How I Got A Brain Injury From Prescribed Medications

My name is Michelle and this first blog post is my personal story. I would be honored to tell your story too.

It is hard to know where to start with mine, but the last 15 months have been without a doubt the worst of my life and I still don’t have the words to explain the sensory nightmare that I have been in, among other things too. I have had improvements and I will talk about those too, however I am still injured and healing from what happened to me.

I hope my story explains my compelling need to help others NOT go through what I have been through.

How I got a brain injury from prescribed medications

IT’S COMPLICATED

It is worth stating up front that benzos should not be taken for more than 2-4 weeks due to the dependence and tolerance issues and I have been on them now 13 years.

My story is complicated:

underlying illnesses
polydrugged, ending up on multiple prescription meds
baby loss at 18 weeks
rapid tapers (too fast!) followed by updosing and reinstatements of the meds I had come off or reduced. This is something I now know is not good as it can make repeated attempts to withdraw increasingly difficult.
corticosteroid injections causing cross tolerance to my benzos causing a “CT state” (cold turkey state - one mirroring a person who has been abruptly cut off high doses of psychiatric medications). This is what gave me a brain injury that I am still recovering from.

MEDICATIONS, BABY LOSS AND UNDERLYING CONDITIONS

I was prescribed Temazepam, Clonazepam, Gabapentin and Zopiclone as part of treatment for ME/CFS that I developed from a viral infection in 2002. The symptoms being treated were intractable insomnia, nerve pain and hypersensitivity.

I have other conditions too - hEDS, OI, Patulous Eustachian Tube, Pulsatile Tinnitus are the main ones that cause me issues.

You may be reading that list and thinking I literally have ALL OF THE THINGS and it does feel that way at times. I consider my primary underlying condition to be ME/CFS and my current state is that of ‘iatrogrenic injury’.

It has been suggested now that these medications have now caused a worsening of the very symptoms I was taking them for and also made my underlying illnesses worse too. I have been on benzos (and other meds) for about 12 or 13 years now, up and down with tapers that were too fast, while I was pregnant. We lost our son at 18 weeks in 2014 - I was in horrendous withdrawal during the pregnancy and no one told me. I also had 5 miscarriages the year before that. It was brutal and I still am not sure how I survived it.

UPDOSED AND REINSTATED

After we lost our son, I was in very bad shape. I was updosed (my dose increased) and reinstated (put back on) with multiple medications and I did start to improve from the horrible state I was in, but I never actually got back to where I was before the rapid tapers. I believe this was tolerance to the medications starting for me (I just thought I was getting sicker). I knew they were no longer working as even with them, my sleep was still awful and I still had a lot of nerve pain. I accepted this as my new normal and tried to carry on with life.

MORE MEDICATION

In 2015 I was put on Seroquel for sleep. It helped but also made me gain a lot of weight and my heart did not feel great on it. I put up with being on it long enough till I could taper off it, once I felt I could sleep a bit more. It took me 9 months to taper off 75mg in 2016. I now consider this a very nasty drug and not one I am keen to take again.

This same year I was also put on HRT (for sleep and early menopause). It turns out I was NOT in early menopause and should never have been on HRT in the first place as these hormones interfere with benzos too. Ultimately the HRT caused me to have much worse symptoms further down the track.

THE TAPER IN 2017

In 2017 after getting terrible medical advice from my local GP I decided to start '“reducing my medication load” and I started to taper Temazepam from 40mg to 30mg and Zopiclone from 2 tabs to 1 tab. I was not in any support groups and had no supervision. The taper was horrendous. I was very very sick and I had no idea why. It was during this time I had the most awful insomnia kick in again and I lost an insane amount of weight due to the fact I could not eat.

I was sent to many many specialists all who found nothing wrong (of course). I dropped to 51kg (I am 173cm tall). I was so sick I had to sell the business I had created and loved. This was devastating. We still did not know why I was so sick or why I could not eat. By this stage my body put itself into anorexia and I was force feeding myself 3 times a day. I stopped tapering in October. I started to improve a tad but I had not connected the dots yet.

