6Eggs: Rexulti - severe neuological/functional PWS. Anyone else experience this?

[manymoretodays]

Hi 6Eggs,

I merged your new topic back here for 2 reasons.  One, it's nice to have all your information together to follow you, and comment.  And Two,  we've got a couple different topics that relate to your questions.  Maybe you've seen them?  If not, always good to do a search of site before starting new topics.  You can search from an outside browser, just put survivingantidepressants.org somewhere in the search topic, along with the topic or subject you are asking about......... to see what we have.  Or go to symptoms and self care and do a search in the search box there that is in the upper right hand corner of the screen.

 

Sugery and anesthesia

talks about dental surgery ^

 

Should I worry about taking opioid pain medication?

 

Painkillers in withdrawal: aspirin, ibuprofen, paracetamol, acetominophen, naproxen, codeine

 

Cipro, Levaquin, Azithromycin(Z-pack), and other antibiotics

 

12 hours ago, 6Eggs said:

My biggest concern are the antibiotics, I heard some stimulate serotonin receptors and anything that even mildly stimulates or blocks serotonin in my body is a big no no!

 

I've never heard that about antibiotics.  Yet, on a search here is what came up: 

https://pubmed.ncbi.nlm.nih.gov/35819136/

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9796968/

 

One seems to talk about the change in serotonin in the gut and I haven't reviewed them very thoughtfully,......... yet.  How long do you have to take antibiotics for?  That might make a difference too.  Less time taken......perhaps less change to the gut flora and serotonin, right?

 

I guess I never really wondered why in some, in WD, antibiotics do lead to instability or more WD symptoms.  Goodness.  I only had to take them once, while tapering, and once or twice since off(at varying times from my end of taper).....legitimately for worries about bacterial infections....and really did not have problems.  I know that the floxin class and benzo's are not a good idea, as the floxins occupy the same receptor as benzo's and can create havoc that way.

 

Amoxicillin is broad spectrum, and that is one I did take after tapering and prior to dental surgery, without any problem.  I am my own case though, that may not be the same for you.

 

I'd avoid tramadol too, for a pain medication, apparently it's a SSNRI and maybe plus opiate.  I'm not sure on the opiate part but I wouldn't want to touch an SSNRI ever again myself.

 

And how are you now?  Just holding on the split dose of moclobemide, now 10.5 mg/day?  Definitely check interactions between the moclobemide and any possible drugs for the dental surgery.  Drugs.com.  You're familiar with that now aren't you? 

On 9/6/2023 at 12:01 AM, 6Eggs said:

The last few reductions have yielded immediate relief but they only last a few days at most before feeling crap again, and then the reactions at my dosings are more severe.

I feel like this is my CNS and body trying to reject the drug, feels like it gets used to the reduction briefly before more aggressively trying to reject it once I hold.

 

What kind of percentage are you tapering the moclobemide at, from each prior dose?  And how often do you taper it?  I'm not sure if a CT is a good idea though.  What do you mean, your body rejects the drug?  Could it not be just plain WD though?  Do you hold when symptoms arise?  Or do you then just taper more?  It just occurs to me that you might be going too fast........what is your math like now, or are you close to doing a 10% or less taper from each previous dosage every 4 weeks.  Of course you could have overlapping WD too, from your previous drug WD, the Rexulti.  Happy to discuss.  I know you were basing some of your tapers on the drug(s) interactions with each other too.........which we don't often do........I've seen someone else do it once, but I did not ever hear the end result.......successful taper or not.

 

I'm glad the dental surgeon listened.  I had a anesthesiologist who listened too, back when I was on drugs still and got a colonoscopy.  I knew already then, that I was sensitive.  He was very reassuring, which helped, and I did do fine then with propofol.  Not used for dental procedures though.  Odd that he would leave it to you to decide........was he willing to give any input?

 

Alright, more questions than answers I know.  I trust you'll find the right answers and do wish to hear more as well.  Wisdom teeth extraction alone can be a bear, never mind while tapering, and having WD symptoms.  I feel for you.

 

L, P, H, and G,

mmt

 

 

Edited October 1, 2023 by manymoretodays

[6Eggs]

Hi, Thanks for the reply. That info was very helpful.

 

I have had penicillin class of antibiotics in the past before without issues, I think it was Amoxicillin ?

 

As per what my surgeion suspected, it's the other class of antibiotics that are no good, that is what a few members mentioned in the thread you linked me to.

 

I didn't know tramadol was a pain killer, I heard lots of bad things about it when I was on the PSSD forum.

I have no issues whatsoever with aspirin or paracetamol, in fact they work very well for me, normally I have great pain relief from a single tablet where most people need 2 or more to get the same effect.  Evidence that I am a poor metabolizer of drugs in general.

My surgeon said I will need something more substantial than those for pain.


