SoundPeace: Do serotonin receptors regenerate?

[Altostrata]

I was cured of severe lone afib by the Natalie-associated ablation method. Best to catch it early, that's why I recommend seeing an electrophysiologist if it's a persistent problem.

 

Given you have afib, if I were you, I'd continue with non-drug techniques to manage withdrawal symptoms.

 

Please let us know how you're doing. 

[SoundPeace]

Hello Altostrata,

I hope you are well. Thank you for sharing your successful experience with ablation. I certainly take note. I've now been referred to the hospital's Cardiology dept from my GP to discuss ablation therapy. I am now waiting for an appointment to come through. In the meantime I went to see a cardiologist yesterday to review my current medication for BP and Paroxysmal AF. He suggested to perhaps try Verapamil instead of a betablocker whilst confirming that ablation was probably my best option in the long term. I have been looking at several electrophysiologists in London and will now  book a private appointment with one that uses the 3D modelling assisted method and discuss their opinion on using the cryo-balloon as well as radio-frequency for ablation. I may ask my GP to refer me to them instead for treatment through the NHS because the cost of ablation is around £8000 a go privately. Hopefully, I will be able to get this done for free through the NHS, but there'll be a wait. The Afib is not persistent, but I do get Atrial flutters and PVCs throughout the day (morning and evening especially). This can also be treated successfully through ablation according to the cardiologist I saw yesterday. 

 

Meanwhile, the PAWS are taking me through a wave of persistent full body paresthesia, flu-like symptoms, sweating, dizziness, tremor, muscle aches, headache, tinnitus, dry mouth, milder forms of depersonalization and derealization than I previously had earlier on. But, as previously mentioned, PSSD seems to have resolved and I am still sleeping better than I was earlier on too. Interestingly, some persistent eczema I had developed on my lower right leg near my heal for the last 10 years has now diminished (as it did - and fully disappeared - about 4 months after stopping Citalopram about 5 years ago, but then came back when I started Escitalopram a year after). 

 

Exercise is still helping me dealing with mild/moderate depression. It works quite well as a mood elevator. 

For anxiety, I try using CBT techniques and being mindful of my breathing. Unfortunately I do have PTSD from serious childhood life traumas that long predate my use of SSRIs which I identify as the main source of my subconscious anxiety. To help manage my anxiety I am listening to and reading Dr Gabor Maté's work as well as continuing with my psychotherapy sessions with a hope towards at least a functional level of recovery. 

 

Apologies for the wordy update!

 

 

 

 

 

[Altostrata]

17 hours ago, SoundPeace said:

But, as previously mentioned, PSSD seems to have resolved and I am still sleeping better than I was earlier on too.

 

These are good signs that your withdrawal syndrome may be resolving. If you can, you might wish to postpone taking heart rate drugs as you may be hypersensitive to them. It's also possible the palpitations will resolve with the withdrawal syndrome.

 

Supplements that might support cardio health are fish oil, magnesium, taurine, CoQ10, vitamin D3, and green leafy vegetables for the folate. If you are low in B12, you might want to start with a tiny chip of a sublingual tablet and build up. Always try supplements one at a time at low doses because withdrawal can make people sensitive to supplements, too.

 

17 hours ago, SoundPeace said:

Exercise is still helping me dealing with mild/moderate depression. It works quite well as a mood elevator. 

 

This is very important for general health, too.

 

Please let us know how you're doing. 

[SoundPeace]

These are good signs that your withdrawal syndrome may be resolving. If you can, you might wish to postpone taking heart rate drugs as you may be hypersensitive to them. It's also possible the palpitations will resolve with the withdrawal syndrome.

I would like to do that but I am also afraid of palpitations increasing, and the return of Afib. 

