Jump to content

UnfoldingSky: protracted withdrawal from Celexa, other drugs


UnfoldingSky

Recommended Posts

Hi, I am new here and quite thrilled that this forum exists. I am about fifty percent recovered from a series of life-threatening reactions to Celexa, followed by a c/t and then years of poly-drugging. As of Jan. of this year I am totally drug and psychiatry free and gradually rebuilding my life. I've come a long, long way and had every symptom from akathisia to whatever starts with "Z". I don't spend a lot of time on forums anymore, but would like to help out here to get some kind of change brought about where these drugs are concerned, and to give people support as I can. I also hope to get some help for the trauma of this ordeal, as well as the remaining issues (memory loss, exhaustion, impaired reasoning skills, some loss of creativity and imagination, twitching.)

 

Hope everyone is having a very relaxing day or night, wherever you are, and I look forward to getting to know you all!

 

Unfolding Sky

I am not a medical professional and nothing I say is a medical opinion or meant to be medical advice, please seek a competent and trusted medical professional to consult for all medical decisions.

 

Link to comment
  • Administrator

Good to hear from you, UnfoldingSky. Welcome to our community!

 

In your long recovery, what were your initial withdrawal symptoms? What do you have now?

 

Can you describe how recovery has gone for you?

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

Link to comment

Hello Sky... welcome to SA!

 

Don't forget to check out the Spa of your Dreams thread... it's bound to make you feel better, or at least smile!

 

 

Charter Member 2011

Link to comment

Welcome Unfolding Sky, congratulations on being drug-free. It sounds like you are doing really well.

 

With regards to creativity, this does improve.

 

Great profile name :)

 

 

I came off Seroxat in August 2005 after a 4 month taper. I was initially prescibed a benzo for several months and then Prozac for 5 years and after that, Seroxat for 3 years and 9 months.

 

"It's like in the great stories Mr.Frodo, the ones that really mattered. Full of darkness and danger they were, and sometimes you didn't want to know the end because how could the end be happy? How could the world go back to the way it was when so much bad had happened? But in the end it's only a passing thing this shadow, even darkness must pass. A new day will come, and when the sun shines it'll shine out the clearer."  Samwise Gamgee, Lord of the Rings, The Two Towers

Link to comment

I agree, your pseudo is brilliant!

 

I admire you so much for having managed to get free of all these drugs. You sure have guts. I wish the award were up to the prowess.

First AD -sertraline- in 2007at the age of 13 because of child abuse

2009-2013: intricate story of multiple wds, meds and cts, gradually became a living mess

Feb 2013: last CT from a cocktail of four drugs, symptoms are relenting but witness a constant sharpening of the brain

 

Link to comment
  • 3 years later...
  • Member

I just found out something interesting, US. I put just your (username) into the search box on this site and your Intro topic was the LAST entry at the end of page 2. Doing it the way I suggested using google, it is the first entry on the page.

 

Here, I just found an excuse to bump your topic all the way from 2011 to the present.

What happened and how I arrived here: http://survivingantidepressants.org/index.php?/topic/4243-cymbaltawithdrawal5600-introduction/#entry50878

 

July 2016 I have decided to leave my story here at SA unfinished. I have left my contact information in my profile for anyone who wishes to talk to me. I have a posting history spanning nearly 4 years and 3000+ posts all over the site.

 

Thank you to all who participated in my recovery. I'll miss talking to you but know that I'll be cheering you on from the sidelines, suffering and rejoicing with you in spirit, as you go on in your journey.

Link to comment
  • Moderator Emeritus

US, I'm glad to see your thread here!  Now I can check in and say HI more easily!!!

*I'm not a doctor and don't give medical advice, just personal experience
**Off all meds since Nov. 2014. Mentally & emotionally recovered; physically not
-Dual cold turkeys off TCA & Ativan in Oct 2014. Prescribed from 2011-2014

-All meds were Rxed off-label for an autoimmune illness.  It was a MISDIAGNOSIS, but I did not find out until AFTER meds caused damage.  All med tapers/cold turkeys directed by doctors 

-Nortriptyline May 2012 - Dec 2013. Cold turkey off nortrip & cold switched to desipramine

-Desipramine Jan 2014 - Oct. 29, 2014 (rapid taper/cold turkey)

-Lorazepam 1 mg per night during 2011
-Lorazepam 1 mg per month in 2012 (or less)

-Lorazepam on & off, Dec 2013 through Aug 2014. Didn't exceed 3x a week

-Lorazepam again in Oct. 2014 to help get off of desipramine. Last dose lzpam was 1 mg, Nov. 2, 2014. Immediate paradoxical reactions to benzos after stopping TCAs 

-First muscle/dystonia side effects started on nortriptyline, but docs too stupid to figure it out. On desipramine, muscle tremors & rigidity worsened

-Two weeks after I got off all meds, I developed full-blown TD.  Tardive dystonia, dyskinesia, myoclonic jerks ALL over body, ribcage wiggles, facial tics, twitching tongue & fingers, tremors/twitches of arms, legs, cognitive impairment, throat muscles semi-paralyzed & unable to swallow solid food, brain zaps, ears ring, dizzy, everything looks too far away, insomnia, numbness & electric shocks everywhere when I try to fall asleep, jerk awake from sleep with big, gasping breaths, wake with terrors & tremors, severely depressed.  NO HISTORY OF DEPRESSION, EVER. Meds CREATED it.