I have actually been pretty good lately until a very bad reaction to the moclobemide last night that made me feel like I took an SSRI, high as a kite, everything was wobbling/moving and felt stuck, couldn't speak etc, I am still having visual disturbances, perception distortions etc... this morning from that. Not sure it it was an interaction from solvent exposure during the day or just coincidence?  I did have a migraine all day but I was very careful not to expose myself to cleaning solvents too much (was rebuilding a gearbox over 3 days). But I have had those migraines a lot since getting below 75mg of moclobemide. Other than the migraine I had no issues all day until I took my 5pm dose, then I was staggering to get to the house.

 

I am a week into the 10.5mg split. I found holding 4 weeks seems to do the trick and the pain and all the other stuff has pretty much gone or very mild, I am about 90% certain this was the tail end of the Rexulti acute WD stage or it finally leaving my system. I was told by my compounding pharmacist that Rexulti takes about 3-4 months to completely clear the body.  On my good days, during the day I am almost normal, I just crash every evening when I take the drug  

Even my sexual function has improved a lot in the last few weeks, and has changed in ways I have not experienced since WD, and in good ways.  But is almost completely lost in the evening after taking the drug which is making my sex life affected as it's generally the only time I get to be active with my partner, and I am really in the mood during morning and the day most days which is frustrating.

I can only get about 15% reductions compounded, the machines they use are starting to struggle to divide the doses in 10% or less now since the smallest tablet sold is 150mg.

What patterns I have noticed is a reduction triggers a paradoxical sensitivity to the drug itself. And I have to hold until it's severity reduces to be able to continue the taper.

 

[6Eggs]

Hi all,

2 weeks after the last post, it seems there are patterns to the Molobemide reductions now that the Rexulti has been out of the pic for a while, although there will be adjustments still happening probably for a while.

The visual dizziness and visual only virtigo has mostly settled, my sexual function is also starting to bounce back and I feel very aroused first thing in the morning, this has been happening a lot in the last 2 months I'd say, but only after the reduction period settles.

Mentally I feel pretty good at the moment, but still have some brain fog for only specific tasks, like admin type stuff.  As a electrical and mechanical field engineer, my on field hands on complex jobs are as sharp as a tack, my brain just nails tasks like that.

The one symptom that has me a bit concerned as it seems as far as I can recall, the visual noise and disturbances are the worst probably from the beginning of my journey with WD just over 2 years ago.

It's hard to look at details things and text due to the graininess and random grey bands with flickering colors that are between lines of text or anything that has 2 boundaries close together.  I do recall seeing these before but can't recall if it was well before WD during med use another time or during this WD journey.

 

It's soooo annoying.  I have had it all this time to a degree but it was all but completely resolved around the time I CT the Rexulti a number on months ago. It only got real bad 2 weeks ago and in some ways worse at the moment.
it is made much worse when I take my doses in the evening. I do recall having night time flashes and graininess when I was on the Moclobemide alone all those years ago which were accompanied by the brain zap like sensations that also gave a flash of white line when ever I turned my head or body in the dark with a jarring split sec vertigo like sensation.   So I err on side of this being a sensitivity/side effect of the Moclobemide itself and less of the WD, or maybe like my last post, more accurately a paradoxical reaction due to the WD.

As I write now, I have taken my first dose 1:45 ago and I keep seeing dark flashing waves when I look up at my monitor after looking at anything else dark.   This only happens during the dosing and few hours afterwards which leads to the assumption the drug itself is more to blame for the visual symptoms than the WD itself.

The burning pain has also followed the same patterns as the last reduction, no problems for the first week, by week 2 the pain returns like the same pain I had in the first few months of the Rexulti CT the first time 2 years ago, the pain changes to something else that doesn't bother me much and then it's just a mild intermittent funny sensation but not noticeable most of the time, a flare up happens most nights after the drug is taken.

My dreams, lack of, then intense nightmares, and then gradual normal dreams and some sexual dreams (have not had those in years in this frequency! A great sign!)

I guess I'll see what the next few weeks does, at least with the visual symptoms.

[manymoretodays]

Okay.  Sounds good enough 6Eggs.

Is the dental procedure history now?  Or upcoming?

 

Cheering you on!  You are in the home stretch now..........getting closer to the finish line!!!  Woohoo, rahrahrah!  LOL.  Confetti and cheers!  Cake?

(don't mind me, I just experienced an eclipse)

 

L,P,H, and G 🧙‍♀️

[6Eggs]

The dental surgery is coming up in Jan, I can move it around if I need.

I have a fair idea what to avoid and with the general anesthetic there were several recommendations on the links in the posts above that I know of the drug that seems to cause no problems for anyone in that thread. I will need to speak to the anesthetist prior to the surgery to discuss these things, this drug might not even be used here in Aus, but that's exactly why I need to speak to him before hand.

Still not sure on the pain killers though, I am pretty sure a opioid will be needed but I don't really know which one is the safest yet.  Can't have NSAIDs at all, that I already know. Can't really have benzos, can tolerate them but they aren't ideal.


