Arbor: dealing with PAWS

[arbor]

Dear @Winner51  Forgive me for taking a while to respond.  I'm overwhelmed with my home and work responsibilities while dealing with w/d.  Thank you for sharing more about your situation and how you're coping.  I turned red too while on AD's, flushing especially, but also in striations up and down my arms and legs.  The flushing is better.   My skin, though not in flull-fledged psoriasis, is mottled, thin, and streaked--really not right.  I attribute it to the possibility of ongoing inflammation.

What I'm focusing on now is to find if there are non-drug ways to reduce inflammation without worsening the w/d, or causing further rebound effects.  Studies showing that AD's (but not benzo's) lodge in the lipid rafts of plasma membranes.  However, upon w/d, they only leave the lipid rafts very slowly which upsets major signaling pathways, which is being suggested as playing a role in w/d symptoms.  (Here are a study and article: Antidepressants Accumulate in Lipid Rafts ... - NCBI   › articles › PMC5025664   Antidepressant Withdrawal Syndrome Linked to Membrane ...https://www.genengnews.com › news › antidepressant-...)

 

Here is an example of studies on autoimmune diseases in conjunction with lipid rafts:  Lipid rafts in immune signalling: current progress and ... - NCBI  › articles › PMC4981613

 

My assumption is that some of us are more prone to autoimmune diseases and that this can be perhaps related (again, for some of us) to various viruses (among other possibilities) we've been exposed to.  For instance, I had a very bad time with mononucleosis (Epstein-Barr) as a kid.  These are just conjectures.  My investigations were prompted by my acute reactions to the second Covid 19 vaccine while still in AD w/d.  I'm not eager to make ill-founded hypothesese.  For right now I'm interested in what I can learn about autoimmune diseases and whether non-drug methods that work for them might possibly help even in a small way with the symptoms of AD w/d.   

 

I'm really curious about your visit to the holistic doc and whether you thought it was helpful.  Please keep in touch.  Tomorrow beings my 36th month.  

Thinking of you 💜💜🙏💜

 

 

 

 

 

 

 

Jun 2, 2021 — Previous research has demonstrated that antidepressant drugs collect gradually in cholesterol-rich membrane structures called lipid rafts. When ...

 

 

 

by SJ Erb · 2016 · Cited by 38 — We hypothesized that antidepressants accumulate gradually in lipid rafts and modulate the distribution of Gαs in the membrane. Results in this study are ...

[Winner51]

No apologies needed. I understand. Its like moving a mountain sometimes.

 

Again, I thank you for the wealth of information.  Those articles seem to support what I was thinking. I’ve also wondered if the drugs I take for my RA somehow interfere with the w/d process. I take naproxen which is an NSAID and hydroxychloroquine which suppresses the immune system. The NSAID reduces the pain from inflammation which makes me think it could contribute to the whole inflammatory response in the w/d process. Also, hydroxychloroquine has been shown to induce a inflammatory skin response with psoriasis.  The drug was originally created to fight malaria and apparently in some people it causes skin inflammation. 
 

I wanted to ask you about another symptom that’s reared it’s ugly head again… The insomnia has returned.😔. Two nights last week I only had two to three hours sleep.  During my first year of w/d I suffered from it and some nights I wouldn’t sleep an hour.  Back then it was straight insomnia.  Now the insomnia is triggered by obsessive thoughts and my mind not shutting off. I’ve had this on and off the whole time but I could play mind games and divert my thoughts and usually calm down and get sleep.  Now nothing seems to work.  My brain is like an unruly child that will not mind no matter what.  I will think the same thoughts over and over and I will solve all of the worlds problems in the middle of the night.  Have you experienced this and if so do you have any techniques to calm your mind?  The only thing that works on occasion for me is to turn the TV on with the sound on 1 and put my black out shade on my face.  The noise from the TV will sometimes distract my mind and I’m able to drift off to sleep.

