Introduction:
Hello. My name is ‘DenzoBenzo’ and I am the founding member of the Vancouver Benzo Support Group (VBSG).
My health problem started about fifteen years ago (aged about 62 yrs) when I began to experience a short mild headache on my way to work several times a week.
Looking back on it, I feel I was probably working just a little too hard considering my age.
After trying out several different medications, my GP finally recommended Clonazepam (i.e. a Benzo) that seemed to worked very well.
However as time went on, my original short/mild headache, gradually changed into a different form of headache that actually lasted all day.
So even though I was taking a doctor prescribed medication, I now started to experience a different type of headache that actually grew stronger and stronger with time.
In answer to this new headache problem my GP said, and I quote "I could take this medication for as long as I liked – even for the rest of my life if I wanted".
Little did I know that after a number of years (in my case five years), my Benzo based medications would actually stop working (referred to as tolerance) and
that a new set of symptoms would emerge being far worse than my original health problem.
More importantly, I never realized that taking a Benzo based drug on either a short or long term basis, could actually cause BRAIN DAMAGE and this,
it seems, is exactly what happened to me.
At this point I began to search the internet for any/all information about how to handle a Benzo 'tolerance' problem. The overwhelming advice offered by all
previous Benzo users, was that you must stop taking the drug ASAP thereby avoiding all further possible side effects on the body and brain.
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Slow Withdrawal Solution:
The preferred solution to stop taking a benzo drug is that one must WITHDRAW SLOWLY, thereby reducing the amount of Benzo taken week by week until you can finally cope without any drug at all.
Luckily, I found in the Vancouver area a Dr.James Wright of UBC Hospital.
He appeared to be one of the very few doctors that not only understood the long term effect of taking Benzos but would also support
and guide a patient through the withdrawal process.
1) First Withdrawal Attempt:
I completed my first slow withdrawal attempt over an eight month period whereby I managed to reduce my Clonazepam intake
from 10 mg daily to zero. Immediately after this eight month completion step, I felt reasonably OK.
At the time I thought this was the end of my "Battle with Benzo". Little did I know that, in fact, it was only just the beginning!
Immediately following this first eight month withdrawal attempt and whilst being completely drug free for the next eight months,
all withdrawal symptoms simply continued to get worse and worse and it became obvious that NO healing had occurred whatsoever
during this first withdrawal attempt.
2) Second and Third Withdrawal Attempts:
To keep things simple, I will simply state that during two more withdrawal attempts, absolutely no healing had yet occurred.
I will mention however, that between the first and second withdrawal attempts, I did retake the Benzo medication for about eight weeks or so
simply to ease my health problems while taking short vacations. In retrospect this probably made matters worse due to a recognized 'kindling' effect
whereby retaking of further doses of Benzo will/could actually make all current symptoms much much worse.
Slow Withdrawal Results:
Situation as of June 2019:
As of this date, I have been drug free for 18 months and I never felt worse. As each month passes my symptoms simply get stronger and stronger.
I am experiencing all of the symptoms listed below but about twice as severe as during my first withdrawal attempt.
It appears that because I took a Benzo based medication for over five years or so, I may not be able to fully recover.
Situation as of December 2019:
For the last six months (since June 2019), my withdrawal symptoms have simply continued to get worse and worse as each month goes by.
And at this point in time, and given the increase severity of all my MOTOR symptoms, I am expecting even stronger symptoms such as a seizure etc.
in the coming months. I do realize that since I took a Benzo medication for such a long time (five years or so) there will definitely be a lot of damage to my brain.
And from my point of view, it does seem true that the longer you take Benzos, the more damage will be done and the longer it will take to heal.
I can only hope that over the coming months, things will get steadily better. I will try to keep this blog up to date.
Situation as of March 2020:
Sad to say that all my symptoms have continued to get worse and worse over the past three months such that by the end of March I am feeling the worst ever. Each day I experience the same cycle of events as follows.
Fundamentally, all my basic MOTOR symptoms remain present throughout the entire day and, although I feel very uncomfortable, they usually remain at a manageable level. However, during the night while I am resting and relaxing, all symptoms simply get stronger and stronger.
With luck, I usually get three to four hours sleep at night. But as the night goes on, my Benzo damaged brain simply continues to push out more and more feelings of nervous stress throughout my entire body.
Hence, during the early morning hours, I am usually awakened by horrific nightmares due to the increase in all aches and pains throughout my body. By the time I get up in the morning I am feeling absolutely terrible.
It now seems only to clear that my Benzo brain simply cannot move into sleep mode at night. Further, it is obvious that over the past two years, or more, absolutely no healing has occurred whatsoever.
I still have no idea where I will end up fighting this complaint. I guess I will just have to wait and see.
List of my current Motor symptoms as of March 2020:
During my research into Benzo withdrawal symptoms it became clear that, in my case, all my symptoms are classified as 'Motor' symptoms as defined by Prof.Ashton.
Motor symptoms simply describe all of the possible 'physical' withdrawal symptoms that one is likely to experience.
In my case, I am happy to state that I experienced absolutely NO mental withdrawal symptoms whatsoever.
In my view, the apparent cause of all Motor symptoms can be directly attributed to the Benzo Brain Damage (BBD) which immediately impacts the Central Nervous System (CNS)
which in turn causes massive stress and tension to be spread throughout the entire body.
Specifically, this over-load of 'stress' in the brain then transmits itself throughout the entire body via the central nervous system (CNS)
which in turn causes a multitude of unpleasant withdrawal symptoms such as those listed below.
