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luvkids: What do I do now?

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luvkids

Been on 20 mg. of paxil for 20 years. Started due to depression during a difficult marriage that was heading toward divorce.Tried to get off it multiple times, too fast, and could not tolerate the withdrawal symptoms and went back on it. Doctor told me I likely would need it forever. Did not like that advice! In October 2018 I failed to refill my prescription soon enough and cut my pills in half to 10 mg. so they would last till I got the refill. I found I was ok on 10 mg so stayed there for 3 months. That same month I told my doctor that I was going off Paxil, and he said that was a good thing.  He prescribed Zoloft if I felt I needed to get back on an AD, but I have never filled that prescription.  Over a period of 6 months, Oct. 2018-May 2019, I continued to gradually taper off until completely discontinuing in mid-May 2019. I had  no withdrawal symptoms during this period. I have been completely off Paxil, symptom-free, for 3 months.  In early August 2019  I began to have recurring insomnia. I have struggled with some degree of insomnia most of my adult life, but this went on for multiple nights.  In mid August I got slammed with depression for several days in addition to insomnia. The depression eased a bit, only to be replaced by anxiety. I took .25 mg. of Xanax for 5 nights to get some sleep. Would sleep soundly for 6+ hours with xanax, awaken, and feel the anxiety begin again. I know how addictive Xanax is and will not continue to take it. I have taken only melatonin for sleep the last 3 nights and have gotten very little sleep. Depression and anxiety have eased...just exhausted. I assumed after 3 months being off Paxil with no symptoms that I was home free. I DO NOT want to go back on Paxil. Is this a normal reaction after 3 months drug-free, and if so, any suggestions how to get thru it, particularly the insomnia? My doctor prescribed trazodone for sleep, but I have not taken it.  I am hoping that since I have not had all the awful physical symptoms that many on this forum have described , hopefully I can get thru this without restarting Paxil.

Edited by Shep
updated title with new username

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Gridley

Welcome to SA, luvkids.

 

Withdrawal symptoms starting after three months off is an extremely common and normal occurrence.   Many members report this happening.  The withdrawal symptoms you report are also typical.  

 

 
 
It's good you've stopped the Xanax, which is extremely addictive.  Trazodone also causes dependency after only a short time.

To get through this, we have several suggestions.  We strongly recommend non-drug coping skills.  Please take a look at the links inside the following link and see which techniques you think might be helpful to you.
 

 

Here are some suggestions regarding insomnia.
 
Tips to help sleep - so many of us have that awful withdrawal insomnia
 
 
Trick and tips to fall asleep faster
 
This link contains helpful information, including insomnia and also non-drug coping skills.  
 
 
Some members have found Melatonin helpful with insomnia.   
 
 
It's best to start at a very low dosage, such as .25mg, and gradually increase if needed to the lowest effective dose.  
 
We don't recommend a lot of supplements on SA, as many members report being sensitive to them due to our over-reactive nervous systems, but two supplements that we do recommend are magnesium (magnesium glyciante is a good form) and omega 3 (fish oil). Many people find these to be calming to the nervous system. 

 

 

 

Please research all supplements first and only add in one at a time and at a low dose in case you do experience problems.
 
This is your Introduction topic, where you can ask questions, post updates and connect with other members.  We're glad you found your way here.
 

 

 
 
 
 
 
 

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luvkids

Thanks for the reply.  The anxiety has returned...comes and goes at random, sometimes pretty severe.  Since I came off Paxil in only 6 months, am I going to need to go back on it and taper off more slowly to eliminate withdrawal symptoms? I had NO symptoms while going off it, and have been good for 3 months completely off.  I have a doctor appointment next week....my husband made it for me since he was concerned about my symptoms.   He had never seen me depressed,  crying, hardly eating, and anxious.  This is a new doctor since my previous one moved away.  I am almost certain he will want to put me on some type of drug, which I don't want.  Any suggestions as what to do at this point? Go back on Paxil, maybe a smaller dose, or just tough it out?  I was doing fine emotionally while on Paxil with no side effects, but hate being on drugs and feel that since the cause of the original depression is long resolved, I should no longer need to take it.  And I have osteoporosis,  which Paxil can make worse.  But the way I currently feel, I would rather be on it forever just to feel normal.  Was it a bad move for me to go off it?