-Month 7: hair falling out; no vision improvement; still tardive dystonia; facial & tongue tics returned
-Month 8: back to acute, incl. Grand Mal seizure-like episodes. New mental torment, PGAD, worse insomnia
-Month 9: tardive dystonia worse, dyskinesia returned. Unable to breathe well due to dystonia in stomach, chest, throat
-Month 13: Back to acute, brain zaps back, developed eczema & stomach problems. Left leg no longer works right due to dystonia, meaning both legs now damaged
-7 years off: Huge improvements, incl. improved dystonia

Link to comment

I'm glad this one has been bumped. UnfoldingSky is awesome and a huge inspiration to me.

The only way out is through.

 

Aug 2013 - Augmentin leading to akathisia

Sept-Nov 2013 - Citalopram 20mg, severe reaction, off at 5mg. Valium 4mg, prn

Oct 2013 - 5 zopiclone tablets, 7.5mg

End Nov 2013-end Feb 2014, Seroquel, top dose 150mg, off at 25mg

End Nov 2013-early march 2014, Zoloft 100mg top dose, off at 25mg

End Dec-2013-early April 2014, lorazepam 1mg prn

April 3rd 2014 zoloft 5mg for a few days. 18/4/14 - zoloft, 1mg. Came off at 0.35 mg,14th June 2014

29 June 2014 - 1mg lorazepam, last ever

29 June 2014 - med free

Link to comment
  • Member

Yes she certainly is. Do you notice the interesting articles she posts in various forums for us to read?

What happened and how I arrived here: http://survivingantidepressants.org/index.php?/topic/4243-cymbaltawithdrawal5600-introduction/#entry50878

 

July 2016 I have decided to leave my story here at SA unfinished. I have left my contact information in my profile for anyone who wishes to talk to me. I have a posting history spanning nearly 4 years and 3000+ posts all over the site.

 

Thank you to all who participated in my recovery. I'll miss talking to you but know that I'll be cheering you on from the sidelines, suffering and rejoicing with you in spirit, as you go on in your journey.

Link to comment

Good to hear from you, UnfoldingSky. Welcome to our community! In your long recovery, what were your initial withdrawal symptoms? What do you have now? Can you describe how recovery has gone for you?

 

Well here goes, I am almost four years late answering this, forgive me, the reason was the trauma of revisiting this in detail was just too much at the time I signed up here.

 

I am going to try to keep this as short as possible.

 

Okay so this should be divided into two sections, one being adverse drug reaction issues and the other withdrawal. Since I had both.

 

My initial reaction problems were from stopping and starting an SSRI several times, after having once taken it without major issue for several years and then cold turkeying off it.  I had no problems doing that though I do not encourage people to ever try this unless either a doctor says you have a truly life-threatening problem from the drug or have only taken it a short period of time.  Somehow though I survived doing that.  About a year or so later though I restarted the drug for several serious situational problems.  But on restarting the drug I found it caused problems I had never had from it before, so that would lead to me stopping it.  This then would lead to mild withdrawal issues (or probably more likely some kind of mild lingering damage from the reactions) which would lead me to restart the drug as I initially thought the withdrawal issues were "depression".  This went on a number of times until it culminated with me staying on the drug for over a month, during which time the dose was increased three times.  During this span of time I had a number of new psychiatric complaints develop and as the dose increased the problems would either get worse or vary.  I also had several physical issues from the drug as well, which were key in realizing that it was the drug and not "mental illness" causing my problems.  It took me a while but one day I realized that as the dose increased the symptoms had mutated so after researching the drug further I found out that everything I had lined up with a drug reaction. 

 

Shortly after this a doctor also figured it out and advised me to stop the drug c/t. 

 

Before I continue I will list what the adverse reaction symptoms were:

 

-nausea (first problem I had)

-early morning wakenings

-inexplicable anger

-restlessness

-hypomania (mild mania)

-crying fits, often that made little sense

-a period where my thoughts slowed down quite noticeably

-anxiety over things that didn't used to make me anxious

-urges to make chewing movements with my mouth and to blink (I think this was a forerunner of the TD symptoms I would later get once I was given other drugs that cause it, including one I am sure played a big role in causing it)

-a bowel problem commonly linked to these sorts of ADRs (listed on the side effect profile sheet under "call your doctor immediately if you get...")

-overt and initially inexplicable suicidal urges (later I realized I had had a mild form of akathisia, and that these urges only hit when I felt mentally or physically trapped...so while driving, or when in places where it's not polite or appropriate to get up and leave, such as at meetings at work)

 

I can't recall what else, I am sure I'm forgetting some of them.

 

I have to stop there for the moment as my computer wants to shut down on me...

I am not a medical professional and nothing I say is a medical opinion or meant to be medical advice, please seek a competent and trusted medical professional to consult for all medical decisions.

 

Link to comment
  • Moderator Emeritus

Sky, you are so brave. Thank you for coming back to your thread and posting. I can't imagine how difficult it must be to rehash everything.