I've noticed that my nervous system gets increasingly tense from about 11:30 am until about perhaps 2:30 pm. Then a return of the intensity from about 4:30 pm until late at night. The symptoms are all the ones that I have described + echoes of psychological effects experienced during a panic attack (sense of dread and disconnection with anxiety about not being able 'to go anywhere', feeling trapped). So far I am able to just about tolerate it whilst talking myself through it and acknowledging my feelings, etc. I often wonder how much of these symptoms are connected to PAWS. I have experienced anxiety and full blown panic attacks before taking SSRIs. It sometimes seems I have a mixture of PAWS and returning PTSD symptoms. 

Always try supplements one at a time at low doses because withdrawal can make people sensitive to supplements, too.

Yes, that makes sense. 

[Happy2Heal]

15 minutes ago, SoundPeace said:

I am also afraid of palpitations increasing, and the return of Afib.

your sleep is improving according to your signature, if this is true you are doing well!! very well! you are healing!

 

it does you no good to frighten yourself about the what ifs...  palpitations can be caused by excessive worrying. You can get yourself into a vicious cycle of worry about them that only increases them, Please don't do this to yourself.

21 minutes ago, SoundPeace said:

The symptoms are all the ones that I have described + echoes of psychological effects experienced during a panic attack (sense of dread and disconnection with anxiety about not being able 'to go anywhere', feeling trapped). So far I am able to just about tolerate it whilst talking myself through it and acknowledging my feelings, etc. I often wonder how much of these symptoms are connected to PAWS. I have experienced anxiety and full blown panic attacks before taking SSRIs. It sometimes seems I have a mixture of PAWS and returning PTSD symptoms. 

 

Having PTSD complicates withdrawal and recovery, for sure. I have PTSD and some of the symptoms of withdrawal would trigger me very badly.

 

regardless of whether the symptoms are from PTSD or withdrawal (sorry I don't know what PAWS Is)  we still need to find ways to handle them

 

I am now almost 5 yrs off all drugs and the severe dread and feelings of panic and feeling trapped have gone away. Except when my PTSD is triggered- because I still have that, and have learned ways to live with it.

 

but overall, day to day, I am fine. 

 

since you've had panic attacks before you took SSRIs, you know what it feels like and you know that panic attacks don't harm you, they just feel really awful.

I forget, have you looked into the Claire Weeks method for handling panic?

She has very helpful ideas

I don't know about you, but NONE of the various psych drugs I was given did anything to help me with PTSD.

Unless you count emotional blunting as something that is helpful. and I do not. When something dulls one feeling, it tends to dull them ALL and now I can feel joy and anticipation and all the good things... and I won't give those up. I will find ways to handle anything that triggers my PTSD feelings.
It's annoying to have to deal with these but they are very much manageable without drugs

 

I wish you all the best in your journey to healing and health!

 

you seem to be well on the way!! please try to see the good things that are happening and look for more of those

 

it can be self defeating to keep going back to what is still not healed... all of that will get better eventually. Just give it a bit more time!!

You are progressing very well I am very happy for you and I am a bit jealous that it is going so quickly for you. 

 

 

[SoundPeace]

Having PTSD complicates withdrawal and recovery, for sure. I have PTSD and some of the symptoms of withdrawal would trigger me very badly.

Sorry to hear you have PTSD. Glad you found ways to cope. By PAWS I mean Post Accute Withdrawal Syndrome.

 

It feels confusing at times because the severe dread and feelings of panic and feeling trapped are somewhat familiar in some way and yet quite aline at the same time. No wonder GPs get confused too! I haven't looked into Claire Weeks yet but I'll give it a go, thanks. 

 

At first the psych dugs seemed to make me dwell less on things and blunt my sad emotions a little (apart from anger). I felt like there was still hope and I could move on.

But then over the years, the drugs lost their effect and I became increasingly low in mood with episodes of night time panic/terror (PTSD coming back), which would then subside. Now that i'm off them there is this sense of dread and physical symptoms with emotional blunting apart from bouts of sadness and tearfulness. I don't feel any joy so far. I feel fatigue, disorientation and hyper alert in waves throughout the day. You mention 'anticipation'. That's interesting because this is something that currently provokes anxiety in me, and I have to talk myself through it to put things into perspective. It seems that the possibility of feeling something joyful would trigger my PTSD.

