Clairest in the Netherlands, 19 years on paroxetine

[Clairest]

Hello everybody, I am glad I found this forum. I'm a female of 52 years old, living in the Netherlands.

 

I depended on paroxetine for 19 years. It did help me very much. Thankful for that.

I most probably do need (will need) a serotonine-reuptake-inhibiting drug for all my life.

I am trying now (started on november 13 last year) for it not to be paroxetine any more.

 

I tried switching to fluoxetine, decided for it together with a psychiatrist, saw him five times now. Tried in november, december, january and february. This switch to fluoxetine has not been a success, but not a complete failure either. I now think it served as a stage in between, that is how I see it now, at this moment. The last dose of 20 mg fluoxetine I took on February 11th. Following that I took half the dose (10 mg) on seven days (12th-18th). I took no dose of fluoxetine anymore on 19th 'till now, so this is the fifth day of taking no dose.

 

[Clairest]

I try for my serotonine-reuptake-inhibiting drug to be Saint John's Wort now, since last sunday.

 

Started Lamberts One-a-day, providing 1000 micrograms of hypericine. I have prior experience with taking Saint John's Wort, and with it helping me, for a year. This was in 2000/2001. This was the one year before I started on paroxetine, which helped me even better, on which I stayed for 19 years.

 

I do not know whether Saint John's Wort will really be up to the job, but I give it a chance now. My psychiatrist is sceptic about this new choice, but allows me to try.

 

[Clairest]

My symptoms, which might be paroxetine withdrawal symptoms, are impaired sleeping and agitation.

 

My psychiatrist proposed a direct hard switch, replacing 20 mg paroxetine with 20 mg fluoxetine. I tried this for eight days in november. I have an Autism Spectrum Disorder so regulating and managing myself usually is a tough job. Being increasingly agitated, jittery, impulsive, my emotions uncontrollably escalating, I desperately needed to stabilize and saw no alternative but taking paroxetine instead of fluoxetine again. I did so for three days in a row. I felt very well on the second and third day. Much better than before even. Better than in months. It seemed to me that the fluoxetine, still in my blood, added a lot of positive energy to the stability of paroxetine. I was more spontaneous in my actions, dared undertake things I had not done in a long time.

 

So I started taking half of each drug combined, daily. Half a tablet of fluoxetine (10 mg) and half a tablet of paroxetine (10 mg). When I saw my psychiatrist again, I confessed to all this, and he said: okay, I can understand you chose this way, but you have to continue getting on fluoxetine and stopping paroxetine.

 

I had talked about tapering strips in our first meeting, having read about them on the internet. He was not at all convinced such a thing should be necessary. But now I had tried to switch as he had proposed, and not succeeded, so now he did want to help me by ordering a tapering strip. For tapering paroxetine from 10 mg to zero in 28 days. I was to combine it with 20 mg fluoxetine daily.

 

Before it came and before I could start it, I had been taking fluoxetine and paroxetine combined (10 mg - 10 mg) for 20 days. Feeling not bad, really. I started the tapering strip on december 13th, now combining with 20 mg fluoxetine daily.  The last dose of paroxetine (0,5 mg) I took on January 9th. By end of december I started remembering all my dreams. Very consciously aware of them after REM sleep. Remembering everything I dreamt, every night. This did not seem bad. Initially I could handle it, I even thought it was interesting. My stool ceased to be in a turd. Came out shapeless, mushy. I rember producing a turd on the first of january and being relieved, since it had not been like that in weeks. But it has not been like that again.

 

A few weeks after the last dose of paroxetine, my nights became worse and worse and my agitation en tension even so. I had to stop attending my daytime activities, I am not well enough now to function and live a normal life. Mostly I am not able to sleep for more than 1 or 2 hours, before being wide awake again and not being able to sleep again for some time.

 

I thought it must be the fluoxetine that makes me incapable of sleeping properly. And causing agitation and tension in the daytime. And causing my stool to be without any shape. I told my psychiatrist and we considered that I go back on paroxetine. But maybe the dose of fluoxetine was just to high for me? We agreed that I would take half the dose for one week, and wait for symptoms to improve. They didn't, not for a bit. After these seven days I did not want to take fluoxetine anymore at all. Still believing it was the cause of the lack of sleep and all.

 

But now I have come to think they might be paroxetine withdrawal symptoms.

