Schmeg82 Paxil withdrawal and taper after 21 years

[LostInCanada]

@Schmeg82 you have a great attitude. ❤️🙏

[Schmeg82]

1 hour ago, LostInCanada said:

@Schmeg82 you have a great attitude. ❤️🙏

I’m really trying my best, that’s all we can do at this point right?  As much as I want to throw in the towel that’s not an option for me, but this is hard, extremely hard to endure, especially in these awful waves.

 

I hope you’re getting some relief today.  

[LostInCanada]

39 minutes ago, Schmeg82 said:

this is hard,

Wouldn't it be great to have a pain free day.... future goals lol

[Schmeg82]

12 minutes ago, LostInCanada said:

Wouldn't it be great to have a pain free day.... future goals lol

Yes, I yearn for some pain free days.  Heck, give me pain over this nausea, dizziness, floaty head feeling I have.  All these symptoms are crazy. Never experienced anything like this in my life.  

[LostInCanada]

2 minutes ago, Schmeg82 said:

give me pain over this nausea, dizziness, floaty head feeling I have.

I have them all so I'd give up any of them 💯

[Willy]

55 minutes ago, Schmeg82 said:

Yes, I yearn for some pain free days.  Heck, give me pain over this nausea, dizziness, floaty head feeling I have.  All these symptoms are crazy. Never experienced anything like this in my life

I with you on this. I would certainly take physical pain over this other craziness. I can eventually tune out physical pain but the head stuff is unbearable . I also have these heart palpitations and higher hr now that makes everything worse. The minute I get up to do I minor chore my hr jumps up like I’m running and makes my symptoms more intense 

[Schmeg82]

2 hours ago, Willy said:

I with you on this. I would certainly take physical pain over this other craziness. I can eventually tune out physical pain but the head stuff is unbearable . I also have these heart palpitations and higher hr now that makes everything worse. The minute I get up to do I minor chore my hr jumps up like I’m running and makes my symptoms more intense 

I had that in the beginning of my withdrawal, it will go away and regulate again!  Mine is back to normal plus I’ve been exercising again, my BP is actually super low now, 90/60s it’s crazy.  

[Schmeg82]

Drove myself to my bloodwork appointment this morning.  It’s only 5-6 miles down the road but still, usually I’d beg my husband to take me, I’ve been feeling very brave lately.  Proud of myself for that.

 

had a 85% better evening last night and better this am.  A little more relaxed than all week before.  I hope it stays this way.  Still have some slight tremors and my neck is killing me but I’m feeling a bit better.  Praying this lasts throughout the day.

[Catwoman73]

I'm glad you're feeling a bit better, @Schmeg82.  Sounds like you may be hitting a window?!  Dare I say it lol?   Enjoy it, and don't push yourself too hard!!! ❤️

[Schmeg82]

18 minutes ago, Catwoman73 said:

I'm glad you're feeling a bit better, @Schmeg82.  Sounds like you may be hitting a window?!  Dare I say it lol?   Enjoy it, and don't push yourself too hard!!! ❤️

KNOCKS ON WOOD 😂 I hope so! I’m happy with even a little relief!!! 

[Willy]

@Schmeg82 Happy it’s a better day for you. Hope it sticks around for awhile.

[Schmeg82]

Well I definitely spoke to soon, last night was rough, I did manage to get out and go to the ball fields with my husband and friends but it was to much for me.  I was very weak and shaky and just felt sick, I was trying to coach my team and be a part of everything but I had to go lay in my husbands truck for a while.  I felt better after I did that and after dark I calmed down a bit.  I’m glad I went and got out but still discouraged I can’t even enjoy that.  
 

woke up more relaxed today but upon feeding horses realized I’m very weak and shaky again.  A bit light headed.  My teeth have even been pulsating lately that’s strange.  Have tight chest/throat again too, hope it subsides.  I’m going to try and relax a lot today.

[Catwoman73]

Well, it was a baby window, but a window nonetheless... I hope you managed to enjoy the time you did have feeling a bit better!

 

2 hours ago, Schmeg82 said:

My teeth have even been pulsating lately that’s strange.  Have tight chest/throat again too, hope it subsides.  

 

This is the stuff I experience when I'm at my worst, and is often brought on for me by too much physical OR mental activity.  I described it to my husband like this- I feel like my chest, neck and head are a balloon that has been overfilled, and it's just about to burst.  In order to keep these symptoms at bay, I literally have to sit around like a slug, doing absolutely nothing, which is obviously not happening.  I've learned to cope by pacing myself- I do what is meaningful to me (and the necessary stuff), and that's it.  I can sense when these sensations are just barely starting to kick in, and I lie down immediately.  It's frustrating that these symptoms are in charge and I'm NOT lol, but doing things this way seems to keep me relatively level.  

