LostInCanada: Need help and direction to taper off Paroxetine

[Soup]

Once our CNS gets jostled it can take a long time to settle again . I am so sorry it is still so hard I understand . I often wonder once we go offline with our CNS our bodies are like hey I wanted to let you know I don’t really like that drug after all . Just my theory but a thought anyway 

[LostInCanada]

Thanks @Soup. It just sucks as you know. It has to get better for us both. Our bodies want to be better. Just wish it was an easy equation to fix. ❤️

[RachelSusan]

@LostInCanada Hi I wanted to stop by and say hello.  It looks like you have been waiting to stabilize for a while. I wanted to reassure you that there are many of us here in a protracted withdrawal, and you are not alone. I am currently in one right now. It's hard to believe that we will recover, but we will. 

 

I too would suggest that you are symptom free for a long while before you start to taper.

 

I feel bad that you are going through this and hope that all your symptoms go away very soon.

[LostInCanada]

@RachelSusan thanks for stopping by and the encouraging words. Sorry to see you are still struggling too. There are moments that I think I have accepted my withdrawal and other times I am still in disbelief. Just happy to have this community and support from people like you. ♥️

[AmitV]

On 2/6/2023 at 5:27 PM, Soup said:

Hi @LostInCanada a fellow Canadian here on this journey as well just saying hi ( I to am located on the Island ) just wanted to let you know lots here to support you 

Any support available one province east? Truly in a bad place. Took Escitalopram only for 6 weeks, gave me dizziness/vertigo for 5 weeks. 

doc said I got jump off with 3 taper doses. Horrible idea. No issues for 6 days off it, dizziness went down nicely.

 

Then on Day 7 and onward:

- Insomnia

- High Heart rates

- Vivid dreams

- Dizziness went back up

- Suicidal Ideations

- Clogged Ears and Tinnitus

- Brain Zaps

- Visual Snow

- Brain Fog

- Anxiety

etc.

 

4 weeks of withdrawal done. Most of the above have gotten better, some subsided but dizziness/vertigo is taking it’s sweet time!

[LostInCanada]

23 minutes ago, AmitV said:

Any support available one province east? Truly in a bad place. Took Escitalopram only for 6 weeks, gave me dizziness/vertigo for 5 weeks. 

doc said I got jump off with 3 taper doses. Horrible idea. No issues for 6 days off it, dizziness went down nicely.

 

Then on Day 7 and onward:

- Insomnia

- High Heart rates

- Vivid dreams

- Dizziness went back up

- Suicidal Ideations

- Clogged Ears and Tinnitus

- Brain Zaps

- Visual Snow

- Brain Fog

- Anxiety

etc.

 

4 weeks of withdrawal done. Most of the above have gotten better, some subsided but dizziness/vertigo is taking it’s sweet time!

There is no rushing the process and no easy solution. My hubby had to quit work to care for me. I am still trying to stabilize. I am happy to have reinstated due to the dark place I was in but I hate being on this drug. Do you have anyone there to support you? I am here for you.

[AmitV]

33 minutes ago, LostInCanada said:

There is no rushing the process and no easy solution. My hubby had to quit work to care for me. I am still trying to stabilize. I am happy to have reinstated due to the dark place I was in but I hate being on this drug. Do you have anyone there to support you? I am here for you.

Yes, my wife has been very kind and loving to me this entire time. She took some time off from work to support me. Unfortunately, she has to return to work mid April, so I’m really hoping and praying this will blow over by then. 
 

Im glad you reinstated. 30mg to 0 in 4 weeks is so fast. I’m sorry you got that advice from your doctor. It is so sad, that so many online resources lie about withdrawals. I learned my lesson after I stopped and then found this resource. Never came up in any of the Google searches when I was looking to stop.

 

As for yourself, take your longest sweetest time to taper down. Right now I wouldn’t even consider changing your dose at all until all previous effects have subsided. 20 years is a very very long time, I actually wouldn’t even suggest ever coming off it. Just down to the lowest possible dose, just enough so you don’t get your nervous system in a state of withdrawal shock again. It’s your decision though.

 

Do you have an HR monitor? Are you getting high resting heart rates causing inability to sleep. That’s what it was for me? Propranolol helped me when I was going through that wave of insomnia. I didn’t sleep for 5 nights straight. Then I had nights with 2-3hrs at most, and not even a deep sleep until I got propranolol (beta blocker).