My symptom list is/was long and I will add it below. The words on the page may have meaning for you intellectually but I urge anyone reading to please try to think about how it might be to be living with this, 24/7 without respite. It was, and is barbaric torture for those who must go through it.

After selling my business in 2017 (because the medications had made me so sick), I intended to use 2018 to focus on my health but as bad luck would have it, I had two corticosteroid injections into my spine on January 31st 2018. Boom. My life changed.

CROSS TOLERANCE - ‘COLD TURKEY STATE’

The corticosteroid injections went straight into my central nervous system (CNS) where they hit the same part of my brain that benzos work on (the GABAA receptors). The injections were supposed to help the pain I had due to 3 disc tears/bulges in my lumbar region. They did take away that pain but what they gave me is much worse.

This phenomenon (one medication causing someone to have withdrawals from a different medication) is something called cross tolerance. The layman's explanation given to me is it was like my already fragile brain was given not just an updose but an overdose of something that my brain thought was a benzo. With my brain already being so fragile from the taper, these injections were probably one of the worst things I could have agreed to but no one informed me of the risks.

As the injections ran out within a few months, it was like being Cold Turkeyed (CT) off high doses of psychiatric medication - something that can cause psychosis, seizures and death. Suicide is a huge risk with cold turkey (stopping abruptly). My decline was scary and fast. I was still very sick from the taper in 2017 and the effects from these injections hit me right out of the blue.

The first few months I really had no clue what was happening but I knew it was related to my meds. I felt super spacey and weird, pretty much not myself and confused and not yet able to ask the right questions. I had a ‘red herring’ around the same time when I forgot to take some other medication and I thought perhaps that was why I was so messed up. But ultimately it turned out be the cross tolerance from the injections causing a CT state in me. I sought help from a Psychiatrist who gas lit me so hard and said there was no way I was in withdrawal and I needed to “work on my anxiety”.

I was then forced to check in to a local community run detox center JUST to get assessed as even being IN withdrawal - I could barely walk by this point. The assessment scored 60/80 - there was no doubt I was in the grips of severe benzo withdrawal. I hated that I needed to go to the clinic but I am glad I did as after that I started to get more help and people believing me.

I had severe limb weakness by April and then in May I started to have issues walking or even holding a phone. I was getting very weak - and very fast. I stopped driving in May (I could only ever drive short distances anyway but now even that was impossible). I started to use mobility aids in the home. Chairs in the kitchen and bathroom. I was nervous my dog was going to knock me over when I tried walking so I needed to be careful around him.

By June I could not walk at all. Maybe 50 steps to hobble to the bathroom, or crawl. I spent that whole month sitting on the floor crying and in hindsight I realise now most people would have gone to hospital but I knew they would not get it and would be of little to no use to me. This has ultimately proven to be true.

We then started to look for motorized wheelchairs for me to use inside the home. In July I started to notice a slight improvement in my legs so we held off on the chair and I’m currently managing 1500 steps a day in my home, I still need a driver however for my appointments.

In 2018, I realised after about 4 months, that around the time I was getting my period each month, I was becoming even weaker and completely unable to walk at times. The HRT was delivering varying levels of progesterone and estrogen and I felt even more awful every month at this time. We ended up switching me to a static HRT (same levels of hormones every day) to try to ease this a bit and it did help. I noticed my legs were a bit stronger within just 2 weeks. This was November 2018.

I am now waiting out the CT injury from the corticosteroids to see when I can resume my benzo taper. I need to see my Doctor every 3 months to assess my condition. When I resume I will probably taper at 3% a month because of the harm my CNS has already sustained. This puts my taper length at 15 years. It is overwhelming to think of it so I tend to just focus on the day in front of me. If I can speed it up to 5% a month, then it’s 9 years of tapering. I try very hard to focus on the positives in my life and there are plenty, but this blog is about what has happened to me, and it’s hard to sugar coat it.

Many of my current symptoms are physical and neurological (a lot of body pain, burning, buzzing, vibrating, tinnitus, face and head pain, GI issues, akathisia etc). My entire body feels like it is coursing with electricity. I have cognitive issues too which are not consistent, they change up on me. I now deal also with anxiety – something I did not have before but I am learning to manage it. I still have many cognitive and memory issues but they have improved from last year thankfully.

