Believer

[Believer]

Hi @rmce72a

True, redirecting or changing the channel, is difficult. More so when they seem relentless. Some times the best I can do is just say “that’s not true”. The more I do that, the easier it has become to not spiral. I also think there is a component of healing that has happened for me as well. But it is definitely up and down.

 

I see you are long hauler with psychotropics as well, we have many years of these drugs interfering to unwind. 
 

Stay strong and tell those untrue thoughts to back off. Hang in there. I believe it will get better, but it won’t be easy.

[rmce72a]

Thank you for responding. It really helps me to be able to keep in touch with people who are in the same miserable boat. I think that just having someone to communicate with who really understands what we are feeling physically and mentally is helpful.  Even friends and/or family members who know we are dealing with something tough have no idea how terrible all this feels. I hope you will check in from time to time to let me know how you are. I want to believe so much that there is an end to all this suffering, but many days it's hard for me to really believe that. Take care. xo Rebecca

[Catina7]

Here's another great site with lots of good, encouraging information:  https://mccare.org/

 

 

[Kat66]

On 2/21/2023 at 4:54 PM, Believer said:

Hi @Kat66

I’m doing okay. Swinging pretty wildly the past several weeks, but on the good side, I am feeling a bit better on the upswing and the down swing isn’t as low, although it’s still pretty low. I have a bit more interest in things lately too.

 

The vision in my right eye fluctuates often and the muscle jerks do as well. I haven’t found anything that triggers it, but vision and jerks seem to be settling a little, for now anyway. It’s certainly tough when things ramp up after a bit of a reprieve.

 

I find that my taper rate seems to work well for me right now.  I read that you are going to drop by .1. Have you considered 5%, just to test the waters? It may go a little smoother for you.

 

I have been talking with the same counselor pretty much my entire taper journey. She told me to ask myself if the intrusive thoughts are “true”. And if I can’t say for certain “yes”, they are true, then to challenge them and replace them with the truth. I hope your therapist can offer you some tips that you find helpful. The ruminating and intrusive thoughts can be so exhausting.

 

Hang in there, you’re getting really low.

 

Hugs,

Believer

 

Hey, sounds like things are improving slightly for you, that's great news! Are you tapering consistently by 5%? I might do 5% next cut, see what happens. 

 

I've got to the stage where my intrusive thoughts are so ingrained I'm stuck as to how to overcome them, but I'm hoping my therapist who I've just started seeing again, will be able to help on that score.

 

We'll get there! One step at a time, one day at a time...hugs xx

[Believer]

Hi Kat,

yes, I have been doing 5% drops since around 15mgs, and a 1% drop per day for five days since 5.5mgs. The lower I got, the more the symptoms ramped up. This worked really well to keep the symptoms lighter and me functional.

 

That all changed after my 2nd vaccine, at which time I held for over a year. There were times years ago that I held for months, sometimes many months, due to life stressors and wanting to feel my best. I now do the 1% for five days every 4-6 weeks. Now it seems, the longer I hold, the worse I feel.

 

I encourage you to try a smaller drop and consider stretching it out over 5 days, it seems less harsh. A modified Brassmonkey slide.

My intrusive thoughts are settling down with time, I believe challenging them helps me to not focus on them as much. But yeah, I get it, I thought many of them were ingrained, then my brain would switch to something else.
 

Keep us posted on how you do.

 

Hugs!

[Kat66]

Interesting that you feel worse the longer you hold, wonder what that’s about? Who knows?

 

I’m going to try the 1% over 5 days on my next cut, see how that goes. Sounds like it’s a good way to smooth out a sudden drop.

 

Hugs back xx

[Believer]

On 2/25/2023 at 2:47 AM, Kat66 said:

Interesting that you feel worse the longer you hold, wonder what that’s about? Who knows?

 

I’m going to try the 1% over 5 days on my next cut, see how that goes. Sounds like it’s a good way to smooth out a sudden drop.

 

Hugs back xx

This is just a guess, but it may be because I had been on the drug for over two decades and my GP said it was no longer working. (Mild brain zaps.) Switched me to bupropion, to which I reacted poorly to, then prescribed Seroquel for sleep, took three doses, horrible reaction so I went straight back to Zoloft and began tapering. As the literature states, these drugs aren’t intended for long term use (no doctor ever told me that or questioned it, I think we all believed the chemical imbalance myth.) I know I did anyway. 
 

In a nutshell, it’s now causing me more harm over time. I look forward to the day so will be free of it.

