TL1802: one year later, looking for some recommendations

[TL1802]

Wow, ok, so how to keep this short and simply while maintaining details. 

 

I was on 10mg of Viibryd for 9 months + 2 months of taper from September 2018 through July 2019. I was on half of minimum recommended maintenance dose of 20mg because after 10 days, the 10mg was high effective and my doctor is someone who is very conservative with medications. I was on the medication for depression due to a loss compounded by my career taking a scary hit. I had "agitated depression".

 

Taper was totally uneventful - maybe a brain zap here or there when falling asleep. Nothing more.

 

3.5 months later, at the start of December 2019, I suddenly was hit with symptoms. First, it started with intense skin sensitivity where everything that I wore felt like an itchy wool sweater. This worsened to include stinging sensations which made me very restless, almost 24/7. At worst, it felt like I had a bad sunburn (feeling the sharp pain of skin cell nerve damage), and at best it felt like my skin was just uncomfortable. I always feel my skin to be there and requiring to be touched/rubbed to be soothed. Sometimes, it also feels like my skin is dry even though it isn't. Lastly, I have plenty of days where it feels like my skin is on fire. While the stinging has subsided for the most part, the other sensations continue.

 

Unfortunately, these are not the worst of my symptoms. I've developed other debilitating symptoms which include days long sessions of jitteriness. It feels like I have had way too much coffee, and at times, I can feel my jaw chattering. I also get tingling in my head and upper spine that sometimes feels like tickling and this also lasts days. Sometimes the tingling is so bad, that I take a vibrating massager and hold it to the back of my neck to vibrate my brain, which temporarily soothes the tingling. All of this is of course accompanied by restlessness. I just want to squirm, either to relieve skin sensations or because I am jittery. A couple of times, the restlessness has gotten so bad that I felt like I was going to explode out of my body.

 

I live in NYC and have access to really great doctors through my mother, but no one has really been able to help. I have had a brain MRI which showed no issues. I have had a skin biopsy, which was also clear (no signs of nerve damage). I have also had approximately 2 dozen blood tests checking for everything from hormone levels, to mast cell activation, to toxicity - all normal. Lastly, I have tried many medications, none of which hit the spot. Gabapentin for skin sensations was not useful at low doses and caused its own side effects. Valium/Xanax help with restlessness but not with jitteriness and skin sensations. Propranolol helps with jitteriness but not with the other symptoms. Low dose buspirone helped with the skin sensations but was not effective otherwise.

 

My doctor does not deny that there could be a biochemical issue as a result of the Viibryd, but says we have to treat this as anxiety, regardless of the cause. The one thing we haven't tried is reinstatement, but it's now been 13 months, and she is against that. The symptoms are definitely getting worse not better.

 

Any ideas? Thank you all! 

 

 

[DataGuy]

Hi @TL1802, welcome to SA.

 

I'm sorry you've been suffering for so many months. It sounds like you have a case of withdrawal syndrome from Viibryd. Your symptoms are fairly typical for what people experience in withdrawal, albeit with a delayed onset. I don't know how much you have read on the site, but your taper was fairly rapid given your length of usage. Rapid tapers are more likely to result in withdrawal symptoms and lead to a protracted post-withdrawal syndrome. 

 

As for reinstating, we never know for any individual case, but this many months out from your jump, it usually does more harm than good. Here is an information thread on reinstating if you are considering it.

 

The best thing I can recommend is to learn to cope with your withdrawal symptoms without further medication usage. We have a section on non-drug coping techniques, where you may find something useful to help ease your discomfort.

 

I agree with your doctor's claim that this needs to be treated as anxiety, however, I would use only non-drug treatments for anxiety to cope with it. You may be surprised to find these behavioral techniques ease symptoms that appear as if they are not related to anxiety at all.  The reason I recommend against further prescriptions to treat the withdrawal syndrome is that most drugs are only approved for one use, most are only very marginally effective even for that one condition, and choosing random drugs to treat these withdrawal symptoms is likely to do more harm than good. Most drugs he suggests are likely to be psychotropics, all of which can potentially cause further problems and come with their own withdrawal syndromes. 

 

If you are interested in trying supplements, we generally only recommend a couple: magnesium and / or fish oil. Magnesium is a calcium channel blocker and can provide mild anxiolytic effects, while fish oil seems to help the withdrawal syndrome through some unknown mechanism. 

