Vonnegutjunky: Paxil 10 mg for 8 years - partial wean with reinstatement

[Gibby]

Everybody is different when it comes to how windows and waves work. You might feel that the waves are worse because you are comparing them to the awesome windows.

 

Are the windows getting longer? That would be a good sign. 

[Vonnegutjunky]

No I don't think I have - sometimes I have very bizarre imagination and it feels like it's happening to me - I don't know if it's anxiety or insanity - it's very upsetting to me tho

[Vonnegutjunky]

No they are not linger but they are much much much better quality - I considered that too that many be in comparison they just feel worse

[Petunia]

My thinking has gone way beyond reality during the worst of withdrawal, but thoughts are still only thoughts, they don't have to be believed.

 

If you are here, asking this question, wondering about your own sanity, then you are not psychotic. Someone in psychosis doesn't question what they are thinking or their version of reality. They are basically in a different reality from consensus reality, but don't realize it. If you recognize that your thinking is a little unusual, then you're not psychotic.

 

A bizarre imagination is not psychosis if you recognize it as your imagination, which you obviously do.

[Altostrata]

VJ, if you've never had a psychotic symptom, even after your too-fast exit from antidepressants before, it's unlikely you will have one now. You are not even tapering.

 

Do you tend to have health anxiety?

[Gibby]

Try to live in the moment during the windows and think to the future during the waves. Eventually you will get better and be ready for the next step!

[Vonnegutjunky]

I have horrible health anxiety, I have had anxiety attacks since I was 3 years old- I have an amazing therapist who consistently gives me coping skips and does emdr with me, but it some times does not help at all-

I have recently went from 16.5 down to 16 - I need to update my signature - but I feel better knowing I'm not psychotic- just my worst fear during waves

[Vonnegutjunky]

Thank you gibby ❤️

[Altostrata]

My intuition is that you fear losing control. With your therapist, you might move away from the more event-based CBT-type techniques and do a little more exploration of why you have this fear.

[Vonnegutjunky]

Probably right - your not the first person to suggest this

[Altostrata]

Merged the psychosis discussion.

[Vonnegutjunky]

I'm still the the midst of a horrible wave that really hit me last Wednesday- it was the worst that I have had in 7 weeks - left me bed ridden for days

 

They are always the same

Ringing ears

Burning mouth

Double vision

Waves of nervous/ rollercoaster type anxiety in my stomach (makes me have to go potty)

Feelings of uneasiness/doom

Very sensitive and feeling like crying over every thing

Feel like I am unable to do anything -

Tons of fear just thinking about having to go and do things I used to enjoy -

 

I felt so good last week

 

I just hope and pray I feel good again soon

[Gibby]

You've had windows, you will again. Just take it easy during the wave and do what you need to do to stay safe and sane. 

 

So it goes, right?

[Vonnegutjunky]

Yes - lol so it goes - someone read slaughterhouse five?

[Jlynn]

I hope this passes and you get a very long window soon!

[Vonnegutjunky]

Well this is my first night down to 15mg - I am so nervous - I am worried I am going to get worse

I will hold this one for a little longer than a month -

 

Have not had a good window yet- symptoms have let up a bit but the tinnitus, burning mouth and double vision are horrible - I even went to the er tonight to see if they had any answers for my symptoms - they checked my thyroid and sent me home and told me to go see a neurologist-

 

Well I hope this cut provides relief and that they are just side effects from the med - other than that mentally I am doing pretty good -

Xo

[Vonnegutjunky]

Well did my cut last night and started on 4000 iu of vitamin d - and today my burning mouth, tinnitus, and blurry vision are almost gone-

 

Don't know if it's the Paxil or the lack of vitamin d (I have been tested before and have had dangerously low vitamin d)

 

Either way I felt so good today!!! So much more clear headed - and this out me in a really good mood- some anxiety but nothing I couldn't handle!

 

I will stay at 15 for awhile a see what happens

[apace41]

Good to hear, VJ.  Very good to hear.

