Annej: Off long term SNRI's since July 2011

[annej]

Hi,

 

I would like to introduce myself. My name is Annej and I am here to give support as well as receive.

 

I was first prescribed Effexor XR back in 2000 for a situational life event. I went to my GP for a routine physical and walked out with a sample of Effexor XR. I was moderately distressed at the time, although in retrospect, my distress would never come close to what happened to me in the next several years after being on multiple medications for a diagnosis I never had.

 

I took the first 37.5 mg. of Effexor XR and had my first panic attack that very night. I stopped the medication, told my GP who then said that the panic attack was a "normal, start-up side effect" and prescribed 1 mg. of Klonopin. I was never informed about the withdrawal syndrome or dependency potential of either drugs. After the first dose of Klonopin, I never had any further panic attacks, but I was depressed and I sought help from a pdoc. My dose of Effexor XR escalated rapidly to 225 mg.

 

I never had a feeling that the drug(s) worked. I knew I was dependent on Klonopin after forgetting to take it one night and going through extreme withdrawals. In 2001, I tried to taper off of Effexor and could never seem to get below 75 mg. Life had to continue - I had a family to take care of and a job to perform so after 5 or 6 attempts, I simply gave up. I continued to function fairly well and had an outstanding career and a great family life.

 

By 2007, I started feeling depressed again. I had recently started working nights and I went to go see another pdoc. She said I had "shift work disorder" and prescribed Provigil. Within 24 hours of taking Provigil, I became euphoric or manic-like and engaged in a very damaging shopping spree. As the consequences of my behavior started to sink in, I became very, very depressed, could not figure out how I had wrecked my financial life and was convinced I must be very, very ill. I saw another pdoc who said I had "Bipolar Disorder" and put me in the hospital. I was discharged on 5 medications and the Provigil was never questioned or discontinued. I just got sicker and sicker. I stopped being able to work in October 2007.

 

By 2009, after my husband passed away from cancer, I was grief-stricken, on too many medications, and simply could no longer function in this condition. I was hospitalized twice in quick succession from what I now know to be side effects from all the drugs and I was placed on more and more drugs, this time, I was put on high doses of Adderrall. I just continued to get more and more ill and my family became more and more devastated by my "mental illness". Their once beautiful, intelligent, functional daughter was disintegrating before their very eyes.

 

By 2010, I was so ill that I was awarded Social Security Disability (SSDI). Any hopes of returning to work had been squashed and I continued to just get more and more ill. Dosages of medications were increased and I was pulled off medications quickly and others were initiated just as quickly. I have been placed on over 20 different medications of all classifications except for MAOI's. The only reason I was not on an MAOI was the simple fact that I was on an SNRI and could not get off of it. I was very close to undergoing ECT treatments. To this day, I am thankful that my doctor stopped short of doing this.

 

Somehow, the Universe intervened on my behalf and gave me a moment of lucidity. I became very clear that the drugs, one of them, or all of them in concert, had made me very ill. Fortunately, my family started to believe the possibility that this was true and they took me on 3 different second opinions. One pdoc that I saw told my family and I, and I quote, "you are screwed". He went on to say that he would not help me get off the meds because he had not been the doctor to put me on them. He told me that the SNRI and the benzo were the "least of my problems" and that I should NOT try to come off of them because of the withdrawal syndrome. This information made me all the more determined to get off of the drugs.

 

In April 2011, I had to be hospitalized for my own safety. I was tormented by the fact that I was stuck on meds that were making me ill and I could not find any help or information in which to get off safely. The one saving grace in all of this was the fact that the same pdoc who told me that I was "screwed" had sent a letter to my treating pdoc and told him that it appeared that I was "extremely sensitive" to stimulants and recommended that I be taken off of them. My pdoc happened to receive this letter on the second day of me being in the hospital. On this day, my pdoc's attitude of caring and compassion seemed to have changed and without telling me why, he took me off of the following within 24 hours: Adderrall, Lunesta, Seroquel, and Lithium. These were all discontinued in one day without any tapering whatsover. In the same 24 hour period, Pristiq was reduced by 50%, from 100 mg. to 50 mg. and Klonopin reduced by 50% from 2 mg. to 1 mg. The solemn news was that I was a "very, very sick, ill woman" and would have to go on Depakote. I had no resources to advocate on my own behalf and figured that I could just take the Depakote while in the hospital and stop taking it when I got home. I pretended to be in agreement.

 

I was then due to be discharged after 8 days, and I asked instead to be discharged that Sunday instead of the following day. My pdoc said he did not recommend going home that day and when I asked why, he said, "So I can make sure that you sleep tonight". I had not had any trouble sleeping all during this hospitalization. It occurred to me that he really did not want to write discharge orders on a Sunday. I can't say I blame him, but I wanted to go home. He really did not have an argument that had any basis in logic and he acquiesed and let me go home that day. This was the moment when I knew that my own doctor was capable of not telling me the truth. My logic was that if he was willing to lie to me over the reasons why I should stay in the hospital for another day, then he was capable of telling far more egregious lies. I knew then that I had been duped for the last 3 years. Perhaps, what is more accurate then being "duped" is that my pdoc had totally bought into the psychiatric dogma and could not see for himself of the possibility that all the meds he had been prescribing were cumulative in nature and had made his patient very ill.

 

I got home on June 1 and was estatic that I was off of so many meds and "only" on 50 mg. of Pristiq and 1 mg. of Klonopin. Just typing this sentence makes me so very sad that I had absolutely no idea of what was going to happen to me. My pdoc said that I could cut the Pristiq in half in order to get off of it. I questioned this as it was a time-release tablet and he said "don't worry". I cut the Pristiq in half and as you can imagine, I became extremely ill for several hours. This is when I discovered that my pdoc either had no idea of how to get me off of Pristiq or he simply did not care.

