Patti2057: Still suffering 26 months AD free

[Patti2057]

Hello. I have been on antidepressants since the late 1980’s. My first, for severe panic and anxiety, was Nardil. I was switched after three or so years to Paxil. Paxil gave me a movement disorder so I was then changed to Effexor around 1992 and Bupropion was added around 2000. On was on those two for the next eighteen years. In November of 2018 I thought I was starting to have movement disorder symptoms again which frightened me so much that I discontinued both medications abruptly, unaware of the consequences (Effexor 150 mg, Bupropion 100mg). This (Neurologist now calling it a severe Akathisia) went on for five months with no reinstatement of antidepressants during which time I also quit drinking alcohol thinking it might be a contributing factor. The movements resolved and stopped completely in April 2019. However, I then developed dizziness that is more of a swaying and am still suffering with this 14 months later. Some days it can be quite debilitating. As you can well assume, I have had everything tested medically and all are negative for anything that could be a cause or a concern. I still wonder if this is withdrawal, if there is anything I could do or try and if I will still heal? Oh, and I am 63. 
 

Thank you for reading. Any feedback is greatly welcome. 

Edited July 13, 2020 by Gridley

[Gridley]

Welcome to SA, Patti2057.

 

Since you've had everything checked out medically, it sounds like this is withdrawal. New symptoms can crop up all along the way to recovery, sometimes quite delayed, and dizziness is a common withdrawal symptom.  Yes, you will heal, but unfortunately we can't give you a timeline as to when that will happen. It's a very encouraging sign that the movement disorder resolved, indicating that, ever so slowly, you are healing.  Does the dizziness come and go or is it fairly constant?

 

This link offers some suggestions for dealing with dizziness.  You can also Google "SurvivingAntidepressants.org dizziness" for more threads on dizziness.

Dizziness, vertigo, light-headedness, rocking or swaying ...

This post also contains some suggestions:

 

"Being still and relaxing, limiting movement. I won't take anything for it because for me it came from WD so I doubted anything would work with WD as the reason behind it. Minimizing all stress to my body helped me because it got worse as I taxed my system with walking, motion, things that are normal for the CNS to handle but now are taxing it. In fact, I discovered that taxing it in any way would increase the symptoms. If I had to do stuff, I would do them when I felt best but realize that after I would revert quickly to the state of dizziness and no balance. Early on in my WD the best time was the morning. Now, right after waking up can be rough due to tremors, but once the tremors settle is a good time though also afternoon.

 

It's like a balancing act in my experience. Taxing my body in any way, and by taxing I mean basic things that used to be done without thought and would never have been considered demanding, added to these symptoms making them worse. The more rest I got the more they improved. Lack of sleep made them especially worse. Stress of any kind made them worse. So basically baby yourself through it. That's what worked for me the most."

---

 

So that you have a better understanding of withdrawal, including protracted withdrawal,  and the healing process, here are some relevant links.  

 

What is withdrawal syndrome.

 

Daily Checklist of Antidepressant Withdrawal Symptoms (PDF) 

 

The Windows and Waves Pattern of Stabilization

 

Brain Remodelling 

 

Video:  Healing From Antidepressants - Patterns of Recovery

 

Protracted Withdrawal or PAWS (post-acute withdrawal ...

 

We don't recommend a lot of supplements on SA, as many members report being sensitive to them due to our over-reactive nervous systems, but two supplements that we do recommend are magnesium and omega 3 (fish oil). Many people find these to be calming to the nervous system. 

 

Magnesium, nature's calcium channel blocker 

 

Omega-3 fatty acids (fish oil) 

 

Add in one at a time and at a low dose in case you do experience problems.

 

This is your Introduction topic, where you can ask questions and connect with other members.  We're glad you found your way here.

 

 

 

[Patti2057]

Thank you for your response and encouraging words. That is a tremendous help on its own. Unfortunately, the swaying is pretty much constant although I’ve had a random day here and there where I don’t notice it;  not too often though. And, as with the piece you included, taxing/stress makes it worse. I have to learn to accept that this truly is withdrawal...unbelievable as it is.  

 

I am so pleased to have found this amazing resource and support group. Thank you for all you do. 

 

Patti 

 

Edited July 18, 2020 by ChessieCat
reduced font size

[Patti2057]

PPPD

 

As a recap I quit Venlafaxine and Bupropion in November 2018 without a proper taper. I have suffered for more than a year and a half with “vertigo” which my Neurologist is now calling PPPD. I am miserable and discouraged and losing hope that I will heal and this will go away. Of course the treatment for PPPD is antidepressants and since I have not tolerated SSRIs well in the past, she recommended trying a tricyclic. I really don’t want to start any type of psych drug again however, my quality of life is very poor due to the dizziness. Any advice or thoughts please? 