 

I know it's more complicated for you, with horses to feed, etc, but trying to find a daily routine that doesn't exacerbate things might be worth considering for you.  It may mean backing off on some of the things you want to do, but that's ok.... all this is temporary.  It sounds like heading out with your husband and friends last night was too much, so live and learn.  Take a break from that while you're feeling this unwell- use that time while he's out to fully rest.  I know it sucks- I miss seeing friends regularly.  But it's just not worth it if it causes a massive crash.  Save those visits with friends for important events, like birthdays.  Those things are worth crashing for!

[Schmeg82]

22 hours ago, Catwoman73 said:

Well, it was a baby window, but a window nonetheless... I hope you managed to enjoy the time you did have feeling a bit better!

 

 

This is the stuff I experience when I'm at my worst, and is often brought on for me by too much physical OR mental activity.  I described it to my husband like this- I feel like my chest, neck and head are a balloon that has been overfilled, and it's just about to burst.  In order to keep these symptoms at bay, I literally have to sit around like a slug, doing absolutely nothing, which is obviously not happening.  I've learned to cope by pacing myself- I do what is meaningful to me (and the necessary stuff), and that's it.  I can sense when these sensations are just barely starting to kick in, and I lie down immediately.  It's frustrating that these symptoms are in charge and I'm NOT lol, but doing things this way seems to keep me relatively level.  

 

I know it's more complicated for you, with horses to feed, etc, but trying to find a daily routine that doesn't exacerbate things might be worth considering for you.  It may mean backing off on some of the things you want to do, but that's ok.... all this is temporary.  It sounds like heading out with your husband and friends last night was too much, so live and learn.  Take a break from that while you're feeling this unwell- use that time while he's out to fully rest.  I know it sucks- I miss seeing friends regularly.  But it's just not worth it if it causes a massive crash.  Save those visits with friends for important events, like birthdays.  Those things are worth crashing for!

I’m trying to learn to pace myself but some days it’s hard, I have been doing a few clients again at home to help out with bills, I still have the barn to take care of daily and I’m trying to get out of the house, I don’t want to develope agoraphobia again and be afraid to go anywhere.  I think next time I go to softball I’ll spend more time in my husbands truck and just go out occasionally and watch.  
 

I’m not even excited about birthdays, mine is coming up in less than a couple weeks and I could care less.  I honestly hope everyone forgets so I don’t have to do anything.  
 

I’m struggling again today, just tired, weak and gi issues bad.  Light headed but managed to clean the barn this morning, it wasn’t to hot yet thankfully.  
 

one thing that was nice yesterday was we we got some massive storms that rolled through and it was dark & storming, I lit a candle and cuddled up on the couch with my dog and read my book.  That was so relaxing.  I’m hoping it happens again today!  I hate when it’s sun shining and I’m stuck inside, I do sit in my backyard all day if I can, but it gets hot.

 

oh and BTW @Catwoman73 I got my blood work back, I raised my ferritin from 10-23 but my saturation is still only 15.%

I raised my B12 from 200-300ish through diet.  (I think) but I was shocked my fasting glucose was 100 😳 I have barely been eating any sugar, guess it’s just my age and the damage already done.  My liver function is a little on the low end.  Everything else looked pretty normal. 

[Catwoman73]

2 hours ago, Schmeg82 said:

one thing that was nice yesterday was we we got some massive storms that rolled through and it was dark & storming, I lit a candle and cuddled up on the couch with my dog and read my book.  That was so relaxing.  I’m hoping it happens again today!  I hate when it’s sun shining and I’m stuck inside, I do sit in my backyard all day if I can, but it gets hot.

 

This is awesome!  Rituals are the best- so comforting.  I often advise members to find things that give them a sense of calm and safety, and do those things often.  Lying in bed watching horror movies does it for me lol!  I've definitely gotten that same sense from painting lately, though it takes such concentration, I can only do it for about 30 minutes at a time. 

 

2 hours ago, Schmeg82 said:

oh and BTW @Catwoman73 I got my blood work back, I raised my ferritin from 10-23 but my saturation is still only 15.%

I raised my B12 from 200-300ish through diet.  (I think) but I was shocked my fasting glucose was 100 😳 I have barely been eating any sugar, guess it’s just my age and the damage already done.  My liver function is a little on the low end.  Everything else looked pretty normal. 

 

At least you're trending in the right direction- you're obviously doing everything right!  As for the fasting glucose, are you getting enough fibre, and keeping your intake of high glycemic index carbs low in general?  That may help.  And we have seen people around here complete their tapers, and reverse T2 diabetes, so you can certainly be hopeful that your sugars will improve as you taper. 

[Schmeg82]

32 minutes ago, Catwoman73 said:

 

This is awesome!  Rituals are the best- so comforting.  I often advise members to find things that give them a sense of calm and safety, and do those things often.  Lying in bed watching horror movies does it for me lol!  I've definitely gotten that same sense from painting lately, though it takes such concentration, I can only do it for about 30 minutes at a time. 

