Arbor: dealing with PAWS

[mva96]

Hey @arbor, thought i'd pop into your thread to see how you were doing. 45.5c is mind boggling to me, do you have air conditioning in your home? I've done fasting in the past and it has been really effective for weight loss, but your cortisol does go up when in a fasted state so its always something to keep in mind. 

 

Hope the heat doesn't take it out of you too much.

 

MVA

[Leila]

Dear Arbor, I disappeared a bit but I haven't stopped thinking about you. I read about your last events and I'm happy you completed the vaccine procedure (although not without a few incidents). I'm guessing the high temperatures won't help you feel strong. I really hope this heat wave passes as soon as possible!

I hope you are feeling a little better. Here and there I've caught a few glimpses of improvement in your posts and I really hope that this path can be more and more usual for you. 
I'm giving you a big hug and sending you loving kindness (as you taught me and because of you I discovered just how important self compassion is! And I will  be forever grateful for this)!

Leila

[arbor]

Hi @mva96  thank you for stopping by.  I appreciate your mentioning the cortisol aspect of fasting.  (It can seem like there's just no way round this PAWS except time...😔)

 

The heat did increase, but not as hot as it got in poor Lytton, B.C. (50c), and OMG!!--now I've just read that wildfire has destroyed the town.  It's at the same latitude as London.  I'm wordless--please stay safe wherever we are.  

And I hope you feel improvement in your recovery.

🥵🙏💜

[arbor]

Dear @Leila--I'm so happy to hear from you.  I understand that sometimes we have to disappear for awhile.  And also I'm very glad that you are bringing compassion to your self.  We are in amazingly difficult predicaments, dealing with the terrible withdrawal effects of these drugs.  I hold you in my heart--

Arbor 🕊️💜🍀

[Erell]

On 7/1/2021 at 11:01 PM, arbor said:

 The heat did increase, but not as hot as it got in poor Lytton, B.C. (50c), and OMG!!--now I've just read that wildfire has destroyed the town.  It's at the same latitude as London.  I'm wordless--please stay safe wherever we are.  

Stay safe dear Arbor, stay hydrated and cool as much as you can ❤

Heat can be quite a challenge in WD, I'm thinking of you.

 

How are you doing lately ? 

I admire your strenght on this PAWS journey, thank you for being an inspiration!

[arbor]

Thank you for your kind words @Erell--This morning was particularly challenging as I've developed a painful neuralgia that makes it painful to breathe or sit at the computer, so to receive your compassion and support is a balm.  Already I feel enough stronger to meet this next symptom.

 

I send you gratitude and love--💜💜💜

Arbor 

[DataGuy]

How are you feeling @arbor?

 

Yes they did try to give my grandfather Seroquel lol. He had to get an operation on his knee at the hospital and stay as an inpatient for a few days afterwards. They wanted to give it to him for "sleep" (he was suffering from delirium due to lack of it plus the chaotic hospital environment). Luckily my aunt went and rescued him. 😬

 

Yes, the heat is scary, for sure. We had smog today because of fires north of us. The sun was mostly blotted out. Luckily the air quality didn't seem to affect me too much. Supposed to clear up tomorrow. 

 

On to happier subjects: I've had a bit better time the last few days. Still difficulty concentrating, sitting still and such, but a bit better sleep on average the last week. Hoping I can keep it up. It has coincided with my increased commitment to fasting. I need to keep writing this so I don't get derailed. It takes a surprising amount of planning and thought to stay on track! 

 

Hope you are doing better : )

[arbor]

Wonderful to hear from you, @DataGuy.  I am so happy to hear that you're doing a bit better.  This is truly uplifting news!!!  Especially that you're getting better sleep.  I'm really interested that fasting can make a difference.  I hesitate to stress my system with more than what I'm doing.  It's hopeful though and worth considering after getting reports like yours.  Sleep and difficulty concentrating continue to be my toughest issues.  Is there a difference, do you think, in how benzo's and AD's cause these similar withdrawal symptoms?  Maybe our biological clocks are simply messed with one way or another--Hard to be patient.  But since there's no choice, the question becomes--how.   I'm hanging in there.  Knowing you're moving in the feeling-better direction makes it easier!

