Lovemykids1234: 15 years of Paxil

[Lovemykids1234]

I have a question. I too have been on Paxil for 15 yrs. I started hearing music in my mind referred to as auditory hallucinations. Is it possible to have withdrawal symptoms while still on the med if it poops out on you?

[JanCarol]

Hey Love - 

 

Did you know that most people hallucinate?  Hear voices, or misinterpret sounds as music or voices?

 

I have music in my head a lot too.  Sometimes my tinnitus joins up with the music, to make - modern music.  

 

Seriously, though, it's not the symptom which is alarming, but that you have been on this drug for 15 years.

 

They really are only tested for a matter of months, and in my experience, at about 5 years out, most people experience some form of poop out, which makes the doctors add more drugs or fiddle with doses - and these changes often throw people into greater distress, creating what is called a "prescription cascade."

 

Learn more here:

Intro to Antidepressant Withdrawal Syndrome

 

Healing from Antidepressants - Patterns of Recovery (by Toxic Antidepressants)

 

We have found that many people have great improvement of symptoms when they taper down slowly from their doses.

 

Are you on any other drugs?  This includes statins and stomach acid drugs.  Please put your drugs into your signature, including dates and dosages, and changes in dosages, especially for the last year or two.

 

Please Put Your WIthdrawal History Into your Signature

 

Welcome to SA!  I hope you see the sun today.

[longing]

Lovemykids,  I know exactly the kind of auditory hallucinations you are having.  I had them for awhile myself.  At first i kept thinking the radio was on at a low volume until my husband reminded me the alarm clock at our beside didn't have a radio.....feeling stupid then......Most of the time I could ignore it execept during quiet time like trying to fall asleep.  I found that some white noise did help.  

 

What I would be concerned about is the fact that you have been on Paxil for 15 years.  I was on it for more than 22 years.  Over the last several years I started having symptoms that no one could explain until recently.  I discovered that I was having negative reactions to the Paxil I had been taking for years with no side effects.  Suddenly my body was telling me that it could no longer handle the med.  I had several other symptoms, short term memory lost, confusion, very reactive reflexes, mild tremor in my hands, on and off flu like achiness, and others I can't even remember.  Among these symptoms was auditory hallucinations, or hearing music that wasn't really there.  After I found out my symptoms were a result of my Paxil use I slowly tapered off.  At first the music got worse but slowly it got better and I no longer hear it.

 

Since this is a new symptom and you have been taking Paxil for an extended period I would watch for other symptoms that might indicate that it is time for you to get off Paxil.  I know that can be a scary thought but if your body is starting to react to Paxil it can get much worse.  Be sure to check any recently added med, and I mean anything, for any interaction with Paxil.  I just recently found out that if you are taking Paxil it is not a good idea to take Imitrex(migraine relief)  the two combined can increase your chance to develop serotonin syndrome.  This syndrome can crop up after long use of Paxil.  It is this syndrome that ultimately caused me to withdraw from Paxil. 

 

I don't want to scare you with this post but I didn't know any of this and found out almost too late.  Pay attention to your body and listen to it.  If you are experiencing any of the other symptoms you read about on this forum then consider that you may need to get off the Paxil.  I hope this helps.  -longing

[longing]

Lovemykids:  to more directly answer your initial question:  Can you have withdrawal symptoms if the Paxil has pooped out.  My previous post was trying to say that I don't think the Paxil has pooped out on you but that your new auditory symptom could be an early indication that your body has started to react negatively to the Paxil.  -longing

[Lovemykids1234]

Okay in addition to the auditory hallucinations, I have repetitive thoughts that constantly play over and over on my mind. I also feel the need to click my tongue, I hear a hissing song in my mind. After doing some research, I think my Serotonin receptors may have become downregulated causing these symptoms? Any feedback on this? If I stay on a low dose of Paxil is it possible for them to become upregulated? I saw two Psychiatrists who both were completely useless in helping me. One who told me I needed to be "educated". I just want these symptoms to go away so I can get my life back. No doubt being on Paxil so long has created this misery. I just want my life back. I dont care what it takes.

[snostorm]

Greetings

 

Im on Paxil 15 years and began my taper over last summer.  I went too fast and suffered greatly and still am.  Educate yourself and be diligent. This site is an amazing resource and the help that is provided by its contributors is wonderful.  You will likely come to the conclusion that you want to be off Paxil.  GO SLOW and most doctors are of no help.  A slow methodical taper is the only way. 