 

 

At least you're trending in the right direction- you're obviously doing everything right!  As for the fasting glucose, are you getting enough fibre, and keeping your intake of high glycemic index carbs low in general?  That may help.  And we have seen people around here complete their tapers, and reverse T2 diabetes, so you can certainly be hopeful that your sugars will improve as you taper. 

Yah it’s crazy all that this stuff is messing with.  I barely eat sugar but I do eat some carbs I have to especially with the outdoor work I do.  I’ve been very lethargic and weak/shaky again, today my lips turned pale and blue but my oxygen on my watch is fine, BP is fine so I’m not too worried, hoping it’s just another withdrawal symptom, it’s happened before.  

[Catwoman73]

I have episodes of cyanosis as well- it all started with covid for me!  I do still wonder if some of what you are going through is related to your covid infection.  It all just sounds so familiar to me!!!

[Schmeg82]

7 minutes ago, Catwoman73 said:

I have episodes of cyanosis as well- it all started with covid for me!  I do still wonder if some of what you are going through is related to your covid infection.  It all just sounds so familiar to me!!!

I wonder now too.  I had Covid dec 22-jan 10ish.   But my withdrawal symptoms started the same exact time, I remember my first symptoms in January where my emotions were all over the place, cried for no reason over happy stuff, sad stuff, ect,  then the extreme blood sugar drops and panic.  The vision and nausea started early February for me, tremors and twitches started mid Feb.  heart rate/palpitations and arrhythmia started end of February along with exercise intolerance, morning cortisol rushes/adrenaline rushes.  
 

so what do the blue lips mean? My oxygen was 94-95 when I checked, my BP drops low sometimes too, 90/60s which is super low for me.  My HR was 73, I was super cold though also.  I don’t think my iron deficiency would cause all of this.  Probably doesn’t help though.  I wonder if this has something to do with temperature regulation?  I’m always cold.

[Willy]

Just wanted to check in and see how your week is going?

[Schmeg82]

13 hours ago, Willy said:

Just wanted to check in and see how your week is going?

Thanks for Checking on me.  I’ve been pretty much the same, no better no worse.  Still in this bad wave.  Been out trying to do things though and fighting through symptoms rather then laying in bed all day.  
 

hope you’re doing okay

[Catwoman73]

On 8/23/2024 at 1:48 PM, Schmeg82 said:

 

so what do the blue lips mean? My oxygen was 94-95 when I checked, my BP drops low sometimes too, 90/60s which is super low for me.  My HR was 73, I was super cold though also.  I don’t think my iron deficiency would cause all of this.  Probably doesn’t help though.  I wonder if this has something to do with temperature regulation?  I’m always cold.

 

My best guess- I think it's all related to dysautonomia- autonomic nervous system dysfunction.  There are different types of dysautonomia- I definitely fall into the category of orthostatic hypotension.  Most long covid patients have POTS.  Do some reading on these conditions- it might sound very familiar.  My BP can drop extremely low- I've been in the high 60s/high 30s in the past.  I don't get the heart rate spikes- if anything, mine just randomly plummets into the 30s.  So bizarre.  So I think the cyanosis is connected to all of this.  Though there are other theories- blood vessel inflammation is my next best guess.  But it's all guesses at this point.  I've had ALL the cardiac testing, and a CT scan of my lungs- there's nothing wrong that would explain it.  My cyanotic episodes has become a joke in my ballet class- the girls are always keeping an eye on me, and telling me to go rest when I start turning blue lol.  I know it's not so funny, but you've gotta laugh.  I'd rather laugh than cry.

[Schmeg82]

39 minutes ago, Catwoman73 said:

 

My best guess- I think it's all related to dysautonomia- autonomic nervous system dysfunction.  There are different types of dysautonomia- I definitely fall into the category of orthostatic hypotension.  Most long covid patients have POTS.  Do some reading on these conditions- it might sound very familiar.  My BP can drop extremely low- I've been in the high 60s/high 30s in the past.  I don't get the heart rate spikes- if anything, mine just randomly plummets into the 30s.  So bizarre.  So I think the cyanosis is connected to all of this.  Though there are other theories- blood vessel inflammation is my next best guess.  But it's all guesses at this point.  I've had ALL the cardiac testing, and a CT scan of my lungs- there's nothing wrong that would explain it.  My cyanotic episodes has become a joke in my ballet class- the girls are always keeping an eye on me, and telling me to go rest when I start turning blue lol.  I know it's not so funny, but you've gotta laugh.  I'd rather laugh than cry.