 

 

 

 

[Altostrata]

Welcome, @Clairest

 

How are you feeling now? How have your symptoms changed since you went off fluoxetine?

 

To help us out, follow these instructions Please put your drug and withdrawal history in your signature You may need to use a computer to do this.

[Clairest]

Thank you @Altostrata, for welcoming me.

 

I will put my drug and withdrawal history in my signature, as you request, but maybe not today, maybe tomorrow.

 

I wil answer your other two questions now.

 

10 hours ago, Altostrata said:

How are you feeling now? How have your symptoms changed since you went off fluoxetine?

 

At this moment I feel fine. Yesterday not so much. Tuesday was a very fine day.

 

Since I went off fluoxetine my symptoms initially did not change, but I had some changes now.

 

There was a change on sunday afternoon, but I contribute that to taking my first tablet of Saint John's Wort.

 

There also was a change for the nights from monday 'till now, and for the days since tuesday, but I don't contribute that to quitting taking fluoxetine, but to starting minidosing paroxetine on Monday. I crushed a 20 mg tablet and divided it into 15 doses, using my new medicine scale. First dose probably amounts to roundandabout 1.46 mg, today's dose to 1.34 mg. I have one dose left that contains probably 1.30 mg and 10 doses containing (roundandabout) 1.21 mg paroxetine.

 

So far nothing negative has happened and some positive change has happened, which could be placebo of course, but I have no way of telling whether it is placebo (yet) and as for now I plan taking those minidoses daily, and probably crushing another tablet and dividing it into even smaller doses after that.

 

[Altostrata]

I am confused. You are taking St. John's Wort, and you reinstated paroxetine on Monday?

 

If I were you, I would not take the two drugs together.

 

Yes, if you have paroxetine withdrawal, taking a little paroxetine probably will lessen it. If I were you, I would be very consistent in dosing paroxetine over some months. However, you'll still have to taper paroxetine eventually.

[Clairest]

8 hours ago, Altostrata said:

I am confused. You are taking St. John's Wort, and you reinstated paroxetine on Monday?

 

If I were you, I would not take the two drugs together.

 

Yes, if you have paroxetine withdrawal, taking a little paroxetine probably will lessen it. If I were you, I would be very consistent in dosing paroxetine over some months. However, you'll still have to taper paroxetine eventually.

 

 

I can understand that you are confused now.

Because... my psychiatrist and I, we were trying different strategies, in the last 4 months.

Adding to that: during the last five days I carried out new different strategies again, to which I decided independently.  I decided for two new strategies within a very short time (on Sunday and Monday). I am carrying out these strategies simultaneously now. So yes, I can understand your confusion. This summary (maybe) provides an overview:

 

• I decided to quit fluoxetine (after seven days of taking only 10 mg which was half the dose of the 20 mg I took during 61 days prior.  This was on February 19th, last Friday.
• I decided to start taking Saint John's Wort once a day. This was on Sunday, February 21th, been taking it for five days now.
• I decided to "reinstate" (didn't know the word yet on that day, but yes, I did) very small daily doses of paroxetine on Monday, February 22th . Last dose of paroxetine from the tapering strip was on January 9th. Last six doses of the tapering strip were 0,5 mg.

I can understand you would not choose to do all these things together, but I haven't your long experience in this field and your vast knowledge.

I am educating myself every day now, because of my crisis.
You are a very different person, probably without an autism spectrum disorder combined with dysthymia since age 14.

And you did not just very recently end up in this crisis situation of suffering very serious sleep deprivation for 4-5 weeks in a row, not being able to function in my (normal) life anymore.

You say: 'if I were you'.... but the thing is: you are not me. Of course I would have chosen differently from the start (in november), if I had had your experience and knowledge. I have to find out for myself and act within my personal circumstances.

 

I do not claim that at this moment I can know (for sure) that this combined self-treatment I am carrying out now, is the best way!
But I have been trying to do the very best things for myself. To the best of my own ability. Implying every new-gotten insight directly.
And I HAVE been getting better in the last five days! From Sunday untill now.

So I am continuing this combined treatment for now. My priority was/is getting out of the crisis of suffering very serious sleep deprivation for 4-5 weeks in a row, not being able to function in my (normal) life anymore. My strategy seems to work for now.