 

best regards

[KarenB]

Hello LMK,

 

What dose of Paxil are you currently on, and have you made any changes recently? 

 

It sounds as if your brain and body are becoming increasingly unhappy with having to deal with this drug.  It is the appearance of side-effects that prompts many people to question if they should continue to use an antidepressant.  As long as tapering is done slowly and safely, then people usually start to feel more 'like themselves' and the side-effects begin to lessen.

 

We suggest a gentle taper, reducing by no more than 10% of your current dose each month.  This allows your brain time to adjust as you go, and lessens any withdrawal.  You are actually in a very fortunate position of being able to read up before you make decisions.  You'll avoid a lot of pain and hassle this way. 

 

If you do decide to begin tapering, you might like to try Fish oil and Magnesium.  Many people find them useful during w/d.   

Non-Drug Techniques to cope with emotional symptoms is full of ideas for taking care of yourself as you adjust to lower doses.

You could also skim through the Symptom Checklist and see what else you might be experiencing.   

 

Please put your withdrawal history in your signature – all drugs/dates/dosages etc - so we can see your situation easily whenever you post, and help you more accurately.  Thanks.

 

Karen

[Lovemykids1234]

Question: Once you realize your serotonin receptors have become downregulated by being on high doses over 15 yrs, do you have to taper off the meds completely before they will upregulate or can you still stay on a low dose and wait for them to upregulate before you taper?

[ChessieCat]

Hi LMK, and welcome to SA,

 

I moved your post to your Intro topic.  This way your questions, the responses and your history will be kept in one place.

 

As previously requested please create a drug signature Create Your Signature.  Please include details for the last 12-18 months of  all drugs, dates, doses and discontinuations & reinstatements.  If you can't remember dates, please write it as "early March" or "mid-August".  Please provide a summary of any drugs prior to that which can just be listed with start and stop years. Please include all prescription, non-prescription drugs and supplements you are currently taking. Phone Instructions:  Withdrawal History Signature. Please also remember to update it with date and dose whenever make a change so that it remains current. Thank you.

 

This might help you to understand the process which SA recommends, ie tapering by no more than 10% of the previous dose and holding for about 4 weeks to allow the brain to adapt to not getting as much of the drug:

 

Brain Remodelling

 

You might find these topics helpful:

 

Windows and Waves Pattern of Stabilization

 

Stabilising After a Reduction - What Does That Mean?



Withdrawal Normal Description

 

Why taper paper: dose-occupancy curves

 

Keep Notes on Paper
 

Rate Symptoms Daily to Check Patterns and Progress

 

Here is the link to Tips for tapering off Paxil (paroxetine)

 

I have found that as my dose got lower I began feeling like my old self, being able to laugh and enjoy things more than I have for many years.

 

This is your own Intro topic where you can ask questions and journal your progress.  Click "Follow" top right and you will be notified when someone responds.

[Lovemykids1234]

This is exactly what I needed to read. [ref: How psychiatric drugs remodel your brain in the Symptoms and self-care forum] I am seeing a functional medicine doctor who is trying to help me heal. She has me staying on a low dose of Paxil until my serotonin receptors upregulate. Then she will taper me off. Any thoughts on this? Altostrata can you weigh in?

Edited April 7, 2017 by scallywag
moved post and added link to original post location topic

[scallywag]

LMK1234, I've moved your post/question to your introduction topic so that all your information, questions and answers are in one place. Your introduction is the best place to ask questions about your situation.

 

You need to be careful with any medical professional -- traditional western medicine, functional medicine, integrative medicine, naturopathic medicine, traditional chinese medicine, etc. Most practitioners of every "school" are ignorant about the effect of these medications.  What many think of as tapering, we would probably consider as a running march to an endpoint of moderate to severe symptoms.

 

What is your func. doc suggesting as a taper?

 

Please post a medication history in a signature so that we can answer your questions.

 

Instructions on creating a signature.

Link to signature settings page.

[MollyN]

What many think of as tapering, we would probably consider as a running march to an endpoint of moderate to severe symptoms.

 

Amen to that!!!

 

I wonder how your going OP? I popped in to say that when on paxil - I had around about 2 monthly 'olfactory hallucinations' - I would swear someone was smoking a cigarette near me, no one else could smell a thing.