 

I will def keep you informed on the holistic doc.  It will be a while before I make that visit. I went to the dermatologist about what I thought was psoriasis and it was actually eczema.  I feel sure it was brought on by w/d as I’ve never had it before.  She prescribed me steroid cream which I’ve taken for 10 days.  The steroid worked thus far but the doc said if it comes back to make another appt.  A friend who has a bad case of eczema has used a non-steroidal cream and it’s the only thing that knocked out her eczema. If my eczema returns (just finished my 10 day dosage) then I will go back to the dermatologist for this Epi Ceram cream ( this supposedly can be used for all kinds of skin inflammation and it’s not cheap at $500 but some ins will cover it).  If the cream doesn’t work, then at that point I will make an appt with the holistic doc and discuss the skin issue with her as well as the w/d syndrome.  At any rate I will make the appt with the holistic doc at some point but I want to wait to see how things turn out with the eczema to keep from making multiple visits. 

I hope your days get easier! Thanks so much for all the great info!  Respond whenever you have time and feel up to it. 🙏
 

[deg1979]

I, too, am wondering about the inflammation link and AD WD/adverse reactions. 

 

I had mono as an 18 year old (horrible case of it with cytomegalovirus--CMV--at the same time). I haven't had any flare ups since then, but I seem to have a really sensitive system that tends to overreact to infections and medications. I've also developed several types of allergies as an adult. My skin allergies have been worse since my adverse reaction & symptoms from Lexapro. 

 

My psychiatric provider prescribed hydroxyzine to help me manage anxiety. It's an antihistamine, but I have been afraid to take it simply because I don't trust medications that drs say are "harmless" after my Lexapro experience. Long story short, I am taking it willingly, because it does help, but I am trying to learn more about how and why it helps in order to make sure I don't complicate my recovery. 

 

I found this interesting article on hydroxyzine use in autism. Their theory seems to rest, in part, on hydroxyzine's anti-inflammatory response in the brain. 

 

https://www.scitechnol.com/peer-review/h1r-antagonists-for-brain-inflammation-and-anxiety-targeted-treatment-for-autism-spectrum-disorders-VmP2.php?article_id=4284

[arbor]

Thank you for your update, @Winner51.  I'll respond more later.  In the meantime, we're in sync with the return to sleeplessness.  I like your solution with the TV, and my brain is definitely a wayward child as well!  Here's this article for what it's worth:

Epi Ceram cream:    a ceramide-dominant, triple-lipid barrier repair formulation (EpiCeram), which designed to correct the lipid-biochemical abnormalities in atopic dermatitis (AD) in comparison to fluticasone propionate cream.

 

Randomized Controlled Trial

 

J Drugs Dermatol

. 2011 May;10(5):531-7.

An over-the-counter moisturizer is as clinically effective as, and more cost-effective than, prescription barrier creams in the treatment of children with mild-to-moderate atopic dermatitis: a randomized, controlled trial

Drew W Miller 1, Sarah B Koch, Brad A Yentzer, Adele R Clark, Jenna R O'Neill, Julie Fountain, Teresa M Weber, Alan B Fleischer Jr

Affiliations expand

• PMID: 21533301

Abstract

Background: Atopic dermatitis (AD) is a prevalent skin disorder with significant cost of treatment. Several prescription device moisturizers have been approved by the FDA to treat AD but are significantly more expensive than well-crafted over-the-counter (OTC) moisturizers. No studies have been performed to compare both the clinical efficacy and cost-efficacy of these prescription devices to OTC moisturizers.

Purpose: The purpose of this study is to compare the clinical efficacy and cost-efficacy of a glycyrrhetinic acid-containing barrier repair cream (BRC-Gly, Atopiclair®), a ceramide-dominant barrier repair cream (BRC-Cer, EpiCeram®) and an OTC petroleum-based skin protectant moisturizer (OTC-Pet, Aquaphor Healing Ointment®) as monotherapy for mild-to-moderate AD in children.

Methods: Thirty-nine patients, age 2-17 years, with mild-to-moderate AD were randomized 1:1:1 to receive one of three treatments-BRC-Gly, BRC-Cer or OTC-Pet-with instructions to apply the treatment three times daily for three weeks. Disease severity and improvement was assessed at baseline and on days 7 and 21.

Results: No statistically significant difference for any efficacy assessment was found between the three groups at each time point. The OTC-Pet was found to be at least 47 times more cost-effective than BRC-Gly or BRC-Cer.

Limitations: The relatively small sample size of 39 subjects was not sufficient to establish OTC-Pet as superior treatment in AD.

Conclusions: OTC-Pet is as effective in treating mild-to-moderate AD as both BRC-Gly and BRC-Cer and is at least 47 times more cost-effective.