List of my withdrawal symptoms as of March 2020:
1) Continuous headache 24/hrs per day that does NOT respond to any aspirin type products.
2) Constant stress/tension throughout entire body distributed via CNS.
3) Constant tingling throughout entire body especially in the hands, legs and feet.
4) Muscle aches, pain and stiffness throughout entire body.
5) Periodic stabbing pains in the chest and across the area of the heart.
6) Irregular and ‘heavy’ heart palpitations that occur randomly throughout the day.
7) Frequent heart palpitations.
8) Frequent heavy heart beats.
9) Frequent twitchy nerves in chest and solar plexus areas.
10) Frequent leg cramps during the night.
11) Tinnitus both ears.
12) Huge sinus blockage
13) Constant feeling of physical exhaustion.
14) Massive short and long term memory loss.
15) Constant constipation.
14) Occasional burst of diarrhea.
Update on my recovery situation during 2021:
I think it must be very unusual for anybody to suffer from Benzo withdrawal symptoms for the
four long years that I have.
But I would like to point out that:
- I took a Benzo pill every day for five years.
- And after reaching tolerance I have been suffering for severe withdrawal symptoms for yet another
four years.
All my withdrawal symptoms are exactly the same as listed above but as each month goes on, all symptoms tend to get stronger and stronger.
March 2021:
I had to go into emergency in my local hospital for two days.
My symptoms were so strong that I actually suffered from a dizziness in the head
whereby I nearly fainted.
Also, my heart started to miss beat ranging anywhere from 30 bps to 120 bps changing every few seconds or so.
The doctor said he had never seen anything like that before.
These were undoubtedly the strongest withdrawal symptoms I have ever experienced.
October 2021:
During this month I have experienced the worst and strongest withdrawal symptoms ever!
For example, on the last day of October, after awaking up as usual about 3:00 am, for the first few seconds I felt completely paralysed. Really scary stuff!
This wore off quickly but I was left aching all over with the biggest hit on my entire nervous system ever. Next stop almost certainly hospital!
November 2022:
Once again, I have to report that all symptoms have gotten even worse. For example, I am now experiencing my first ever “electric shock” symptoms down the lower legs which are extremely painful indeed. The pain does not really feel to be in the muscles,
but rather, more within the nervous system itself. Although these flashes of pain are extreme, they only last a few seconds or so. Of course, this new symptom could continue to get even worse over time. Sadly, this also indicates that my fight with Benzo withdrawal is far from over.
February 2023:
Sadly, I have to report that all my symptoms are still getting progressively worse and worse. One symptom in particular is becoming very annoying as follows. Over many months my nose has become more and more runny with mucus. During the day I can usually breathe OK. But during the night, this mucus turns solid and, of course, ends up blocking my nose to the point that I cannot breathe properly. And as all symptoms have continued to get worse and worse with time, I am now at the point where I am continually woken up during the night simply because I can't breathe properly. This is turning out to be a really annoying symptom. Since all my ongoing symptoms are still getting stronger and stronger, I can only hope that I am still a long way off from experiencing a 'seizure'. But who knows?
July 2023:
Once again, I have to admit that all my Benzo withdrawal symptoms are still getting slightly worse and worse with time. In particular, I want to mention a new symptom that started about three or four months ago as follows. When I awake early in the morning, I get a sort of quivering feeling down throughout my chest and across the stomach area. I am 100% certain that it is caused by the nerves in my chest being under attack. Fortunately, I found an easy way to stop this symptom. For a few seconds I just deliberately tense up all the muscles in the chest and stomach area. And fortunately doing this does almost instantly quieten down the nerves to a normal level again. I think it is easy to believe and understand that Benzo Brain Damage (BBD) does indeed immediately negatively affect the nervous system throughout the entire body.
February 2024:
Sorry to report - all my symptoms are now the worst ever. For example, I just experienced a brand new symptom whereby my entire body became tingly and dizzy which caused me to nearly fall over and collapse. Glad to say, it only lasted a few minutes, after which I dragged myself back up and continued to do some more gardening. I guess that I'm one step nearer to the end - don't you think?
I mostly wanted to mention my current very long six year struggle with Benzo withdrawal to let other people know that it could also happen to them. So, if you have also been struggling this long then - hang in there Bud! You are not alone.
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General Observations:
Below is a list of some general observations as to how my symptoms effect my body on a daily basis.
1) The basic withdrawal ‘Motor’ symptoms always remain present 24 hrs per day.
2) Motor withdrawal symptoms do tend to hit different parts of the body at different times.
3) Throughout the day if I work hard either mentally or physically, I tend to feel somewhat better. But, beginning in the early evening and within minutes of relaxing, all symptoms will immediately begin again with all their accompanied discomforts.
It has been suggested that while I am busy working, that I am merely being ‘distracted’ away from my problem. However, I feel that this is NOT the case because my symptoms are always present and noticeable to some degree.
To put it another way “The more I relax the worse I feel”.
4) Throughout the evening as I begin to relax, all symptoms will begin to steadily increase.
5) After retiring to bed, I will generally only sleep for about 2- 3 hours before being awakened by a huge increase in all symptoms that manifest themselves as ghastly nightmares
that shake me to the core and affect my entire psyche. As the night progresses, all symptoms will continue to get worse and worse.
6) On arising the next morning, the increased symptoms persist until I begin my daily tasks.
7) During the day as I keep busy and somewhat distracted from my health condition, the symptoms will diminish but only very slightly.
It is very obvious (in my case) that my brain is stuck in 'top' gear and is unable to switch into 'relax' mode during the night.
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