*I'm not a doctor and don't give medical advice, just personal experience
**Off all meds since Nov. 2014. Mentally & emotionally recovered; physically not
-Dual cold turkeys off TCA & Ativan in Oct 2014. Prescribed from 2011-2014

-All meds were Rxed off-label for an autoimmune illness.  It was a MISDIAGNOSIS, but I did not find out until AFTER meds caused damage.  All med tapers/cold turkeys directed by doctors 

-Nortriptyline May 2012 - Dec 2013. Cold turkey off nortrip & cold switched to desipramine

-Desipramine Jan 2014 - Oct. 29, 2014 (rapid taper/cold turkey)

-Lorazepam 1 mg per night during 2011
-Lorazepam 1 mg per month in 2012 (or less)

-Lorazepam on & off, Dec 2013 through Aug 2014. Didn't exceed 3x a week

-Lorazepam again in Oct. 2014 to help get off of desipramine. Last dose lzpam was 1 mg, Nov. 2, 2014. Immediate paradoxical reactions to benzos after stopping TCAs 

-First muscle/dystonia side effects started on nortriptyline, but docs too stupid to figure it out. On desipramine, muscle tremors & rigidity worsened

-Two weeks after I got off all meds, I developed full-blown TD.  Tardive dystonia, dyskinesia, myoclonic jerks ALL over body, ribcage wiggles, facial tics, twitching tongue & fingers, tremors/twitches of arms, legs, cognitive impairment, throat muscles semi-paralyzed & unable to swallow solid food, brain zaps, ears ring, dizzy, everything looks too far away, insomnia, numbness & electric shocks everywhere when I try to fall asleep, jerk awake from sleep with big, gasping breaths, wake with terrors & tremors, severely depressed.  NO HISTORY OF DEPRESSION, EVER. Meds CREATED it.

-Month 7: hair falling out; no vision improvement; still tardive dystonia; facial & tongue tics returned
-Month 8: back to acute, incl. Grand Mal seizure-like episodes. New mental torment, PGAD, worse insomnia
-Month 9: tardive dystonia worse, dyskinesia returned. Unable to breathe well due to dystonia in stomach, chest, throat
-Month 13: Back to acute, brain zaps back, developed eczema & stomach problems. Left leg no longer works right due to dystonia, meaning both legs now damaged
-7 years off: Huge improvements, incl. improved dystonia

Link to comment

Thank you WI, I didn't think this would happen but I had a hard time after writing that and your post helped a lot.  :)  You are very brave too, and strong.

 

And thank you everyone above for the nice compliments, I'm endeavouring to answer the posts here in order but I'm likely to get stuck again on my story.  And I'd like to get around to reading on all of your threads to see how y'all are doing. 

I am not a medical professional and nothing I say is a medical opinion or meant to be medical advice, please seek a competent and trusted medical professional to consult for all medical decisions.

 

Link to comment

Okay so I am stuck again.

 

I have to note here so I don't forget: I seem to be getting foggy-headed after eating.  I just ate some stew and my head was reasonably clear and now it's fogging up again.

 

Not sure what that means.

 

Also I am having an alarming issue with eczema, which just started a few months ago. Now it's spreading at a pretty rapid pace.  I don't know what to do about it, I know nothing about this.  I have other issues too, IBS and fatigue, this I am convinced is all connected.

 

I read that vit. D can help eczema and I am likely low as I got little sun this past summer.  And not enough food sources.  Possibly this explains some of the fatigue.

 

So my plan at the moment is to try vit. D and see if that doesn't help alleviate some of this.  If it doesn't, plan B is...I don't have one yet.

 

Okay so note over, I will try to get on with my story tomorrow. I just can't face it right now.

I am not a medical professional and nothing I say is a medical opinion or meant to be medical advice, please seek a competent and trusted medical professional to consult for all medical decisions.

 

Link to comment

Hellos unfolding sky. It was very brave of you to start telling your story. If writing any more is causing you stress and is causing symptoms to ramp up, I would leave it for the time being and concentrate on healing.

 

I'm sorry to hear about the eczema. How is your diet? I always read that no sugar, gluten or dairy is great for healing.

 

Take care.

The only way out is through.

 

Aug 2013 - Augmentin leading to akathisia

Sept-Nov 2013 - Citalopram 20mg, severe reaction, off at 5mg. Valium 4mg, prn

Oct 2013 - 5 zopiclone tablets, 7.5mg

End Nov 2013-end Feb 2014, Seroquel, top dose 150mg, off at 25mg

End Nov 2013-early march 2014, Zoloft 100mg top dose, off at 25mg

End Dec-2013-early April 2014, lorazepam 1mg prn

April 3rd 2014 zoloft 5mg for a few days. 18/4/14 - zoloft, 1mg. Came off at 0.35 mg,14th June 2014

29 June 2014 - 1mg lorazepam, last ever

29 June 2014 - med free

Link to comment

Hellos unfolding sky. It was very brave of you to start telling your story. If writing any more is causing you stress and is causing symptoms to ramp up, I would leave it for the time being and concentrate on healing.

 

I'm sorry to hear about the eczema. How is your diet? I always read that no sugar, gluten or dairy is great for healing.

 

Take care.

 

Hi Winning! I hope a window is upon you.

 

I think I will take your advice and put aside finishing the story for now.  It is too much to look at at the moment.

 

My diet isn't great now, to be honest.  I don't know how that may be impacting all of this.  I had done a very strict diet for three years, which eliminated everything you listed, it was definitely helpful then but I am able to eat most things again and had started to. I am not sure how they may contribute to eczema.  I know very little about it.  The prospect of an elimination diet now is too much to even think about...but may be what I will have to do.  I have a suspicion that wheat is an issue. 