Name of registry: II-AF-ATD-Aquaphor, Comparing the Efficacy and Cost-Effectiveness of Aquaphor to Atopiclair and EpiCeram in Children with Mild to Moderate Atopic Dermatitis. REGISTRATION IDENTIFIER: NCT01093469.

[arbor]

Thank you, @deg1979--I'll take a look at this article.

Best to you,

Arbor

[Oaktree1]

Hi @arbor

 

Just checking in on you.  I hope you are ok.

 

I've been reading a bit about your skin.  I found Aveeno Dermexa Balm for Hands very helpful for me - I went through 30 difference products when the eczema was really bad.  It started in March 2018 and was very bad for a year and a half as I came off Cymbalta.  I take Lutein  the amino acid which I found helpful specifically for the eczema

 

Oaktree1.  

[Winner51]

I am hanging in there.  Thanks for the info on the cream!  Fortunately, the steroid cream took care of the eczema and it hasn’t come back yet.🙏. I am having all kinds of skin issues aside from the eczema flare.  I’ve had to stop exercising because of it.

 

How is your Mirt taper going?  It’s a nasty drug.  I’ve been off it  I believe 27 mos now.  

[arbor]

Thank you @Oaktree1--This is helpful.  I'll try both of these 🙂  

Also, thank you for contacting me--it's good to hear from you.  I've been wondering how you're doing.

I need to update here, and let people know that I'm needing to focus on making sure my livelihood isn't lost, as well as my close connections, while dealing with ongoing symptoms of stopping Prozac.  The worst for me is the wave and window pattern with insomnia, followed by frazzled nerves.  This is my 36th month and I can hardly describe how exhausted I am.  What I wish is that nobody in this world would have to go through this again.  

Since you mentioned books earlier on your thread, I wonder if you've read "When Things Fall Apart," by Pema Chodron.  I find it so helpful--especially the humanity and warmth of her tone.

Please know I support you as you, too, find your way, one step at a time, toward freedom from these drugs and w/d.  I often can't keep up with others if I'm doing activities with them, but when I tell them what's happening, their kindness and patience are a blessing 🕊️

What we're going through is so very challenging.  Thank you, again, OT, for being there.

Arbor 

[arbor]

Hi @Winner51--

Good to hear from you.  I've been wanting to share with you something else that I've been trying--and that's icing, actually.   The more opportunity I have to put cold packs on my arms and legs where the psoriasis or stripes show up, the better I've been doing.  I've also been using them on my salivary glands at night when the dry mouth often wakes me (from the fractured sleeps I get).  Anyway, I do think it's helping for right now.  (Everything changes so much--)  Using cold packs on my ear is also helping the tinnitus.

I'm actually in w/d from Zoloft/Prozac, though I understand that the differences among the AD's are not that big.  Their main mechanisms of functioning are the same, or similar.

 

56 minutes ago, Winner51 said:

Fortunately, the steroid cream took care of the eczema and it hasn’t come back yet.🙏.

I'm so happy to hear this 🎈

 

Keep me informed!

Arbor

[Oaktree1]

@arbor

 

Thanks  for replying - I am very relieved to hear from you even if things are very tough.   I am glad you are focusing on the important things in life like your job and close connections in addition to dealing with ongoing withdrawal. 

 

I am going to make a small shout out here to Utrogestan (which you probably already know about - basically a progesterone tablet I have been taking at night) which definitely helps with my sleep from the moment I first took it in September 2019.   Not that it means that I sleep soundly but it meant that I got a few hours as opposed to the 1-2 or rather zero hours I was getting at the end and after the Cymbalta taper and when I had cut the Mirt previously down to 3.75mg.  

 

Anyway it is another suggestion from someone else with severe insomnia - it definitely helped me.  I don't know whether it would be possible for you to take it so apologise in advance if this is the case.  I think it is very annoying when people suggest things that you are unable to do or that you have already tried. 

 

Thanks for the book recommendation - I will definitely add that one to my list.  I am so enjoying 'The Book of Woe' which you previously recommended that I am eeking it out for as long as possible.  Greenberg is so wry in exposing the detailed absurdity involved in mapping emotions to create 'pathologies' that he lightens the horror at all.

 

Anyway I am glad to hear that you are still in the land of the living.  

 

Oaktree

 

[Winner51]

Oops!  I was reading Oaktrees info.  Sorry about that.

