DixieChick: Paxil discontinuation - take 2

[DixieChick]

Hello everyone,

 

First I want to say THANK YOU for having this wonderful website.  It is truly outstanding in the lengths taken to inform and support those of us who have found ourselves in this battle.

 

I am in my 50's and have been taking Paxil Cr 12.5 mg for about 13 years.  I guess I can now say that I "had" been taking it for 13 years since I have now been off of it for a month  .

 

I was put on it after experiencing my first ever panic attack.  This panic attack came weeks after undergoing intense rounds of hormone injections in preparation for what turned out to be a failed in-vitro fertilization attempt.  Because it did seem to mellow me out (no more road rage during the morning commute), I continued to refill my prescription

 

I stayed at that dose for about 5 years.  After hearing so many negative stories about Paxil addiction in the news and from friends I decided the time had come to get off the drug.  I spoke to my doctor about getting off of it and he told me to taper over several weeks.  I ignored his advice and thought I was taking a safer route by tapering over a four month timeframe.  A few days after taking my last dose I experience horrible anxiety.  I couldn't leave the house for several weeks.  All I wanted to do was lie in bed or on the couch and cry.  I called my doctor during this time to tell him I was going through w/d and to ask what I should do.  He told me to reinstate - which I did but after several days of still not feeling better he told me double my dose.  I did so and then made an appointment with him as soon as I was able to leave the house again.  During the office visit he told me that I wasn't experiencing w/d but that I suffered from social anxiety.  I disagreed - at the time I was in upper management with a very large company and until that first panic attack had never suffered anxiety in any of the most stressful  situations I had found myself.  I couldn't convince him so he referred me to a psychiatrist.

 

I kept the appointment thinking that this doctor would be more knowledgeable about AD's and w/d.  I was wrong.  All he wanted to talk about was my social anxiety disorder.  He didn't recognize w/d as a reality.  I went that one time.  Following this appointment I quickly tapered back to my original dose of 12.5 mg.

 

So, fast forward eight years to the present. As of April, I am now semi-retired - I work part-time from the home (when I feel like it) and yes I am getting very spoiled with my current work schedule.  I've been eating healthy and exercising (I was able to get off my blood pressure medicine ).  I decided it was time to get off of the Paxil too.

 

In June I went to see my doctor again and yes this is the same doctor that prescribed it and thought I had social anxiety disorder.  Anyway, he could see the improvements I've made to my health and agreed it was a good time to get off of it.  But instead of tapering, he wanted me to quit cold turkey and take Klonopin for a couple weeks.  His explanation was that since i've been at the 12.5 level for so long I would experience the same w/d whether I tapered or went cold turkey.  He said this approach was discussed at medical conferences and that he had patients who had been successful it.  He said that while the Klonopin would help with the anxiety portion of w/d I would more than likely still have other symptoms such as "brain zaps".  Since anxiety was the only symptom I could recall from my first attempt to quit I hesitantly went along with it,

 

I took my last Paxil on June 13th.  The schedule for the Klonopin was to have been 5 mg in the morning and evening for the first week and then only in the morning for the second week.  After the first day on it, I began cutting it in half because it made me so drowsy but once the w/d kicked in I took the full 5 mg.  The second week I took 5 mg in the morning and sometimes 2.5 mg at night.  I took it a little longer than two weeks. I took my last dose of Klonopin July 3rd.  Happy Independence Day!!!

 

While I was taking the Klonopin I mostly experienced nausea, lightheadedness and brain zaps.  I found that exercising every morning helped tremendously.  Even on the days I really didn't want to - I made myself exercise.  I take vitamins every day including magnesium and fish oil which I think may have also helped.

 

This past week I've been on antibiotics for UTI which have made taking my vitamins difficult because I had to take it so many hours before or so many hours after taking vitamins.   I'm not sure if I got any vitamins in last week.  The last several days I have had periods of anxiety - nothing that keeps me in the house but very annoying.  I'm hoping that these will subside once I have been back on my vitamins for a few days.  So far I have resisted taking any more of the Klonopin.  I don't want to use one drug to get off another.