As for how I am doing, some things are good other symptoms are really frustrating.  I am getting a lot of these crippling bouts of fatigue and muscle tightness, mainly around upper back and shoulder blades. I lived with this for years prior to the Rexulti, but now I know they are most likely a symptoms of the Moclobemide and prior to that, probably anxiety and stress. My partner gets exactly the same tightness and scoreless of the shoulder blades and neck when see is stressed from work.

But these bouts of it, are way way! worse than anything I had prior to the WD. So I attribute them to the Moclobemide itself as I had it chronically when I was on that alone prior to the Rexulti being added.

Having lots of bouts of visual vertigo too and nausea as well, worse tinnitus etc..., all these plus the visual noise and general unwell feeling are the same set of symptoms I would get from all SSRIs, and SNRIs causes additional body discomfort and pain as well as irritability.

All much like what I am experiencing now.


I didn't have time to add to the last post, but some of my sexual problems are newish, or at least a lot more persistent than I ever had during the whole WD and tapering.

These are weaker orgasm, I have had that maybe less than half a dozen times in the last 2 years, now I have it quite often in the last month or so, so is the significant reduced semen volume and ejaculation force, all of these symptoms were unaffected 99.9% of the time and in fact better than pre WD for the duration of the taper until recently.  It's deceiving as leading up to the moment of climax there is no hint that this is going to happen, so I feel disappointed when it does and self conscious.

My erections are getting better though which adds to this deception.

I vaguely recall when I was on moclobemide prior to the Rexulti, my sexual interest was well below average for me and orgasm, ejaculation was all pretty average in the bad sense but was a million times better than on any SSRI, that's for sure.

I know I have been saying it for ages now, the Rexulti countered much of the Moclobemide side effects while it was working and this state I am now, being quite a few months on Moclobemide in isolation feels a lot like this and a lot like when I was on it before ever starting Rexulti.


Hopefully and I do expect all these issues will go away after I get off the Moclobemide given some time.


Oh,   and I have been having tons of joint issues in the last few months, more so than at the beginning, now in my elbows, wrists and now my left shoulder.  I am 100% sure it's this drug causing these problems as well as my abdominal internal weight gain.   I had bouts of spontaneous weight loss during tapering when I held Rexulti stable and reduced Moclobemide, but this often relapsed as I continued with the Rexulti taper.   Kind of funny when I think about it, as Rexulti allowed me to gain weight for the first time in 10 years, I was very skinny when I was on the Moclobemide originally, but it seems the Mocbobemide is driving the weight gain now?

I have read many members have had physical joint issues during use and tapering of drugs, many report complete joint recovery after tapering and WD are completed.

[unblocktheplanet]

On 10/1/2022 at 1:54 PM, 6Eggs said:

I also discovered that even though I have had many batches compounded over the year, the last 3 or 4 all have the same expiry date which means they are using the same off the shelf packet to compound from.  I suspect my monthly batches are made from a single tablet as 1 is more than a month's worth.   All these variables, from the individual original tablets to the variation in my compounded capsules, there could be a significant amount of variation day to day and over the dosing period.

You are very fortunate to have access to a compounding chemist at an affordable cost. You may not be correct about the expiry dates. In Canada, compounded meds are legally required to expire after six months. Be well, 6.

[6Eggs]

20 hours ago, unblocktheplanet said:

You are very fortunate to have access to a compounding chemist at an affordable cost. You may not be correct about the expiry dates. In Canada, compounded meds are legally required to expire after six months. Be well, 6.

You're partially correct. It is 6 months for compounding here but if the retail drug is less than that, they change the compounded one to also be the same.

All my Moclobemide ones have been 6 months as it has a expiry of about 4 years for the retail packet.

The Rexulti is much shorter at 3-5 months, that's the retail packet.

[6Eggs]

Hey guys, the adverse reactions seem to be getting worse and I am quite worried. Like quite bad, lots of HPPD like symptoms, bright flashes of light and black, my entire skin is buzzing with nerve activity and I feel high and woozy and quite bad and wide spread muscle contractions and twitches.  My mental state is pretty good though surprisingly.

During the day I feel mostly fine other than the elevated visual noise over the norm. I was not able to get my normal GP yesterday and the one I saw yesterday wasn't much help and said I should see a psychiatrist 🙄 I feel time is of the essence here since these symptoms are escalating each night when I take the med, within minutes of taking them and amplified much more on the 2nd dose.

I had read a few threads that suggest this is a thing I might have to weigh up, WD vs the severity of the ADR? 

The WD from this are pretty acute but they normally don't last anymore than a few weeks, these ADR have been going on for months and like last time (2 years ago) got worse very quickly after CT the Rexulti.