 

As for how long this will last, it really depends on the individual and is impossible to predict. It can be months or years. I know this is not what anyone wants to hear, but as of yet there is not really any magical cure other than time. If you are interested in reading further about the condition, here is a thread with links to a few academic articles on the topic that provide some evidence for the withdrawal syndrome as well as typical symptoms.

 

If you could summarize your withdrawal history in your signature, as shown in this link, this will help anyone who wants to help see your drug history and make it easier to answer any questions you may have. This link will take you straight to your signature.

 

Again, sorry you have had to go through this. We'd be happy to answer any further questions.

 

 

Edited August 17, 2020 by DataGuy

[TL1802]

My neurologist did suggest that I try 1mg of Viibryd, saying a dose that low wouldn't cause issues but that if there is receptor hypersensitivity, it could help. I have been too scared to do so.

 

What's super interesting is that my symptoms are getting worse as time goes on. I'm sure there's the compounding effect of actual anxiety and despair from the symptoms, but who knows. 

[DataGuy]

That is an interesting comment from a neurologist. Generally the withdrawal results in nervous system sensitivity (presumably due to receptor sensitization), which is why we recommend very low doses for reinstating. Too large of a reinstatement dose can cause an adverse reaction. Withdrawal seems to make adverse reactions more common, again likely due to the same issue. In some cases, the sensitization is so strong that people will have adverse reactions to almost any drug they take, including the one they cold-turkey'd or rapid tapered. This happened to me with diazepam. Reinstatement was impossible. This is actually mentioned in a at least one academic article, but they don't really have any detailed explanation as to why. The medical community is still in the very early stages of learning about this. 

 

Symptoms do typically continue to get worse until they reach a nadir after a cold turkey or rapid taper. It creates a bit of a storm in the nervous system, where all of the sudden the level of neurotransmitters it was used to are missing, and the system struggles to find an equilibrium. In the case of Vilazodone, I believe the 5-HT1A receptors will need to upregulate to stabilize the system, this after becoming downregulated due to excessive stimulation from the drug (assuming I'm reading the correct pharmacology information). Taking other drugs, especially powerful sedatives like Xanax, may interfere with your nervous system's ability to return to normal. Xanax is also neurotoxic, as it appears many (if not all) sedatives are, from my recent reading. See this article on drug induced apoptosis. Why or how the entire system becomes sensitized, it is hard to say, but an acquired brain injury is a possibility. This is mostly speculative, so take it with a grain of salt. I am not a doctor, and the nervous system is still a pretty big mystery, which is why I think the best advice is to let your body heal itself and avoid experimenting with medications which were not made to treat your condition. If it is a brain injury, the body can heal from that. It just takes quite a bit of time. 

 

 

[DataGuy]

Here is one article which mentions that the introduction of a drug, even the same drug, may worsen the syndrome. Not necessarily in every case, but the probability seems to increase. I think it's a good sign that you were able to tolerate most of the drugs you have tried, but I would take that as a positive sign for the state of your nervous system, rather than an invitation to try more medications. 

 

"It is one thing to reintroduce an antidepressant after a drug-free period if relapse has occurred. It is another thing to do so if withdrawal has ensued: we should be aware that, by doing this, we are simply postponing, and most likely aggravating, the problem. Tolerance does not necessarily develop to a specific drug but may occur as a reaction to particular effects of a drug, which may be shared by medications of the same class.17 As a result, if we administer an antidepressant, regardless of whether it is the same or a different one, we may worsen the state of behavioral toxicity that is associated with withdrawal phenomena as well as other manifestations of oppositional tolerance.30"

 

Probably the best thing you can do is learn as much as possible. You are going to need to make quite a few important decisions for yourself without much expert guidance. Withdrawal syndromes have only started to appear in the academic literature and it usually takes around 17 years for new knowledge to enter clinical practice. You could also bring articles like this one into the neurologist to see what he thinks if you don't feel comfortable reading them yourself. 

[TL1802]

Thanks for sharing all of this. Also, I should have noted that I have read many of the guides on this website and have a medical background. That hasn't helped me much practically, but at least I have been able to understand most of what I have read. I don't put too much weight on research about apoptosis, dematuration of neurons, etc., but that's more of a choice than a scientific opinion. I am working with the head of neurology at the 2nd best neurology department in the US, so I've had someone to bounce ideas off of. He has been a proponent of taking my life into my own hands away from psychiatry - he's gone as far as to call psychiatrists clinicians who are afraid of being sued. Anyway, he seems to strongly believe that a 1mg dose of the original drug (1/10th) won't create issues and will quickly be able to point to receptor hypersensitivity (I believe he means excess upregulation due to discontinuation after a state of downregulation, but I never actually asked if this is what he means).