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ChessieCat

The only known way to reduce withdrawal symptoms is to take a small amount of the drug which the brain has adapted to.  SA recommends a small dose.  It is better to start with a small amount and increase if needed than to risk taking too much.  It takes about 4 days for a dose to get to full level in the blood and a bit longer for it to register in the brain.

 

The idea of reinstating isn't to get rid of withdrawal symptoms completely but to bring them to a bearable level.

 

Please carefully read Post #1 of this topic:  About reinstating and stabilizing to reduce withdrawal symptoms

 

If you decide that you would like to try reinstating we can suggest a dose for you to try.

 

 

We need to know the details of your Xanax usage.  Dates, doses please.

 

 

So that we can see your history at a glance please create your drug signature using the following format.   Keep it simple.  NO diagnoses or symptoms please - thank you.

  • details for last 2 years - dates, ALL drugs, doses
  • summary for older than 2 years - just years and drug/s

Account Settings – Create or Edit a signature

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luvkids

ChessieCat, you said you could suggest a dose of Paxil to try if I decide to reinstate.  I had been on 20 mg. for 20 years, did a 6 month taper Oct. 2018-May 2019, quit at 5 mg in May.  What do you recommend I start back up on if I choose to do so?  I have a doctor appointment tomorrow and have no idea what the doctor will say to address my withdrawal symptome.  Thanks.

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ChessieCat

Q:  Are you currently taking Xanax or any other drug?  Even intermittently?  If yes, how often and what dose?  And when did you last take it.

 

If you are taking Xanax it might be best to assess your usage before you try reinstatement of Paxil, because intermittent use of a benzo can cause rebound anxiety.  It's best to only make 1 change at a time, so as not to confuse things.

 

SA recommends taking a small dose.  During the time you have been off Paxil your brain will have made some adaptions to not getting the drug.  If you take too much it might make things worse.

 

Q:  Have you read Post #1 of the reinstatement topic?  If not, please do so.  It is important that you understand it.

 

Because you have been off the drug for about 3 months I think it would be a good idea to make a tiny reinstatement to see how you respond to it.  You could try 0.25mg Paxil.  It might be enough or you might need to increase it but please note that it is better to start with a small amount and then increase by small amounts than to risk taking too much.

 

It takes about 4 days for a dose to get to full level in the blood and a bit longer for it to register in the brain.  It is recommended that you keep daily notes on paper of your symptoms so you can assess how the reinstatement is affecting you.  These notes can also be helpful to try and work out if you might need a tiny bit more Paxil.

 

Also note that the idea of reinstatement isn't to get rid of the symptoms completely but to bring them to a bearable level.

 

If things immediately get worse, stop the drug.  If you don't feel worse I suggest staying on the 0.25mg Paxil for 1 week and then you/we can reassess about whether you might need to increase the dose.

 

You will need to try and stay as calm as possible and try not to panic.  If you become anxious it will make it difficult to know how the reinstatement is affecting you and whether the anxiety is causing any symptoms which are not from the withdrawal or reinstatement.  Also, when we panic we can make bad decisions.  We have had members here who have panicked and ended up chopping and changing their doses and/or taking too much.

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ChessieCat

You might find it helpful to write a script and rehearse what you are going to say so that you can get what you need to taper.  Be calm, gentle but assertive.  You are the customer, it is your body.  Use words like I'd like to try this, or I'd prefer to do it this way.  If a suggestion is made that you don't want to follow, say I'd like to think about it before making a decision.

 

how-to-talk-to-a-doctor-about-tapering-and-withdrawal-what-to-expect

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luvkids

Thanks ChessieCst.  The last time I took Xanax was 8/24.  I had taken it 5 nights in a row since my insomnia was making me increasingly exhausted to where I had a hard time functioning.   Plus we were on vacation with friends and I desperately wanted some sleep so I could enjoy myself.  I normally do not use it multiple nights; just on rare occasions when insomnia is bad.

