Aeterna: Please help me

[Aeterna]

Thank you Dreamspirit :-) 

 

Brassmonkey:   about "You need to give each of your updoses time to settle in before you change thing up again.  It can take several weeks to several months for things to restabilize"

 

Is this only for updoses? When I down dosed from 40 - 20 things appeared to be getting better and better......for about 10 days and then it all went nuts again.

 

 

[Altostrata]

That was too big a reduction. You got withdrawal symptoms.

[brassmonkey]

It actually goes for any change in dose either up or down.  Which is why we tell people to wait a minimum of a month between reductions when they taper.  So for right now you need to pick a dose and stay on it for a good long while to get stable.  Then we can help you work out a good taper plan.  No more dropping by 50%.

[Aeterna]

Thank you Alto and brassmonkey.  

 

I will stay on 30mg and let you know how things go. 

 

My insomnia has worsened over the past three nights. I noticed that at night the panic comes in waves. I wake up a few times with palpitations but can go back to sleep. Then by 2am I wake up with palpitations and panic and I can't sleep again. I just drift off a bit and then get jarred awake by a new wave of palpitations and panic. I lie in bed shaking and kicking from akathisia for the rest of the night, drifting off, getting jarred awake by palpitations and panic over and over. 

[KarenB]

When I have bad nights, I use music to soothe.  I keep headphones ready by the bed, set to play quiet gentle music.  If I feel myself starting to get worked up I start the music before it gets too bad.  I also keep cold water there ready to sip. 

 

I know these won't be any sort of complete answer, but sometimes it helps just to have things to try and take the edge off.

 

Hugs,

Karen

[Aeterna]

Thank you Karen. I always have stuff ready to listen to at night :-)  When the symptoms are not too bad I can listen and it helps take my mind off. When the symptoms are very bad all I can do is kick and jerk in bed. At least after reinstating I can stay in bed. Before reinstatement I would jump out of bed and have to pace around the house between 2am and mid day. 

 

The night before last was a bit worse than the night before. But the day (yesterday) was a bit better. Last night was better than the night before and this morning I am also a bit better than yesterday morning :-) I'm hoping the 30mg is starting to have an effect. 

[Fresh]

Thinking of you Aeterna , is it continuing to improve?

 

The thing I find amazing is that you seem so calm.   I've heard that some people have the physical symptoms

of akathisia without the mental torment. I was blessed with both , so the times I remember thrashing around trying to lay on the bed are also marked in my memory by calling out begging G-d to take me , that i was ready to go , then being terrified  the neighbors would hear me calling out.

 

How would you describe your mental state over the last month?

[Aeterna]

Hi Fresh - I know exactly what you mean. The only reason I can sound calm is because the akathisia is not constant. I could write here when I had a "break." It comes in waves. Before reinstatement (I held out for 4 weeks) it would usually rage for 12-16 hours / day. I got a little break on most days. There were days when it would relentlessly go on with no break for up to 3 days. When that happened I used a benzo for relief as it was just not bearable. After reinstatement, the akathisia improved considerably.  

 

I agree that the physical symptoms that can be observed (the pacing around) is minor compared to the internal (mental) symptoms. It is like being thrown into a fire that keeps burning but unlike a physical fire that kills you after a few minutes, you remain alive. 

 

As such, I believe Dr. Lucire refers to it as a "psyciatric emergency" and "unbearable." Dr. Shipko wrote of a patient with akathisia that could only find relief with a very high dose of benzo (I think it was 90mg / day) - when Shipko got him to drop it to 60mg, the symptoms were unbearable again and the patient killed himself. 

 

It might be worth doing a topic on this site about Akathisia. From reading the forums it appears that this is a very little understood withdrawal symptom by those who have not experienced it. It is in a class of its own in the sense that it might be the one symptom that is unbearable. 

 

I can't imagine how anyone can remain alive if they are in such a state permanently. I lasted one month and reinstated to make it stop. You lasted 5 months (I still don't know how). Many people last only a few days before commiting suicide. I suppose it is down to the intensity of the symptoms. 

 

Unfortunately, not much research is being done in this area. I think it was studied in the past because it is a well-known "side effect" of first generation anti-psychotic drugs. They had to work out how to threat psychotic patients with those drugs while supressing the akathisia. To that end the first line of defence was beta blockers, followed by benzos. Now they don't use first generation anti-psychotic  drugs so much there is very little interest in researching the topic. At least that is what I was told by a psychiatrist who is familiar with akathisia.