 

Within 4 days of being discharged on this 7th hospitalization, I became very, very ill from withdrawal syndrome from Pristiq and Klonopin. I struggled, I was so very ill that I could not care for myself. I was on the phone every single day to my pdoc who finally admitted that my symptoms were because I was in withdrawal. He said, "I am so sorry, but you are between a rock and a hard place. I cannot increase the medication and the only way out of this is to get off the meds". To his credit, my pdoc successfully crossed me over from Pristiq to Lexapro.

 

When I got down from 20 mg. of Lexapro to 15 mg. of Lexapro and still at the 1 mg. of Klonopin, I started having out of the blue SI. I needed to be hospitalized and my family would not take me back to the same hospital or doctor. They took me to a large teaching hospital where my family gave the attending a 8 page history of all meds tried and failed and my reactions. The bipolar diagnosis was thrown out and I was diagnosed with "Substance Induced Mood Disorder" (Legally prescribed amphetamines) and I was told to never take a another stimulant again. While in the hospital, the attending told me that I would not have any problem getting off the Lexapro and reduced me from 20 mg. to 10 mg. I got physically ill with withdrawal symptoms. The attending was actually angry with me in rounds and told me that any withdrawal from 20 mg. to 10 mg. was "impossible". However, she increased the dose to 15 mg. and I felt so much better. The Klonopin was reduced from 1 mg. to 0.5 mg. and I did OK with that with the exception of insomnia. I still had very little idea of what was yet to come.

 

My family needed a break from me and I needed a break from them. Let's call it one of mutual respect. I went to a private, self-pay "psychological care and healing" big bucks type of place (there went my last savings) and none of the psychologists, therapists or psychiatrists told me that I was experiencing withdrawal. The psychiatrist there was fairly knowledgeable and cut my dose of Lexapro by 2.5 mg. each week which I tolerated very, very well. I have been off of Lexapro since July 18, 2011. Unfortunately, the psychiatrist then went to work on the Klonopin and my house of cards folded. After one week of tapering the Klonopin from 0.5 mg. to 0.375 mg. I ended up with such severe insomnia and became dehydrated. I had to go to a local ER for IV fluids. I ended up forfeiting almost $20,000 because I had to leave 2 weeks early to come home because I was in so much distress. I ended up updosing the Klonopin back to 0.5 mg. and waited it out for about 2 months in order to stabilize. In September, I found an online benzo support group and started a slow reduction of the Klonopin. I am now at 0.158 mg. of Klonopin and I believe that although this is very, very hard work, that under the horrendous circumstances of the last 3 years, that I am definitely a success story.

 

I believe that coming off of psychotropics is a personal decision and one that needs to be carefully weighed. Having a plan prior to tapering, tapering one medication at a time slowly, having professional support as well as family support, all go a long way to ensuring success. What happened to me and the way that all these meds were abruptly discontinued was, if you will, almost criminal. It certainly was extremely dangerous, and absolutely inhumane.

 

I am here to tell anyone who has a strong desire to get off of medication that it can be done. That a slow taper is the best type of taper. I look forward to meeting everyone and getting to know your stories. Hugs, Annej

[Karma]

Hi Annej and welcome.

 

I'm new here, too. Yours is a truly horrendous story! I'm happy for you that you are off of SNRIs, but I'm so sorry for all of the trauma you went through on the journey.

 

I just find it very hard to accept that doctors are allowed to prescribe all of these meds and know nothing about getting us off of them. I realize this is the case, but it just seems that our medical establishment is so very broken.

 

Welcome to the forum and I look forward to getting to know you better.

 

Love and light, Karma

[annej]

Dear Karma,

 

Thank you for welcoming me to this forum. It's nice to be welcome!

 

I too, look forward to getting to know you!

 

Yes, the US system of "mental health" (some would call it "mental death") is in serious need of an overhaul.

 

I am not sure as to how this will be accomplished or if it will be in my lifetime or my children's.

 

My energies are spent staying equally close to maintstream psychiatry and those who wish psychiatric reform. Even though my experience has been traumatizing and has caused great harm to my family and I, I do not consider myself "anti-psychiatry". I believe that serious mental distress exists and that our society needs to find a way to support those who are experiencing mental distress.

 

Had I been supported during this time, instead of being unmercilessly drugged out of my head, I believe I would have recovered quite nicely and probably a whole lot more quickly. As it stands now, I am fairly sure that I have a great deal of trauma to process - all caused by the very people charged with the responsibility to help.

 

I have every faith that I will make a 100% full recovery. I believe in neuroplasticity and the body's ability to heal. I believe that in the absence of tardive dyskenisia caused by neuroleptics, that every single person will heal 100% from withdrawal syndrome given enough time and support.

 

Looking forward to seeing more of you around the forum. Hugs, annej

[Altostrata]

Oh my gosh, Annej, that is an amazing story.

 

I am so happy you are doing better and seeing an end to all this drug-caused misery.

 

Welcome to our community and thank you for helping others with your story.

 

How are you feeling now?

[annej]

Oh my gosh, Annej, that is an amazing story.

 

I am so happy you are doing better and seeing an end to all this drug-caused misery.

 

Welcome to our community and thank you for helping others with your story.

 

How are you feeling now?

 

Hi Altostrata,

 

Thank you for the welcome!

 

I feel that I am doing remarkably well considering the amount of trauma, stigma, and all around suffering caused to my family and I from ever taking psychotropic medications in the first place.

 

If anything, this journey has made me a much stronger person because I know that if I can survive and even begin to thrive a bit after all that has happened, that not much else that happens in this life can ever affect me as negatively as this.

 

I want to tell everyone that I thought I would never be able to recover from the damage caused by psychotropics. That I would never, ever be able to get off of Effexor, Pristiq, Cymbalta, Lexapro. My pdoc-led taper was ridiculously and dangerously rapid, but I made it.

 

I am an ordinary person who faced extraordinary circumstances and did extraordinarily well. My journey is not over until I have completed my withdrawal from benzodiazepines and have healed 100%, but I know that I will heal 100%.

 

If I can get off of Effexor, Pristiq, Cymbalta, Lexapro after 7 years of purgatory and 5 years of actual hell, then I believe with all of my heart, that anyone can do the same.

