Arbor: dealing with PAWS

[Oaktree1]

Thanks Arbor,

 

I misworded that last sentence - steady route off.  It writes like you had a steady taper off the drugs rather than the abrupt termination.  I remember reading your bio when you helped me out as a mod when I first joined and I could not believe the level of iatrogenic health crises you sustained.  My cognitive function is not the best at the moment.  At least it prompted an update on the hellish experience you had for other members.

21 hours ago, arbor said:

However, I still limit social interactions.  I can't say I have much stress tolerance--for all that it may be improving.  Going through the steps to calm myself works, but is still exhausting.  I hold out hope for that to get better

I understand your need to limit social interactions and stress tolerance.  During the last five years in which I had to come off Cymbalta (on medical advice)  I have to say I have acquired a  jaundiced opinion of other people.  I attempted to join a walking group recently.  The relentless chatter and jollity while walking at a very fast pace proved beyond me.  Unfortunately in the place where I am from that sort of chatter is obligatory and it would have been quite hard to just walk quietly behind others.  As it was I could hardly keep up. 

 

I used to be very popular with the younger members of my family of origin and could make them laugh - that's ancient history now.  I don't know if that will change as I have changed.  I find it hard to make light of what happened to me.  I am making this post 'all about me' but when I read your own story and the entirely avoidable damage you and many others here went through (in many cases for decades and you were on those drugs for decades), I think that does change one's outlook irrevocably. 

 

The process of coming off psychiatric drugs while suffering the disbelief and disengagement  of the medical profession along with their predilection for treating withdrawal as relapse by the addition of multiple drugs is a crucible that many people who try to go off drugs don't seem to emerge from.  I write this from my subjective reading of the threads that frequently go blank on this board when a member seems to hit a immovable block in their taper and when their life intervenes to deal out a blow that makes the taper unsustainable.   It's a terrible thing to write, given the level of suffering you endured at the hands of the medical profession, but you were one of the "lucky one's" in the sense that you once happened to meet a clinician in the ER who recognised psychotropic drug withdrawal.

 

21 hours ago, arbor said:

I agree with people who say there are no words to describe the hell of AD w/d.  The English language didn't evolve under such circumstances.

 I sometimes think of how people dealt with incurable diseases before the birth of the so called drug revolution that brought in drugs like streptomycin to treat tuberculosis.  Until that drug was invented people just wasted away from consumption either in fever hospitals like Waverly HIlls Sanotorium in Kentucky or if they had money up in the Alps.  There were fever hospitals in nearly every town in my own country for that disease. 

People didn't like to acknowledge it - people were put away and died quietly.  

 

I think the invention of that drug drove doctors insane - they thought there was a drug for everything.   A short time after streptomycin they synthesized the first psychotropic 'Chlorpromazine' in 1950 in France and it was this time last year I was prescribed that drug unawares for nausea and vertigo following Covid.  I took it for several days unaware until I looked it up and saw what it actually was.   It's still on the go 70 years later and commonly given for migraines and vertigo.  Of course doctors know that it gives people tardive dyskinesia but they continue handing it out anyway - it's almost unbelievable really.  They're unbelievable  - doctors...   

 

I think that untreated syphilis caused symptoms quite similar to those of psychotropic drug withdrawal - problems with the skin - rashes and pruritis, pains in the nerves and the joints,cardiovascular issues, and cognitive impairment and memory issues.  People just died from that or from the mercury poisoning that was meant to cure it and knowledge of the disease back brought complete social ostracisation certainly from the 16th century onwards until it became curable by penicillin.  

 

I think the big difference between psychotropic drug withdrawal and other diseases is the lack of acknowledgement.  People acknowledged consumption and syphilis.  They believed what was in front of their eyes.  Then they turned their back generally on the afflicted and put them out of sight but the disease was acknowledged and believed. 

 

However there has been 30 years of academic and public disbelief of those who suffer psychotropic drug withdrawal.  I think that's a first in medical history not that I ever had huge respect for doctors.  I think that's the worst aspect of it.  It's terrible to suffer but to suffer and have the origin of your suffering denied by the people who in many cases caused it - that is something so horrifying and lonely that I agree it is almost beyond description.  I can't really say that I have any real trust in doctors now and I have as little engagement with them as possible. 