You mentioned that Xanax could cause rebound anxiety....I am wondering if that is what I am experiencing.   Could you explain rebound anxiety?  This generalized and at times overwhelming anxiety is not something I have experienced before.

 

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ChessieCat

Q:  When was the time before 24 Aug 2019 that you took Xanax?  And how often?

 

I don't know much about benzos.  I'll check with the other mods.

 

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luvkids

As I mentioned, I took xanax for 5 nights...8/20-8/24.  Prior to that I do not remember when I last took it.  I normally just take it one night as a last resort for bad insomnia.  No particular schedule to it and likely no more than once a month.  When we travel I usually take one the first night out for insomnia.  I do not take any other drugs.

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Shep
20 hours ago, luvkids said:

As I mentioned, I took xanax for 5 nights...8/20-8/24.  Prior to that I do not remember when I last took it.  I normally just take it one night as a last resort for bad insomnia.  No particular schedule to it and likely no more than once a month.  When we travel I usually take one the first night out for insomnia.  I do not take any other drugs.

 

If this is the longest time you've taken Xanax in a row, you likely aren't dependent on it, especially since you didn't take it more than once a month. It takes 2 - 4 weeks to develop dependency, although there are people who've become dependent in as little as 10 days. 

 

Is the anxiety worse since you stopped on August 24 or is it about the same? 

 

On 8/30/2019 at 3:11 PM, luvkids said:

And I have osteoporosis,  which Paxil can make worse. 

 

Are you taking any drugs to treat the osteoporosis or any other drugs for other health conditions?

 

if so, please list them in your signature. 

 

Account - Settings - Create or Edit Your Signature

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luvkids

Anxiety is about the same since last dose of xanax.  Worse in the mornings, tho I have had 3 mostly anxiety-free days in the past week.  Tuesday I felt perfectly normal all day, but anxiety returned Wednesday.  It is at times almost unbearable.  And the insomnia is horrible.  Always exhausted.   Saw my doctor on Tuesday and he said that since I had gone 3 months symptom- free off Paxil that I am likely relapsing rather than having withdrawal symptoms.   My last dose of Paxil was 5 mg. In May.  He prescribed 10 mg (smallest amt. available, ) and said I could cut it to get a smaller dosage.  You recommend only .25 mg to start.  What is that based on?  And how do I turn 10 mg into .25 mg?  I had no real reason to go off paxil when I did....no side effects and was doing fine.  I just don't like being on drugs.  Was I foolish to go off it?  And do some people really need these drugs?

I am not on osteoporosis meds nor any other drugs.

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Rhiannon

Just to say, doctors don't know this, but we see it here a lot:  it is very common with antidepressants for symptoms of a cut or CT to kick in at 3-6 months out. Most people are told it's "the return of the illness" and they are put back on medication. That is certainly what always happened to me. 

 

Dr. Stuart Shipko, one of very few physicians who has studied withdrawal, mentions it in his writings too.

 

Every time I have tried to rapidly come off an AD or CT in my life, I got through the initial period with barely noticeable symptoms, but got kicked hard after about 10-12 weeks. It's a common pattern, I would say it happens in more than half of cases, maybe something like 2/3.

 

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LadyBartonella
1 hour ago, luvkids said:

I had no real reason to go off paxil when I did....no side effects and was doing fine.  I

Me too. Even I was feeling better during tapering than on drugs.

This is familiar. Then I crashed. 

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luvkids

 

So how do you know if, after 3 months off the drug, that it is withdrawal rather than relapse?   Seems like after that length of time withdrawal would not be happening,  or at least not just starting.  Is there any science behind this?

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luvkids

Rhiannon, what did you do when you got "kicked hard" at 10-12 weeks off your AD?

