☼ Kittygiggles: generic Prozac (fluoxetine), stabilization

[Kittygiggles]

I've had a lot going on and I am planning to respond properly but I wanted to drop by to say thank you very much Altostrata and Happy2Heal for your input and that I've decided not to increase the speed of my withdrawal. I have been thinking very carefully about everything you both said. I hope to get around to posting soon. I hope you are both well.

[TreeElf]

Hey kittygiggles, I just wanted to chime in and echo the above. From all my tapering and past withdrawals with Prozac, one thing I really needed to learn was patience. I had that whole 'I need this out of my system' thing for ages, and the sense of urgency creates more tension and anxiety. Also, with Prozac, I never really have withdrawal symptoms until at least 2 months after I've dropped. It literally takes ages, and then I have a severe crash that is incredibly damaging. I saw this as an opportunity to change how I relate to these thoughts - there is no rush, because everything happens in its right time anyway, regardless of how much we thrash about and insist we want it all fixed now. I understand that physical problems are also fueling this sense of urgency, but try to remember that stress is the primary cause of disease, at its root, and if you encounter more stress from being desperate to get off it, these problems will worsen too. I'm a 'fixer' too, so I get it. But please take a few moments to objectively observe the situation, without needing to rush, because I really wouldn't want to see you crash after a too fast taper. Wishing you all the best x

[Kittygiggles]

Warning

I don't expect anyone to read any of this post (and the next two) and I don't expect any responses. I think it was important to write it though because it might clarify my position on some things which I haven't yet expressed properly. Thanks again to anyone reading this thread and to those who have responded.

 

Preface

I don't expect anyone visiting here to read through my entire thread, let alone retain anything I've written so I hope it is okay to repeat myself. I'm referring mostly to the fluoxetine commencement, continuation, and discontinuation (aka withdrawal) symptoms that have afflicted me. So, although not exhaustive, here is the list of the most relevant symptoms:

 

Continuation:

* extreme lethargy and excessive sleep (which began within 24 hours of taking fluoxetine and has remained ever since. It's a very sad thing for me to write because it is a reminder of the years wasted whilst I was in this all but useless state.)

* anxiety (yes, iatrogenic anxiety, over and above the anxiety disorder I was prescribed this useless drug for)

* depression

* brain fog

* minor visual disturbances (colors, flashes)

* peripheral neuropathy-like symptoms in hands, arms, and feet

* poor peripheral circulation

* fluctuating platelet function (aggregation, then subsequent chronic dispersion, as well as increased size)

* nausea

* abdominal bloating

* secondary hypothyroidism: I cannot prove fluoxetine is to blame for this yet but there is evidence to support a significant probability (and I would argue from anecdotal evidence that it is a high one), that it is a significant if not primary cause. Endocrine disruption is devastating: I will not list the symptoms of hypothyroidism here, many people think they are aware of them but there is evidence that the number of symptoms proven to be caused by hypothyroidism can be measured with three digits; yes, three!

 

Discontinuation (aka withdrawal)

* intense irritability

* brain zaps (along with minor visual disturbances, such as colors and flashes)

* brain fog

* intense dizziness and vertigo

* intense headaches

* akathisia (legs, jaw, and neck)

* nausea

 

I make daily diary entries about my psychological and physical health, I used to do this as part of CBT years ago and it wasn't much work. Since having discontinuation syndrome it became my lifeline to document every symptom; thankfully, I now have a working model of how withdrawal affects me versus continuation symptoms, as well as normal life events and illnesses. Maintaining the diary is a lot of hard work but ironically, it saves a lot of time and reduces stress considerably, because any symptom is dealt with in minutes. When fluoxetine is gone, there is a strong chance that the symptoms above will hopefully diminish to nothing, making the diary a tiny commitment that can go back to the way it was before fluoxetine took hold and after discovering CBT: something I'd write in only occasionally because most of the time, I was healthy and happy!

 

On 7/24/2018 at 8:44 PM, Altostrata said:

You may indeed be experiencing the effects of fluoxetine at sub-1mg doses, but such low doses do not have the same influence on disease promotion or drug-drug interactions. In my opinion, you are probably making yourself anxious unnecessarily about the low dose of fluoxetine you are taking.

 

Hi again, Altostrata, I just want to echo what I said in my last post: thank you for responding. What you wrote above makes sense, considering the common, observable fact that many drugs have a positive correlation between the symptoms they cause and the dose at which they are taken. I hope this applies to SSRIs, in particular, fluoxetine at sub-1mg doses, as I think most SA members and anyone else trying to withdraw from this drug family have suffered the consequences of withdrawing too quickly from such tiny amounts. Thankfully, it is getting increasingly prevalent that the pharmaceutical industry and the psychiatric profession have grossly understated the potency of SSRIs at low doses.

 

On 7/24/2018 at 8:44 PM, Altostrata said:

In my opinion, you are probably making yourself anxious unnecessarily about the low dose of fluoxetine you are taking.

 

 

I appreciate the implication that the lower my dose, the lower its effect, again, I think although it is positive, it is wishful thinking sadly. I am calm about this situation, despite how horrible it is; I am not anxious. My knowledge and practice of CBT has given me all but complete control over my anxiety disorders. I would instead interpret my recent posts as indicative of stress, although I would say that it is at a subdued level because my dominant state of mind is a zealous determination to identify the root causes of my various health issues; almost all of which began not too long after taking fluoxetine. If I am wrong about fluoxetine in whole or part, I will just move on to the next probable cause. I am open-minded about my health, and I accept that ultimately, I may never find an answer. However, until I have ruled out probable causes, I think it would be irresponsible to not investigate why I have health problems. Not doing so would be a form of learned helplessness and armed with CBT, I will never give in to that morbid state.

 

A pleasant consequence of the reduction of fluoxetine in my system is that my personality is resurfacing; it includes an aptitude for dispassionate investigation and discourse. Whether one can enjoy something done dispassionately or not, I leave to someone else who has an aptitude for linguistics and philosophy to determine!

 

On 7/24/2018 at 8:44 PM, Altostrata said:

"Damage" from fluoxetine is reversible, we see such recovery occurring slowly over time. So little is known about its effects on endocrine systems etc., no one can tell you if that is reversible. If you have autoimmune hypothyroidism, that can go into remission for that have not been defined.

 

 

I appreciate the term damage is ambiguous and its connotation in the context of withdrawal could be damaging; therefore I'll substitute it for 'symptoms'. I would agree that it is clear that some (maybe all) commencement, continuation, and discontinuation symptoms are reversible. With so many variables and the intrinsic complexity of any organism's function, let alone a human's (which, arguably, contains the most complex structure we know of), defining a generalized and conclusive SSRI recovery model is still a blurry prospect.

 

We are far from a full picture of fluoxetine's effect on the endocrine system. However, my interest is in the pituitary and thyroid glands. Studies (1, 2) completed on rats (poor things) have demonstrated an adverse effect of fluoxetine on TSH, reverse T3 (via the type 3 deiodinase isoenzyme), and T4. As far as I can tell, such studies were not repeated in humans due to the influence of fluoxetine's status as a widely prescribed therapeutic drug. There are more sources that add some data to support this theory, and consequently, the hypothesis that fluoxetine is a cause of thyroid dysfunction.

 

Suffice to say, funding for studies demonstrating the harmful effects of SSRIs is probably hard to come by. Sites like SA and increasing awareness will hopefully, at the very least, shed light on the existing studies that demonstrate the danger of discontinuation syndrome and perhaps increase funding to help those who want to stop taking SSRIs.

 

Sadly, I do not have unfettered access to scientific studies, so I am often in the position of exploration via abstracts. My time researching such things is limited, moreover, I am not particularly interested in medicine, physiology, and biochemistry, so my motivation is almost entirely based on necessity!

 

On 7/24/2018 at 8:44 PM, Altostrata said:

However, if you have other health issues, removing fluoxetine altogether from your drug burden simplifies that somewhat.

 

 

I think the simplification would be profound, as there is no doubt that fluoxetine's continuation symptoms reduce my quality of life dramatically.

 

On 7/24/2018 at 8:44 PM, Altostrata said:

I can't tell you if accelerating your tapering will have any long-term health benefit. I suspect not. If you are getting withdrawal symptoms when you reduce at 2% per week, you will get them if you reduce at 4% per week.

 

I agree completely and after some careful thought, as well as your feedback, I have decided to stick to my withdrawal schedule thus far (0.66% every ~2.33 days). I will not accelerate it. The benefit of reducing the schedule by 8 weeks or fewer is not quantifiable and on the face of it, unlikely to be anything but damaging.

 

On 7/24/2018 at 8:44 PM, Altostrata said:

By the way, our tapering protocol recommends a 10% reduction per month on the current dosage, not the original dosage. If you are calculating a 2% reduction per week based on original dosage, you have steepened your taper curve -- which may be why you're having problems. If so, if I were you, I'd stop tapering immediately and let your nervous system settle down.

 

I have been aware of this from the onset of my withdrawal journey and I think I expressed early in the thread that I am doing a linear taper. I appreciate that it is ill-advised and comes with a higher risk of more intense or a greater number of discontinuation symptoms. My experience with stabilization, and identifying the periods from changing my dose to the onset of an adverse consequence, made me realise that tapering frequently, in small increments (up to 0.66% of the original dose) worked best for my brain.

