Post Benzo Protracted Withdrawal Support Group

[[gi...]]

Thank you for responding.  The list below are my symptoms and I have had every blood test done and they all say I'm fine.  Now my feet ach if I stand on them for more than 10 minutes and the nerves in my alms and legs hurt.  Please let me know our experiences.

 

 

 

Over sensitive

I high five someone and my hand hurts for 5 minutes

I press the elevator press button and it hurts - electric shocks

Walking up ladder and had to grab hard felt electric shocks going through my body

 

Fatigue

When I get fatigued then my body starts to hurt-acid in veins

happen about 2 pm everyday

Walking up stairs

 

Skin

Always infection in ears

Itchy scalp

Bottom of feet marks

Spot left outside forearm


White specks fungus bottom of feet body


Pimples shave arms and face it's never happened before


Brown dots on forehead and arms


Skin cuts on my body my feet then my forehead


Red dot on stomach


Motorcycle scar more pronounced


Loss of hair face not sure if from IPL Laser company


Burning in feet when put on shoes

Nose continually itches on inside

Bump inner left forearm just above wrist

Scabs on back of head

Cold sore

Skin elasticity

 

Inside

Brain fog always accompanies pain

Stomach distention / bump lower belly

Blood in stool only fro two days

Frequent urination after going off propercia and rogaine

Weight gain

Right Kidney area when sit

Shins feel different

Legs clicking when I walk

Right high ankle hurt

Get up sitting dead leg then tingling 


Weight gain
 in belly

When get up sitting dead leg
 I can feel pins n needles

Aching in base of wrist and both ankle


body does not heal fast

Bruising not heal

Aching inside shoulders

Stiffness in fingers not joints

Bones feel smaller 

Can feel hernia again

Feet plantars faciatis

Feet feel heavy

Muscle loss over all body composition has changed

Ligaments aching in elbows when I do tricep push downs at gym

Viens legs coming out over last year

Weird muscle configurations shins

Twitch at night when I drink caffiene

Athletes foot right pinky not heal at all immune system

Tingling lower back

Body and head itching

 

Josh,

 

You listed many of the symptoms I had at year 1, but they've since gone away.  The bumps I had were hives (brought on by w/d) and I also had weird bumps in my mouth which scared the hell out of me.  But the stinging, sensitivity to light (sounds and smells), tingling (I had "pounding back" which comes back when I'm stressed).

 

I can't believe the arrogance of these doctors, who have seen your physical symptoms and still write them off as figments of your imagination!!  I hope the mayo clinic brings some answers and resolution.  You might want to get in touch with helpme123 - she has many of the symptoms you described, and is as far out as you.  She might have learned something in her search for answers.

 

I hope you find answers!! Please keep in touch!

 

ginger

 

[[ta...]]

I'm joining this group.  Hello all!  I am going through a very rough time about 4 months out.  Lots of anxiety and depression.  It does seem to come after some life stressors, which I've had a few lately.  But the depression, headaches and dizziness sometimes just happen and the anxiety is there all the time.  I'm just waiting and hoping it all goes away. 

[[we...]]

dear tablasco,

 

generally, protracted refers to symptoms lasting more than 18 months.  I was very sick at 4 months out.  You may get better support in the post benzo withdrawal group (not protracted).

 

It does get better, it's just so darn slow.

[[wo...]]

Josh,

 

In your list of symptoms, you list "always ear infections".  Have you ever had a scab appear on the back of your ear(s) in the crevice where the ear is attached to the skull?  I've had one that I can't get rid of, appears and disappears all the time.  I sleep on my left side all the time and it hurts so bad when I lay my head on the pillow that I can hardly get any sleep.   

 

Woe

[[ta...]]

sorry wellness.  Thanks!  I hope everyone here gets better soon!

[[st...]]

woebgone, IMO, I would have a dermatologist check out why the area behind the ear is not healing.

 

Patty  xo

[[Ne...]]

I have probably already been too vocal about this differentiation between Post and Protracted.  From what I was told the 18 month guideline was noted in Heather Ashton's material...someone I totally respect...however, by having these two Benzofree thread separate is confusing...Protracted means continuing on...as does Post mean afterwards.   