I mean it seems like a no brainier to me, but before I do anything crazy I thought I'd get some opinions, obviously I am scared to CT but I am also scared of the ADR getting worse.  My managing GP has been telling me to CT from these lower doses for a while now and so has my partner as she can see the symptoms patterns and says I am torturing myself having to deal with ADR each and every night.

 

The Rexulti taper in hind sight was pretty straightforward and I did not have ADRs during the taper, in fact my symptoms improved as I did, but this Moclobemide is one ugly drug!

[manymoretodays]

Hi 6Eggs, sorry to hear it's been prolonged with symptoms.

10 hours ago, 6Eggs said:

I mean it seems like a no brainier to me, but before I do anything crazy I thought I'd get some opinions, obviously I am scared to CT but I am also scared of the ADR getting worse.  My managing GP has been telling me to CT from these lower doses for a while now and so has my partner as she can see the symptoms patterns and says I am torturing myself having to deal with ADR each and every night.

 

Usually ADR's or Adverse Reactions are going to improve with lower dosages.  So the toss up is if you are experiencing Rexulti WD symptoms, which is possible even well after the last traces are out of your body........or even Moclobemide withdrawal.

You might, if sure it's an adverse reaction from the Moclobemide, just go ahead and taper further, sooner than a full 4 weeks.  And see how that goes.  I would not go greater than 10% of 10.5 mg though.

 

I think CT could be worse.

 

Your days are going okay, which is good.  And IF adverse reaction, it should improve as you taper lower.  The sexual stuff will improve......stop keeping score, so to speak.......or rating every aspect of your performance there.  Get massages from your partner for the muscle aches.

 

I come up with 10% from 10.5 mg being 9 mg.    If you taper again, now I think it is just bordering on 4 weeks since September 23rd.

Then for your next taper, go ahead and try just waiting a 3 week interval.  Again I would not recommend CT. 

Your partner likely just can't stand to see you suffer and is commiserating the best they can, but I wouldn't risk a CT now.  After all your due diligence.  I mean you might wind re-medicated if symptoms were too tough.  I say go the distance.

 

That's my opinion.  This final stretch is tough, no doubt but I'm a little worried you might be rushing into doing something you later regret with a CT.  10.5 mg is still a decent dose.  Did you have the serotonin or other receptor saturation charts anywhere?  I thought you might have found some on Moclobemide.  Yes, it's a nasty but don't CT.

 

L, P, H, and G,

mmt

[6Eggs]

That's the thing, yes there WD but during the WD the ADRs as I take it each night worsens. 

100% the Rexulti would be a factor but as far as the symptoms I experienced during the first CT and then taper and subsequent CT, those symptoms have subsided as far as I'm concerned and there isn't too much that bothers me at this stage.

There is a very clear pattern that with each dosing I have ADRs which subside after the drug wears off, but if the ADRs are bad enough, it leaves lingering effects which then often get amplified by the next ADR. I feel that I am stuck in this loop at the moment.

Normally the WD of a Moclobemide reduction peak very quickly and 80-90% subside by the 3-5th week.  So do the ADRs to a degree, but this time they are escalating with each dose at night.

Last night it was that bad I had a full on LSD like trip, at least the best I understand it as I have never done any recreational drugs.   But the visual garbled kaleidoscope and complex geometrical light show I had last night was not only fascinating and beautiful, but extremely concerning and worrisome.

The skin and ear buzzing was very intense also, not to mention my whole body having muscle twitches like crazy all over.  The buzzing reduces and the twitches calm down by about 11pm but the HPPD like symptoms, mainly the extreme noise continues persistently now.  This is what I am worried about, if I keep having ADRs constantly, I am scared that recovering from the HPPD is going to be much harder?  

I actually feel really good other wise and my sexual function is definitely on the mend quite quickly, I have 95% normal erections currently and sexual desire a lot of the time, it does fluctuate but it's so much better compared to only a couple of months ago.  This is most prominent during the early morning and throughout the day, most often it's impaired as soon as I take the dosing.  This sexual function pattern has been going on for a while now which bodes to the ADRs at night.

The ADRs I am having are scarily similar to the ones I got when first starting any SSRIs, visual disturbances included, maybe not full on hallucinogen type visual stuff, but the lagging and trailing vision and light flashes and noise were a given when using SSRIs, that's at the lowest starting doses too!

 

 

Yes there is a tapering schedule for Moclobemide attached here.   In all of the schedules, it says to reduce by 5mg increments and the last 2 doses are always 10mg and then 5mg, then CT over 28 days.   Even if the slowest schedule is over 300 days, this last leg of the taper always seem quick in the document.  The other drugs they have documents for, doesn't CT at such a "high" dose nor reduce by such a last amount at the end.  

I am almost wondering if this is intentional for these reasons?   When I did  a kind of slide method for a month at the document's recommended 10% per week for the standard schedule, that actually worked well and avoided the ADRs entirely, but eventually the WD caught up but it's wasn't much worse than other WD periods I had in terms of duration but the hyperflexia, the brain/body shock dreams and jumpiness was enough just to go back the normal routine.