 

Take care,

 

US

I am not a medical professional and nothing I say is a medical opinion or meant to be medical advice, please seek a competent and trusted medical professional to consult for all medical decisions.

 

Link to comment

I will return to my story when I am up to it, so will move on to the other posts.

 

I don't know if the people who answered me years ago are still here, I think I saw summer but not sure about the other two, please excuse my failure to reply if you are, I got badly triggered trying to write out what happened to me then for a long time couldn't find my thread to even come back to try it.  Thank you all for posting, summer, Gem and Roads.  And of course Alto too!  Gem if you are still here I love your quote and Roads, c/t off FOUR drugs?  Oh my gosh.  I hope you are well wherever you are.

 

And summer maybe we should resurrect Spa of your Dreams. 

I am not a medical professional and nothing I say is a medical opinion or meant to be medical advice, please seek a competent and trusted medical professional to consult for all medical decisions.

 

Link to comment

I just found out something interesting, US. I put just your (username) into the search box on this site and your Intro topic was the LAST entry at the end of page 2. Doing it the way I suggested using google, it is the first entry on the page.

 

Here, I just found an excuse to bump your topic all the way from 2011 to the present.

 

Strange I wonder what that means..I know so little about how searches work. Thanks again for bumping me, I needed a kickstart! :)

I am not a medical professional and nothing I say is a medical opinion or meant to be medical advice, please seek a competent and trusted medical professional to consult for all medical decisions.

 

Link to comment

I totally get finding it too difficult to finish the story. I think that really is a good reason why we don't see more success stories. I think it's just to traumatising and triggering for people to revisit. I think it's good for you to focus on right now. You've come such a long way.

 

I don't know why but something's telling me to suggest aloe Vera juice to you. I have no idea why! Or possibly aloe Vera gel on the eczema. Just an idea..don't worry if it doesn't feel right.

 

I want to say a massive thank you for all the help you've given me.

 

Wishing you continued healing.

The only way out is through.

 

Aug 2013 - Augmentin leading to akathisia

Sept-Nov 2013 - Citalopram 20mg, severe reaction, off at 5mg. Valium 4mg, prn

Oct 2013 - 5 zopiclone tablets, 7.5mg

End Nov 2013-end Feb 2014, Seroquel, top dose 150mg, off at 25mg

End Nov 2013-early march 2014, Zoloft 100mg top dose, off at 25mg

End Dec-2013-early April 2014, lorazepam 1mg prn

April 3rd 2014 zoloft 5mg for a few days. 18/4/14 - zoloft, 1mg. Came off at 0.35 mg,14th June 2014

29 June 2014 - 1mg lorazepam, last ever

29 June 2014 - med free

Link to comment
  • Member

 

Strange I wonder what that means..I know so little about how searches work.

 

It just means that the built-in search facility on the site leaves a bit to be desired. Google is a bit more 'to the point' sometimes. I was just testing the difference betw the 2. But there are times all of the search engines refuse to search for an exact phrase. They throw in lots of inappropriate results so you won't be 'disappointed'.

What happened and how I arrived here: http://survivingantidepressants.org/index.php?/topic/4243-cymbaltawithdrawal5600-introduction/#entry50878

 

July 2016 I have decided to leave my story here at SA unfinished. I have left my contact information in my profile for anyone who wishes to talk to me. I have a posting history spanning nearly 4 years and 3000+ posts all over the site.

 

Thank you to all who participated in my recovery. I'll miss talking to you but know that I'll be cheering you on from the sidelines, suffering and rejoicing with you in spirit, as you go on in your journey.

Link to comment

Just read what I wrote..when I said it good for you to focus on right now, I didn't mean focus on the story, (I realised it could look this way), quite the opposite, I meant focus on the here and now and on your healing.

 

Look after yourself and I hope you feel better soon.

The only way out is through.

 

Aug 2013 - Augmentin leading to akathisia

Sept-Nov 2013 - Citalopram 20mg, severe reaction, off at 5mg. Valium 4mg, prn

Oct 2013 - 5 zopiclone tablets, 7.5mg

End Nov 2013-end Feb 2014, Seroquel, top dose 150mg, off at 25mg

End Nov 2013-early march 2014, Zoloft 100mg top dose, off at 25mg

End Dec-2013-early April 2014, lorazepam 1mg prn

April 3rd 2014 zoloft 5mg for a few days. 18/4/14 - zoloft, 1mg. Came off at 0.35 mg,14th June 2014

29 June 2014 - 1mg lorazepam, last ever

29 June 2014 - med free

Link to comment

I totally get finding it too difficult to finish the story. I think that really is a good reason why we don't see more success stories. I think it's just to traumatising and triggering for people to revisit. I think it's good for you to focus on right now. You've come such a long way.

 

I don't know why but something's telling me to suggest aloe Vera juice to you. I have no idea why! Or possibly aloe Vera gel on the eczema. Just an idea..don't worry if it doesn't feel right.

 

I want to say a massive thank you for all the help you've given me.

 

Wishing you continued healing.

Hi WT,

 

It is hard to revisit, though I didn't think it would be as bad as it was when I started writing it out.  I did write some of it down a long time ago so maybe I should just copy that here. I know at this point I'll miss many details if I don't do that.  I am impressed that you got your story publicized, I couldn't even handle that now let alone in a severe state.