 

21 hours ago, arbor said:

After so many months of windows and waves, mostly waves, and feeling deeply incapacitated, it now feels odd to find that my experience is steadier.  I'm less depressed and less anxiety-ridden.  I have reclaimed stronger executive function, meaning I can put challenges into perspective better again.

To be less depressed and anxiety ridden is a great thing.  I am hopeful that it will continue to improve.   To have periods of calm and steadiness is a real boon.   I am hopeful that it continues to improve and that you have periods of more steadiness.  The Hari book is a very gruelling read - not the best if you want to keep yourself on an even keel.  If one was out of the woods it's a worthwhile read but it left me quite shaken on the whole.   I'd maybe give it a pass.  

 

Oaktree1

[BrokenWings]

On 6/23/2023 at 7:33 PM, arbor said:

W/d has taken a huge toll on top of the iatrogenic damage caused by Zoloft, followed by a Prozac bridge.  Like all of us, I work on acceptance.  I also work on accomodating and compensating for the changes.  The news that I want to share is that I continue to get better.

 

@arbor I am elated to hear that you are continuing to get better.  Withdrawal and iatrogenic damage from these horrible psychotropic drugs are indescribable by words alone. An individual must experience it firsthand to be able to fully comprehend the living hell one goes through.

 

I too am working on acceptance, but I find it so incredibly hard to do at times. I hope you continue to improve and fully recover.

[Onmyway]

On 6/24/2023 at 12:33 AM, arbor said:

Thank you @Onmyway--W/d has taken a huge toll on top of the iatrogenic damage caused by Zoloft, followed by a Prozac bridge.  Like all of us, I work on acceptance.  I also work on accomodating and compensating for the changes.  The news that I want to share is that I continue to get better.  The wave/window pattern is still present but with less drama.  Some days I'm still easily stressed, my foot is numb, the tinnitus ringing.  Today, I hardly hear the tinnitus and my foot is normal.  I use these as checkpoints.  There are many symptoms of course, but by and large, my trajectory is positive.  I am so grateful to this site that has supported me through such anguish and despair.  Having models of people who have taken psychotropics many years and managed to reclaim their lives free of these drugs has helped me when the going has been blind.  

Thank you for all that you do here OMW to encourage and bring kindness to others.  I send you best wishes on your journey as well💜

Arbor

So wonderful to hear you are on a steady course @arbor. 

I've been dealing with some stresses and travel and missed your response. 

 

Isn't it nice to notice when the symptoms are missing? One of the pleasant surprises of withdrawal. I am so so happy that you are getting better. This nightmare is ending!

 

Big hugs,

OMW

[arbor]

Thank you for your thoughts and observations @Oaktree1

[arbor]

Hi @BrokenWings 🕊️  Thank you for these words.  I also appreciate:

On 6/28/2023 at 12:50 PM, BrokenWings said:

I too am working on acceptance, but I find it so incredibly hard to do at times.

So true.  Plus, there's so much to accept.  I hope there are people in your life who understand what you're going through.

Thinking of you, Arbor

[arbor]

This is difficult to write.  I was doing much better, sleeping better, feeling finally optimistic.  It had been awhile since I'd had blood tests which I need to get since being on AD's ended up causing MGUS.  To get general tests I had to see a new GP.  It was a mistake to share that I was still dealing with PAWS.  "That can't be," she said.  I shared a little more.  "I'm skeptical of everything you're saying!  I see from your last tests that you have high cholesterol.  Why have you quit your statin and ace-inhibitor!  We need to meet again (and be charged again) so I can set that up.  I'm very sorry you're having a relapse.  You need to see a psychiatrist."   A little more was said during which I asked her if she was taking an AD.  She called the question inappropriate and chose not to disclose.  However, the question makes big sense to me in more ways than one.  David Healy talks about the AD effects of emotional numbing, impulsivity, and poor risk assessment.  (I felt like asking her supervisor, Who in this Dept. is not drugged?)

