New to the forum

Hi,

I have been suffering from Chronic Fatigue Syndrome for the past 9 years.  I was put on Klonopin 6 years ago for insomnia and pain.

This past year my dose was 3mg a day.  I became tolerant/dependent on the Klonopin and became very ill.  I could not taper on my own - nor could my doctors help me so 3 months ago I entered a detox/rehab in-patient facility.  I was there for 31 days and have been off klonopin 106 days.

I still suffer from severe withdrawal symptoms.

Hi piroshka,

Welcome to benzobuddies

I'm so sorry that you are still suffering withdrawals.  It can take some time to recover from benzo w/d..  You must be feeling quite despondent and low.. I hope you will draw some encouragement and comfort from reading the success stories here on the forum.  It's very reassuring to read that people do recover, each in their own time scale and there own way, but they do.. And you will too! It's important to know that recovery can often be a few steps forward and a few back, it's not a linear recovery like most illness , but ultimately the result is the same.  Here is a link to the Success Stories board. http://www.benzobuddies.org/forum/index.php?board=89.0

You might like to ask questions in the Cold Turkey, Detox & Rapid Withdrawal board.  Some of the members there will share a similar experience as you and will be happy to chime in.  Here is a link: http://www.benzobuddies.org/forum/index.php?board=133.0

We do hope that you will feel comforted by joining us here.  Our community is open and friendly and members will be happy to share and include you.  Please post anywhere you wish.

Betsy xxxx

Thank you Betsy for your welcome.

This forum seems so friendly and full of useful information.  I'm happy that I found my way here.

Hello piroshka

Welcome from me too, we are happy to have you here, well done being benzo free

If you need help with anything let us know

Magrita

Thanks for the welcome.

This is "my story with Klonpin" which I posted on the Chronic Fatigue Syndrome website which I am a member of.

MY STORY: KLONOPIN USE AND WITHDRAWAL

 

Klonopin is an anti-seizure medication that is in the Benzodiazepine family of drugs. In addition, its uses include a mood stabilizer, a tranquilizer and a sleep medication.

Patients who suffer from ME/CFS are often prescribed Klonopin to help with their insomnia and with their “neurological wired symptoms”.

Klonpin: How it works

Klonopin is a central nervous system (cns) depressant. It enhances GABA which is a neurotransmitter in the brain and tells neurons to slow down or stop firing. As a consequence, the brain’s output of excitatory neurotransmitters, including norepinephrine, serotonin, acetyl choline and dopamine, is reduced. These neurotransmitters are necessary for normal alertness, memory, muscle tone and co-ordination, emotional responses, endocrine gland secretion, heart rate and blood pressure control.

Klonopin comes with a warning to be used only as a short term treatment. Long term treatment may cause dependency and tolerance for its users.  In fact, researching this drug, I found out that a third of the people taking it long term – meaning six weeks or longer, become dependent/tolerant to it. After 6 months of use this number jumps to 50% of users.

Klonopin, as well as all Benzodiazepine drugs have a very difficult and dangerous withdrawal course.

My story of Klonopin use as an ME/CFS patient:

I have been ill with ME for the past 10 years.  Gradually, my symptoms worsened and I had to stop working and go on disability. I developed severe insomnia and had a sleep study taken in a hospital setting. The results of the study showed that I had many alpha wave intrusions. My doctor said that this is consistent with a CFS diagnosis which shows “neurotoxicity” of the brain. I was told that Klonopin is the most effective treatment for this and that my insomnia needed to be treated in an effectual way because sleep is the most important treatment for this illness.

I started taking Klonopin about 8 years ago. At first it was working well as far as my sleep was concerned.  After a while, I became tolerant to the dose and my doctor increased it in order for it to continue working. This had to be done a number of times in order for it to remain effective.

Six years ago, I started reading about the dangers of Klonopin and Benzodiazepine drugs in general. I refused to increase my dosage which had been at the time 3 mg a night.  Because I had become tolerant to the drug it was not working for me any longer.  My doctor prescribed Ambien for sleep.

I was kept on my Klonopin dose of 3 mg a night because I could not reduce it in a safe way. Throughout the years I had tried at different points to slowly taper off with no success.

 

 

My problem with Klonopin use

This past year has been my worst year yet as far as my ME/CFS is concerned. I had spent most of my year bed bound. I was in constant chronic pain. My headaches were severe and left me non-functional.  I was not sleeping well and it was rare that I could get out of the house.  I became depressed about my situation.

The past few months I had a new symptom of feeling edgy and my blood pressure, which has been low all the years of my illness, had increased to a high level.  I started to look into these symptoms and found that one could suffer from symptoms of withdrawal from Klonopin just by remaining on a current dosage.

By then, besides feeling very edgy, I had become depressed too. I asked my doctor to help me taper off of the Klonopin.  He tried by giving me Viibrid,a new medication which is an SSRI in addition to a 5HT1A receptor partial antagonist. He said that I need to build up my dosage of Viibryd in order to have a “safe” taper of the Klonopin. This didn’t work for me at all. I had a bad reaction to the Viibryd or maybe it was the combination of the Viibryd and Klonopin. I fell into a very dark, deep depression where I became suicidal. This feeling continued even though I had discontinued the Viibryd.