And yes! the ADRs reduce significantly when I reduce the drug at least at the start, and then they get abruptly very bad somewhere during the WD stage when holding the dose, but the ADR are magnitudes worse than the WD at this point and have for a while now.  That's what I mean, the WD aren't even that crazy and are short lived for the Moclobemide, but the ADRs really suck now!

All the tapering and receptor effect data is in this document. 

https://www.taperingstrip.com/download/moclobemide-aurorix/

It should be about 11-12% at this dose assuming a single dose, but my dose is split so the peak occupancy might actually be a lot lower as the drug is quickly metabolized due to it's very short half life before the 2nd dose is taken.

From research I have done, Moclobemide pharmacological action ceases after 16 hours in the CNS and has all but left the blood stream after 10 hours, this is for a single dose or sub-therapeutically doses.  Mocbolemide relies on liver enzyme saturation to effectively give bioaccumilation and steady bioavailability.

I very much doubt that's the case at such a low dose relatively speaking and my understanding is this starts to go out of the window at less than 300mg, which is the lowest daily dose recommended. 150mg boxes are the smallest available and state to take twice daily for that dose.

Also, another factor is I react badly to increasing the dose even slightly.  When I accidentally double dosed a few times or when I switched from self measuring to compounding and went to 18mg after being on 17ish. I felt ADRs flare significantly.

All of this seems like the perfect storm for kindling, right?

[6Eggs]

I ended up CT with the guidance of my managing GP.  The adverse reactions stopped instantly and I haven't seen an extreme flair up since, at least not the ADR symptoms I associated with the drug. 

But the symptoms are persisting, some gradual improvement but it seem more stable and slow compared to to the last several months.

 

There are withdrawals but it's more of the same type of stuff. Although I had a sleepiness and drowsiness for about 4-5 days straight that has lifted now.

Pain still comes and goes but not anywhere near as bad now and no more altered taste or metallic sensation in my mouth! Yay!.  Burning mouth is pretty much gone to the point I have to have a bad day and actually try to notice it.

 

Sexual function is a little better after it crashed the week before the CT, still not great, some loss of sensation, unstable glans erection, sometimes virtually recovered, sometimes not great but not completely terrible. Libido seems much more reactive than spontaneous.

Dry hands, legs and feet, sometimes the lower face, much like more than a year ago, but tolerable.

Sleep has improved, although I did have breathing stoppages, choking and general sleep apnea quite bad for the first week and that is slowly going away with generally good sleep and mild snoring.

Nightmares stopped as soon as CT, I was having nightmares for probably 3-4 months straight.

I have a neurologist appointment this Friday.

I'll keep you all updated.

[lemonsherbets]

Hi 6Eggs, how are you getting on after your CT? I have been experiencing escalating visual disturbances since stopping and reinstating an SSRI. I am unsure whether it is WD but feel more like it is ADR. I've been advised to taper.

[6Eggs]

I'm actually doing a lot better this week and feel like recovery is slowly but surely happening, albeit with the usual ups/downs.

Visual noise is still pretty evident and has improved a bit but not a huge amount.  It's worst mid afternoon and in low light, also moderately bad immediately after waking up but quickly settles.

Have had some visual disturbances where noise morphs into glitchy type artifacts, like a broken GPU on a computer but these are not that frequent and are often when I am tired in bed and also have other symptoms flare up.  Interestingly, there is no noise that I can notice when I completely close my eyes in the dark. The noise is when my brain/eyes try to interpret low levels of light.  Full sun there is also no noticeable issues.

But as for escalation and full blown LSD like hallucinations, they all stopped as soon as I CT.

The global white flashes have stopped too, had a few a week ago but in short bursts.

[lemonsherbets]

I'm so glad to hear you have improved. You mentioned patterns moving and light trailing,  have these got better? 

[6Eggs]

The light trailing stopped, I can't even remember that now. But the patterns are noise that looks like it moves in one direction rapidly when I look at a fine textured surface such as carpet at medium to low light.

It's mainly noise, or as they call it visual snow and I do still very slightly get the darker bands with flickering colours between rows of text, but I have to look hard, where when I was still on the Moclobemide prior to CT it was hard to read due to that being so intense.  It's similar to this illusion 

 

https://en.wikipedia.org/wiki/Grid_illusion

 

where you see the black dots but rather bands with some colour flickering.  Similar in the way when you look directly you don't seem them, but you do when your eyes move and not directly in the middle of your vision.

Apart from the visual stuff I am having a bad flare up of bad joint and back issue, bursitis, sore radiating deep lumba aching that radiates through to my lower tummy and testicles which are tender to touch.  When I have this, I get bursitis symptoms in both elbows, both shoulders, wrists, angles, knees, feet aches which are relatively new, had it several weeks to a few months ago. 