 

I'd get up and look around for someone smoking outside the window - even in my room with the doors and windows closed. For a long time I thought it was ghost!! Then one day I googled it and found -

 

"The phantom smell may seem to always be present or it may come and go. Phantosmia may occur after a head injury or upper respiratory infection. It can also be caused by temporal lobe seizures, inflamed sinuses, brain tumors and Parkinson's disease" which frankly was so scary that I decided I preferred the smoking spirit idea!!

 

Reading your post, I just realised that I haven't had an episode for ages - maybe it was the drug?!

[Lovemykids1234]

Are serotonin receptors able to upregulate while youre still taking a low dose of the meds?

 

Luvmykids1234

15 years on Paxil

Started having bizarre side effects.

Thinking serotonin receptors are downregulated after long term use. Want them to upregulate before tapering off.

[Lovemykids1234]

I have a question. After 15 yrs on Paxil, I started having some god awful side affects like hearing music in my mind that wouldnt go away, repetitive thoughts, constant ringing in my ears. My doctor that I see believes my serotonin receptors are downregulated. She says I can stay on a low dose of Paxil and they will upregulate on their own. And then she will taper me off. Im afraid she doesnt know what shes doing. Thoughts?

 

Luvmykids1234

15 yrs on 60 mg Paxil

Scared to death

Would really like my life back

[Lovemykids1234]

So will my receptors if they are indeed downregulated right now, come back if Im still on a low dose of Paxil? Or do I have to get off the meds completely for my brain to heal?

 

Luvmykids1234

15 years on 60 mg Paxil

Very scared

Would like my life back

[ChessieCat]

I've moved your posts to your own Intro topic.  This way all your information, questions and answers are in one place.

 

Your introduction is the best place to ask questions about your situation.

 

Tapering a drug allows the brain to adapt gradually to not getting as much of the drug.  In other words, the changes happen as you taper.

 

See:  Why taper by 10% of my dosage?

 

Also as previously requested please create a drug signature Create Your Signature.  Please include details for the last 12-18 months of  all drugs, dates, doses and discontinuations & reinstatements.  If you can't remember dates, please write it as "early March" or "mid-August".  Please provide a summary of any drugs prior to that which can just be listed with start and stop years. Please include all prescription, non-prescription drugs and supplements you are currently taking. Phone Instructions:  Withdrawal History Signature. Please also remember to update it with date and dose whenever make a change so that it remains current. Thank you.

[brassmonkey]

Hi Luvmykids-- Yes you receptors have been down regulated, that's how these drugs work.  The receptors are basically a drain to remove serotonin from your system.  Down regulating them by using an ssri closes them off so the serotonin stays in place and "makes you feel better".  Removing the ssri, the drain is allowed to open and the serotonin is allowed to leave your system.  However, this has to be done slowly and carefully to keep the system from breaking down and going into chaos because at the moment your system only understands how to work with the drug controlling it.  Over the course of a long slow taper your body has a chance to make the necessary changes to function with out the drug a little at a time in an orderly fashion.  As the amount of drug is decreased the receptors respond by correcting themselves as adjustments are made to every system in the body.  In the end the drug needs to be completely removed from the body to allow the body to full heal.  Your doctors thinking is wrong, the receptors do not up regulate and and then you taper.  You taper and your receptors respond by correcting themselves.

 

The symptoms that you are starting to experience are directly related to using the drug and are quite common.  As uncomfortable and annoying as they are, they are not dangerous.  I was in a similar position as you about six years ago and had all of them and more.  I was on a little lower dose 40mg and in severe "poopout" or tolerance, which it doesn't sound like you're experiencing yet.  Sixty mg is a huge dose of paxil and needs to be tapered carefully.  I do know half a dozen people who have successfully gotten off of that large a dose. In fact everyone I have know on 60mg has eventually gotten off of it safely.  What ever you do, DO NOT CT.  We have a huge amount of information on tapering here with access to thousands of hard fought cases and I personally just finished the taper that you're thinking of starting.  Please ask any questions you can think of to help you understand whats going on.

 

Brassmonkey

[Lovemykids1234]

Brassmonkey you just saved my life! You confirmed exactly what my gut was telling me. I could not wrap my brain around why she was keeping me on these meds. I cannot find a doctor anywhere around here that knows how to help a person in my situation at all. Thank you so much for responding and from now on Im going to get all my questions answered from here. I just weaned down to 5 milligrams on Paxil. I am going to stay right here for a while.When I decide to taper further I will come right here for advice.

 

Luvmykids1234

15 yrs on 60 mg Paxil 2001-April 2016

Started experiencing very weird side effects after 15 yrs. Auditory hallucinations, ringing in ears, clicking tongue, repetitive thinking.