 

I am very glad I found this forum, because it helps me to educate myself and it is very nice to have a place to tell other people who KNOW, about my situation and all. I do thank you, Altostrata, for offering me this, and I do thank you for your attention and your attempt to consider my situation.

[Clairest]

I am not telling you EVERYTHING because everything is a lot, right now. I am not telling about every night and every day now, because it is too much. You are welcome to ask me about details, though.

[Clairest]

10 hours ago, Altostrata said:

If I were you, I would be very consistent in dosing paroxetine over some months. However, you'll still have to taper paroxetine eventually.

 

I understand the advise, and you are probably right. I was not thinking of several months yet, because I'd rather be done with it within a month, but...... I may get used to the idea. You have to understand I am still learning and it takes time to get used to the idea of taking so much time.

 

Yes. Very consistent. I understand the advise. I told you about the doses I created out of one tablet of paroxetine last Monday. I am taking those now. I intend to take all of them as long as taking them seems to work. They do seem to work now.

 

I had ordered the scale on Thursday last week. To be able to taper my fluoxetine, to be honest. Not for reinstating mini-doses of paroxetine, that was not my intention.

 

This weekend, and monday, I had been studying documents and reports by the people in the Netherlands who commit themselves to providing tapering possibilities. (That's how I got to google paxilprogress, that is how I found Surviving Anti-depresssants). The tapering strip I used for tapering paroxetine (10 mg to zero in 28 days) has come from the Regenboog Apotheek in The Netherlands. I knew that they offer medication for staying on 0.5 mg for some time because this helps (some) people, or tapering from 0.5 mg to 0.1 mg because this helps (some) people, or even staying on 0.1 for some time. Because people are helped with that.

 

So I was considering the possibility of reinstating this way on monday morning, but I dreaded asking my psychiatrist to prescribe this, I cannot order it without prescription, and I do have to pay for it myself....

 

That is how I got to try myself, on Monday. The scale only cost me 23 euros on Dutch Amazon. Making 15 doses is what I succeeded in. 10 consistent doses weighing 0.015 gram on the scale, amounting to 1,2 mg paroxetine, and five doses a little larger, I told you. I've taken the larger doses first.

 

 I do intend to try for 20 consistent doses out of one tablet next time. Now that I got the hang of it, I might succeed at that.

 

12 tablets of 20 mg remain at my disposal.

[Clairest]

https://www.amazon.nl/Hoosiwee-zakweegschaal-goudweegschaal-tarra-functie-kalibratiegewichten/dp/B07F7ZPW6L?pd_rd_w=5FNas&pf_rd_p=239c5613-ab4c-4afe-97e9-5be9774e5f02&pf_rd_r=FZB4A7KHSBJMWB2VJ3TN&pd_rd_r=b0dc4536-9d63-4102-9e37-fa998a16030b&pd_rd_wg=9Dml0&pd_rd_i=B07F7ZPW6L&psc=1&ref_=pd_bap_d_rp_1_i

[Clairest]

I keep on thinking about what you said, Altostrata: "I would not take the two drugs together." I want to explain this choice to you, make you see my logic.

 

My point is: I do not belief (yet) that I can do without a (S)SRI drug. My aim, from the start, is to replace paroxetine with another (S)SRI drug. I tried replacing it with fluoxetine, but stranded. I think the risk of being without any drug with this mechanism is too high for me. I really belief I do need one. I have a good experience with Saint John's Wort. I stranded with fluoxetine, so I try Saint John's Wort now. That's the logic.

 

It was only last Monday morning, after stopping fluoxetine and starting Saint John's Wort, that I realised (thought I finally got it): the bad sleeping is no adverse reaction to fluoxetine but is a withdrawal symptom of quitting paroxetine.

 

Last dose of 0.5 mg of paroxetine was on January 9th. My bad sleeping became impossible a few weeks later. In hindsight I don't think quitting fluoxetine was the right choice, but I did it, and when I spoke over the telephone to my psychiatrist on Monday, he wanted me to stay off fluoxetine. And when I told him I wanted to start Saint John's Wort instead (I already did, didn't say that) he said he would not recommend that. He said he did recommend me to start paroxetine again at 10 mg, and later 20 mg.

 

But he would allow me to try Saint John's Wort, he said, because he knew if I had not tried it, I would not be satisfied with being on paroxetine again.