 

About the aloe vera, that would fit, I've heard of it being used for IBS. Just looked it up for its use for eczema, seems it is used topically for that too.  I actually have been meaning to buy an aloe vera plant, we used to keep them but they all died.  Thanks for reminding me! :)   I may actually try the topical use.  Right now the eczema isn't bad in the sense it's itchy or anything but with it spreading I am worried where this is going. 

 

I feel bad for mentioning it though since so many are in worse situations.  I hope you are doing better. And no problem about helping you out, just paying forward what others did for me.  :)

 

Much healing to you,

 

US

I am not a medical professional and nothing I say is a medical opinion or meant to be medical advice, please seek a competent and trusted medical professional to consult for all medical decisions.

 

Link to comment

 

 

Strange I wonder what that means..I know so little about how searches work.

 

It just means that the built-in search facility on the site leaves a bit to be desired. Google is a bit more 'to the point' sometimes. I was just testing the difference betw the 2. But there are times all of the search engines refuse to search for an exact phrase. They throw in lots of inappropriate results so you won't be 'disappointed'.

 

 

Hi CW,

 

Ah okay, I get it.  I have had many times searching for things here where the search function seems to have meant for me not to be "disappointed" as you say, lol...Must know I like to read! lol

 

Hope you are doing well,

 

US

I am not a medical professional and nothing I say is a medical opinion or meant to be medical advice, please seek a competent and trusted medical professional to consult for all medical decisions.

 

Link to comment

Just read what I wrote..when I said it good for you to focus on right now, I didn't mean focus on the story, (I realised it could look this way), quite the opposite, I meant focus on the here and now and on your healing.

 

Look after yourself and I hope you feel better soon.

 

Thanks WT, take care of yourself too, no worries, I understood what you meant. :)

I am not a medical professional and nothing I say is a medical opinion or meant to be medical advice, please seek a competent and trusted medical professional to consult for all medical decisions.

 

Link to comment

Just adding a note to my thread so I don't forget.

 

Today I started vit. D, took a little less than a quarter of a 400 IU tablet. 

 

Not long after I had a nap, and had some prominent after-images going on when I closed my eyes.  However I slept really soundly and on waking my body didn't feel as heavy as it normally does.

 

I don't know if that means anything though as the weather just warmed up here and the warmer it gets the less achy I tend to feel.  May be from that.

I am not a medical professional and nothing I say is a medical opinion or meant to be medical advice, please seek a competent and trusted medical professional to consult for all medical decisions.

 

Link to comment
  • Member

I read some really fascinating stuff about D in early wd. It is actually a hormone and one website actually talked about how when it is low there may well be a valid physiological reason for it. Don't know if I can find it again. That search thing, ya know?

What happened and how I arrived here: http://survivingantidepressants.org/index.php?/topic/4243-cymbaltawithdrawal5600-introduction/#entry50878

 

July 2016 I have decided to leave my story here at SA unfinished. I have left my contact information in my profile for anyone who wishes to talk to me. I have a posting history spanning nearly 4 years and 3000+ posts all over the site.

 

Thank you to all who participated in my recovery. I'll miss talking to you but know that I'll be cheering you on from the sidelines, suffering and rejoicing with you in spirit, as you go on in your journey.

Link to comment

I read some really fascinating stuff about D in early wd. It is actually a hormone and one website actually talked about how when it is low there may well be a valid physiological reason for it. Don't know if I can find it again. That search thing, ya know?

 

Hi CW, do you mean that it would be a bad idea to supplement then?  I'd love to see the article if you come across it.  I didn't get much sun this past year so feel I probably am low and need it, took one today and am feeling a little better.  I was getting it from salmon but over time I'm getting more worried about how polluted salmon might be because of the meltdown in Japan.  So I'm running on like no D...lol

I am not a medical professional and nothing I say is a medical opinion or meant to be medical advice, please seek a competent and trusted medical professional to consult for all medical decisions.

 

Link to comment
  • Moderator Emeritus

D is unique bc it is a vitamin AND a hormone. It acts both ways in the body

*I'm not a doctor and don't give medical advice, just personal experience
**Off all meds since Nov. 2014. Mentally & emotionally recovered; physically not
-Dual cold turkeys off TCA & Ativan in Oct 2014. Prescribed from 2011-2014

-All meds were Rxed off-label for an autoimmune illness.  It was a MISDIAGNOSIS, but I did not find out until AFTER meds caused damage.  All med tapers/cold turkeys directed by doctors 

-Nortriptyline May 2012 - Dec 2013. Cold turkey off nortrip & cold switched to desipramine

-Desipramine Jan 2014 - Oct. 29, 2014 (rapid taper/cold turkey)

-Lorazepam 1 mg per night during 2011
-Lorazepam 1 mg per month in 2012 (or less)

-Lorazepam on & off, Dec 2013 through Aug 2014. Didn't exceed 3x a week

-Lorazepam again in Oct. 2014 to help get off of desipramine. Last dose lzpam was 1 mg, Nov. 2, 2014. Immediate paradoxical reactions to benzos after stopping TCAs 

-First muscle/dystonia side effects started on nortriptyline, but docs too stupid to figure it out. On desipramine, muscle tremors & rigidity worsened

-Two weeks after I got off all meds, I developed full-blown TD.  Tardive dystonia, dyskinesia, myoclonic jerks ALL over body, ribcage wiggles, facial tics, twitching tongue & fingers, tremors/twitches of arms, legs, cognitive impairment, throat muscles semi-paralyzed & unable to swallow solid food, brain zaps, ears ring, dizzy, everything looks too far away, insomnia, numbness & electric shocks everywhere when I try to fall asleep, jerk awake from sleep with big, gasping breaths, wake with terrors & tremors, severely depressed.  NO HISTORY OF DEPRESSION, EVER. Meds CREATED it.