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luvkids

Went to the pharmacy to fill paxil prescription to have on hand if I decide to reinstate.  Dr. just wrote prescription 2 days ago.  Pharmacy would not let me fill it, saying they needed to contact the doctor about prescribing a "safer" alternative.  What????  Pharmacist said they do not give paxil to people 65+ due to an increased risk of falling.  So likely to get a different SSRI.  Will this make things worse,  starting a different drug after 3 months off paxil?  I intend to take a small dose, if I do it at all.  Any thoughts?

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ChessieCat

The suggested dose of Paxil to reinstate to begin with is only 0.25mg and hopefully that might be enough.  However, if you did need to increase you may not need to take any more than 1mg, but if you do increase you do it in small updoses, not all at one.

 

It is generally better to reinstate the same drug which your brain has adapted to than to change to a different drug.  There are several reasons for this.  Withdrawal symptoms for the original drug which the new drug doesn't cover, start up / side effects / adverse reaction to the new drug.  You will not know what is causing any issues.

 

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ChessieCat

Please let us know what you decide.

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luvkids

Doctor prescribed Celexa.  Said he could no longer give me Paxil due to my age and the supposed risk of falls.  Today was a great day...no symptoms at all.  I have had 2 days like that this week.  Could I be getting thru this crud?  Took 600 mg. magnesium glycinate the last 2 nights and actually slept well for the first time in weeks.  At this point I am going to hold off on starting the Celexa.  I do have a bunch of left over Paxil which I may use if I decide to reinstate.  Not sure what to do....hoping I am on my way out of this without more drugs.

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Cocopuffz17
4 minutes ago, luvkids said:

Doctor prescribed Celexa.  Said he could no longer give me Paxil due to my age and the supposed risk of falls.  Today was a great day...no symptoms at all.  I have had 2 days like that this week.  Could I be getting thru this crud?  Took 600 mg. magnesium glycinate the last 2 nights and actually slept well for the first time in weeks.  At this point I am going to hold off on starting the Celexa.  I do have a bunch of left over Paxil which I may use if I decide to reinstate.  Not sure what to do....hoping I am on my way out of this without more drugs.

If you can withstand it I would say stay off the drug. I am 7 months off Paxil, I didn’t get hit with PAWS till 6 months. The fatigue was the big thing for me. But now I’m getting windows so I know it’s getting better. I will not go back on this ****, it has destroyed my body. 

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ChessieCat

My personal opinion.  I think there is more chance of issues from taking a new drug than the risk of falling from taking a very tiny amount of Paxil.  Did you tell the doctor what dose you were planning to take?

 

If you reinstate Paxil from the supply that you have and you then need to get more, if you can't get if from your current doctor you might need to see a new doctor.  If that is the case you will need to make sure that you get the prescription before the current batch runs out so allow plenty of time.

 

The maddening thing about it is that the doctor was "happy enough" to prescribe it for you all this time so what's the big deal now?

 

Remember, you are the customer.  You might need to say thank you for bringing that to your attention and that you understand their concern, but I would prefer to stay with Paxil, or something along those lines.  But of course it's up to you.

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luvkids

I think the doctor does not have a choice in whether or not to prescribe Paxil.  Apparently the FDA has listed it as a drug not to give to seniors due to risks of falling.  I have Kaiser, and I believe the doctors have to follow what the pharmacy tells them to do in prescribing.  This is a new doctor to me, and the last time I refilled the Paxil prescription was 11 months ago (different doctor).  Apparently sometime in the last year the FDA issued the warning.  So I think he would get in trouble if he prescribed it to me.

Meanwhile, when I have a really good day, like yesterday, with absolutely no bad symptoms, I don't even think about restarting the drug.  Today was a bad morning, and I once again considered it.  Much calmer this afternoon.  So are "windows" typically like this...a whole day where I feel perfectly normal?  It was such a joy to feel well and happy!  Two days like that in the last 5....I assume that is a good sign?  Sometimes I regret ever going off Paxil...I felt fine on it and had no real reason to go off it, other than hating being on a drug. And then I have a great day and think the **** is over.  

