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Cheeky: on Paxil for 23 years needing advice

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Cheeky

Any Body ?

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GiantsWSC

Cheeky,

 

I thought the same when I was going through my taper although my taper started at a lower dose of 10mg.  Originally I was given 20 mg, I believe almost 20 years ago and after a few weeks the doc told me to cut down to 10mg. I don't even remember how I went from 20 to 10mg in such a short time without significant symptoms but most likely due to the short amount of time I was on it. Trying to cut from 10mg to zero the quick way was how I found out how difficult it was so I reinstated. I stayed on that 10mg dose from around 1998 or 1999 up until 2013 when I found the now defunct Paxil Progress which I learned how to do a slow taper. 

 

Throughout the taper I felt the same way you did. I thought to myself why not just take this for the rest of my life and just live with it. I'd feel more normal and wouldn't have to deal with the roller coaster of waves. I basically told myself I didn't want a drug to govern my life and was set on getting off it. The waves will always vary, some last much longer and some much shorter at least that's how they were for me. I believe the lower you get the waves will be better and better. That's what I've seen from others who are coming down from higher doses. 

 

Also, I wouldn't set a date/time when you want to get off the drugs as I think it will give you more stress and anxiety. I would just go with what your body is telling you, if you feel better after a drop you can take the next step down and if you don't keep holding until a window appears. 

 

Are you doing anything to help you along the way? For example, trying some mild exercising or reading to distract your mind? You know exercise helps with the release of serotonin. I took fish oil and magnesium during the taper, I'm not sure if it helped but it definitely didn't hurt. Listening to my favorite music also helped me but make sure to steer away from the sad songs =).

 

You must also have the Will and Drive to get better and know that you will. This is important when those times you aren't feeling so good, depressed, confused etc. Think of something in your life that brings joy, think about something you love doing when you're feeling good. Hold onto that thought and when you're down, keep telling yourself that once you get well you're going to go out and do the things you love.

 

Hope this helps Cheeky. Keep your head up. Things will get better.

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Songbird

Hi Cheeky, the thing that keeps me going is that I know these drugs poop out eventually, plus if I taper slowly enough it's bearable and I can still live my life fairly normally.  I've given up thinking about the total time it will take, because every time I have been disappointed that it's going to take a lot longer than I had hoped.  These days I figure if my dose is going downwards, that's the right direction, so I consider that success. I've also found that some dose ranges are harder than others, so if you are in a difficult range, it doesn't necessarily mean it will be that hard all the way down.  I've also found that some things get better as dose decreases - side effects such as emotional blunting ease off at lower doses.  There are definitely other "turtle" taperers here at SA, so you're not alone.  Slow and steady wins the race, just like the turtle in the story.

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grandmaD
7 hours ago, Cheeky said:

okay so here is my update.

I have slowly  went down 1 mg in a 6 week period and I have to say its been  better to do that then just drop the 1mg in one go but unfortunately now after the 6 weeks I'm feeling the withdrawal , aniexty in waves , emotional, dizzi spells, slight confusion and negative thoughts. I just wonder how I'm going to manage this for the next 10 years.  I often think is it better to not taper at all and stay on Paxil the rest of my life and only taper the Seraquel. I'm at a loss of what to do, or mayday I'm thinking like that because I'm in a wave.

I'm 41 years and would love to be free of these drugs by 50, I really don't know if that is possible. my aim at the moment is to get to 30mg which is 1tablet and a half then start the Seraquel tapper. after I finally stabilised from my last drop I felt great and if I know that after every drop I'm going to feel good then I will continue on, I'm just scared that when in a waves I won't recover.

Any thoughts would be welcomed.

thanks

I'm sorry for your suffering and I know how it can be so relentless and cause despondency.  I don't have much to say that can help, unfortunately but just a few things I can think of for now;

1. I did what you did - a slide over 4 weeks and then held for the next 4 weeks and it was HORRENDOUS, with all symptoms ramping up sky high, very intense, so I figured just one change in the 8 week period was better than 4 (even if they were gradual).  This was a .2 drop by the way - so, so tiny!!!

2.  I've noticed that you can be coping for several weeks and that it seems to be "cumulative" and builds up without you knowing and suddenly it hits you like a tsunami!  At this point I found there is nothing you can do but hold and ride it out as best you can until you stabilise and try and realise your brain is doing its best to regain its eqilibrium.

