snostorm: long term Paxil user - making another attempt

[snostorm]

Would flu achy feelings. Be a withdrawal symptom or reinstatement symptom?

[scallywag]

They can be a withdrawal symptom. You might find it handy to download a file of Dr. Joseph Glenmullen’s withdrawal symptom list.

[snostorm]

They can be a withdrawal symptom. You might find it handy to download a file of Dr. Joseph Glenmullen’s withdrawal symptom list.

 

...oh yes I do know they are a withdrawal symptom.  Having updosed and having them today I was wondering if this is still withdrawal or sensitivity to my updosing.

[snostorm]

Saw psych Says stay on 5mg and prescribed low dose buspar to help stabilize? Is this bad idea?

[ChessieCat]

Have you tried magnesium?  I have found that taking Magnesium helps to take the edge off my anxiety.  I missed a couple days recently and was wondering why I was feeling on edge.  A few hours after taking it I felt more settled.

 

Please see this post for graph

 

This graph shows your dose changes.  It has only been 2 weeks since you updosed.  If it were me, I would be not be taking any additional drug.  Taking another drug will muddy the waters and you will not be able to work out what is causing what (withdrawal from your Paxil or start up/side effects from the Buspar).  If your withdrawal symptoms get to an unbearable stage, I think a better option would be to make a very small increase in the Paxil dosage.

Edited March 26, 2017 by ChessieCat

[snostorm]

Wow thank you for your efforts. Much appreciated

[snostorm]

I wanted to share my experience with the Psychiatrist visit I had yesterday.  Old timer.  pretty useless when I think about it.  On the positive side he didn't recommend I updose further on my Paxil.  Stay at 5mg.  He said at this dose I should be able to jump off as its very low.  I know better. Said they dont prescribe Paxil and prozac anymore there are better medications with less side effects they use.  Told me I dont need them, that i need to work on my anxiety through therapy.  Said man up and address it.  He prescribed buspar to help with my anxiety and when I stabalize I can start tapering Paxil if I like.  

 

I am not in favor of any more medication.  I am better not stable though.  I will give it more time. I have not been having panic attacks just the ever present edge of anxiety.  Sleeping a bit better. I will try some supplementation with magnesium.  Maybe low dose fish oil.  I realized B complex is BAD for me.  My life is very stressful going through life changes.  A horrific divorce that has been going on for 4+ years. I have get DP in waves.  I hate that the most I think.  It drives me insane.  It is this symptom that drives me to want to go back on my full dose of Paxil.  Or updose back to 10 mg in the hopes I gain my sanity.  Im trying to be as strong as I can.

 

I know its different for everyone.  My fear is that this never goes away. That life long Paxil use is the only way I can get back to being somewhat normal.  

 

I hate that I am here.  But grateful for the support.

[ChessieCat]

"He said at this dose I should be able to jump off as its very low.  I know better."

 

Yes, you do!!!

 

"I am not in favor of any more medication."

 

Because you know better!!!

 

"get DP in waves.  I hate that the most I think."

 

I don't think it is so much that we hate a particular symptom, it is more that we have a symptom over a period of time and we get fed up with it because it lasts or keeps coming back.

[nz11]

Very impressed with your graphing skills cc. What a wonderful way to highlight taper smoothness or nonsmoothness.

 

Snostorm it really is a waste of time talking to these legalised drug dealers called psychiatrists.

"man up and address it" is a completely unacceptable thing to tell someone in ssri wdl it reveals a disgusting level of ignorance.

[snostorm]

Very impressed with your graphing skills cc. What a wonderful way to highlight taper smoothness or nonsmoothness.

 

Snostorm it really is a waste of time talking to these legalised drug dealers called psychiatrists.

"man up and address it" is a completely unacceptable thing to tell someone in ssri wdl it reveals a disgusting level of ignorance.

 

The more I think of it the more I get disgusted. I was sitting in the waiting room waiting To see him in ssri withdrawal. These two drug reps came in and wanted to see the doctor before he saw me. They were trintellex reps i think. I wanted to waste them both and shove their samples down their throats. I was in a bad place.