 

Very few primary care medical professionals have ever heard of it, let alone seen it. Somethimes I wonder how many suicides due to anti depressants are really as a result of anti-depressant-induced un/mis-diagnosed akathisia.

[Aeterna]

Update: After a few days on 30mg, things appeard to have stabilised somewhat. However, by day 8 the palpitations and panic started again. It is now day 9 and it is worse than yesterday. When I dropped from 40 to 20 mg, it took about 10 days before getting a relapse in symptoms. It is now almost 10 days again. What should I do if it keeps getting worse? Just stick with 30mg? I cannot go on like this much longer 

 

Is this just "turbulence" from the two dose changes? I want to just stick to 30mg until things stabilise. And I desperately need reassurance from people who have experience with this that things will stabilise. 

[LexAnger]

So sorry aeterna for such a roller coaster you had to ride over! I have no clue for what will be the best direction for next, but want to send you a hug for a bit more strength to continue. It's very true for lots of us that we have to hold for much longer for any true effect of changes. Your system is probably vert sensitized by the rather big and fast changes lately it might take quite long to stabilize regardless the dose you choose. I know how how difficult it is, but you will see improvement with endurance and patience.

[Fresh]

Hang in there Aeterna , you need to do each day , each hour , just one at a time.

 

There's a number of threads about akathisia on this site . . . try googling "akathisia surviving antidepressants" and a bunch

of links come up.  This is one of the more recent ones http://survivingantidepressants.org/index.php?/topic/9311-akathisia-nightmare/

 

I agree that you should try to sit on 30mg and reassess in a couple of weeks.  If you can do this without going to hospital , you

have more control over what meds you take.  

However , if you are suicidal and suspect that you may try to harm yourself , then staying at home isn't the best thing.

 

Did you get any relief from the benzo you mentioned?  Have you considered a consistent dose?

You're correct in thinking that many akathisia-induced suicides go unrecognized.  I can send you links to some

relevant articles if you want , but at the moment they may not be helpful.

 

This IS going to pass , you need to keep reminding yourself of that.  SO many people have recovered from akathisia ,

and you will too.

 

I found it helped to do little activities so that my mind focussed on something other than the sensations.

Shoulder-rolls , neck circles , colouring in shapes , cleaning the glass doors , windows , mirrors , writing affirmations

over and over , listening to a speaking relaxation cd . . . make a list of things you can do.  My biggest constant panic

was not knowing what to do with myself , I don't know if you have that too.

[Aeterna]

Lex and Fresh - thank you so much for your encouragement. It means a lot. It is now day 11 on 30mg and things have been slightly better yesterday and today. I will keep you updated. 

 

What concerns me is that the only way to "recover" from akathisia is to be back on the drugs that caused it. Is there any known cases of a person who recovered from it drug-free? (e.g. by tapering etc.) 

[Fresh]

Selmalady and luv2knit . . . it took a long time for them both.

[Aeterna]

Thank you Fresh, I'll take a look at their threads :-) 

[Aeterna]

Update

 

It has now been 2.5 months since the onset of symptoms, 41 days since reinstatement (at 40mg) 27 days since switching to lower dose (20mg) and 16 days since upping dose again (to 30mg).

 

For the past 4 days I would say that I have been "stable" - not quite back to "normal" but no panic, anxiety, palpitations, akathisia, insomnia etc. I am not sleeping as normal yet either, I wake up many times throughout the night and need to kick and jerk a bit in bed, but it the jerking and kicking is easing off. 

 

So it would appear that things are OK at 30mg at the moment 

 

(That smiley face reminds of what Lisa Simpson saw whenever she looked at something negative in the episode where they put her on an anti depressant called Ignorital (pron: Ignore-it-all.)

 

 

I might now be able to read more forum posts without becoming engulfed in fear. Has that been an issue for anybody else? Reading about the terrifying effects, not as a detached observer but as someone who is in exactly the same boat and learning what might happen with dicey odds for ever getting free of it? 

[Aeterna]

After a 2.5 month rollercoaster ride of withdrawal and reinstatement I think I am at a point where I am stabilizing. So what is next? Tapering again. (After staying on this dose for a while longer)

 

But before I taper again I would like to know if anyone have insight into why my tapering failed? This will inform the strategy when attempting to taper again.

 

Full story here:

 

http://survivingantidepressants.org/index.php?/topic/10057-aeterna-please-help-me/page-1

 

Short version in signature. 

