intuitively I know it is PBW Protracted Benzo Withdrawal. I am now 1 year off CT after 14 years on Xanax. I have had several medical tests all showing nada except a recent Brain MRI – results CSVD Chronic Small Vessel Disease. I told my new Doctor about my PBWS He told me these are symptoms not a disorder or disease ! I am so discombobulated and in DISORDER , such disarray Yikes ! However very hopeful, full of Gratitude, and a keen sense of humor. I wake each day to the 3 L’s Love Light & Laughter thank you GOD !
Will see a Neurologist this month and looking forward to hearing what he has to say on Benzo Brain Damage.
Blessings to all, Jerry
Although informative, this list is enough to give anyone a panic attack. I have decided to take a brake from this blog, because to heal one has to stop thinking of the illness and look forward. Wishing everyone love on this Valentine’s Day.
I am with Rosalind on this one. Last week I had 3 pretty good days in a row. Not windows but the mental crap let up. Then right back into hell, only it seems to be worse than usual. I thought, just maybe, I was gonna turn that corner. Jennifer, when you went back into that last awful wave, did yu have any partial windows or was is pure torture for 6 months? As I was reading this list to my husband I welled up inside with emotion and sat with tears streaming down. I asked myself out loud, how are we still alive after enduring this torture for so long? I said earlier that I have had all of these symptoms except 4 or 5 of them. Thank you for the list. I think it’s meant to help people to know that what they are experiencing, if its listed, is probably related to Benzo withdrawal and not some serious health issue. If not for a list to refer to I could have visited a doctor a hundred times in the last 32 months. I KNEW it was W/D. I am very anti everything right now, especially doctors. It sure would have been wonderful to have woke up today and felt LOVE. But no, just another regular benzo recovery day. I was so sure the other day that I was going to recover. That feeling is gone, but trusting it wil come back soon to give me some more hope. I hope somebody had a Happy Valentines Day out there! Thanks Jennifer, for your support and encouragement. ♡♡
I forgot a most important question I wanted to ask. Don’t know if anyone else has this going on but when I start to feel like this is really going to end someday, I get the strangest fear overwhelming me. I have been stuck like this so long I’m afraid of normalcy. Like I won’t know how to be normal. Like am I just going to jump into doing things like I used to? I feel so changed, like I’ll never be the same person I was. I don’t really know how to explain it. When you haven’t felt love for your spouse for so long and half the time you don’t even know them, is it like starting over once the good feelings come back? Hope you can help me. I think about it A LOT!
I’m no expert Angie, but I think when normalcy is more consistant you’ll do just fine. I know exactly how you feel. I had a “window” I guess and I NEVER get them and it was so odd to me. I went out to lunch with my husband and it was like all this was a bad dream. I was looking around it was strange, but I felt if I had them more often I could let go and relax more. If we can adapt to this mess. We can adapt to normalcy.
Thanks T. What you said helped. I, too, have had short periods of time where it felt like it WAS going to fade away like a bad dream. If our brains have healed this much, then surely they will take us to the finish line.
Jennifer it would be great if you could write a post on acceptance , everyday I think why me why am I suffering when there are so many awful people out there , still having trouble accepting this is actually happening to me .
I’ll do my best to tackle that subject soon. It’s a hard one to explain, because it is more of a state of mind than it is something that you can do. I don’t know if I have a recipe for it, but I’ll give it my best shot.
Reading all this has helped me tremendously. Have l ever experienced such pain? Emotionally or physically? No. But with positive testimonies & MOST IMPORTANTLY is my faith in God. Knowing together He will protect me & show me the way. I’ve experienced it all pretty much in withdrawal. 9 yrs of high doses of Xanax. On a slow ween right now. Don’t know you all but love & appreciate you. Will pray for all who are going through withdrawal. God adores you!! Remember that! And prayers are welcome for me also.😇😇😇
I Am Going Through A Slow Taper Off Of Valium Right Now …And Just Stumbled Across This Site And Can’t Believe There Are So Many People Like Me …Losing The Weight And Feeling Like A Loco-Motive Just Racing Around Burning Every Calorie I Eat…I Hope to Beat This Without Any Other Illness Happening And Enjoy Life Again…Thank-You So Much Jennifer Leigh…!!! Your Page Here Is So Great …I Look Forward To Reading More …A Visit With My Prescriber Tomorrow I Am Down From 1 (5-mg) Tablet Three Times A Day To 2.5-mg Three Times A Day. I Have Some Weight Loss But Do Have An Appetite So I Hope I Can Gain It Back. I Want To Beat This. And Be Benzo-Free.
