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.
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.
List of my current Motor symptoms as of March 2021:
Hello again everyone!
First I must apologize for waiting one whole year before updating my blog about my 'Battle with Benzos'. OK here we go.....
First of all I would like to point out that all my withdrawal symptoms are exactly the same as listed above
- except all symptoms are stronger than ever and, as such, everyday life for me has become more and more difficult.
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.
And the battle is not yet over as follows.
In 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.
These were undoubtedly the strongest withdrawal symptoms I have ever experience.
So, my 'Battle with Benzos' is still on.
I mostly wanted to mention my very long struggle with 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.
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.
Other Significant Health Side Effects:
Over my entire life I have never been allergic to or had any bad reaction to prescription drugs.
However, whilst taking Benzo (Clonazepam) on a regular daily basis, I became severely allergic to anti-biotic drugs such as:- Teva-cloxacillin, Cephalexin and Lyrica. Within thirty minutes of taking such drugs, I experience about 80% loss of balance, then five minutes later 50% loss of eyesight, then again another five minutes later almost reaching the point of passing out.
I add this point as a warning to other people who have been prescribed 'Benzodiazepine' based drugs.
Suggestions On Gaining Motor Symptom Relief:
Firstly, I must state that as of this time, there is absolutely NO apparent treatment for Benzo Brain Damage (BBD).
Neither drug manufacturers, hospital staff nor general practitioners recognize or admit to there being a definite BBD problem.
If you end up seeking help for this ailment (as I did), there is a high chance that you will be simply told that you are suffering from an anxiety problem (as I was - twice).
No one in the medical profession will ever admit that they don't actually know what this BBD problem really is.
However, if you are suffering from physical Motor symptoms you could try the following suggestions in order to gain some general relief and comfort.
1) Muscle Stretching Exercise:
As mentioned earlier, stress within the CNS can impact your entire body from the top of your head down to your toes.
I found that if I deliberatly stressed my muscles, this would in turn cause my nervous system to calm down and bring more overall comfort and relief.
Try the exercise as follows:
a) Lie on your back on a bed.
Exercise #1 Clasp your hands together and place them behind your head. Push your head back on the pillow and slowly role your neck to right and left.
Exercise #2 Clasp your hands together, straighten and stiffen your arms and slowly raise them up and down from your waist to above your head.
Exercise #3 Point your feet and toes away from you as far as you can and slowly raise both feet up and down by bending at the ankles.
Exercise #4 Bend you left leg up as far over your chest as possible. Clasp it with both arms just below the knee and pull the leg gently into your chest.
Now at the same time try to force your leg away from your chest thereby putting your leg under great stress. Then repeat using the right leg.
2) Hot Bath:
Many people will already realize, or believe, that a hot bath can help relax the body.
The usual practice is to run a pleasant bath of warm/hot water then get into the bath and relax for some time.
However if you take this approach, the water will essentially not be that hot in order to allow you to get into the bath and sit down immediately.
I feel there is a much better way as follows:
a) Start with an empty bath tub.
b) Turn on the hot water tap and adjust until it is nice and warm.
c) Put the plug in the bath and immediately get into the bath yourself.
d) Now as the bath begins to fill up, gradually turn the hot water tap hotter and hotter as the bath fills up
At the same time swish the water around with your hands so that it mixes in well with the water already in the bath.
By taking a bath this way, you will end up sitting in a much hotter bath than if you simply sit in the bath from the very start.
During each bath, make sure that you lay back in the bath so as to fully immerse your neck and shoulders as these areas get greatly affected by CNS pressure.
Try to relax in the bath for at least 20 minutes. Afterwards, lie on your bed and allow your body to cool off very slowly.
I personally found a hot bath could temporarily reduce the overall stress in my nervous system by about 50% for 24 hours or so.
3) Hot Water Bottle:
As mentioned, whatever is wrong in the brain can cause massive stress/pressure throughout the entire Central Nervous System (CNS).
Most frequently, this can cause pain and discomfort in the nerves that are centered next to the stomach and just below the rib cage.
I found that placing a hot water bottle over this area for at least thirty minutes could bring significant relief and greater comfort.
Also you can try placing a hot water bottle on the back of your neck for about 20 minutes and see if that helps.
4) Nerve Massage:
You could also try gently massaging this same area mentioned above i.e. the nerves centered next to the stomach and just below the rib cage.
Place the fingertips of the left hand gently over the sore nerve area then push the left finger tips deeper down into the flesh with your right hand.
Now gently move the finger tips in a circular motion over any sore area for five minutes or so.
5) Leg Cramps:
I found that CNS pressure can also cause leg cramps, especially first thing in the morning. If this happens,
immediately get out of bed and stand up straight and tall. For further relief, raise both arms and place your hands flat on the wall.
Now lean gently forward so as to stretch out both your legs and feet.
Additionally, you can try this lower leg massage:
a) Lie on your back on a bed.
b) Raise your left leg up into the shape of a mountain (like this /\).
c) Place your right leg lower calf muscles on top of the mountain.
d) Move your right leg back and forth across the mountain so as to massage the right leg calf.
e) After a few minute switch sides.
6) Simple Sleep Medications:
As mentioned previously, I found that all my Motor symptoms tended to increase during the night when I am trying to relax and sleep.
Although being loathe to taking more drugs of any sort, I did try taking relatively harmless sleeping aids such as Advil Nighttime or Tylenol Nighttime.
I found this extremely helpful as it not only allowed me to sleep a few more hours per night, but also enabled me to avoid just lying there
in total discomfort due to raging Motor symptoms.
7) Daily Exercise:
Do not be afraid to get some overall exercise to the body during the day. Although every part of your body may be achy/pain,
I found that giving the body regular daily exercise actually helped me sleep better at night.
Following a successful withdrawal, the brain is supposed to slowly heal all by itself.
However, it is very evident that even if you become drug free, withdrawal symptoms may continue for a very long time afterwards (in my case five years so far).
I can only hope that given time, the required healing of the brain will occur as predicted by general public opinion.
It is during this challenging withdrawal phase that I realized that people require the most support and guidance. Hence my attempt to start a local
Vancouver Benzo Support Group (VBSG).
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