So I wonder if this is what I’m experiencing also.  Because when I start to talk/do anything active a lot I feel like I am running out of air and my lips turn pale sometimes blue.  This is new, just started getting bad the last month or so.  But I can clean my whole barn most days with no problem and my HR doesn’t go over 130 most of the time, so weird.  My BP has been on the lower range but not super low.  90/60 at lowest.  
 

what do I do for this? Should I get more testing done too? 

[Schmeg82]

So I haven’t had any updates lately because things are pretty much the same for me, I’m still in this awful wave, I’ve been trying so hard to do more things and go out in public more, drive places, which I do well in the morning but every evening like clock work the tremors set in, I get hyper/racy/anxious almost manic feeling sometimes, thankfully it doesn’t last long but it’s a horrible feeling.  Then by 8-9pm I’m just tired.

 

funny story though, I went to the pharmacy today to pick up my pills and I decided to have a chat with the pharmacist, I told him my whole story and he said I need to switch over to another antidepressant immediately or my withdrawal symptoms will never go away.  That I’m probably so used to the Paxil my body won’t get better until I either go up in strength of it or on to another SSRI at a higher strength.  😳😳😳😳

I told him my goal is to come off completely and he kind of gave me this look like I was joking…and that it absolutely won’t work with what I’m doing.  He said nothing will fix me but another drug. 🤦🏼‍♀️🤯😞

 

I have often contenplated bridging to Prozac or another ssri at the same strength, but I’m terrified of feeling even worse then I am

Now.  I’ve also thought, well if I just come off faster and rip the bandaid off now, I’ll still be suffering but for less time maybe? 
 

then there’s always this hope I may still stabilize, but I’m loosing hope as I’m getting worse again.  I’m at a total loss.

[LostInCanada]

6 minutes ago, Schmeg82 said:

contenplated bridging to Prozac or another ssri at the same strength, but I’m terrified of feel

I attended a zoom seminar with Dr Horowitz and he said bridging to another drug just doesn't work. 

Many of us have tried doing the prozac bridge. Check out Erell or Go2zero. Go2zero said it was his worst decision. Erell went through 2 years of absolute hell.

No surprise with the pharmacist...he would definitely be taking a pay cut if everyone got off SSRIs etc.

 

[Catwoman73]

Since cyanosis can be a very serious symptom of cardiac and/or lung problems, it might be worthwhile.  Testing I would recommend would include basic spirometry for your lungs, a CT scan of your lungs if possible (even just a chest x-ray would be somewhat helpful), an echocardiogram, holter monitor (I had mine for two weeks), cardiac stress test, and if they're willing to do it, a MIBI scan.  If all of that comes out clean, you can rest assured that you have nothing catastrophic causing it.  Finally, a tilt table test is diagnostic for many forms of dysautonomia, so it is worth pursuing as well. 

 

I've had all of these tests done.  I have a handful of issues that do not explain all of my symptoms, but at least we are aware of them now, which is a good thing.  I do have orthostatic hypotension for sure.  I also have a small plaque in one of my coronary arteries, I have an arrhythmia called Wenckebach phenomenon that causes me to drop heartbeats regularly (like, almost 800 times in my two week holter monitor!).  They say that doesn't cause the orthostatic hypotension, but I still think it might be contributing. 

 

1 minute ago, Schmeg82 said:

funny story though, I went to the pharmacy today to pick up my pills and I decided to have a chat with the pharmacist, I told him my whole story and he said I need to switch over to another antidepressant immediately or my withdrawal symptoms will never go away.  That I’m probably so used to the Paxil my body won’t get better until I either go up in strength of it or on to another SSRI at a higher strength.  😳😳😳😳

I told him my goal is to come off completely and he kind of gave me this look like I was joking…and that it absolutely won’t work with what I’m doing.  He said nothing will fix me but another drug. 🤦🏼‍♀️🤯😞

 

I have often contenplated bridging to Prozac or another ssri at the same strength, but I’m terrified of feeling even worse then I am

Now.  I’ve also thought, well if I just come off faster and rip the bandaid off now, I’ll still be suffering but for less time maybe? 
 

then there’s always this hope I may still stabilize, but I’m loosing hope as I’m getting worse again.  I’m at a total loss.

 

If you are in tolerance, yes, increasing your dose might work to reduce symptoms.  But it might not, and the concern is that jumping to a larger dose might result in a hypersensitivity reaction.  And bridging comes with its own set of risks, as you know.  Only you can decide what is best for you.  That being said, cold turkey or a super rapid taper could make things significantly worse too.  There have been a handful of people here who have done that, and some have even felt better for a short while.  But then the wheels completely fell off. 

 

Why don't you try a brassmonkey style taper?  This would keep you moving forward in tiny increments.  I'm doing 5% per month (so, I divide my 5% by 4, dropping 1.25% per week), then I hold for two weeks.  It's going ok, and is definitely preferable to the bigger drops.  You can always stop and updose by small increments if things get worse.