 

I have some evidence of hypersensitivity. Busprione which is a 5HT1a agonist and CBD oil which acts similarly both provide relief from my skin symptoms. However, I also can't shake it out of my head that the worsening of my other symptoms (the tingling, jitteriness, etc.) worsened due to the use of either or both of these. But then again, it's important to note that 5HT1a agonists on their own lower serotonin at first before desensitizing autoreceptors, so reinstating Viibryd which is both a 5HT1a agonist and SSRI could produce different results. But I am indecision paralysis. 13 months is a long time and I'm exhausted.

 

I am not too concerned about "as needed" drugs like benzodiazepines or beta blockers, as long as they aren't used for more than 2-4 weeks, but maybe I am wrong. At this point, it's impossible to tell if I have worsened my condition with the use of busprione or even with the as needed drugs like Xanax, or if this is all the progression of the withdrawal.

 

My biggest fear is that time will not heal. That this is some sort of homeostasis with upregualted receptors or what not.

[DataGuy]

Ok, thanks @TL1802,

 

I'm glad you found the site. You have a big leg up on everyone else, most of who have no scientific background and no friendly doctor to work with (let alone a top specialist). Many doctors will simply deny the problem because they are afraid of being sued, which really precludes them from being helpful to the patient. (I shudder to think what the outcomes are for people with poor educational backgrounds who continually try quack treatments to fix their problem). 

 

I think the contempt your neurologist has for psychiatry is well-earned. As far as I know, none of their treatments are life-saving (despite claims to the contrary). I'm not aware of any drugs they prescribe which show an all-cause mortality reduction in randomized controlled trials, but I can't say I have looked at every one. At least the major classes as a whole (benzos, antidepressants, antipsychotics) show know mortality risk reduction, and actually seem to increase mortality risk in the medium to long run. I honestly think that if the withdrawal phase was included in the original RCTs, most of these drugs would have never been approved, failing to show even a surrogate (HAM-D or other) benefit. As it stands the absolute average benefit is something like 2 pts on the HAM-D (a 54 point scale). This may also explain why psychiatrists have one of the highest suicide rates of any professional group (could also be explained by the fact that people with mental health problems tend to go into psychiatry, but I don't think that lets them totally off the hook). 

 

I'm curious as to why you think the neuroapoptosis research is not relevant? I think it would be great if problems caused by these drugs were simply due to receptor changes, but if that were the case, a few months usage followed by rapid withdrawal would not be capable of causing problems that lasted for more than a year (which seems possible, you can take a look around the site at people's cases). At least to me, this makes little sense without some level of brain injury. Have you had a neuropsychological exam? Do you know your baseline cognitive performance? This may be a useful test to have. I know there has been research on benzodiazepine withdrawal showing neuropsychological impairment that lasts for years after stopping the drug.

 

I'm very happy you have a background in medical research. In that case you should know that reasoning from biological basics is usually useless in predicting whether some treatment will work (most drugs entering RCTs are bioplausible, but most fail). Really it is the empirical results of a large study that will tell you whether a drug is "effective", but most - even if they are approved - are only effective for "surrogate" outcomes like rating scales for pain, depression, cholesterol readings, blood pressure readings etc. and don't actually improve health (reduce the risk of all-cause mortality). I think you want to do your best to protect your health from further injury by drugs. Of course that is no guarantee you will get better, but on a probability basis, it seems much better than trying random drugs to try and correct receptor imbalances which have never been demonstrated to improve health even for the handful of conditions they have been approved to treat. By trying various psych drugs for uses which they were never approved for, you are taking a large risk with little expected benefit (think of what the probability is that a random drug will improve health for a random unknown condition). 

 

At this point I really think you need to do some more reading to determine your best course of action before trying any further treatments. I think it's very likely you would have had progress had you not tried all the different psychotropics. For example, I had much heavier usage (multiple drugs), but stopped getting worse around the 3 month mark. I also had a rapid taper. I would hold off on treatments and have a little faith in your biology. You can run this by the neurologist and see what he thinks. I really hope you stick around and share what you find, what treatments you try and whether they work or not (people try many treatments here and almost none of them work and often make people worse). I'd like to reassure you that even if you try some strange cocktail of drugs, you will probably still get better, although it may take quite a bit longer if it worsens the injury. Most people do get better, although it is possible to muck things up and you are at a stage where you are in a bit of danger of doing that, but I think your background should really help you avoid the worst mistakes.