 

Thank you for your kind words of support and encouragement. Some things seem to be changing for the best (PSSD and sleep) and others are lingering...

I hope I get there and am able to feel happy and share that with others

[Happy2Heal]

32 minutes ago, SoundPeace said:

It feels confusing at times because the severe dread and feelings of panic and feeling trapped are somewhat familiar in some way

do you have clear triggers for your PTSD?  feeling trapped and out of control trigger me. The way recovery goes- the symptoms coming and going outside of our control and not being able to do anything about that, is basically like being triggered on a daily basis. I've read the stories of others who have PTSD that went thru withdrawal and we all seemed to have a lot in common. The symptoms were difficult enough to manage, but add on an already high level of alertness and anxious anticipation and dread, and all the symptoms are magnfiied.

 

it is not an easy thing to get thru, but all of the members here that I have followed over the years have made it thru to the other side, and I did too.., so while difficult and uncomfortable for sure, it is do able.

I am so sorry that you have PTSD too, and thanks for your commiseration. I've finally got to the point where I am seeing my friends struggle with all sorts of aging related troubles and I feel, well not lucky, exactly, but it helps me to put it into perspective.  I figure that there are a lot worse things I could be going thru. 

but really no one gets thru life without some sort of struggle and troubles. 

We just have to figure out how to make the most of the cards were were dealt.

You seem to be doing extraordinarily well, taking control of your health and doing all that you can do to keep yourself as healthy as possible.

I've got friends who literally do all the things that are unhealthy and then go to their doctors and say "Fix me!" I've had 3 different friends use those exact words in the past couple of weeks and I have to shake my head because they are not doing ANYTHING to help themselves. It's sad and very frustrating. I don't want to lose my friends prematurely and I want to shake them and say, stop eating junk food and go for a walk once in a while! but you can't do that. I'm tempted though! I need to figure out a tactful way to say the same thing I guess 

32 minutes ago, SoundPeace said:

You mention 'anticipation'. That's interesting because this is something that currently provokes anxiety in me, and I have to talk myself through it to put things into perspective. It seems that the possibility of feeling something joyful would trigger my PTSD.

 

 

hmm I can't say I've ever heard of someone being triggered by the chance of feeling joy...?  perhaps feeling joy or getting your hopes up is part of a triggering event or events in your life, where you got your hopes up or started to feel happy, only to have that ruined or your hopes dashed? 

 

 

I think I used to sometimes fear becoming too hopeful, but since getting off all the psych drugs I have had such a wide range of feelings including great joy as well as deep deep sadness, grief and sorrow... but the JOY has not been spoiled, and so I have quickly learned that is safe to hope for good things and to anticipate them.

 

Maybe more experience will lead you to not be triggered by the anticipation of happiness as well? I surely hope so!! it is a sad life when you are afraid to be happy.

 

I found it very helpful to try to think about what I was thinking when I was triggered. 
One simple example: during WD recovery, if I spilled something or in some way made any kind of small mess, I would have extreme fear and rush to clean it up.... I realize that I was afraid of being punished, as I was, quite severely by a step grandmother when I was quite young.... So when  I felt that fear I would talk myself down by reminding myself that I was safe, that the person who hurt me in the past is now in fact, dead and long gone and that nothing bad was going to happen if I didn't immediately clean up a spill.  It was crazy how upsetting and alarmed I got about things like this! 