 

As I have progressed along this withdrawal regimen, my discontinuation symptoms have decreased proportionally, which has been wonderful to behold: longer windows and shorter waves! I hope this continues and it precludes me from holding but I am going to consider slowing down at 20% even if discontinuation symptoms continue to diminish linearly, due to the exponential decline in serotonin transporter occupancy. At the first sign of discontinuation symptoms (an unusually long and/or intense wave), I will hold and consider a slight updose, reversing about up to ~2 weeks of reduction (which seems to be my period of experiencing an adverse response to rapid reduction).

 

On 7/24/2018 at 8:44 PM, Altostrata said:

I am wondering if the symptoms you attribute to fluoxetine toxicity might not be symptoms from reducing it too fast. Do they occur in any daily pattern?

 

As I mention in the preface above, the lines between continuation symptoms and discontinuation symptoms in my case are clearly drawn. I can see no good reason to conflate them, especially when there is no evidence to support that perspective. Other than the rather benign (relatively) symptoms of nausea and brain fog, there are no discontinuation symptoms that existed prior to my uninformed withdrawal attempts a few years ago. So to consider my continuation symptoms as a consequence of discontinuation doesn't make much sense.

 

I appreciate that Glenmullen's list is likely still growing, but because my continuation symptoms occurred before I withdrew, it rules them out completely, no? Or maybe I'm missing something, which is likely, because I'm not yet my old cognizant self from before taking fluoxetine. I have always considered that my presentation of withdrawal symptoms can change to include continuation symptoms but that seems like a remote possibility based on the data I've gathered. Thank you for your responses thus far, I consider myself fortunate to be able to discuss this with you. Don't worry though, I won't expect it every time I post

 

1. A. Baumgartner, M. Dubeyoko, A. Campos-Barros, M. Eravci, and H. Meinhold, “Subchronic administration of fluoxetine to rats affects triiodothyronine production and deiodination in regions of the cortex and in the limbic forebrain,” Brain Research, vol. 635, no. 1-2, pp. 68–74, 1994.

2. Jacqueline Golstein, Serge Schreiber, Brigitte Velkeniers, Luc Vanhaelst, "Effect of fluoxetine, a serotonin reuptake inhibitor, on the pituitary-thyroid axis in rat", European Journal of Pharmacology, Volume 91, Issues 2–3, 22 July 1983, Pages 239-243.

[Kittygiggles]

 

On 7/24/2018 at 10:15 PM, Happy2Heal said:

I've been following this discussion because of my interest in thyroid disease (my mother had it and my previous dr felt that I was at high risk for it, so I was continually being tested for it- I'm fine. I have several "pre cancerous" thyroid nodules which, it turns out, are extremely common and very rarely turn to cancer and even if they do, thyroid cancer is very easily treated/cured, I believe- except in very rare cases)

 

I don't recall all the sources of that info since I've long ago put the issue to rest in my own mind.

 

Hi Happy2Heal, I appreciate you trying to reassure me, it is very kind, thank you. Well, I hope you can forgive me for addressing this issue that you put to rest but you did bring it up! Don't worry about recalling sources, I assume most people discussing things on SA have done a reasonable amount of research when discussing things. We're all on the same side, trying to clean up the SSRI mess!

 

I agree with your summation of thyroid nodules. There is very strong evidence that over half the population in the developed world (I believe it is not the whole world, I can't recall either) will develop thyroid nodules in their lifetime. Calling them precancerous may be a misnomer, as it implies they require treatment to prevent malignancy - they usually don't but it is important to scan them (via ultrasound (US)) about twice in a lifetime, just to be sure. Anyway, it sounds like you've had ultrasounds, which enable excellent diagnoses and predictions based on the sonographic features of each nodule. A US-guided FNAbiopsy is useful too but often not needed for most nodules, and even if it is prescribed, it isn't usually a cause for alarm.

 

Of course, nodules are tumors but only up to 10% of them turn out to be malignant, with significant correlation to thyroid disease, in particular, the thyroglobulin antibody. Even if they become cancerous, it is almost always indolent and as I mentioned earlier, some oncologists argue it's the 'best' cancer to have. I am so glad that you have no thyroid problems, it's not a nice thing to experience!

 

On 7/24/2018 at 10:15 PM, Happy2Heal said:

However I'm studying the role of diet and the environment on health in general and I keep coming across discussions of endocrine disrupting chemicals,

because rates of disease involving endocrine disorders are apparently skyrocketing; so scientists are trying to figure out why.

 

there doesn't seem to be any clear cut answers, but given the number of articles and studies being done, my  *guess* is that there are a LOT of potential factors involved in thyroid dysfunction....

 

so until more/better info is available, it seems a bit premature perhaps? to be leaning too heavily into blaming the fluoxetine...?

 

 

 

 I don't think it is premature, as I mentioned in one of my recent posts:

 

"I have looked at other causes of my hypothyroidism:-

 

* chemical toxins (other sources of fluoride, mercury, past use of isotretinoin etc)

* pathogens (H. Pylori, EBV, etc)

* food intolerances (gluten, dairy, soy, etc)

* psychosomatic indigestion (from stress, anxiety, depression etc)

 

Yet, having addressed almost all of the above, particularly the dietary and mental health part, the most likely culprit is fluoxetine. "

 

I concede that I have only ever really presented the case that fluoxetine is to blame here, so it's probably the only way I was going to be perceived! I don't really go into the other causes I am investigating, my overall health profile and risk factors for thyroid disease, because this is SA and I would consider a detailed discussion of thyroid disease to be inappropriate here. There is undoubtedly a link between endocrine disruption and fluoxetine, so I think it is justified in expressing and exploring this hypothesis here in the context of my withdrawal journey.

 

On 7/24/2018 at 10:15 PM, Happy2Heal said:

a small sample of the links on this subject (note they involve all diff endocrine disorders not just thyroid)

https://www.niehs.nih.gov/health/topics/agents/endocrine/index.cfm

 

http://www.who.int/ceh/risks/cehemerging2/en/

 

https://www.nrdc.org/stories/9-ways-avoid-hormone-disrupting-chemicals

 

Autoimmune thyroiditis and other autoimmune disorders can often be linked to a pathogen, toxin, and/or psychosomatic element. Consequently, I live a very natural life now (no processed food at all, natural toiletries), thanks to research like the sources you provided above. I read them all and it matches what I learned previously: our environments in the developed world are toxic. They are covered with many manufactured objects yet it would be a miserable life to have to avoid all such entities. A reasonable and time-efficient approach is warranted; taking anything to an extreme is rarely healthy or helpful.

 

I tend to focus on toxins that have sufficient evidence to support an adverse consequence of daily use and/or proximity. The ubiquity of fluoxetine (and other SSRIs), as well as other drugs, toiletries, and foods, coupled with their easy pathways to our bloodstream via ingestion or topical use, makes them highly likely to be a primary cause of symptoms. To what extent such toxicity influences illness is unclear because it affects people differently, depending on their genetics, age, general health (physical and psychological), type of toxin, duration of exposure, lifestyle, etc.

 

However, as I mentioned earlier, I don't really care much for this multi-disciplinary subject, I just take as much time as I need to understand what may help me, and then focus on enjoying my life! I will keep exploring fluoxetine and other drugs and toxins as probable causes until I find evidence to the contrary.

 

On 7/24/2018 at 10:15 PM, Happy2Heal said:

Kittygiggles, I'd really hate to see your symptoms get a lot worse from a too fast taper, esp when it may not be necessary.

 

Thank you, I agree completely, so I have decided not to accelerate my currently working withdrawal regimen.

 

On 7/24/2018 at 10:15 PM, Happy2Heal said:

Believe me, I understand wanting to get the drug out of your system as quickly as you can. It just seems like a big risk to take, without, I think, sufficient proof that it's causing you the kind of damage you fear.

 

 

Yes, that want creates a sense of urgency that is hard to ignore or not act upon. However, I have succeeded at keeping it subdued once again, with a resolve not to accelerate until I reach 0mg, unless something absolutely catastrophic happens of course! I disagree with the notion that it hasn't caused the kind of damage I fear, such as hypothyroidism, and all the symptoms above, which should be avoided by any person wanting a functional and healthy life. Perhaps you are referring to the fear of having malignant tumors, in which case you are probably right. In that case, I agree with you: the risks of withdrawing faster now would outweigh any benefit, which there may be none over and above the benefit experienced after the proper conclusion of my current withdrawal schedule.  

 

Thank you again for contributing, it was very helpful!

 

[Kittygiggles]

 

On 7/26/2018 at 3:48 PM, AbbyElfie said:

Hey kittygiggles, I just wanted to chime in and echo the above. From all my tapering and past withdrawals with Prozac, one thing I really needed to learn was patience. I had that whole 'I need this out of my system' thing for ages, and the sense of urgency creates more tension and anxiety.

 

Thank you AbbyElfie for your response. I agree that withdrawal cannot be completed successfully without patience but in my opinion one does need insight as a counterbalance to ensure that one doesn't prolong the process unnecessarily. That is a fine art though and erring on the side of caution is the best strategy, which is why I will not accelerate my current withdrawal regimen.

 

On 7/26/2018 at 3:48 PM, AbbyElfie said:

Also, with Prozac, I never really have withdrawal symptoms until at least 2 months after I've dropped. It literally takes ages, and then I have a severe crash that is incredibly damaging.