 

Thanks for the info! I will gives the ice a try. Yes, the fractured sleep is beyond annoying😏. It was 2am for me this morning and no return to sleep.  Yuck!!! Will this ever end…

[Oaktree1]

1 hour ago, Winner51 said:

I am hanging in there.  Thanks for the info on the cream!  Fortunately, the steroid cream took care of the eczema and it hasn’t come back yet.🙏. I am having all kinds of skin issues aside from the eczema flare.  I’ve had to stop exercising because of it.

 

How is your Mirt taper going?  It’s a nasty drug.  I’ve been off it  I believe 27 mos now.  

Hi Winner 51,

 

No probs.  It is great to hear that the steroid cream actually worked  for the eczema.  It's such a nightmare of a condition.  No steroid I took and I took loads actually helped except Fucibet (sold in Europe)

 

Congrats on getting off the Mirt - that's a big achievement.  I read so few success stories with that drug.  

 

I am only at the foothills of Mirt taper and I am going slower than a snails pace - I know it only gets tougher the lower you go.  At the moment I am managing - not that I am full of joy in the world but I am functioning and trying to watch my emotional reactions.   

 

Oaktree 

[arbor]

Dear @Oaktree1--

 

I've never heard of Utrogestan.  Thanks so much for your recommendation.  Glad too, that you're liking 'The Book of Woe'.  Isn't it validating to find out that what we've sensed to be Gaslighting--is--Gaslighting?  And then laughter--there's hardly a better medicine!

Glad you're there,

Arbor💜

[Onmyway]

On 11/16/2021 at 9:10 PM, arbor said:

The worst for me is the wave and window pattern with insomnia, followed by frazzled nerves.  This is my 36th month and I can hardly describe how exhausted I am.  What I wish is that nobody in this world would have to go through this again.  

Dear @arbor ,

I am so sorry you are dealing with the insomnia as well and the subsequent exhaustion. It feels brutal, doesn't it? 

I am hoping that you get some respite soon. 

I will try your ice-pack idea for the tinnitus. For me it comes and goes together with sound sensitivity in general. 

 

Sending you hugs and healing thoughts, 
OMW

[arbor]

Dear @OnmywayThank you for your kind words.  They really do help🌞💗🕊️

Hope all is going well with your house finding--

Arbor

[getofflex]

Hey @arborhow are you doing these days?  I hope you are doing OK.  I know how challenging it is to deal with insomnia, and the resulting exhaustion, etc.  I'm praying for you. 

[arbor]

Thank you @getofflex❤️

Things seem to get a little better, then the symptoms return in full force, so I'm rolling with the challenges as best I can.  Avoiding stress is the most helpful remedy I've found.  I appreciate all that you do, and send you healing wishes.  Your taper is getting right down there...🕊️

Arbor

 

[manymoretodays]

Hi there @arbor

And how has the last 24 hours gone for you?

Per your request and approval, and so that your Introduction/Journal is up to date, I'm going to move our private conversation, out here now.  Looks like I can do it split into 2 replies. 

So happy that you do feel fortified a bit.  Tomorrow a bit more, for sure.  Sending those healing vibes now.

 

Yesterday from you, 21 December 2021 9:39 am:

Forgive me, I don't want to post this and frighten others on site.  I can't function at the moment without having a panic attact.  This has gotten worse over the last week.  I'm afraid I'll break down.  Could you advise me about the possibility of reinstating neurontinin.  Would this be an option?  Thank you--

 

  

On 12/21/2021 at 10:07 AM, manymoretodays said:

Hugs Arbor......and I am so sorry to hear this.

I'll go ahead and copy your signature over to here, as it doesn't show up in reports.

And oh my, don't worry about frightening others......but, yes, it does sound like you are in sheer panic.....oh man, so sorry again.  Sending gentle, gentle comfort.  Slow breaths.  Easy does it.

Is anything going on in particular that you can attribute this too?

How long has it been going on, or feeling this severe and unmanageable?

Something/anything that raised your stress level?

Even expectations of self right now?  That will do it for me, at times....when I expect too much out of myself and just have too much going on.

Has your thyroid been checked lately?  I see the Levothyroxine listed.

......stoopid WD, it rears up nastily some times.

And then, gabapentin ( Neurontin), was your last psychoactive off? 

It looks like you finished tapering that in December 2019.