 

Any suggestions, insights and especially support would be most appreciated.

[DixieChick]

A little update.  Yesterday I woke up feeling lightheaded, nauseous and mildly anxious.  It was all I could do to get my work-out in but I did feel a little better afterwards.

 

I'm kind of wishing I had listened to my gut and tapered before getting off the Paxil.  I also wished I had done more research on what exactly causes the withdrawal.  I didn't know until after the c/t that my brain was basically going to have to rewire itself.  

 

The bad days don't outnumber the good or half/good days but they are there and when they are there I really hate it.  Today I feel a lot better.

 

It's been 4-1/2 weeks without the Paxil now and I'm praying that I don't wake up one day totally lost in w/d.  I'm drug free and I really don't want to reinstate.

 

Any thoughts?  Have I not really hit w/d yet?  Will it get worse?

[areyouthere]

Hi Dixie Chick. I am by no means an expert on this but have a pretty good inkling that Alto will recommend reinstatement of a low dose of Paxil. My understanding is that the sooner you do this the more likely it will be successful and then a slower, equally successful taper can proceed.

 

Please don't do anything until Alto pipes up but I wanted to give you an advanced start on getting used to the idea of reinstating.

 

You describe your symptoms very well and the details with Klonipon & the antibiotics are critical for the best interpretation ( by others here who are very experienced.. not me) of what you are experiencing.

 

This is really a great site with very knowledgable folk so look around. 

 

Welcome !

 

RU

[DixieChick]

Thank you RU.  If I end up reinstating I am probably going to have to go to another doctor to get a prescription for the regular Paxil.  I went to a clinic last weekend (part of the same hospital system as my doctor) for the infection and this doctor noticed in my records that I was no longer taking the Paxil.  She told me that her husband started taking Paxil while he was in medical school and tried to discontinue it a couple years ago doing a slow taper.  He had horrible w/d and had to reinstate.  He is nervous to try it again - and he's a doctor!   She was very understanding of my situation and I feel sure that she will give me the prescription if I decide to reinstate.

 

It is so hard knowing what to do especially on days like today when I feel "normal".

 

I know that these drugs can help people through tough situations but I wish I had known how hard getting off of them would be before I ever started taking them.  

 

Thanks again for your insight and I will wait to hear from Alto.

[areyouthere]

 

 

I know that these drugs can help people through tough situations but I wish I had known how hard getting off of them would be before I ever started taking them.  

 

 

Yuh. Isn't that the truth!!!

[Altostrata]

Welcome, DixieChick.

 

I would love to know more about the conferences where doctors discuss the best way to get people off psychiatric drugs. To my knowledge, switching them to Klonopin to cover up withdrawal symptoms is a common but unproven method that often doesn't work. And I wonder what they advise for getting patients off Klonopin???

 

I guess it's a good thing that at least they're swapping the medical equivalent of old wive's tales for tapering. It shows they recognize there's a problem.

 

If I were in your situation, I would indeed go back on a very low dose of Paxil, even 1mg, stabilize, then taper off by very small amounts. It comes in a liquid, see http://survivingantidepressants.org/index.php?/topic/405-tips-for-tapering-off-paxil-paroxetine/

[DixieChick]

Thanks for the advice.  I've got a call into my doctor right now hoping that he will call in the liquid formula. 

 

My day has gotten worse.  Had a bad crying spell in the middle of trying to get through my workout this morning.  I feel the bad spells are coming more often than not.

 

I am definitely going to reinstate - going to try 1 mg and pray that it gives me some relief.

 

Thanks for all the great information that you have pulled together in this website.

[Jemima]

Good to hear that you're willing to go along with a small reinstatement.  Withdrawal can indeed hit very badly even months after a cold turkey or too-fast taper. Please let us know how you're doing with the 1 mg.  Allow four to five days for it to take effect.

[DixieChick]

Thanks Jemima - My husband is picking up my prescription on his way home tonight.

 

Previously I had always taken the paxil in the morning.  Does he matter what time I take it?  If I take it tonight, should I take it again in the morning or just continue taking it in the evening?