And yes: he also told me: do not take the two drugs together. But he does not believe in taking these small doses anyway. Not in tapering and not to lessen withdrawal symptoms, he does not belief it can do anyting. I see no point in telling him about it, he would be so sceptical and bothered. I want to try this out myself. But it's not like I'm taking 10 mg together with Saint John's Wort, I would never do that.

It's just these very small doses of paroxetine I am taking now. So yes, since Sunday/Monday I am taking Saint John's Wort together with low doses of paroxetine. My sleep is getting better now. Day time is also better. Still I cannot know whether I am doing the right things for me, but I am trying.

[Clairest]

My stool shows new shape(s) every morning. It is steadily improving!

A very concrete, reassuring thing. "I must be on the right track now."

A solid sign...

 

[Clairest]

I have been a little bit worse in the last few days. Sleep, daytime and stool. Shape of stool decreasing on sunday-monday-today. Rather mushy again this morning. The stool is the most convincing sign, signalling how I am doing.

 

I think I can notice the decrease of paroxetin in the doses I took, since reinstating. They were:

 

Monday 22nd                 pillweight 0.018 g.   paroxetine 1.46 mg

Tuesday 23rd                 pillweight 0.018 g.   paroxetine 1.46 mg

Wednesdat 24th            pillweight 0.017 g.   paroxetine 1.38 mg

Thursday 25th               pillweight 0.0165 g.  paroxetine 1.34 mg

Friday 26th                     pillweight 0.016 g.   paroxetine 1.30 mg

Saturday 27th                 pillweight 0.015 g.   paroxetine 1.21 mg

Sunday 28th                   pillweight 0.015 g.   paroxetine 1.21 mg

Monday 1st of March     pillweight 0.015 g.   paroxetine 1.21 mg

 

I am not sure what to do now. I would like to take Friday's dose again. Pillweight of 0.016 grams. And keep taking that for some time. But the doses I have left, in store, of my first tablet-dividing-attempt are: 7 doses of 0.015 grams pillweight.

 

I think I will take the 0.015 grams now, and maybe divide another tablet this afternoon. In doses of 0.016 grams. I must not attempt to carry out this precise task at this moment, not feeling right (yet) from the night (will get a little better), and being under time-pressure. I think taking the dose on time now, and saving the precise work for a better moment, is the best choice for now...

[DutchMaddy]

Dag Claire. Wat vreselijk jammer dat de psychiater je zo snel liet taperen met de paroxetine. 1 maand. Dat had beter 10% per maand kunnen zijn. Ik wens je veel sterkte met alles!!

 

[Clairest]

7 minutes ago, DutchMaddy said:

Dag Claire. Wat vreselijk jammer dat de psychiater je zo snel liet taperen met de paroxetine. 1 maand. Dat had beter 10% per maand kunnen zijn. Ik wens je veel sterkte met alles!!

 

Hoi Maddy. Welkom in mijn topic. Ik ben ook even jou introductietopic aan het kijken enzo.... Dat is van 25 oktober en ook alleen van die dag. In je signature staat "AD free since 29 July 2020". Hoe gaat het nu met jou dan?

 

Of... mogen we wel in het Nederlands schrijven op dit deel van het forum? Misschien beter niet. Ik weet het niet. En misschien kunnen we beter over jou praten in jouw topic? Ik ga daar schrijven. In het Engels.

[DutchMaddy]

I can answer you in English. I am doing better. More windows. Not using anything. No supplements no benzo’s or sleeping pills.  Now 7 months off. 
Take care!

[Clairest]

Thanks, Maddy! I copied your answer to your own topic and reacted there, I hope that's okay. Was still editing my post. Can still edit it now.

[Clairest]

Still getting worse. I did not updose the reinstatement. Still taking the 1.2 mg paroxetine. Slept only three hours this night.

[DutchMaddy]

Oh that is terrible. Just hold steady en keep on breathing 😏. Take care!!

[Clairest]

This morning I will take the last dose of 1.2 mg paroxetine that I prepared. I will need to divide another tablet of 20 mg today.

 

@Altostrata
Would you, moderators and members, please advise me on what doses to prepare next?

Should I stay on 1.21 mg or should I updose?

[Clairest]

I will not decrease in dosage, because I really do not feel well enough to be able to get worse.