I do not have agoraphobia but the level of sensory stuff (both inside me and outside me) I need to manage now makes it very hard to leave the house unless it’s necessary.

I am practicing radical acceptance as fighting this was doing me no good. I need to raise awareness of what these drugs do so thank you for reading.

MY WITHDRAWAL SYMPTOMS - EXTENSIVE LIST

It is worth stating here again that benzos should not be taken for more than 2-4 weeks due to the dependence and tolerance issues and I have been on them now 13 years.

This includes symptoms from my taper as well as those from 2018 after the injections. I do not have all of these all the time, but I am always symptomatic 100% of the time. I am learning a lot of coping skills. Because we are talking about the CNS (central nervous system) it helps explain why just about every part of me has been affected by this. Without a functioning nervous system what are we? We are just lumps of meat that cant think, speak or experience the world at all. If you don’t have a functioning nervous system, you do not have a functioning body.

Physical and Neurological

Burning skin (head to toe at times). It is like I have been set on fire with gasoline. This reaches 8/10 at least 3 days a week. My feet and legs and left arm are always burning at a minimum of 5/10.
Inner vibrations that start in my feet and work their way up. It feels like my entire body is a balloon and filled with liquid that is being agitated by some kind of machine. I feel like I am being literally consumed from the inside out by bugs. This is one of my worst things to manage now. Sometimes when I go to bed it is right up to my eyeballs from my feet.
My entire body feels to be full of electricity. I have always got bits of me buzzing, burning, vibrating. Sometimes I can feel it surging or pulsing. My heart often buzzes as the nerve that runs across it under my left breast has been affected by this. When my heart buzzed last year it drove me to tears. I am getting used to it now. My body feels like I am being poked with a cattle prod sometimes. Left side is most affected.
Sometimes the left side of my body feels like its being pulled into a vortex. I have struggled to explain this sensation.
I lost the ability to use my arms on a phone and a computer last year and had to stop driving in May. All my limbs were presenting with severe weakness and searing pain. This has improved. I can now do 1500 steps in the home on average.
My ears. I don’t know where to start, but I have constant tinnitus 24/7 now since August 2017 when I was tapering. I also developed a messed up condition called Patulous Eustachian Tube due to the severe weight loss from the benzos and now I am able to hear all my internal body noises, including my heart beat and my breathing and voice inside my ear (like Darth Vader).
At times it feels like I have acid running down my auditory nerve to my ear.
Muscles in my ears were affected. It has been like I have had a bug flapping in my ear hundreds of times a minute. Thankfully this was only temporary and I have not had it since last year.
Muscle twitches and spasms. Some are excruciating and some just plain strange. I could see golf ball sized bits of my leg popping out one night, like watching a frog breathe but faster. At times I had to clutch my neck as each side of my neck spasmed so hard.
I have had the sensation of my face and neck ‘moving’ and strangling me. I am still trying to figure this one out and I am waiting to see a movement disorder specialist. This felt like I was being strangled by someone from behind grabbing my neck. I had to apply pressure myself to try to relieve it. It was terrifying.
Double vision. I can feel the same acid feeling in my optic nerves sometimes that I feel in my left auditory one. It feels like acid then my eye waters a lot.
Eye ball ‘pulling’ - my eyes at times feel like grapes having the skin pulled off.
My eyes feel like the area around them is fuzzy and full of ‘electric cotton wool’. Sometimes they flutter on me and I have to push my head into the pillow at night to relieve it. This is an occasional symptom for me this year.
Head pressure and head pain. I was utterly incapacitated by this last year and its not like other headaches that anyone can understand. This Withdrawal headache is unique and its hideous. It comes with such bad cognitive dysfunction I felt so brain dead, like I had rocks in my head. Thankfully this one has improved. I called this the 'concrete beanie'.
The 'creepy octopus' - the sensation of electric eels in my brain.. movement and electricity. This was bad last year and thankfully has eased up a lot.
Burning brain - another horrible sensation of my brain being on fire. I still have this one on and off. It also feels like it’s full of acid. I have this if I get exposed to chemicals my body does not like. An uber ride with a deoderizer in it made me sick for 3 weeks.
My face - I have neuraglia around my eyes, ears, back of my head, down to my neck - this never goes away. Sometimes there’s a sense of movement to it.
Numbness - hands and feet are badly affected - my feet feel like electric cotton wool now.
Razor blades - I don’t even know what this is, but it feels like it in my feet sometimes and strangely my left breast.
Insomnia.
Shakes and tremors - worse at night, my left side of my body is worse. My legs are quite 'jangly' now at times.
Sometimes the entire left side of my body shudders internally. I have noticed these shakes or shudders can be visible at times.
Akathisia - intense internal restlessness. This is one of the worst symptoms of withdrawal I think.
GI issues - I still have no appetite and need to force feed so I don’t forget. I don’t enjoy food, it’s a task to get out of the way now. I have alarms going off three times a day to tell me to eat.
Muscle wasting - my body has been totally stripped of it due to the excess cortisol and the rapid rate of the weight loss that began with the taper in 2017.
Chills, sweats, chatters, jerks - bad last year, they have eased up this year so far.
Extreme fatigue and exhaustion.
Jaw clenching - just like a junkie. My lip gets sucked through my bottom teeth. Worse at night.
Allergic reactions and new sensitivities- just about everything I eat now, makes me feel unwell to some degree.
Something I call the 'reverse voodoo dolly' when I get surges of electrical activity and it feels like I have millions of pins pushing OUT of my body. This one is mainly in my legs.
Feeling of being covered in bugs - this was last year and I don’t have it now so much.
Full body jerking (a few times last year).
Rubber band snaps up and down the backs of my legs - I had this for 3 days straight last year. They were happening about 120 times a minute I guess.
Hair loss. This is getting bad. I am considering cutting it all off.
Aging - this makes me sound vain but I have aged unbelievably since this mess began.
Menstrual issues.
At times it has not only been hard to walk, it has been hard to sit up. Last year was terrible for this at times.
Pain in my teeth (nerve).
Hypersensitive - smell, noise, movement, light etc. I find it hard to watch brightly colored shows. Perfume makes me so ill. Everything is loud.
My legs are always burning, vibrating, buzzing, aching. Jelly legs or concrete legs. When they are not stiff and painful they are weak and floppy and don’t hold me up. This makes it hard to leave the house.
Most of last year I have needed a wheelchair outside the home for my appointments but it is in storage now as I can walk from the car in to my appointment now.
Pain and throbbing in my lady parts.
The feeling of painful ‘radio static’ in parts of my body - again very hard to explain. I guess I would say zaps of electricity cover it. Head, left hand and left foot.
I am often woken in the night by ‘bolts of electricity’ shooting out my left foot - this is excruciating.
Visible tremors - my left hand usually, sometimes both. My thighs also have them sometimes.
Swelling - sometimes my eyes are swollen shut in the mornings along with my face in general. Sometimes it is just the left side.
Heart rate excessively high.
Orthostatic Intolerance.
Chest pain (on the right). I am getting used to this one.
Feeling of freezer burn (burning and cold) in my feet and legs - 24/7 for this one.
Exercise intolerance way worse than when I was dealing with ME/CFS on its own.
Tremors and muscle spasms - involuntary - all over my body.