 

I am going to start back at 1 mg and see how my brain reacts to that.  If I start feeling better I will hold there until I feel like I have stabilized - at the least several weeks.

[Jemima]

If you aren't suffering a lot from withdrawal symptoms, I'd wait until tomorrow morning to take the first 1 mg. dose.  Antidepressants are stimulating, so they're best taken in the morning.  I'm not sure what would happen if you took a dose tonight and another tomorrow morning, but I'm guessing that you'd end up with more Paxil in your system than you want.

[DixieChick]

The symptoms are on the fray right now ready to jump in.  I'm feeling a little anxious (increasing though because my husband doesn't want me to reinstate on paxil, he thinks I should try something else), very lightheaded (lying down helps)

 

I'm heading out now to pick it up - my usually supportive husband is tied up with a customer problem.

[DixieChick]

Took 1/4 of 5 mg klonopin last night to help take the edge off things until this morning when I reinstated the Paxil.  It was the first of it that I have taken since July 3rd and I don't plan on taking any more.

 

The doctor called in 10 mg tablets of Paxil instead of the liquid so I used my pill cutter this morning to cut it into eighths so I took about 1.25 mg this morning.  

 

I am either going to call the doctor and have him call in the liquid or look up the instructions for converting the tablets to liquid.

 

My symptoms this morning are limited to lightheadedness, dizziness and a little nausea.  Some mild anxiety. 

[DixieChick]

Good Morning All.   I took another 1.25 mg this morning.  Feel a little better today - not as lightheaded as I was yesterday but still don't feel safe driving.

 

The doctor called me regarding the liquid Paxil.  He knows that people go through w/d from Paxil but doesn't recognize how severe it can be.  He thinks after a few weeks off of it everything should be fine.  I suggested he do a lot more research if he is going to continue to prescribe the stuff.  Anyway, he agreed to call in the liquid.  My pharmacy had to order it but it should be in today.

 

My husband's hesitation regarding me reinstating was short-lived once I explained that I was only going to take about 1 mg.  So everything is good there.

 

I'm hoping that I continue to improve today.  I really don't want to increase the dose.

 

Hope everyone else is improving too!  

[DixieChick]

okay - not feeling as well as I did this morning.  Getting more lightheaded, nauseous and a little anxious.  Not sure what to do.  Don't want to take any more but I don't want to miss my window for reinstatement.

 

Suggestions....

[Altostrata]

It takes about 4 days for a drug to reach steady-state in your bloodstream. Your Paxil dosage has not reached this steady state yet and you may get fluctuating effects.

[mammaP]

 " I suggested he do a lot more research if he is going to continue to prescribe the stuff. "

 

Well done you!! I'm in awe, wish I could do that with my doctor! It's great you're getting the liquid,

I pick mine up tomorrow ready for my next drop. Hope you are feeling better very soon. 

[DixieChick]

Thanks Alto.  I'll give it a couple more days at this level to see if I reach steady-state.  its been kind of up and down today.  I feel great when I am laying down but get real lightheaded and nauseous when I walk around for any length of time.

 

I have to laugh at your disclaimer - I'm not sure there are any knowledgeable medical practitioners on this subject - at least not in my neck of the woods.

 

Thanks for everything you've done!  This forum is a godsend.

[DixieChick]

Thanks MammaP - I've been going to him for so long it easy to speak my mind with him.  He and I are the same age and he and I used to go to the same doctor until he retired.  My previous physician recommended him and he is great in all other areas - just lacking in this one.

 

Hope you are doing better too!

[DixieChick]

I converted to the liquid Paxil this morning.  Discovered I need to update my math skills  .  The pharmacist gave me three different size syringes so I can taper.  One of them is actually for liquid medications while the other two are for giving injections (he removed the needles).  I took 3/5 of one ml to try and mimic 1/8 of 10 mg pill.  If I did my math right - 1 ml equals 2 mg so 1 mg would be .5 ml.  Since I was taking a little over 1 mg i took 3/5 of a ml instead of 1/2.

 

Today is the best that I have felt for the last few days.  I was actually able to get out of the house for a little while.  My sister picked me up and we ran a few errands.  I started feeling a little crummy this afternoon and had to lie down for a while.

