Tao of the Brassmonkey

[Bego82]

@brassmonkeyI hope you do get better as I’m sure you will.

I suffer from migraines too and I’ve been told a few scary things which weren’t true at all, just a poor doc doc lashing in the dark. 

Your posts are lovely! Thanks for sharing x

 

[Nomansland]

Dear @brassmonkey,

 

i want to say thank you for all the help you offered me and all the other people on SA.

 

Very sorry hearing about your health problems, but iam sure you are doing your best to figure out the best way of solving

these issues. Cant really give any advice as i dont have any knowledge in this area, sorry. But its good to see you staying calm

and get all the help you need from your family. Please keep us updated if you want and have something to share with us.

 

Greetings

 

Nomansland

 

 

 

 

[Lilabella]

Thank you for the link to the survey I have just completed it. 

[Nomansland]

Youre welcome @Lilabella,

 

iam sure every participant helps!

 

Greetings

[hayduke]

Hope you are feeling a whole lot better soon, Brass.

 

Cheers

Hayduke

[Longroadhome]

@brassmonkey

Just checking in Brass and wondering how you are ? 
Hope things have started to settle. 
Take care

LRH

[brassmonkey]

Thanks for the well wishes everyone. Things are going right along with no real changes. I have more appointments and tests coming up, so nothing new to report.

[Frogie]

@brassmonkey

 

I'm glad to hear you are hopefully doing better.

 

You always give me (((monkey))) hugs, 

 

So I'm giving you some (((frog))) hugs back.

 

Take care,

Frogie xx

[mdwstrx]

@brassmonkey🐒

Thinking of and praying for you!

Grateful for all you do here. 

md

🌞

[brassmonkey]

Still pretty under the weather. Vision problems are continuing, I have a referral to a neuroopthomologist (spell checker isn't even close on that one) but am having to jump through a lot of hoops to get there. Things are starting to affect my left eye now too.

 

My back went out on me a couple of days ago so I'm not getting around much ATM. We were meant to leave for India a few days ago but that was cancelled. Totally disappointed with that one, but they are requiring a 7-day quarantine for all people entering the country and the new variant B2 something or other is running rampant there, so it is best to just hole up and stay home. Not a whole lot I can do anyway.

[Moonpie]

@brassmonkeyI am sorry to hear you are having these health problems.  I am praying for your comfort, strength, healing and for the Lord to guide all the doctors who will care for you. To have to cancel your trip is a big disappointment,  but in view of what you said it may be the best thing for now and and something to look forward to when you are well. Appreciate all you do. Please take care

[Heath]

@brassmonkey I hope you get answers and get feeling better soon ! Prayers!

[Moonpie]

@brassmonkeyhow are you feeling?

[brassmonkey]

Frustrated ATM. The specialist is taking their own sweet time getting back to me about an appointment. It looks like the referral may expire before it happens. The eye problems are calming down to where they are not so bothersome, but I still get caught seeing things that are not there, flashes of light and the like.

 

My hip/back went out on me about two weeks ago which makes it quite painful to stand still or lie down for a long time. I've started some exercises that seem to be helping but it will be a while. During the day I'm fairly mobile and can work on projects, but really have to pay attention and take breaks as needed. I'm in the middle of building a new chest of drawers which has been a really fun project.

[Erell]

((((Hugs))))

[Frogie]

@brassmonkey

 

Hi Tom,

 

I'm sorry to hear that you have to rely on the dr appointments not being fulfilled at this point. That is very frustrating to say the least.

 

But the chest of drawers project sounds like something right up your alley and is a nice distraction also.

 

Frogie ((((((HUGS)))))) to you.

[Moonpie]

@brassmonkey I am sorry to hear you are still facing these struggles and now have back and hip  issues too.  Dealing with doctors can be very frustrating.  They only thing they seem to get into a hurry about is getting their bill paid.  I am glad your eyes are showing some improvement and the exercises are helping some. Your Chester drawers project sounds amazing! You must be very talented! Would love to see pictures when you are done!  A family heirloom!  You have an amazing attitude.  Thank you for the update!

[hayduke]

Hey Brass.  Hope you are taking it easy and getting to rest, relax and rejuvenate.

The carpentry project sounds fun

[getofflex]

Hello Tom, I'm sorry you are dealing with various health issues, and struggles to coordinate your referral with your appointment.  It sounds very frustrating.  I hope your building project compensates for this.  Take care! 

[brassmonkey]

Back on the road again. The middle section of the US is not very WIFI friendly. In Kansas City for a day or two and am getting better reception so I can check in. Going to drop off the grid again soon for several weeks.