Best wishes to your kitty😻

[SandCastle]

Hi @arbor just curious how you are doing lately. I’m still having setbacks from the second vaccine dose, although things have eased up a little recently, and it sounds like maybe you’ve recovered from that bout. Hope you are doing well.

[arbor]

Hi @SandCastle  yes, things are better since the 2nd vaccine--the psoriasis has cleared, the nerve pains as well.  I'm not sobbing at the drop of a hat.  If only sleep would even out.  How's your sleep doing?  Great news to hear that your hip and backpain is improved.  I have a strong feeling that you are going to climb out of this w/d nightmare sooner rather than later.  I love reading in the success stories that they don't even remember the w/d symptoms anymore.  Boy will that be Hurray🎈🌟🎉...

Glad to hear from you--

 

[Erell]

So glad to know you're starting to feel better dear Arbor.

Hoping your sleep will strenghten soon 🙏

 

11 hours ago, arbor said:

I love reading in the success stories that they don't even remember the w/d symptoms anymore. 

Oh I love that too ! It is an amazing news, even the trauma from WD does fade.

A friend from SA recently told me that he is now living a very "boring life" and just love it : one day we will cherish boredom too ❤😄

 

Take care !

[arbor]

Thank you, @ErellI always love hearing from you.  Today I'm having a celebration:  my brother will be visiting.  We're going to go the coast (where we spent so much time as children).  I notice how much people's kindnesses help me to sleep, help me with all the symptoms actually.  At first I worried that my w/d symptoms embarrassed other people, but somehow he has been able to widen his understanding and want to help.  My heart is as close to a (hiccuppy) song as it's capable of right now💗.  I share the blessing of good will with all of us.  My, god, who could ever believe how we struggle...

Thinking of you🌈🕊️💜

[SandCastle]

@arbor I’m so glad you’re doing better and are able to get together with your family. I’ve had some improvements but still get discouraged each time I have a setback, which I feel I’m going through now.  I’m starting to wonder if it has something to do with the weather. Yet another reason to look forward to fall!

[DataGuy]

@arbor, great to hear you had a good visit with your brother. Reminds me that while I was sleeping well my sister came to visit with her new baby (had during the early days of covid lockdowns). Since I was sleeping well and symptoms were mild, I was able to visit and have a good time with everyone. Very fortunate that happened, since for many months before that I was doing significantly worse! That is the second time that occurred, as the first time she visited I was in an unusually nice window as well. Looking back, those were probably my best periods over the past year. Good timing : )

 

How are you doing? Have you gotten over the insomnia spurred by those vaccines? I was much more fortunate when I got mine: only had mild fever and lethargy the day of administration, then nothing other than a slightly odd feeling that lasted a couple days. Many of the problems are likely withdrawal related, though. Still think you are doing fantastic managing the way you do. Will have to learn from you in that area as well ❤️.

[DataGuy]

Hi @arbor

 

Hope things are going ok for you and that you have recovered from my poor diet advice 😉

 

I'm glad you got to see your brother. I also find it very tough to keep up here. I always feel like I have many more things to do than I am capable of doing, and this is merely one of them. Am still in the process of entering that window....or so I tell myself. 

 

No pressure to respond. Please update at your own pace. Just checking in : )

 

 

 

Edited August 24, 2021 by DataGuy

[arbor]

Dear @DataGuy⚾

Gosh, it wasn't your poor diet advice!  I had read how fasting can help reset the system, including the circadian clocks, and the insomnia would drive me to just about anything.  Now I'm resigned to 2-4 hours of sleep most nights.  This is a low time.  I do believe that given enough time, most people recover from this syndrome, but this morning I'm not sure that it can happen for me.  Perhaps I'm just in too low a state of mind.  Your message is so appreciated, and it rallies me to face this day.