 

I hope I haven't said anything too stupid : ) and I hope to connect with you later. Let me know if you are interested in references for things I've mentioned here and I can try to dig them up. 

Edited August 18, 2020 by DataGuy

[DataGuy]

I'd also be interested in hearing your doctor's exact reasoning for suggesting the treatments he did, if you remember. And btw, I really appreciate your detailed and precise descriptions : )

Edited August 18, 2020 by DataGuy

[Altostrata]

Hello, TL.

 

Since you went off Viibryd, have you had alcohol, antibiotics, or other neuroactive agents? Are you taking any other drugs? Please supply your drug history in your signature, as requested.

 

On 8/17/2020 at 2:07 PM, TL1802 said:

My neurologist did suggest that I try 1mg of Viibryd, saying a dose that low wouldn't cause issues but that if there is receptor hypersensitivity, it could help. I have been too scared to do so.

 

What's super interesting is that my symptoms are getting worse as time goes on. I'm sure there's the compounding effect of actual anxiety and despair from the symptoms, but who knows. 

 

A pretty good guess with reasoning in the right ballpark.

 

21 hours ago, DataGuy said:

Here is one article which mentions that the introduction of a drug, even the same drug, may worsen the syndrome. Not necessarily in every case, but the probability seems to increase. I think it's a good sign that you were able to tolerate most of the drugs you have tried, but I would take that as a positive sign for the state of your nervous system, rather than an invitation to try more medications. 

 

"It is one thing to reintroduce an antidepressant after a drug-free period if relapse has occurred. It is another thing to do so if withdrawal has ensued: we should be aware that, by doing this, we are simply postponing, and most likely aggravating, the problem. Tolerance does not necessarily develop to a specific drug but may occur as a reaction to particular effects of a drug, which may be shared by medications of the same class.17 As a result, if we administer an antidepressant, regardless of whether it is the same or a different one, we may worsen the state of behavioral toxicity that is associated with withdrawal phenomena as well as other manifestations of oppositional tolerance.30"

 

....

 

I knew it was Fava. He's referring to "normal" dosages of drugs, which is usually what they do for reinstatement -- if not much larger dosages. This can trigger a nervous system sensitized by withdrawal.

 

18 hours ago, TL1802 said:

Thanks for sharing all of this. Also, I should have noted that I have read many of the guides on this website and have a medical background. That hasn't helped me much practically, but at least I have been able to understand most of what I have read. I don't put too much weight on research about apoptosis, dematuration of neurons, etc., but that's more of a choice than a scientific opinion. I am working with the head of neurology at the 2nd best neurology department in the US, so I've had someone to bounce ideas off of. He has been a proponent of taking my life into my own hands away from psychiatry - he's gone as far as to call psychiatrists clinicians who are afraid of being sued. Anyway, he seems to strongly believe that a 1mg dose of the original drug (1/10th) won't create issues and will quickly be able to point to receptor hypersensitivity (I believe he means excess upregulation due to discontinuation after a state of downregulation, but I never actually asked if this is what he means).

 

I have some evidence of hypersensitivity. Busprione which is a 5HT1a agonist and CBD oil which acts similarly both provide relief from my skin symptoms. However, I also can't shake it out of my head that the worsening of my other symptoms (the tingling, jitteriness, etc.) worsened due to the use of either or both of these. But then again, it's important to note that 5HT1a agonists on their own lower serotonin at first before desensitizing autoreceptors, so reinstating Viibryd which is both a 5HT1a agonist and SSRI could produce different results. But I am indecision paralysis. 13 months is a long time and I'm exhausted.

 

I am not too concerned about "as needed" drugs like benzodiazepines or beta blockers, as long as they aren't used for more than 2-4 weeks, but maybe I am wrong. At this point, it's impossible to tell if I have worsened my condition with the use of busprione or even with the as needed drugs like Xanax, or if this is all the progression of the withdrawal.

 

My biggest fear is that time will not heal. That this is some sort of homeostasis with upregualted receptors or what not.

 

Thanks for reading the guides. Why aren't you taking a little buspirone or CBD, if you've already found out they help?