 

[Ariel]

Hi @brassmonkey 

Just a little note to say you're awesome! I so appreciate you and your myriad invaluable contributions site-wide. I find myself returning again and again to your various posts, e.g. the Tao. Your writing is perfectly clear and true and helps me so much. Thank you!

I wish you all the best in your present and future endeavors. Blessings <3

A.

[brassmonkey]

Missed an important milestone a little while back, so I guess it wasn't all that important. As of the 15th I've been paxil free for five years.

 

I missed the date because there are too many fun things going on in my life to think about it anymore. It's in the past, over and done with. There probably are some residual effects from being on the drug for so many years, but honestly, I can't tell what they would be. As I grow older there are a number of medical things going on that have many of the same symptoms, brain fog, lack of concentration, body aches and pains and the like, so why worry about it.

 

I have had a diagnosis on my vision problems "Acute Idiopathic Blindspot Enlargement Syndrome". Pretty rare, my opthoneurologist  only sees it a couple of times a year. They don't know what causes it, but it eventually goes away and usually doesn't come back.

 

Well, I'm on the road and we are about to leave for the local Zoo. Not as good as being in Kenya, but does the trick.

[Longroadhome]

Firstly congratulations on being 5 years free of Paxil. What an achievement. It may not mean much to you now as you say, but you have paved the way for so many others, including myself,  that tapering from this drug can be done successfully.

 

I am so pleased  that the diagnosis on your vision is something that will resolve in time. That must be a tremendous relief for you.

 
Enjoy your time on the road. A big ((((hug)))) from me to you for the support you selflessly give to so many of us here. 
 

 

[getofflex]

Congratulations on your 5 year anniversary of being Paxil free!  You are truly a winner.  I'm sorry you are dealing with health issues, but I'm glad that you have fun things going on, too. Sounds like life.  

[Erell]

"I missed the date because there are too many fun things going on in my life to think about it anymore." ❤️

Thank you for the inspiration !
Enjoy your life dear Brassmonkey !

[divegrl]

Hi!

 

Glad you were able to get a diagnosis. Thank you for continuing to share your story and travels here. 
 

Congrats on 5 years. That is truly amazing! Have fun at the zoo!

[brassmonkey]

Just for my own records I want to record that last night I had a big old brain zap. Haven't had one in several years. This one was different thought. There was a double banded "strap" of light around my head at eye/ear level instead of the electric lightning bolt I usually get. There was also a chiming like "fairy bells" instead of the electric arching sound. It was just as quick and made my body jump a bit.

 

I'm five years out now so it probably has nothing to do with WD, but with the going problems with my eyes I just wanted to make a note. Speaking of which I have more of a diagnosis on that front. The main acute event beck in December appears to have been a "vitreous detachment" where the "eye jelly" pulled away from the retina. It did a clean job of it and only produced a few more floaters. Nothing dangerous, just a part of getting older. We are still trying to sort out the misc. flashes and dark patches. Current theory is decreased blood flow to the eyes, but that is being disproved by Ultrasounds, MRAs and various tests. I'm working with the top guys from UCLA and they aren't finding much. Got another appointment in a few weeks, we shall see.

[Ariel]

@brassmonkey

 

You wrote 

25 minutes ago, brassmonkey said:

Just for my own records

and I'm not sure whether this means you'd rather not receive comments. For this reason I will refrain from commenting of the more emotive variety (you might imagine many mushy expressions of support here ____ ). 

 

However, I'd like to mention this paper, just in case you are not yet familiar, and in case it might prove interesting or pertinent in any way.

The paper reports (if not posits) a correlation between lateral eye movements and brain zaps, which is why I thought of it when I read your post. 

 

For what it's worth:

 

*

 

Brain Zaps: An Underappreciated Symptom of Antidepressant Discontinuation

https://pubmed.ncbi.nlm.nih.gov/30605268/

 

Abstract

 

Objective: 

To describe the characteristics of the electrical phenomena of antidepressant discontinuation syndrome known as brain zaps and their effect on quality of life.

 

Methods: 

We examined 595 unsolicited posts made by individuals frequenting a popular lay mental health website. The site was accessed between December 13, 2014, and December 12, 2016, and its content was saved in a text document. The posts had been accumulating on the site since December 2014. These posts were analyzed and separated into 648 separate statements regarding antidepressant intake. Of the statements, 378 contained reference to symptoms experienced in the context of antidepressant discontinuation. These posts were further analyzed for specifics of the medications involved, temporal characteristics of the medication intake, associated symptoms, specifics of the "zap" experience itself, and effect of the zaps on quality of life. As this was a convenience sample, only qualitative analysis was performed.