 

Hang in there!

[methuselah]

Hi @Believer fellow long hauler here.  Just read through your thread and see many similarities to my story.  I’ve been holding for several months and it doesn’t appear to be helping much,  if at all sometimes.  I know the drug is not doing anything for me saving keeping me out of acute withdrawal, so some form of poop out is on the table.  Feels paradoxical too sometimes as in the drug itself is  making things worse which makes holding confusing, frustrating, and potentially pointless.

 

I also had the Pfizer bivalent booster in October 22’  and haven’t felt rigjt since.  It really fired things up for me and pretty much eliminated having good full days.  Still have some windows but they are usually in the evening if they come.  Though sometimes the morning. Who knows why. I’m growing weary of holding and may start a micro taper of like .01mg per day until I get to 2.5% drop and hold to see what happens.  
 

Anyway, just thought I’d drop in and say hi and I’m right there with ya!  The drugs SUCK, withdrawal sucks, its all beyond belief and is a very surreal experience.  

[Believer]

Hey @methuselah,

Thanks for stopping by. Agreed, this low dose is only serving to keep me from acute withdrawal also.

 

Glad to hear you still have afternoon windows. I haven’t had one for years and I remember them fondly. 😜

 

My long holds used to help, that hasn’t been the case for two years now, since my second Pfizer vax. Once every week or so I will get a lift in symptoms, which gives me hope when it is greatly needed.

 

Hang in there, and ya, maybe a micro taper will work well for you. It will at least be a step in the right direction.

 

Believer

 

[methuselah]

Well, they’re not exactly afternoon windows, more like mid to late evening but I’ll take it.  
 

im curious, What exactly happened after you got the Pfizer vaccine?  Was it the second shot of the original vaccine, or a booster?  

 

I’ll hang in there, you do the same.  Even if it’s by the skin of our teeth sometimes 😬

[Believer]

@methuselah

After the first vax I felt like I had made a cut (no cut though for several months), two weeks after second second dose I had adrenaline dumping, intractable insomnia, polyuria, extreme flight/fight/freeze, dizziness, balance issues, muscle loss, horrible anxiety, lost 18 pounds over a few weeks, extreme brain fog, worked from home for two months before I had to quit entirely.
 

Had CTs, MRIs, blood work, 2x24 hour urines. I was sent to hematology for elevated white blood cells and something else I can’t remember. (GP told me I had a Carcinoid timor.) Nothing else found. Released from hematology a couple months ago, labs back to normal. GP now thinks adverse reaction to vax. I have since found other similar stories of adverse vax reactions. Settled down a lot but no where near my W/D baseline. I still can’t handle too much stimulation or stress, mostly homebound if it weren’t for my husband. Still can’t handle the stresses of driving.

 

Yep, skin of our teeth for sure. One day, one minute, one second sometimes.

 

[methuselah]

Jesus Christ!  Ya, mine felt like a big cut but nothing like that.  Wow, just wow. I’m sorry you had to go through that.  Thankfully you’re mostly on the other side of it now.  
 

My cousin’s husband had a horrible reaction  to the first vaccine.  It was more physical in nature with lots and lots of crippling neuropathy.  He was a firefighter in Seattle area, refused to get another shot and they fired him.  took about 8 months to clear up.  My brother had zero reaction, zero…lucky b@stard haha.
 

I feel like I need to say I’m not an anti vaxxer as I had the original and booster, but never again with the covid vaccine.  No thanks, I’ll take my chances.  

[Believer]

@methuselah
ya, it sucked, big time. I forgot the neuro stuff, tingling all over, still have myoclonic jerks, had double vision, horrible DP/DR. Vision is now blurry off and on, DP/DR better.

 

Worked in healthcare (administration) south of Seattle, had to get jabbed to keep my job as well. Glad your cousins husband has recovered!
 

Not an anti vaxxer either, but I am certainly leary of MRNA now. No more for me either. 

[rmce72a]

Hello Methuselah and Believer. Just happened upon this thread, and I am so glad you are both hanging in there. You have responded my posts last month, and I appreciated that so much. 

 

I, too, am still dealing with the roller coaster of this awful withdrawal. Interesting to read about your vax reactions. Husband and I both had the vax and 2 boosters, and it seemed to go ok at the time, but I sometimes wonder if my struggles to even drop a tiny bit (73 down to 72.8 was so bad I had to increase back to 73.05 where I am holding and have been for 10 months.) Last fall when husband got 3rd booster, I did not nor did I get a flu shot which I usually do. I am not anti-vax either, but in our fragile situations, I think we don't need to add another level of stressors to our poor bodies. I'll roll the dice. No more vax for me. Besides, Pfizer makes the vaccine I took, and they also make the Effexor XR I take, so I don't trust them. If they cared about patients in our situation, they would make a variety of smaller doses so we would not be forced to count or weigh beads!