I do my best to avoid stress as I just really can't handle it in any way.

I stopped sleeping.  This has been a few weeks and I haven't been able to rally out of the wave except in small tentative moments--when visiting with a friend or walking under the trees.  It embarrasses me that I can be so thrown off by somebody who's just ignorant and belittling.  I offered to send some info which she said she'd accept but may not read, and don't send too much.  Sigh.  To even send it, the computers are set up to charge me.  Amazing how locked into their ignorance the medical establishment has become.

I'm drawing strength from all of you to weather this renewed wave--your own experience and patience in coping with w/d does more than I can say.  I wish us all health and recovery.

Arbor

[GGGG]

I have high Cholesterol too and the dr offered me a statin drug and I said no. I told him I was going stay off bread, tortillas, and carbs. I'm going to check in January again. I also told him that I've been off antidepressants 3 .3 years. He said its jus mental and that the drugs were out of my system a month after I stopped taking them.  I told him to look up surviving antidepressants and medicating normal but he didn't look to interested.  

[BrokenWings]

@arbor 😭I am so sorry to hear about your setback. I know how incredibly discouraging and frustrating it can be especially after having a long window.

 

1 hour ago, arbor said:

It was a mistake to share that I was still dealing with PAWS.  "That can't be," she said.  I shared a little more.  "I'm skeptical of everything you're saying!  I see from your last tests that you have high cholesterol.  Why have you quit your statin and ace-inhibitor!  We need to meet again (and be charged again) so I can set that up.  I'm very sorry you're having a relapse.  You need to see a psychiatrist."

 

They don't know what they are doing none of them. They are all taught in medical school to prescribe drugs to alleviate symptoms. They are incredibly ignorant and fail to provide what is required by law "Informed Consent" to their patients. Very few doctors have woken up and realized what they are doing to their patients. They have either left the field or ventured out toward alternative medicinal practices. It is infuriating and the vast majority of the general public is still oblivious to how corrupt the medical system is in the United States and the rest of the world.

 

I am not surprised at the response you received from your GP. People think I am joking when I call GP's the modern-day version of a drug dealer. I am not joking it is reality, you don't need a street dealer anymore just visit your GP and ask for whatever narcotic you desire.

 

1 hour ago, arbor said:

I stopped sleeping.  This has been a few weeks and I haven't been able to rally out of the wave except in small tentative moments--when visiting with a friend or walking under the trees.  It embarrasses me that I can be so thrown off by somebody who's just ignorant and belittling.

 

I too feel embarrassed that I can still be thrown off by such trivial things even this far out. So take some comfort in that you are not alone when it comes to feeling like this. I do hope you recover quickly and your sleep returns. I know it will. I wish you well and hopefully, we will all get to write our recovery stories. 💜

[mstimc]

Hi arbor

I am so sorry to hear your in a wave, especially one triggered by a doctor in denial.  But we both know, as awful as they are, waves are temporary.  That doctor sounds willfully ignorant--one who chooses not to become educated.  Try not to let her monkey jump on your back. You have your own lived experience and those of all of us to depend on, while she has only the lines she's been fed by the pharma companies.  Regardless, I hope you see a window soon!

[Onmyway]

Hello sweet soul, 

so sorry you have been in a wave for a while but glad to see you here. You have been missed! It is perfectly understandable that someone like that will set off a wave - we have been traumatized and to have that denied is like putting salt in the wound. I know the term gaslighting is used indiscriminately and often inappropriately these days but what you experienced is a prime example of gaslighting. This person who was tasked with your care denied your experience. Know this: she is a little person in a cog who refuses to see beyond the little hamster wheel - nothing more.

 

Doctors are, unfortunately, taught to think of patients as unreliable witnesses of their own experience. It is bizarre to me how many doctors think patients are dumb, obstinate, attention-seekers and outright liars. Why? Why would a patient ever lie to you? I once had an experience with a doctor who insisted I had a migraine (I had had headaches for 10 days or so) and wanted me to show him that I was hypermobile (I am not!). He asked to see if I could bend my wrist in a certain way backward to touch my forearm. I could not. His final words were: "I bet you could if you really tried." Like, why? So that he could be right, because he had invented a story in his mind that I had a specific type of migraine that was due to joint hypermobility. I refused the amitriptyline and went on my merry way and don't even remember his name, he was that unimportant to me - the headaches stopped shortly after (I had a CFS leak instead).