 

 

I am sorry you experienced this; it's a horrible surprise to have such a delayed reaction. I am fortunate in that my reaction period seems to be very fast, despite the fact of fluoxetine's relatively longer half life, it is something that surprised me and damaged me a great deal in the beginning. In my case I would get a reaction within 24 hours if I had made a very significant drop in dose, with lesser (yet still too large) drops taking up to 2 weeks to materialize. I am thankful for it though because it makes managing changes easier and I get to see the benefits of doing so much faster. I can only imagine what having to wait 2 months for a reaction is like but it sounds nightmarish. Once again, I am sorry for your plight.  

 

On 7/26/2018 at 3:48 PM, AbbyElfie said:

I saw this as an opportunity to change how I relate to these thoughts - there is no rush, because everything happens in its right time anyway, regardless of how much we thrash about and insist we want it all fixed now.

 

 

Yes! Changing how we respond to such thoughts is the answer to modifying our behavior. In my case, I am not thrashing about and insisting on an immediate solution (which I admit I did my fair share of a couple of years ago when I first encountered discontinuation syndrome) but focused on managing the continuation symptoms of fluoxetine.

 

On 7/26/2018 at 3:48 PM, AbbyElfie said:

I understand that physical problems are also fueling this sense of urgency, but try to remember that stress is the primary cause of disease, at its root, and if you encounter more stress from being desperate to get off it, these problems will worsen too.

 

 

I suspect you mean that stress is a variable coefficient on the impact of almost all diseases. Whether it is a cause depends on the disease but it is demonstrably false that it is a primary cause of all disease; for an apt example, take discontinuation syndrome! However, I agree with your sentiment: stress reduction is arguably one of the most important steps to staying healthy and reducing or preventing disease. Now, if only we could all manage it perfectly! I am using CBT to manage my own stress but I will admit I am terrible at it but I attribute that to a lack of diligence on my part.

 

On 7/26/2018 at 3:48 PM, AbbyElfie said:

I'm a 'fixer' too, so I get it. But please take a few moments to objectively observe the situation, without needing to rush, because I really wouldn't want to see you crash after a too fast taper. Wishing you all the best x

 

 

 

Without falling into the trap of learned helplessness of course, doing nothing is so often an elegant yet difficult approach to master, which can lead to profoundly helpful results. As a fixer, I had to trick myself into believing that doing nothing is sometimes a form of fixing things Thank you for your kind words, I wish you all the best too; I am happier now that I have resolved to be patient yet again. 

[TreeElf]

Hi kittygiggles, sounds like you're doing all the right things and have the best attitude for recovery. I totally get you with the whole fixing thing and reminding ourselves that sometimes doing nothing is a part of the fixing! I do this thing when I'm in a bad state where I find it really hard to surrender due to anxiety, fear etc, and I try to remember that healing will 'sneak' in when I'm out of my own way, so it's like I trick my mind into recovery by acknowledging that and letting it happen in the background. It's almost a withdrawal induced survival technique.

 

As you say, everyone's chemistry is so different, so having symptoms quicker after a drop may be a good sign that your body recognises it asap and gets into healing mode. By stress being the root cause, I guess I mean that disease in itself is a form of stress. Whether it's physical, mental, digestive, etc...it's a form of distress. I try to be mindful of that when approaching anything that I think will help, so my mind stays as balanced as possible. Not so easy in practice, I have days where that is just impossible.

 

Glad you are headed in the right direction. It helps me to know that the body and brain are designed to heal by nature, so even when we have setbacks we're still always moving even slowly towards healing. Wishing you all the best, let us know how things go x

[Kittygiggles]

On 8/2/2018 at 2:48 PM, AbbyElfie said:

I try to remember that healing will 'sneak' in when I'm out of my own way...It helps me to know that the body and brain are designed to heal by nature, so even when we have setbacks we're still always moving even slowly towards healing. Wishing you all the best, let us know how things go x

Thank you, I loved your response but in particular what you said above highlighted two critical things that I have yet to master but when I can manage them, they help me immensely: getting out of one's own way and remembering that setbacks are a part of recovery, which the body and brain are always trying to accomplish. The peace of mind this brings is in itself a wonderful remedy for stress and mental strain. 

 

I will always update this thread; like you I use it to vent! I have been doing well and there have been no significant nor unusual waves yet, so fingers crossed that it continues. I am expecting some but certainly not dwelling on that possibility. 

 

I read your latest post in your thread but I admit I've not your entire thread yet, which I may get around to. I too moved to the countryside at a young age, I was diagnosed with OCD many years ago (but several years too late) but have managed to recover with CBT; I get the obsession of being 'mad, bad, and dangerous to know' all too well!  The fluoxetine did nothing but make things worse.

 

Again, like you, I quickly learned that being isolated by virtue of rural or sparsely populated areas can result in an abundance of introspection; whether this is unfettered and too extreme at a younger age is something I am not sure of because in my childhood I grew up in a remote location too. I then moved to cities but in my late twenties, moved to even more remote locales, and being in my thirties now I can confirm it has definitely led to a lot of philosophical questioning. I am a complete atheist (100%) but I appreciate that humans, or at least I, perhaps feel the need to be connected to something wiser than myself. My spiritual affection has always been for the wild and free animals and plants around me: brambles, nettles, thistles, bluebells, daisies, beetles, hornets, bats, dormice, dandelions, garlic, strawberries, raspberries, plum trees, apple trees, spiders, lizards, birds, flies, wasps, bees, butterflies, moths, centipedes, mice, rats, shrews, deer, and of course, my murderous feline huntress! I am lucky to share the land around my house with them. It is an 'unweeded garden' and a sanctuary 'that grows to seed'. Unlike Hamlet and the many denizens of this region, I see it as utterly beautiful and magnificent, dense with vegetation and creatures, ripe with decay and vitality. Anything untouched by man yields perpetually a bounty of wisdom and marvels. 

 

Well that's enough florid verbosity from me for one night! I blame rediscovering Vangelis' 1492 compositions for all my blabbering!

[TreeElf]

Wow that's a beautiful description! It's definitely how I've begun to relate to nature in the last year, simply connecting to it in this way is one of the best ways for people to be with something bigger or higher than themselves. Especially for those of us brought up in atheist homes, spirituality to me is definitely a subjective experience and personal to each individual. 

 

Great to hear you're doing well, hoping it continues x

[Kittygiggles]

Withdrawal update - now at 15% of my original dose

As discussed above, I didn't speed up my reduction rate, for which I am glad. I had one wave that wasn't out of the ordinary but unpleasant nonetheless. It lasted about a day, which is a normal duration and it was variable within that period. I am very cautious about proceeding at this speed but without evidence that withdrawal symptoms are worsening and/or reappearing, I can't really justify slowing down. I am probably being hypervigilant for signs of withdrawal getting worse so if it happens, I will hold or updose by a week or two within 24 or 48 hours of noticing them. I hope my luck holds and I can just keep doing these tiny drops three times a week. 

 

Thyroid ultrasound

I am one of the lucky few to have had a false positive on an adenoma/nodule. My first scan, which was done a few years ago was incorrect and done on inferior equipment so erring on the side of caution, I imagine, the radiologist identified normal tissue as a nodule. So all my concerns about having one and the low risks associated with it were all irrelevant as I never had one in the first place! It was a great relief and I still can't believe my luck. It gives me more time to discover the cause of my hypothyroidism, which is, thanks to new tests and the scan, almost certainly autoimmune (as most cases are but mine was misdiagnosed by the endocrinologist). 

 

Canker sores and throat irritation - a possible result of liquid fluoxetine, withdrawal, or just a fact of life?

For much of this year, every two or three weeks I have developed one or two canker sores (ulcers) towards the back of my mouth and in my throat. They are pretty standard and range from mild annoyances to moderately painful. I can live with them. My oral hygiene is excellent (flossing and brushing daily with no dental problems and having a diet free of refined sugar) and I don't smoke or drink yet these viral lesions persist. I decided to see the doctor about them after months of trying different toothpastes and not using it altogether, using coconut oil or just water instead, as well as eliminating certain foods, I couldn't really break this almost monthly pattern. They usually last up to a week and then just vanish without a trace (again, typical behavior for canker sores).

 

I'm the type of person to get canker sores, having had them as a child, probably due to my neurotic nature combined with some genetic factor perhaps. The doctor said my throat looked normal, my current canker sore, although fairly large, looked normal, said she would order some blood tests but there would likely be no discernible cause as often tests come back normal. So, as I await the results I thought I would ask:

 

Has anyone noticed an increase in their sore throats / canker sores, since consuming their SSRI in liquid form? I doubt this is a cause but it is the only change I have experienced this year, other than perhaps stress, and of course a reduction in fluoxetine. I drink at least a liter of water during and after taking my nightly dose of fluoxetine and as the dose reduces, the concentration of the drug is therefore diminished, consequently any possible irritants are further diluted and would be less likely to cause problems. 

 

I suspect it is likely a problem caused by sub-optimal hypothyroidism treatment, withdrawal, or just stress. I just thought I would ask in case someone else has discovered this. 

 

[Kittygiggles]

What next? How to reduce harm now I'm at 10% (2mg)?

Hi everyone, I am doing okay. I've now reached 10% doing a linear microtaper. I am proud of the progress. Preceding the taper was a 10-month reinstatement and stabilization period at 20mg. I've had no significant waves and no new problems for most of this year. It has gone well, perhaps too well...