[[we...]]

New Life,

 

it can be scary to have post benzo reading about some members who are still symptomatic and years out.  This thread was created so that we could have a place to share without scaring people who are in acute withdrawal.  And yes, the name is a bit confusing.  I think keeping the two threads is a good idea, perhaps we could change the title of one of them so that they don't look so similar.

[[wo...]]

Stoneyco,

Thank you.  I have an appointment with a dermatologist for this coming Monday.  Kind of scary.  I'll let you know if it's benzo related.

Woe

[[Ne...]]

New Life,it can be scary to have post benzo reading about some members who are still symptomatic and years out.  This thread was created so that we could have a place to share without scaring people who are in acute withdrawal.  And yes, the name is a bit confusing.  I think keeping the two threads is a good idea, perhaps we could change the title of one of them so that they don't look so similar.

 

Hello Wellness..I have already made a pest of myself by suggesting...more than once...that BB creates a new subject heading for those of us who are finally BenzoFree...in which case there could be more than one thread.

One of the reasons given for not doing so was that BenzoFree people might not engage with those still in acute withdrawal. 

 

 

 

 

 

[[aD...]]

Josh,

 

In your list of symptoms, you list "always ear infections".  Have you ever had a scab appear on the back of your ear(s) in the crevice where the ear is attached to the skull?  I've had one that I can't get rid of, appears and disappears all the time.  I sleep on my left side all the time and it hurts so bad when I lay my head on the pillow that I can hardly get any sleep.   

 

Woe

Hi there, woebgone.

 

No need to be worried. I've had this a few times in my life. I doubt it's due to benzos, but stress does seem to have a correlation in my experience. I can't remember the name of what causes it, but in every case the derm gave me a cream and it went away within a week or less.

[[pr...]]

i have that too. a scab behind my right ear that i every so often, kinda peel away, put on some hyfrogen peroxide and neosporin.

i think it's benzo's but i am at the stage right now where i have to think everything is withdrawal or else i will go crazy in my brain.

it's just easier to say it's w/d for me right now. i do hope it goes away.

[[wo...]]

I hear you prettydaisys.  I also contribute everything to benzo protracted withdrawal or I would lose it too.

[[Ca...]]

I am 20 months out and have muscle twitching in my calf for a month now. Is this possible?

[[pr...]]

Carlover,

 

i think it's possible. the first time i became benzo free i had a very bad protracted withdrawal at 7 years out.

i think mine came on from stress. i can't believe it happened after that long. i do not wish to alarm you and this was my experience. but it sent me back out for another ten years on klonopin. i've got a real long haul here and i have to be very careful if any protracted withdrawal does happen--that i know that it is a protracted w/d. i can't keep going out there like this.

 

anyway, that was just my experience. but i do think that is possible to have something like that at 20 months.

 

pretty

[[Ne...]]

This is from a website called Beyond Meds:

Psychiatric drug withdrawal and protracted withdrawal syndrome round-up

December 4, 2012 By Monica Cassani

In the course of my work with those coming off psych meds I’ve learned that there are few people, even among critics of psychiatry that have a clue at the potential severity of psychiatric drug withdrawal syndromes. That also means there are virtually no professionals that can offer meaningful support when people encounter serious issues. We remain dependent on each other.

Other than those who’ve directly experienced protracted withdrawal or those who have lived with those who have experienced it, it simply remains under appreciated and therefore under treated and under recognized even, as I said, among critics of psychiatry. It’s rather horrifying for those of us who find ourselves struck by such illness. While perhaps a minority, we are not an insignificant minority. I alone have had contact with 1000s of us.

 

The other thing to consider is that we are perhaps not even a minority because the fact is so many issues with withdrawal are not recognized at all and are instead considered and then treated as the “underlying illness,” many folks simply get sicker and sicker on meds and never even know why they’re ill. Those people never come to understand that all the multiple trials of drugs and the numerous times of coming off and on them has actually been the cause of their illness.

 

I’m putting together a collection of withdrawal links for the navigation menu since the drop-down menu has become rather long. I will post it as a new post and then it will be accessible permanently from the top of the blog.