 

I’ve slept a full sleep every night in the last 10-13 days , 5 recent days of which were without propranolol, my high heart rates began to settle down a few days ago. Which is why I’m seeing some hope.

[LostInCanada]

@AmitVso glad your wife is supportive. My hubby got 15 weeks paid by EI for caregiving. Maybe she can check that out if needed. Once stable I will definitely taper. The side effects are awful and increase with time. I don't have a HR monitor. You are fortunate to be sleeping. I have gotten better and almost every night get one 3 hour stretch of sleep lol. That drug propranolol is scary...I am glad you aren't using it anymore. One day at a time. 

[AmitV]

9 minutes ago, LostInCanada said:

@AmitVso glad your wife is supportive. My hubby got 15 weeks paid by EI for caregiving. Maybe she can check that out if needed. Once stable I will definitely taper. The side effects are awful and increase with time. I don't have a HR monitor. You are fortunate to be sleeping. I have gotten better and almost every night get one 3 hour stretch of sleep lol. That drug propranolol is scary...I am glad you aren't using it anymore. One day at a time. 

I know one day at a time. Will get there. Canmore is a small town, buses are free and I have friends here. Should I need something urgent I easily cab or call a friend. I can tell she feels miserable seeing me miserable, but puts up a brave face. She deserves a break.

 

As for propranolol, I only took 5-10mg, it was enough to put my HR to rest. This was also recommended by the psychiatrist in India. It’s a heart medication that’s been around since 1954. People have taken it for their entire life with no long term side effects and does not build tolerance. The only side effect is slight increase in dizziness for 45 mins, which is why I just took at night before bed because there’s no way I could tolerate any more dizziness during the day. You can get your resting HR with a carotid reading manually with your fingers and stop watch. Look up google. If it’s more than 80-85 while laying in bed relaxed, you’re not going to sleep well.

 

Betahistine was another recommendation by him for maintaining balance issues with dizziness. It helps feel grounded and balanced. Again an old medication since the 70’s that people with Ménière’s disease take for their entire life. Minor side effect of a mild headache in the first a few days. It works by increasing blood flow around the vestibular system to help with vertigo and stability. 
 

he gave me nothing that would affect the central nervous system except gravol.

[LostInCanada]

I did use gravol during my worst times that included dry heaving. SSRIs are notorious for ruining REM. I had this sleeping problem for 7 years before this and kept asking if it was the paroxetine. Frustrating. Thankfully I can fall asleep easily, I just wake every 90 minutes. I started taking .25 mg of melatonin and also magnesium biglysinate. I just wanted to mention low vitamin D, low magnesium, b6, b12, b9, b3 and low ferritin can be the reason for anxiety and yet my GP never checked before putting me on Paxil. Years after being on it, a new doctor found I had almost no ferritin (life threatening low) and low vitamin D. 

[AmitV]

13 minutes ago, LostInCanada said:

I did use gravol during my worst times that included dry heaving. SSRIs are notorious for ruining REM. I had this sleeping problem for 7 years before this and kept asking if it was the paroxetine. Frustrating. Thankfully I can fall asleep easily, I just wake every 90 minutes. I started taking .25 mg of melatonin and also magnesium biglysinate. I just wanted to mention low vitamin D, low magnesium, b6, b12, b9, b3 and low ferritin can be the reason for anxiety and yet my GP never checked before putting me on Paxil. Years after being on it, a new doctor found I had almost no ferritin (life threatening low) and low vitamin D. 

Ive really lost faith in GPs. I had absolutely everything checked out. Everything was in the normal range. Not even one test result was outside. I had bloodworks done 3 times each time with different things. I had the doc email me all the reports and I sent them to 2 doctors in my family in India. Until they were completely satisfied that everything had been checked out, they kept asking for additional work up.

 

Its so unfortunate that they miss the very basic stuff. Blood work up and deficiencies are the bare basic stuff.

 

 Yes me too on the melatonin and magnesium.

[Soup]

@AmitV sorry to hear of your having to come here but glad you found this place of support . It’s all So awful  really but at least here people really understand the plight we find ourselves in . 
From one Canadian to another we got this 👍

[getofflex]

On 3/20/2023 at 2:41 PM, LostInCanada said:

Is this a wave? I don't get it. Shakes are getting worse starting 3-4am. They wake me every hour or so. I might get one 3 hour stretch of sleep at night and was waking every 90 minutes but now due to the shakes it is every hour till I get out of bed at 8am. Nausea is back with dizziness. Nothing has changed in dosage since reinstatement November 28. Time change in Canada moved the clocks ahead an hour...I took my drug 15 minutes earlier each day for 4 days to adjust. Crying has increased again. Just want stability. 