I do have learned a lesson now - it would have been better not to have my doses decrease during the first six days of reinstatement. Like they did. I thought I could try but no: not good.

 

My sleeping has not become better, it is still only 3, 4, 5 hours a night, lots of waking time in between.

I do feel less agitated and jittery and all than before the reinstatement. Still not undertaking any outdoor activities at all, no working, nothing. Not up to it. These were the doses of the reinstatement I took:

 

Monday 22nd                 pillweight 0.018 g.   paroxetine 1.46 mg

Tuesday 23rd                 pillweight 0.018 g.   paroxetine 1.46 mg

Wednesdat 24th            pillweight 0.017 g.   paroxetine 1.38 mg

Thursday 25th               pillweight 0.0165 g.  paroxetine 1.34 mg

Friday 26th                     pillweight 0.016 g.   paroxetine 1.30 mg

Saturday 27th                 pillweight 0.015 g.   paroxetine 1.21 mg

Sunday 28th                   pillweight 0.015 g.   paroxetine 1.21 mg

Monday 1st of March     pillweight 0.015 g.   paroxetine 1.21 mg

Tuesday 2nd                   pillweight 0.015 g.   paroxetine 1.21 mg

Wedneday 3rd                pillweight 0.015 g.   paroxetine 1.21 mg

Thursday 4th                  pillweight 0.015 g.   paroxetine 1.21 mg

Friday 5ht                       pillweight 0.015 g.   paroxetine 1.21 mg

Saturday 6th                  pillweight 0.015 g.   paroxetine 1.21 mg

Sunday 7th                    pillweight 0.015 g.   paroxetine 1.21 mg

Monday 8th                   pillweight 0.015 g.   paroxetine 1.21 mg

[Clairest]

Very glad to have completed the very precise task of dividing another tablet of paroxetine in 15 doses weighing 0.015 grams. This pill weighed 249 mg, as opposed to the prior one weighing 247 mg. So 0.015 gram pillweight would amount to 1.20 mg of paroxetine this time and not 1.21 mg. I had to throw away some superfluous powder this time. I did so.

 

I did the task this morning. Yesterday I could not do it, yesterday I was in a too bad condition, physically and mentally. Also I was waiting (hoping) to maybe receive Altostrata's or someone else's advise on my question yesterday. If someone knowledgeable on this forum would have advised to updose, I would have.

 

This is because I am longing to get to feel and sleep a little better so much... It was a temptation to updose. But thrown back on my own, well, I did choose the conservative and sensible option, to try to stabilize more, longer, on the same dose. I also withstood the temptation of stopping the reinstatement completely... to see what happens.... Not this time. Maybe I will consider that again when I do get to feel/sleep a lot better.

 

Today I will receive a magnesium supplement I ordered. So I do have a chance to try something new and see if my symptoms improve. I ordered https://www.goldennaturals.nl/magnesium-bisglycinaat-300-mg-60-veganistische-tabletten

[Clairest]

I just broke down. After another night of not getting more sleep than just three seperate hours.

I cannot endure this kind of life anymore.

I just took 20 mg paroxetine again. I gave in to it.

 

It is not a decision I thought through, but I cannot endure this life anymore. With this little sleep. And no way of knowing how long it will take.

 

I also know I should have taken 10 mg and not 20. But I could not control myself.

[Crochet]

Hi Clairest,

 

I understand your desperation and I'm sorry that you are in such a dark place.  Let's wait and see what a moderator says, but know that you are not alone.

 

Take care,

Crochet

[Altostrata]

How do you feel, having taking 20mg paroxetine?

 

Paroxetine is a particularly difficult drug to go off.

 

On 2/26/2021 at 5:12 AM, Clairest said:

My point is: I do not belief (yet) that I can do without a (S)SRI drug. My aim, from the start, is to replace paroxetine with another (S)SRI drug. I tried replacing it with fluoxetine, but stranded. I think the risk of being without any drug with this mechanism is too high for me. I really belief I do need one. I have a good experience with Saint John's Wort. I stranded with fluoxetine, so I try Saint John's Wort now. That's the logic.

 

Claire, I will be honest. This is a site for going off psychiatric drugs. We don't help people switch from drug to drug in order to stay on an antidepressant, that's what your doctor gets paid for.

 

We cannot advise you about what drugs to take to continue your antidepressant treatment.