 

It sounds like your pharmacist is trying to keep you on these drugs for life lol... how sad.  

 

I would also consider the timing of your covid infection when making decisions.  Your symptoms are so eerily familiar to me, I really do wonder if some of what you are going through isn't related to long covid.  I really do believe that your rapid taper and resulting instability could have made you more susceptible to long covid.  For me, it was burnout.  Anything that affects the nervous system makes you susceptible.  

[Schmeg82]

19 minutes ago, Catwoman73 said:

Since cyanosis can be a very serious symptom of cardiac and/or lung problems, it might be worthwhile.  Testing I would recommend would include basic spirometry for your lungs, a CT scan of your lungs if possible (even just a chest x-ray would be somewhat helpful), an echocardiogram, holter monitor (I had mine for two weeks), cardiac stress test, and if they're willing to do it, a MIBI scan.  If all of that comes out clean, you can rest assured that you have nothing catastrophic causing it.  Finally, a tilt table test is diagnostic for many forms of dysautonomia, so it is worth pursuing as well. 

 

I've had all of these tests done.  I have a handful of issues that do not explain all of my symptoms, but at least we are aware of them now, which is a good thing.  I do have orthostatic hypotension for sure.  I also have a small plaque in one of my coronary arteries, I have an arrhythmia called Wenckebach phenomenon that causes me to drop heartbeats regularly (like, almost 800 times in my two week holter monitor!).  They say that doesn't cause the orthostatic hypotension, but I still think it might be contributing. 

 

 

If you are in tolerance, yes, increasing your dose might work to reduce symptoms.  But it might not, and the concern is that jumping to a larger dose might result in a hypersensitivity reaction.  And bridging comes with its own set of risks, as you know.  Only you can decide what is best for you.  That being said, cold turkey or a super rapid taper could make things significantly worse too.  There have been a handful of people here who have done that, and some have even felt better for a short while.  But then the wheels completely fell off. 

 

Why don't you try a brassmonkey style taper?  This would keep you moving forward in tiny increments.  I'm doing 5% per month (so, I divide my 5% by 4, dropping 1.25% per week), then I hold for two weeks.  It's going ok, and is definitely preferable to the bigger drops.  You can always stop and updose by small increments if things get worse.

 

It sounds like your pharmacist is trying to keep you on these drugs for life lol... how sad.  

 

I would also consider the timing of your covid infection when making decisions.  Your symptoms are so eerily familiar to me, I really do wonder if some of what you are going through isn't related to long covid.  I really do believe that your rapid taper and resulting instability could have made you more susceptible to long covid.  For me, it was burnout.  Anything that affects the nervous system makes you susceptible.  

Sounds like I need to get a referral to a cardiologist I guess? With the long covid theory, I didn’t start getting these blue lips/weakness/not enough air feeling bad until recently, I’d say June was when I started getting really bad symptoms and my withdrawal started in January, I had Covid at the end of December.  I feel like I keep getting significantly worse.  I do check my oxygen on my watch when I have the blue lips and it’s never been below 95, usually stays around 97.  My BP has dropped lower then usually but I’m also eating healthier and have lost 30 lbs.  I check my ecg thing on my watch which I know is only one lead and never any issues.  My blood work all just came back pretty good.  I’m at a loss right now… 

 

I also go back to 21 years on the drug is this still my original withdrawal symptoms.  This is all so confusing and horrible.  (For all of us). I just feel like I don’t know the best approach right now, everyone says time but I feel like that’s for when you’re off the drug, however it willl take me years to microtaper and I cannot feel this horrible for years.  

[Willy]

21 minutes ago, Schmeg82 said:

what do I do for this? Should I get more testing done too

You seem healthy. I don’t think you need to put yourself through more stressful situations at the moment. You’re dealing with the poison that is Paxil. You’ll survive, recover and heal just keep fighting.

 

19 minutes ago, Schmeg82 said:

I have often contenplated bridging to Prozac or another ssri at the same strength, but I’m terrified of feeling even worse then I am

I think introducing your brain to new drugs is a bad idea. That’s basically what I did for benzo wd and it backfired and landed me on 3 drugs . I didn’t know any better at the time. You have a lot of knowledge and resources now that prove tapering off from Paxil is definitely possible. I believe you should stick to your plan with a slow, steady and flexible tapering schedule.

 

34 minutes ago, Schmeg82 said:

I’ve also thought, well if I just come off faster and rip the bandaid off now, I’ll still be suffering but for less time maybe

I thought about doing this when I signed up to this forum and was quickly reminded it was a bad idea. I also took this approach with a benzo and as I said above it landed me on 3 drugs. The pain was so intense that l barely survived it.