Tapered to 20 mgs by December 2016

April 2016 down to 5 mg

Cant wait to get my life back!

[brassmonkey]

Please tell me you didn't go directly from 20mg to 5mg in one cut.

[Lovemykids1234]

Oh no way. I was down to 20 last December. And between then and now have tapered down to 5 mg.

[Happy2Heal]

Brassmonkey you just saved my life! You confirmed exactly what my gut was telling me. I could not wrap my brain around why she was keeping me on these meds. I cannot find a doctor anywhere around here that knows how to help a person in my situation at all. Thank you so much for responding and from now on Im going to get all my questions answered from here. I just weaned down to 5 milligrams on Paxil. I am going to stay right here for a while.When I decide to taper further I will come right here for advice.

 

Luvmykids1234

15 yrs on 60 mg Paxil 2001-April 2016

Started experiencing very weird side effects after 15 yrs. Auditory hallucinations, ringing in ears, clicking tongue, repetitive thinking.

Tapered to 20 mgs by December 2016

April 2016 down to 5 mg

Cant wait to get my life back!

 

 

hi LMK

your post is alarming, if I"m reading it right-

you tapered from 60mgs to just 20mgs by Dec 2016- How long was your taper?

 

you then write that you went down to 5mgs in April...?

 

that is way too fast!!

 

those of us who were in a hurry, as you seem to be, have had severe withdrawal symptoms for a LONG LONG time.

 

there is no way to get off these drugs quickly. it's just too dangerous. You MUST go slowly or you face a much longer period of awful symptoms that can greatly impact your life

 

I was stupid and went too fast, partly because I didn't know any better, partly because I was impatient to be off the drug

 

and I have been suffering greatly since last Sept. . I could have avoided this by going SLOWLY, tapering off a little bit at a time

[Lovemykids1234]

Oh no way. I was down to 20 last December. And between then and now have tapered down to 5 mg.

[Happy2Heal]

Oh no way. I was down to 20 last December. And between then and now have tapered down to 5 mg.

 

You've tapered from 20mgs to 5 mgs in just 4-5 mos?

[Lovemykids1234]

Yes I did. Im sure I did it way too quickly. I have suffered for over a year and a half now with god awful symptoms which I now know is a result of too much serotonin having accumulated in my synapses. Between two useless psychiatrists and a functional medicine doctor who has tried to tell me that if I stay on a low dose and just give it time I will feel better, I am at my wits end. I honestly do not know how I have kept it together this long. I know I need to slow down and from this point forward I will. As long as I know Im going in the right direction now.

[Altostrata]

Hello, Lovemykids.

 

Have these symptoms gotten better or worse since you've been reducing Paxil from 60mg? What kind of symptoms did you have at 20mg? Has your symptom pattern changed since you gone down to 5mg?

 

What is your daily symptom pattern now? How is your sleep? When do you take your drugs? Do you take anything other than Paxil?

 

Please keep daily notes on paper about your symptoms, when you take your drugs, and their dosages.

 

For the time being, if I were you, I would be very steady taking 5mg Paxil at the same time each day, let your nervous system get used to 5mg. Don't worry about your receptors, as Brassmonkey said, they will adjust to the new low dosage level.

[Lovemykids1234]

Altostrata Im so happy to hear from you. This has been a god awful battle. At 60 mg on Paxil after 15 yrs I started hearing music in my mind (auditory hallucinations), my thoughts became repetitive in my mind, I started clicking my tongue, tinnitus in my ears. Sleep was fine at the time. My libido took a big surge upwards for some strange reason. I had no clue what was going on. I immediately went to my functional medicine doctor who tested my hormone functioning, thyroid functioning, and adrenal functioning and all was well. After doing much research I figured out it was my antidepressant causing the problems. I went to my psychiatrist who tried to convince me all I needed to do was get off Paxil and get on another antidepressant and I would find relief. He had me wean off Paxil a half pill each week. While I was weaning he started me on Brintellix at a low dose. I stayed on that one for 6-8 weeks and got no relief. He then tried me on Prozac, Pristiq,Celexa, and Zoloft and I gave each of those 6-8 weeks to work. My last visit in his office he pretty much blew me off. So I made an appt with a new functional med doctor to see if she could help me make some sense of what was going on. She weaned me off Zoloft and me reinstate Paxil at 20 mg. That was in Dec 2016. At that time I was still hearing music in my mind, still thinking repetitive thoughts, tinnitus, feeling very confused a lot. She explained the whole concept to me about too much serotonin accumulating in my synapses and how receptors become downregulated. She told me to stay right at 20 mg and in time my receptors would start to come back. She also started me on supplement called Cerenity which has 5htp in it and inositol. I took it upon myself to start weaning myself down from the 20 mg to where Im at today at 5 mg to see if I noticed any improvement which I have not really. Still hearing music in my mind, not sleeping very well, thinking repetitive thoughts, still clicking tongue, still having tinnitus in ears. My nerves are so shot from having to go through this. What a nightmare.

