Posts Tagged ‘Burning Mouth Syndrome’

Today, July 11th, is World Benzo Day and I couldn’t let this pass without sharing my experience with a prescription benzodiazepine.  At almost 2 years since I finished a 17 month taper, I have mostly tried to put this period of my history on a back burner. It was an ugly time. My family and I paid a huge price for this iatrogenic illness, including the loss of friendships we’d had for decades. To those unfamiliar, here is a very brief summary of my journey:  twitter

1) Summer & Fall of 2012 I began experiencing tongue pain – a burning as though a lit cigarette was in my mouth, and a feeling of swollenness as though I couldn’t close my mouth completely.

I saw my dentist twice and twice had back teeth shaved (turned out this was a needless, costly, meaningless procedure).

I finally saw my primary care physician. I did this reluctantly because I was never a fan of doctors, but after months of pain, I relented. I was 47 at the time and while explaining my complaint, she pulled out the prescription pad and was writing a script for Ativan before I finished speaking. She was very non-plussed. Diagnosed me with Burning Mouth Syndrome caused by hormones since I was going through perimenopause. The only medication I was taking was a rescue inhaler for asthma and I told her I wanted to be on the lowest dose of Ativan possible.

She told me to take 1mg a day everyday for 2 weeks. After that take only as needed for pain, but likely I would have to double my dose to 2mg because this was a very small dosage. She also said I would probably be on Ativan through menopause which could be 5 or more years.

If you know anything at all about benzos, she basically demonstrated the normal lack of understanding of most physicians when it comes to this medication.  This drug should only be taken for 2-3 weeks (see Physician Desk Reference for prescribing info) and shouldn’t be given to someone with a compromised lung function.  Hello? I have asthma.

Likely, her orders to take “as needed” saved me from even more years of suffering because

2)  After 3 months use, I developed interdose withdrawal – basically my body stopped producing gamma-aminobutyric acid (GABA) because the benzo was providing that.  I suffered a list of symptoms including rapid heart beat, high blood pressure, coma like fatigue (sleeping 18 hours a day), dizziness, brain zaps, cog fog, migraines, gastro pain, etc.  In one month I saw 7 doctors, including 2 visits to urgent care.  No doctor could find anything wrong except for high blood pressure which I’d never experienced before, and which went away during taper.  They wanted to add blood pressure meds (I said no), and gave me several rounds of steroids and antibiotics “just in case”.  Finally we discovered the one prescription medication I was taking caused every side effect I was experiencing.

The problem with benzos is that once your brain stops producing GABA, it takes a long time for the neurons to repair.  If you cold turkey the benzo, or taper too rapidly, the body suffers terribly, perhaps for many years, while the brain repairs.  A successful taper means slowly reducing the amount of drug in your body in small enough amounts that you “fool it” and it isn’t shocked by the withdrawal of drug.  For me, the dose reduction that worked was .00125mg per day via a liquid micro taper.  Staying at 7% reduction per month made my symptoms bearable.  Hard, but bearable.  If you are thinking of tapering your drug, please seek advice from benzo experts in the UK who take this iatrogenic illness seriously.


In just a few weeks I will celebrate 2 years since ending my taper.  I wasn’t 100% healed immediately, and it took months for my body to start responding more normally to food, rest, stress, etc.  Since then my husband has retired, my children are done or nearly done with college and we left our home of 20 years and moved to a beautiful mountain town in West Virginia.

I’m part of a support group on Facebook for victims of benzos.  There are MANY groups to join and organizations which are now working hard to get the word out to consumers about benzos since we cannot rely on the medical industry to protect us from dangers caused by Big Pharma.  We just can’t.  Doctors get their prescribing info from pharmaceutical companies who have a vested interest in making money, not healthy patients.  Drug studies do not have to be released if they do not support the positive results Big Pharma wants known.  Lobbyists have power to sway legislators.  Where does that leave the average housewife who simply went into her doctor’s office and said, “Help me”?

When World Benzo Day first began being talked about among my compatriots, I didn’t actually believe anything would come of it.  The irony of this medication-induced illness is that it makes us very very sick for a long time and although intentions are good, projects often dissipate because the workload cannot be met by an army of ailing people against a machine of high powered pharmaceutical/congressional executives.