 

We all have the capability to do the thing that feels the most impossible. We do this by taking it one minute, one day at a time and always remembering that any withdrawal symptoms that we feel are "just the drug" and will pass in time.

 

And when we are able, we offer our experience, strength, and hope to those who suffer.

 

Each and every one of you will heal, 100% heal. It may take time, a lot of time, but please know that you will heal.

 

Hugs, annej

[Guest damnnardil]

OMG. I hate to say this but it helped me to hear a story like yours thinking that mine is the worst. Mine is peanuts compared to yours and I have been to hell and back many times myself. I have so much empathy for you because although I have not gotten close to what you've gone through, I have gone through allot, just for the simple fact that I was once an overly confident, cocky, intelligent, care free, easy going, empathetc guy. And when I went down the psychiatric road, it slowly turned me into an angry, depressed baby that cried at the drop of a hat and still do and my confidence and self esteem would go down to zero 80% of the time and I have been battling poision for years regardless of the fact that I found out allot sooner than you did that psychiatrists are the devil themselves and I have every book on weaning and the dangers of any and all drugs but I'm not out of the woods yet but I must tell you truthfully that my problems are nothing compared to yours. Would love to chat with you more and share. You have been through hell and you are alive to talk about it. You are definitely very remarkable and a very strong woman! Much stronger than myself. John

[Altostrata]

annej, you mentioned elsewhere that you also tried Prozac and it didn't work to help you get off the Effexor?

 

Can you give more detail about that?

[annej]

annej, you mentioned elsewhere that you also tried Prozac and it didn't work to help you get off the Effexor?

 

Can you give more detail about that?

 

Hi Altostrata,

 

My last attempt at getting off of Effexor was several years ago. My pdoc at that time had me do a slow, excruciating taper from 225 mg. to 37.5 mg. I was extremely debilitated once I hit 37.5 mg. My biggest symptoms were extreme vertigo and vomiting along with the psychological issues.

 

I recall being at 37.5 mg. for about 2 weeks and then I stopped Effexor and started on Prozac at 20 mg. The plan was to go to 10 mg. of Prozac for 1 additional week. I think I made it for about 1 week on Prozac 20 mg and then I folded and reinstated. My experience of Prozac was if I had done a cold turkey off the Effexor. I recall feeling so depressed about the length of time I had been tapering and my perceptions that I would never get off of Effexor.

 

As it turns out, I think I needed a different strategy and a different mindset. annej

[Altostrata]

Well, sometimes the Prozac bridge works and sometimes not. Maybe if you had taken it with Effexor for a week, and then dropped the Effexor. But there is no way to tell if it would have worked for you under any circumstances.

 

Since you've been off all the drugs since July, what's your withdrawal symptom pattern been? How have the symptoms changed? This is something everyone wants to know, how these things resolve.

[Crocus]

Annej;

 

Thank you so much for sharing your story and giving so much hope to those of us who are trying to taper off of psych meds. I may have not understood right - did Lexapro finally enable you to get off of the Effexor?

 

I am on 31.5 mg and in February it will be a year since beginning the taper from 150 mg. This last part has gotten increasingly difficult and I the Prozac cross-taper I was just put on does not seem to be helping (though it may not have been enough time).

 

I apologize to put my stuff on your thread, I just really hope to understand what you feel was key in your getting off of Effexor.

 

Thank you so much for posting here and I am honored to "meet" someone who has gotten through the nightmare that you have and are still standing. Crocus

[annej]

Annej;

 

Thank you so much for sharing your story and giving so much hope to those of us who are trying to taper off of psych meds. I may have not understood right - did Lexapro finally enable you to get off of the Effexor?

 

I am on 31.5 mg and in February it will be a year since beginning the taper from 150 mg. This last part has gotten increasingly difficult and I the Prozac cross-taper I was just put on does not seem to be helping (though it may not have been enough time).

 

I apologize to put my stuff on your thread, I just really hope to understand what you feel was key in your getting off of Effexor.

 

Thank you so much for posting here and I am honored to "meet" someone who has gotten through the nightmare that you have and are still standing. Crocus

 

Dear Crocus,

 

Congratulations on your taper! You have made incredible progress!!

 

This thread is for everyone and please feel free to join the conversation.

 

I was on Effexor from 2000 to 2010 and then on Pristiq from 2010 to June 2011. As you may know, Pristiq is a "me too" drug structurally similar to Effexor. I was unable to taper from Effexor with or without Prozac and unable to taper directly from Pristiq. My withdrawal symptoms were simply intolerable despite trying to taper from every conceivable angle.

 

On April 27, I began my taper and subsequent cross-over by reducing Pristiq from 100 mg to 50 mg. I got pretty ill. I had to tough it out for about 7 or 8 days, and then my doctor added on 10 mg of Lexapro to the 50 mg. of Pristiq. I had great relief within aboug 24 hours. I then increased the Lexapro to 20 mg in preparation of discontinuing the Pristiq. After staying at 20 mg. of Lexapro and 50 mg. of Pristiq for another week, I then discontinued Pristiq.

 

I had about 4 or more very bumpy days after I discontinued Pristiq. During this time period, I needed a lot of family support and reassurance due to mood lability. The family support made this transitional time tolerable and safe. Within one week, I was well stabilized on Lexapro and all withdrawal symptoms vanished.

 

I remained on Lexapro for a few more weeks and then started tapering at about 2.5 mg. per week.

 

With each cut I would experience about 24 to 48 hours of very manageable vertigo and the "whoosing" sensation when I turned my head. Other than that it was very, very tolerable.

 

When I reached 2.5 mg, I remained on this dose for another week and then I jumped on July 18. After that, I experienced a few days of "whoosing" sensation when I turned my head and some mild vertigo which completely resolved.

 

I have discontinued 5 meds since April 27 and I have saved the best for last. On October 1, I resumed my benzo taper and am hopeful that I will be off of benzos sometime in February of next year. Tapering off of Klonopin has been significantly challenging as my w/d symptoms have been severe at times. I am hopeful of a complete recovery!