 

My pattern is pretty predictable. Feel jittery in the morning. As the day wears on my symptoms increase. Anxiety, agitation, depersonalization, visual distortion, fatigue, feels like low,blood sugar. I don't know if the 5 mg I take in the am s causing this or I need more to stabilize. I feel better in the evenings. Waves during the day windows in the evening. It's like clockwork. Makes me wonder if the 5 mg I'm taking is tweaking me during the day and it wears off in the evening..? Or do I need more to stabilize. It's pretty much been this pattern since I updosed 2 weeks ago.

[scallywag]

We may be able to give you some feedback if we see your symptom pattern. Please keep notes on paper of your symptoms and the times of your dose(s). This post has a useful format for a daily log:

Take notes of doses and symptoms.

 

When you've got notes for a few days, please post them here.

[snostorm]

Ok I have taken some notes as advised

February 20


Took Paxil 5mg 800 am
Feel ok upon awakening. Slightly jittery.

900 am took 5000 units vitamin d took 400 mg magnesium glycinate.

1130 am emotional. Low anxiety level. Slight visual symptoms. Slightly sensitive to sun light. Not much appetite.

130 pm mild symptoms. Low anxiety level. Sensitive to sun light.

300 pm increased anxiety and jitterines

430 pm anxiety steady slight DP DR

530 pm took 400 mg magnesium glycinate.

1130 pm. Sleepy. Slightly edgy

----------------

February 21

600 am woke broken sleep. Take 5 mg Paxil and Prevacid otc.

630 am feel slightly edgy. Vision improved overall feeling relatively better.

720 am slightly increased edginess.

830 am took 400 mg magnesium 5000 units vitamin D 1000 mg Vitamin C one Xymogen liver protect. Feeling steady slight edge

1030 am Feeling fatigued. Slight DR /DP

100 pm ate lunch mild DP/ DR

240 pm. Feel heavy. Like low blood sugar feel fatigued sinus symptoms. Headache DP/DR

430 pm. Took 400mg magnesium glycinate. Vision has improved. DP/DR decreased. Mild edginess

1030pm. Had some anxiety this evening. Self inflicted by obsessing over horror stories on the internet.

-------------------


February 22

630 am. 5 mg Paxil Prevacid OTC
feel restless in arms and legs. Some anxiety.

930 am 5000 units vitamin D. 400mg Magnesium glycinate. 1000mg vitamin C. One xymogen liver protect. Mild anxiety. Mild agitation and restlessness in my limbs.

1100am anxiety. Agitation. DP/DR increase.

200 pm. Anxiety DP/DR lessens Restless limbs continue. Slight headache.

300 PM sleepy

534 pm symptoms lesson. Low level anxiety. Low level RLS

1100 pm sleepy low level symptoms

-----------------------

February 23

630 am Took Paxil 5 mg and Prevacid OTC. Slight symptoms. Low anxiety edginess.

900 am slight increase in anxiety and agitation. Nasal symptoms. Took 400mg magnesium glycinate. 1000mg vitamin C 5000 units vitamin D one xymogen liver protect

12 noon. Low level anxiety edginess. Mild restless legs. Slight headache Overall better than yesterday so far.

200pm. Increased anxiety jitteriness. True to form.

430 pm took 400mg magnesium glucinate

500pm. Anxiety. Agitation

730pm continued anxiety. Feel edgy chills

900 pm. Anxiety brief panic attack while driving.

Trouble falling asleep

---------------------------

February 24

630 Paxil 5mg Prevacid OTC. Slight edginess.

830am anxiety

900 am. Took 400 mg magnesium glycinate 5000 units vitamin D 1000 mg vitamin C one xymogen liver protect still feeling anxious

I'm unsure what to do. It's very hard coping. I would do a total reinstatement at this point if I thought it would help. But don't want to throw flame on the fire. I work full time and it's hard to function. Is this withdrawal. Or sensitivity from updose. I'm not sure if it's relevant but in the past I have reinstated 20 mg straight from 7.5. On another failed taper.

[ChessieCat]

How often have you been taking the Prevacid OTC?  There is no mention of you taking it on the 20th.