 

Best,

 

Andy

[Vonnegutjunky]

Thanks Andy ❤️

[Vonnegutjunky]

*Topic moved from symptoms forum

 

So I had always had difficult to explain how I feel during waves, and after reading this dr shipko has difficulty defining it too and states it's like akathisia but not necessarily with the traditional pacing and constant movements

I want to sleep when I feel like this, but when I am awake I feel better twitching and moving my hands very quickly- I don't necessarily get an urge to do this like I get with my rls (which I have had since I was pregnant) so it's not an urge per se, but it definitely helps the inner anxiety I feel....

Anyway I really related to this article in terms of helping describe my symptoms - hopefully it may help others too

This is a very interesting read

Shooting the Odds, Part III

By STUART SHIPKO, MD

Featured Blogs September 1, 2015
Stuart Shipko, MD
Facebook Twitter LinkedIn Email Print 16 Comments890 Views
My prior MIA blog posts have largely addressed the problems that can occur when people try to stop taking serotonin-related antidepressants, particularly after taking them for a long period of time. I wanted to share a few updated thoughts that I have on the problem.

Protracted withdrawal needs a better name. The term “protracted withdrawal” does describe the time sequence of symptoms after stopping serotonin based antidepressants, but is a poor choice of language when discussing this with your doctor. Medicine does not recognize such a thing as protracted withdrawal. Withdrawal is considered something that goes away within days or weeks of stopping a drug. If you are going to talk to your doctor about these sorts of problems, then it is best to describe the problem as symptoms that happened after stopping the drugs. I realize that many physicians will declare these new symptoms the start of a new mental illness – usually bipolar – but calling it protracted withdrawal just confuses the doctor. Although I refer to protracted withdrawal as drug neurotoxicity, it is still a bad idea to give the doctor a diagnosis rather than to present symptoms. It’s just the way that doctors work. They want to make the diagnosis and often feel put off by patients who present with a complaint and a diagnosis.

On the other hand, doctors are increasingly influenced by information from the Internet which is told to them by patients. They generally do not want to see a lot of printed off pages, as there is no time to really read them during the office visit. Even with a good attitude and linguistic strategy, going back to the prescribing doctor is often futile. When confronted with a patient who has any sort of emotional problem – even if it is a side effect of drugs - the doctors tend to pull out a prescription pad and want to try one drug after the next in hope of being helpful.

The consequences of reinstating the same drug or starting similar drugs are highly variable. Sometimes the patient returns to a comfortable baseline and sometimes they get incrementally worse with each new drug. Even when reinstatement results in resolution of symptoms, it is unavoidable for the patient to be thinking about how uncomfortable it is to be taking a drug that created the problem in the first place. Obviously whatever damage the drug did before is going to be increased over time. So what will the next 10 years do to the nervous system?

Problems related to stopping SSRIs after long term use are becoming more common in my practice. People on the SSRIs for years with no noticeable symptoms often decide that they don’t need the drug and decide to stop taking it. After all, they were told that the drug isn’t addicting, and were never warned that there could be problems stopping it.

Experiencing a fairly rapid and severe ‘akathisia’ like syndrome, usually a few months after the last dose is fairly common. I put the word akathisia in quotes because it’s really difficult to describe exactly what it is that happens and the full toxicity syndrome has not been formally described. Akathisia is probably the best term to describe what is going on, however, akathisia is primarily considered a movement disorder that comes with a subjective feeling of inner restlessness. Sometimes I do see the typical pacing and motor restlessness of akathisia, but not usually. Like akathisia, the discomfort is extreme and impairing. In fact, the SSRI toxicity related symptoms appear much more uncomfortable than even serious anxiety or depression unrelated to SSRIs. Some describe it as anxiety and some as depression, but typically it has a fairly abrupt onset and is worse than anything previously experienced. The patients seem to be unable to describe it except to say that it is extremely uncomfortable – crawling out of my skin. My suspicion is that patients are reluctant to talk about how they feel because they are having suicidal thoughts and fear the possibility of involuntary hospitalization. Akathisia is probably the best term currently in use to describe the syndrome of late onset and persistent withdrawal symptoms, but these symptoms need to be better categorized, studied, and described.