 

Hugs, annej

[Rhiannon]

Hi Annej!

 

I absolutely agree with you when you say: "I believe that although this is very, very hard work, that under the horrendous circumstances of the last 3 years, that I am definitely a success story."

 

You are!

 

I was also disabled by psychiatric medications that were mostly given to me to treat side effects of other psych medications that I should never have been given in the first place. I lost 20 years of my life and my health has been ruined, and I lost my life savings and my house and pretty much everything you can think of. Fortunately I'm now rebuilding my life and slowly tapering off all the meds while working full time. (I came very close to going on SSI disability too--began the application process).

 

If you haven't yet, I highly recommend you read Anatomy of an Epidemic by Robert Whitaker. I think you would be really glad you did.

 

Welcome to the board. Your story is encouraging and inspiring. Thanks for sharing it.

 

 

--Rhiannon

[annej]

Hi Rhiannon,

 

Thank you so much for stopping by. I very much appreciate your support and encouragement.

 

Hugs, annej

[Nadia]

Wow, Annej... thanks for sharing. I'm sorry for everything you've been through and I really admire your courage. I wish you lots of healing and happiness.

[bruno2016]

Thank you for your story. I see you have suffered a lot and wish you the best of luck. I have been off of AD for two months now after being on them for nearly 8 years. Its a pretty hard struggle and I have done several things that have helped: transcranial electrical therapy, neurofeedback, nutrion (raw, organic food), orthomolecular medicine, exercise, meditation, talk therapy, and self help books. I find the power of the mind to be very amazing and I believe our mind is our biggest enemy if it is not our best friend.

 

I am not sure what the others here think about orthomolecular medicine, but I believe that some of us do in fact have biochemical problems that cause our suffering and these problems can be corrected with nurtrients. I would like to request that you look into orthomolecular medicine and also make certain you get a hormone panel done. There can be many causes as to why one would suffer and in my experience the drugs made things worse. I had pretty bad anxiety before drugs- after drugs, worse anxiety, severe depression, anhedonia, etc. I am getting better though. I wish you luck and am glad you are here with us!

[Altostrata]

Zepp, there is no evidence whatsoever that ordinary depression is caused by a biochemical imbalance.

 

This would be an old wives' tale except it was started by pharmaceutical companies with help from psychiatry. Psychiatrists now disavow the "chemical imbalance" theory.

 

Now, nutrients can help fix other problems and might improve general health, and this can help a person feel better.

 

I have reservations about the massive doses of vitamins and supplements recommended by orthomolecular practice. This can make people whose nervous systems have been sensitized by withdrawal very sick. I think you found some of your supplements made you feel worse?

 

If you want to talk about which ones made you feel worse and which made you feel better, please open a topic in the Symptoms and What Helps section.

[spectio]

Hi, annej, what a tri ump for you surviving such a terrible history. You are an inspiration. Can you tell us if you're having any withdrawal symptoms at this point. All of us in the trenches really want to know. I finished withdrawal in September and still have awful symptoms. Like alto asked, what sort of pattern have you seen,if any, as the days go by. We all are gardeners of hope and need some reassurance from those like you who have been there. Thanks, annej

[bruno2016]

Zepp, there is no evidence whatsoever that ordinary depression is caused by a biochemical imbalance.

 

This would be an old wives' tale except it was started by pharmaceutical companies with help from psychiatry. Psychiatrists now disavow the "chemical imbalance" theory.

 

Now, nutrients can help fix other problems and might improve general health, and this can help a person feel better.

 

I have reservations about the massive doses of vitamins and supplements recommended by orthomolecular practice. This can make people whose nervous systems have been sensitized by withdrawal very sick. I think you found some of your supplements made you feel worse?

 

If you want to talk about which ones made you feel worse and which made you feel better, please open a topic in the Symptoms and What Helps section.

 

I have read a lot about the work of Abram Hoffer, Linus Pauling, Carl Pfieffer, etc and I believe their work has shown that at least some people have some abnormal chemistry that responds well to nutrients. For example they identified a unique substance in the urine of schizophrenics which they later called pyroluria and it is a marker that has been used to help treat many folks. Same thing with someone who has high histamine levels; once the histamine is brought down, their symptoms go away. I am not necessarily saying that there is a "chemical imbalance" or a "brain disease", but I do believe that chemistry plays a factor in someone who is experiencing delusions, crushing depression, paranoia, etc. I mean there has got to be something going on in the body, these are not just thought disorders that are all in the mind. Perhaps our symptoms could be result of a food allergy, a chemical sensitivity, or whatever, but I believe our suffering has a root cause whether it is psychological, metabolic, biochemical, etc.

[Barbarannamated]

Zepp ~

I agree that there are an infinite number of physical causes for what is diagnosed as mental disorders ~metabolic/genetic alterations/vitamin & mineral levels/sleep disorders/infection etc

 

The difference between the "chemical imbalance theory" of mood disorders treated in psychiatry is that nothing is measureable and no normal levels of any neurotransmitters have ever been established as I'm sure you know •

I look at this from an endocrine point of view and ask docs if they would look at a patient who is lethargic and slightly overweight and prescribe thyroid hormone for life without doing labwork • I realize that T3 is sometimes used for depression and weight loss but most docs still check levels occasionally •

To throw a hormone at an intricate system of feedback loops while not monitoring the entire system is known to be dangerous but docs are doing this every day with psych drugs •

I believe we must ban the phrase "chemical imbalance" as it is used in psychiatry because it is being picked up by nutrition product companies in selling their supplements and has become a fallacy accepted as fact • it's a slippery slope

 

Again I do agree with your point • we must be very careful with the rhetoric and err on the side of caution

*I'm a tad passionate about this because I bought into it for so long without questioning the obvious ~dont mean to sound attacking *

[annej]

Hi, annej, what a tri ump for you surviving such a terrible history. You are an inspiration. Can you tell us if you're having any withdrawal symptoms at this point. All of us in the trenches really want to know. I finished withdrawal in September and still have awful symptoms. Like alto asked, what sort of pattern have you seen,if any, as the days go by. We all are gardeners of hope and need some reassurance from those like you who have been there. Thanks, annej

 

Hi spectio,

 

I believe that I am 100% entirely healed from withdrawal from Effexor/Pristiq/Lexapro.