 

Here is SA's topic:  that-acid-reflux-pill-may-be-causing-your-health-problems

[snostorm]

How often have you been taking the Prevacid OTC? There is no mention of you taking it on the 20th.

 

Here is SA's topic: that-acid-reflux-pill-may-be-causing-your-health-problems

I take it daily with my Paxil. Have for years. I just omitted it. Another med I will have to wean off I guess

[ChessieCat]

Could you please add it to your signature so we have the full drug history at a glance?  Thank you.

[scallywag]

I've had a look at your notes -- thanks for posting them. Nothing jumped out at me as a pattern or a possible fix. I think you're just in a not-so-great "withdrawal normal."

 

You can read more about "withdrawal normal" a term coined by another Paxil taper-er, brassmonkey, in his intro thread at this post.

[snostorm]

I've had a look at your notes -- thanks for posting them. Nothing jumped out at me as a pattern or a possible fix. I think you're just in a not-so-great "withdrawal normal."

 

You can read more about "withdrawal normal" a term coined by another Paxil taper-er, brassmonkey, in his intro thread at this post.

 

Thank you for looking at my notes.  I did read Brassmonkeys thread.  I am not close to stable where I think I would even consider dropping more at this point.  So I have a hard time classifying myself as "withdrawal Normal" I was of the thinking of obtaining stability holding then tapering properly. I have no illusions of it being easy.  But what I am experiencing is rather distressing. Maybe I have too much information and am scared to do anything at this point.  Which might be a good thing. Im inclined to do a slight up-dose to see if it helps. 

[ChessieCat]

Thank you for adding your PPI to your signature as I mentioned.

[snostorm]

What I find interesting is that I do not experience the zaps anymore.  They stopped a long time ago during my taper.  Not sure if its significant.  I am grateful, but I would rather have zaps than panic and gripping anxiety.  I also can sleep which I am very grateful for.  Not great but I do drift off.  

 

I have a question.  I am on 5mg tabs.  I break 10 mg tabs in half.  On careful inspection, they vary very slightly in size after I break them. Could this be affecting things like not taking a total consistent dosage?

[ChessieCat]

Glancing at your signature, I found it difficult to see which drug you are taking.  It will be appreciated if would add the name Paxil to the last line.  Thank you!

 

"Could this be affecting things like not taking a total consistent dosage?"

 

Inconsistent dosing may cause issues, especially if you are very sensitive.  Accurate dosing is important and the lower the dose you are taking the more accurate you need to be.

 

From the Tips for tapering off Paxil (paroxetine) topic:

 

Make your own liquid
You can make your own liquid with water. See How to make a liquid from tablets or capsules

[snostorm]

I would like to update my thread.  After no improvement in updosing to 5mg, and suffering significantly with agitation and anxiety, I updosed to 7.5 mg.  I am on day three of this updose.  I see improvement.  I am not fully stable. I can function.  I do have an increase in joint pain.  I didn't realize that it had gotten better as I tapered Paxil down.

 

I was struggling holding at 5mg but scared to increase it. Im still getting waves of anxiety but times when it is significantly less severe after updosing.  Also it seems I can drive more confidently now as I was having significant difficulty.  the motion and eye effects of withdrawal were scary. I am strongly considering reinstating 10 mg and holding for a few months.

 

Is joint pain associated with Paxil use?

[ChessieCat]

Hi snostorm,

 

Thank you for adding Paxil to your signature.  It makes it much easier for us!

 

The best thing you can do now is to hold on 7.5mg and give it at least 2 weeks before even considering updosing.  Keeps notes of symptoms and rate them so that you can see improvements that may not be felt.  You have already started improving.  It takes 4 days for the drug to get to a steady state in the blood after a dose change and a bit longer for it to register in the brain.  Please be patient and give it time.

 

If after 2 weeks you are still experiencing unbearable withdrawal symptoms we can discuss what dose you could increase to.  As little at 0.5mg or 1mg may be enough.

 

I did a google search "paxil side effects joint pain" and found this here:

 

"Treato found 505 posts discussing Paxil and Joint Pain.

In most of these discussions patients report that Paxil causes Joint Pain."