-Month 7: hair falling out; no vision improvement; still tardive dystonia; facial & tongue tics returned
-Month 8: back to acute, incl. Grand Mal seizure-like episodes. New mental torment, PGAD, worse insomnia
-Month 9: tardive dystonia worse, dyskinesia returned. Unable to breathe well due to dystonia in stomach, chest, throat
-Month 13: Back to acute, brain zaps back, developed eczema & stomach problems. Left leg no longer works right due to dystonia, meaning both legs now damaged
-7 years off: Huge improvements, incl. improved dystonia

Link to comment

I think someone told me it was a steroid? Not sure.  Or maybe that it coverts into a steroid?

I am not a medical professional and nothing I say is a medical opinion or meant to be medical advice, please seek a competent and trusted medical professional to consult for all medical decisions.

 

Link to comment
  • Moderator Emeritus

I found this blurb about vitamin D, but didn't see anything about it being a steroid:

 

http://www.dummies.com/how-to/content/what-is-vitamin-d-and-how-does-it-work.html

*I'm not a doctor and don't give medical advice, just personal experience
**Off all meds since Nov. 2014. Mentally & emotionally recovered; physically not
-Dual cold turkeys off TCA & Ativan in Oct 2014. Prescribed from 2011-2014

-All meds were Rxed off-label for an autoimmune illness.  It was a MISDIAGNOSIS, but I did not find out until AFTER meds caused damage.  All med tapers/cold turkeys directed by doctors 

-Nortriptyline May 2012 - Dec 2013. Cold turkey off nortrip & cold switched to desipramine

-Desipramine Jan 2014 - Oct. 29, 2014 (rapid taper/cold turkey)

-Lorazepam 1 mg per night during 2011
-Lorazepam 1 mg per month in 2012 (or less)

-Lorazepam on & off, Dec 2013 through Aug 2014. Didn't exceed 3x a week

-Lorazepam again in Oct. 2014 to help get off of desipramine. Last dose lzpam was 1 mg, Nov. 2, 2014. Immediate paradoxical reactions to benzos after stopping TCAs 

-First muscle/dystonia side effects started on nortriptyline, but docs too stupid to figure it out. On desipramine, muscle tremors & rigidity worsened

-Two weeks after I got off all meds, I developed full-blown TD.  Tardive dystonia, dyskinesia, myoclonic jerks ALL over body, ribcage wiggles, facial tics, twitching tongue & fingers, tremors/twitches of arms, legs, cognitive impairment, throat muscles semi-paralyzed & unable to swallow solid food, brain zaps, ears ring, dizzy, everything looks too far away, insomnia, numbness & electric shocks everywhere when I try to fall asleep, jerk awake from sleep with big, gasping breaths, wake with terrors & tremors, severely depressed.  NO HISTORY OF DEPRESSION, EVER. Meds CREATED it.

-Month 7: hair falling out; no vision improvement; still tardive dystonia; facial & tongue tics returned
-Month 8: back to acute, incl. Grand Mal seizure-like episodes. New mental torment, PGAD, worse insomnia
-Month 9: tardive dystonia worse, dyskinesia returned. Unable to breathe well due to dystonia in stomach, chest, throat
-Month 13: Back to acute, brain zaps back, developed eczema & stomach problems. Left leg no longer works right due to dystonia, meaning both legs now damaged
-7 years off: Huge improvements, incl. improved dystonia

Link to comment

I found this blurb about vitamin D, but didn't see anything about it being a steroid:

 

http://www.dummies.com/how-to/content/what-is-vitamin-d-and-how-does-it-work.html

 

Hey thanks for this WI, I didn't know it came in plant form. I always wondered if it did, I read that some plants have it and I thought that wasn't true.

 

It also raises a question, I wonder what the blood test for D measures exactly?  As from the explanation it sounds like your kidneys and liver have to work well to produce the form that you need...if they aren't working getting sun or taking supplements or food sources isn't going to work well. 

 

I could swear I have an issue with my kidneys relating to drugs as I look like I retain a bit of water.  No tests I have had show anything though (that I am aware of.) 

 

I didn't get enough sun last summer so the D issue would be partly that but maybe there is more going on.

 

So far my D experiment is going okay though, I am feeling a bit better.

 

I hope you are okay, will come on over to check on you in a second.

 

Take care,

 

US

I am not a medical professional and nothing I say is a medical opinion or meant to be medical advice, please seek a competent and trusted medical professional to consult for all medical decisions.

 

Link to comment
  • Moderator Emeritus

Are you able to be in the sun without any problems? These meds gave me sun sensitivity while I was on them, but it is great to know that you DO go in the sun. Well, not last summer, as you said, but it sounds like generally you can go into sun, right?