 

I had my share of w/d symptoms and some rough points from April to September. I had one month of respite from withdrawal symptoms at which time I resumed tapering of Klonopin on October 1. I have been struggling with the benzo w/d since then.

 

People ask me how I am able to differentiate SSRI/SNRI w/d and benzo w/d. My w/d symptoms with Effexor/Pristiq/Lexapro were vertigo, nausea, brain "whoosing", brain zaps, vivid dreaming, and a bizarre rapid mood change with out-of-the-blue SI.

 

My w/d symptoms with Klonopin are insomnia, tinnitus, blurred vision, muscle spasms, severe fatigue, agoraphobia, "body anxiety", rapid heartrate, incessant rumination/obsessive/intrusive thoughts, existential doubt (the worst symptom of all), depersonalization/derealization, paresthesias, cog fog, and feeling flu-like several times each day. I will complete my taper in February of 2012 and then I will go through acute withdrawals. I will get through this one day or one hour at a time.

 

I think the thing that was most helpful to me when I was going through SNRI/SSRI w/d was to distract myself constantly from my symptoms and to not let other people's symptoms influence my recovery. I knew that I had to get off the drugs and I just accepted that it was going to take time.

 

The human body is magnificent in its ability to heal itself. You will heal. I will heal. Be gentle and kind to yourself, eat well, and limit the amount of time spent on the Internet. Hugs, KL

[Altostrata]

People ask me how I am able to differentiate SSRI/SNRI w/d and benzo w/d. My w/d symptoms with Effexor/Pristiq/Lexapro were vertigo, nausea, brain "whoosing", brain zaps, vivid dreaming, and a bizarre rapid mood change with out-of-the-blue SI.

This is very interesting. I have a working theory that it is the out-of-the-blue waves of symptoms (or anxiety and "black holes") that differentiates withdrawal syndrome from relapse.

[Nadia]

I have read a lot about the work of Abram Hoffer, Linus Pauling, Carl Pfieffer, etc and I believe their work has shown that at least some people have some abnormal chemistry that responds well to nutrients. For example they identified a unique substance in the urine of schizophrenics which they later called pyroluria and it is a marker that has been used to help treat many folks. Same thing with someone who has high histamine levels; once the histamine is brought down, their symptoms go away. I am not necessarily saying that there is a "chemical imbalance" or a "brain disease", but I do believe that chemistry plays a factor in someone who is experiencing delusions, crushing depression, paranoia, etc. I mean there has got to be something going on in the body, these are not just thought disorders that are all in the mind. Perhaps our symptoms could be result of a food allergy, a chemical sensitivity, or whatever, but I believe our suffering has a root cause whether it is psychological, metabolic, biochemical, etc.

 

I totally agree... and I do think different people have different levels of neurotransmitters and that neurotransmitters have an effect on mood (in conjunction with a whole lot of other factors). That said, I think Barbara's response explains perfectly why the term "chemical imbalance" is inadequate. Also, brain chemistry is such an interconnected web of dependencies that it is foolish to mess with it with drugs that are so devastatingly poorly tested and understood.

[Altostrata]

Neurotransmitters affect mood and so do all the other hormones in the body. There's nothing special about the big 4 neurotransmitters except that pharma chose to focus on them for research.

 

It stands to reason that anything you do to change the way the body functions, including taking whopping doses of vitamins, is going to affect the whole shebang. Sometimes the effect lifts mood, sometimes it makes you feel manic, and sometimes it makes you throw up.

[bruno2016]

Neurotransmitters affect mood and so do all the other hormones in the body. There's nothing special about the big 4 neurotransmitters except that pharma chose to focus on them for research.

 

It stands to reason that anything you do to change the way the body functions, including taking whopping doses of vitamins, is going to affect the whole shebang. Sometimes the effect lifts mood, sometimes it makes you feel manic, and sometimes it makes you throw up.

 

***it also stands to reason that if there is an underlying problem which can be corrected with "whopping doses of vitamins" (and minerals and amino acids etc) then this is most definitely a viable solution. No doubt that the human being is a very complicated organism that can be easily thrown out of homeostasis but, at the same time, every life form needs a certain amount of nutrients to function properly and if these nutrients do not make it to their destination then problems occur.

[annej]

Please read my Intro for background. See link.

 

Short version: In retrospect did a rapid benzo taper much too quickly upon the heels of being c/t'd off of many drugs. Started on REMERON for insomnia related to benzo withdrawal. THE WORST DECISION WAS TO START THE REMERON. MAJOR SIDE EFFECTS DID NOT APPEAR FOR SEVERAL WEEKS. Rapid taper off of Remeron after being on it for only 2.5 months - BENZO WITHDRAWAL GOT WORSE (24/7 TERROR, COMPLETE INABILITY TO SLEEP). I think the REMERON initially masked severe benzo withdrawal and absolute necessity to rapid taper it (my pdoc wanted me to cold turkey it!) unleashed the true benzo withdrawal.

 

4 to 6 weeks after coming off of Klonopin (off January 26, 2012) developed SEVERE akathisia (so bad ending my life became my new reality) and Tardive Dyskinesia (involuntary lip smacking, lip puckering, rocking, respiratory "grunting". Was forced to reinstate Klonopin after 90+ days off of K. Did not reinstate earlier because of many horror stories on the Internet about people who tried reinstating benzos due to "intolerable" symptoms and getting WORSE. First line treatment for akathisia (propanolol) did not work as I could not tolerate due to hypotension. My TA/TD were so bad that I started giving away personal effects and had a solid plan to end my life in a peaceful manner. This is CRAZY. I HAVE FAMILY AND FRIENDS WHO LOVE ME. I LOVE MY LIFE DESPITE BEING HARMED BY PSYCHOTROPICS. I cannot give proper justice as to the horrors of severe, unrelenting akathisia. You just simply want to end the horrendous "internal chemical torture".