Cognitive

States of confusion - last year I could not understand why an android cable would not fit my iPhone. I just sat there confused and did not understand why. Put my phone in fridge and weird things in the drawers. This has improved quite a bit since last year, thankfully.
Memory and lack of working memory - I cant watch TV on my own or read a book easily. I need alarms to tell me to eat. I stand up and don't know why. I find myself in a room, I don't know why. I cant easily have someone read out loud to me unless we take breaks or I take notes. I cant hold the beginning bit in my head easily to follow along. This is improving, but it’s been extremely challenging.
Hard to learn - if its not a skill I learned prior to 2018 or even 2017, its very very difficult now. I need time to process and integrate and I need multiple repetitions to try to cement the learning. This is beyond frustrating as I used to find it very easy to learn things in general.
Long term memories - I lost so many. Some are coming back now. I mostly see my memories in photos now.
My language has been affected - mainly in the evenings. Mostly I find when this hits, I just struggle to answer even basic questions. I feel like I am digging around in my brain looking in empty filing cabinets trying to find the words. I use wrong words, start slurring and sometimes sound drunk at night. This seems to be worse when I am overloaded or tired, which makes sense.
My writing was not great before but its really degraded in the last 2 years.
Maintaining friendships has been incredibly difficult and it is not just real life but online ones too. I have lost friends through this unfortunately.