 

Which is now making me nervous, as I am hypervigilant for signs of withdrawal syndrome reemerging with old or a new set of symptoms. It has shaken my confidence as what I have done has been a risky microtaper but on the whole, a fairly linear 2-year journey. Had I done a reduction of 10% of the last dose each month instead of my current taper, I would be at around 6.4mg right now, instead of 2mg. This means I've gone too fast for the harm reduction method but I have had no adverse effects to show for it yet; perhaps they are coming and I will pay the price soon enough.

 

Instead of being greedy, I have decided to hold at 10% (2mg) for the moment. I don't know how long for, maybe days, maybe weeks. However, if I were to reduce by 10% of the last dose from now on, it would take me another ~5 months to reach 1mg, and another ~28 months, to reach 0.1mg. 

 

In light of the fact that my taper has, on the whole, gone very well, does anyone have any recommendations about what speed to adopt at this point or after a short hold?

 

As always, the goal is to balance time with harm reduction. I feel there must be a compromise that lies between my microtaper and taking the 210 weeks needed to complete the harm reduction method (i.e. going from 20mg to 0.1mg at 10% of the last dose each month). Whatever speed is suggested, I will of course divide it across 3 reductions each week, as my brain seems to do very well microtapering. 

 

If I don't hear from anyone, I'll probably opt for a more conservative speed after a hold of a couple of weeks. 

[Kittygiggles]

I held at 30ml (10%) for 10 days. It went very well. I suspect I prevented a wave because I was a bit wobbly when I first hit 30ml, I then got better and felt fine within a few days. I dropped 2ml this week, then another 2ml 48 hours later, which was a mistake I think as I am in a light to moderate wave. I am okay but it doesn't feel too good. Consequently, I went back up to 28ml yesterday and I won't drop now for another few days. If things are okay, I will try to drop 2ml every 6 days approximately, which will mean I will reach zero around the end of the year.

 

After reaching zero I will post about once a month for up to 12 months. By that time I hope to be able to report that I am out of this nightmare forever! :) Hopefully this thread has helped someone else other than myself and may continue to do so in the future. 

 

Wishing you all long windows. 

[Kittygiggles]

Paresthesia/PN-like symptoms

 

Well, I was just asleep and was then jolted awake a few times due to my burning and tingling hands. So I am here now, trying to investigate things further. I stopped all supplements about 72 hours ago, which I suspect is not enough time to see if that was a cause. I had thought things were getting better as the sense of pressure was reduced, along with the redness and burning. However, not long after eating, it started again. After taking medication (both fluoxetine and levothyroxine), the symptoms don't really appear, it is almost always after food (suggesting a link with histamine). My diet is predominantly vegetables, eggs, fish, nuts, and fruit; I consume no processed food. I will fast to test this (I only eat once a day anyway and I am accustomed to >48 hour fasts). 

 

I dealt with this about 1.5 years ago (during cold weather), the exact dates aren't clear, I updated this thread about it:

 

Altostrata's post in the above thread (which I quote) gave me many possibilities to investigate. It also led me to this thread, which is invaluable as I find the burning and heat sensations are the dominant symptoms in my case, with pressure being less common and tingling being moderate to mild but almost constant:- https://www.survivingantidepressants.org/topic/6217-burning-skin-burning-feet/

 

I am wondering whether to go to the doctor about this but the last time I had this problem, he suspected poor circulation or neuritis, which are unsatisfactory diagnoses. The latter seems unlikely and the former doesn't quite fit as I always attributed pale and cold skin to poor circulation not red and hot skin. To anyone out there who's taken Niacin (vitamin B3) in a substantial quantity and experienced the 'flushing' that occurs, this is what it is like but localized to the hands and feet; in my case the hands seem most affected, with the feet and head affected less often, less intensely, or noticed less. 

 

I think the solution lies in tackling one of these three possible causes

1. Withdrawal

2. Nutrition (supplements and food)

3. Hashimoto's and levothyroxine dosing

 

It never occurred to me that withdrawal could cause this alone but having read a little of the threads above (which I will finish reading this morning more than likely), I am starting to suspect that it can make us more sensitive to fluctuations or deficiencies of vitamins and minerals, and the consumption of certain foods. I am new to histamines but it sounds like they could have a role to play in causing vasodilation, which explains the burning, redness, and pressure. As this started a month ago during colder nights, perhaps it is linked to cold-induced vasodilation. The photographs on this page (which I found via Altostrata's post above) https://rxisk.org/pssd-withdrawal-small-fiber-neuropathy/#comment-19612, which illustrate erythromelalgia in an article about PSSD and small fiber neuropathy, seem to match the way my skin looks when the symptoms flare up. I don't have PSSD, hopefully it isn't something I develop later!

 

No matter the cause, I suspect fluoxetine (its presence or diminished amount) is to blame in part! Any advice about this would be welcome, paresthesia is certainly alarming and distracting. 

 

My next step is to just research intensely (which I hate), exercise, and fast for a couple of days, as well as pretend this isn't happening as much as possible! I will reintroduce certain supplements and foods one at a time to see if the problem worsens. Otherwise, my withdrawal regimen seems to be going okay. 

 

[ChessieCat]

1 hour ago, Kittygiggles said:

it is almost always after food (suggesting a link with histamine). My diet is predominantly vegetables, eggs, fish, nuts, and fruit; I consume no processed food.

 

Alto posted this to a member:

 

On 10/18/2018 at 4:26 AM, Altostrata said:

Libra, if you have histamine intolerance, pears, melons, watermelon, peaches, fish, and buckwheat could cause symptoms. Please see

 

https://www.aha.ch/swiss-allergy-centre/info-on-allergies/-allergies-intolerances/food-intolerance/histamine-intolerance/?oid=1472&lang=en

 

https://www.histaminintoleranz.ch/en/therapy_dietarychange.html

 

Food sensitivities
 
Histamine food intolerance

 

Elimination or exclusion diets for reactions to food (food intolerance)

 

[Kittygiggles]

Hi Chessiecat,

 

Thank you so much for your response! I am hoping it is linked to histamine intolerance and is transient. I am not convinced yet that it is neuropathy because of the pressure I get in the hands, where they become difficult to close. I described it in the paresthesia thread as an 'invisible edema': the hands don't look puffed up with fluid but feel like it and are more difficult to close quickly and completely. Hopefully it is linked to some nerve dysfunctions along with temperature regulation and vasodilation.

 

I am confused and overwhelmed with all this new information, I am rapidly trying to absorb it now: I've been reading for about 2.5 hours straight so far. I am happy to try a histamine reduction diet as I can start that today because I am still too hungry to fast yet! One more thing I wanted to note here for anyone reading: I forgot to mention that coldness seems to alleviate almost all of the symptoms, including redness, pressure, especially the burning, and most of the tingling. I noticed that is mentioned in the paresthesia thread too. So much valuable information - much better than a doctor's appointment I bet.

 

Thank you again for posting!

[Kittygiggles]

Things aren't too bad, very tiny, short-lived waves that can be quite intense but they aren't really distinct from my whole withdrawal pattern thus far, so I'm continuing my reduction. With regards to paresthesia/erythromelalgia-like symptoms, they are continuing, some days are better than others but I outlined what I suspect it is here: 

As it almost always happens when I am sleepy I suspected medication timings being a factor, so I am changing it up with levothyroxine and taking it earlier in the day, and I will try to split the dose as well. I am due for another thyroid blood panel this week so I will have some more answers from those results. I will change the fluoxetine dosing time as well once I've ruled out levothyroxine timing. For any thyroid veterans: my last panel showed some T3 pooling, so that is likely an RT3 issue (something I can't test here either), which I can't do much to resolve other than via selenium and iron, testing adrenals and such is not something I can do easily around here. So I suspect that T4 is a good treatment for me until I find evidence to the contrary, again, NDT ain't an option around here. 

 

Supplements, food, exercise, temperature - it's a long slog to isolate every possible ingested element as a potential cause, especially as this whole thing is likely a combination of factors, so yesterday I gave up and restarted my supplements and food and felt a lot better overall with no change in the EM of course (which, if it doesn't get worse, is probably a good thing). Ultimately, I am coming to the strangely reassuring suspicion that there isn't much I can do about this as it is probably serotonin linked. Other than hypothyroidism/Hashimoto's, there aren't any health conditions I have (or aware that I have) that could cause this. I also seem to have Raynaud's phenomenon and have for a long time I think, it became worse after fluoxetine. 

 

Anyway, I have upped my potassium and I am keeping sodium the same for now but trying not to overdo it. I'll keep this thread updated and I will update the paresthesia etc thread when I find my answer. 

 

Wishing you all long windows!

[manymoretodays]

Hi Kittygiggles,

Your user name makes me giggly.

And wow......such excellent summaries of your taper thus far.

I see June 2017 as your start date to taper, with 20 mg of fluoxetine.

Where are you at now with your dosage?  In milligrams(mg)?

And forgive me......you may have stated it in narratives........

And what great narratives they are........with so much exploration.

Honored.

Love, peace, healing, and growth,

mmt

[Kittygiggles]

Hi mmt!

I like your purple font I can't claim to be the author of my username, I heard it in a stream once and loved it, so I stole it for use at SA. You made me realize my signature is inadequate, even for my own knowledge, as a reminder of what dose I am at. Since starting water titration I've always thought in milliliters and percent, which was fine for my own purposes but I've updated my signature now to include mg. Perhaps I can delete the percent values too as they appear distracting, I'll embolden the mg for now. 