The phenomenon of late emerging, intractable withdrawal related symptoms occurring after a period of months with no problems seems to be widely recognized by patients, but has never been studied and is unknown to physicians. Increasingly it is the tardive, or late onset withdrawal related problems that bring patients to my office.

Often patients are down on themselves because they believe that their problems relate to having tapered too rapidly. It seems like a lot of the same problems occur in people who stop slowly and those who stop abruptly. That having been said, I have been doing some ultra slow tapering. In my last blog I wrote about a man stopping Effexor after a 14 year exposure. We tapered from 150 mg to 0 mg from 2012 until early 2015. This patient never had any acute withdrawal symptoms, no symptoms after stopping the last dose and no late onset symptoms 7 months after the last dose.

Since there are so few tools to use for people who want to stop the serotonin related antidepressants, ultra slow tapering might be useful. By ultra slow, I mean tapering at a rate so slow that there are no discernible symptoms at each dosage cut. For example, I have a patient who has been on 40 mg of Paxil for 15 years, and we started by cutting down by 1 mg a month. In this sort of tapering, if there are any withdrawal symptoms on the dosage cuts, we go back to the last comfortable dose, and stabilize before making another cut – which might be a lower dose cut. It will be years before I know if this is useful or not, but in the meanwhile, my patients are working and living a normal life while tapering instead of suffering and being disabled, as is so often the case.

Patients who are having toxic withdrawal related symptoms almost always want to know how long it will last. There is no good answer for this question, but the time frame is going to be in the realm of months and years and not days or weeks. This is an important issue for the person who is highly debilitated by symptoms. If a person is disabled and unable to function at work or to socialize, then it is probably not a great idea to wait indefinitely for it to go away. Reinstatement of the drug, or use of a benzodiazepine – while not ideal, may be worth the risks.

I note that a lot of people are seeking the “antidote” for the withdrawal related symptoms. Reinstatement and benzodiazepines can help with symptoms, but do not reverse the process. As it stands there is no antidote, and absent an understanding of the pathology involved, this is unlikely. Perhaps one day the problem will be studied and understood in such a way that an antidote can be found that will take away all of the withdrawal related problems.

In the meantime, I want to emphasize that rehabilitative related treatment is useful in improving symptoms. Recently I saw a person who had to drop out of college for the semester because they could not concentrate enough to do the computer programming needed for classes. As a rehabilitation strategy, the person was encouraged to do some similar type of programming every day. It was a slow start, but it looks like this person will resume school next month. Staying in bed and resting in hope that the problem will go away may not be as good as forcing oneself to engage in exercise, socialization, proper diet, meditation, spiritual activities and work like activities.

Edited December 31, 2015 by Petunia
added note

[AprilShowers]

Very interesting Vonnegutjunky. If only humans came with a system restore or a reset program button for our neurotransmitters eh! I wish! 

[Altostrata]

Good to see that Dr. Shipko is coming around to what I've been telling him for years.

[indigo]

My thought too Altostrata. 

[Altostrata]

[Vonnegutjunky]

Well I am just checking in - still in a good window (they always happen after a cut

 

My issue when I am in a window is waiting for that wave to start up

 

Maybe I will be in a window longer as I am no longer working - I am not teaching next semester and I have told my client( the one that I had) that I am going on vacation - I also found an amazing therapist who does not take my insurance- it's so crappy as she's smart and is an expert in emdr - I would love to work with her but I can't right now- so I'll go back to my old one who I don't really click with -

 

Hope everyone is doing well getting ready for Christmas or Hanukah or winter solstice ❤️????✨☃

[Vonnegutjunky]

So like clockwork my symptoms of a wave are starting up again!

Every 12 days?? This is peculiar to me

 

Could this be something else ?