Yes, it sounds like you are in a wave.   Your nervous system has been destabilized by the many sudden changes you made to your paroxetine dose since May 2022, and the very fast taper you did last summer.  Are you skipping or forgetting any doses?  Hopefully you are avoiding alcohol, and other mind altering substances?  I will say that seasonal changes can affect us.  Going from winter to spring may be affecting you - it has been affecting me.  Also, changes in diet, routine, traveling, intense exercise, stress, etc, all this can bring on a wave.  

[AmitV]

9 hours ago, Soup said:

@AmitV sorry to hear of your having to come here but glad you found this place of support . It’s all So awful  really but at least here people really understand the plight we find ourselves in . 
From one Canadian to another we got this 👍

Thank you so much for your support. It just makes things that much more difficult when your doctor just refuses to believe that you’re experiencing withdrawals. Yet all tests so far MRI, MRA, Holter, vestibular assesment, blood works have all come clear. 
 

im glad to have found this website and support.

[LostInCanada]

3 hours ago, getofflex said:

Yes, it sounds like you are in a wave.   Your nervous system has been destabilized by the many sudden changes you made to your paroxetine dose since May 2022, and the very fast taper you did last summer.  Are you skipping or forgetting any doses?  Hopefully you are avoiding alcohol, and other mind altering substances?  I will say that seasonal changes can affect us.  Going from winter to spring may be affecting you - it has been affecting me.  Also, changes in diet, routine, traveling, intense exercise, stress, etc, all this can bring on a wave.  

Thanks getofflex. No alcohol, no drugs not even advil, no caffeine. I even slowed down my treadmill before this. Eating lots of fruit and veggies. Routine is stable. No travel. Seasonal change makes sense... amazing how seemingly small things affect us all. ♥️

[AmitV]

11 hours ago, Soup said:

@AmitV sorry to hear of your having to come here but glad you found this place of support . It’s all So awful  really but at least here people really understand the plight we find ourselves in . 
From one Canadian to another we got this 👍

Thank you so much for your wishes. It’s very kind of you. It’s been a difficult one. I’m hoping and praying that this would get better.

[AmitV]

17 hours ago, AmitV said:

Ive really lost faith in GPs. I had absolutely everything checked out. Everything was in the normal range. Not even one test result was outside. I had bloodworks done 3 times each time with different things. I had the doc email me all the reports and I sent them to 2 doctors in my family in India. Until they were completely satisfied that everything had been checked out, they kept asking for additional work up.

 

Its so unfortunate that they miss the very basic stuff. Blood work up and deficiencies are the bare basic stuff.

 

 Yes me too on the melatonin and magnesium.

 

I tried several blue light blocker glasses on Amazon (about 6-7 different ones). These were the absolute best for me. https://a.co/d/1WxrfkJ

[LostInCanada]

Thanks, I ordered some last night that clip on to my glasses. Hope they will help. I will keep these in mind if not. One day closer to healing.🙏

[AmitV]

On 3/23/2023 at 11:33 AM, LostInCanada said:

@RachelSusan thanks for stopping by and the encouraging words. Sorry to see you are still struggling too. There are moments that I think I have accepted my withdrawal and other times I am still in disbelief. Just happy to have this community and support from people like you. ♥️

 

Is there anything that you have discovered that makes your dizziness better? Any OTC medication or prescription medication?

[LostInCanada]

Hi @AmitV I used gravol when I was so dizzy that I was dry heaving or going to throw up. I have used natural organic ginger chewables as well. Some have issues with gravol triggering more WD. Also gravol is contraindicated with some AD and other meds. I use it cautiously. Paroxetine has also caused me to have narrowing angle glaucoma so almost every OTC med is an issue because of this. Hope you had a better day. 

[AmitV]

1 hour ago, LostInCanada said:

Hi @AmitV I used gravol when I was so dizzy that I was dry heaving or going to throw up. I have used natural organic ginger chewables as well. Some have issues with gravol triggering more WD. Also gravol is contraindicated with some AD and other meds. I use it cautiously. Paroxetine has also caused me to have narrowing angle glaucoma so almost every OTC med is an issue because of this. Hope you had a better day. 