3. Like you, I keep dwelling in fear of how long it is taking and how much longer its gong to take.  I understand this is not helpful and is best to try and avoid it if possible and take one day at a time!  I wanted to be off in 3 years and then totally believed I could do it in 4 years, and then convinced year 5 I would be totally off.  Instead, I went downhill very bad in that year and eventually discovered I had been switched unknowingly to a generic brand, causing me even more anger and depression!  It makes you feel quite trapped, I understand that too when you think you would like to be off it by a certain age - I was hoping to be off before I was 60 and now I am 64.  I feel like I will never get off, like you. I feel like the drug is in control because there is nothing I can do to make it go faster or better. 

4.  I get scared too and have only just realised I also go into panic mode when things go downhill so bad and I cannot cope.  I have found a book called "The Dare Response" to be very helpful with anxiety, fear and panic.  It is by Barry McDonagh.  I will try and attach it if I can...

5. Some tapers are worse than others

 

https://dareresponse.com/

 

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Cheeky
3 hours ago, GiantsWSC said:

Cheeky,

 

I thought the same when I was going through my taper although my taper started at a lower dose of 10mg.  Originally I was given 20 mg, I believe almost 20 years ago and after a few weeks the doc told me to cut down to 10mg. I don't even remember how I went from 20 to 10mg in such a short time without significant symptoms but most likely due to the short amount of time I was on it. Trying to cut from 10mg to zero the quick way was how I found out how difficult it was so I reinstated. I stayed on that 10mg dose from around 1998 or 1999 up until 2013 when I found the now defunct Paxil Progress which I learned how to do a slow taper. 

 

Throughout the taper I felt the same way you did. I thought to myself why not just take this for the rest of my life and just live with it. I'd feel more normal and wouldn't have to deal with the roller coaster of waves. I basically told myself I didn't want a drug to govern my life and was set on getting off it. The waves will always vary, some last much longer and some much shorter at least that's how they were for me. I believe the lower you get the waves will be better and better. That's what I've seen from others who are coming down from higher doses. 

 

Also, I wouldn't set a date/time when you want to get off the drugs as I think it will give you more stress and anxiety. I would just go with what your body is telling you, if you feel better after a drop you can take the next step down and if you don't keep holding until a window appears. 

 

Are you doing anything to help you along the way? For example, trying some mild exercising or reading to distract your mind? You know exercise helps with the release of serotonin. I took fish oil and magnesium during the taper, I'm not sure if it helped but it definitely didn't hurt. Listening to my favorite music also helped me but make sure to steer away from the sad songs =).

 

You must also have the Will and Drive to get better and know that you will. This is important when those times you aren't feeling so good, depressed, confused etc. Think of something in your life that brings joy, think about something you love doing when you're feeling good. Hold onto that thought and when you're down, keep telling yourself that once you get well you're going to go out and do the things you love.

 

Hope this helps Cheeky. Keep your head up. Things will get better.

Thanks for your wise words it always makes me feel better. I don’t know how to Thankyou enough xx

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Cheeky
1 hour ago, grandmaD said:

I'm sorry for your suffering and I know how it can be so relentless and cause despondency.  I don't have much to say that can help, unfortunately but just a few things I can think of for now;

1. I did what you did - a slide over 4 weeks and then held for the next 4 weeks and it was HORRENDOUS, with all symptoms ramping up sky high, very intense, so I figured just one change in the 8 week period was better than 4 (even if they were gradual).  This was a .2 drop by the way - so, so tiny!!!

2.  I've noticed that you can be coping for several weeks and that it seems to be "cumulative" and builds up without you knowing and suddenly it hits you like a tsunami!  At this point I found there is nothing you can do but hold and ride it out as best you can until you stabilise and try and realise your brain is doing its best to regain its eqilibrium.