 

Thank you for your kind words. I went to visit your thread and I found the Lakote Peyote song on there: 

 

The song took me by surprise, as I am now crying uncontrollably from peace and joy. Is the song meant to induce that? Well, this is strange, I don't think a song has made me cry since I was a boy, perhaps a few times over the decades but rarely. I guess I needed that and this song let it out. Thank you. 

 

Damn, that song took me by surprise. Second time around and I'm crying harder. But it's all good, I feel so loved by the song, how bizarre, I am confused, disconcerted but I am enjoying it. Maybe I shouldn't listen to music when posting XD

 

[manymoretodays]

Oh hey......I'm in dire need of a signature update myself!  And a introduction update too, for that matter.......

 

Okay.........as long as it's all good.  Yes, music is great.....

I'll just link you here to what another moderator put together on Music Therapy/Music for Wellness and Healing

In case you haven't had a look at that yet.

And no......I had no intentions with that share, of inducing crying......

I am slowly getting back to some Native American practices that have helped me along.  I get a comfort feeling from that one.  Peace.

 

It's another one of those weirdisms, I suppose.  Sometimes I listen to music while reading and posting.  Mostly......I don't.  My focus has improved as I've continued along......healing.........yet, I often go for quiet as well.

 

Okay then.....

Best,

mmt

 

 

[Kittygiggles]

Hey, no worries, don't have any concern for me. If anything, I'm laughing at myself now because it just came out of nowhere XD I am so happy I found it. Perhaps crying is an intended consequence of the song if it is meant to be healing, if one interprets crying as a symptom of healing. I feel I went through a form of emotional healing. Yes, like you, the song invokes a great sense of comfort in me and perhaps that's what I needed in that moment. Now and again, certain things line up and we find ourselves in magical moments like that. That was one of very few this year. I am going back now to more of the music and revel in this peaceful state. Thanks again  

[Kittygiggles]

Paresthesia/erythromelalgia/neuropathy-like symptoms

I am doing much better with my symptoms; the intensity has diminished significantly. The flushing, redness, pressure, and tingling happen when I am sleepy almost exclusively and I can't seem to link it to anything in particular, other than my serotonin hypothesis I posted in the paresthesia thread. I checked for diabetes, and hypertension, and I have neither. Of course the doctor suggested seeing an angiologist if things get worse over two weeks, after concluding that it wasn't serious and likely idiopathic. 

 

I am finally starting to realize that specialist appointments are becoming less necessary as I learn more about the profound impact SSRIs have on our bodies. Veterans here probably know this by now but for newcomers, myself included, it can be hard to realize that 'yes, these drugs are that powerful and can cause probably all the symptoms you complain about'. This doesn't exclude being alert and responsible with our health but in my case, as a recovering health anxiety sufferer and former OCD sufferer, I've done my fair share of taking my health seriously and exploring every possible avenue to explain symptoms. 

 

What have I done differently? 

I take about 30% of my RDA of potassium via a supplement and I have stopped adding salt to my food, I also supplement B3 in modest amounts and I have increased my B12 consumption. I have a diet low in salt anyway. Speaking of which, I have decided to remove fish and eggs as the last source of animal protein from my diet. Technically I am a vegan but I don't like that label as it is emotive.

 

On another side note, removing fish is a critical step in aiding my body's removal of mercury, which I suspect I have very high amounts of as I ate much more fish than a human ever should. I feel bad about that but I choose not to dwell on it. The last few years my diet has been entirely plant based but for fish and eggs once or twice a week but removing them completely will yield better results and I have plenty of evidence (anecdotal and from studies) that indicate that some of my issues came from this modest (relative to my past but normal in many cases) consumption.

 

I have also increased levothyroxine again, because I have no doubt that hypothyroidism is a cause of this extreme vasodilation, in conjunction with my Raynaud's phenomenon (extreme vasoconstriction in the peripheries in response to cold), the mechanism is all linked I suspect. I have been increasing my dose slowly this year, knowing how destabilizing it can be for my withdrawal journey. When I optimize my thyroid treatment, which has been a long process so far, I think part of this issue will disappear; I suspect that the tingling though is in part caused by fluoxetine, if not all the peripheral vascular abnormalities I have encountered. Anyway, I could go on forever about my hypotheses so I will stop there. 

 

Withdrawal

Things are okay. A few microwaves (lasting an hour or two at the most) and one episode of 'swooshing', which happened upon waking recently and vanished within about 5 minutes. Swooshing is quite alarming for me as it hearkens back to the brain zaps and extreme swooshing of my early withdrawal journey. Anything involving brain zaps or swooshing puts me in emergency mode and I become hypervigilant.

 

A little swooshing is probably okay though, for a few minutes in isolated incidents. We'll see if it happens again; if it does reoccur over several incidents over a day or two then I'll probably hold or updose. Anyway, I am just being cautious. I am hoping that my dreaded descent towards zero will be as good as it has been. Once I am ready to take the final step to zero, I will consult the approaching-zero thread again, and consider dosing myself once or twice a week when I am at around 0.066mg. There are other options I am aware of but that appeals to me greatly.

 

Wishing you all good health and fast recovery from withdrawal.

[Kittygiggles]

Raynaud's phenomenon (heat, redness, burning, and some swelling in the hands when sleepy)

It seems my paresthesia/erythromelalgia/peripheral neuropathy-like symptoms are Raynaud's. It took a while to work that out but that's two doctors now who suspect it. Whether it is primary or secondary is not known but I suspect it is linked to my hypothyroidism. The symptoms have improved a lot in the last week or two. I stopped potassium supplementation as I now understand why potassium is supplied in such tiny quantities: taking it can be very risky in terms of digestion issues as well as causing hyperkalemia, which translates to heart issues.

 

I consider my Raynaud's a minor inconvenience and it is nothing to worry about in my opinion. It should get better as my thyroid treatment improves. If it is caused by a vascular issue then my lifestyle is pretty much as good as it gets in terms of preventing atherosclerosis (I hope): I follow Dr Caldwell Esselstyn's diet, although I deviate by one handful of raw nuts a day, and fish once every 1 to 2 weeks. I don't smoke or drink. Although years of fatigue have limited my physical activity, this year has witnessed me increase my activity again substantially and in the last month or two, culminating in its highest frequency, duration, and intensity. My fasting blood sugar is excellent, my cholesterol is normal, no genetic predisposition, and I have a normal BMI. Leaving my main risk factors, as far as I know, to be stress and Hashimoto's thyroiditis.

 

I list all these things to demonstrate that I devote a lot of time and effort into being healthy. I am jaded enough though to realise that good health is never guaranteed and I am skeptical of any treatment protocol; i.e. it doesn't surprise me to discover that something that seemed foolproof, was flawed all along. It also doesn't surprise me anymore to discover an illness even when a person has followed an excellent lifestyle that minimizes risks, bringing me to my next point. 

 

Palpitations

Looking back over my notes, it seems I've had palpitations very infrequently over the last 3 years. I recall them being ectopic. That frequency would be 1 to 4 in a day and then weeks or months could go by without noting and/or noticing them. I can't remember when they started; perhaps I've always had them. Considering that one plausible hypothesis is that most people in the developed world will have ectopic palpitations, it is fair to dismiss them as extant eternally but noticeable periodically.

 

About four days ago I had them for around 12 hours and it was quite alarming due to their absence in recent months and their number and frequency. That day, they had a frequency of up to 360 an hour. The following day, I changed some supplements and tried to ignore them, and they diminished to what they are now, occurring up to 10 times per hour. It is a poor estimation but I am not noting them exactly. I have felt my pulse at a time when palpitation happened and I seem to only recognise a true extra beat about 25 to 50% of the time. Otherwise sensations can be attributed to indigestion, psychology, or some other rhythm disturbance, such as atrial fibrillation. I doubt it is the latter as it really is like an extra beat, with very little change in rate. I am due to wear a Holter monitor in the coming days.

 

The cause of these sensations could be withdrawal, as noted here:

 

 

However, there are a few avenues I feel might be better to consider before I decide to alter my fluoxetine dose accordingly. I am not against holding or increasing but I feel I must try to rule out other causes first.

 

Possible causes for my ectopic palpitations

 

* An increase in levothyroxine dose about 17 days ago: I am at 62.5micrograms, it is the highest dose I've been on and I know that it isn't considered a clinical dose usually until around 100micrograms. I have in the past, accurately or not, associated increases in levothyroxine dose with palpitations. Professionals have advised me this is the case, I am not sure if levothyroxine is a root cause of palpitations but rather the disruption that T4 (and subsequent T3 conversion) can cause in a patient who has yet to stabilize their thyroid treatment. Throughout this time, because I know she is right, Altostrata's advice has been haunting me:

 

On 7/17/2018 at 8:24 PM, Altostrata said:

However, you might want to hold on reducing your fluoxetine dosage for now, while you sort our your thyroid treatment. Are you taking thyroid hormone?

 

 

On 7/17/2018 at 10:39 PM, Altostrata said:

If I were you, I'd get the thyroid treatment settled before making further changes in Prozac dosage, not because of a causal connection or interaction (which you have very perceptively noted) but because excessive thyroid hormone can cause symptoms that may be confused with Prozac withdrawal symptoms. Changing more than one drug at a time introduces confounding factors, as you said.