*I'm not a doctor and don't give medical advice, just personal experience
**Off all meds since Nov. 2014. Mentally & emotionally recovered; physically not
-Dual cold turkeys off TCA & Ativan in Oct 2014. Prescribed from 2011-2014

-All meds were Rxed off-label for an autoimmune illness.  It was a MISDIAGNOSIS, but I did not find out until AFTER meds caused damage.  All med tapers/cold turkeys directed by doctors 

-Nortriptyline May 2012 - Dec 2013. Cold turkey off nortrip & cold switched to desipramine

-Desipramine Jan 2014 - Oct. 29, 2014 (rapid taper/cold turkey)

-Lorazepam 1 mg per night during 2011
-Lorazepam 1 mg per month in 2012 (or less)

-Lorazepam on & off, Dec 2013 through Aug 2014. Didn't exceed 3x a week

-Lorazepam again in Oct. 2014 to help get off of desipramine. Last dose lzpam was 1 mg, Nov. 2, 2014. Immediate paradoxical reactions to benzos after stopping TCAs 

-First muscle/dystonia side effects started on nortriptyline, but docs too stupid to figure it out. On desipramine, muscle tremors & rigidity worsened

-Two weeks after I got off all meds, I developed full-blown TD.  Tardive dystonia, dyskinesia, myoclonic jerks ALL over body, ribcage wiggles, facial tics, twitching tongue & fingers, tremors/twitches of arms, legs, cognitive impairment, throat muscles semi-paralyzed & unable to swallow solid food, brain zaps, ears ring, dizzy, everything looks too far away, insomnia, numbness & electric shocks everywhere when I try to fall asleep, jerk awake from sleep with big, gasping breaths, wake with terrors & tremors, severely depressed.  NO HISTORY OF DEPRESSION, EVER. Meds CREATED it.

-Month 7: hair falling out; no vision improvement; still tardive dystonia; facial & tongue tics returned
-Month 8: back to acute, incl. Grand Mal seizure-like episodes. New mental torment, PGAD, worse insomnia
-Month 9: tardive dystonia worse, dyskinesia returned. Unable to breathe well due to dystonia in stomach, chest, throat
-Month 13: Back to acute, brain zaps back, developed eczema & stomach problems. Left leg no longer works right due to dystonia, meaning both legs now damaged
-7 years off: Huge improvements, incl. improved dystonia

Link to comment

Are you able to be in the sun without any problems? These meds gave me sun sensitivity while I was on them, but it is great to know that you DO go in the sun. Well, not last summer, as you said, but it sounds like generally you can go into sun, right?

 

Hi WI, yes, I can go out in the sun. I just didn't go out that much this summer.  I had light sensitivity early in withdrawal as I came off benzos but that's gone. 

I am not a medical professional and nothing I say is a medical opinion or meant to be medical advice, please seek a competent and trusted medical professional to consult for all medical decisions.

 

Link to comment
  • Moderator Emeritus

"Don't blame it on the sunshine

Don't blame it on the moonlight

Don't blame it on the good times

Blame it on the boogie"

 

*I'm not a doctor and don't give medical advice, just personal experience
**Off all meds since Nov. 2014. Mentally & emotionally recovered; physically not
-Dual cold turkeys off TCA & Ativan in Oct 2014. Prescribed from 2011-2014

-All meds were Rxed off-label for an autoimmune illness.  It was a MISDIAGNOSIS, but I did not find out until AFTER meds caused damage.  All med tapers/cold turkeys directed by doctors 

-Nortriptyline May 2012 - Dec 2013. Cold turkey off nortrip & cold switched to desipramine

-Desipramine Jan 2014 - Oct. 29, 2014 (rapid taper/cold turkey)

-Lorazepam 1 mg per night during 2011
-Lorazepam 1 mg per month in 2012 (or less)

-Lorazepam on & off, Dec 2013 through Aug 2014. Didn't exceed 3x a week

-Lorazepam again in Oct. 2014 to help get off of desipramine. Last dose lzpam was 1 mg, Nov. 2, 2014. Immediate paradoxical reactions to benzos after stopping TCAs 

-First muscle/dystonia side effects started on nortriptyline, but docs too stupid to figure it out. On desipramine, muscle tremors & rigidity worsened

-Two weeks after I got off all meds, I developed full-blown TD.  Tardive dystonia, dyskinesia, myoclonic jerks ALL over body, ribcage wiggles, facial tics, twitching tongue & fingers, tremors/twitches of arms, legs, cognitive impairment, throat muscles semi-paralyzed & unable to swallow solid food, brain zaps, ears ring, dizzy, everything looks too far away, insomnia, numbness & electric shocks everywhere when I try to fall asleep, jerk awake from sleep with big, gasping breaths, wake with terrors & tremors, severely depressed.  NO HISTORY OF DEPRESSION, EVER. Meds CREATED it.

-Month 7: hair falling out; no vision improvement; still tardive dystonia; facial & tongue tics returned
-Month 8: back to acute, incl. Grand Mal seizure-like episodes. New mental torment, PGAD, worse insomnia
-Month 9: tardive dystonia worse, dyskinesia returned. Unable to breathe well due to dystonia in stomach, chest, throat
-Month 13: Back to acute, brain zaps back, developed eczema & stomach problems. Left leg no longer works right due to dystonia, meaning both legs now damaged
-7 years off: Huge improvements, incl. improved dystonia

Link to comment

Thanks WI for the uplifting song, I needed to groove a bit.  Music seems to be helping me a lot lately.