 

I wish I could figure out a way to have more consistent doses with bead counting. I count every capsule and calculate the dose per bead, then take out the # of beads that will get me closest to 73. Sometimes it's 73.09, sometimes 72.95, sometimes 73.05. Alto has told me that this small difference shouldn't matter, but I still worry since my body is so sensitive. But it's all I can do, I guess. I don't trust myself with calibrating and weighing, so I will continue to count.

 

Anyway, glad to see your posts. Feel free to message me anytime to keep in touch. It helps to have the support of fellow sufferers. xo Rebecca

 

 

[Kat66]

On 3/6/2023 at 6:41 PM, Believer said:

This is just a guess, but it may be because I had been on the drug for over two decades and my GP said it was no longer working. (Mild brain zaps.) Switched me to bupropion, to which I reacted poorly to, then prescribed Seroquel for sleep, took three doses, horrible reaction so I went straight back to Zoloft and began tapering. As the literature states, these drugs aren’t intended for long term use (no doctor ever told me that or questioned it, I think we all believed the chemical imbalance myth.) I know I did anyway. 
 

In a nutshell, it’s now causing me more harm over time. I look forward to the day so will be free of it.

 

Hang in there!

From what I gather, the longer you're on these drugs the longer it takes to come off them successfully, and you've also been switched back and forth to different drugs which can't help. It must feel like doctors are just playing around with our health without any care for the consequences. Oh let's try them on this, let's try them on that. I wasn't told either that the drugs are only meant for short term use and was also fed the serotonin imbalance myth. Basically we've all been lied to. How are you doing at the moment?

xx

[Believer]

Hi @Kat66,

Yeah, I think the drugs may cause more problems for people then doctors are willing to consider, especially when a person has been on them for many years. I think people are often told “its your depression, your anxiety”, etc., the drugs are rarely looked at as the cause, and many docs aren’t willing to admit that they really don’t know. But they sure are willing to send you away with a new prescription. Seems that’s the most used tool in their box. 
 

Thankfully, I’m doing a bit better the past few days. More hopeful. I have been swinging dramatically though. It’s pretty weird. But my baseline is improving on both ends. Never know what to expect from one day to the next though.

 

Looking to cut another 5% next week.

 

How has your sliding 5% gone? How are you doing overall?

[Believer]

@rmce72a

In looking back at the timeline of my symptoms, I’m pretty certain the vaccines didn’t do me any favors. Either that, or I had atypical (for the beginning of the pandemic) symptoms of Covid so was never tested. I’ve since learned that Covid and the vaccines can produce the symptoms I have had. I had been on my taper journey about 5 years by then. I held for about a year and decided to begin tapering again even though I felt so bad, just to see if anything would change. I have continued my slow taper since then. The days of being fully functional (working, driving, handling stressors with minimal upset, etc.) are behind me for the moment. Thank God for my husband. But I am heading in the right direction.

Yeah, not a fan of Pfizer either. 🤣 

 

I agree with Alto, that small difference in dose would be negligible. It sounds like your CNS is just really unstable right now. Have you decided to make any cuts or are you holding steady for now?

 

 

 

[rmce72a]

Hello Believer. I appreciate for your response. Right now I am holding (more and less with the variations in bead count.) I am trying to keep the dose at or below 73. If the count puts the dose at say, 73.10, I save that capsule for later when I can take out an extra bead when I am at a lower dose. For now, I am trying to stay in the mid-high 92.9 area. I haven't felt well for several days, but I'm not sure I can blame that on dosing. Probably just a wave.

 

If I understand you correctly, you are continuing your slow taper even with symptoms. I've decided to do that too since 10 months of holding hasn't made much change in how I feel. I think that if I wait until I am stable after holding for more than 10 months, I may never be able to taper. What do you think? My current plan is to stay in the 72.91-72.99 area for a while and see how it goes. I don't want to go above 73. It amazes me that even these tiny dose changes can create such havoc in the CNS. Do you think I am foolish to do this?

 

How are you feeling day to day? I hope you are able to find some measure of relief now and then. I, for one, need an occasional "feel better day" to keep myself motivated. Take care and thank you for keeping in touch. xo Rebecca

[Believer]

Hi @rmce72a,

Yes, I continue to taper even though I don’t feel well. 
 