 

9 minutes ago, Schmeg82 said:

I also go back to 21 years on the drug is this still my original withdrawal symptoms.  This is all so confusing and horrible.  (For all of us). I just feel like I don’t know the best approach right now, everyone says time but I feel like that’s for when you’re off the drug, however it willl take me years to microtaper and I cannot feel this horrible for years

You’re doing the best approach now which can be proven from people on this forum. I also have doubts and worry about feeling like this for years but we have only one choice and that is to go down on the meds at a responsible pace. I think you will start to feel better as the dose gets lower. Please hang in there and give your plan some time before making any drastic moves. You will get some peace and relief soon

[LostInCanada]

32 minutes ago, Schmeg82 said:

it willl take me years to microtaper and I cannot feel this horrible for years.  

We are all feeling this. But focusing on it will not help. I always hear Emonda quoting ChessieCat- don't look at how far you have to go but at how far you have come. Just knowing the truth about these drugs means you have come a long way. ❤️ 

Lots of great advice and words of wisdom from @Willy Healing is happening. 

 

[Catwoman73]

4 hours ago, Schmeg82 said:

Sounds like I need to get a referral to a cardiologist I guess? With the long covid theory, I didn’t start getting these blue lips/weakness/not enough air feeling bad until recently, I’d say June was when I started getting really bad symptoms and my withdrawal started in January, I had Covid at the end of December.  I feel like I keep getting significantly worse.  I do check my oxygen on my watch when I have the blue lips and it’s never been below 95, usually stays around 97.  My BP has dropped lower then usually but I’m also eating healthier and have lost 30 lbs.  I check my ecg thing on my watch which I know is only one lead and never any issues.  My blood work all just came back pretty good.  I’m at a loss right now… 

 

 

 

It didn't start right away for me, either.  I was about 6-7 months into my long covid journey when I started noticing it.  In hindsight, I know I was pushing myself way too hard in the early days, not understanding that what I needed was rest.  I thought that if I just kept exercising, and doing everything I used to do, I would get better.  Knowing what I now know about ME/CFS (which essentially has  the same symptom profile as neurological long covid), the unfortunate reality is that  I was probably in a nasty push/crash cycle that did nothing but contribute to me developing a newer, lower baseline.  

 

I'm the same- bloodwork is normal (except for liver enzymes and cholesterol- thank you antidepressants), chest x-ray normal, CT of my chest normal, MIBI scan essentially normal (with one small coronary artery plaque), stress test normal.  The only abnormal test for me was my holter monitor, and the abnormalities noted would not cause my symptoms.  ECG and SpO2 on my watch are always normal too (though SpO2 does sit lower than it did prior to covid in general, just not at a dangerous level). 

 

I know it can be extremely hard to accept that you can feel this awful, and have every test come back normal.  Believe me, I spent many, many months desperately searching for answers, and getting none.  I'm totally in favour of proceeding with a cardiac workup when having cyanotic episodes, only to make sure there isn't anything more sinister going on (I'm cautious here- after working in ICU for 25 years, trust me when I say you don't want to be that person who ignores potential cardiac symptoms), but my suspicion is that everything will show that you are perfectly 'healthy,' and this is likely all related to nervous system anomalies.  I'm still on my own journey of acceptance with respect to this- when I'm at my worst, I'm simply blown away that they can't figure it out.  Mostly these days though- I'm just grateful to know that I'm not likely to have some massive coronary event, in spite of what it might look and feel like.  That's the purpose of testing- peace of mind. 

 

4 hours ago, Schmeg82 said:

I also go back to 21 years on the drug is this still my original withdrawal symptoms.  This is all so confusing and horrible.  (For all of us). I just feel like I don’t know the best approach right now, everyone says time but I feel like that’s for when you’re off the drug, however it willl take me years to microtaper and I cannot feel this horrible for years.  

 

I know- it's a scary prospect, knowing it could take years to taper safely.  I refuse to even calculate how long it's going to take me lol... it's definitely more useful to just look at every micro step as a win, rather than focussing on the big picture.  

 

When I cold turkeyed 3 meds at once, I felt pretty horrible for years.  Seven-ish years, I would say.  So I can tell you from experience that a cold turkey or rapid taper is not the answer to getting through this any faster.  I was in withdrawal through my pregnancy, and through my daughter's early years- I have a lot of sadness about that.  Unfortunately, on this journey, we all lose time. It's just better to lose that time tapering in a healthy way than dealing with a severe protracted withdrawal from tapering too fast.  You'll have to try to take my word for it on that one, I suppose!

 

It's totally normal to mourn the loss of what you thought your life would look like at this point.  Heaven knows, I should be planning my big retirement trip right now- I was planning to climb Mount Kilimanjaro!  Obviously, that dream is completely dead now- I have no idea if I will ever be well enough to do something like that again.  But I think, even when we are suffering, we can find meaning and purpose.  We can find new things to bring us joy.  From that standpoint, having our lives turned upside down, even through no fault of our own, can be viewed as an opportunity.  At least that's how I'm choosing to see it.  An opportunity to come out of this more resilient, and more in touch with what we do want from our lives on the other side. We can find new things to make us happy- maybe even happier than we ever were before this mess!