3. Like you, I keep dwelling in fear of how long it is taking and how much longer its gong to take.  I understand this is not helpful and is best to try and avoid it if possible and take one day at a time!  I wanted to be off in 3 years and then totally believed I could do it in 4 years, and then convinced year 5 I would be totally off.  Instead, I went downhill very bad in that year and eventually discovered I had been switched unknowingly to a generic brand, causing me even more anger and depression!  It makes you feel quite trapped, I understand that too when you think you would like to be off it by a certain age - I was hoping to be off before I was 60 and now I am 64.  I feel like I will never get off, like you. I feel like the drug is in control because there is nothing I can do to make it go faster or better. 

4.  I get scared too and have only just realised I also go into panic mode when things go downhill so bad and I cannot cope.  I have found a book called "The Dare Response" to be very helpful with anxiety, fear and panic.  It is by Barry McDonagh.  I will try and attach it if I can...

5. Some tapers are worse than others

 

https://dareresponse.com/

 

GrandmaD

I think I might look into that website, as when the wave hits I panic and the the worry happens and it’s a downhill spiral.,

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Cheeky
1 hour ago, Songbird said:

Hi Cheeky, the thing that keeps me going is that I know these drugs poop out eventually, plus if I taper slowly enough it's bearable and I can still live my life fairly normally.  I've given up thinking about the total time it will take, because every time I have been disappointed that it's going to take a lot longer than I had hoped.  These days I figure if my dose is going downwards, that's the right direction, so I consider that success. I've also found that some dose ranges are harder than others, so if you are in a difficult range, it doesn't necessarily mean it will be that hard all the way down.  I've also found that some things get better as dose decreases - side effects such as emotional blunting ease off at lower doses.  There are definitely other "turtle" taperers here at SA, so you're not alone.  Slow and steady wins the race, just like the turtle in the story.

Thankyou for replying, gee it helps so much. As long as I go in the right direction, then I’m okay with that.

hugs to you 

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Rosetta

A big hug, Cheeky.  I worry about all the same things, of course.  Keeping busy is the best thing for me.  If I have time to think while I'm in a wave it's a much more anxious experience.  Sometimes I'm a bit stuck at home by the anxiety, but if I can get out the distraction helps.  At the moment it may be cold comfort, but it's good that for six weeks you were doing fine.  I hope this current feeling settles out soon!  - R

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Cheeky
13 hours ago, Rosetta said:

A big hug, Cheeky.  I worry about all the same things, of course.  Keeping busy is the best thing for me.  If I have time to think while I'm in a wave it's a much more anxious experience.  Sometimes I'm a bit stuck at home by the anxiety, but if I can get out the distraction helps.  At the moment it may be cold comfort, but it's good that for six weeks you were doing fine.  I hope this current feeling settles out soon!  - R

Thanks Rosetta,

i think your one amazing women to have given up these drugs and your strength amazes me. The only way for you is up and your getting there. I just have to fight this and I will. My beautiful boys need there mum and apart from this withdrawal I have a great life and I’m 

happy. These pills destroyes life’s and I’m sure if we knew this would happen, we would never off had touched the stuff. 

We were  vulnerable  coming on this drug and more vulnerable coming off. 

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Rosetta

Yes, Cheeky.  We will climb out.  Hugs. - R

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Cheeky

Hey everyone.

Just want to give an update of my symptoms.

The last couple of days I’ve had a feeling in my head that it’s getting stuffed so much it feels like it wants to explode. The other night I was laying down with my eyes closed and it felt like my head was spinning and it made me feel very dizzy that brought on nauseous. I also that night perspired to the extent of being wet and wetting my sheets, I was getting cold flushes so I got up and had a shower to get warm as I felt freezing 

Today ive had the head pressure and when I move my head around it gets worse, this is accompanied by sharp head pains.

Im a little teary today as I can’t stop thinking how this little pill can destroy life’s.

My question is is this a normal withdrawal symptom ?

 

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dreamspirit

It sure is, I’ve had that too. It makes you think you have a sinus infection or something.

 

plus headaches along with it. 

 

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brassmonkey

I found the night sweats to be so totally gross.  Wake up soaking wet, wash, change and then do it again.  For me they came in waves so it would happen for a week or so and then I'd get a break for a while. 

 

Sometimes, when I when to bed it would feel like the bed was spinning and rocking.  It couldn't because it's directly on a concrete slab and earthquakes feel totally different.  So I would use the sensation as part of a meditation about flying through the universe, watching the stars and enjoying the beauty of the distant galaxies. No words, no thinking, just letting the visuals happen and guiding them if necessary. I always ended up sound asleep very quickly that way.