 

Please note that I did not get any acute withdrawal (brain zaps / nausea / flu-like symptoms) after tapering. What I got instead (5 months after stopping prozac and 7 weeks after stopping Tramadol) was persistent /chronic symptoms that are, in my opinion, considerably worse. (akathisia / insomnia / panic-fear-anxiety / complete appetite loss) Since I only had 35 doses of Tramadol over a period of less than 6 months I do not think the Tramdol on its own can account for the symptoms - more likely the thousands of doses of Prozac over the years - the Tramdaol maybe just ruined the taper at the end.

 

Three possibilities:

 

1) The Tramadol (Tradamol has SSRI and SNRI in additon to opiate) at the tail-end messed it up. (if so then there is hope to retry)

 

2) The taper was not gradual enough (especially towards the end)  (if so then can adjust pace next time) 

 

3) My brain/body is permanently messed up by Prozac after more than 11 years of use and there is nothing to be done but stay on it for the rest of my life. (if true then no hope)

[Aeterna]

One more thing:

 

4) Maybe something happened because I did not taper from the outset? Two types of withdrawal happened - I went cold turkey, got acute withdrawal, reinstated immediately; and after tapering for a year I got chronic withdrawal. (maybe due to pace or maybe due to tramadol or maybe due to so,ething else). Could having withdrawal (either acute or chronic or both) have an effect on the outcome of subsequent tapering atempts?

[Skyler]

Hi Aeterna... I merged your tapering thread into your intro topic because it's specifically details your journey, and it's helpful to keep all that info in one place.. also there is more traffic on the main forum, so you will get more responses.

 

Skyler

[KarenB]

My first thought was that with tapering over 50 weeks, there was never any lengthy holding period to allow withdrawal symptoms to move through in a more gradual way.  And that, on top of the cold-turkey and reinstatement up/downs might have meant your nervous-system was struggling to find some stability.  Having longer holds next time might also allow you to notice if you need to lessen dose reductions towards the end of the taper - it's such a sensitive part of it all.   

 

Good plan to hold for a while longer before starting another taper.  Give your system heaps of time to stabilise and strengthen, and for yourself emotionally to enjoy being in a good place.  A time of gentleness and ease and nourishing yourself.  Considering all your ups and downs I'd hold for at very least another month, and preferably even two or three months.    

 

I have no knowledge of tramadol but like you say, the fact that it is SSRI and SSNi would have given your system another good bump-around. 

 

It is not true that you are permanantly messed up - your brain is showing you that it can heal.  It shows you this when it responds to dose changes by trying to adjust itself.  So give it the time it needs with each adjustment, and you'll get there.   

 

Hugs,

KarenB

[Aeterna]

Thanks Karen :-)

 

"with tapering over 50 weeks, there was never any lengthy holding period to allow withdrawal symptoms to move through in a more gradual way"

 

What do you mean with holding period? You mean taper down in a nonlinear fashion? Or taper down and hold for a few weeks then reduce again etc.

[AliG]

Hi Aeterna,

 

I think what Karen means , and I agree with is when tapering, you hold if you have symptoms.   Wait until you settle. Listen to your body , and then move on, if you are feeling good. If not, then " Hold", for as long as it takes.  Be patient and prepared to do a long, slow taper.  It will serve you well in the long run. The aim is to be functional in your life, and to move through this smoothly, with as little disruption to your life, as possible.

 

Ali.

[KLA324]

Aeterna -

 

You sound a bit better and I pray your RI continues to go well along with the weaning when you begin.

 

I stopped Sertraline in May and was doing fine. I was then given Tramadol (not knowing it was an AD) for pain due to a kidney stone at the end of August. I only took the Tramadol for 2 days for relief of the pain (maybe 10 pills at 50mg each) and yet a few weeks later I crashed. Yes, I was taking Trazodone for sleep and Phentermine for weight loss which I stopped CT at the same time so I will never know which of those caused the hard fall.  But, to me, the important part is not what caused the crash but more what I can do NOW to make sure it doesn't happen again.

 

So, similar to you, I have started a RI on a low dose AD (Celexa 10mg). I plan to remain on that dose for a month and then begin a gradual wean.

 

Granted...I don't have the akathisia as you do but until I did my RI and stabilized, I was overcome with depression, anxiety, crying, insomnia, cortisol mornings, intrusive thoughts and more.

 

Hang in there. It appears all the "ups and downs" of your doses has upset your CNS. Give things time to calm down. I keep Propanolol handy at all times but have only had to take it twice. Just knowing it's there seems to help me.

 

Karen

[KarenB]

Yup, thanks AliG for working out what I meant .  You can do holds as Ali said - ie when you notice in your body that you need to wait longer before making another taper, but you can also decide to hold for a longer period of time just to see if any symptoms need to 'catch up' with your tapering. 