I am not a medical professional and nothing I say is a medical opinion or meant to be medical advice, please seek a competent and trusted medical professional to consult for all medical decisions.

 

Link to comment
  • Moderator Emeritus

All the talk of being in the sun reminded me that this song mentions sunshine! I'm glad it cheered you up. That's what I was hoping for!

*I'm not a doctor and don't give medical advice, just personal experience
**Off all meds since Nov. 2014. Mentally & emotionally recovered; physically not
-Dual cold turkeys off TCA & Ativan in Oct 2014. Prescribed from 2011-2014

-All meds were Rxed off-label for an autoimmune illness.  It was a MISDIAGNOSIS, but I did not find out until AFTER meds caused damage.  All med tapers/cold turkeys directed by doctors 

-Nortriptyline May 2012 - Dec 2013. Cold turkey off nortrip & cold switched to desipramine

-Desipramine Jan 2014 - Oct. 29, 2014 (rapid taper/cold turkey)

-Lorazepam 1 mg per night during 2011
-Lorazepam 1 mg per month in 2012 (or less)

-Lorazepam on & off, Dec 2013 through Aug 2014. Didn't exceed 3x a week

-Lorazepam again in Oct. 2014 to help get off of desipramine. Last dose lzpam was 1 mg, Nov. 2, 2014. Immediate paradoxical reactions to benzos after stopping TCAs 

-First muscle/dystonia side effects started on nortriptyline, but docs too stupid to figure it out. On desipramine, muscle tremors & rigidity worsened

-Two weeks after I got off all meds, I developed full-blown TD.  Tardive dystonia, dyskinesia, myoclonic jerks ALL over body, ribcage wiggles, facial tics, twitching tongue & fingers, tremors/twitches of arms, legs, cognitive impairment, throat muscles semi-paralyzed & unable to swallow solid food, brain zaps, ears ring, dizzy, everything looks too far away, insomnia, numbness & electric shocks everywhere when I try to fall asleep, jerk awake from sleep with big, gasping breaths, wake with terrors & tremors, severely depressed.  NO HISTORY OF DEPRESSION, EVER. Meds CREATED it.

-Month 7: hair falling out; no vision improvement; still tardive dystonia; facial & tongue tics returned
-Month 8: back to acute, incl. Grand Mal seizure-like episodes. New mental torment, PGAD, worse insomnia
-Month 9: tardive dystonia worse, dyskinesia returned. Unable to breathe well due to dystonia in stomach, chest, throat
-Month 13: Back to acute, brain zaps back, developed eczema & stomach problems. Left leg no longer works right due to dystonia, meaning both legs now damaged
-7 years off: Huge improvements, incl. improved dystonia

Link to comment
  • Moderator Emeritus

Looks like neither you nor I have been able to get ahold of Pug. I certainly hope everything is okay.

*I'm not a doctor and don't give medical advice, just personal experience
**Off all meds since Nov. 2014. Mentally & emotionally recovered; physically not
-Dual cold turkeys off TCA & Ativan in Oct 2014. Prescribed from 2011-2014

-All meds were Rxed off-label for an autoimmune illness.  It was a MISDIAGNOSIS, but I did not find out until AFTER meds caused damage.  All med tapers/cold turkeys directed by doctors 

-Nortriptyline May 2012 - Dec 2013. Cold turkey off nortrip & cold switched to desipramine

-Desipramine Jan 2014 - Oct. 29, 2014 (rapid taper/cold turkey)

-Lorazepam 1 mg per night during 2011
-Lorazepam 1 mg per month in 2012 (or less)

-Lorazepam on & off, Dec 2013 through Aug 2014. Didn't exceed 3x a week

-Lorazepam again in Oct. 2014 to help get off of desipramine. Last dose lzpam was 1 mg, Nov. 2, 2014. Immediate paradoxical reactions to benzos after stopping TCAs 

-First muscle/dystonia side effects started on nortriptyline, but docs too stupid to figure it out. On desipramine, muscle tremors & rigidity worsened

-Two weeks after I got off all meds, I developed full-blown TD.  Tardive dystonia, dyskinesia, myoclonic jerks ALL over body, ribcage wiggles, facial tics, twitching tongue & fingers, tremors/twitches of arms, legs, cognitive impairment, throat muscles semi-paralyzed & unable to swallow solid food, brain zaps, ears ring, dizzy, everything looks too far away, insomnia, numbness & electric shocks everywhere when I try to fall asleep, jerk awake from sleep with big, gasping breaths, wake with terrors & tremors, severely depressed.  NO HISTORY OF DEPRESSION, EVER. Meds CREATED it.

-Month 7: hair falling out; no vision improvement; still tardive dystonia; facial & tongue tics returned
-Month 8: back to acute, incl. Grand Mal seizure-like episodes. New mental torment, PGAD, worse insomnia
-Month 9: tardive dystonia worse, dyskinesia returned. Unable to breathe well due to dystonia in stomach, chest, throat
-Month 13: Back to acute, brain zaps back, developed eczema & stomach problems. Left leg no longer works right due to dystonia, meaning both legs now damaged
-7 years off: Huge improvements, incl. improved dystonia

Link to comment

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...

Important Information

Terms of Use Privacy Policy