Do you have any calming techniques that might help right now?

 

I'm so sorry I'm not more familiar with your specifics.

Do you have any Neurotin on hand now?

I'd hold off, if it was me.  I did wind up licking Seroquel once when years off, or done tapering.  Had a bout of intense unrest feelings, like anxiety, panic.  So, it did happen to me as well.  And it did pass.

For right now, just hang tight, hold on......breathe, bathe if that helps, bundle yourself if that helps a bit too-or a weighted blanket.

And rooting for you.....I am. 

 

 

Zoloft: 1995 - 2015

Prozac: 2015 - 2018 (tapered from 40mg x day on July 31 to 30mg on August 31 to 20mg on September 31 to 10mg October 31 to 0mg on  December 15, 2018

Gabapentin: 2016 to 2019  (tapered from 300mg x day to 150mg on August 31, 2019 to 75mg on September 15 to 50mg on September 31 to 25ishmg on October 15 to 0mg on December 1, 2019

Enalapril: 2010 - 2019

Lipitor: 2017 -2017

Metformin: 2000 - 2020

Liothyronine: 2007 - 2019

Levothyroxine: 2000 - 

 

 

 

 

  

On 12/21/2021 at 11:03 AM, arbor said:

Thank you Manymoretodays, more than I can say--I'll just keep reading your words over and over.

  

On 12/21/2021 at 11:27 AM, manymoretodays said:

Okay.  There there....I'm glad it helped.

Why I even had Seroquel around still is a mystery.....I had come off that years before.

And I hated that drug!

It'll feel lessened soon, this huge wave you are having.

Maybe even time it a bit.....the worst of the panic........and really pay attention to when you notice a decrease in intensity. 

Then notice what you were doing or had done prior to the decrease in intensity. 

That way you'll begin to gain confidence that coping tools work, and you can use the same coping tool again....with conviction.

 

Oh sweetie.  There there.  I swear sometimes I think there is just some bad energy in the air or something sometimes......it can be such a tension packed time of year for some.  My tension comes in little bursts now.....and I just need to remind myself that everything will be fine......and it doesn't need to be perfect.

 

I don't get perfect at all.  I mean I love imperfection.  Yet sometimes......oh yes.......I have to work at staying calm and collected too.  I think we all do.

 

Okay.....another ramble for you.  I'm off to the library and to get another Covid test.  LOL, I kid you not......I am probably fine.......just have had so darn many contacts and exposures and travel and all.......I just want to be sure.  You may laugh.  And I'm not laughing at Covid, no not at all.  Just myself.....not in a bad way either. 

 

There, there, you got this arbor.......cool as a cucumber.......hugs.

  

On 12/21/2021 at 12:30 PM, Altostrata said:

@arbor when did this start? Has anything changed lately?

 

What times of day do you take your drugs, with their dosages? Is the anxiety worse at any particular times of day?

 

Edited December 23, 2021 by manymoretodays
slight, clarity, my intro. to the topic and quotes

[manymoretodays]

Continued, our group conversation:

  

On 12/21/2021 at 12:55 PM, arbor said:

Thank you--I only take thyroxine currently, after too quick a taper off of Prozac followed by Neurontinin.  This is my 37th month.  I take the recommended supplements.  I had a recent breakdown after having to mediate with an unsympathetic neighbor who has taken up learning to play a grand piano.  The wall is thin.  The building is being renovated with a great deal of drilling into concrete.  I haven't been able to find an alternative place to move.  I'm unable to eat much or function.  I'm shaking, hyperventilating, not sleeping.  This is the 5th day.  I've had 2 heart attacks connected to AD, and am frightened mostly of losing my mind and kicking down my neighbor's door, or starting to scream.  I listen to breathing exercises as much as I can.  I have sound cancelling devices which are helping.  My closest people are out of town.  Anyone I would turn to here would take me immediately to ER.  It's at night that I become suicidal.  I thought I read that Alto had used neurontinin during w/d, but can't locate where that is.  My skills are not with me.  With immeasuable gratitude--

  

On 12/21/2021 at 12:58 PM, arbor said:

And to answer specifically, the intense anxiety is worse at midnight through to 5AM, then improves with green tea, holds through to noon and begins to increase.  I take the thyroxine around 2PM.

  

On 12/21/2021 at 3:04 PM, Altostrata said:

The first thing I would do is get your thyroid regimen checked, you may be taking too much thyroxine. It can be activating.