 

I would not get fixated on correcting any particular receptors. Whatever works, works.

[TL1802]

Therapeutic for jitteriness and head tingling/tickling

 

I’ve had 3 main symptoms that have been unrelenting for over 13 months and have brought me to tears many times. However, I have finally found a therapeutic for 2 of them.

 

Occasional benzo use (low or even moderate doses) had been unsuccessful in treating any of my symptoms. However, the lowest dose of extended release propranolol which carries no risk of dependency and doesn’t lead to any adaptive changes to your nervous system like serotonin modulators, has worked wonders on jitters and tingling. I initially tried dosing 10 and 20mg at time of symptoms, but this wasn’t sufficient, probably because once your nervous system is irritated, it’s quite difficult to calm it down. The ER version of the medication has worked wonders in keep symptoms at bay.
 

I don’t know when my system will actually heal given it has been 13 months, but this is finally something that works to mask 2 out of 3 of my debilitating symptoms.

 

If I could only find something to relieve and mask the burning and stinging skin sensations...

 

Edited August 25, 2020 by ChessieCat
added topic title

[ChessieCat]

burning-skin-burning-feet

 

paresthesia-pins-needles-numbness-tingling-burning-sensations-aka-neuropathy

 

symptoms-burning-brain

 

 

 

[Shelton]

On 8/17/2020 at 10:50 PM, TL1802 said:

Thanks for sharing all of this. Also, I should have noted that I have read many of the guides on this website and have a medical background. That hasn't helped me much practically, but at least I have been able to understand most of what I have read. I don't put too much weight on research about apoptosis, dematuration of neurons, etc., but that's more of a choice than a scientific opinion. I am working with the head of neurology at the 2nd best neurology department in the US, so I've had someone to bounce ideas off of. He has been a proponent of taking my life into my own hands away from psychiatry - he's gone as far as to call psychiatrists clinicians who are afraid of being sued. Anyway, he seems to strongly believe that a 1mg dose of the original drug (1/10th) won't create issues and will quickly be able to point to receptor hypersensitivity (I believe he means excess upregulation due to discontinuation after a state of downregulation, but I never actually asked if this is what he means).

 

I have some evidence of hypersensitivity. Busprione which is a 5HT1a agonist and CBD oil which acts similarly both provide relief from my skin symptoms. However, I also can't shake it out of my head that the worsening of my other symptoms (the tingling, jitteriness, etc.) worsened due to the use of either or both of these. But then again, it's important to note that 5HT1a agonists on their own lower serotonin at first before desensitizing autoreceptors, so reinstating Viibryd which is both a 5HT1a agonist and SSRI could produce different results. But I am indecision paralysis. 13 months is a long time and I'm exhausted.

 

I am not too concerned about "as needed" drugs like benzodiazepines or beta blockers, as long as they aren't used for more than 2-4 weeks, but maybe I am wrong. At this point, it's impossible to tell if I have worsened my condition with the use of busprione or even with the as needed drugs like Xanax, or if this is all the progression of the withdrawal.

 

My biggest fear is that time will not heal. That this is some sort of homeostasis with upregualted receptors or what not.

Hey TL1802!

 

Curious as to how you’re doing with reinstatement at 1mg and Buspirone/Propranolol?

 

I just reinstated 1.25mg Lexapro - it’s helped flu like symptoms but having serious cortisol spikes and severe “neuro anxiety” that is unbearable. 
 

If this doesn’t ease off in the next week or so, my doc wants to put me on Buspirone (tried for 2 days prior to reinstatement and it helped anxiety without needing a benzo) but I’m scared for my next steps. 

[TL1802]

After additional discussion with my psychiatrist, I did not reinstate the 1mg

 

I am taking 60 mg ER propranolol which helps significantly with jitteriness and brain sensations. Skin sensations have subsided recently, so crossing my fingers that they stay that way after 8 grueling months. I have had 2 nights in total over 20 nights of pretty bad Parasomnias though. This is brand new and almost certainly a side effect of propranolol. 

 

I also get 1-2 nights per week of intense restlessness for which I take 2.5mg of Xanax though I am trying to stop it and fight through it. This is has been an ongoing symptom of anxiety.

[Altostrata]

How are you doing, TL?

 

To help us out, follow these instructions Please put your drug and withdrawal history in your signature You may need to use a computer to do this.