 

Results: 

Venlafaxine and paroxetine were reported more frequently, and fluoxetine less frequently, in the sample compared to their frequency of prescription in clinical practice. This finding mirrors the frequency distribution of all withdrawal effects versus antidepressant prescriptions written as reported in the literature. The most likely cause of brain zaps was abrupt discontinuation of the medication, but gradual tapering had only a partial mitigating effect. An unexpected finding was the frequent association of brain zaps with lateral eye movements. The presence of brain zaps was typically transitory, but in a small number of cases it caused significant disability lasting for months or years with no treatment available. Patients' inability to obtain effective help from prescribers and the perceived lack of interest in this symptom on the part of the medical profession risks fueling antipsychiatry attitudes among patients.

 

Conclusions: 

Brain zaps are a poorly understood symptom of antidepressant discontinuation, which require further study for both better prevention and treatment. The apparent association of brain zaps with lateral eye movements may open avenues for investigation of this process.

 

© Copyright 2018 Physicians Postgraduate Press, Inc.

 

Excerpted from Discussion section in the paper proper:

 

Besides the SSRI discontinuation syndrome typically described in the literature, such as vertigo or nausea, we found some heretofore unreported symptoms as well, such as hearing a sound concurrently with the zaps or a sense of momentary disorientation or unreality. The sounds were invariably described as having a static or sizzling quality, with quite a few posters stating that they heard their eyes move. One of the more surprising findings from this data set, one that also has not been described in the literature, is the report of lateral eye movements acting as a trigger for the zaps—it was the most frequently described trigger on this website. Even in the case of the second most frequently reported trigger, running/walking, the movement of the head or eyes can be assumed to be involved, thus further reinforcing the involvement of eye movements. In the few instances when behaviors reducing the severity of brain zaps were reported, the actions specifically involved not moving, or fixating, the eyes. The only vaguely similar report in the literature came from Zajecka et al.3 Of the 15 case reports reviewed in the article,3 4 contained “electric sensations” and 2 contained experiences involving some unspecified abnormalities in eye movements. All 6 reports came from different patients. No connections were postulated to exist between the 2 phenomena.3

 

*

 

Sending hugs and healing vibes <3

A.

[brassmonkey]

Thanks Ariel, interesting paper. I find them quite interesting. This one was so different from the ones I usually got, and I haven't had one in a long time and with the ongoing eye problems I just wanted to keep a record. But your "mushy expressions of support" are always welcome.

[brassmonkey]

Sitting in a hotel room recovering from a COVID scare. We flew to Cleveland a week ago to see family for the Holiday. The next day one of them tested positive. So, we got to lock ourselves away for a few days. Our tests came back negative, so all is fine. Now we just have to negotiate family gatherings and stay safe.

 

Going to be on the road for several more weeks with limited internet. 

[Erell]

Glad you are safe, enjoy your trip! ☀️

[brassmonkey]

We got back early this morning. It was an interesting trip. Saw family, had a COVID scare, saw an amazing cirque de Sole show, caught up with old friends.  Now we are in the planning stages for some big trips for the coming year. India is booked and we are looking at several places in Africa and hope to make it to Easter Island this time. Today is jet-lagging in the recliner, laundry and opening the house back up. Tomorrow is getting started on all the new projects I have lined up.

[brassmonkey]

Today is the winter solstice. For many it marks the beginning of a new period in their life. It is a time for letting go of negative energies and trauma of the past and opening oneself to the possibilities that are ahead.

 

One ritual that can be done today or in the next few days is to gather, express and release the dark thoughts that can oppress a person. This is done by actively thinking about those thoughts, not experiencing them, but rather observing them, what they are, how they make you feel, and what they mean to you. Next is to write them down, this can be a fill description or just bullet points. The important thing is to get them down. Once they are on paper then banish them from your mind. Take the paper outside to a safe place. Keep it folded so you can't read it. Concentrate on the paper for a moment and then light it on fire. As if burns let the relief flow over your body as you sent the negativity off into the universe. When the flames have stopped grind the ashes into the dirt with our foot and verbally acknowledge that the thoughts are released and will not trouble you anymore. In the next few days, if the thoughts try to come back, tell them "I have let you go, you have no power over me, you are not welcome here". Again, let the thoughts disperse into the universe.

 

It sounds very "new age", but I have used it myself many times and have seen if be very successful with many people I know.

[brassmonkey]

I just wrote this in a pm to a member who asked about my personal experience with bridging and handling anxiety and thought other people might be interested:

 

When I started my taper all those years ago it was like the "wild west". People were trying many different things and throwing around a lot of different information. It was very hard to find good information as to what worked and what didn't. I ended up on a forum called Paxilprogress. It was a large forum like this one and had a lot of people who seemed to have a feel for what was going on. They had a membership of around ten thousand active members and an online following of 10X that. One of the primary members had just successfully finished the first documented 10% baseline taper and t was making quite a stir.