 

Otherwise, it sounds like you have environmental stress and neighbor conflict that are triggering your symptoms. I can imagine you are at your wits' end to find another place to live. How about house-sitting in a quieter neighborhood for a while?

 

I did not use Neurontin. I took a tiny amount of pregabalin for sleep for a while. 

  

On 12/21/2021 at 5:01 PM, Frogie said:

I take levothyroxine and the Dr had me on too high of a dose in the beginning. I had a lot of the same symptoms you are having. After I had a full panel done, mine was cut in 1/2. I take it at 5 am and lay in bed for a half hour or so after taking it and do much better than I was.

 

I'm so sorry you're going through this. I hope you can get your living situation under control very soon. Can you stay at a friend's home at least through the holidays while they away? Just to regain some sanity levels.

 

I hope you feel better very soon. Know we are all here for you.

  

On 12/21/2021 at 5:04 PM, arbor said:

Thank you, Alto.  I will follow these suggestions.  Thank you for taking this time to help me.  I recognize you're busy and already doing so much for so many.  My best to you and Mmt on this Solstice.  May it be a peaceful, healthy one for both of you.

  

On 12/21/2021 at 6:16 PM, manymoretodays said:

Arbor, when are your closest people getting back in town?   

 

The ones who won't take you to the ER.

 

Sounds like it might be a great idea to get a thyroid panel done then.  Hopefully that won't be too involved.....I mean I hope not.

 

We're here, in and out all the time Arbor.  Keep us posted.

Are you sleeping the last few days??

 

And whenever.......we can move on out to your Introduction.......no pressure.  Just do a post there when you want to and @  me, when you feel okay about doing that.  I'm generally checking in at least once every couple of days, or every other day.

 

Almost time to sleep Arbor.......sleepytime........one thing about panic and such is that it IS exhausting after a certain point.  So hoping you can sleep a bit tonight.

 

Okay, nite, nite.

 

 

 

  

2 hours ago, arbor said:

All of this has been so fortifying.  More than thank you.  @Frogie--I spoke with the doctor today about getting the thyroid test.  

We can move this to my thread.  And I will also list this as complete.  Terrible to be so taken over--

 

[Oaktree1]

Hi Arbor,

I was very sad to hear how bad things have become for you.  I can relate to the distress caused by noise you cannot control.  I hope you find somewhere peaceful to live soon.  Don't know if this helps but hot milk and a smooth peanut butter sandwich I have found helpful for sleep.   Maybe once you are over this patch you could see whether you could ask an MD about the Utrogestan.  Maybe you already have and it was unsuitable so I apologise for bringing this up again if this is the case.   It is awful having to deal with unpleasant and unreasonable people when you cannot get through to them particularly when they are the cause of ongoing the distress.  I see that many of the moderators are in contact with you to help and probably know way more than I on these matters but my thoughts are with you through this time.

Oaktree.

[arbor]

Dear @Oaktree1--It is so good of you to post this support.  I'm still having a hard time with the setback of this episode.  The feeling of being unable to control the onslaught of despair and desperation unnerved me.  It left me unable to articulate or advocate for improvement without hyperventilating and heart palpitations.  I had thought I was improving, but this incident seemed to destroy any healing I'd made.  It was a worst symptom than any I'd experienced, even early on when I still had hope of an earlier recovery.  Recovery's now been so long for me, I don't know where I'm at.  I want so much for all of us to heal that going forward with mutual encouragement is the only path I can see.  Suggestions like yours make a big difference.  I love peanut butter, so I've started there!

You've come such a long way in reclaiming your life from the pharmaceutical industry.  I wish you peace and joy with the coming New Year.

Arbor💗

[Oaktree1]

Dear  @arbor,

 

What you have gone through in the last while appears to have been overwhelming - I can only offer your my sympathies.  It is awful what happens to people who are put on these drugs - awful. 

 

I wish you courage and peace until you come through this.   And I wish you rage too.  Don't let the money grubbing, shoddy, arrogant, power hungry participants of the pharmaceutical and psychiatric industry destroy you.  That's is what has kept me alive until now - I survived without any loving human contact at all during the worst periods.  It may not always keep me alive but it's kept me alive so far.   And rage is a legitimate response to those who hurt you when they advertised themselves as healers and helpers.