 

 

The only reason I've not followed this advice is because I think stabilizing hypothyroidism treatment from what I understand thus far is a long, long process; I'd guess about 6 to 18 months depending on a person's available reasources. For anyone who is comfortable doing so, I'd advise fixing their thyroid treatment before withdrawing from an SSRI. I didn't because I started this journey without knowing much about my thyroid disease. In fact, I'd correct that by saying: I thought I knew enough about my thyroid disease to manage it effectively, as I had the confidence of having been advised by doctors and an endocrinologist. Like many things, it turns out they were wrong about so much of this condition and I've been underdosed since I was diagnosed.  

 

* Hashimoto's thyroiditis and hypothyroidism: There is no shortage of anecdotal and professional accounts describing a link between thyroid disease and palpitations. It could be that as I am underdosed apparently, my disease is just progressing or renders me more vulnerable to ectopic palpitations.

 

* Psychosomatic: I have been very stressed this year. As each month passes, I've found more health problems to deal with as a consequence of fluoxetine and Hashimoto's. My zombie-like state has diminished dramatically thanks to the reduction in my fluoxetine dose. Perhaps this means that although I am now willing and able to deal with them, they are very tough because of the fluoxetine years during which I let the world pass me by. To be fair, I think anyone waking up from an iatrogenic haze would be very stressed. I should cope with stress better but my health issues and circumstances make it difficult most of the time. However, I am managing to reduce it significantly. In any case, stress can increase palpitations and as I am in a state of hypervigilance, I link any sensation in the chest to my heart. This is something I am managing to do less and more effectively it seems. In addition, when I am fully immersed or concentrating on something, I will not get any palpitations or maybe 1.

 

* Indigestion: I don't think this is a cause but a minor contributing factor, via the vagus nerve perhaps.  

 

* Supplements: recently I've made some changes that I've reversed. Possible culprits were potassium (although palpitations started a few days after stopping potassium), vitamin B3, vitamin B1, vitamin D3, vitamin B12, fish oil, and a poorly tolerated magnesium supplement. Otherwise, due to hypothyroidism I suspect, I have low B12 that I treat successfully (if the standard blood test is conclusive) with methylcobalamin. My levels are close to the top of the range now and I aim to be around 20% above the range. Low B12 can cause palpitations with high B12 via supplementation being a possible but I suspect unlikely cause.

 

* Withdrawal: Palpitations didn't feature in my list of problems when I first had discontinuation syndrome. It doesn't rule it out as a cause, of course but it does seem to make it unlikely. In recent months my withdrawal profile has been excellent: no brain zaps, no brain swooshing, a major reduction in irritability, and an improvement in many other symptoms, including sleepiness and fatigue. Does this mean that palpitations are unlikely to be caused by withdrawal? Maybe but I won't rule out the possibility. If withdrawal is the cause then I may need to updose by going back around 3 weeks. If history repeats then I should encounter withdrawal symptoms about 2 weeks after an excessive reduction. I just hope my decision to keep going for now is a sensible one. I don't see much use in holding now; I wager I'd learn more from updosing and holding or continuing to reduce. Hopefully the next few days and week will yield enough information to make a safe decision.

 

Conclusion

As I mentioned above, to anyone skipping to this point, stabilize your thyroid disease or your SSRI withdrawal syndrome consecutively. Doing them simultaneously is a maddening mess! Thanks for reading all this and if you didn't, reconsider doing so if you need something to help you sleep

[Altostrata]

Yes, an increase in thyroid hormone could definitely cause an increase in palpitations. Finding the right levothyroxine dose can be challenging. You do not want to take a dose so high that it causes palpitations or sleep disruption.

 

Raynaud's syndrome is fairly common, especially in small-boned females. You will need to avoid cold. Magnesium supplementation might help.

 

 

[Kittygiggles]

Thanks for your response. A reduction in levothyroxine may take some time to result in an improvement (if any) in my palpitations. I am not convinced that it isn't withdrawal-related. 

I take magnesium citrate regularly. I've been very stupid over the years by ignoring when I was cold. I've taken that a lot more seriously and things have improved. I will link this post in the palpitations thread, in case it can help add to the general picture of palpitations in withdrawal.

 

November 13th = 1.066mg (16ml of 300ml)

November 19th = 0.933mg (14ml of 300ml)

November 25th = 0.800mg (12ml of 300ml)

December 1st = 0.666mg (10ml of 300ml)

December 7th = 0.533mg (8ml of 300ml)

December 8th: Palpitations started

 

My suspected period of withdrawal symptoms appearing is 14 days, so I would consider a dose matching what I was on about 21 days ago to be a good guess. My question is: if I am facing withdrawal as a cause of my palpitations, would an updose from 0.533mg to 0.933mg be sensible at this point?

 

I included the ml measurements in case I made a mistake in converting to mg. I am pretty stressed out right now so I am writing this post quite quickly. 

 

Edit: I forgot to mention that I induced a terrifying flurry of palpitations during some exercise about 30 minutes ago, hence my desire to look into updosing as a possibility. 

[Kittygiggles]

Fluoxetine's parting gift: what look a lot like benign premature contractions but are they a sign of something much more sinister to come?

I will never know what fluoxetine has planned for me unless I hit zero. Until then I am its prisoner, paralyzed by fear. A threat of a heart rhythm disturbance that may never resolve due to dropping too quickly is enough to terrify me. Having read the study that @Nuttinanna posted in the palpitations thread, there is a clear, causal link demonstrated between SSRIs and heart rhythm disturbance:

 

 

This effect seems dose-dependent though, so one would expect to have palpitations upon taking the drug, and when continuing it or increasing it. @Nuttinanna asked the pertinent question, which is:

 

"Seems it is the drug that is causing the palpitations, although don’t understand why I didn’t get any problems when I first started taking it."

 

Reviewing my health diary I noted that I had increased palpitations (albeit infrequent) upon reintroducing the drug at the commencement of my stabilization attempt and throughout it at times. However, I wonder what mechanism is at work here that makes some of us suffer the majority or all of our palpitations as we withdraw? It's frustrating and such a vital thing to know because both continuing and discontinuing the drug could have permanent adverse effects on this vital organ. 

 

In my case, I've been advised by doctors that it is likely my thyroid disease and accompanying replacement hormone, levothyroxine, causing my palpitations. It's the most probable cause, as I have noted increased palpitations with increased levothyroxine. However, I do consult with a thyroid disease forum, where palpitations are the norm for the poorly treated but I was reminded to keep my mind open about fluoxetine being an agent here.

 

Not long after my last post I decided to stop levothyroxine (not permanently, but for a week to two-week trial) to see if things improved. In an act of desperation and for one night only, I reverted to my 0.933mg dose of 3 weeks ago. I know, making two changes at once is stupid. What followed was no real change but for yesterday, where I decided to exercise and monitor my heart beat by hand, I noticed an increase in palpitations but they did not progress to a crazy number, as I continued to exercise, there was a decrease, then a return to a fairly un-alarming mean. In contrast to my palpitations at rest, it was a significant increase overall but not so many as to cause much alarm. Then, for the following 24 hours, I had hardly any palpitations, reducing to zero for most of yesterday evening. It was blissful.

 

I don't want to credit the dramatic improvement to the single increase of fluoxetine. Very early this morning, they returned, not at an alarming frequency but it signaled the end of the very good time I'd had, free of palpitations. I always have a problem with change so in one sense I would have preferred to not have such a wonderful day free of them as it has raised even more questions. Stress and anxiety, along with hypervigilance, are a perfect combination to induce more palpitations and make each one conspicuous. That certainly applies in my case but the root cause is not likely to be as sinister as a heart problem but it could well become sinister if it isn't identified, especially where fluoxetine is concerned. I think it is too soon for the levothyroxine reduction to have had a beneficial effect yet due to its long half life (~14 days) relative to its dosing frequency (daily). It certainly would have helped me avoid an impending increase in palpitations from my higher dose, if it were the cause of palpitations. That bears out thus far: I've had no major increase in palpitations and if anything, a reduction.

 

I guess I am hoping that someone knows the elusive answer to this puzzle. Could a single updose have really helped so quickly? 

I think it's possible but the delay was about 24 to 48 hours. I recall my first experience of reintroducing fluoxetine when I had my hardest wave, at the start of this journey: I felt relief within hours, possibly as few as 2 to 4 hours.

 

As I mentioned above, my main concern is that decisions made now, when I am so close to zero, could be critical to my long term health. I am clearly giving in to catastrophizing and perhaps I am overestimating fluoxetine's effect on me at this point: my dose is very small. I have no unusual withdrawal problems at this dose and I've found withdrawing over the last few months to be smooth for the most part but for the palpitations. To iterate though, palpitations never featured in my original withdrawal symptoms but I'm aware that with SSRIs, almost anything is possible.

 

What a mess, possibly of my own making.

 

Hope you're all doing well.

 

[ChessieCat]

20 minutes ago, Kittygiggles said:

I recall my first experience of reintroducing fluoxetine when I had my hardest wave, at the start of this journey: I felt relief within hours, possibly as few as 2 to 4 hours.

 

When I tried to reduce my Pristiq from 100mg to 50mg I experienced bad cog fog for 2 weeks.  Walking took my whole concentration.  At the end of 2 weeks I couldn't type.  I've been a professional typist for 40+ years so I knew something was really wrong.  Thankfully I had joined SA a few days before this happened and they had suggested taking extra Pristiq.  When I couldn't type I did this and about 4 hours later I could type again.  And my brain fog started lifting at the same time.