 

Edited November 27, 2020 by ChessieCat
added topic title

[ChessieCat]

Please create your drug signature which will allow us to see your history at a glance.  Follow these instructions.  Please include ALL drugs/supplements, current AND previous:

 

Instructions:  Withdrawal History Signature

[manymoretodays]

Hi Patti2057,

So PPPD- which stands for persistent, postural- perceptual, dizziness?

And this developed 5 months after a rapid discontinuation of Venlafaxine and Buproprion?

 

3 hours ago, Patti2057 said:

Of course the treatment for PPPD is antidepressants and since I have not tolerated SSRIs well in the past, she recommended trying a tricyclic. I really don’t want to start any type of psych drug again however, my quality of life is very poor due to the dizziness. Any advice or thoughts please? 

 

I am glad that the severe akathisia that you developed while in acute withdrawal at first, resolved.  I did see where you mentioned a movement disorder as an adverse reaction to Paxil too.

 

Do you have any other symptoms that you would attribute to WD(withdrawal) now?

 

Are you able to do any non-drug practices, or coping?  Things like meditation, mindfulness, relaxation exercises,  deep breathing, some regular, gentle exercise?  Even things you could do, while it might still be hard to leave your bed very often.  I've seen chair aerobics and Yoga on youtube. 

 

I wouldn't either, want to start any AD(antidepressant) drug now.......even if it was not an SSRI.   

 

Is there anything that you have identified that helps.

 

So now, 18 months out from any medications?  I'd sure be expecting some more natural healing, sometimes time can really help.  18 months out after all those years isn't all that long, here in WD land.

 

Oh and I do feel for you.  It sounds very hard and probably often very lonely.

 

Do give a try at the signature, that Ccat asked for above.

 

You might venture into the Finding Meaning forum as well.  Hoping you can find something inspirational or helpful there to connect to.  As well as to other members here.  Don't be shy.  Sometimes just reading another's introduction, and then giving encouragement and support helps with your own.

 

Best, L, P, H, and G,

mmt

 

 

Edited November 28, 2020 by manymoretodays
formatting

[manymoretodays]

Hi again Patti2057,  @Patti2057

  

15 hours ago, Patti2057 said:

Paxil ?-1998

Effexor150  1998-November 2018 

Bupoprion150 2002-November 2018

 

Current Medications: Levothyroxine, Acyclovir 

 

 

 

This ^ looks good.   I found it posted in a reply, in the Signature topic though.

The first post in that topic has the information and instructions about signatures.  The signatures are the section that you'll see below other members posts and helps people understand your context when you post.

 

Now, if you go to AccountSettings/signature you should be able to type the above in there.  Don't forget to hit the Save button at the end.

 

From a PC, you can also go to your user name, at the top right of your screen.  Click/tick on it and a drop down menu appears.  You'll see "settings" in bold, and "Account Settings" below that.  Click/tick on "Account Settings" and then over on the left you'll see "signature" again, where you click/tick and that will take you there as well.

 

Let me know if you have any further difficulty with this.  Thank you.

 

L, P, H, and G,

mmt

 

Also, if you scroll up in your topic, you'll see the link to dizziness, vertigo.......in Gridley's post to you last July.  And then there may be further comments, right here, on your current concerns too, so keep checking back.  This is your main Introduction page, and a good place to ask questions, connect with other members, and keep us updated.

 

 

Edited November 28, 2020 by manymoretodays

[manymoretodays]

And adding in another link for you to look at Patti2057

Dysautonomia(autonomic dysregulation) -POTS, syncope, etc.

this may help explain what is going on with you now a bit more

And we do see this often with withdrawal syndrome

 

Please keep your eye or thoughts on the light at the end of the tunnel too.  Healing.  It happens.

 

L, P, H, and G,

mmt

 

**** and excellent, I now see your signature in place!

Edited November 28, 2020 by manymoretodays
****

[Patti2057]

Thank you. I have been reading a lot of the posts you recommended and am finding inspiration from the stories of others who are (sadly) experiencing similar emotional feelings. 
 

I have redone the Signature and hopefully saved it to the proper place this time. If not, please let me know. 

[Altostrata]

Hello, Patti. When was the last time your thyroid medication was adjusted? People get odd symptoms from too much levothyroxine.