 

Having said that, one of my GPs denied that AD withdrawal could be long lasting. I literally cried in his office begging him to prescribe the liquid citalopram. I was willing to pay for it out of pocket. I sent him articles. Four months later he apologized for not believing me. But he was an older GP, they made them differently before.

 

If you do bother to send this person articles, I think you should go with this one: https://www.thelancet.com/article/S2215-0366(19)30032-X/fulltext and this one https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4172306/ or this one https://psychrights.org/Research/Digest/CriticalThinkRxCites/KirschandSapirstein1998.pdf and this one https://www.psychiatrictimes.com/view/debunking-two-chemical-imbalance-myths-again She will disregard patient experiences on SA just as she disregards yours - to her we are probably antipsychiatry conspiracy theorists rather than suffering patients - labeling people conspiracy theorists is the easiest way to disregard proper arguments now - anti-vaccine nuts, anti-science etc are the other labels.  But I wouldn't pay to send articles to this person - you could drop these off at the office, if you wish. 

 

To get out of the current funk I would think about what exactly about this doctor makes you so upset? Are you feeling unseen? Powerless? Are you hopeless that the narrative will never change? Are you upset that she is blaming you and labeling you a 'broken' person with a psychiatric disorder? Are you upset that people like this exist and hurt others? Once you identify the upsetting thoughts it will help address the real hurt because I bet she is touching on deeper hurts.

 

You are believed here and your experience is valid and true as is the experience of all of us on this site. Some people will choose to be ignorant. There were people who wilfully denied the harm of cigarettes, performed lobotomies etc. I think things will change for antidepressants, especially because they have lost their patents and nobody really wants to defend them as strongly except for psychiatrists whose jobs depend on them. But guess what, nobody likes or respects psychiatrists - they are the pariahs of medicine. That thought makes me happy. Insert evil laugh!

 

So take heart, my friend, that change is coming. But more importantly, remember that the only importance that she has in your life is the one that you give her. Get your tests for MGUS (had to look this up, sorry you got this) and go your merry way - let this tiny person in mind and soul rot in her ignorance and rudeness. Have you ever considered MBSR - it is great at dealing with chronic and autoimmune diseases - there is research on it. 

 

Hugs, 
OMW

[arbor]

Dear @Onmyway  It's so good of you to take this time to add such support.  Your kindness is the best kind of medicine.  Thank you so very much💕

[Addax]

Hey Arbor.

I’m sorry to read about your negative experience with the dr and that you’ve been hit by a wave.  Both are very discouraging things to have happen.  The doctor sounds ignorant and dismissive - an invalidating and awful combination. 

 

On 10/18/2023 at 5:04 PM, arbor said:

It embarrasses me that I can be so thrown off by somebody who's just ignorant and belittling. 

You don’t have a thing to be embarrassed about. An interaction like that would throw me off too. Ignorance doesn’t excuse her belittling.  I had a somewhat similar experience with a nurse practitioner last winter. I had to lean in pretty hard and sent her journal articles about withdrawal. Pretty sure she never read them and she just humors me when we meet to “check-in” for five minutes, every three months.  Not sure I could tolerate her anymore than that. 
 

I hope the wave passes quickly and you are met with a wide open window!

 

 

[arbor]

Thank you @AddaxI truly appreciate this!  Hope you're doing ok with your taper.💜

[Oaktree1]

Hi Arbor,

 

I am very sorry to hear about your experience with the doctor but not really surprised.  

There's no point trying to get through to deaf ears.  I hope that you can come out of this wave soon.  