[snostorm]

Thank you very much. I do need to stabilize and hold for a good long while. I have engaged with a therapist who so far is awesome. She referred me to a psych NP who does medication management. The psychiatrist I saw was a serious waste. eventually I will transition to liquid.

 

I have a lot of life changes right now which is making it harder. Seems there is never a good time. Hopefully I can stabilize and when it gets warm I can resume a VERY SLOW TAPER.

 

Praying for stability.

[snostorm]

I have found myself desperately scouring the internet looking for information on how to manage Paxil and getting off.  Basically scaring the crap out of myself reading horror story after horror story of protracted withdrawal related to Paxil.  Cant tell you how many studies I have referenced that indicate Paxil as particularly troubling. 

 

Being on it long term at 15 or so years compounds the issue.  And reading stuff from Shipko saying it might be advisable to not even try to get off if you are on long term because you run a significant risk on indefinite protracted withdrawal. Great.

 

Im at the stage where I want to feel somewhat normal regardless of what dosage I am taking.  Im trying to be patient.  Its maddening.

[direstraits]

I was only on Paxil for 6 months and still suffer a lot...but I had also been on and off several ADs for 20 years before that so that didn't help.

 

I'll be off 3 years in May.

 

how are you feeling now? maybe would be better to just stay on...I wouldn't wish anybody the suffering I've been through the last 3 years.

[snostorm]

I was only on Paxil for 6 months and still suffer a lot...but I had also been on and off several ADs for 20 years before that so that didn't help.

 

I'll be off 3 years in May.

 

how are you feeling now? maybe would be better to just stay on...I wouldn't wish anybody the suffering I've been through the last 3 years.

 

 

Im feeling anxious.  Edgy, and agitated.  Do not want to lose what years I have left with gripping uncontrolled anxiety and panic. Im trying to stabilize after a failed aggressive taper by updosing.  I was never completely off of Paxil.  the furthest I got was 2.2 mg.  Just want to exist without the cloud of anxiety and that pit in my stomach feeling all the time.  Looking back my life on Paxil, although not optimal was way better than what I am feeling now. 

 

More than anything I fear the unknown consequences of long term Paxil use. And wanted to get off. If I thought it would be a slam dunk I would do full reinstatement at this point.   Trying to be patient.

[brassmonkey]

Hi Snostorm-- Please be careful researching paxil WD too much.  As you have seen there is a lot of very scary stories out there.  The internet is a very bias place for such information as the people who have trouble tend to post and the ones who didn't have trouble don't post.  "Expert" like Shipko usually only see the really "hard cases" and in my opinion are jaded to the negative side of things. We have a lot of people right here on SA that are making significant strides in getting of of paxil.  Some have slow tapered and some have CTed but all seem to be making progress in the right direction.

 

I will be finishing my taper in the next couple of months. I took paxil for 18 years before I started to taper, spending the last five years at 40mg. Paxil has a reputation for being one of the hardest drugs to taper, and from what I've seen I will have to agree.  But with the hard cases there are often mitigating circumstances.  Poly drugging, CT, overly fast tapers and the like. You're in a great position in that you've only been on the one drug and have no prior CT.  The taper you did was unknowingly fast but from the outside made a lot of sense.  Paxil MUST BE tapered frustratingly slowly.  My taper has taken just over five and a half years, and yes it has to be that slow.

 

It hasn't been a pain free ride, but the symptoms have been manageable to the point I was able to maintain my job as a research engineer, travel and do my hobbies.  There were time I had to really cut down on things and let the symptoms control the situation for a while, but those times would eventually pass and things improved.  Over the years of my taper I could gradually see my WDnormal baseline improve, slowly at first then faster and faster.  I'm turning 64 next month and am living my life at full speed once again.

 

These drugs were never designed for lifetime usage.  Originally they were meant to be take for a few weeks or months and then stopped.  The problem with long term use is that they stop working after a while and you go into WD even while taking them.  A situation we lovingly call "poopout".  I was in it for several years before I figured out what was happening, and it's not fun at all.  

 

No one can really tell what the long term effects of taking these drugs is. Not until we die and they cut open our brains will we really know what has happened to us. BUT, in every case I've seen (and they number in the thousands) the symptoms and side effects do reverse themselves so people are able to go on and live normal lives post WD.  There has to be some adjusting done, new skills learned and a new outlook on life, these however, come naturally as we progress through the various stages of tapering and recovery.