 

Head aches, head pressure and brain fog are all very common symptoms that have to be lived around as best as possible.  They are all signs of the healing that is taking place in the brain and, although uncomfortable, are a positive sign.

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Cheeky
9 hours ago, brassmonkey said:

I found the night sweats to be so totally gross.  Wake up soaking wet, wash, change and then do it again.  For me they came in waves so it would happen for a week or so and then I'd get a break for a while. 

 

Sometimes, when I when to bed it would feel like the bed was spinning and rocking.  It couldn't because it's directly on a concrete slab and earthquakes feel totally different.  So I would use the sensation as part of a meditation about flying through the universe, watching the stars and enjoying the beauty of the distant galaxies. No words, no thinking, just letting the visuals happen and guiding them if necessary. I always ended up sound asleep very quickly that way.

 

Head aches, head pressure and brain fog are all very common symptoms that have to be lived around as best as possible.  They are all signs of the healing that is taking place in the brain and, although uncomfortable, are a positive sign.

Thanks Tom ❤️

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Cheeky
14 hours ago, dreamspirit said:

It sure is, I’ve had that too. It makes you think you have a sinus infection or something.

 

plus headaches along with it. 

 

Yep feeling like I’ve come down with the flu. Crazy

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grandmaD
On 6/24/2018 at 1:58 PM, Cheeky said:

Hey everyone.

Just want to give an update of my symptoms.

The last couple of days I’ve had a feeling in my head that it’s getting stuffed so much it feels like it wants to explode. The other night I was laying down with my eyes closed and it felt like my head was spinning and it made me feel very dizzy that brought on nauseous. I also that night perspired to the extent of being wet and wetting my sheets, I was getting cold flushes so I got up and had a shower to get warm as I felt freezing 

Today ive had the head pressure and when I move my head around it gets worse, this is accompanied by sharp head pains.

Im a little teary today as I can’t stop thinking how this little pill can destroy life’s.

My question is is this a normal withdrawal symptom ?

 

Hi Cheeky, so sorry to hear you are getting these symptoms, it really is hard to bear.    I get dizzy but not like you describe in bed, as when I lie down I feel better.  I get hot flushes but not very often perspiring and getting wet.  I get so cold, especially in winter that it gets into my bones and I need a long warm bath.  Beware of HOT BATHS.  I was having hot baths with epsom salts and ended up with high anxiety and insomnia that night.  I blamed the epsom salts, but it was the HOT water.

 

I've had the head head pressure all through these years just about every day.  It is finally starting to let up this year.  I also get sharp shooting pain in my head.

 

I finally started to get teary this year, just a few teardrops usually when watching a sad movie or have been very  hurt.

 

It is beyond comprehension how this little pill can devestate a person's life, you are right there.

 

What sort of % taper are you doing and how often?  HOw has it been up till now?

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Cheeky
35 minutes ago, grandmaD said:

Hi Cheeky, so sorry to hear you are getting these symptoms, it really is hard to bear.    I get dizzy but not like you describe in bed, as when I lie down I feel better.  I get hot flushes but not very often perspiring and getting wet.  I get so cold, especially in winter that it gets into my bones and I need a long warm bath.  Beware of HOT BATHS.  I was having hot baths with epsom salts and ended up with high anxiety and insomnia that night.  I blamed the epsom salts, but it was the HOT water.

 

I've had the head head pressure all through these years just about every day.  It is finally starting to let up this year.  I also get sharp shooting pain in my head.

 

I finally started to get teary this year, just a few teardrops usually when watching a sad movie or have been very  hurt.

 

It is beyond comprehension how this little pill can devestate a person's life, you are right there.

 

What sort of % taper are you doing and how often?  HOw has it been up till now?

Im tapering by  1mg at a time and holding until I feel better . I found the  10% 5% 2.5% to hard on me so I'm just reading my body. the last taper I did .5mg for two weeks then another .5mg the next 3 weeks and here I am now. I really believe that three years ago going cold turkey and trying  other drugs caused havoc to my nervous system and now I'm so sensitive.

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Rosetta

Hi Cheeky.  I hope you have found the solution to make your taper easier.  Take care, R

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Cheeky

Needing a little advice today.