You need to decide what level of symptoms you can tolerate while tapering. Prior to my adverse reaction to the vaccine I had symptoms while tapering. They were predictable and manageable and I would occasionally hold for months at a time if life was more stressful. I was never symptom free. Slow tapering doesn’t guarantee no symptoms, but does in many cases help them to be more manageable.

Every day is a box of chocolates. I do my best to take them as they come. Some days are a bit better than others.

 

I wouldn’t focus so much on the tiny difference in your daily doses. I don’t know that you can  expect to be completely symptom free after holding for 10 months. If your symptoms are manageable you may want to consider a small reduction and see how it goes, expecting that you will experience some sort of symptoms.

[rmce72a]

What you say is pretty much what I am thinking. I think I will have symptoms no matter what I do. As you point out, the real dilemma is how much am I able to tolerate? I guess I won't know until I am in the thick of it. I do know that some days are pretty awful as it is, but somehow I survive. I just don't know how much worse I can tolerate. Either way, it's a lose-lose situation whether I taper or not. 

 

I know that if I continue as I am, symptoms will continue. I am entering year 4 of symptoms, but I only started tapering last May after finding SA and understanding why I was so ill. I will say that the full-blown panic attacks, crying 24/7, and sleepless nights have improved since late 2019/early2020 when all this began after I followed my stupid doctor's and NP's advice and switched directly from Eff to Cymbalta and back to Eff with no titrating within a year. (Sorry. I know anger at our uninformed doctors is not constructive, but I'm angry anyway. I know we can't re-write history.)

 

I do have a question for you about your dosing. I see that your dosage drops are, for example, 4.13mg, 3.92 mg, 3.74 mg... How are you able to be so precise? When I count beads, even though I take out 7 beads, the dosage might be 72.92 mg or 73.02 mg... Is it because you are taking Zoloft and the dose per bead is different? 

 

Again, thank you for your reply. I value your input. Take care. xo Rebecca

[Believer]

@rmce72a,

My Zoloft/sertraline is a pill and I use a scale. No beads.

 

I did a straight switch from Zoloft to Wellbutrin and back to Zoloft a few years back. Haven’t been symptom free since then, so I get it. That’s when I realized I needed to get off all psychotropics. Found SA when things got rough. I knew nothing about withdrawal then.

[Soup]

@rmce72a @Believer reading your conversation has made me realize even more I need to move forward through this taper . Thank you for sharing your thoughts . Sending you both hugs of healing ( because we all need a lot of that ) 

[rmce72a]

Thank you for responding @believer and @soup. The terrible symptoms are always present, and very few things bring comfort, but being able to correspond with you and others who are also in this mess somehow makes things a little better for me. Misery loves company, maybe? Please keep in touch. Hearing from others helps so much. xo Rebecca

[Believer]

@Soup,

Hi Soup, yeah, it’s a tough call. I will admit, the first several cuts (months), I didn’t feel any improvement, or worsening of my symptoms. I am just now, a year or so later beginning to feel slightly better in the rollercoaster fashion that is withdrawal. Nowhere near where I was prior to my Covid vax reaction, but still a bit better. I’ll take it, and continue my slow taper. 
 

I hope you eventually start to experience a lessening of your symptoms whatever you decide.

 

Blessings,

Believer

[Kat66]

Hey @Believer I know exactly what you mean what you say you don't know what to expect from one day to the next, which makes it difficult to plan anything don't you find?

 

Good luck with your next cut, I'll be doing another sliding cut soon, the last one worked really well, no nasty shocks.

 

A pharmacist at my doctors' surgery rang the other day to ask about my repeat Rx for citalopram and why I hadn't filled it in a while. I said I was weaning off it and was down to 1mg, whereupon she said it was the usual protocol to 'wean people off in 4 weeks, with people taking half dose, then one tablet every couple of days, then off', I had to bite my tongue I tell you! She had no comprehension of the tiny dose approach I was taking. I've been on this stuff for years so 4 weeks is a joke!

 

 

[Believer]

Hi @Kat66

Absolutely, I very rarely make plans, and the ones I do are pretty much “a must”, dentist appt, hair appt., that kind of thing.

 

So glad the sliding cut worked better for you. Tomorrow will be my last 1% drop this week and will get me to 2.6mg.