 

Have patience, you'll get there and it will be soooo worth it.

[direstraits]

It's such adifficult place to be...I wish I knew what the answer is but I don't.

 

I wish you all the best going forward.

 

we all deserve to be compensated for the horrific suffering caused by these poisons but don't hold your breath...so sorry.

 

ds

[snostorm]

Hi Snostorm-- Please be careful researching paxil WD too much.  As you have seen there is a lot of very scary stories out there.  The internet is a very bias place for such information as the people who have trouble tend to post and the ones who didn't have trouble don't post.  "Expert" like Shipko usually only see the really "hard cases" and in my opinion are jaded to the negative side of things. We have a lot of people right here on SA that are making significant strides in getting of of paxil.  Some have slow tapered and some have CTed but all seem to be making progress in the right direction.

 

I will be finishing my taper in the next couple of months. I took paxil for 18 years before I started to taper, spending the last five years at 40mg. Paxil has a reputation for being one of the hardest drugs to taper, and from what I've seen I will have to agree.  But with the hard cases there are often mitigating circumstances.  Poly drugging, CT, overly fast tapers and the like. You're in a great position in that you've only been on the one drug and have no prior CT.  The taper you did was unknowingly fast but from the outside made a lot of sense.  Paxil MUST BE tapered frustratingly slowly.  My taper has taken just over five and a half years, and yes it has to be that slow.

 

It hasn't been a pain free ride, but the symptoms have been manageable to the point I was able to maintain my job as a research engineer, travel and do my hobbies.  There were time I had to really cut down on things and let the symptoms control the situation for a while, but those times would eventually pass and things improved.  Over the years of my taper I could gradually see my WDnormal baseline improve, slowly at first then faster and faster.  I'm turning 64 next month and am living my life at full speed once again.

 

These drugs were never designed for lifetime usage.  Originally they were meant to be take for a few weeks or months and then stopped.  The problem with long term use is that they stop working after a while and you go into WD even while taking them.  A situation we lovingly call "poopout".  I was in it for several years before I figured out what was happening, and it's not fun at all.  

 

No one can really tell what the long term effects of taking these drugs is. Not until we die and they cut open our brains will we really know what has happened to us. BUT, in every case I've seen (and they number in the thousands) the symptoms and side effects do reverse themselves so people are able to go on and live normal lives post WD.  There has to be some adjusting done, new skills learned and a new outlook on life, these however, come naturally as we progress through the various stages of tapering and recovery.

 

Have patience, you'll get there and it will be soooo worth

 

Thank you Brassmonkey.  My therapist told me to stay off the internet.  Its hard when you feel so horrible.  I needed to hear your words.  I so want to stabilize im growing tired of the suffering.  Having a bad day I think largely from disrupted sleep.  high anxiety today.  And some DP. 

[brassmonkey]

The internet isn't all bad. It can be a great way to get a little smile when things are rough, even if you're having anhedonia and not feeling much of anything.  Just the act of watching a kitten or puppy video will have a positive effect, even if you don't break into giggles.  The wonderful landscapes and sunsets, they all remind us that there is beauty out there and feed our sole, even if we don't feel it at the moment.  Allowing ourselves to believe that it's still there and waiting for us can soften the journey if we let it.  On Facebook I joined Cloud Appreciation Society and Magnificent Animals from Around the World just to get my daily dose of natural beauty.  Every little break we can give ourselves will lighten the load.

[ChessieCat]

And Beautiful Places around the world.  Wow!  Thanks Brass these are fantastic.  And I love clouds!  I saw some mammatus clouds recently for real.  I had never even heard of them before I researched them.

 

Anyway, back on topic:

 

Here is a positive video regarding Paxil.  Alto Strata is SA's founder and she was on Paxil.  Video:  Alto Strata's Paxil Prolonged Antidepressant Withdrawal Syndrome (8 minutes)

[snostorm]

Ok so this is the question that has been plaguing me.  I taperd too fast and hit withdrawal syndrome.  Once you do that isnt it important to reinstate soon as to not do the damage that  results in PAWS Alto Strata speaks of in this video?  I have been told to updose marginally to find the sweet spot.  Am i instilling the damage by not reinstating fully by suffering through this conservative updose?  Is it a factor that I wasnt fully off the med?  Am i not setting myself up for PAWS by not full reinstatement? 