 

At that time, it was already known that Paxil and Effexor were the hardest two drugs to try and taper and that poopout was a real thing that really complicated thing. Bridging was a concept that was tossed around but there was little actual data on its effectiveness. The most common bridge drug was Wellbutrin, and many people were reporting having a very tough time making the bridge and an even tougher time with the follow up taper.

 

I considered the idea while I researched the site. I actually took several months to research things before starting my taper. I really dug into how people were reacting to their tapers and what was working and what was not. I was pretty sure I was in poopout, but there was very limited information as to how to handle the situation. My thinking was to just reverse the process that got me there in the first place. I had updosed twice, felt better and then started to feel bad again. So, it was pretty obvious to be that the problem was dose dependent. 

 

Because of all the negative things I had been seeing about "bridging", the actual lack of information, and other people's poor results with Wellbutrin I decided that a bridge was not a good idea, so I didn't do it.  Over the years it has come to light that "bridging" is not an effective was to taper. Especially with Paxil and Effexor. The success rate is proving to be much less than 50%. Leaving those who are unsuccessful in a very painful position for many years. Our own moderator Erell is a good example of a bridge gone wrong.

 

We only recommend two supplements during ADWD: magnesium and fish oil. Of the two magnesium is the one that helps with anxiety, but it can only go so far. There are three other supplements that can be used on a rescue dose basis: passion flower, valerian root, and California poppy. However, they all have their drawbacks and must be used sparingly and carefully. (I do not recommend them for the general membership, but their use has some helpful in some cases). There is plenty of discussion about them throughout the site.

 

Massive anxiety was a hallmark of my waves. Which continued for many months after I jumped to “0”. Underlying anxiety was a common symptom throughout my taper. It would vary on an hourly basis throughout the day. Ranging anywhere from 0 to 10 and changed without notice. Distraction and acceptance were the two best tools to handle it. I finally had to give in and stop fighting and accept that it was there and that there was nothing I could really do about it. This meant living with it as best as possible and working around it. Some times I would have to give in and let it flow over me, run it’s course and flow away, but those times grew less and less.

 

Based on the teachings of Ashton I refined the technique of AAT (Acknowledge, Accept Float). Here is a link that talks about it” AAF - Acknowledge Accept Float - Symptoms and self-care - Surviving Antidepressants It takes a bit of practice but is very good at helping with the anxiety and panic.

 

There is another concept called capitulation. I talk about is several places around the site, and several times in my intro thread Tao of the Brassmonkey. A search should bring it up.

 

I consider tapering out of poopout almost as hard as going CT. The frustration level with the lack of seeable progress is off the charts. The trust that a person has to have in their body is considerable because you have to taper even though you don’t see any progress for years at a time. It was two and a half years before I saw any progress. All that time I faced WD symptoms on a daily basis, never knowing how I was going to feel that day. Which was usually quite bad. But the only way out is down, so no matter how poorly I felt I made myself keep going. The Brassmonkey Slide method really helped because it kept the symptoms from spiking with each reduction.

 

 

 

[littlebird]

Thank you for sharing your story, and being helping pioneer exploration of this, not to mention helping so many people along the way. It really helps to read about success stories, gotta keep my eyes on the prize!

 

51 minutes ago, brassmonkey said:

There are three other supplements that can be used on a rescue dose basis: passion flower, valerian root, and California poppy.

 

Ooh, I have these in my medicine cabinet! I've tinctured them before, but that can be a bit strong and taking them that way would have to be rescue mode for sure. I do make tea with them sometimes, I should start doing that again for a very low dose of calming herbs.

 

The supplements and tinctures can be a bit much, but also might be what I need when anxiety is taking the reins. Tea might be a good middle ground to experiment with! Haven't been doing my herbal thing so much since starting this med process, and it might be just what I need. Thank you for this reminder!

[j1290]

Hi Tom!  Always fun to hear about the Before Time back in the PaxilProgress days around 2011.  I was SoCalStarter getting off Effexor back then.  It really was the wild west, there just wasn't much info available.  Real good bunch of people on that site, yourself included of course.  Your encouragement back then helped make it possible for me to get off Effexor after a 3+ year taper.  

 

We all deserve a medal for tapering off of these pills.  In lieu of that, I think living your life to the fullest is the best conclusion to tapering, and it sure sounds like you're doing that.   I'm looking forward to hearing how your travel goes this year, and it's always great to see a fellow traveller here.  All the best!