 

The back issues are the same on an off for no apparent reason since the whole WD thing and MRIs have ruled out any spine and back issues other than normal wear and tear for my age.  Also the ultrasound on my right anterior shoulder for the very painful "bursitis" didn't show anything, looked completely normal and no tears or injuries, even though it was an injury that triggered it, which was injured extremely easily as have all my joints since WB.

I have learned that MAO is in platelets and also used in pretty much all cells in the body, inducing collagen metabolism, mitochondria etc...

I have read many people on the forum have had physical body issues unrelated to the nervous system from these and related drugs, antipsychotics in particular.  They do resolve but take years.

I get these body wide muscular/joint/connective tissues issues in waves and all at once, not just one joint or spot at a time.  It does not seem to correlate with physical strain or work.

 

[6Eggs]

The joint, muscular and back issues and testicular pain have not really let up since the last update.

 

Sexual function is completely garbage at the moment as well.   Most of these joint and aching issues are from my waist down, some issues in my elbows and shoulders but nothing too bad or noticeable.

I had these lower body back and joint issues as some of the first WD symptoms back in 2021 which happened with the numbness in the lower body too.  Feels like a bad back injury, which I am sure these is some sort of physical issues going on with the connective tissue it seems but never shows up with any testing previously done.   I never had any history of joint or back problems other than muscle tightness/strain in the shoulder blades many years ago, not until it all hit me at once like a ton of bricks along with all the other WD symptoms.

The pain has improved some and I can do stuff but very debilitating and now it feels really odd, and have that odd feeling everywhere inside my body.

I tell you, these WD symptoms when you get waves truly are bazaar and make you 2nd guess everything.

Also, my worst wisdom tooth has got quite bad in the last 4 day with the throbbing like pain and inflammation, so my surgeon has moved the procedure to next Friday.  And the anaesthetist is calling me regarding the WD prior to discuss and work out a plan which is great.  I feel my chronically infected teeth have likely been contributing to my general poor health over the last 15 years without me even knowing ( no pain 99% of the time)  and this getting over and done with is only going to be a good thing.

[6Eggs]

Spoke to the anaesthetist and he was really good at explaining all the drugs used and adjusting to my needs.

 

He uses Propofol for the GA which everyone on here recommended and he has removed the anti-nausea drug which apparently works on 5HT system.

Pain killers are going to be paracetamol and nurofen which I did say I don't tolerate NSAIDs that well but I have not had any long lasting effects from them as far as I know.  But I will try just the paracetamol alone and see how I go since I respond extremely well to it, well above average.


If the pain is too unbearable, I will be given a script for codine but he said it's very unlikely I will need anything that strong and this was chosen as the other options targeted 5HT system which is a no no for me.

The antibiotics is amoxicillin which I recall using lots when I was younger without issues.


On other news, my symptoms lifted mostly but still got the aching an joint issues, all over now, at least with joints.  But the aching is still mostly in  my lower back, pevis and all my legs and testicles are still tender on the epidermis? bit, what ever it's called. The tube/cord bit at the back and bottom where they attach.

Sexual function returned in the last 2-3 days but has dropped off again today somewhat, not totally and has coincided with relapse in the joint and lower body aches, not debilitating but def worse than 3 days ago.
I also get random one off shoots of pain start one spot and propagate to another over a spit sec, similar to an electric shock but more like a kick in the nuts kind of pain.  I have had it randomly happen from my penis glans to my right buttock and foot to my knee, sometimes in my hands too to places on my back. Random stuff like that.

What my doc and myself thought might have been an infection/covid or similar, certainly does not feel like that now and I think this is just another one of those weird WD symptoms that is literally physical in the body as well as nervous system related.

[6Eggs]

Another update.

Surgery went extremely well!  I was given Propofol only and a does of dexamethasone for inflammation.   I woke up feeling better than when I came in and no nausea at all, the surgeon was trying to persuade me to take some anti nausea drugs to minimise risk of complications, but I declined as I knew they basically were a type of antipsychotic or at least related to them.

My anaesthetist had the same idea as me, minimal drugs and that worked out great!

As mentioned last time, I was suffering incredible joint and back, leg pain etc... and the testicles.  I speculated it was inflammation or something along those lines and had suspicion that it was WD related as my back was excruciatingly bad when I first CT rexulti over 2 years ago and was the reason they though initially a spinal injury.

Well... this is where things got interesting post surgery, that dexamethasone completely stopped all joint and aching pain, like 100% stopped it while it was active in my body and I felt mobility wise like a teen again.  So I think there might have been a hormonal issue during the WD, I know that moclobemide and rexulti affect certain pituitary hormones and I speculate that my hormones were out of whack during WD and post Moclobemide mainly, perhaps a lack of cortisol or desensitised to it?  My symptoms actually pretty well matched 2ndary Addison's disease, a condition where the hypothalamus/pituitary/adrenal axis is not working correctly.  I have a BIG history with pituitary dysfunction in the past, I don't know if I mentioned it here or not, but I suffered hypogonadism/hypopituitarism when I was 19. total loss of testosterone production for a few years for no apparent reason, some of the other hormones were out of whack too back then but not as bad.  I recovered spontaneously after a course of HRT.