Then, I started to see the seriousness of this particular group of fighters and the strides it was making.  The question then became, for me, how much of my baggage did I want to unpack in my new town, with friends I’m just beginning to know in this new phase of my life?  I mentioned earlier that we lost friends because of my illness.  That is one lingering aspect of benzos I will never quite get over.  I was very active in my church.  I taught children, worked with teens, held bible studies in my home, hosted tons of events, ran a mothers group……for 17 years at the same church before becoming ill.  Then, my illness.  It felt like I was a leper who was unworthy of care.  I had people tell me (or my husband) this was all in my head….she’d be better off dead…and we had a lot of silence.  My husband went to church without me starting in January of 2013.  We could count on one hand the number of people who supported him or asked about me.  A couple meals were delivered, a few cards, but mostly crickets, including from the church leadership – people whom I thought were friends.  If you read my blog from the time I became ill till now, you will realize this is the first time I’ve ever explained my feelings of abandonment by my church “family”.  I was always very careful to never be specific or bring in the fact that a Christian organization made me feel unloved. I didn’t want ammunition to be used against God, because I NEVER doubted Him. Often the behavior of humans is lumped into the meaning of God, but we were able to differentiate the two. God never fails.

Once I was feeling better, and able to venture out to local places, I began to experience PTSD. I would run into church members and quickly realize that in my absence, stories must have abounded.  It was clear people thought I had a nervous breakdown, was a drug addict, abused them and did this to myself or had a variety of mental conditions. I cannot imagine the gossip which surrounded my health, but it surely has to have been the reason I become persona non grata to many.  My husband retired a full year earlier than planned because I could not cope in that environment where every encounter ripped off the bandage of the hardest time of my life.  I decided to be completely open and honest in this post because I want people to understand the tremendous damage benzos cause which have everlasting impact.  I was lucky to not lose my marriage; many do.  I was lucky that my children were old enough to manage and stay supportive; many other parents have young children or lose their children through their illness.  I was lucky that I learned how to taper and didn’t succumb to suicide; sadly, many many people do not get that lucky.

I’m sharing on World Benzo Day because even though I don’t want to relive this, I don’t want you to ever go through this either.  Please learn from those of us willing to open up all our suffering to the public.

I am you.

I am your mother, sister, daughter, friend.

A simple medical complaint …. listening exactly to my doctor’s directions ….. a life changed forever.

Research any drug before you take it.  Know the dangers.  Ask questions.  And then ask more questions.










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It is bad enough that I have to deal with menopause and burning tongue syndrome, but to also have to endure withdrawal symptoms as I wean myself from the poison – ATIVAN (lorazepam, a benzodiazepine) just adds salt to the wound.  I have successfully moved from 2 mg/day as needed to .650mg daily titrated with water and taken four times a day.  Each day, however, is a new beginning for my brain as it continues to heal, and my body as it learns to adapt to the new, lesser dosage.

The real neat game I get to play is “What symptom will I have to deal with most today????”  Very exciting game and the choices are oh so wonderful:

Dizziness – a personal fave since you can’t do much but sit and be stillmeme

Headaches – the kind where head explosion seems both imminent and likely

Body Vibrations – imagine using a jackhammer all day and even when you stop your body keeps going

Fatigue – no matter how tired, you can’t sleep, but you can’t do much but dream about sleep

Insomnia – ironic given the amount of fatigue

Stomach Pain  – no appetite because most things hurt; once you eat you get a WHOLE new set of fun stuff!!!

Body Twitches – this is a new one!!  Sitting still, and things just twitch.  Nothing else, just stupid twitches.

And the list goes on. And on top of this, now that my Ativan dosage is lowered, I am suffering from the originally Burning Mouth Syndrome.  One side of my mouth feels as though I am sucking on hot coals.  My tongue feels swollen and painful.  This is apparently an effect of menopause which I do not know how to deal with since the med that provided pain relief was killing me in other ways.  I tried to join a support group for BMS on facebook to hopefully find others suffering from this who may have been able to provide suggestions – alas, the moderator of that “support” group read my blog and decided I was a drug addict and not suffering like they were so I was rejected.  Hah!  God Bless America.

Others suffer much worse, so I try to look at this whole experience as an opportunity for growth.  I will get better.  I will learn patience.  I will become stronger because the alternative is not acceptable.  I will be a better, more confident, happier person on the other side of this.

In the meantime, I am being selfish and trying to learn to put myself first.  I can’t plan my life too far ahead since I simply won’t know how I will feel 3 hours from now.   For me, the overplanner who must control her universe, this is a real challenge.

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