Partly I'm assimilating the reality that my friend who had become suicidal is now in hospice.  After the doctors put him on Zoloft, he started falling and developed some blood clots.  They took him off that.  He stopped eating or drinking, was diagnosed with dementia, and slipped into catatonia.  Another odd twist happened at this point.  His personal doctor, a truly caring, conscientious being treated him with a high dose of lorazapam.  Within an hour he came out of the catatonia, and was stunned to find himself emaciated and in a wheelchair.  Unfortunately the lorazapam didn't hold.  According to his wishes, no invasive procedures will take place.  

We're saying good-by to him.  My problem is that the hospice is in the hospital which is overrun with Covid patients.  I'm afraid to go to the hospital.  Even if I weren't, the stress of the whole scene feels overwhelming.  I keep sending him my love--It's hard not to blame myself for not having the strength and courage to get there.  He has been a special person in my life.

Thank you, Dataguy for listening to this.  I so hope this w/d syndrome lifts for you soon and sooner,

Arbor🌳

[Greatful]

@arbor  I wanted to stop by and let you know that you are an inspiration.  Even with all the pain you are in, you still sound so bubbly

 It looks like you struggle with depression with and the awful SI WD.  I think it is so scary to have these thoughts and worry will it really all go away with time...... 

 

I had my second visit with my new psychiatrist today and she didn't know what PAWS was.  I don't know if she didn't know the acronyms or she didn't know what it means.  I thought that was kind of strange that she didn't recognize the word.  When will the medical field catch up with what is really going on.....   

 

We all are on very tough journey...

I don't think I could do this with out the support, caring encouragement we get from SA.

 

Thank you for taking on the hard task being a moderator.  I find the stories that come in can be so sad,  hearing the gut wrenching pain and panic coming from some of them almost rips your heart out. 

[Onmyway]

7 hours ago, arbor said:

Dear @DataGuy⚾

Gosh, it wasn't your poor diet advice!  I had read how fasting can help reset the system, including the circadian clocks, and the insomnia would drive me to just about anything.  Now I'm resigned to 2-4 hours of sleep most nights.  This is a low time.  I do believe that given enough time, most people recover from this syndrome, but this morning I'm not sure that it can happen for me.  Perhaps I'm just in too low a state of mind.  Your message is so appreciated, and it rallies me to face this day.

Partly I'm assimilating the reality that my friend who had become suicidal is now in hospice.  After the doctors put him on Zoloft, he started falling and developed some blood clots.  They took him off that.  He stopped eating or drinking, was diagnosed with dementia, and slipped into catatonia.  Another odd twist happened at this point.  His personal doctor, a truly caring, conscientious being treated him with a high dose of lorazapam.  Within an hour he came out of the catatonia, and was stunned to find himself emaciated and in a wheelchair.  Unfortunately the lorazapam didn't hold.  According to his wishes, no invasive procedures will take place.  

We're saying good-by to him.  My problem is that the hospice is in the hospital which is overrun with Covid patients.  I'm afraid to go to the hospital.  Even if I weren't, the stress of the whole scene feels overwhelming.  I keep sending him my love--It's hard not to blame myself for not having the strength and courage to get there.  He has been a special person in my life.

Thank you, Dataguy for listening to this.  I so hope this w/d syndrome lifts for you soon and sooner,

Arbor🌳

 

This sounds so hard Arbor,

losing someone dear and not being able to  visit. Covid is scary (I had it) and I totally understand not wanting to be exposed to it. I think it is the wise choice in this case. You are in a fragile state with withdrawal and you don't need Covid on top of that. There is nothing to blame yourself for. Can you Zoom with your friend. He is a lucky guy to be having so many people care about him and want to be with him to say good bye. You must love him so much to have this internal battle in the face of such a scary disease. 

 

It is hard in the middle of a wave to believe that it will end. I had to the severe insomnia in the beginning for a few months - I still don't sleep much but then I slept 2-3 hrs a night and had morning terrors. It was horrible. I tried lots of things for it and the change happened when I stopped trying and decided to just do my best to live with this. I had worried that I would go psychotic or that I would die from lack of sleep but your body is able to get through on 2-3 hrs until you stabilize even if it takes months. 