[Lovemykids1234]

I first started having symptoms in Nov of 2015. During Jan through April of 2016 was when I was having thyroid, adrenal and hormonal tests run. From May through September of 2016 I was on my wild goose chase of trying all those different antidepressants out and giving each one 6-8 weeks to work. By the time I saw new functional med doctor in December 2016 she instructed me to wean off Zoloft which was the last one I tried and she had me reinstate Paxil at 20 mg.

[nz11]

welcome to sa lmk

 

I went to my psychiatrist who tried to convince me all I needed to do was get off Paxil and get on another antidepressant and I would find relief.

He had me wean off Paxil a half pill each week. While I was weaning he started me on Brintellix at a low dose.

I stayed on that one for 6-8 weeks and got no relief.

He then tried me on Prozac, Pristiq,Celexa, and Zoloft and I gave each of those 6-8 weeks to work. My last visit in his office he pretty much blew me off.

 

I am so sorry the medical profession have let you down like this.

 

I saw two Psychiatrists who both were completely useless in helping me. One who told me I needed to be "educated".

!!! oh my goodness.

 

I took it upon myself to start weaning myself down from the 20 mg to where Im at today at 5 mg

It appears to me that you have done this over a 3-4 month period.

Did you know withdrawal symptoms are delayed?

 

nz11

[Altostrata]

Lovemykids, be patient. It's only been a few months since you've been on 5mg. It can take quite a bit longer for your nervous system to adjust to the lower dose.

 

Are you still taking the supplement containing 5HTP? What other supplements are you taking?

[Lovemykids1234]

Altostrata yes I take something called Cerenity which contains the 5HTP. I also take Fish oil, a supplement for adrenals called Adreset, a probiotic, and magnesium. I feel so much better now knowing I have a support group. I feel like I have been drug through the trenches of hell. I have four children and I work full time. And this has been brutal!

[JanCarol]

Hey Luv - 

 

Please, be kind to the moderators who are trying to help you.  You posted:

 

 

 

Luvmykids1234
15 yrs on 60 mg Paxil 2001-April 2016
Started experiencing very weird side effects after 15 yrs. Auditory hallucinations, ringing in ears, clicking tongue, repetitive thinking.
Tapered to 20 mgs by December 2016
April 2016 down to 5 mg
Cant wait to get my life back! 

 

Please Please Put Your Drug History Into your Signature

 

Please tell us - 

April 2016 = 60 mg?

Dec 2016 = 20 mg?

 * were you having symptoms at this point?
** I checked this - a 10% taper would be roughly 23 mg by December, so - not bad, but are you listening to your body?

***when were the trials of Brintillex?  Prozac, Paxil, Celexa, Zoloft?  These would have made things worse.

Apr 2016 5 mg?

 * This is too fast.  20 mg to 5 mg should have taken more like 13 months.  You tapered at more like a 25% rate, which is dangerous, especially as you get to lower doses.

Okay:

 

 

I first started having symptoms in Nov of 2015. During Jan through April of 2016 was when I was having thyroid, adrenal and hormonal tests run. From May through September of 2016 I was on my wild goose chase of trying all those different antidepressants out and giving each one 6-8 weeks to work. By the time I saw new functional med doctor in December 2016 she instructed me to wean off Zoloft which was the last one I tried and she had me reinstate Paxil at 20 mg. 

 

Please, please please put this information in your signature.  We can't look it up every time.

 

This information is incredibly vital to helping you find the best way through.

 

Alto says, stay on the 5 mg now.  That's the way through.

 

It will be crucial for you to learn some Non Drug Techniques for Coping with Emotional Symptoms

Develop a toolkit, because this will take time, and patience.

 

I hope you see the sun today!

[Lovemykids1234]

I created my signature and saved it. Not sure how I attach it to my posts.

[Gridley]

It will be automatically attached to all your posts.