Anyway, after the dexamethasone wore off (2-3 days), the pain and aching and reduced mobility came back.  But slowly it subsided and the waves got less intense, but other pains and symptoms emerged and now it's apparent that I have a delayed WD, much like the rexulti one over 2 years ago, dry hands, feet, and face, there was numbness in the groin and leg area, right leg felt weak and limp upon waking up, exactly the same as the rexulti back then, pain from pressure as a burnt/hot burning feeling, genitals, lower feet and legs, but this time also hands which is new.  Face and mouth also taste of CO2 and burning some what. Then the twitches were going crazy for several days. And one thing I have not had really since the original rexulti WD is the fearful startle when trying to go to sleep which lasts until like 2-3 am.   That last symptom is exactly the same, but not as intense and I know what it is now, so I can kind of tolerate it, ignore and I eventually fall asleep.

My sexual function started to come back in rather short waves, really good physically, not some much mentally, but then crash for a few to several days, then the next wave of good is great.  Just very frustrating one extreme to the other is well more extreme than usual,  either terrible, or awesome with little in between.

When I get the good waves, I have almost no soft glans, still a little iffy if I start and stop. Then when it crashes, it's pretty terrible, but I also feel terrible in general, head noise and in the ears, body feels yuk and altered sensation. I get easily overwhelmed sensory wise.  Moods are not the best in these bad waves, but not catastrophic which is promising.

Also, should have mentioned it further up, but my delayed WD from the CT of the Moclobemide happened a week before the surgery and I was in a deep dark black hole of despair for quite a few days, and physically felt like death. I had the surgery the day after feeling my worst, I just don't know how I just pulled myself together and went to such a big thing as a surgery like it was nothing. I think my mind was so exhausted from all the crap, the surgery seemed like something fun oddly, and it did make me feel better! Like a bit of a reset I suppose and weight off my shoulders as the wisdoms have been causing me more grief that I really realised.

My surgeon was surprised by how dense my bone is and also said I was healing twice as fast as someone my age (36) and I was apparently healing at the rate of a typical late teen or early 20s person.  This actually gave me hope that my body has more capacity for recovery than I have given it credit for, I just hope this also can translate to the CNS too.

Post surgery I managed to get away with panadol and ibuprofen for the pain, and I found a min of one of each every 6-12 hours a day for 3 days got me through.

In isolation they didn't work so great for this pain, but at the same time I was 90% pain free.  I also found that post Moclobemide, I am now sensitive to panadol and the ibuprofen, well I already knew that makes me high, and it did, but now I can add panadol to that list now haha.

2 other things have happened since the last update that are not related but kinda of a big deal, the company I worked for on and off for years has gone down the toilet and made half of use engineers redundant 1 month ago, the 2nd is I have covid on top of a bad wave of the WD atm, but the covid is much nicer that WD in my opinion, also the first time ever I have tested positive despite knowing I had it several times already just by the symptoms and exposure history (waves gone through work, everyone got sick at the same time kind of thing, same symptoms etc...)

Lastly, my visual noise issue got worse again during this delayed WD, not crazy bad like the ADR from the Moclobemide, but a regression in recovery. But the last few days it seems to have improved and surpassed it's last state prior to that.  As I am writing this, I can barely see those weird grey bands between the text which also had flickering rainbow colours.   It's kind of there but I have to really concentrate to see the subtle hint that they are still there.  I can see the night sky again as it mostly should look, and not a hot mess of speckles that I find hard to tell from faint real stars and just noise.


Well, until the next update, take care everyone.



 

[6Eggs]

Small update.

 

The covid got bad pretty quick and we all got very sick, my partner is still unwell nearly 4 weeks later. We all are to some degree.  This strain was many times worse than any of the previous times  have had it.

 

The WD symptoms got a lot worse in the last few weeks too, but it's impossible to tell what is just bad covid or WD symptoms but I have pretty much 95% recovered from the covid as far as I can tell but still having some quite bad neurological symptoms.

It's odd how they can be so delayed, even with a drug with a 2 hour half life.  So it seems that my body just does this delayed and relenting WD regardless of the drugs profile 🤷‍♂️

At least the WD symptoms I know for sure are mostly different to the Rexulti ones, I get some very similar but I feel very odd in my body most of the time and the visual lag or more like a jerkiness type of dizziness is super annoying, but my partner has this too, but like me she has a few things going on including starting lexapro which could be contributing, she had a very bad work burnout that landed her in hospital.  Which is very much like my past circumstances.