 

Hospitalized at 2 different facilities in an attempt to stabilize and reinstate me back onto Klonopin. Took about 10 days to stabilize. Horrendous experience at both hospitals because they tried to diagnose "underlying anxiety disorder" or "agitated depression" instead of acute Remeron withdrawal, multiple med cold turkey, and exposure to polydrugs. Wanted me to start on Seroquel 300 mg in addition to Klonopin. When I questioned the intelligence of adding back in an atypical for TD they backed off that idea. This could have worsened my TD! Now back on 2 mg of Klonopin (no other meds).

 

Once I got home from hospital on 2 mg Klonopin (no other meds) and processed my trauma, I HAVE ZERO SYMPTOMS OF TA/TD. I am very sad I had to reinstate, but so grateful that I was responsive to the Klonopin and did not get worse. I am also processing my trauma and anger over what psychiatry has done to my family and me. But despite all the horrors, the sedation and cognitive decline, and the knowledge that I am an IATROGENIC BENZO ADDICT, I am trying to move forward each and every day with the hope that one day I will be benzo free and free of TA/TD.

 

Saw specialist in movement disorders, a neurologist, who diagnosed TA/TD after viewing the video my mom took during one of my nightly episodes (10-15 hours of non-stop pacing, intrusives, rocking, lip smacking, lip puckering, respiratory "grunting" - all involuntary movements)and viewing my extensive psychotropic med history, and my excellent response going back on benzos as being Tardive Akathisia with overlying Tardive Dyskinesia caused by exposure to SSRI's/SNRI's/Atypicals/Lithium/Dekakote (unknown if it was a single agent or combination). My neurologist said it would take "months to years" for the TA/TD to resolve completely. He said he honestly does not think it is "chronic". God I hope he is right.

Edited June 2, 2012 by annej

[Barbarannamated]

Anniej,

My heart goes out to you. Thank you for sharing your story...to your mother for videotaping the 'evidence'. I'm glad Klonopin continues to work for you. I recently posted that 1mg Klonopin qhs still relieves bruxism after 15 years. I'm undoubtedly dependent on it, but not "addicted" (not increasing dose, drug seeking, etc). Pharmacologically, it doesn't makes sense, but i know it helps. It sounds like your use of K is similar. http://survivingantidepressants.org/index.php?/topic/2302-klonopin-still-working-for-bruxism-after-15-years/page__pid__22900#entry229

 

 

I'm also trying to process trauma of hospitalizations. It's hard to describe to anyone who hasn't been subjected to the demoralizing experience. http://survivingantidepressants.org/index.php?/topic/2344-hospitalizationpast-treatment-trauma/page__pid__23272#entry23272

 

B

[annej]

I just found a discussion by Dr. Shipko where he discusses akathisia as being a problem with discontinuing psychotropics and his reasons for not advocating a "willy nilly" approach at advising people to get off of meds. If I were not so benzo-brained at this time, I would attach the appropriate link back to his post. Instead, I will copy/paste his post from "Communications with Dr. Shipko" as follows:

Posted 29 March 2012 - 10:07 PM

"This thread is wrong in assuming that I do not "treat" antidepressant withdrawal. I am skilled at it and to this day I still help patients who want to stop taking antidepressants as long as they understand the potential risks and benefits of stopping.

 

Whoever wrote that I don't know how to "treat" misunderstands my opinions. It seems that a doctor has to be either for willy nilly prescribing the drugs or adamant about the importance of stopping the drugs. Once a psychiatrist criticizes the drugs, it is generally the end of a lucrative and successful private practice. The natural next step is to take the position that everyone should be off the drugs and try to make a living off of that position. It is not so simple as an either or situation. Do you really think that Glenmullen and Breggin find universal success when tapering and stopping drugs? Do you think that their patients don't crave the drugs and restart even after an uncomfortable withdrawal? I don't know, but I suspect that my observations are probably universal. The only truth is that people should avoid starting the drugs if at all possible. Once on the drugs, advising everyone to stop is not clinically sound. Just as patients need to be fully informed of the risks and benefits of taking a drug, they need to know the risks and benefits of stopping the drug, which include serious and disabling symptoms which may not remit when restarting the drugs and which may last for years.

 

I want to tell you all, that if I thought that getting people off of SSRIs was universally beneficial, then I would have already opened my SSRI withdrawal clinic and would have a national franchise on withdrawal clinics. I only hope that this board can understand that I report accurately what my clinical experience has been for the benefit of all. I choose not to be another ball and chain on the ankle of people taking the antidepressants promoting a simplistic agenda; stopping SSRIs is not so simple.

 

For the record, I still take patients off of antidepressants, and work with some very difficult cases. However, I give them informed consent about the observations I have made concerning withdrawal, including the fact that a lot of patients go back on the drugs (drug craving is a problem), that sometimes cutting the dosage results in serious and disabling symptoms that do not improve with restarting the prior dosage (Breggin writes about this but has never had this happen in his practice - I have and it is a disaster), and some of the drawn out very uncomfortable and disabling symptoms lasting years - particularly akathisia, which at best resolves slowly over time.

 

There are no meaningful studies on the subject, so all I can offer you is my observations. My observations might reflect a particularly difficult patient population or other confounding variables, but I am honest in my reporting. It irks me that I read comments from people who have come to see me or have contacted me who are very mentally ill and take information in the visit out of context or written completely wrong information. I would love to write back here about those people and the actual interactions, but I am prohibited by confidentiality laws.

 

I am not frustrated or burnt out, and offer my findings to you to take for what they are worth. From my standpoint it is important to consider the disability, the suffering, the craving, the recidivism and the protracted neurotoxic effects that occur sometimes when embarking on a withdrawal strategy.