 

I know you're having a rough time right now, @Schmeg82, and feeling super discouraged.  I wish I could just give you a giant hug!  Keep the faith... we're right here with you.  Lots of love, friend...❤️

 

 

[Schmeg82]

On 8/29/2024 at 6:45 PM, Catwoman73 said:

 

It didn't start right away for me, either.  I was about 6-7 months into my long covid journey when I started noticing it.  In hindsight, I know I was pushing myself way too hard in the early days, not understanding that what I needed was rest.  I thought that if I just kept exercising, and doing everything I used to do, I would get better.  Knowing what I now know about ME/CFS (which essentially has  the same symptom profile as neurological long covid), the unfortunate reality is that  I was probably in a nasty push/crash cycle that did nothing but contribute to me developing a newer, lower baseline.  

 

I'm the same- bloodwork is normal (except for liver enzymes and cholesterol- thank you antidepressants), chest x-ray normal, CT of my chest normal, MIBI scan essentially normal (with one small coronary artery plaque), stress test normal.  The only abnormal test for me was my holter monitor, and the abnormalities noted would not cause my symptoms.  ECG and SpO2 on my watch are always normal too (though SpO2 does sit lower than it did prior to covid in general, just not at a dangerous level). 

 

I know it can be extremely hard to accept that you can feel this awful, and have every test come back normal.  Believe me, I spent many, many months desperately searching for answers, and getting none.  I'm totally in favour of proceeding with a cardiac workup when having cyanotic episodes, only to make sure there isn't anything more sinister going on (I'm cautious here- after working in ICU for 25 years, trust me when I say you don't want to be that person who ignores potential cardiac symptoms), but my suspicion is that everything will show that you are perfectly 'healthy,' and this is likely all related to nervous system anomalies.  I'm still on my own journey of acceptance with respect to this- when I'm at my worst, I'm simply blown away that they can't figure it out.  Mostly these days though- I'm just grateful to know that I'm not likely to have some massive coronary event, in spite of what it might look and feel like.  That's the purpose of testing- peace of mind. 

 

 

I know- it's a scary prospect, knowing it could take years to taper safely.  I refuse to even calculate how long it's going to take me lol... it's definitely more useful to just look at every micro step as a win, rather than focussing on the big picture.  

 

When I cold turkeyed 3 meds at once, I felt pretty horrible for years.  Seven-ish years, I would say.  So I can tell you from experience that a cold turkey or rapid taper is not the answer to getting through this any faster.  I was in withdrawal through my pregnancy, and through my daughter's early years- I have a lot of sadness about that.  Unfortunately, on this journey, we all lose time. It's just better to lose that time tapering in a healthy way than dealing with a severe protracted withdrawal from tapering too fast.  You'll have to try to take my word for it on that one, I suppose!

 

It's totally normal to mourn the loss of what you thought your life would look like at this point.  Heaven knows, I should be planning my big retirement trip right now- I was planning to climb Mount Kilimanjaro!  Obviously, that dream is completely dead now- I have no idea if I will ever be well enough to do something like that again.  But I think, even when we are suffering, we can find meaning and purpose.  We can find new things to bring us joy.  From that standpoint, having our lives turned upside down, even through no fault of our own, can be viewed as an opportunity.  At least that's how I'm choosing to see it.  An opportunity to come out of this more resilient, and more in touch with what we do want from our lives on the other side. We can find new things to make us happy- maybe even happier than we ever were before this mess!

 

I know you're having a rough time right now, @Schmeg82, and feeling super discouraged.  I wish I could just give you a giant hug!  Keep the faith... we're right here with you.  Lots of love, friend...❤️

 

 

Thank you for everything and all the advice.  I’m having a hard time still even finding things I can enjoy, I’ve been trying to go out and do more stuff only to find out I feel so sick and off when I do.  Even just hanging around the ball field talking to people can be a challenge for me right now.  But I’m still trying,  I figure if I’m going to feel like this I’m not going to do it living in my bed.  I refuse to do that.  
 

I will look into getting all the testing done soon.  Meanwhile just praying for some relief and to get out of this horrible wave.  
 

 

[Sebas]

On 8/29/2024 at 7:09 PM, Schmeg82 said:

I went to the pharmacy today to pick up my pills and I decided to have a chat with the pharmacist, I told him my whole story and he said I need to switch over to another antidepressant immediately or my withdrawal symptoms will never go away.  That I’m probably so used to the Paxil my body won’t get better until I either go up in strength of it or on to another SSRI at a higher strength.  😳😳😳😳

I told him my goal is to come off completely and he kind of gave me this look like I was joking…and that it absolutely won’t work with what I’m doing.  He said nothing will fix me but another drug. 🤦🏼‍♀️🤯😞

 

From reading tons of stories in the last years i seriously think they are doing this out of strategic financial reasons. But this website will prove to be an oil slick for more and more people taking control in their own hands. 