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ChessieCat
20 minutes ago, luvkids said:

I think the doctor does not have a choice in whether or not to prescribe Paxil.  Apparently the FDA has listed it as a drug not to give to seniors due to risks of falling.  I have Kaiser, and I believe the doctors have to follow what the pharmacy tells them to do in prescribing.  This is a new doctor to me, and the last time I refilled the Paxil prescription was 11 months ago (different doctor).  Apparently sometime in the last year the FDA issued the warning.  So I think he would get in trouble if he prescribed it to me.

 

I will check with the other mods about this to see if they know anything about it.

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ChessieCat

Seems that the only way would be to go to a non-Kaiser doctor.

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Shep
13 hours ago, luvkids said:

I think the doctor does not have a choice in whether or not to prescribe Paxil.  Apparently the FDA has listed it as a drug not to give to seniors due to risks of falling.  I have Kaiser, and I believe the doctors have to follow what the pharmacy tells them to do in prescribing.  This is a new doctor to me, and the last time I refilled the Paxil prescription was 11 months ago (different doctor).  Apparently sometime in the last year the FDA issued the warning.  So I think he would get in trouble if he prescribed it to me.

 

I can understand not wanting to get someone started on this drug for that reason, but you are already on the drug, so what your doctor is doing is sending you into a cold turkey withdrawal. And that is by far more dangerous. 

 

You may want to show your doctor the medical journal articles on withdrawal. Here is one thread about this, but you can find many more in the Journals section on this site.

 

Papers about prolonged antidepressant withdrawal syndrome

 

You'll notice that Paxil is listed as being one of the worst offenders of all the antidepressants when it comes to withdrawal. 

 

If your doctor is determined not to prescribe this, as ChessieCat noted, you may want to find another doctor outside of that network. Here are some links to help you find someone who is competent. 

 

Recommended doctors, therapists, and clinics

 

If you live in or near Pasadena, you may want to contact Dr. Stuart Shipko:

 

Stuart Shipko, MD Pasadena, CA

 

Another link for recommended doctors comes from the Mad in America site:

 

Mad in America - Provider Directory

 

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luvkids

An update.  I have not started/restarted Paxil or any other AD.  Last Thursday was the day the pharmacy said I could not have Paxil.  It had been a bad day, and I nearly had a meltdown in the pharmacy.  I had a good cry when I got to my car.  In retrospect, I am glad they refused the prescription, since I had planned on reinstating a small amount of Paxil that day.  But I was forced to wait another day to see what my doctor would say.  I woke up anxiety-free on Friday, and have had six great, symptom-free days since then.  The insomnia has improved with the help of a sleep supplement and magnesium at bedtime.  I am hoping and praying that I am DONE with this withdrawal business!  Is it possible???

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luvkids

I understand the windows and waves pattern.  My question is how long do you have to be completely normal feeling and symptom-free before you can say that you are completely healed?  How do you know if you are in the final window with no more waves to come?  Surely it does not go on FOREVER....

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ChessieCat

It's an individual thing.  You need to be aware that even if you are chugging away smoothly for a long period of time, if you experience stress you might find some symptoms pop up again.  And remember even good things like taking a vacation can be stressful.  It is good to be aware of this so that you don't start overdoing things just because you are feeling much better than you were.  Even members who have done a slow taper and are off there drug/s need to be careful and look after themselves and try to avoid/limit things which might upset there nervous system.

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luvkids

Three+ weeks feeling great with no withdrawal symptoms.  I have been taking 400 mg. magnesium glycinate and melatonin at bedtime and have been sleeping very well most nights....just need to avoid caffeine in the afternoon.  Soooo glad to have found something that helps with insomnia.  After talking to my doctor and informing him that I did not go on celexa, he told me that Paxil has a FDA black box warning for anyone over 65 due to a tenfold risk of falling.  He said he would be setting himself up for a possible lawsuit if he prescribed it.  Very glad I did not start any AD again.  I am hoping  when we go on an RV trip in a few weeks that I will not get any symptoms.  My Paxil withdrawal, 3 months out, started when we were on vacation in August, and I had been very stressed out getting ready to go.  It was so hard being in one of my favorite places and not being able to really enjoy it.  I am going to do my best NOT to stress myself out in getting ready for this next trip.