 

Otherwise, dizziness is a very common withdrawal symptom. What you might try is a very small amount of fluoxetine, such as 0.25mg (one-quarter milligram). We often see people with prolonged withdrawal symptoms do better when they reinstate a very small* amount of the drug, then taper off very gradually later. (I suggest fluoxetine instead of Effexor because it has a much longer half-life and a very low dose will last through 24 hours.)

 

* added in by CC

 

Edited November 29, 2020 by ChessieCat
added small*

[Patti2057]

Thank you Alto! The levothyroxine dose has been the same for many years. My thyroid levels are checked often and they are always within normal parameters. I do have a physical in two weeks so I will bring this up.  
 

If I were to try the fluoxetine, and it helps, how long would I stay on it before a slow taper?

[Altostrata]

Hello, Patti. Depending on its effect, you'd probably stay on that bit of fluoxetine 6 months before you come off.

 

Please look into adverse effects of acyclovir on drugs. com. Do you have any of them?

[Patti2057]

Thank you Alto! I checked the acyclovir side effects and aside from the “dizziness” I have been suffering with, I do have leg pain. I’ll bring this up when I have my physical. I’ve started the Fluoxetine and have my fingers crossed. I will absolutely keep you apprised regarding this. Thank you for taking time on this for me. 🙏🏻💖🙏🏻

[manymoretodays]

Hi Patti2057,

 

Just wondering how it's going since adding the 0.25 mg Prozac?

You can add this to your signature too:  Accounts/signature

Just the date, drug name, and dose.

 

I hope it's going okay.

 

Best, L, P, H, and G,

mmt

 

 

[Patti2057]

Thank you manymoretodays for checking in with me.  Unfortunately, after a few days on the Fluoxetine I began having bad morning anxiety and increased dizziness. Since the Fluoxetine was the only thing different, I am attributing it to that and, so, discontinued the Fluoxetine. I did that three days ago but am still having issues. It’s so unbelievable that I am still experiencing withdrawal after two years off. My overthinking brain can’t help but worry that something else is going on or that I’ve got some sort of permanent damage. 

[Patti2057]

Titled:  So frightened (I reduced all caps, mmt)

 

I have been off Venlafaxine and Bupropion for 26 months now (improper taper of only two weeks) and still suffering so much. From all I’ve read, it seems I should feel somewhat better? not symptoms that are getting worse and some that are new? Symptoms are:  almost constant dizziness and feeling it much more in my head than I have in the past; leg restlessness when sitting or in bed; heavy tired legs when walking; inability to concentrate and extreme frustration when trying to do so; bright light bothers my eyes/head; morning anxiety that is new, about a month. I am so worried that my brain is not able to heal or that there is something else going on. I have been tested for everything and neurologist says she doesn’t know what else to do. My quality of life is in the garbage and I’m losing hope that things will turn around. 

Edited January 10, 2021 by manymoretodays
2nd introduction merged to first

[Train28]

Hi, Patti - first, I just wanted to say I'm sorry you're having such a long and tough recovery timeline.  That's very disheartening to not see progress, and I pray things improve for you soon ❤️ 

I also wanted to say that yes, what you're experiencing is normal for some people.  New and worsening symptoms feel like setbacks, but are usually (from what I remember of my research, though it's been a while!) your brain "resetting" things. 

A post I once read compared it to renovating a house: at first, the reno is focused on one or two rooms, and the chaos is intense but localized. (Aka, having a few horrible but finite symptoms.)

Then, as those initial projects near completion, the team starts renovating the rest of the rooms. 

Suddenly, the entire house feels chaotic, even more so than before.  It's an absolute mess in there, and it seems like nothing is ever going to get done. This would be waves, or any days when symptoms are at their worst. 

But, in reality, every single room is closer to being finished than it was before - it's just hard to see it under all the construction dust and noise. 

Occasionally, eventually...you'll see little projects getting done: a kitchen sink installed, a clean patch of new flooring....  Things that give you hope.  You start to see glimpses of the progress being made.  These are "windows," days when symptoms will ease up or, sometimes, disappear entirely.

I would say 26 months is long, but not unusual, to go without seeing any windows. Everyone's recovery is different, and the process definitely isn't linear - I often had symptoms get worse just before they'd start to get better, so I hope that's what you're experiencing now too: a little more renovation before improvements start showing.

I'm hesitant to suggest anything, since we're all different (and because your sig says you're still on some medications), but the one thing I recommend everyone talk to their doctor about trying is magnesium. It helped me turn a big corner after two years, and I still take it to this day. 