 

Oaktree1

 

[Angus]

@arbor

I am a relatively new member- just wanted to say I’m so sorry that you had such a negative experience. 💗 

Angus

[DataGuy]

I'm sorry to hear about your setback @arbor. It's very normal. I'm sorry your doctor is such a putz. I've had many like that : (. Feel better soon 🙏

[arbor]

Thank you @BrokenWings  This means a ton 💜

[arbor]

Thank you @GGGG and @mstimc  Reading your messages has been such a help🙏

My best to you, Arbor

[arbor]

Dear @Oaktree1 and @DataGuy--You both have been such supports.  I am deeply grateful.  I send hopeful wishes on your own recoveries. 💜

[arbor]

Thank you @Angus  I hope your taper goes smoothly.

[Angus]

@arbor thank you for your kind words- much healing to you as well.💕

Angus

[almuPA]

Dear @arbor,

 

That sounds like a terrible experience. Anyone would feel bad after that interaction with a GP. I mean, only reading it I feel frustrated! How is it possible to be so little empathic?

 

Unfortunately, almost everyone on this website have had a similar or somehow disappointing experience with a doctor or health professional. I really feel for you.

Please, don't take it personal. Your experience is valid, and we are all here as a testimony of that. That person has chosen to be ignorant even after you offered to send information, which says a lot about the kind of professional that she is. 

 

I hope you are doing better and recover from that event. And I hope you can visit another GP  in the future!

 

[arbor]

Thank you for your kind words @almuPA  I read on your site that you're doing better (able to do a lot, in fact!).  You've even found a hope-inspiring doctor.  These are encouraging to read.  I am so glad for your improving health.🌞

 

My tests showed that I'm close to anemic, so I'm now attending to getting more iron, and feel hopeful that it will help me sleep and have more energy and on top of that, feel less often grouchy!  I read a study associating sertraline (Zoloft) use with iron deficiency.  I have to keep working with the effects of the AD's and be glad for improvements now that I'm off of them.  

 

So good to hear from you💗

Arbor

[Gridley]

22 minutes ago, arbor said:

My tests showed that I'm close to anemic

Me too.  I started taking Feroglobin Plus syrup a few months ago and my anemia numbers are improving quite a bit.  It's has some other ingredients (Ginseng, D, CoQ10) so be careful if you're sensitive.

 

They recommend taking iron supplements with orange juice or vitamin C for absorption on an empty stomach.  I take it first thing in the morning.

 

Good luck with everything.

Edited October 23, 2023 by Gridley

[arbor]

Gosh, this is so helpful @Gridley Much appreciated.  I know you've been through a lot healthwise--I send best wishes as you continue to taper and continue to heal.

Arbor🙏

[Erell]

Dear Arbor, 
I understand the embarrassment, and it is so unpleasant that these people still have so much power over us.
But the stress you're feeling is perfectly understandable too: the interaction you're reporting shows a denial of your situation, of your expertise, and the power balance with prescribers is so unequal that it's hard to feel safe when our health may depend on their decisions.

You know that, but here you are believed and heard.

Although I deplore the circumstances of your message, it is good to read you Arbor ❤️ 

[arbor]

Dear @Erell  Your words are so helpful.  Thank you.  I feel stronger and freer just reading them!

Best wishes on your journey,

Arbor💜

[arbor]

I thought this was an interesting article that came out last month from OHSU:

Dr. Robinson has also been interviewed at MIA.

 

Review: Drug for panic disorder less effective than previously believed

 

Study finds publication bias inflated the efficacy of commonly prescribed drug benzodiazepine by more than 40%

By Erik Robinson  October 19, 2023  Portland, Oregon

 

New research reveals a widely prescribed type of sedative may be less effective than widely believed.

New research reveals that the nation’s most widely prescribed type of sedative may be less effective than clinicians and scientists have been led to believe, based on publications in medical journals.

The study, which published today in the journal Psychological Medicine, examined both published and unpublished data from five randomized controlled clinical trials reviewed by the Food and Drug Administration for alprazolam, known by the trade name Xanax XR. It is one of a class of sedatives known as benzodiazepines, widely prescribed since the 1970s to treat medical conditions such as anxiety and insomnia.

In recent years, benzodiazepines have been associated with serious clinical risks, including dependence, withdrawal, falls and cognitive impairment.