 

For example you might do five or six months of reducing your dose by 10% monthly, and then decide to hold for say two months before you continue to make reductions.  It just reduces the changes of you getting ahead of yourself, so to speak.

 

You can liken it to hiking down a mountain - you can keep going at a steady pace for quite some time, but you'll do better if you stop half way down and have a good lunch and a nap, rub any sore muscles, maybe take in the scenery then get all prepared for the next part of the hike.   

 

It's also worth noting that the 10% is taken off your current dose, so it will change with each reduction, getting smaller and smaller towards the end when you have to decide what will be your 'jumping off'' point.

 

You're doing great Aeterna, and I'm glad you asked for clarification.  So good to hear you sounding positive about your recent stabilising. 

Hugs for you,

KarenB

[Aeterna]

Update - I have returned to work this week   I'm not nearly back to normal but I am now functional enough to be able to work! Some crazy palpitations for the past two days but that is nothing compared to the earlier symptoms.

 

AliG - "Be patient and prepared to do a long, slow taper.  It will serve you well in the long run. The aim is to be functional in your life, and to move through this smoothly, with as little disruption to your life, as possible."

 

That is pretty much the plan. I will taper down from my current 30mg. Two things I need to work out before I start though 1) How long to stay on 30mg before tapering and 2) Rate of slow taper. When I was tapering at 0.8mg / week over 50 weeks (40mg to 0) I did not get any acute withdrawal. So it seems that this rate was OK for me to avoid acute withdrawal.

 

What worries me is the persistent/chronic symptoms that can appear afterwards - So even though a slow taper is known to protect against acute withdrawal (brain zaps / nausea / dizzyness / flu-like symptoms) it is not known for sure if a slow taper protects against chronic/persistent symptoms that kick in afterwards (Heard this from both Stuart Shipko and David Healy). But the best I can do is try.

 

Another thing I am wondering is whether there is anything known about the differences in outcome when tapering without ever having gone through withdrawal and the outcome when tapering after reinstating due to withdrawal.

 

Lastly I was wondering if anything is known about reinstatement outcome in the case of symptoms re-appearing after more than one failed taper. (It is known that reinstatement does not always improve withdrawal symptoms and in some cases make it worse.) In my case thus far it appears to have worked. I am worried that if I taper again and the symptoms reappear again a few months after I reach zero that a reinstatement might not succeed a second time. My symptoms are not bearable so reinstatement in case of reemergence of symptoms is the only option. The alternative is death. So this is quite serious.

 

KLA324  - Wow! Another Tramadol incident! It is really easy to mistake Tramadol as a "harmless" opiate because there is not mention of the SSRI/SNRI aspect on the leaflet or the packaging (in the UK anyway).

 

from your signature - "Oct 2nd - CT from Trazodone and Phentermine - CRASHED 2 days later. Severe depression, anxiety, constant crying" Interesting. That is EXACTLY what happened to me after CT-ing Tramadol.

 

KarenB - "It's also worth noting that the 10% is taken off your current dose, so it will change with each reduction, getting smaller and smaller towards the end when you have to decide what will be your 'jumping off'' point" - Yep - that is what I am currently thinking of doing. I remember reading about a study involving PET scans that seem to indicate that 10 percent is the way to go.

[KarenB]

Hi Aeterna, 

 

You must be feeling pretty good about being able to manage work - that's awesome. 

 

1.  How long to hold:  Play it by ear, while remembering that the longer the hold, the better off you will be in terms of stability.  Personally, I like to have a month of feeling really good and with only minimal symptoms.  Patience really pays off in the holds, because the holds are where healing happens.  Holds are like insurance .  

 

2.  Rate of taper:  I think you've got it right when you say its the chronic symptoms you have to plan for.  This forum recommends starting with the monthly 10% rate and seeing how that goes for you.  It can't guarantee anything, but it's your best bet.  To me it makes sense that gentler approaches will mean better outcomes - but I have no studies to back that up.  Considering your fears about what could happen if it doesn't go well, I'd say you should go as gently as possible to give yourself the best chances. 

 

I don't know enough about your other questions, so I'll leave those to other wiser people .   

[Fresh]

Lovely to hear you're well enough to be back at work Aeterna , what a relief for you.

 

I think your taper may have fallen down because you didn't hold anywhere along the way.  

There's a lovely analogy by Rhi (mod.)   about how antidepressants are to our brains as a trellis is

to a plant.