[ChessieCat]

What do you mean by "reinstating fully"?  If you mean reinstating fully = therapeutic dose, that is not what we mean at SA when discussing resinstating.  The idea of reinstating is to try to get your withdrawal symptoms to a bearable level, ie a level that you can live with.

 

When we take a psychiatric drug our brain adapts to it.  Once we take that drug away or reduce it, the brain is trying to regain homeostasis, which is why we get withdrawal symptoms.

 

When we come off the drug completely or lower the dose too much, and we get withdrawal symptoms, the sooner we reinstate the more chance it has of working.  If we have been off the drug for a while the brain will have already made some adjustments.  Unfortunately there is no test to measure how much adjustment the brain has made.  Because your CNS may have been destabilised by going off the drug/reducing too quickly, and again there is no test, a small reinstatement is suggested so that if there are issues and reinstatement doesn't work then the drug can stopped straight away.  On the other hand if your CNS has not been destabilised by coming off the drug, reinstating too high a dose may cause destabilisation.

 

It is better to try a small dose and gradually updose until the symptoms are bearable than to hit the CNS with a 4x2 and possibly cause long term destabilisation.  Where these drugs are concerned, more is not necessarily better.

 

I suggest you read or re-read Post #1 in About reinstating and stabilizing to reduce withdrawal symptoms

 

Like I've read someone else post:  we are an experiment of N=1.

[MollyN]

Hi snostorm, I came to search for you and see how you're doing. Reading above you're pretty much going through the usual pattern - which of course is horrible for you! But the great news is, is that if you can find within yourself enough resolve to listen to the good people here, and follow their sound advice, you are going to get there!

 

You mention in passing that your life has lots of challenges - like divorce. Oh my goodness - this and the myriad of changes it brings are huge. Don't dismiss how difficult this all is. Don't imagine that any of us in the world cope beautifully with life changing experiences like this. Can you find it in yourself to give your sweet self some grace? You don't have to have it all together at the moment, and you are allowed to fall apart (fall apart here though, where it's safe xxxx) But the BEST news is that nothing stays the same, and neither will this time. You'll get better, but it takes time, and when our brains are flying and whirling and crashing in WD it's so difficult to be calm and kind to our suffering selves.

 

Felt like a crazy person doing it, but as you know you'll try just about anything for relief - I found EFT or 'tapping' helpful to take the edge off (or at least give me something to do!) and also some sort of tai chi thing off youtube, JanCarol recommended it, it was helpful for sure.

 

I better get in the shower and off to work - big hugs xxxxx 

[snostorm]

Thank you for the kind words and encouragement Molly.  This has certainly been one of the most trying times in my life and throwing Paxil withdrawal in the mix is like throwing fuel on the fire.  Im not quite 2 weeks in from updosing to 7.5mg.  Im not quite stable but I have seen some improvement in my condition.  Still waves of cortisol flowing through my body at times during the day.  Trying to be as patient as possible.  This site is a beacon of light when you are in that dark hole.  

 

wishing you all the best

[MollyN]

I'm always amazed just how very difficult those 'hard times' are - damn they are hard!

 

The cortisol sounds hard to bear - you're doing great - you'll probably just be like the rest of us posting: "ok, I'm going to be patient and calm with this WD thing"

 

... next day: "I CAN NOT BEAR it!! should I updose? drop? what should I DO???!?!"

 

.. then: "it's so bad, I can't move, it's terrible, life is bleak and miserable, I can't sleep"

 

...then.. "I hate the pharmaceutical industry - HATE THEM - I want to kill them, but hold on - I don't want to go to jail" 

 

...then .. "ok, today a little better, looked at the clouds and felt a bit still"..

 

... and repeat ... until those lovely windows are longer and more generous and you slowly realise you haven't been so frantic and hadn't posted for a month because things were actually ok xxxx