 

[ChessieCat]

TL posted this elsewhere.  Quoting here for member's history:

 

5 hours ago, TL1802 said:

 

I am doing decently better, though still on propranolol 80mg ER (low dose). The propranolol was never meant for the paresthesia and more for the brain tingling/tickling + feeling of jitteriness/brain tremor + headache. This has become my main symptom now. The stinging and itching skin sensations have come down to 2 to 3 days per month and seem to be resolving, finally after 11 months since onset and 14 months since discontinuation. 

 

 

[manymoretodays]

Hi TL1802,

 

On 11/21/2020 at 4:26 PM, Altostrata said:

How are you doing, TL?

 

To help us out, follow these instructions Please put your drug and withdrawal history in your signature You may need to use a computer to do this.

 

 

On 9/10/2020 at 7:54 PM, TL1802 said:

I also get 1-2 nights per week of intense restlessness for which I take 2.5mg of Xanax though I am trying to stop it and fight through it. This is has been an ongoing symptom of anxiety.

 

Here, I'll pull the signature instructions/information out of the above link.

Putting a SHORT version of your recent history of reducing or discontinuing drugs in your signature helps people understand your context when they read your posts.

 

Your signature appears under all your posts.

 

Staff needs this information to answer your questions. In your signature, we need to see

- Exactly what you're taking now, with dosages and when you started each drug

- What you were taking before, with dosages and start and stop dates

 

As the signature is limited to 12 lines, we expect you will condense your drug history. The last few years usually will do.

 

FOR READABILITY, SHORT LINES ARE BEST.

• A list is easier to understand than one or multiple paragraphs
• Include ALL drugs, doses, and dates (starting and stopping)
• Any drugs prior to 24 months ago can just be listed with start and stop years
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• Spell out months (e.g. "January" or "Jan" as 9/1/2016 can be interpreted as 9 Jan 2016 or 1 Sept 2016)
• Please leave out symptoms and diagnoses

 

Example:

2001–2002 paroxetine 
2003  citalopram 
2004  paroxetine
2008  paroxetine slow taper down to 2016 Aug off paroxetine
2016  citalopram May 20mg  Oct slow taper down
2018  citalopram 13 Feb 4.6mg 15 Mar 4.4mg 29 Apr 4.2mg

 

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It's best done, the signature from a PC.  And then just ask, if you are having difficulties with this.

 

Are you still using the Xanax, and if so, how often?

 

I don't think that 80 mg of propranolol is a particularly low dose.  After my arrival here, I too, took propranolol once, and I think I cut in half a 10 mg tablet, so took only 5 mg.  It was a short acting form, that I had been prescribed for prn use, at some point.  I chose not to continue that, as when I came in here, I was on 2 medications, that I was seeking help to get off of.

 

Here's what we've got, in case you have not found these topics yet: 

Beta Blockers: Propranolol, Metapropol, Atenolol, etc.

 

Akathisia vs restlessness, anxiety, agitation

it is mentioned in the 4th paragraph down, in the first post ^

 

And then it is a drug which should be cautiously tapered, so that you don't get very sick, and our harm reduction model below:

Why taper by 10% of my dosage?

 

Tapering Beta Blockers or Alpha Blockers

 

Okay and best, please ask if you need further help getting the signature done.

 

And best, Love, peace, healing, and growth,

manymoretodays(mmt)

 

 

[TL1802]

6 hours ago, manymoretodays said:

Are you still using the Xanax, and if so, how often?

 

I don't think that 80 mg of propranolol is a particularly low dose.  After my arrival here, I too, took propranolol once, and I think I cut in half a 10 mg tablet, so took only 5 mg.  It was a short acting form, that I had been prescribed for prn use, at some point.  I chose not to continue that, as when I came in here, I was on 2 medications, that I was seeking help to get off of.

 

 

I take .5mg of Xanax once or twice per month, at night, to assist in falling asleep if I happen to be extra activated on that day.

 

80mg of propranolol ER is the lowest possible dose in ER form. Some pharmacies carry the 60mg but 80mg is commonly stocked as the lowest ER dose. 120-160mg is the minimal therapeutic dose for hypertension, tremors, etc. I guess one could argue that 10mg immediate release, taken 4x per day, could be an even lower dose. I just don’t want to deal with dosing 4 times per day, though.