If you have a plant that has grown with the support of a trellis then suddenly remove the trellis , the

plant falls down and cannot recover.  

If you were to remove a small section of the trellis at a time , the plant can adjust and strengthen

and continue to thrive.

So it is with ad's . . . remove a bit at a time , then wait for the structure to recover.  Keep taking

bits away and the structure can't cope.

 

After my big crash , I waited 8 months to stabilize before tapering.  I wanted to to see

how well I could get and I was continuing to improve.

My usual hold has been for 2 months.   I am sitting on 25mg now till the New Year , which

will make it 3 months (because who needs w/d symptoms leading up to Christmas , lol).

I wait until ALL w/d symptoms have stopped , then have  another month with no symptoms.

 

It's not a sprint , it's a marathon.  

 

[Hopefull]

Hi Aeterna,

 

You really have been through a lot.

The doctors are pathetic and don't understand when something out of ordinary happens.

You are not hysterical.

You are dealing with WD symptoms.

I have experienced cortisol/ anxity surges too. Heart palpitations also.

 

It is much better now.

I have not had it for a while.

You will get better.

Be patient and persevere.

Best wishes, Hopefull.

[Aeterna]

Update 

 

Hi Everyone. I've not been on here for a few weeks as I was back at work and catching up. 

 

Something really weird happened this morning though - when I woke up I had symptoms again (out of nowhere) I have been stable for the past 5 weeks going to work etc. 

 

Any ideas where this could come from? It is not severe, but it is definitely there and it is freaking me out. I cannot go through another round of this, the last time nearly killed me. 

 

I have been taking 30mg every day. It should just stay stable, right? Is this a blip / a speed bump? Or the beginning of more trouble? Has anyone seen this happen before? 

[Aeterna]

Another update. Went to sleep. Awake after 1 hour. Symptoms. Oh no. Not again. Please. 

[Fresh]

It's just a blip if there's no other explanation . . . have you taken any new medications or supplements that might

have triggered it?

[Aeterna]

Hi Fresh :-)

 

I haven't taken anything. Had a bit of a headache this weekend so I took Paracetemol once on Sat and once on Sunday. (But I had that before and nothing happened) It is now the next morning and I'm still having symptoms. Couldn't sleep much last night - it was terrible. It is not as bad as it was at its worst. But I've been kicking and jerking all night and bashing my head and then kicking and jerking again. I really don't have the strength for another round of this. 

[Aeterna]

Have to eat now. Finding it very hard. I have NO appetite whatsoever. I have to force the food down. It is very difficult. 

[ChessieCat]

Hi Aeterna,

 

Sorry to hear that you've got symptoms.  Looking at your signature block, from Feb to Sept this year you've taken a couple of different medications of different doses .  It might just be that the brain is still recovering from those.

 

I'm not sure if you have seen these.  If you haven't they might help you to understand what is happening in the brain.  They helped me.

 

Video: Healing from Antidepressants: Patterns of Recovery

 

Brain Remodelling

 

Good luck.  Hope it's not long before you feel stable.  CC

 

[Aeterna]

Thanks ChessieCat :-)

 

Going to try and sleep soon. Will post update. My hope is that this thread might be of some use at some point to someone else in a similar situation. (e.g. reinstate prozac start at high dose / drop down then drop mid way then about 7 weeks later get symptoms again) We'll have to wait and see how it ends.

 

Alto -  if you are reading this - do you think this could have happened because the Prozac is inhibiting its own metabolism? 7 weeks seems to be a key duration for Prozac with me.

[KarenB]

Hello Aeterna,

 

It is really normal for waves to pass through at any time.  Your brain is still working through the healing it needs after all the dose-changes.  I know it's especially tough when you've had a great window - it feels like a kick in guts.  You might find it turns out not to be as long or as bad as last time - you never know with this random process.

 

Focus on your self-care things - good idea to sleep for a while.  I wonder if some sort of protein shake or smoothie would be easier to eat if food is unappealing right now.  At least it slides down easily.

 

Hang in there Aeterna, you can ride it out,

KarenB 

[Aeterna]

Hi Karen - Thanks. I'm not sure this fits the windows / waves pattern? That happens during WD? I have looked at writeups of people who have reinstated and as far as I understand they stabilise and then as long as they stay on the dose they remain pretty much stable.

 

I have been up all night - I cannot sleep at all. I wish I could. I am very tired. Been pacing up and down all night and when my muscles get too tired I kick and jerk in bed. And then pacing again. It is unbearable. If I do not get respite from this I don't know what to do. It is hard to be stationary while typing this. I am really desperate and very scared now.