I'm currently at work today and I feel awful, I've been having these strong hot and cold flushes , I'm still dizzy and disoriented. My glands behind my ears are swallow and I feel like i have a flu without any throat or noise problems. my arms are also getting tingly sensations and I'm pretty much struggling. Is this normal I'm starting to panic.

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Cheeky
8 hours ago, Rosetta said:

Hi Cheeky.  I hope you have found the solution to make your taper easier.  Take care, R

I just don't know what I'm doing .

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Cheeky

another thing is I'm getting  wave of nauseousness.

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grandmaD
16 hours ago, Cheeky said:

Im tapering by  1mg at a time and holding until I feel better . I found the  10% 5% 2.5% to hard on me so I'm just reading my body. the last taper I did .5mg for two weeks then another .5mg the next 3 weeks and here I am now. I really believe that three years ago going cold turkey and trying  other drugs caused havoc to my nervous system and now I'm so sensitive.

Yes, you are probably right.  That was my problem also.  I up-dosed and down-dosed for years, skipped doses and then I was switched to 3 different A/D's and did a CT.  I don't think my body/brain ever stabilised from the word go.  I also did 10% taper then 5% and then 2.5% but then realised how long it would take me to get off and went back to a 5% taper which was hell and then had to do a 6 month hold each year for 3 years in a row....then Paxil is hardest one to get off ... and on it goes!  I guess the best thing you can do is what you are doing and just see how you go week by week, holding for longer weeks if necessary.  It is like being caught between a rock and a hard place, no easy answers, in fact there are NO ANSWERS!  I hope you can find some relief and ways to cope.

 

I noticed you put on generic.  Were you told?  Did you notice any difference?  I was not told and I went downhill for 12-18months afterwards but didn't realise why until I found out.  It must be 2 years ago now (2016) and I think I am still stabilising from that.  What are its ingredients, the generic you are on and who makes it???

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Songbird

Is it possible you have a viral infection?

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Cheeky

mayby I do and its combined with being in a wave. I really dont know.

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Cheeky
40 minutes ago, grandmaD said:

Yes, you are probably right.  That was my problem also.  I up-dosed and down-dosed for years, skipped doses and then I was switched to 3 different A/D's and did a CT.  I don't think my body/brain ever stabilised from the word go.  I also did 10% taper then 5% and then 2.5% but then realised how long it would take me to get off and went back to a 5% taper which was hell and then had to do a 6 month hold each year for 3 years in a row....then Paxil is hardest one to get off ... and on it goes!  I guess the best thing you can do is what you are doing and just see how you go week by week, holding for longer weeks if necessary.  It is like being caught between a rock and a hard place, no easy answers, in fact there are NO ANSWERS!  I hope you can find some relief and ways to cope.

 

I noticed you put on generic.  Were you told?  Did you notice any difference?  I was not told and I went downhill for 12-18months afterwards but didn't realise why until I found out.  It must be 2 years ago now (2016) and I think I am still stabilising from that.  What are its ingredients, the generic you are on and who makes it???

OMG that was also a problem with me too, I couldn't believe that a change in brand could make such a big difference but there's no way i will be changing in back 

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Songbird

Any kind of infection, along with its own symptoms, can make withdrawal symptoms flare up worse.

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Cheeky

Okay I went to doctor with my son as we both have a viral infection, that’s why I have a rash and have been feeling awful. I think that has made my wave worse.

i’m going away this Sunday for  ten days , so I hope I”m going to feel better by then. 

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grandmaD

How wonderful to find a REASON!!!  Thanks too to Songbird!!

 

 

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Carmie
On 6/27/2018 at 11:42 AM, Cheeky said:

Okay I went to doctor with my son as we both have a viral infection, that’s why I have a rash and have been feeling awful. I think that has made my wave worse.

i’m going away this Sunday for  ten days , so I hope I”m going to feel better by then. 

 

Hi Cheeky, 

 

That’s good you found out why you were feeling worse. Things we do, things we take, every additional illness, too much exertion, stress, too much negatively around us etc etc can affect the intensity of the withdrawals. 

 

We really are so sensitive in this withdrawal process. 

 

Hope you have a nice holiday 💚

 

 

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Cheeky

Hey everyone,

Just an update of whats going on.