 

Generally, prolonged withdrawal syndrome is not recognized by medicine. You will find very few doctors to diagnose it and still fewer to treat it. This is a collection of links that might help you educate yourself so that you can find more appropriate care when the time comes as well as hopefully avoiding falling ill at all. I found that being well-educated and finding doctors who respected how much effort I put into educating myself helped me. It must be said, though, that it is also a curse because for every doctor who appreciates a knowledgable patient there are likely 15 or 20 or maybe even more who feel threatened by that same patient. Still, it is a plus to know what we are doing.

 

I will update this page as appropriate and as I remember about older posts from the archives.

 

This post and it’s content really only scratches the surface of the issues we face. Still it’s a good place to start.

 

 

●  Some thoughts on stopping psychiatric medications – pros and cons to coming off

 

●  Introduction to psychiatric drug withdrawal syndrome

 

●  Psychiatric drug withdrawal: Why taper by 10% of your dosage?

 

●  The slowness of slow tapers (safer withdrawal from psychiatric medications)

 

●  Withdrawal syndrome vs adrenal fatigue

 

●  Protracted withdrawal from SSRIs and SNRIs antidepressants

 

●  GABA/Glutamate cycle in withdrawal from psychotropics– SSRIs, benzos, and Lamictal

 

●  Benzo withdrawal info

 

●  Lamictal redux

 

●  Multiple drug sensitivity (a not infrequent outcome of over-prescribed medications)

 

●  Trellis: this is your brain on (psych) drugs

 

●  GABA/glutamate system and how it might work with benzodiazepines and Lamictal

 

●  Drug Withdrawal and Emotional Recovery

 

For general information on withdrawing from psychiatric drugs see here: Withdrawal 101

 

For additional information on psychiatric drug withdrawal support and withdrawal boards see here: Support in withdrawal

 

Share all of this information with the doctors in your life:  A plea to prescribing physicians and psychiatrists: please help us heal

 

See here for the Freedom Center and Icarus manual:  Harm Reduction Guide To Coming Off Psychiatric Drugs & Withdrawal (newly revised edition)

 

I also have a page that is a collection of my own withdrawal documented.  It has a lot of posts that talk about what I learned on the withdrawal boards while I try to recover from my own protracted withdrawal and so a lot of it has value to others in withdrawal: Monica/Gianna: withdrawal documented

 

Recently the concise story of my withdrawal and subsequent disabling iatrogenic illness was published on David Healy’s site, RxIsk: Monica’s story: the aftermath of polypsychopharmacology

 

And for ways to support your recovery you can visit the Healing Arts and the Nutrition sections at the top of the page. There are drop down menus available with lots of options.

 

If you’ve found yourself very ill from this process I also have a section at the top of the page to support those with Chronic Illness. Check that drop-down menu too or click here

 

[[pr...]]

New Life,

 

this is awesome! i've heard about the beyondmeds.com but haven't been there yet.

i love what it says about the doctor's feeling threatened by a patient who has knowledge and is educated. so you know how often i've been snickered at. it's really unbelievable. so i wanted to make up my own little benzo manual that i can just drop with any doctor i may ever end up with is that happens. or any health care practitioner too.

i would love to know when you will post this as a new post? so i can print it out and add it to my file for the benzo manual.

 

the Gaba/glutamate cycle has me especially intrigued. and i wonder if you can also find anything about the kindling neurological withdrawal as that is what i am going through?

 

thanks, pretty

[[Ho...]]

Hi all.  I am in need of some support today and was hoping I might find it here.  I used to spend all day, every day on these boards, but as the intensity of my symptoms decreased, so did my time on the forum.  I am just over 18 months off.  Up until approximately 3 weeks ago, I was VERY SLOOOWWWLLY improving.  I still had many symptoms and every day was still a challenge, however, I was functioning for the most part and my mind was at peace most of the time.  I did have a few cocktails with friends for the first time in almost 2 years.  Approximately 4 days later, I had a major setback and I have been intermittently feeling terrible ever since.  It feels like a year ago all over again.  I am still unsure of whether or not the alcohol caused the setback because there was a 4 day delay, or if it was just a coincidence and a wave was coming anyway.  Either way I am feeling very frustrated.