 

Do whatever it takes to get you through this period even if it means reinstating a small amount - whatever it takes.  I had my peanut butter this evening anyway - I am glad you like peanut butter.  
 

Oaktree 🙂

[Winner51]

Good morning Arbor.  I know you have been struggling.  I wanted to check in on you.  Are things getting any better for you?

[getofflex]

@arborI'm very sorry that you are going through this setback.  

On 12/24/2021 at 2:35 PM, arbor said:

The feeling of being unable to control the onslaught of despair and desperation unnerved me.  It left me unable to articulate or advocate for improvement without hyperventilating and heart palpitations.  I had thought I was improving, but this incident seemed to destroy any healing I'd made.  I

It may feel like you are back to square one, but I don't think so.  Do you remember the Rubik's cube analogy of brain healing?  When solving a Rubik's cube, we often have to go "backwards" to get to the final solution.  It's a circuitous, round about process.  Please hang in there - this too shall pass.  Do you ever listen to Baylissa?     

[arbor]

Dear @Oaktree1--Thank you for your words of encouragement🌞  My "health" is returning--i.e. I'm returning to the state of recovery I was in prior to that noise/crash.  Shaky, however.  Hope you're doing ok, and that your housing resolves more comfortably.

Glad you're there,

Arbor

[arbor]

Hi @Winner51--It's so good of you to stop by.  Your support means a lot.  My autoimmune issues flared up, which I suppose, isn't surprising.  The worse remaining now are dry mouth and the red streaks down my inner forearms.  I'm hoping they'll dissipate soon.

I hope you're plugging along, with symptoms gradually improving.

May the New Year bring us healing!

Arbor 

[arbor]

Thank you @getofflex!  The Rubik's cube analogy helps a lot🌈  Plus, I really appreciate your kind support.  It seems I'm driving on bare rims, and crash easily.  (Luckily, I've given up real driving altogether for the time being--) Yes, the progress I'd made is slowly returning.  Thank you for the recommendation to listen to Baylissa.  

I hope you are doing better as the New Year gets under way.  I just read an article about painting still lifes (and how hard they can be) which put me in mind of your lovely flower paintings.

Take care of yourself🙏

Arbor

[almuPA]

Hello, dear @arbor,

 

I am sorry I havent read before everything that you have gone through. 

I obviously dont have wiser words than the mods in here, but I just wanted to let you know that you are not alone, we are here for you. 

 

I agree with gettoglex, I dont think you are back to square one. This is "just" a setback, which it sucks and we know how debilitating it can be, but unfortunately is part of WD. All the progress you've done until now is still there. Not only that, but all the skills you've learnt along the way are there, too. 

 

I am curious about how is the situation with your neighbor, but I understand if you dont want to talk about it. 

 

On 1/2/2022 at 8:13 PM, arbor said:

I'm returning to the state of recovery I was in prior to that noise/crash. 

That is so good to read😃 I hope that little by little you can find your way again. And I really hope this new year is the year of full recovery for a lot of us.

 

I send you a big hug.

[arbor]

Thank you @almuPA🙏

I have to say, I cried when reading your words of support

9 hours ago, almuPA said:

you are not alone, we are here for you

Nobody, I think, can really comprehend how devastating these drugs and their w/d, are, except those of us who have--or are--going through this.

I don't have a "robust" ego-self to meet the press of the world right now.  Therefore, I asked for a mediator to guide me in negotiating issues with my neighbor.  This neighbor has had other personal issues with people who live here, but I see little chance of her becoming aware of others, or especially, their needs.  She's used to getting what she wants.  I accept that her attitude as well as piano-pounding are triggering to me.  To avoid escalation, I'm letting the mediator step in, and am working on living with the compromises (which the neighbor tries regularly to break).  It's hard to find housing here as people are flooding into the state.  If I were more comfortable driving, I'd have more flexibility.  So, for right now, I'm concentrating on healing so that I don't make rash decisions as I contemplate a better living environment.  There are good aspects and people in my life.  Also I'd like to share with all of us the change that's come about in my doctor.  To my surprise, when I saw her a few days ago, she expressed acknowledgement and compassion re my w/d situation.  She now seems to recognize AD w/d and changed her position from aloof authority to kind human being.  It seems such a major shift on her part, that I draw inspiration from it.