Anyway, not much fun but the patterns of the CT of the Rexulti are similar even if the symptoms are different mostly.

So at least I have a good idea that in 12-18 months it should be a lot better, I hope lol.

I am still having lots of problems with my joints and lower back, aching testicles and now intermittently after covid my eyes ache too, but I have had quite a few bad migraines since so it could be that, but I had frozen eye muscles and extreme aching as the worst covid symptoms during the acute stage.

So in the next week or two I am going to ask my doc to do my bloods and looks at the inflammatory stuff as well as asking for him to screen my hormones and pituitary ones, in particular the adrenal ones and this aching and bad joint pain can be a symptom of low cortisol and I have a big history with pituitary and fatigue issues.

[6Eggs]

Haven't updated in some months now, just focusing my little energy on getting through one day at a time.

I had my blood tests come back ages ago but never updated the post on the results, they were outstanding! not that I never had any problems with the results but these are the best I have seen since my early 20s.  There was no issues to explain the inflammation type symptoms I was having.


Anyway, things have been terrible to be honest. I indeed have fallen into very much the same type of delayed and protracted WD.

I am still having quite severe paresthesia type pain pretty much most days, only decent relief on my good days.

My symptoms are more typical of the AD type WD, the whole up and down bi-polar like good and then deep depressive states, but I think they are very slowly getting less severe each time, but barely different from the last. But when I think back to say 6 weeks ago, there def has been some improvement.

My visual distortion improved somewhat and the things I was seeing between text are apparently called auras from people that suffer HPPD have named that exact symptom.

But the kicker is, my visual snow and contrast issues are the worst I have seen them (no pun) and they are really affecting my everyday, I just can't seen detail or anything at all for the matter in darker areas or on dark objects.   These symptoms have not lifted the slightest and are relentless. I have inverted visual after images and trailing which is super annoying, these two symptoms are actually something I got from prozac as a side effect that never entirely went away but I was always on something since then, so not sure if it was a continuation of the side effect or a permanent symptom after taking prozac.

When all this visual stuff got suddenly worse, I also experienced hearing loss and very bad tinnitus, exactly the same like I got months after the first CT of Rexulti, this has mostly resolved but I still have tinnitus coming and going all the time and other weird tinnitus related symptoms like light and touch induced tinnitus loudness and tone changes.  All part of this broken sensory integration, perception and filtering in the brain I guess.

I also had reoccurrence of right side body weakness and loss of fine coordination, usually occurred during sleep and lingered some time after waking. I also felt weird on that side, like my body wasn't there properly.  This was a distinct line straight down the middle of my body that experienced these weird symptom, even my face was not able to move in sync with the other side and that side felt foreign.

My SD symptoms got bad too, mostly very bad pain and PE like I never had before and ED along side, it was relentless for weeks at a time with only small breaks, it had improved a lot in the recent weeks but still bad during the waves. Soft glans is still a issue and can fluctuate dramatically in a short duration but overall it's a lot better!  I have probably more ED than last year but the erections are more uniform and on the good days I'd say it's almost indistinguishable from my original norm.  But currently my waves are like 60-80% of the time with the remainder either good windows or just ok ones.

As for the inflammation like symptoms, I now believe there is some immune or cellular function type disruption as I am experiencing wirey hair and hair loss, the same as the side effect I got from sodium valproate.

Quick google, and indeed ADs have an effect on immune signalising and have anti-inflammatory effects, so I suppose chronic use of them and then quitting could cause a rebound like inflammation similar to how cortical steroid chronic use causes very high amounts of inflammation and the resulting symptoms using WD of said steroids.  I have a close family member who went through exactly this and result was dermatitis and hair loss that didn't start to resolved until 9 months after discontinuation and is still having anxiety attacks years later which was one of the worst symptoms I was told.

There is an association of both hair growth and loss from AD, and is quite well studied. Who knew!

An interesting and good thing is that I have been a few months free of tremor and fine motor control issues which were worst in my hands. I had this for years and put it down to an age thing, but it was the drugs the whole time.

Also, the whole numbness hasn't really been an issue, had a little bits here any there but not like 2 nearly 3 years ago and when I do get numbness it's short lived, most of it was during the weird right side body presumably partial seizures or maybe migraine?  Oh did I mention migraines! I've had lots of them and even short  fraction of a sec migraines that are like a railway spike being hammered through the roof of my mouth out through my temple, so painful I appear to just randomly scream for a few sec from outsiders looking at me.  The ocular ones are really nasty too, often only last mere seconds and come in waves for minutes to over a day or more and are triggered by light.   These are associated with other odd entoptic visual symptoms.

Each and everyday, my symptoms change some and this has been a constant trend since I got off all the drugs. Some symptoms are the same as I had before but overall, the combo and the feeling of it all is different and evolving every single day and I see this as my CNS and body making changes to get back to a functioning state.  This can only be a good thing.