More than anything, though, I wanted to reassure you that your brain will heal.  I thought mine wouldn't heal either - that it was too damaged from going cold-turkey off my med, that something else had to be wrong with me, that I'd be stuck that way forever....  That's the worst part about withdrawal, in my opinion: the loop it traps you in, thinking you'll never heal - but you will.  ❤️  

[Patti2057]

Hi Train. I hope you will see this.  I don’t see a Reply option in your post so I’ll go this way.  
 

Thank you for your kind words and your understanding support 💖The House Reno is a wonderful analogy and I will use this from now on in moments of uncertainty. I am grateful that you took a moment to respond to me and gave me some much needed reassurance.  Although we are unique in many ways in our own journey, being able to connect with someone who understands due to their own experience is worth so very much. ‘Thank you’ does not express enough. 
💖Patti 

[Patti2057]

Train, I forgot to ask, what type of magnesium do you take, please? Thanks!

[ChessieCat]

@Patti2057

 

Here's your Introduction topic.  Only one intro per member.  This way your history is kept in one place.

 

patti2057-introduction

 

 

[Train28]

11 hours ago, Patti2057 said:

Hi Train. I hope you will see this.  I don’t see a Reply option in your post so I’ll go this way.  
 

Thank you for your kind words and your understanding support 💖The House Reno is a wonderful analogy and I will use this from now on in moments of uncertainty. I am grateful that you took a moment to respond to me and gave me some much needed reassurance.  Although we are unique in many ways in our own journey, being able to connect with someone who understands due to their own experience is worth so very much. ‘Thank you’ does not express enough. 
💖Patti 

No problem at all! Reading your post took me right back to those days; I remember how scary it is when no doctor can give you answers, and when you feel hopeless thinking healing is impossible.

Healing can be ugly, and horribly slow, and even worse at times than the original conditions that got us put on those drugs - but the one thing it's not, is impossible  I'm so glad the reno analogy helps, too!  I've heard lots of similar ones over the years, but that one's always been my favorite visual. Telling myself, "My brain's under construction; it's messy, but stuff is getting done" was definitely a go-to mantra. 

And to answer your question about the magnesium I take, I prefer citrate (200 mg, vitamin shoppe brand; 1 a day now but I used to take 2).  A lot of people prefer glycinate or other kinds because citrate sometimes causes upset stomach, but after some trial and error I realized it was the most easily absorbed/useful for me personally.  Hope that helps!  ❤️ 

[manymoretodays]

merged Introductions(mmt)

[Patti2057]

Hi everyone. I am so discouraged regarding my healing. I am in protracted withdrawal from discontinuing Bupropion and Venlafaxine abruptly in November 2018.The symptom that has been most troublesome and has been almost constant is balance/ dizziness issues since May of 2019; some days I barely function because, when I’m upright I feel like a drunk person and it is very uncomfortable and unnerving.  
This has recently, in the past month, become more head related (dizziness), a sensation I’ve never had before with the “other” dizziness I’ve been suffering from. Along with this new symptom, I’ve also developed pretty intense anxiety that wakes me in the early morning.  I cannot understand why I continue to feel worse the further out I get...I am petrified that healing isn’t happening and I’m going to be stuck in this hell forever. Any thoughts would be greatly appreciated. 🙏🏻💖Patti 

[Patti2057]

Anyone please?

[tsranga]

You may want to get checked for autonomic dysfunction that may cause these symptoms. 

 

I am almost 2 years into withdrawal, and I have been dealing with orthostatic intolerance (dizziness, brain fog, blurry vision, HR, BP fluctuations etc.), temperature intolerance (too hot/cold), and IBS. I also have the morning anxiety that wakes me up around 4-4:30 and stays through the day.  My sleep also has gotten worse since last April, and I now average 5-6 hrs in multiple blocks, with rarely a continuous night of sleep.

 

I read up on dysautonomia/POTS and started following their regimen to deal with these symptoms.  Mainly ensure that you are well hydrated (48-64oz of water/electrolytes), take frequent breaks from standing, get more exercise (you can do restorative yoga, rowing etc. that doesn't involve standing). Some may need compression stockings, abdominal compression bands etc.. 

 

 

[Patti2057]

Thanks for responding. Did you go to a doctor about the dysautonomia?

[tsranga]

39 minutes ago, Patti2057 said:

Thanks for responding. Did you go to a doctor about the dysautonomia?

I have an appointment next month. It was a 5 month wait.

[Patti2057]

Wow! I hope you get some answers. I know I’ve had BP checked in different positions and there wasn’t much of a fluctuation so I don’t know if that could be the cause of the dizziness. 