 

Different clinicians will have different experiences; this is exactly why detailed scientific studies on the subject are needed. Until such studies are obtained, all anyone has is the clinical observations of the practitioners who have worked in the field. I offer my opinions freely and do an enormous amount of pro bono work. Please do not criticize me because I do not take the knee jerk response that everyone taking SSRIs is going to do well with tapering and stopping the drugs.

 

Absent real science on the subject, my opinion is only one opinion, and feel free to disagree with me, but I would hope that it is understood that I accurately report my findings with a purpose to help people the best I can."

~~~~~~~

 

I had the opportunity of consulting with Dr. Shipko back in 2011 and I believe he did his very best in warning not only myself, but my family about the inherent risks in discontinuing psychotropics. I was hellbent on getting off of medications that I felt had caused me (and my family) great harm, but not until I experienced the subjective horrors of severe Tardive akathisia and Tardive Dyskinesia 4 to 6 weeks after getting off of Klonopin (which undoubtedly "masked" the TA/TD) do I fully appreciate and agree with what Dr. Shipko was intending to convey - getting off of psychotropics has RISKS.

 

In all honesty, Dr. Shipko was spot on when he told me "you are screwed". Perhaps this was not the most eloquent way of communicating his experience of seeing some patients suffer long term complications of getting off of meds and at the time it made me feel hopeless. However, my recent experiences of the horrors of the complications of medication withdrawal, specifically tardive akathisia/TD give me a profound respect for Dr. Shipko's experience and understanding of the withdrawal phenomenon. He is the only pdoc I have seen who acknowledges this phenomenon.

 

For anyone who is contemplating coming off of any psychotropic drug, please, please find out as much as you can as to the possible life long consequences of doing so. Getting off of psychotropics can have devastating consequences that may not be reversed by going back on. I will copy this post to the other board in the hopes that he sees this and comment further if he so desires.

[Barbarannamated]

Appreciate that comment, Anniej. I have yet to establish a relationship with a new psychiatrist and need to. I will contact Dr. Shipko as he is the only doc in area I know of who understands.

Would you reccomend the Movement Disorders specialist? My bruxism was brought on by Zoloft and has not gone away (NOT equating to the TD you're experiencing!). My endocrinologist mentioned the possibility of Parkinsons after my many years on SS/NRIs and APs for depression.

Thanks for your input.

[elizabeth11]

Annej-

 

Am so sorry to hear about what has happened to you, your having to deal with the doctors wanting to slap an new dx on you and give you more drugs when in the hospital as the drugs are what causes the problems we all are dealing with.

 

Just am so, so sorry.

 

[annej]

Appreciate that comment, Anniej. I have yet to establish a relationship with a new psychiatrist and need to. I will contact Dr. Shipko as he is the only doc in area I know of who understands.

Would you reccomend the Movement Disorders specialist? My bruxism was brought on by Zoloft and has not gone away (NOT equating to the TD you're experiencing!). My endocrinologist mentioned the possibility of Parkinsons after my many years on SS/NRIs and APs for depression.

Thanks for your input.

 

The movement disorders specialist that I saw is Dr. Daniel Togasaki at USC Keck Hospital in Los Angeles. He was exceptionally thorough all the way through the taking of history and his physical exam and I felt that his understanding of the various (and yet to be thoroughly understood) pathways by which akathisia and TD evolve to be very up-to-date. His prognosis is "months to years" which is horrible to hear, but did not feel it would be permanent. There is an expert in akathisia/TD at the University of NSW (Australia) by the name of Professor Perminder Sachdev who you may be able to get a Skype consult (as he is not entitled to treat persons outside of Australia). He may be able to refer you to a specialist in the United States. He wrote a chapter on Tardive Akathisia and Tardive Dyskinesia in a book you can google called Movement Disorders which is very, very interesting. I was able to read the entire chapter (which was very, very interesting) by searching for his name and/or Tardive Akathisia on Google Scholar.

 

I am so sorry that you have the bruxism - it must cause so much tension in your jaw and facial muscles, not to mention the wear and tear on your teeth.

[Altostrata]

annej, thanks for posting this. I'm very sorry you've had such horrible experiences with psychiatry.

 

Did you see Dr. Shipko for going off the benzo?

 

Looking at your Intro topic at http://survivingantidepressants.org/index.php?/topic/1542-annej-off-long-term-snris-since-july-2011/page__p__14505__hl__annej__fromsearch__1#entry14505 , it seems to me that there are several factors that have contributed to your developing tardive akathisia/TD:

 

- Severe adverse reaction to Effexor XR, yet you were misadvised to keep taking it, with the benzo. While you didn't display any symptoms after taking the benzo, the excessive activation from Effexor continued its work on your nervous system.

 

- Cold-turkey off Effexor and various drugs after that. Each of these further destabilized your nervous system.

 

- Too-fast taper off Klonopin, further destabilizing your nervous system.

 

 

None of this is your fault, it's medical error (and I hope you let your doctor know his or her trail of mistakes). But I don't believe you can say going off a medication is the sole cause of your problems.

 

You are not entirely "screwed" because taking Klonopin again seems to quell your symptoms. This is definitely better than the alternative.

 

His prognosis is "months to years" which is horrible to hear, but did not feel it would be permanent.

While not great news, again, this is better than the alternative.

 

I've corresponded with Dr. Shipko about warning people about withdrawal. Here is my summary of our conversation:

 

Yes, withdrawal can be very difficult. Dr. Shipko and Dr. Healy have both found there is a small minority of people who cannot go off the drug no matter how slowly they taper. There is that risk, but most people can successfully taper at a pace individualized to their own tolerance.

 

I asked Dr. Shipko how he distinguishes people who can go off medication from people who cannot. He can't tell in advance. He said he tries tapering them and if they have problems, he stops.

 

I've clarified that while he is knowledgeable about tapering, Dr. Shipko does NOT treat withdrawal syndrome after a person has quit. This is possible but he doesn't know how to do it (I wish he would learn, because it might brighten his outlook).

 