 

almuPA, I know you have been going through so much.  I so look forward to your being free of this suffering.  

I send you hugs in return,

Arbor💜

[arbor]

@almuPA I'm not sure if I flagged you properly in the above message.

Thinking of you,

Arbor

[almuPA]

On 1/4/2022 at 9:36 PM, arbor said:

To my surprise, when I saw her a few days ago, she expressed acknowledgement and compassion re my w/d situation.  She now seems to recognize AD w/d and changed her position from aloof authority to kind human being.  It seems such a major shift on her part, that I draw inspiration from it

That is great! Hopefully, this is the beggining for a lot of doctors to realize what is the reality in terms of this horrible drugs they prescribe.

On 1/4/2022 at 9:36 PM, arbor said:

I asked for a mediator to guide me in negotiating issues with my neighbor. 

That is very wise decision. When we are in this state, It is not easy to deal with certain people or situations, so to have third party to do It is maybe the best choice. 

Thanks for sharing all of that:)

 

On 1/4/2022 at 9:36 PM, arbor said:

So, for right now, I'm concentrating on healing so that I don't make rash decisions as I contemplate a better living environment

Again, you are showing that patience and taking your time to deliberate is the best policy. 

 

I send you a big hug.

[arbor]

Here is an update on my lab work following the terrible spike I recently experienced.  It turns out  that though my thyroid #'s were fine, I was suffering from anemia.  While on AD's I had developed low ferritin and had 2 iron transfusions.  I wasn't informed that these transfusions can cause a future problem in absorbing phosphorous.  For whatever reasons, my iron and phosphorous, red blood cells are sub par.  The doctors haven't offered any suggestions other than OTC iron supplements which I was already taking.  Other factors (like high cortisol or Epstein Barr exposure) may also lower ferritin.  Currently for me, activities like thinking or coping bring on hyperventilation.  I have to concentrate on breathing deeply.  I've started to make changes in my diet, but am still v-e-r-y shaky.  Hard to tell what's anemia and what's w/d.

 

Wishing everyone a happy, healthy, calm recovery💗

Arbor

[Oaktree1]

Hi @arbor

 

At least you actually 'know' it's a physical condition now and not withdrawal even though it was indirectly caused by the anti depressants.    I suppose they did not suggest another supplement.  The imperative from reading your post seems to be getting your phosphorus and irons levels up asap.  At least you know not to have any more iron  transfusions as they interfere with phosphorus absorption.   

 

I hope you are able to consult a decent dietitian who might actually 'know' something to help you although maybe you are better figuring it out on your own given what happened previously with the transfusions.    I am glad to hear your doctor has had a personality transplant from aloof authority to a 'kind human being' - I think perhaps the weight of the evidence is so overwhelming now that the medical profession may be beginning to sit up - pig will fly and all that...  

 

I hope that you are on the mend now and take the time and care to look after yourself and it was great that you have a third party to mediate with that 'neighbour'.  

 

Wishing you a speedy recovery 😺

 

Oaktree1

[almuPA]

Wow, at least you found what was going on and you can focus now on the way to fix it. I had no idea that transfusions could cause problems in the future. Or, for instance, that high cortisol could also be a reason for low iron. Thanks for sharing your knowledge with all of us. 

On 1/9/2022 at 9:01 PM, arbor said:

I have to concentrate on breathing deeply.  I've started to make changes in my diet, but am still v-e-r-y shaky.  Hard to tell what's anemia and what's w/d.

 

I understand what you say. But remember, you have overcome everything until now, this has not to be different. Give yourself time to recover.

 

It is curious, because 4 months after quitting AD'S I had a blood test that showed that my iron levels where all very very low. I have the theory that citalopram caused it, but I can't prove it. And related to that, I have noticed that iron tablets were making my WD symptoms worst. I needed to take them for a while, for sure, but I am just saying it in case it is something you or other people are suffering from. 

 

I send you a big hug.

[arbor]

Thank you @Oaktree1 and @almuPA.  Your response mean so much to me.  I can't do much yet, but look forward to connecting with you more when I'm better.  This is such an arduous journey, isn't it? 🥴

 

My best to you and your healing💗

Arbor

[Erell]

Hello dear @arbor, 

I'm sorry to read how hard the last few weeks have been for you, I wish I could advise you on things.
Are you able to eat and drink regularly?

I wait for your healing by your side 🧡