 

In stead of contemplating changing tapering strategy by bridging or going faster (which are both not recommended) acknowledge that time is our friend. CNS will recover eventually, that's the self correcting ability of the human body. We need patience and perseverance to conquer. P2 ✌️

 

Bye Sebas

[Catwoman73]

15 hours ago, Schmeg82 said:

Thank you for everything and all the advice.  I’m having a hard time still even finding things I can enjoy, I’ve been trying to go out and do more stuff only to find out I feel so sick and off when I do.  Even just hanging around the ball field talking to people can be a challenge for me right now.  But I’m still trying,  I figure if I’m going to feel like this I’m not going to do it living in my bed.  I refuse to do that.  

 

Socializing is absolutely EXHAUSTING.  I am very strategic with my social time- I prefer small gatherings, as they are less overwhelming.  And I only attend bigger gatherings when they are really meaningful to me.  Like weddings, graduations, birthday parties.  And even then, if I am attending something like that, I have days of rest both before and after.  I suppose in some ways it's easier for me- I'm a very introverted person.  If you are typically extroverted and super social, I can see how this would be really tough on you.  

 

I've had to try new things to find any joy.  The painting has helped.  I'm looking at taking some classes on Udemy as well- maybe sewing, more art stuff.  I love to read, but can only do it for short periods without flaring my headache.  Same with my painting.  You said you like to draw- maybe try adding that back into your daily routine!  Since my ability to do things is very limited by symptom flares, I've had to set myself up in blocks of 30-60 minutes.  Paint for half an hour, lie down and watch a TV show for an hour, then read a book for half an hour, then take a nap.  Then float in the pool for a while, then maybe paint a bit more, then another TV show, then help with dinner etc.  This is very different from how I used to manage my life- I used to be an intensely focused person, who would read for a whole day, only breaking to eat.  And I don't like having my flow interrupted so often lol, but it is what it is.  Finding a system that allows me to do things I enjoy in spite of everything that's going on has helped me feel a bit more happiness. Maybe something like that would work for you as well!

[Dee12h]

@Schmeg82 Did you ever start the iron pills? 23 is still really low, & many of your symptoms sound like low iron. Not telling you to take it, just curious if you ever did. 

[Schmeg82]

19 minutes ago, Dee12h said:

@Schmeg82 Did you ever start the iron pills? 23 is still really low, & many of your symptoms sound like low iron. Not telling you to take it, just curious if you ever did. 

Funny you say this today, I went to my doctors appointment this morning and she told me i needed to start taking iron every day, my ferritin was 23, iron 47 and saturation was 15 which was low. She said I have iron deficiency without anemia.  So I bought some iron with vitamin C in it and I’ll try it tonight.  Weird thing is I’ve had iron numbers like this for years and never had symptoms so to me it still seems like it could be withdrawal but then I wonder if the SSRI possibly masked my low iron symptoms? 

[Dee12h]

10 minutes ago, Schmeg82 said:

Funny you say this today, I went to my doctors appointment this morning and she told me i needed to start taking iron every day, my ferritin was 23, iron 47 and saturation was 15 which was low. She said I have iron deficiency without anemia.  So I bought some iron with vitamin C in it and I’ll try it tonight.  Weird thing is I’ve had iron numbers like this for years and never had symptoms so to me it still seems like it could be withdrawal but then I wonder if the SSRI possibly masked my low iron symptoms? 

IDK. I’m still trying to figure this out, but I’ve been on iron for 2 weeks & have definitely noticed improvement in my mood & sleep. My ferritin was 18. I only take like 15-20mg which is not enough but more makes me feel almost manic. I’m going slowly. I joined the Iron Protocol group on FB, and the symptoms people have are SO similar to WD! It’s crazy. My theory is those of us who are already low are more susceptible to worse WD symptoms. And the meds drain our minerals. But I do know some in WD can’t handle it. 

What the are you trying? I’m on Vitron-C. I have simply heme, but many said it gave them anxiety so scared to try it. (My D is low as well, but I haven’t started that yet. Just making sure my electrolytes are good RN.)

[Schmeg82]

I picked up the vitron - C as well, I got the 65mg one.  I take vitamin D with no issues and B12.  My b12 is low too.  300 now, it was at 200.  My doctor told me to take it at night, did you have any symptoms from it?  At this point I’m willing to do anything that will help.  She said my lips turning pale/blue and exercise intolerance is definitely from my low iron.  (Which that stuff didn’t start bad until a couple months ago).  I have the heme iron as well but haven’t taken it yet.  
 

@Dee12h