 

I tried to have a better day, but it was a challenging one with this constant dizziness. One hour of relief from it would be enough to make me hopeful. But it's constant and nothing works for it.

[LostInCanada]

So sorry to hear this. I remember days of sitting in bed just staring at a picture on the wall keeping still. That woozy feeling has been back the last couple weeks of this wave but not as extreme. It will get better. Just from my own experience, reinstatement helped me. I held out as long as possible, but it was risky. Thankfully it helped though not perfectly. 

[LostInCanada]

Took Vitamin e 400iu on Thursday and Friday. Think I am reacting to it. Major nausea, dizziness and chills. Then I read 

Vitamin E may increase the production of CYP3A4 in the liver, and this could lead to an increase in drug metabolism, potentially lowering the efficacy of therapeutic drugs.

https://pubmed.ncbi.nlm.nih.gov › ...

Vitamin E supplementation and hepatic drug metabolism in humans  Not a good day.

 

 

[AmitV]

2 hours ago, LostInCanada said:

Took Vitamin e 400iu on Thursday and Friday. Think I am reacting to it. Major nausea, dizziness and chills. Then I read 

Vitamin E may increase the production of CYP3A4 in the liver, and this could lead to an increase in drug metabolism, potentially lowering the efficacy of therapeutic drugs.

https://pubmed.ncbi.nlm.nih.gov › ...

Vitamin E supplementation and hepatic drug metabolism in humans  Not a good day.

 

 

 

Oh dear! How have you been doing overall?

 

I have experienced reduced hours of brain fog (blank/numb) feeling during the day in the past few days. In the past, I would have complete days of it. Now I get it a few hours here and there every day. I immediately speak quicker, communicate better, and can think faster. The brain fog makes vertigo even worse because the brain is trying to adapt to inner ear impairment as well as trying to run its memory functions at the same time. Once it clears up, I see a noticeable improvement in my vertigo.

 

I have now begun vestibular rehab therapy exercises every day. I'm told I shouldn't expect any major improvements until the 4-week mark but should begin to see small improvements every few days. I have to identify and repeat the exercises that specifically cause me more dizziness or provoke my symptoms, which is how the brain adapts and slowly transfers the impaired function to the other vestibular organs which ultimately leads to adaptation and recovery. 

 

I strongly believe I had an existing impairment that caused vertigo when I took the SSRI, as SSRI messed up adapted brain functions. So reinstatement for me will be an absolute blunder. 

 

Existing Impairment: Sometimes impairments can be gradual and progressive, as such they are never noticeable as the brain keeps adapting alongside the progression of the impairment. This is why reinstatement often works for folks who may have suffered an impairment during their course of SSRI usage on a stable dosage. When they begin coming off is when things go sideways! Precisely why the brass monkey scale suggested by moderators works extremely well as it gives the brain enough time to gradually adapt to impairments.

[LostInCanada]

It's a bad day plus heart palpitations. Trying not to feel hopeless so went for a walk but that only made things worse. Things will get better. Minute by minute at the moment. Thanks for the update.

[AmitV]

2 minutes ago, LostInCanada said:

It's a bad day plus heart palpitations. Trying not to feel hopeless so went for a walk but that only made things worse. Things will get better. Minute by minute at the moment. Thanks for the update.

I’ve had incredibly good luck with L-Theanine supplement 125mg 4 times a day. It really tamps down on my anxiety and makes all these things like heart palpitations much more bearable and ignorable. I started slow with 125mg per day to see how it went and so far zero complaints only pluses for me.

 

Half of these withdrawal effects are magnified significantly because the anxiety crutch (SSRI) you had for all those years is now gone. If you can find a simple method to tackle anxiety like L-Theanine and skullcap tea you may be able to get through this much easier. 
 

I was worried about both if they would slow down the withdrawal timeline for me, so far things have been progressing well. Until 2 weeks ago I couldn’t even bear the thought of lifting my head up even an inch. Now I can look up at the sky all the way or a tall building.

 

 

[LostInCanada]

L-theanine is very bad for me. It's too much of a risk to mess around with supplements at this point for me. The nausea part of withdrawal gets me down but I am managing. Thanks. It just seems that the vit e caused an issue.

[AmitV]

4 minutes ago, LostInCanada said:

L-theanine is very bad for me. It's too much of a risk to mess around with supplements at this point for me. The nausea part of withdrawal gets me down but I am managing. Thanks. It just seems that the vit e caused an issue.