 

Yeah, it’s frustrating when the experts offer their opinion and it is so far off from the reality that many of us experience. Do they not continue to educate themselves and read journals on the drugs they prescribe and dispense? Especially in the UK, they are leading the research on antidepressant withdrawal now. 

[Kat66]

On 3/24/2023 at 6:41 PM, Believer said:

Especially in the UK, they are leading the research on antidepressant withdrawal now. 

Are we really?? Wow, I didn't know that. You wouldn't think that!

 

How are you at the moment?

[Believer]

Hi @Kat66

Im in a small upswing in my baseline, thankfully. Into my first week of 2.6mg. Hopefully the upswing sticks.

 

How are you, have you done another cut?

[Kat66]

Hey @Believer really glad to hear there's an upswing. 

 

I'm still (touch wood) in quite a good place - still holding at 1mg but intending on making another (graduated) cut in a couple of weeks. My new HRT patches are still doing the trick and whether this is a window or HRT induced, it's lasting, so I'll take the win for now!

[Kat66]

Hi @Believer it’s been a while since we’ve caught up, I was just wondering how things were with you?

[Believer]

Hi @Kat66

Thanks for asking. I am somewhat improved from the ADR to the Covid shot. I have less DP/DR, vision is mostly stable, as is balance. I still get some cog fog when stressed, but I am living a very quiet boring life at the moment. I am able to drive a BIT more but speed still causes my brain to overload and I fatigue quite quickly. All that to say, I am far from where I was prior to the shot, but I continue my slow 5% taper every 4-6 weeks, so there’s that. 
 

How are you?

[Kat66]

1 hour ago, Believer said:

Hi @Kat66

Thanks for asking. I am somewhat improved from the ADR to the Covid shot. I have less DP/DR, vision is mostly stable, as is balance. I still get some cog fog when stressed, but I am living a very quiet boring life at the moment. I am able to drive a BIT more but speed still causes my brain to overload and I fatigue quite quickly. All that to say, I am far from where I was prior to the shot, but I continue my slow 5% taper every 4-6 weeks, so there’s that. 
 

How are you?

Glad to hear you're somewhat improved. I really hope things keep on getting better for you!

 

I'm not in a good place. I came off citalopram 0.7mg in November thinking it was low enough to jump off and have been paying for it ever since. I've reinstated at 0.5mg to try to stabilise so we'll see where that goes.

[Believer]

Thanks @Kat66,

I’m sure the low dose I’m on isn’t doing me any favors (after 25+ years) so I continue to cut even though I’m no where near my old w/d baseline. But I do feel better overall. I wasn’t doing well at all when I began to cut again a year post shot ADR, but that is slowly changing for the better.

 

Yeah, .7 sound low but from what I’ve learned here it isn’t low enough for many of us. I’m sorry you had to reinstate. I’m shooting for a final dose of .05 or lower.

 

How are you doing since you reinstated? Do you feel like it’s helped at all?

[Kat66]

No I don’t feel much better yet really. I’m hoping a long time @ half a mg with no cuts will help stabilise things.

 

Silly question but if you think your low dose isn’t doing you any favours, why are you continuing to cut? Would you be better up dosing? I’m just trying to get my head around what you said…

[Believer]

Hi @Kat66,

What I mean by it “isn’t doing me any favors”, is that it is causing problems. These drugs weren’t intended for long term use. They make changes in the brain and gut. It has been proven that they don’t treat low serotonin. “Experts” don’t even know what they do.  I personally never felt as if they did anything for me, good or bad, until I tried to get off them.

 

They poop out for many, and require an increase in dose to help the symptoms caused by poop out, in my case, brain zaps. 
 

There is a lot of research out there showing that they are no better than a placebo. But for some they cause ADRs, and WD syndrome. Have you read any of the research by Horowitz or Moncrief, to name a couple. Have you read Mad in America? They are all worth reading.

 

I feel better and better the lower I go, although it is very, very slow and non linear.  The symptoms I have trying to get off this drug are things I never experienced prior to taking it. In my opinion, they cause more harm than good.

 

I hope that helps explain it better. 

[Kat66]

20 hours ago, Believer said:

The symptoms I have trying to get off this drug are things I never experienced prior to taking it.

Agreed. My WD depression is not like ‘normal’ depression. It feels ‘toxic’.

 

20 hours ago, Believer said:

Have you read any of the research by Horowitz or Moncrief, to name a couple. Have you read Mad in America?

No I haven’t but will look them up. 
 

I’m glad your general trajectory is going in the right direction, gives me hope this nightmare will end.