[Istm]

I second what tsranga said, personally I developed an autoimmune disease (in my cause a thyroid issue) as well as other health conditions because of the stress of withdrawal. Treating those issues helped me feel a bit better. IMO it’s very important to do blood work/ other medical test to discard other issues because many times people can develop other health conditions during withdrawal that can’t just be “waited out” because they may require treatment or lifestyle modifications. 

[Patti2057]

Thank you Istm. I have had bloodwork done many many times over the past two years along with extensive testing for anything else my neurologist could think of, all being negative. I don’t know if there are specific tests for dysautonomia? 

[tsranga]

3 hours ago, Patti2057 said:

Thank you Istm. I have had bloodwork done many many times over the past two years along with extensive testing for anything else my neurologist could think of, all being negative. I don’t know if there are specific tests for dysautonomia? 

 

You don't have to have BP or HR fluctuations to feel dizzy, but to be diagnosed with a specific form of dysautonomia, you have to meet certain criteria  - HR varying by 30bps and BP varying by 20 (for systolic) and 10 (for diastolic) between supine and standing postures.

 

In most cases of people like us who developed Autonomic dysfunction in withdrawal, our values will most likely not be bad enough to fall into a category.

 

I am using this appointment to rule out anything that I may have missed, and in general to educate myself in building the right tools to cope with it.

 

For more information, see -

http://www.dysautonomiainternational.org/page.php?ID=36

 

[Patti2057]

tsranga thank you. That’s helpful info. I don’t think I fluctuate that much but I understand what you say about ours’ being that way. I’ve messaged my neurologist to find out her opinion on my getting tested. 

[Patti2057]

As I was reading on here yesterday I saw mentioned somewhere that Alto had suffered with this. Anyone know where I might find that thread? Has she recovered from it🤞🏻?

[Longroadhome]

@Patti2057

Hello There

just wanted to post and say I know exactly how you feel. 
i have also had the swaying boat feeling for over 7 months continuous. 
I have found some days it is worse than others and stress definitely intensifies it. People describe it differently snd it does seem to be quite a common symptom especially on the Benzo Buddies site. 
There is no medication that will help I think it’s a part of WD and something only time and healing will help to resolve. 
Like you the sensations seem to be in my head mainly but it also affects my legs because when the floaty boat sensation is bad I feel as if I am going to tilt and fall so my legs are rigid trying to hold me still even though in reality I’m not moving . Exactly like being out to sea on a boat when the waves are causing movement. Is this like yours? 
im still tapering and from what I’ve read doing a CT or tapering doesn’t seem to make any difference if your predisposed to getting this condition during WD then that’s the way it will be. Horrible as it is. 
ive also had all the tests and a brain scan and all came back normal. I believe if I don’t interfere by adding different meds to try and help and just leave Mother Nature to do her thing that at some stage it will resolve. 
I know two years with this condition seems a long time but in the land of WD it’s not really. And it could very well be that one day we wake up and it has gone. This could happen at anytime. After all it came on very suddenly so it could leave the same .. 
we are round about the same age you and I and have also been on meds for years and with the floaty boat we seem to have a lot in common! 
we are travelling the same road so if you need a buddy I’m here 😊

 

[Patti2057]

Hello Long😊

Thank you so very much for your kind response. I feel so alone in this which compounds the symptoms I’m sure. Hearing from you that you are going through very much the same as I am is a sad relief; sad because you are going through this but a relief that you can validate that this is WD. 
I also have leg issues. Sometimes they even ache as if I exercised too long because, as you described, they are trying to keep me still on the floaty boat. I am also experiencing increased anxiety as of late which, of course, adds to the dizziness. 
I admire the positivity you have about this, something I am lacking at this point. I read in another post that, “One more day is one more day closer to healing”. I pray that is true for myself, for you, for us all. And Yes, I welcome you as a buddy to travel this road with💖

[Longroadhome]

The feeling of loneliness and being scared can be overwhelming at times I do understand but the very fact we both have the same symptom (as well as lots of others) and all tests showing nothing untoward means the likelihood of it being WD is practically a given. 
When  I ruminate and get anxious the dizziness exacerbates. Some days it’s extremely bad other days it very manageable. 
Have you monitored your symptoms ? I have over the last two months snd I find it very helpful as I can see that I have better days. If I didn’t monitor then I wouldn’t be able to tell . I do a traffic light system red for severe amber for moderate snd green for mild so at a glance I can see a bit of a window snd wave pattern going on despite the fact for many months I felt  I had no windows . If you feel you don’t have windows please give it a try.
I have lots of other symptoms but this is the one I REALLY dislike 👎 

please try not to worry too much you have other symptoms which should also clarify you are still in WD and your body is still working hard to heal.