 

I had a benchmark so I knew that it was because of the drug and not placebo.

[Kittygiggles]

Thank you for responding. I remember your story, which you shared with me early in my journey. It helped me feel validated about my experience with reinstatement. As you're the only response I've got to go on, I can interpret it as perhaps implying that fluoxetine would have been unlikely to cause a beneficial effect 24 to 48 hours later in this case. This means it may be safe to continue to reduce as planned. 

 

I march on into the unknown and must accept that I may cause irreversible harm by doing so. I still have no idea whether to updose or not and it isn't fair to ask anyone else to make that decision for me. SSRI withdrawal presents a complex picture once again, incomprehensible to they lay person and perhaps to all for now.

[ChessieCat]

47 minutes ago, Kittygiggles said:

I can interpret it as perhaps implying that fluoxetine would have been unlikely to cause a beneficial effect 24 to 48 hours later in this case.

 

I wrote it as meaning the opposite, that yes, you may have felt the start of improvement after such a short period of time.

[Kittygiggles]

I appreciate your clarification and I apologize for my misinterpretation, thank you! Although in this context, I had mentioned feeling a benefit, like you did, within a few hours when I first reinstated. As this happened 24 to 48 hours later, I would consider that to be a longer period relative to that. The possibility that it was the cause of my temporary improvement is why I am here: to see if that really is valid. 

 

Updosing once like I did is dangerous: I need to updose then hold, then taper slowly from that dose in the future. I don't want to do it again unless I am as sure as I can be that the single fluoxetine updose was helpful. One thing that occurred to me after I wrote my post was I had forgotten that I had taken 7mg of methylcobalamin about 6 to 12 hours before feeling the improvement. So now I have another possibility to explore. I have revealed a B12 deficiency in a blood test before and have been supplementing ever since with successful increases in serum levels but that doesn't necessarily reflect an improvement in the deficiency. 

 

One could argue: what could possibly be the harm in updosing anyway and delaying the tapering schedule? My current response would be that continuing to take fluoxetine may also be the problem but that it was masked before by the drug's more prominent effects (extreme lethargy and reduced awareness). 

 

I still don't know why fluoxetine's reduction could cause palpitations when it is documented to cause them at increasing or stable doses. 

 

So, I'll take another 7mg methylcobalamin shortly and if I feel better within 12 to 24 hours, I'll know if it was that. If there's no noticeable improvement, I suppose I would have to try updosing fluoxetine tomorrow night. I am just desperate to prove, concretely, that tapering fluoxetine has no role in this. Perhaps I should play devil's advocate and be desperate to prove that it does, because if I fail in doing so then I have as close to proof as is possible.

 

[Altostrata]

3 hours ago, Kittygiggles said:

7mg of methylcobalamin

 

This is an unusual dosage, methycobalamin is usually dosed in mcg, generally 1000mcg per day.

 

When was the last time you changed your fluoxetine dosage? What was the change?

 

Members report palpitations after reducing just about any psychiatric drug. They can also be caused by excessive dosage, or by thyroid hormone. We need to see daily notes to isolate an adverse reaction.

 

People have different reactions to a drug over time because the nervous system changes. It's nature is adaptive. Your nervous system is not a constant variable. It is entirely possible to have an adverse reaction to a drug at a dose that never did anything before.

[Kittygiggles]

Hi Altostrata,

I am very grateful for your response. My B12 is in 1000microgram pills but I took 7 of them and I just felt writing 7mg was shorter but I can see how that could cause people to assume I've made some mistake in dosing. I'm comfortable taking 7000micrograms or any amount above that as I was tested as deficient a few years ago and need large amounts to receive any benefit. I am aware there is a small risk of hypokalemia with large dose changes so I added a little potassium to help with that. 

 

I am compiling a concise and clear snapshot of the days preceeding and following my updose to aid anyone who is willing to help me isolate a possible adverse reaction to my tapering schedule. My health diary is very detailed so I need to rewrite and shrink the relevant days. I will post the summary here as soon as I can.

 

I know very little about our nervous systems. Your words about it are insightful and I suspected that the mechanisms at play here would be beyond my current comprehension. I've known from the start of this journey not to rule anything out with SSRIs but my bias here is to look at the more probable explanations, in order of likelihood: thyroid medication, high stress and symptom-specific health anxiety with hypervigilance, fluoxetine continuation (not withdrawal), hypothyroidism, and lastly, supplements (B12 deficiency, too much of any supplement or not enough of another).

 

Thank you all again for reading.

[Kittygiggles]

This is a summary of symptoms and circumstances that will hopefully lead the reader to better determine whether my single updose of fluoxetine had any effect on my palpitations; or if there is any other factor that may be causing them. 

 

(I apologize that this took so long to finish. This is because I am not in the best state of mind and my health diary is very detailed; it is also hard to condense, is in a strange format, and my sleeping schedule has been erratic recently, since the palpitations for the most part. After all that, I hope it is legible. I can reformat it in any way that helps anyone reading this. I hope someone reads it and if you are, thank you!)

 

Note:-

• I don't mention withdrawal symptoms, which have been minimal for several months, excluding the possibility of palpitations being a withdrawal symptom, of course
• Aside from stress, health anxiety, and fatigue, I've been fairly happy
• All counts of palpitations are approximate, with reasonable accuracy
• All times are also approximations but are fairly accurate and rounded to the nearest hour
• I take magnesium daily and have done for a couple of years now, so I didn't mention it below as I can't correlate dose changes with these palpitations

 

December 7th

Exercise: ~3 minutes

Possibly relevant supplements: 1000µg B12, 1 large tablespoon of milled flaxseed, 1 Betaine HCl

• 16:00 (awoke) to 23:59: no palpitations, low stress
• 23:59: 0.533mg fluoxetine, 62.5µg of levothyroxine

 

December 8th

Exercise: 15 minutes 

Possibly relevant supplements: 1000µg B12, 1 large tablespoon of milled flaxseed, 1 Betaine HCl

• 00:00 to 07:00 (slept): no palpitations, moderate stress
• 14:00 (awoke) to 23:59: 20 palpitations an hour, indigestion, moderate stress and health anxiety, failed attempt to sleep
• 23:59: 0.533mg fluoxetine, 62.5µg of levothyroxine

 

December 9th

Exercise: 20 minutes

Possibly relevant supplements: 1000µg B12

• 00:00 to 05:00: 3 to 6 palpitations per minute, indigestion, high stress and health anxiety
• 05:00 to 06:00: 1 to 2 palpitations per minute after exercise, indigestion, moderate stress and health anxiety
• 06:00 to 07:00 (slept): 3 to 6 palpitations per minute, reduced to 1 per minute
• 16:00 (awoke) to 17:00: 6 palpitations, moderate stress
• 17:00 to 23:59: 1 or 2 palpitations an hour, low stress
• 23:59: 0.533mg fluoxetine, 62.5µg of levothyroxine

 

December 10th

Exercise: 20 minutes

Possibly relevant supplements: 1000µg B12, 1 large tablespoon of milled flaxseed

• 00:00 to 03:00: 1 palpitation an hour, low stress
• 03:00 to 04:00: 10 palpitations, low stress and health anxiety
• 04:00 to 08:00 (slept): 1 palpitation an hour, low stress
• 18:00 (awoke) to 23:59: indigestion, 1 palpitation an hour, low stress
• 23:59: 0.533mg fluoxetine, 62.5µg of levothyroxine

 

December 11th

Exercise: none

Possibly relevant supplements: 1000µg B12, 1.5 large tablespoons of milled flaxseed

• 00:00 to 08:00 (slept): indigestion, 1 palpitation every 2 hours, low stress
• 17:00 (awoke) to 23:59: 1 palpitation an hour, low stress and moderate health anxiety
• 23:59: 0.533mg fluoxetine, 62.5µg of levothyroxine

 

December 12th

Exercise: 10 minutes

Possibly relevant supplements: 1000µg B12, 1.5 large tablespoons of milled flaxseed

• 00:00 to 06:00: indigestion, 1 palpitation an hour
• 06:00 to 09:00 (slept): indigestion, 2 palpitations an hour, moderate stress and high health anxiety
• 19:00 (awoke) to 23:59: 1 palpitation, moderate stress and health anxiety
• 23:59: 0.533mg fluoxetine, 62.5µg levothyroxine

 

December 13th

Exercise: ~3 minutes

Possibly relevant supplements: none

• 00:00 to 10:00 (slept): 1 palpitation an hour
• 17:00 (awoke) to 21:00: 2 to 4 palpitations an hour, high stress and health anxiety, appointment with doctor for palpitations, checked my pulse and blood pressure, said heart was strong with 120/80, no palpitations felt during the short period he monitored me
• 21:00 to 23:59: 2 palpitations an hour, high stress and moderate health anxiety 
• 23:59: 0.400mg fluoxetine, 0µg of levothyroxine

 