 

Maybe my cns is healing in a specific pattern of every 2 weeks? I don't know, it's weird but I'm less scared as I know they do come and go

 

Hope every one is enjoying the holidays ❤️

[Vonnegutjunky]

*topic moved from symptoms forum

 

Some relevant history -
I suffer from severe cervical spine arthritis, 2 of my discs in my neck are degenerated to the point that I have constant pain that runs the length of both my arms - this as been like this for 15+ years

So one thing that has really perplexed me is that after I reinstated my Paxil, all of my arthritis pain in my neck and arms completely went away (my reinstatement had failed and I was having an adverse reaction to the med)

From a neurological perspective, does anyone have any theories as to why I would stop feeling that pain?
It was strange because during this time I could feel physical pain on my skin, like if I cut my self or if I had an itch-

Since I have been tapering I am feeling much better, no longer feeling so weird, and my pain is coming back- which I don't mind now, because I know it's a sign that things are getting back to normal

I am just so curious as to why this would happen-
I theorized that maybe it had something to do with the way I was metabolizing the reinstatement, I would think that if it was cns related I would have felt more pain? I know nothing about the cns -

Any thoughts would be helpful, mainly because im Still trying to piece together and process what exactly happened to me due to the reinstatement so I can move on - for some reason knowledge has always been my coping mechanism when negative things happen to me -

Edited January 11, 2016 by Petunia
added note

[Vonnegutjunky]

Well I had a decent week - 7/10 then today I hit a wave and the akathisia really started setting in- I felt the restlessness from my waist down - this is new - as neorealism the akathisia was 90% emotional and cognitive, now it's also manifesting physically - I wonder am I having akathisia from the taper and as a side effect of the Meds? Double whammy if it is

 

It leaves me feeling incapacitated -

 

I read on a blog about a lady who began exercising anyway

 

And diet changes - no sugar or carbs can help along with vitamin c

 

I am going to cut out sugar first and see what happens -

 

love and hugs to all of us suffering xo

[LostInSpace]

Hello - Exercising will definitely help.  I do it most days, it's the only time I get a sense of well being... after a workout.  The natural rush of endorphins is fantastic.  But I can almost guarantee you no carbs is going to be a big mistake.  The healthiest people get quite sick after reducing carbs.  Cutting them out completely will have you thinking you're going through withdrawal for the first time all over again.  I was cycling carbs, some part of the week I would have high carbs, the other low.  Just that mild swing in carbs intake had me quite nuts... cutting them out all together will having you feel more phsyco than ever:

 

http://paleoleap.com/low-carb-flu/ 

[Vonnegutjunky]

Thanks lost - I will take your advice to not rapidly change my diet

 

Yesterday and the day before the burning mouth started again - I looked up and found in meritts neurology that this is a common symptom that goes unrecognized and they call it focal akathisia, or cognitive akathisia, related to rls,

 

Anyway it's only been a little over 3 weeks since my last cut but I went down again and low and behold the mouth burning, ear ringing and blurry vision, and inner agitation are almost gone again- so I know the Paxil is creating mild akathisia as a side effect -

 

I don't want the akathisia to get worse as I feel it has been staring to- especially from the waist down and I have been experiencing some involuntary jerks, only one or two, nevertheless, I don't want this to end up as something permanent - also after each cut the jerks and stuff competely disappear

 

initally the akathisia would stay gone for about two weeks then comeback but after my cut on the 12th of December it stayed at bay for just over 3 weeks - which was really nice - when I'm not experiencing it I can cook and clean and be productive around the house

 

I hope this continues and I have months of feeling ok as I get to lower doses

 

However as I get to lower diesels the dp/dr and pretty wicked anxiety is setting in- I will get magnesium today and see if it actually helps

[Vonnegutjunky]

Dropped another mg tonight -

Don't know why but I get so incredibly nervous -

I guess I'm eating for the drops to backfire on me - as I drop I feel better and better - more clarity, feel more like myself, more normal -

 

I felt like myself during my first withdrawal- i just got really bad waves and thought I was going crazy - after my updose I no longer left like a bad version of myself - I felt weird, bizarre, odd- I think I was on too high of a dose -

 

Anyway - wish me luck!