Psychological

This is hard to talk about but it needs to be said. Part of the withdrawals from Benzos include psychological ones and they have hit me too. The danger for people like me, is we end up with a bunch of inaccurate psych labels unless the Doctor understands the withdrawal syndromes associated with these medications and in my experience, most do not.

As a result of this medical intervention (the injections), in the last 15 months, I have been through the following (some of these have resolved or reduced and I find now I am dealing mainly with intense neurological/body and cognitive issues - and the anxiety that naturally comes with such horrible symptoms).

Anxiety (I never had anxiety before tapering benzos).
Depression.
OCD - this one was severe last year for about 3 months. It was very very strange to find myself compelled to straighten things around the home and feel stressed if they were not ‘in place’ - thankfully this has eased a lot.
States of paranoia, despair, doom, panic (this is when I was in 'acute' withdrawal last year.. I was the most frightened I have been in my life, I have no words). I felt scared, alone, helpless. I felt like I was dying.
Intrusive thoughts.
Overwhelm - I could not open emails for a time, or even an envelope. I could not sit in front of a computer for months last year.
Not diagnosed, but I believe I have PTSD and I will seek treatment for this if I feel I am not improving.
Depersonalization / derealization - at times I have not felt like I am me. This was very bad last year. It was like I was an alien trying to be me. It was sort of like I had been handed a manual that said "How to be Michelle" but when I opened it, all that was in there were the chapter headings and no text. This is improving but it’s still a struggle for me some times.
Crying and emotional - last year I cried just about every day. This has improved and I am less emotional now.
Wanting to die and being scared of dying at the same time (last year).
Loss of happiness and joy.
And finally I must address the withdrawal symptom of Suicidal Ideation. I don't know if that is what I had for 6 months last year.. it might be part of the akathisia. For about 6 months I struggled daily with this. I wanted to die and could not see how I could possibly live this way. Thankfully this has improved. I no longer have this symptom but I still have to manage what has happened to me on a daily, sometimes hourly basis.

SUMMARY AND NEXT STEPS

I have made improvements in the last 15 months and I expect to continue seeing them. This is not a story without hope, but the focus of this first blog is to validate my experience by sharing it publicly and taking the power out of it. I won’t hide what has happened to me or be embarrassed by it.

Please heed my warning if you are on any benzo, antidepressant or other psychiatric medications. A slow taper is your safest way off these. Please do the research and go carefully.

If you are on benzos you also need to be careful what other medications (or herbs etc) can cause CROSS TOLERANCE - please do your own research and don't assume your Doctor will know about it.

I now face a 9 - 15 year taper to get off these medications and then usually up to 2 years after that to still have the brain heal from it. YES - it goes on even once the drug is removed.

The thought of others going through anything resembling my own experience is horrifying to me. I am educated and have means and it was nothing short of a nightmare last year to get the help I needed. I feel so bad for those who do not have the means that I do. What happens to them? What help do they have? I am now part of a global community that is having their very real and very brutal experience swept under the carpet and I am sick of it. We matter. We all matter.

In spite of my circumstances I do have hope. I hope to help others. I hope that I will soon be ready to taper off my own cocktail I should never have been on in the first place. I believe I can do this and I believe in anyone else reading this who may be wondering what their fate is. I believe in you too.

This blog post is longer than I intended and if you made it this far I am truly grateful. Thank you for reading.

Michelle x

This story was originally posted in July 2020.

Michelle passed away in August of 2021 and her story was unpublished from this website due to copying and misuse of her words. We have republished it here with the full support of her friends and family. Michelle's wish was for doctors and other medical professionals to join support groups like Benzo Warrior so they could see first-hand the horrifying withdrawal experience that many face when trying to taper off these drugs.

Michelle was a beautiful person who touched the lives of many and we miss her very much.