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Shep

Thanks for the update, luvkids. Sounds like you're doing really well. I hope that continues and you'll write a success story in a few months. 

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luvkids

A brief recap.  25+ years on Paxil.  Did a 6 month taper starting October 2019.  Last dose May 2019.  3 months symptom free.  August 2019 hit with depression and anxiety after 3 months symptom free.  Had lots of BAD days, interspersed with some good days.  This lasted about a month.  From mid September 2019 to mid February 2020I was symptom free.  5 months with no symptoms and feeling I was finally over the delayed withdrawal.  On February 16 I awoke with anxiety and have had  3 bad days with mild to severe anxiety this past week, plus insomnia.   So, in conclusion, I have had 3 symptom free months followed by 1 bad month, and then 5 symptom free months.  Is this a normal pattern?  5 months anxiety free, only to have the anxiety return?  Is this STILL withdrawal symptoms?  I have been Paxil-free for 8 months.  Should I just tough it out again?  After the 5 good months I truly thought I was DONE!  Please advise.

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Gridley
19 minutes ago, luvkids said:

Is this a normal pattern

It is very common in withdrawal for symptoms to hit at the 3 month mark and around the 8 month mark, so you fit the pattern just about perfectly.  There's no way to predict how long withdrawal will last.  It sounds as if you're generally doing pretty well.  

Things should very gradually improve, with some bad spells but with a generally upward curve.

 

I'm re-posting two links previously provided.

 

Windows and Waves Pattern of Stabilization

 

See also:

 

are-we-there-yet-how-long-is-withdrawal-going-to-take

 

 

 

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luvkids
On 2/22/2020 at 7:57 AM, Gridley said:

It is very common in withdrawal for symptoms to hit at the 3 month mark and around the 8 month mark, so you fit the pattern just about perfectly.  There's no way to predict how long withdrawal will last.  It sounds as if you're generally doing pretty well.  

Things should very gradually improve, with some bad spells but with a generally upward curve.

 

I'm re-posting two links previously provided.

 

Windows and Waves Pattern of Stabilization

 

See also:

 

are-we-there-yet-how-long-is-withdrawal-going-to-take

 

 

 

 

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luvkids

So I had been doing just fine till this covid stuff started.  Been off Paxil for 14 months, since 4/2019.  Had a month of delayed withdrawal 8/19.  No problems till 2/20 when I had 1 week of symptoms.  Doing great, right?  Then covid hit.  At first I described myself as a bit stressed.  I would feel anxious while shopping in a store, but the anxiety would leave when I left the store.  That went on thru April....occasional anxiety feelings, mostly like I had a lump in my throat.  I attributed it to anxiety over covid.  During May and June the symptoms got worse...throat lump, chest tightness and pain, stomach knots, rapid heartbeat, and a general overwhelming anxiety.  Strangely enough, I had never experienced much anxiety before going off of Paxil.  My previous delayed withdrawal symptoms were mainly stomach knots and general overwhelming anxiety, which would ALWAYS disappear in  the late afternoon, so in the evenings I felt fine.  This stuff sometimes starts in the morning, sometimes later, and can last ALL day.  I talked to my doctor, who said that mental health issues have skyrocketed during covid, with many people experiencing problems who had never had any before.  The longest stretch of delayed withdrawal I had before was 1 month, and it got gradually better, less and less, over the month.  This has been pretty consistent for 2+ months now.  I assume it will end when the pandemic end, but I don't know if I can last that long.  So my question is, is this more delayed withdrawal, or just covid anxiety?  I am not consciously thinking about the disease all the time or really afraid of getting it.  I am just not sure what to do about it.  I REALLY do not want to go back on an antidepressant.....anyway, I am not so much depressed as anxious.  Deep breathing and exercise do not help.  Any suggestions on how to get thru this would be much appreciated.

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