Ginger tea! Specifically freshly cut ginger is the best for nausea.

[LostInCanada]

Yes, thanks, I do this along with organic ginger chewable tablets. And doing nothing, no movement is good too. 

[AmitV]

On 4/10/2023 at 5:42 PM, LostInCanada said:

Yes, thanks, I do this along with organic ginger chewable tablets. And doing nothing, no movement is good too. 

I do want to say something. While reinstatement may certainly help. I wouldn’t wait for things to get better on their own unless you’ve started to see improvements week over week.

 

I would highly recommend a computerized neurovestibular assessment. I did one at Alberta balance Center. It was $600 cad out of pocket. Extended health insurance reimbursed me 50%. That’s where they caught the actual impairment and gave me exercises for adaptation. Only since doing those exercises have I seen improvements. 3 weeks ago my head was in a cervical collar to avoid vertigo. Today I can look behind me and turn around. No it’s not perfect all, but my wife pointed out I’m immensely better than 3 weeks ago. Again you don’t have to take medications.

 

Secondly a comprehensive eye exam, my eye doctor did a thorough exam today and told me I have vertical misalignment between both eyes which didn’t exist before I took SSRI, which is why my eyes are tired, I blink too much and vertical misalignment also causes dizziness and vertigo. He will apply fresnel prism lens stickers on my glasses on Friday, so I can try those out for a few days to see if I experience a difference. I always wondered why my issues were worse during the day and less intense in low light. He said vertical misalignment has all the symptoms of vertigo including nausea and it’s not a slow progressive condition, this condition comes on immediately.
 

Just wanted to leave that with you. While all of these issues were initiated by SSRI withdrawal and dosage changes, there may be ways to identify these issues and begin managing these symptoms to become functional again without drugs. God knows how long these things will take to resolve on their own. 

[LostInCanada]

Thanks. I am in a wave is all I can think because they had went away and now are back. 

[AmitV]

9 minutes ago, LostInCanada said:

Thanks. I am in a wave is all I can think because they had went away and now are back. 

That would make sense of the symptoms went away.

[LostInCanada]

So just putting it out there....has anyone reacted badly to decaf tea? I ordered some organic clipper decaf and also found some Celestial seasonings decaf chai tea. I am feeling hesitant for fear of an issue. Any thoughts @Sebas @Hanna72 @Fifree @StayHopeful anyone?

[Fifree]

Hi @LostInCanada  I have been drinking rooibos tea as a substitute for my old favourite black tea. It’s naturally caffeine free and I haven’t had any problems with that so far.  I didn’t like it as much at first, but it’s grown on me now. I don’t know how the decaf teas will go. I haven’t had any dramas with decaf coffee tho.  Hopefully everything goes smoothly for you. 

Let us know how you get on. Good luck with it

[RachelSusan]

@LostInCanadaWhat a great question.  I have always had a problem with caffeine, even before withdrawal.  Withdrawal has made it even worse. I have not had a problem with decaffeinated tea.  Decaffeinated coffee however is still a problem.

 

I am sorry you are in a wave.  It can feel like a real set-back. I know when I get a window I think oh good I am recovered, finally.  Then a wave hits and I wonder how long is this going to go on? I hope you pull out of it soon.

[StayHopeful]

HI @LostInCanada

 

Caffeine really started bothering me during my tapering. When on meds, I was an all-day coffee, Mtn Dew and energy drink person, due to the fatigue they caused. I had to cut out all caffeine and stimulating ingredients when withdrawal set in. I did accidentally have a little caffeine the other day, didn't notice a difference but won't chance it again. I haven't had any reactions to decaf coffee or herbal teas. 

 

I've tried all of the Celestial herbal tea varieties, and really like them (many years ago I got a tour of the factory while passing through Colorado once), I also like Twinnings brand as well.

 

I found a little loose, leaf herbal tea shop where I live. They sell their teas in packs of 1 -3 oz. sizes. The shop keeps there are very helpful and give herb info - what their benefit is, med interactions, etc. If you can find one of those where you live, that might be a good alternative and give you a wider variety of choices. 

 

I hope your wave starts to ease soon. I know sometimes it's much easier said than done but remember that you'll get through this, it's only temporary, and distract yourself as much as possible. 🙏

 

Best wishes, SH