Another doctor tried to help me by prescribing Valium in order to help me withdraw from the Klonopin which backfired on me too. I had a paradox reaction to the  Valium. In lieu of calming me, it increased my anxiety. I had to discontinue its use.

At this point, I felt totally stuck. I was suicidal. I knew that it was caused by the Klonopin but, even great doctors could not help me withdraw from Klonopin.

I now know that I was not alone in this position of no return with Klonopin. There are other patients suffering from ME/CFS who have been on long term Klonopin and found themselves in this same corner and ended their lives! This is not a subject to be taken lightly.

My recovery from Klonopin use

I was fortunate that, with the grace of God, I was given a name of a doctor who specialized in addiction.

My family flew me down to Florida to meet him and he right away put me in a medical detox/rehab facility. I stayed there as an inpatient for 31 days. The first two weeks were sheer torture. They took away my Klonopin and Ambien the first day and substituted it with the medication Tranxene which is an older medication with a longer half life.

My health and blood pressure had to be monitored very closely. I learned there that high blood pressure is a landmark withdrawal symptom of Benzodiazapine withdrawal. I remembered that the past few months I had been suffering from high blood pressure which meant that as I thought, I had been in a state of Klonopin withdrawal all this time.

The detox/rehab facility did a great job monitoring me closely and administrating blood pressure reducing medications as needed. I needed another two weeks for rehabilitation.

Today, two weeks out of the facility, I feel like I have been given a second chance in life.  I feel so much better. The only medication I am on is Trileptal which has no danger of becoming addictive.  Even though I still suffer from some withdrawal symptoms which might continue for another six months to two years, I feel like a new person. I am not bed bound and my constant pain has been alleviated.

My ongoing  withdrawal symptoms from Klonopin

The withdrawal symptoms still persisting include; sweating, nausea, agitation, lack of concentration, sensitivity to sound and touch, pins and needles and numbness.

These will hopefully diminish as time goes on.

Most people will not need such a “fast detox” like I went through. The slower one can taper off these Benzodiazepine medications, the safer it is. I did not have the “luxury” of time at hand. I was on a fast course to death and needed a quick fix to save my life.

I feel compelled to “tell my story” in order to help others and warn them of the very real possible dangers of starting on the road of Klonopin consumption.

I wish someone had warned me before I took my first dose of this dangerous drug.

I posted this about a month ago.  Since then, my withdrawal symptoms have greatly increased.

I now suffer from severe peripheral neuropathy in my hands, arm, legs, lips and tongue.  I'm swollen all over and especially my hands.  My hands are in constant pain and I can hardly move my fingers.

How does one know whether everything they are feeling is due to Benzo withdrawal?

Hi Piroshka,

I am very touched by your story!  Your info about how klonopin works is so clear and helpful to others.  Thank you for posting this.

As far as your severe pain and swelling, only a good neurologist could help you answer that.  I had nerve pain after neck surgery,

which I now know was aggravated by long-term opioid treatment - hyperalgesia.  The further I get into clonazepam/k withdrawal, the

more I think that has been confusing my diagnosis, too.  So I really understand your concerns.  I have seen many doctors and I think it

is safer for you to rule out any other causes.

I really wish you every kindness.

Lizie

Thank you. Lizzie for your reply.

It is good advice to seek out medical consultations.

I went to a neurologist two weeks ago.  He took a nerve conductivity test and it showed nerve damage in each leg.  One nerve in each leg had no reaction at all to the electrical stimulation.  This really concerns me. 

He sent me for an MRI of the brain and neck (since I have been having pain in my neck).  I didn't get the results yet.

It is strange to me that all these problems started manifesting AFTER I stopped taking the Klonopin.  Is it possible that these problems were there before but, the Klonopin was masking the problems?

You raise an interesting question  ......

For me, clonazepam /k has not masked or helped my nerve pain.  I was given it as a muscle relaxer, and two doctors since have

expressed shock that I was prescribed this.  They say it is not typically used for pain and that I 'don't fit the profile'.  It definitely was

not masking symptoms for me - if anything it has been causing them - first through tolerance withdrawal and now through tapering! 

Only time will really prove this, of course.

It will be interesting to see what your MRI reveals.  Do your symptoms fluctuate?

Lizie

My symptoms have been getting progressively worse.  At first, I only had tingling and numbness in my hand and fingers.  Then it progressed to my feet and lips.  A few weeks later the tip of my tongue felt numb and tingling.

Now it's moved to my entire legs and arms.

It's interesting that I see you had neck surgery because I have neck pain too.  Two months ago I had x-rays done of my neck which came back fine.  I have been going for Physical Therapy for my neck since then but, with no improvement.

I will let you know what the MRI shows if anything.

Thanks for your replies.

I just got the results back from my brain MRI.

It shows that I have a small meningioma (benign tumor) near my right ear.  I'm going back to the Neurologist on Friday to discuss this but he said that this could explain my dizziness and my numbness and tingling in my lips and tongue.

What's strange to me is that these symptoms only started since I discontinued the Klonopin.

Is it possible that while I was on Klonopin it was masking these symptoms? 

Have others here found that some medical problems were absent while they were on Benzos and then when they got off it, it suddenly appeared?

Sorry to hear that you have a tumor, but glad that it is benign, small and treatable.

You might get more responses, if you post your question on the 'medications' board.  More people will read it there than on the

'introductions'.

Take care,

Lizie