 

I am sending you warm thoughts, 
OMW

 

 

[DataGuy]

@arbor, 

 

Yes, of course. Was just kidding about the diet advice. I will keep your suggestibility in mind and avoid offering any crazy solutions to the insomnia : )

 

I'm sorry about your friend. I think it is very reasonable to be afraid to go visit. It isn't any sort of moral failing or dereliction of duty. Neither the pandemic, the overrun hospital, your friend's illness, or your own condition is your fault. Sometimes things do not turn out the way we had planned, and there is nothing we can do about it. I think this has happened to many people during the last 18 months. I don't think your friend would want you to put yourself at risk simply to say goodbye, especially when you have been through so much already. Try to think what your friend would want for you, rather than what you feel you owe to him, and think what he would say if he were lucid and healthy. 

 

Thank you for sharing this, arbor, and hope we are all feeling a bit better soon. ❤️

[arbor]

Dear @Greatful❤️

Thank you for these kind words.  They mean so much--each word--like water in the desert.

I wish your psychiatrist was up to date.  It amazes me how out-of-touch modern medicine has become.  I wonder if she is willing to read Alto's recent publication.  

In the meantime you're so right, where would we be without each other.  Thank you to you too Greatful for all that you do here.

Thinking of you 🌻🌺🦢🍀

Arbor

 

 

 

[Erell]

Sending warm thoughts dear Arbor, please be kind to yourself, you're already doing your very best ❤

[olderinoregon]

Hi  Arbor, 

 

I don't have PAWS but I live near Portland.  Have you found any doctors in our area "fluent" in SSRI withdrawal.  I can private pay if needed.   I just want competent help that isn't too out there.  I am not a crystals and magic kind of person.  No worries if you like them btw.  Nice to meet you.

 

olderinoregon

[arbor]

Dear @Onmyway,

It is so good of you to share these thoughts and experiences.  I truly appreciate your support.  It really helps put my mind at ease🌈

You're so right that during a wave it's very hard to remember that it will pass and isn't life forever, or that things can't improve even when the pattern doesn't change in a positive direction.  Then words like yours are gentle life-rafts--

Thank you💗

Arbor

[arbor]

Dear 

Thank you for these words, and a chance to smile.  Your wise and kind overview set my mind free.  

(Dang, these waves can grab the brain and sink in their claws☠️)

I'm having a better day and hope your day is going well 🍀

Arbor

[arbor]

Dear @DataGuy  Whoops!  I forgot to type your name in!  (It was just so strong in my head, I didn't bother typing it!)😊

[arbor]

@ErellYour note brightens my day.  Thank you 💗

I send you a hug across the miles🕊️

Arbor

[arbor]

Hi @olderinoregon

I've been to quite a number of doctors in Portland and the SW area, but none were interested in learning about AD withdrawal.  Since you are asking, I will share the advice to especially avoid OHSU as they were the least helpful and most uninformed.  A friend recently had a very unfortunate experience with the Portland VA's psychiatry dept.  Both hospitals, but especially OHSU, are closely tied to the pharmaceutical companies.

I recommend reading this site, and as specific questions come up for you, asking questions.  Some of the other moderators are very knowledgeable, especially about Paxil and tapering.  Here are other links you might find useful:

How to talk to a doctor about tapering and withdrawal?

The slowness of slow tapers 

Micro-taper instead of 10% or 5% decreases

 

 

Considerations About Stability Stop Jumping Around 

Keep it Simple, Slow, and Stable

 

It's nice to meet you, too.  I wish you a calm, healthy, uneventful journey through your taper.  It may call for patience, but in the end it will be so good to be free of the risks associated with these drugs.

Best wishes,

Arbor

[Erell]

Hello dear @arbor,

How are you doing in this beginning of autumn ?

Thinking of you 🍂

[almuPA]

Hello @arbor,

 

just passing by to say that you are in my thoughts. I've read your lasts posts. I am sorry that you are going thru a wave and stressful events.

 

I send you a Big hug.

[arbor]

Hello @Erell--It is such a treat to hear from you.  I hope you're doing ok, and that you feel you're beginning to see small progressions.  For the first time I had a good dream recently.  I dreamt that I was talking with some one in person from here on SA--maybe it was you🌞--and I was saying, "I've recovered from PAWS (🕊️)!  And so will you💗"!