Erick Turner, M.D. (OHSU)

“Clinicians are well aware of these safety issues, but there’s been essentially no questioning of their effectiveness,” said senior author Erick Turner, M.D., professor of psychiatry at the Oregon Health & Science University School of Medicine and former FDA reviewer. “Our study throws some cold water on the efficacy of this drug. It shows it may be less effective than people have assumed.”

Turner and co-author Rosa Ahn-Horst, M.D., M.P.H., a resident in psychiatry at Harvard University, reviewed publicly available FDA data from phase 2 and phase 3 clinical trials conducted for extended-release alprazolam for the treatment of panic disorder. The extended-release formulation was approved by the FDA in 2003, while the original immediate-release formulation was approved in 1981.

They found that five trials had been conducted, but only three of them had been published in medical journals. Further, when the FDA reviewed the drug company’s trial results on how well the drug performed compared with a placebo, Turner said they determined that only one of the five trials had a clearly positive outcome.

Using meta-analysis, a statistical method of combining all study results, they found that alprazolam extended-release was still superior to a placebo, but not as much as the published data had conveyed. Specifically, they found that publication bias inflated the drug’s efficacy by more than 40%.

Turner said the findings may be especially relevant to patients and clinicians who haven’t used benzodiazepines previously, as opposed to those who use the drug infrequently or who have already become physically dependent. 

“This study will reinforce being cautious about starting a prescription,” Turner said.

[getofflex]

Hello, arbor.  I'm very sorry to hear about your experience with your doctor.  It sounds like she invalidated you, didn't respect you, and was rather arrogant.  I, too, would have been stressed and upset by it. And then, to add insult to injury, she acts like she can't really be bothered to read information you offer to send to her.  I hope that the wave is subsiding.  Sending healing thoughts and prayers your way. 

[arbor]

Thank you @getofflex for your kind words.  Now that I'm taking an iron supplement I'm feeling more resilient.  I had no idea that iron deficiency is also associated with anxiety and fractured sleep.  I hope you are doing well as we head into the holiday season.

Hugs,

Arbor

[Carmie]

Dear @arbor, nice to read that you’re feeling a bit better after the iron supplements 🧡

[arbor]

Thank you @Carmie.  It's always a boost to hear from you.  I hope things are going ok for you🙏

[getofflex]

19 hours ago, arbor said:

Now that I'm taking an iron supplement I'm feeling more resilient.  I had no idea that iron deficiency is also associated with anxiety and fractured sleep. 

Good to know!  I'm going to try taking some iron supplements too.  

[arbor]

Hi @getofflex  I recommend having a blood test first as having too much iron might lead to inflammation and other problems.  Best wishes to you, Arbor

[getofflex]

Thanks for the info, Arbor.  

[arbor]

I want to give an update which is challenging since it's still difficult day by day to know where I'm at.  Generally I'm better, and getting better.  Last week though I suddenly was seized by body zaps, very painful, around my right torso.  Eventually I read about using a pinching method around the spasming muscles which de-intensified the pain.  My sleep was interrupted of course.  A couple of days later I came down with a crackling aura in my left eye which in the past was diagnosed as a migraine caused by AD w/d.  (My eye doctors aren't afraid to acknowledge problems with the AD's).  The important thing for me was that the devastating depression and despair, so common during my earlier years following CT, did not come up. 

 

Something else I can say is that today I feel better than I have since this all began.  We know that tomorrow I could take these words back, but since yesterday, the tinnitus is the quietest it's been and my mood is actually (pinch me) up-beat.  I seemed to in fact enjoy stopping and talking with people I ran into on my walk.

 

One of my lingering symptoms is the neuropathy in my left foot.  I don't know whether this can be attributed to the Mgus I was diagnosed with following w/d, or just w/d.  Or maybe they overlap.  The oncologist acknowledged that the AD's likely caused the Mgus, but unhelpfully didn't write it up in his notes.  My foot has not reliably improved since the day acute w/d took me to ER.

 

Anyway, back to the good news:  I believe the iron supplements I'm now taking have helped.  I'm much better.  And this seems to me, at 5 years and 6 weeks, a miracle, golden, but delicate.  (I still feel phobic about meeting with doctors.)

 

Thank you for being here🙏  Arbor