[Altostrata]

On 11/23/2020 at 9:09 AM, TL1802 said:

 

I am doing decently better, though still on propranolol 80mg ER (low dose). The propranolol was never meant for the paresthesia and more for the brain tingling/tickling + feeling of jitteriness/brain tremor + headache. This has become my main symptom now. The stinging and itching skin sensations have come down to 2 to 3 days per month and seem to be resolving, finally after 11 months since onset and 14 months since discontinuation. 

 

 

This sounds like your symptoms are very gradually going away, which is what we expect of withdrawal syndrome.

 

Before further discussion, please enter your drug history in your signature, see Create Your Signature in "Account Settings". 
 

[Ariel]

@TL1802

 

47 minutes ago, TL1802 said:

Hello all - I wanted to pop back in here and provide an update. I'm hoping that extra information and another viewpoint can be beneficial to some.

 

I think a lot of us are primed to point fingers at antidepressants, think they are poisons, and then connect everything that happens to us back to the antidepressant. I think forums like this where stories are shared and the bias of positive reinforcement (others coming on and saying "yes, this is exactly what happened to me") leads to this. I was definitely a victim of this mentality and narrow sightedness, to the point that I sent angry emails to my psychiatrist and fired her for "ruining my life and my body". We need to remember that correlation is not causation. We also need to realize that tens of millions of people are coming off of antidepressants at any give moment, and that with such a large group of people, there are naturally going to be illnesses that coincidentally pop up at the same time, unrelated to the discontinuation. 

 

I began suffering from paresthesias 3 months after discontinuation (an 8 week taper off of 10mg of Viibryd that I was on for 12 months). I had pinpricking, stinging, and itching sensations all over my body that lasted for over 2 years (they still appear from cold weather and stress). I had unexplained jitteriness and head tremors that lasted for over 1 year (they occasionally appear at night if I am suffering from significant insomnia). I would often wake up in the middle of the night with a swarm unbearable tingling all over the surface of my brain (this resolved after 2 years). I lost most sexual function which has only partially returned. My skin has been severely dry and I do not sweat from my arms or legs. I had frequent bouts of akathisia that were so severe that I wanted to rip my flesh off my body (this resolved after 1.5 years but I still get some restlessness). I also had severe brain fog for the first 6 months. I still have insomnia where I wake up after 4-5 hours and need to stay awake for another 1-2 hours before going back to sleep.

 

Very recently, after 2 years, some new symptoms began to appear: loss of hair on my legs, knee and ankle aches and stiffness, and tachycardia when standing up. All of this undeniably points to small fiber neuropathy, which was supposed to have been ruled out after multiple neuro exams and even a skin biopsy to count nerve fibers. My new neuromuscular specialist said that the biopsies are only 60% sensitive and that I am 100% clinically diagnosable. This lead us to order special antibody tests only available at 4 or 5 labs in the entire world (all common antibody tests had been coming in normal for the past 2 years). We got the results, and I surprise, had very elevated antibodies for TS-HDS and Plexin D1, both known to be most associated with small fiber neuropathy.

 

The kicker to the story is that the doctor and I went back to the start of my symptoms and discussed what was going on in detail. We uncovered that I had gone through a really rough case of the flu (not COVID as it was 2019) about 3 weeks before the start of my symptoms, and it's likely that this was EBV, colloquially know as Mono, which is known to cause immune dysregulation and progressive small fiber neuropathy.

 

Long story short, what I thought was protracted withdrawal this whole time likely had nothing to do with antidepressants.

 

Thank you for posting your update, which I've read with great interest.

It sounds like you fought hard to get competent medical care and finally got the time and attention you deserve. Good on you for hangin' in there.  

 

I wish you had a comprehensive drug signature in your profile so I could learn about your medication history. 

 

Isn't it possible that your experience could be due to both EBV and WD/PWS, and or the two coinciding? Both of these conditions can cause complications on their own, of course, but any illness during WD can hit extra hard and significantly exacerbate nervous system instability/sensitivity. Something like this happened to me (though I cannot claim to ever have gotten to the bottom of it). 

 

How are you feeling these days?

I'm sorry you've been going through this long ordeal and hope you're on the mend. 

 

Well wishes, 

A. 

[Ariel]

On 11/24/2020 at 11:31 PM, Altostrata said:

Before further discussion, please enter your drug history in your signature, see Create Your Signature in "Account Settings". 

 

I agree with Altostrata, please do create your drug signature.

As an SA member I always pay attention to other members' drug signatures. I learn a lot from reading them and they are frequently also a source of support as it helps me feel less alone in having had my drug carousel experience.