My biggest issue all along has been insomnia, followed ever so closely by hyper-neuro-emotions.  I avoid writing here because I don't want to discourage others with my lack of improvement.  Then a couple of weeks ago, I did, lo-and-behold, find I was singing out loud, even laughing.  My sleep, which is still very broken, has improved.  I can coax myself back to sleep more than before.  The unsettling emotions remain close to the surface, springing out in spite of all the reasoning I try to bring to them.  However, I take heart in the fact that my tinnitus is better, the rashes after the vaccine have finally cleared.  I'm not plagued by so many nightmares.  Whoever thought we'd have to endure so much?  I think we could invent a new word, something like hyper, unworldly patience--"Mega-patience!" "Fortitude gargantuesque!"   just for the experience of surviving w/d from psycho-drugs.  I'm designing banners for all of us in my mind.  We should hang them from our windows, decorate the doctors' waiting rooms, float them from planes.🚩

Thank you for being there, dear Erell--🍁🍂 

[arbor]

Dear @almuPA

Thank you for dropping by.  It warms my heart to hear from you.  Such kindness, I think, really does heal us.🙏  (So much better than AD's--)  I hesitantly think I can say, I'm doing a little better(🌞) I'm going to go to your site so I can catch up further with you.

Hugs in the meantime ((((almuPA))))

[Erell]

Hello @arbor, 

 

I know it's been a long journey, I send you my support, please hang in there ❤️

I know that we often hope for more improvements than we have at the moment, but tonight I will add to my gratitude list that our dear fellow Arobor is seeing some progress !

 

A good dream ! That's wonderful ! Really, it's so nice when the night offers a real break rather than another form of struggle after the day !

And dreaming of recovery, wow ! I want to think that the future Arbor came to give you a message: "don't give up, keep going, it's so worth it ! Just know you will get there, I'm waiting for you in the sun and I'm so proud of you! "  

 

On 10/12/2021 at 4:13 AM, arbor said:

I avoid writing here because I don't want to discourage others with my lack of improvement.  Then a couple of weeks ago, I did, lo-and-behold, find I was singing out loud, even laughing.  My sleep, which is still very broken, has improved.  I can coax myself back to sleep more than before.  The unsettling emotions remain close to the surface, springing out in spite of all the reasoning I try to bring to them.  However, I take heart in the fact that my tinnitus is better, the rashes after the vaccine have finally cleared.  I'm not plagued by so many nightmares.   

 

Instead of discouraging, you're spreading so much hope right now my friend !
I'm glad you're having some relief, this is so well-deserved.

 

Oh yes, super, giga, mega patience ! I often think that the WD is a crash course in all the Buddhist precepts  

 

Thank you for these news, sending you healing vibes 🌼

 

[Winner51]

Good morning Arbor.  I’m happy to read your symptoms seem to be improving. I was perusing the site looking for others with psoriasis and I found you! We have some similarities with skin related symptoms.  A couple of months ago I developed what looks like psoriasis.  I did nothing because I thought it was simply another WD symptom and it would go away.  It has not and it’s gotten worse so I have a dermatologist appt tomorrow. Did your psoriasis develop from the shot?  I also have rheumatoid arthritis and Sjögren’s syndrome so I  have a compromised immune system anyway.  I’ve not had the shot BC I’m scared what it will do with the WD symptoms. I read your psoriasis went away after about 4 mos and I read you were diagnosed by a doc.  Can you tell me a little bit more about that?  Treatment? Self care? Diet? Meds?  I too have had random bruising appear, my skin has aged very quickly and I’ve had all kinds of skin issues that have gone away on their own.  Another odd and very annoying thing has developed from cardio exercise…. My skin will tear and erupt from over exercising so I’ve had to stop walking.  I tested this theory by quitting exercise and the eruptions stopped.  My skin is extremely thin and will tear easily. Also, objects will make lasting impressions on my skin ie: my wicker furniture will make marks that won’t disappear for many hours. I am 26 mos off the meds and my 2 year mark was hell; Old symptoms reappeared, new symptoms appeared and I felt like I was starting all over again.  How are you feeling these days? I believe you’re about on the same timeline? 25 mos, is that correct?  I believe your sleep has improved?  I’m happy to report mine is so much better! 😀