So, yes, going off psychiatric medications has risks but NO ONE KNOWS who will suffer the worst case scenario. The risk is small, but not non-existent. Most people can successfully taper off if they listen to their bodies and go as slowly as they need to.

 

It is entirely your choice to go off psychiatric medications. This site does not advocate that decision, it only gives you information to discuss with your doctor if you wish to.

[annej]

Annej-

 

Am so sorry to hear about what has happened to you, your having to deal with the doctors wanting to slap an new dx on you and give you more drugs when in the hospital as the drugs are what causes the problems we all are dealing with.

 

Just am so, so sorry.

 

 

Hi elizabeth11,

 

Thank you for your empathy and kindness. Yes, it was a horrible experience to know that I had TA/TD and to be told it was "agitated depression" and that Seroquel was the answer. I was agitated, but only because I could not control the involuntary movements and was so worn out from pacing for hours and hours on end.

 

I just hope that anyone who is new will not jump on the bandwagon thinking that a "slow taper" will always ensure positive outcomes when it comes to getting off of these drugs which are quite clearly "neurotoxic". Hugs, Annej

[annej]

annej, thanks for posting this. I'm very sorry you've had such horrible experiences with psychiatry.

 

Did you see Dr. Shipko for going off the benzo?

 

Looking at your Intro topic at http://survivingantidepressants.org/index.php?/topic/1542-annej-off-long-term-snris-since-july-2011/page__p__14505__hl__annej__fromsearch__1#entry14505 , it seems to me that there are several factors that have contributed to your developing tardive akathisia/TD:

 

- Severe adverse reaction to Effexor XR, yet you were misadvised to keep taking it, with the benzo. While you didn't display any symptoms after taking the benzo, the excessive activation from Effexor continued its work on your nervous system.

 

- Cold-turkey off Effexor and various drugs after that. Each of these further destabilized your nervous system.

 

- Too-fast taper off Klonopin, further destabilizing your nervous system.

 

 

None of this is your fault, it's medical error (and I hope you let your doctor know his or her trail of mistakes). But I don't believe you can say going off a medication is the sole cause of your problems.

 

You are not entirely "screwed" because taking Klonopin again seems to quell your symptoms. This is definitely better than the alternative.

 

His prognosis is "months to years" which is horrible to hear, but did not feel it would be permanent.

While not great news, again, this is better than the alternative.

 

I've corresponded with Dr. Shipko about warning people about withdrawal. Here is my summary of our conversation:

 

Yes, withdrawal can be very difficult. Dr. Shipko and Dr. Healy have both found there is a small minority of people who cannot go off the drug no matter how slowly they taper. There is that risk, but most people can successfully taper at a pace individualized to their own tolerance.

 

I asked Dr. Shipko how he distinguishes people who can go off medication from people who cannot. He can't tell in advance. He said he tries tapering them and if they have problems, he stops.

 

I've clarified that while he is knowledgeable about tapering, Dr. Shipko does NOT treat withdrawal syndrome after a person has quit. This is possible but he doesn't know how to do it (I wish he would learn, because it might brighten his outlook).

 

So, yes, going off psychiatric medications has risks but NO ONE KNOWS who will suffer the worst case scenario. The risk is small, but not non-existent. Most people can successfully taper off if they listen to their bodies and go as slowly as they need to.

 

It is entirely your choice to go off psychiatric medications. This site does not advocate that decision, it only gives you information to discuss with your doctor if you wish to.

 

Hi Alto,

 

No, I did not go to Dr. Shipko specifically for benzo withdrawal. I saw him in consultation to help me get off the plethora of meds I was on that were causing mood instability and over-sedation.

 

I did not cold turkey Effexor. I went from Effexor to Cymbalta to Pristiq (over the years) and bridged with Lexapro and tapered off of Lexapro without any evidence of akathisa or other problems at that time. (I have already discussed my Pristiq to Lexapro bridge in another discussion).

 

A slower taper off of K may or may not have alleviated my suffering. I don't think the K had much to do with the TA/TD. But I always advocate for slow tapers - although it is still very much of a crapshoot as to who will suffer and who will get off easily. We agree on this. I would change the term "most people" to "many people can successfully taper off if they listen to their bodies and go as slowly as they need to. The fact is, the drugs are toxic to the brain, but the good news is that the brain has the wonderful property of plasticity and I am hopeful that others like you and me will recover in time.

 

Bottom line: There are too many confounding issues due to the polydrugging and being on K the entire time (which may have masked any early-warning symptoms of akathisia/dyskinesia) to point to any particular drug, drugs, or rate of taper. It's anyone's guess at this point.

 

 

All the best, Annej

[Altostrata]

Yes, too many confounding variables, and we can't redo history to try it another way.

 

One thing is for sure, your initial doctor did not recognize an adverse effect of Effexor and, improperly, covered it up by prescribing a benzo. Too many doctors are doing this. People introduce themselves here on the antidepressant-benzo combo all the time.

 

It's really a crime. Doctors have got to stop doing this.

[annej]

Yes, too many confounding variables, and we can't redo history to try it another way.

 

One thing is for sure, your initial doctor did not recognize an adverse effect of Effexor and, improperly, covered it up by prescribing a benzo. Too many doctors are doing this. People introduce themselves here on the antidepressant-benzo combo all the time.

 

It's really a crime. Doctors have got to stop doing this.

 

I so agree with you Alto. I wonder how many years it be when the entire psychotropic drug debaucle/DSM psychiatric diagnostic "bible" is accepted in history as being yet another one of psychiatry's blunders. The scourge of lobotomy and forced sterilization of the "mentally ill" comes to mind. Where is the science?

[Barbarannamated]

Has psychiatry ever NOT been a blunder?? Apologies to any ethical psychiatrists who may read this, but since the split of Neurology and Psychiatry, it seems that Neurology got the science portion and Psychiatry has been spinning theories and parading them as science. As mentioned previously, when there is labwork or valid imaging to prove a disorder, it becomes the domain of Neurology - and a DISEASE, for the most part.