[nick1990]

Thats the way ! Its so good that your feeling better after your drops Best of luck

[Vonnegutjunky]

Man I should edit the above post

 

Thanks nick -

 

I decided at the last minute to go down .5 instead of a whole mg - just gut instinct I guess - I feel better and better after each drop but I don't want to go too fast and have a horrible crescendo effect that I won't be able to recover from -

 

I know I can't rush it as badly as I want to just come off quicker as I do feel better and better, I just need to stay as slow and calm as I can - but I had a few Windows today and they were glorious - I felt like a normal person with no worries! I relaxed - I had a good grasp of time and what day it was and what I did last week- I hasn't has that kind of brain organization in over a year - so it really helped a lot knowing my brain so trying to stabilize

[Rachel1963]

Hi VJ: I'm having a wave today waiting to stabilise after six weeks at the same dose and getting there is feeling very pokey so I read your entire thread and you are an inspiration and so courageous, I only hope I have your courage when it's time for my taper. I saw a post you made on the reinstatement thread. I intend to wait a few more months to stabilise but if I don't I will also start tapering although I am now starting to have Windows so I think patience is the order of the day and the foggy head is starting to clear a bit too.

 

You mention in your thread that updosing was what caused the issues with you. Do you think if you had waited longer you would have stabilised at the 10 mg dose? Or do you think it was the antibiotics or the different make of generic? This is so new and awful to me. I am off work now and feel very vulnerable and frightened with all this. I am so grateful for this site and the people who are encouraging me. I'm like you in that I'm missing out on my life. I had just been accepted for my masters in counselling.

 

I hope that you get more and more Windows as you go. ????

[Vonnegutjunky]

Thank you for your reply Rachel, it means more than you know- I guess I hope my struggle can be a saving grace for someone, you know I don't think anyone wants to think their strife is all in vain

 

I do think had I reinstated on my original medication at 10mg and waited I would have stabilized for sure - I think the effects of the different generic and the antibiotic created a perfect storm and threw me into a horrible wd, one that I had a difficult time trying to get out of

However

 

I also think Because I was so afraid and didn't know what was happening to me I updosed too quickly out of fear ( and because i listened yo my doc)

 

And in relation to the bad reaction to the dose increase I believe that My metabolism has changed from the medication and that caused the negative reaction

 

I read about cognitive akathisia in Merritt's neurology, one of the symptoms of the akathisia (aside from psychological horror) is burning mouth, which I have, badly, but it goes away during Windows - this cognitive akathisia, is akathisia without so much of the movement issues - I believe this is the my negative reaction- I felt so strange and bizarre I could not describe it, I still can't - but I think that's the answer to the negative reaction( it's really bothered me that it happened)

 

Today I am in a window - a really really good one, in the sense that I feel like me, I am depressed, but I feel more and more like me with each dose decrease and time - and I love this window, I've been in one for almost 3 days now- it's really nice.

 

I am not a fool though, I know I will be back next week with a wave, but for now I am happy that I feel some sense of normal, so I know I am on the road to some sense of normalcy, that makes me grateful-

 

 

I know you will stabilize Rachel - just don't act like me and make jump decisions, and please do listen to people on this site, they really do know.

 

and my rule of thumb?

Its better to feel like **** off the medication than like **** on the medication. ❤️❤️❤️❤️

[Rachel1963]

I'm having more Windows now too VJ and I'm so glad you are enjoying this one! And I know your story will inspire many others...it's so courageous! I was jumping around a bit too because I was so frightened but I won't be anymore. My nurse practitioner is completely supportive of me and I told her what a positive website this is. My husband supports my decision to stay at this dose as well and to practice patience. I look forward to one day being off this medication again too. A little bit after you. I will keep following you to enjoy your success with you and your getting back to normal. Thank you so much for your message to me ????????