December 14th

Exercise: ~3 minutes

Possibly relevant supplements: none

• 00:00 to 05:00: 2 palpitations an hour, 10 palpitations over ~3 minutes during recovery from exercise, extreme stress and health anxiety
• 05:00 to 10:00 (slept): unknown number of palpitations, I did not note them, almost certainly fewer than before
• 18:00 (awoke) to 23:59: ~20 to 30 palpitations an hour, high stress and health anxiety. Decided later in the evening to go to an out of hours appointment at the hospital, performed 40 second ECG, which was too short to capture palpitations that appeared on the monitor, which looked like PACs or PVCs. I couldn't tell as I had little time to study the P waves. Luckily, I managed to rule out a few sensations that felt like minor palpitations as transient sensations, perhaps from indigestion, anxiety, or a psychosomatic component of stress and health anxiety and resultant hypervigilance. So I was able to really feel the difference between real palpitations and everything else. I felt better after this ~1 hour appointment and upon getting home again, although it was a disaster in other regards.
• 23:59: 0.933mg fluoxetine, 0µg of levothyroxine

 

December 15th

Exercise: 35 minutes

Possibly relevant supplements: none

• 00:00 to 02:00: 4 palpitations an hour, moderate stress and health anxiety
• 02:00 to 12:00: 5 to 10 palpitations an hour, moderate stress and health anxiety
• 12:00 to 13:00 (slept): 1 or 2 palpitations, moderate stress and health anxiety. Had a consultation with cardiologist, no testing, very reassuring and suggested my palpitations were the cause of thyroid disease, stress, and health anxiety. He did not respond to my suggestion of fluoxetine reduction being a cause. No palpitations, low stress
• 19:00 (awoke) to 20:00: no palpitations, low stress
• 20:00 to 23:59: Stressful and long family phone call, 4 to 8 palpitations over 2 hours, high stress and low health anxiety. 10 to 15 palpitations during and after exercise, moderate stress and low health anxiety
• 23:59: 0.400mg fluoxetine, 0µg of levothyroxine

 

December 16th

Exercise: none

Possibly relevant supplements: 7000µg B12, 1 large tablespoon of milled flaxseed

• 00:00 to 02:00 (slept): no palpitations, low stress
• 04:00 (awoke) to 08:00: 1 palpitation an hour, low stress
• 08:00 to 12:00: 1 to 2 palpitations an hour, took vitamin B12, moderate stress and low health anxiety
• 12:00 to 16:00 (slept): no palpitations, low stress
• 22:00 to 23:59: 1 palpitation, low stress
• 23:59: 0.400mg fluoxetine, 0µg of levothyroxine

 

December 17th

Exercise: none

Possibly relevant supplements: 7000µg B12

• 00:00 to 05:00: indigestion, 1 palpitation an hour, low stress
• 05:00 to 09:00: 2 to 4 palpitations an hour, moderate stress and health anxiety
• 09:00 to 12:00 (slept): no palpitations, moderate stress and health anxiety
• 21:00 (awoke) to 23:59: 1 palpitation, took vitamin B12, moderate stress and health anxiety
• 23:59: 0.400mg fluoxetine, 37.5µg of levothyroxine

 

December 18th

Exercise: none

Possibly relevant supplements: 1 large tablespoon of milled flaxseed

• 00:00 to 05:00: no palpitations, additional fatigue, low stress and health anxiety
• 05:00 to 06:00: indigestion, 5 palpitations, low stress and moderate health anxiety
• 06:00 to 08:00: 1 palpitation an hour, low stress
• 08:00 to 12:00: no palpitations, low stress
• 12:00 to 13:00 (slept): 1 palpitation, low stress
• 18:00 (awoke) to 23:00: 1 palpitation an hour, low stress and moderate health anxiety
• 23:00 to 23:59: 3 palpitations, low stress and moderate health anxiety
• 23:59: 0.400mg fluoxetine, 37.5µg of levothyroxine

 

December 19th

Exercise: 20 minutes

Possibly relevant supplements: none

• 00:00 to 02:00: 1 palpitation an hour, moderate stress and health anxiety
• 02:00 to 03:00 (slept): 4 palpitations, moderate stress and health anxiety
• 05:00 (awoke) to 06:00: 4 palpitations, moderate stress and health anxiety
• 06:00 to 07:00: 4 palpitations during exercise, 3 palpitations on recovery from exercise and later, low stress and health anxiety
• 07:00 to 12:00: 1 palpitation an hour, moderate stress and health anxiety
• 12:00 to 14:00 (slept): 4 palpitations an hour, high stress and moderate health anxiety
• 22:00 (awoke) to 23:59: no palpitations during exercise, 5 to 10 on recovery from exercise and later, high stress and high health anxiety
• 23:59: 0.266mg fluoxetine, 37.5µg of levothyroxine

[Kittygiggles]

I have continued my tapering schedule. My palpitations aren't getting worse overall. I may need to go over what I wrote above and add up the total palpitations for each day. This may help determine, at a glance, which days were better or worse. 

 

Today was okay but I haven't exerted myself yet, a few palpitations but a fairly low day I think. I am trying to ignore my chest and that helps too. It is so hard to determine whether fluoxetine is to blame as I have so many other possibilities to explore. 

 

I am tortured by whether I should updose or not. I would be devastated if I had to extend my tapering further. However, I imagine that if my tapering schedule was too fast then I would need to double or triple it, taking me to May or June. One advantage of updosing and trying to hold for about 2 weeks, is that it would give a strong indication as to whether fluoxetine was the cause. There are valid points to every argument I come up with:

 

Fluoxetine caused this and masked it simultaneously but not at this dose

Fluoxetine withdrawal caused this despite not getting palpitations during my last withdrawal (the original bad taper)

Levothyroxine caused this as I increased it too suddenly

Hypothyroidism caused this as I am under-dosed

I have always had palpitations but I only started feeling them so much now

Palpitations may have just happened spontaneously and they are idiopathic

Stress caused this

The palpitations may be self-limiting and holding or updosing would then be unnecessary procedures that I would be bound to

Supplements or lack thereof caused this

Some other condition caused this

By extending my tapering regimen, I am increasing the risk that fluoxetine can cause more damage

 

There are so many more points and many conflict with each other.

I think the strongest point is that I haven't had any problems with withdrawal in recent months. Even now, under these stressful circumstances, I don't have any significant withdrawal issues. I have no brain zaps, extreme dizziness, nor irritability. 

[Kittygiggles]

Last known good (or in this case, stable) configuration

It was likely 0.933mg of fluoxetine and 37.5µg of levothyroxine. I just went to increase my fluoxetine dose to match it. I was in bed, trying to sleep and I believe it was the right choice. I will stick with this for 2 weeks to see if there's any improvement in palpitations. If there is no improvement then I will resume my original tapering speed but from the new dose, of course, taking me to March as my final date. If it does improve the palpitations then I'll hold a little longer to secure that improvement further before tapering at 50% or 33% of my last speed, taking me to June as my final date. Perhaps the damage is done and updosing will have a limited to no effect. At least this way, I can find out whether I had an opportunity to reverse some or all of this with a simple updose.

 

Priorities

I realized in my bedtime rumination that I needed to let go of my disappointment. I designed a microtapering regimen that got me to this point but it was, in part, as all are to a certain degree, arbitrary. I made my calculations and the final date was the 31st of December 2018. I don't care about the specific day much other than I wanted to start the new year at 0mg with no more fluoxetine in my life. 

 

It is a nice concept but that is mostly what it is. I don't know what issues continuing to take ~1mg of fluoxetine will have on my health but there is evidence to suggest that it will be a smaller impact than 20mg. Otherwise, taking a syringe of titrated fluoxetine every night took only five minutes a day at most. That is possibly the only discernible impact fluoxetine had on me. So what if I'm disappointed with my new tapering schedule? I need to let go of it because, what's more important than enduring disappointment? 

 

Heart health.

 

I made it to a 95% reduction without any major issues (unless my paresthesia/Raynaud's is a part of withdrawal but it seems unlikely). 

I should be proud of that.

 

I am now taking steps to explore every possible avenue to ensure that my heart gets the best chance to be healthy.

 

I should be proud of that too.

 

I feel much better now and I'll update this post over the next two weeks with any change to my palpitations. Holding at 0.933mg will be easy otherwise as I had no withdrawal issues at that dose and I have none currently.

 

I'll try to summarize the symptoms diary above soon.

[bubbles]

@Kittygiggles I've also had the same thoughts that a low dose of an SSRI is better than a high dose. I'm at 5% of my highest dose. It has hugely decreased my side effects and if I had to stop here, then I'd actually have a pretty good quality of life. It is good sometimes to look at how far we've come. At 5% of my original dose, I still have 2 years to go, so I try to look at how far I've come - 95% down.

[Kittygiggles]

Thank you for the support @Bubbles, it's nice to have visitors here. It's hard to believe I used to be amazed when I had reduced by 10% successfully as I thought something like 50% would be amazing. Now, I am too impatient and not impressed by anything less than 100%. I am trying to accept that 95% is huge, even if I had to updose to 80% it would be an accomplishment, which brings me on to my question:-

 

By how much should one updose? (I tried finding a subject with updose in the title or as a main theme but couldn't)

I gave myself a dose I was on 3 weeks prior to the palpitations. I think I would show symptoms about 2 weeks after a too rapid drop. It's my best guess. However, I am curious to know whether anyone has any better idea, based on the symptoms summary above or anything else, if I should be aiming for a larger updose? I feel like I get one shot at this and I want to do it right. I am only 8 hours into the updose so of course, there's no improvement yet. I am giving it 14 days. Any advice would be appreciated. 

[ChessieCat]

The reinstatement topic is relevant to updosing:  About reinstating and stabilizing to reduce withdrawal symptom