 

Although I'm feeling a little better, I don't feel good enough to resume normal activities (work, exercise, life in general).  I missed my weight watchers meeting today for the first time in 12 weeks.  I know I've lost more weight because I don't have much of an appetite but this isn't how I want to lose it.  When my gp told me it would be easier to lose weight once I got off the paxil I don't think this is what he had in mind.

 

I guess I am wondering will I continue to see improvement since reinstating after I c/t'd 5 weeks ago?  I'm guessing that since I am seeing progress each day I want to hold off increasing the dose but how do I know for sure.

 

Any advice from someone who reinstated after doing a c/t would be appreciated.  Thanks

[tezza]

Hi DixieChick,

 

Welcome! Yes, as long as you're seeing improvement, that's good. I wouldn't try to 'fix it' since its going ok so far.

 

It sounds like you're stabilizing on this small amount.

 

Keeping a daily log of symptoms, and rating the severity, is a tremendous help.

[DixieChick]

Thanks Tezza.  I printed out the "withdrawal symptom checklist" from Joseph Glennmuller's book but haven't used it except to validate that some of the things that I am experiencing are indeed w/d symptoms.  

 

I've been updating a journal daily but I think I will also start filling out the checklist and rating the severity.

 

I really hope that I am stabilizing on this dose.  I will consider it a blessing if I am able to reinstate at this dose.

 

I've been reading so many posts on this website and I feel so fortunate that I am only trying to get off one a/d and that it was a low dose.  There are far too many stories of people trying to get off of a/d cocktails.  My heart goes out to all of them. I can't imagine what it must feel like to try and taper multiple drugs at one time.  I feel guilty for complaining about my symptoms.

 

Thank you so much for the support that all of you give!  It means so much to know that you are not alone in these struggles and to be given the faith that there is a light at the end of the tunnel.

[DixieChick]

Hey Tezza - I saw that you are also located in the south.  Have you been getting as much rain as we have?  We set a new rainfall record for July on the 3rd day of the month.  

[tezza]

Hey DC,

 

Yes!!! It's been raining SO much here! It was actually cold here on the 4th and I don't ever remember a cold day in July, here. This is crazy weather...

[DixieChick]

After a couple of days seeing progress I feel a little worse today. Woke up in bed this morning lightheaded, nauseous and a little anxious.  It was 30 minutes past the time that I usually take my dose so I don't if it because I hadn't taken it yet or if reinstating at this dose wasn't 100% successful for me.  I even had a brain zap which I hadn't had in a while.

 

I reinstated at 1.2 - 1.25 mg (initially reinstated cutting tablets now on liquid)  from a 12.5 mg cold turkey.  I should say that 3 nights ago i also took .25 mg of Klonopin because I felt real bad.  The day after was the first and only day that I felt good enough to get out of the house for a little bit.

 

Not sure if I should continue at the 1.2 or increase it slightly.  I haven't eaten well lately because my stomach doesn't really want food.  I want to lose weight but not this way.  I'd really like to exercise but get way to lightheaded.  When I initially c/t'd I would be a little lightheaded but was still able to exercise and would feel better afterwards.  I just can't make myself do it now.

 

Should I increase my dose a little?  Also, what should I do about the K.  I was only on it for about 2-1/2 weeks and at varying doses.  Would it hurt if I took a small dose only on days when I feel really bad or should I stay completely away from it?  It does make me feel better but I don't want to mess up my CNS anymore than it already is. (I'm pretty sure I answered my own question in that last statement but I would like a 2nd opinion)

 

Thanks

[Skyler]

Should I increase my dose a little?  Also, what should I do about the K.  I was only on it for about 2-1/2 weeks and at varying doses.  Would it hurt if I took a small dose only on days when I feel really bad or should I stay completely away from it?  It does make me feel better but I don't want to mess up my CNS anymore than it already is. (I'm pretty sure I answered my own question in that last statement but I would like a 2nd opinion)

 

Thanks

 

Dixie.. I got stuck with a lonnggg Klonopin taper, 2 + years now. I think you are playing with fire.  I understand your need for a respite, but it's sooo dicy.  If you want to keep K. as an option, save it for exceedingly rare times, so you know there is an emergency bail out if things just get too bad. 