 

I had actually finally begun applying for jobs, thinking I could struggle through the days and finally help with the finances around my house.  I also thought it would help distract me, pass the time until I am completely healed, and strengthen my still cog fogged brain.  Anyhow, now I am wondering if I will be able to handle a job.  Today I have been in bed all day with that vibrating, shaky feeling, flu like symptoms, severe DP/DR, and I had my first crying fit/breakdown in several months. 

 

Is it common to have these types of major waves this far out?  Has anyone had these waves and then seen improvement?  Do you think this 3 week+ wave could have been all due to those 2 vodka tonics I had 4 days prior to the start of this?  Is there anything I can do to help myself?  I did begin taking fish oil today, as well as some sea salt in water, because I read this can help the adrenals.  I had stopped experimenting with supplements long ago but thought these things were worth a shot after reading some positive reviews on here.

 

I thought for sure I would be healed by this point. I am now prepared to be at this for much longer.  I can't believe I have already lost 2.5 years of my life because of these meds and may lose that many more.  Any words of encouragement or advice would be appreciated!

 

[[Wh...]]

Hi Hope4444,

 

While I can't offer advice or encouragement, I can offer validation that yes, having a couple drinks (2 1/2 to be exact) has set me back bigtime.  I was feeling fully recovered, the physical pain was gone, gone, and the mind was quiet with only normal thoughts and feelings.  I haven't heard this happen to everyone but for sure there is one other person who reported the same thing happening.  Mine also did not flare up until 4 days later.

 

This other person felt healed at 2 years, she had a few drinks and her setback lasted 6 months, mine has lasted much longer that.  I hope yours resolves quicker.  I'm so sorry.  The warnings about this need to be awhole lot stronger here on BB so we don't get careless when we recover.

[[Ho...]]

Whoopsie:

 

Thank you so much for responding!  And, oh wow!  I can't believe it.  If only we could turn the clocks back and not have those few drinks...boy were they not worth it.  However, I guess if we could turn the clocks back we wouldn't be in this mess in general. 

 

I guess all I can do is keep pushing forward.  I hope you feel better soon! Hang in there!

 

Hope

[[Wh...]]

Boy, yes, a time machine would be so handy, it sooooooooooooooooooooooooo wasn't worth it.  I was just doing it because I felt normal, was with normal people, doing normal things.  I have to remember that my receptors have been sensitized and I can't do what normal people do even if I feel I'm one of them.

 

I wish I could remember the name of the person that PM'd me and told me of her same experience.  If I do I'll send you her name so you can read her posts about this.

 

I just started a thread warning about this, if you like you could add your story to that thread to further emphasize the importance of not taking a stupid drink.  No pressure but it's there if you'd like to share.

 

Thanks for the well wishes, right backatcha. 

[[km...]]

Whoopsie,

I have to chime in here and tell that I had 1/2 a beer one night and it hit me right away.  My arms got tingly, anxiety went crazy, the fear was overwhelming,  I cried and cried for no reason and then about 5 hours later it let up.  Beware of the effects of alcohol.

Hugs

Kristin

[[Wh...]]

Hi Kristin 

 

Thanks for sharing your experience with alcohol.  I've been thinking about you and reading your posts on the other protracted thread and on your blog.  Man, I've just run right out of encouraging words for people.  I deeply regret the drinks I took, everyday.

 

Maybe you can add your experience to the alcohol thread, I just feel it's important to warn people what may happen to them too.

 

Best wishes to you, it's good to connect with you again. 

 

[[km...]]

Whoopise I have been wondering how you have been and sorry to hear your still in that wave.  I can feel your pain.  I will add my post to the alcohol thread.    Keep me updated on your progress.

Hugs

 

[[we...]]

whoopsie and kmarie,

 

The last time I drank about 17 years ago, I also had a similar reaction, 1/3 of a beer and within minutes I was crying and in black depression.  It's now clear I was kindled even back then.  It let up after a few hours.