I Wrote About My Tapering-Off Of Valium And Just Love This Page ..Stumbled Upon It While Looking Around About Losing Weight On Valium…Jennifer Leigh..You Are A God-Send..God Bless You….I Wrote A More Sub-Stantial Reading But Forgot To Add My Information ..I Hope This One Get’s Through…I Hope To Beat This Addiction To Such A Drug That My Doctor Should Never Have Given Me…I’ve Been Tapering Slowly Since January From One 5-mg Tablet Three Times Daily To Half Of A Five Twice A Day ..Now May 3rd….
Thank you for your post! I am on day 8 of quitting clonzaphem .5mg each night for months and sporadically for 5 years. I would just like to say that I truly believe taking CBD drops every four hours has kept the withdrawal symptoms as minimal as possible. plus there is no high because there isn’t THC like smoking would make you. Before I took them I was on day 4 and having chest pains, terrible paranoia and anxiety in my stomach. Then the tingles and needles all over the body along with dry mouth and I still can’t swallow. Every minute wall hell. When I took the drops within an hour they all got better. I read It helps the GABA receptors and relaxes you. I’m hoping I can make it all the way through to 3 weeks or so using these drops, taking GABA, B vitamins and adrenal support. Any other tips you have are welcomed, or advice on the fear of doing this cold turkey and naturally vs going in somewhere would be appreciated. But if I’m almost through at day 8, I would rather keep going. Thanks for the support!!!
Jennifer, could you please write a post about how one can be supportive of their partner while they are going through withdrawal? My husband has been tapering off of benzos for over a year. I love him very much, but at times it’s been difficult to maintain my patience. If I get impatient or frustrated it’s because I hate benzos and how they can destroy lives. I’m frustrated that some doctors are not better educated about benzos and hand them out like candy. How do I maintain my patience so I can continue to support my husband without losing my mind?
If I hadn’t found you Jen I’m sure I would’ve given up! I need to remain myself on a daily basis that I will be ok. I’m going through 6 month wave, and I was sure it had nothing to with Benzos. I need to come here every few days to remind myself of our wise words. My ears , my teeth , my eyes , my head , everything hurts. I’ve had blocked ears ever sense I went off clonopin 6 months ago.
Thank you for lifting me up. I was sure I was in hell.
Amanda, I will do my best to write one very soon! Thanks for the topic. It’s a good one. Keep healing!
13 years later…still experiencing protracted withdrawal syndrome. Still have facial swelling and hair loss. PH has changed and still not normal. Antidepressant is the only reason I have survived it. 13 years.
Sorry, I should have also shared that it has improved over those 13 years but there are some symptoms that are still hanging on. I have ALOT Of hair so no one else would notice, except for my hairstylist. The facial swelling is bothersome. People don’t necessarily notice it. My father did once. I see it and feel it and it is sometimes painful. When I close my eyes, you can’t see my eyelids because it’s covered by the swelling from they eyebrow. I’ve been to so many doctors had countless blood tests but nothing shows up. I never expected they would reveal anything because I know when it started and what caused it – withdrawal from Clonezapam. I still wake up with an excessively oily face every morning. Feels like someone smeared baby oil all over my face. Never experienced that before weaning of the Clonazepam. I was only on .5-1 mg every night it for 5-6 months to help me sleep. That’s all it took for my body to get severely hooked. Once I started weaning and experiencing the withdrawal symptoms I just wanted this poison out of my system. I followed the doctor and pharmacists tapering recommendations. They were wrong. Two months was too fast. I didn’t think of going back on it because I never imagined that I would still be affected month after month, year after year, 13 years later. As I wrote above, an antidepressant saved my life. My brain chemistry turned upside down after clonazepam. Any anxiety or depression I experienced before clonazepam was always situational. After clonazepam it became chemical and 3x worse. Clonazepam hurt my brain and my body. And doctors have been useless in helping me. They dismiss it completely. Benzos need to be taken out of doctors offices and reserved only for acute hospital care, if needed.
I was on 1mg for about 2 years. I weaned for about 3 months. Got down to .25. It never felt good, ever. So just went for it and in the normal period, about 72 hours descended in to hell. It was so very frightening. I had to send my son away to his grandma. Not functioning. Going about 4 days at a time without sleep. I kept reading at 3-4 weeks you’ll come out. So I kept my head down and focused on that. Nope. At 4.5 weeks I had 2 ok days in a row and I thought ok maybe this IS it! There is an end. And then boom. I descended in to another hell almost as bad as the beginning! Why? I don’t know. The burning is everywhere. The migraines, relentless. It’s now going on 6 weeks. I’m too invested to relapse but I get it
So sorry to hear you are suffering so much. You are going to get better, in time. It’s common for symptoms to wax and wane. We often think we’ve got this thing licked and BAM! It’s back with a vengeance. The good news is that it WILL stop waxing and waning and it will ALL be behind us. Keep holding on.Reach out for help from others when you need to. This isn’t the time to try to gut things out on your own. let others know what you need and accept help. Hope you feel better soon.