[DixieChick]

Thanks Skyler.  That is kind of what I was thinking.  Any thoughts about increasing the dose a little or should I hold steady a little longer?

[Skyler]

Thanks Skyler.  That is kind of what I was thinking.  Any thoughts about increasing the dose a little or should I hold steady a little longer?

 

I'd go up... but I'm not an AD person, so get further input on the suggestion below. 

 

From your intro..

"His explanation was that since i've been at the 12.5 level for so long I would experience the same w/d whether I tapered or went cold turkey. "

 

"I took my last Paxil on June 13th."

 

Did you have any improvement at all when you went to 1.2 mgs? 

 

Maybe ease up on what you are taking now to make sure you don't have an overly sensitive response.  It would be a good idea to add this part to your sig, maybe highlight it so folks can get a quick take on where you are now.

[Altostrata]

Since you cold-turkeyed from 12.5mg, it may take more than 1.2mg to reinstate. You might try more, maybe 3mg, for 4 days. Go slow, you'll have to figure out what the right dosage is for you.

[DixieChick]

 

 

Did you have any improvement at all when you went to 1.2 mgs? 

 

 

 

 

 

I did see a little improvement at first but don't see any progress and am a little worse today.  I am forcing my self to eat.  I feel okay as long as I am lying down but standing brings on the lightheadedness and nausea.  I'm drinking a lot of water which seems to help but eating is a chore.  I am taking magnesium and fish oil tablets.

 

 

 

Since you cold-turkeyed from 12.5mg, it may take more than 1.2mg to reinstate. You might try more, maybe 3mg, for 4 days. Go slow, you'll have to figure out what the right dosage is for you.

 

I will go ahead and bump it up to 2.5 mg for 4 days and see how that goes.  

 

Thanks Skyler and Alto

[WhoAmI]

 

I know that these drugs can help people through tough situations but I wish I had known how hard getting off of them would be before I ever started taking them.  

 

 

Ditto again on this one!!

[DixieChick]

 

 

I know that these drugs can help people through tough situations but I wish I had known how hard getting off of them would be before I ever started taking them.  

 

 

Ditto again on this one!!

 

I felt good on them for 13 years but all I remember now is how awful I feel getting off of them.  Wish I had never taken that first pill.

[DixieChick]

I took another 1.2 mg about 4 hours ago to bring my total for today up to 2.4 mg.  I feel worse now than I did earlier.  A lot more anxious.  Could this have been too much.  Should I try just 2.0 mg tomorrow?

 

Really confused and feeling crappy.

[mammaP]

I'm sorry you are feeling rotten. I think it can take a week or 2 to feel better after reinstating.

If that second dose made you feel worse it might be too much, I'm not an expert but from my 

own experience it was better to hold for a while and see what happens.  I'm sure someone 

will be along soon who can advise you properly. Hope you soon feel better, it's a horrible thing 

you are going through. 

[DixieChick]

Thanks MammaP.  While I wouldn't wish this on my worst enemy it helps to know that others have been through this hell,  understand what you are going through and made it out the other side in one piece.

 

Were you able to get the liquid formula for your meds.  It is so much easier to measure it this way,

 

I too think it might have been too much.  If I don't hear back from someone by the time I need to take my next dose I will probably take just 2.0 mg.  I can also take a little more if need be.

 

Hope you continue to progress.  Hugs

[DixieChick]

Started feeling a little better last night.  Also started to get an appetite back.  Woke up feeling pretty good so I only took 2.0 mg this morning. I think the up-dose to 2.4 might have been too much.  Have felt pretty good most of the day so far.  Kind of scary.  Really hoping that this continues and that I can stabilize at this level.

 

Thanks for all the support.  

[mammaP]

Glad you are feeling better, it amazes me how rapidly a mood can change, just a teeny amount can make such a huge difference.

I have my liquid and will start it with my next drop. I have to work out the dosage which will be a challenge for my pea brain! 

Hope you can stay well for a long time.