I got very sick three weeks ago with the flu and slap face, which is a virus and was bed bound for a week,  really thought my body was breaking down , never been sick like that before. The doctor did some tests on me and  the results came back today and I  have a underactive thyroid and low in iron. The doctor wants to put me on medication but I'm a little bit worried its going to effect my tapering. I have just done another drop by 0.2mg and not sure if that a good thing to do. Not sure at the moment.

I really hope to get this fixed as I'm so tired all the time and can barely keep my eyes open. I want to get to 30mg paxil then start the Seraquel taper, hopefully i will have more energy after that.

Has any body have recommendations as of what I should do with my situation ?

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GiantsWSC

Hi Cheeky,

 

Sorry you got sick, I guess it's better to know it was something else rather than more side effects of paxil. I did a little research and found this site from Dr. Axe 

 

https://draxe.com/hypothyroidism-diet-natural-treatment/

 

If you scroll about half way down the page you'll see a diet plan for those with an under active thyroid or hypothyroidism. Would it be possible to try some of these more natural remedies and see how things go? I'm no doctor by any means but I figure it might be worth a shot. I mean, I was able to finally get off of paxil not with the help of any doctor but the people on this site. I always feel doctors take the easy way out but I guess they're so busy with so many patients that its the only thing they can do.

 

As for your iron situation, I had low iron in my younger days and the doctor just told me to take iron supplements. Knowing what I know now, I'd probably try real, whole foods that contain iron rather than some processed tablet. That's just my take on it. But regardless, taking an iron supplement probably won't hurt though and may help your situation.

 

Hope this helps

 

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Cheeky
23 hours ago, GiantsWSC said:

Hi Cheeky,

 

Sorry you got sick, I guess it's better to know it was something else rather than more side effects of paxil. I did a little research and found this site from Dr. Axe 

 

https://draxe.com/hypothyroidism-diet-natural-treatment/

 

If you scroll about half way down the page you'll see a diet plan for those with an under active thyroid or hypothyroidism. Would it be possible to try some of these more natural remedies and see how things go? I'm no doctor by any means but I figure it might be worth a shot. I mean, I was able to finally get off of paxil not with the help of any doctor but the people on this site. I always feel doctors take the easy way out but I guess they're so busy with so many patients that its the only thing they can do.

 

As for your iron situation, I had low iron in my younger days and the doctor just told me to take iron supplements. Knowing what I know now, I'd probably try real, whole foods that contain iron rather than some processed tablet. That's just my take on it. But regardless, taking an iron supplement probably won't hurt though and may help your situation.

 

Hope this helps

 

Thanks for your advice @GiantsWSC a very good website. I have decided to start a Keto diet and go back to exercising  then will see how I go in a couple of months. I just hope this drop is going to be okay.

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Rosetta

Cheeky, I have no idea what to do about hypothyroidism, but I wanted to be supportive.  I do think that trying food based approach first us a good idea.  This is so that you can avoid any reactions to the medications that a doctor might prescribe.  I'm so sorry this is happening.  It might resolve itself in time.  So many of our illnesses are WD related even when medical tests show a specific malfunction.  I hope you feel better soon! - Rosetta

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Cheeky
On 7/15/2018 at 2:01 AM, Rosetta said:

Cheeky, I have no idea what to do about hypothyroidism, but I wanted to be supportive.  I do think that trying food based approach first us a good idea.  This is so that you can avoid any reactions to the medications that a doctor might prescribe.  I'm so sorry this is happening.  It might resolve itself in time.  So many of our illnesses are WD related even when medical tests show a specific malfunction.  I hope you feel better soon! - Rosetta

Thanks Rosetta. I”m feeling much better since I’ve been away for 10 days , when I got those tests done I was  really sick with a bad flu as well as a virus, so I”m hoping with my new lifestyle keto change  diet, I will be able to get my thyroid better and will see if it makes any difference to withdrawals.

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Rosetta

Great!! I'm glad you are feeling better.  I just caught a cold myself.  Oh, joy.  I hope your thyroid issue is easy to fix.  

Take care,  Rosetta

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dreamspirit

How you feeling, Cheeky? Have you done anymore drops or are you staying where your at for awhile?

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