[arbor]

My goodness @winner51--We must be cousins!  The symptoms you describe are just like mine down to each of the skin problems.  I'll give you an abbreviated history:

During the acute phase of w/d I developed a mysterious rash and yes the skin doctor diagnosed it as psoriasis which I'd never had before.  He recommended cortisone cream which I didn't take, much to his scorn. But I didn't want any more cortisol.  The psoriasis slowly waned until I got the second vaccine.  Then it returned full-on.  Both times coincided with 1-3 hours of sleep per night for long stretches.  This last time, I was bolder in taking melatonin and fish oil and I think they might've helped.  I also use some herbs I researched and an herbal cream which I can PM to you if you wish.

I've also had tinnitus and extreme dry mouth (at night).  After reading a bunch on autoimmune problems I've wondered if I don't have a version of Sjogren's as my joints and knuckles sometimes swell at night, and I have swollen salivary glands.  These symptoms seem to respond at least in the short run to higher amounts of fish oil, and those blessed nights when I get sounder sleep. 

Along the way, I've wondered about autoimmune problems in relation to AD w/d.  Perhaps you've seen this SA site on autoimmune disease: Auto immune diseases triggered by SSRI withdrawal? Mast .... 

I was tested for mast cells which showed no problems, so I haven't focused that much on histamine.  The runny nose and sneezing/itching for me seem to correlate with sleep.

 

Here are other examples of studies I've found associating the use of AD's with autoimmune diseases.  There are also studies making similar associations with other psycho-drugs. 

 

Commonly Used Antidepressants May Also Affect Human ...https://www.sciencedaily.com › releases › 2006/01 "The exact relationships between disorders and diseases varied – for instance, individuals with PTSD taking antidepressants known as selective serotonin reuptake inhibitors (SSRIs), were at a particularly high risk of developing autoimmune diseases.Jun 21, 2018"

Autoimmune Diseases Could Be Linked to Living With a ...Jan 20, 2006 — They do not know yet, however, whether these SSRI (selective ... also bolster immunity to the point that they trigger autoimmune disease.

Stress disorders tied to increased risk of autoimmune diseases   › us-health-stress-disease › stre...

I have a meeting I have to go to now, but I'll get back with you about other information that might be interesting, as well as things I'm trying.

I'm sure glad your symptoms are going in the direction of improvement.  I feel hopeful for all of us getting off the drugs.💗

If I didn't have PTSD before (and certainly I'd had, like most of us, stress) I have it now as a result of w/d.

Glad you're there,

Arbor

 

 

 

 

[Winner51]

Thanks so much for your reply Arbor.  I know for sure WD triggers autoimmune diseases.  My Sjögrens prior to withdrawl only affected my mouth.  I take a drug called pilocarpine to promote saliva production.  This drug did the trick in years past.  Now in WD I’ve had to triple the dose and my gums pretty much stay inflamed to some degree 24/7 and it now affects my eyes.  I have dry eye now and I use saline several times daily to help with that. I’m trying to stay away from meds for my eyes.  I’ve worn contacts for close to 40 years and now I can no longer wear them.  I attribute these changes in Sjögrens to WD.  My RA hasn’t changed much in WD.  It seems mirtazapine created massive systemic inflammation in my body.  I remember when I began taking the drug in 2015 my body would turn blood red. It was so bizarre.  For instance half of one of my feet would be beet red and the other half would be white as snow.  I believe this occurred as my body became saturated with the drug.  Sometimes I wonder if I had an allergy to the drug itself.  In WD I‘ve had all kinds of redness in many different ways all over.  The only thing I can figure is massive allergy and/or inflammation. I will be making an appointment with a holistic doc to see if I might be able to get some help there. Praying so.🙏

 

Thank you again for taking the time to reply.  I hope for a speedy recovery for all of us!

[arbor]

I couldn't resist this: