Cascading Prescriptions, Cascading Symptoms?

Hello Buddies,

I am in the process of beginning to try to share with some of the people in my "real" life just exactly what has been going on in my body during these 22 months since I took my last dose of klonopin.  The following is a document that I originally had written in spring 2010 for an insurance company that was investigating whether I would be a "safe" candidate for a long term care policy.  I wrote this 5 months after I became benzo-free and so have edited a little of it to bring it up to date.  My original hope in composing such a document was that the insurance company would see that a very large portion of the symptoms  I had experienced over that 17 years MIGHT be due to the medications I had been taking, rather than from the diagnosis that had been written down continually on my charts...fibromyalgia.  (When talking to the insurance lady who was in charge of helping my husband and I try to get a policy, she informed me that if I had fibromyalgia...or any sort of autoimmune issues...I would probably not be able to qualify.)  

I know that there is not a way to totally verify whether or not the hypotheses I have proposed below are accurate...but I think there is a very good possibility that many of them are, based upon the symptoms that have left since I have gotten off the medicines.  As I am trying to edit this document, I thought that I would share it again as I feel there may be new buddies out there who may just now be realizing how one medicine can lead to another medicine in order to alleviate the side effects of the original medication.  And often your side effects of each medication might be mistaken as true "illnesses".

Of course, this belongs in "Chewing the Fat", because it is more speculative than objective at this point.  Only time will tell if my hypotheses will turn out to be true.  I would love to hear from any of you who might "identify" with my experience!

Cascading Prescriptions,  Cascading Symptoms?

Written April 13, 2010 by Leena  (edited Sept. 18, 2011)

About 17 years ago, I experienced a strange sensation of numbness/tingling in my face and some other body sensations that were "different".  I went to see my family physician and he sent me to a neurologist to try to determine what was causing these symptoms.  I was put on the drug, xanax, and was told that I had anxiety (even though I didn't feel anxious).  Eventually, after further tests and MRI's could find nothing seriously wrong, this drug was changed to klonopin.  I was not able to tolerate the side effects of xanax. At one point, after seeking a second opinion from another neurologist, I was told that I must have "some sort of benzodiazepine receptor disorder" and I left feeling like I would need to stay on the klonopin because of whatever this disorder might be. The prescribed dosage stayed the same over all the years that the drug was prescribed to me (.5 mg 3x day), though I tried for many of these years to only take .5 mg at night.  This continued for 17 years.

It was after I had been on klonopin for maybe 2 years that I began to experience painful neuropathy in my feet. At that time and for many years after this began, I attributed it to whatever the "neurological deficit" was that I had.  When it became painful enough to warrant pain medication, my primary care doctor began prescribing darvocet.  I was prescribed celexa (not only for pain, but also for a depression I went through in 1994 when our son was diagnosed with Type 1 diabetes). The celexa was later changed to cymbalta, after studies had been done that showed that cymbalta was effective for pain. The antidepressant made my muscles tense and so to combat this muscle tension, I was prescribed soma. I used THIS "cocktail" of medications for many years ... up until the fall of 2008: klonopin, cymbalta, darvocet, and soma. During these years, the pain began to migrate from my feet into my legs. I went to various doctors, and never got a REAL definite diagnosis. Some said "myofascial pain" and some said "fibromyalgia". I didn't really fit the fibro diagnosis because I was not fatigued.

I think it was early in 2008, when the pain was getting harder to control, that my doctor decided to add lyrica into my "cocktail". I could not tolerate the side effects, and so was given neurontin (gabapentin). I kept neurontin as an "on again, off again" medicine ... because it did help sometimes.

I will add that sometime during all the years on these medications, I began to have a really huge problem with migraines ... and so I began to take various triptan medications to fight the migraines.

In summer of 2008, as the pain began to move into other parts of my body, my family doctor decided to have me go to a pain management specialist. He was becoming very concerned at how much pain medicine it was taking for my pain to be bearable.  This began a "new" era in my treatment. In short, during the pain management era, I was given steroidal injections into my spine and neck .. .I was put upon a fentanyl patch, I was changed from darvocet over to norco and from soma over to some different muscle relaxers. They wanted to try lyrica again, which still could not tolerate and so I was kept on neurontin.

In January of 2009, I came down with a diagnosis of shingles on my left leg and was immediately prescribed an anti-viral along with prednisone.  The neurontin became more important during this time as it definitely helped to control the pain caused from the shingles.

I have a painting business, which I had been able to maintain even while not feeling "up to par". In March of 2009, I sustained injuries from an accident involved when a ladder I was working on slipped due to being placed on top of construction paper that was not taped down. I was hospitalized for a week with a broken pelvis and 6 broken ribs. There was no need for surgery. However, I was placed upon a larger fentanyl patch (75 mcg.) and dilaudid, as well as given prescriptions for xanax (which I only used a couple of times due to how depressed it made me feel) and higher doses of klonopin. I remained on these drugs during my recovery, along with zanaflex (a muscle relaxer), and my cymbalta, and imitrex for migraines.  I was also on a Climara Pro patch for hormones, even though I was never tested to see if I needed the extra hormones.  I think this was first prescribed in summer of 2008. (I have since gone off of the Climara ...  January, 2010 ... due to vaginal bleeding).

I knew that I needed to get off of the fentanyl and dilaudid as soon as possible to avoid addiction. I took my last dilaudid on May 26, 2009 ... the fentanyl was VERY hard to wean off of due to withdrawal effects. Plus, I had VERY LITTLE help with the pain management practice in weaning off.  I was finally free of the fentanyl (totally) in July of 2009.

In summer of 2009, I was still in a lot of pain ... and was trying to rely only on cymbalta, neurontin, klonopin, and zanaflex to take care of the pain. Because withdrawal from the fentanyl was so hard, propanolol was prescribed to try to ease that. Other medications tried during this time: topamax (made me bleed vaginally); ultram (did not work); restoril and lunesta for sleep (did not help); celebrex (did not help). My pain doctor did go ahead and prescribe norco for me, but I tried to use it only when absolutely necessary ... as I had just weaned off of fentanyl and dilaudid and didn't want to get involved with opiates again.

In August of 2009, I felt I might be coming down with a UTI and was getting ready to leave on a trip with my husband. My gynecologist had given me a prescription for levaquin earlier in the summer, when I had thought I might be getting a bladder infection. I decided to use the levaquin before leaving on the trip with my husband.  I was unaware of any sort of interaction between benzodiazepines and levaquin.

In September 2009, I kept having the same feelings of withdrawal that I experienced from the heavy opiates. I could not figure out why this would be happening, since adequate time had passed for my opiate withdrawals to be over (I thought). While watching an episode of House on TV, I heard the term “tolerance withdrawal” for the first time, and I began to do some research into the other meds that I had been on consistently, which were the cymbalta and the klonopin.

It was while researching the klonopin that I came to understand what is meant by the term "tolerance withdrawal".  I learned that withdrawal symptoms can begin with benzodiazepines when you do not continually increase your dosage to keep up with the severity of symptoms. I had tried to remain within the . 5mg dosage, 1-3x daily, for all the years up until my accident in spring of 09. ( I used more of it during my time of recovery.)

Here is what has happened since I made this discovery:

1)  I decided that based upon my research, primarily from a manual by British psychiatrist and benzo withdrawal expert, Dr. Heather Ashton in England, and from various benzodiazepine withdrawal/recovery sites .. .I needed to get off of the klonopin.  I discovered that it is a medication that is only intended for short term use. I looked up the symptoms of tolerance withdrawal. .. among the many symptoms were muscle and nerve pain. Because the pain in my feet/legs/ and subsequently my whole body began after I started taking klonopin, I believe that this one medication MAY have led me to take a cascade of other medicines to take care of the cascade of symptoms I was having. I took my last dose of klonopin on Nov. 13, 2009. Shortly after this, the pain in my feet began to dissipate.  It was the first pain to come after beginning to take klonopin...and it was the first one to start to leave.  For most of the past year, this pain in my feet has been gone.  I have had occasional recurrences, but because they do not last I feel that there is strong reason to believe that this is a withdrawal symptom and NOT from an illness.

2)  Without the klonopin to keep my muscles from tensing up from taking cymbalta, I also withdrew off of the cymbalta. My last dose of cymbalta was Dee. 15, 2009.

3)  Withdrawal from the klonopin is harder than anything I have ever been through.  My taper (which took place over the period of a month)  was accompanied by massive withdrawal symptoms. At 22 months off, I am still experiencing some of them,   For some people, it takes 2 years or even more for the central nervous system to take over doing what it had ceased to be able to do due to the effects on GABA by the benzodiazepine.

4)  I had to also withdraw from the neurontin, because it affects the GABA receptors and perpetuates the withdrawal process from benzodiazepines.  I do not know how this has contributed to the pain from the benzo withdrawal, but it surely has had some effect.

5)  I believe that I may have been susceptible to shingles, not only because of the incredible stress on my body by all of these medications, but maybe especially because of having all the steroid injections (which weaken the immune system).  I do feel that my left leg still suffers from lingering effects from the shingles.

6)  As I got off of all these medications, I saw that THESE were the cause of the intense migraines I had been having for years.  At this edit (22 months off) I experience NO headaches that compare with the headaches while on the meds and I am taking fewer and fewer of my imitrex, which I take mainly in a preventative measure.

7)  About the levaquin, I have found (after the fact) that it is a very controversial antibiotic and in is highly contraindicated in people going through withdrawals from benzodiazepines.  In addition to the neurological symptoms I may be experiencing from withdrawals, I may also be fighting symptoms from having taken this drug. In both cases, the only thing that will heal them is time.

All I can say is wow!  Leena, this is an amazing post, and thank you for sharing! 

Annie

Thanks Leena. You post some very interesting and good things.

K.

Hello Annie and Keryn...thank you.  I just hope that communicating my experience might be helpful to someone else here at BBs who is wondering, "Is this an illness?"  or "Is this from the medicine?"  I realize it doesn't have to be one or the other...it could be both!

One other "theory" is that withdrawal might "set off" a reaction in some bodies that actually might become an illness.  It would seem that a really severe withdrawal experience would be capable of doing this.  In my case, I wonder if I really might have developed psoriatic arthritis (which is autoimmune) as a result of my body being so devastated by the drugs and withdrawal from them?  I am just waiting to see on this one...

~Leena

Leena,

I was put on Klonopin 18 years ago for Chronic Fatigue Syndrome (which I really did have).  But I am fairly certain now that the CFS went away years ago, and the symtoms I continued to have were from Klonopin.  Been off K for four months now and though I have withdrawal symptoms, I don't feel "ill" anymore.

Moby

Moby...that is so encouraging for me to hear!  Thank you so much for telling me about your situation.  I will try to take some time to look at your previous posts so I can know more about your story.  I am so glad that it looks like when you are finished with your withdrawal time, you will be WELL!  There are several of us who have been on klonopin for about the same amount of time, and we need to hear good news from each other whenever there is some to share!

~Leena

Leena, my story is that nearly 20 years ago, I suffered from PTSD after my mother's suicide.  CFS followed after that... I went on Klonopin, then Lexapro, then Ambien.  I averaged .75 mgs of Klonopin per night, but sometimes as much as 1.25 mgs.  I took Ambien (10 mgs) for seven years.  I am still on 10 mgs. of Lexapro.

I tapered off K starting in May and took my last dose in July.  I have been off of Ambien for almost two weeks.

When I was on K I suffered from cog fog, emotional blunting, lethargy, mild depression, crankiness and terrible early morning fatigue.  It was like a veil covered my brain, and I had this constant feeling that my life wasn't going to end well.  Now I feel clear headed, happy and alive.  I haven't felt this good in almost 20 years...I still have some healing to do from my withdrawal, but I can handle it.

I wish you a speedy recovery.   

Hello Moby,

Wow.  You have been through a lot...but you are coming through the withdrawal from both klonopin and ambien so well! It is encouraging to hear you say, "Now I feel clear headed, happy, and alive."  I am sure that your positivity has been a strong ally.  Thank you for taking the time to tell me your story.  I will be watching for you on the forum.

~Leena

Buddies...I am bumping this thread up, after spending a while editing it today.  Since there are so many new buddies here, I am thinking that this might be helpful to some of you wondering how much of what you are experiencing  (with your symptoms) might be medication related.

~Leena

Leena,

You are an incredibly brave person to have gone through all this and still be so positive.  Just curious, what was the response from the Insurance Company?  Your hypothesis may indeed be correct.  Many people on this site report some type of body ache and pain.  I was on Xanax for 12 years. I began tapering in December of 2010.  I c/o to valium in May and I am 9 weeks away from finishing my taper.  The whole time I have been tapering, I've been waiting to experience some sort of body pain or discomfort.  From all the posts and threads i've read, this just seemed to be the norm.  But to this day I haven't experienced it at all.  I am wondering if body aches and pains are only related to Klonopin users?  I don't know what makes my case so different.  But if so many people are experiencing pain then there must be a correlation.  I think that benzos affect more the just the gaba receptor sites.  There must be another part of the brain that controls pain that they effect.  There is another thread here that brings a similar hypothesis that benzos in fact cause people to experience fibro like symptoms.

I hope you find the answers you are looking for and I wish you the best in your healing.

Christopher

Hi Christopher,

Thank you for your kind words...I am not sure how brave I have been through this experience This has been the hardest experience of my life but day by day I have been given strength for the battle!

The insurance company turned me down.  I guess I wasn't surprised.  I am sure that FIBROMYALGIA was written on so many charts that they could not ignore it.

From what I have read during my almost 2 years here at BenzoBuddies, it seems that the folks who were on klonopin tend towards having a great deal of muscle and/or nerve pain.  I am not sure what the unique property of klonopin is that has doctors prescribe it as a muscle relaxer, but that is definitely the effect it had on me.  I am sure it is this fact that has caused my primary withdrawal symptoms to be physical ones.

I am VERY glad and thankful for you that these symptoms have not been a part of your repertoire! I think you were extremely wise to do a crossover to valium from the xanax.  I often wish I had made the decision to cross over.  It sounds like you are doing incredibly well and I hope that you continue to avoid ALL body pain and discomfort. 

I have read the thread you mentioned here, and have seen many other buddies here that have been diagnosed with fibromyalgia (when it may, in fact, have been tolerance withdrawal).  I hope that I am not just living in "denial" about the fibro diagnosis...but I do see reason to keep hope that the pain has been from tolerance withdrawal and "regular" withdrawal.  And since I was on so many meds for so long...who knows how each one of these truly affects an individual body?  I am sure they (and especially the klonopin) have done things to my system that no doctor could predict.

Thank you so much for your comments, Christopher. 

~Leena