 

there are many other things that trigger me and sometimes I am not able to sort out exactly what the trigger is, but I can still do things to calm myself and remind myself that I am safe now, that there is nothing bad happening RIGHT NOW and that the fear and dread, while unpleasant for sure, are NOT harmful

 

it is hard to do when you are anxious and I still have times when I forget, but if I practice at it, I get better and better and can head off those spirals of panic and dread over things that are not even happening, but only exist in my mind

 

I know you can do it too, you have a lot of insight and are showing a lot of strength and determination in the ways you are handling this journey so far

 

keep up the good work and don't be afraid to ask for reassurance when you are struggling, until the time comes when you have learned to reassure yourself

During recovery, we are dealing with neuro emotions and so it is harder to talk yourself down from those.

 

hang in there! you will have happiness and peace too!

I feel such profound peace now and that is in part due to the habits I have learned to cultivate during this journey off the drugs

 

you'll get there too!! 

 

[Altostrata]

Please keep daily notes of times o’clock you take your drugs, their dosages, and your symptoms throughout the day. We need to know how you feel before and after taking each drug, and any significant symptoms in between. Post 24 hours of notes at a time in this topic, in a simple list format with time o’clock on the left and notation (symptom or drug and dosage) on the right. This can help us figure out what's going on.

[SoundPeace]

Sometimes the triggers are clear and I can clearly see the link between the cause and effect. I am trying to learn how to deal with these differently. It mostly involves not making any early decisions, taking my time to respond when I am ready to do so, rather than deal with life like everything is in a state of emergency. My father's job in covert operations led our family towards a life of secrecy, smoke screens and a nomadic life. There were casualties. 

 

At other times, it seems that a part of my brain enters a space where everything feels frozen and this makes me feel like having just been hit in the head and feeling spaced out and disconnected with the fear of my life could be taken away at any moment. This is the scariest one for me. The closest thing I can relate it to is a very serious traumatic accident I experienced when I was 14 years old. I wasn't hit in the head but the shock of what happened to me physically resulted in unimaginable pain and fear. I was lucky to have survived. I lost my left foot from a mooring line I was managing during a manoeuvre a barge my family was once living on in the south of France. Incidentally, as a US citizen, you will have definitely heard of the person my dad bought the barge from: the Hollywood comedian Dan Rowan from the Rowan & Martin's Laugh-In show. I remember him very well to this day. Anyway I digress. My psychotherapist has done some regression therapy with me on this accident and I was astonished on how easily I found myself brought back to the time it happened. It was very intense and quite traumatising to relive the event. Back in the day, in order to survive and move on I buried the whole thing, and became anaesthetised to the emotional memory. But it's still there in my subconscious mind and I believe this can be the only thing potent enough to affect me today in the way I described. My psychotherapist encourages me to acknowledge this and speak to speak with my inner child as a good parent would. It may take years to heal.

 

The third trauma is perhaps a more common one and perhaps easier for me to identify. It is that of separation anxiety. My father was a very jealous man and he would do anything to get me out of his way from my mother. It has plagued me throughout my life and poisoned several of my relationships. But, I have recently made a decision to address this and understand that it is a lifetime commitment. I am happy about this decision. It's not easy to address but I believe it is essential in order to have a chance in growing in to the person I was meant to be. 

 

It certainly helps to be reminded of the Surviving Antidepressants members who have made it through! I have read several success stories on this site and I am so happy for the ones who have come back to tell their tale of deliverance. 

 

I understand how frustrating it must be for you at times when you witness some of your friends who may not always be helping themselves in the best way. We often wish the best for those whom we love and care for. I get the feeling that you are tremendous and loyal friend to them in the face of these difficulties.

 

Your response to me saying I can be 'triggered by the chance of feeling joy' is pretty insightful. It is true that I have had many instances throughout my life where my hopes were ruined, but I think it is also possibly related to not being able to express myself fully as a child due to the fear of parental reprimand, especially from my father. 

 

I do hope that I can find a way to carry myself successfully through the simultaneous challenges of SSRI withdrawal, childhood trauma healing and self-actualisation. I would like to think that I will one day be able to look forward to once again live new joyful experiences I can share with others where I feel safe and connected. SSRIs were once able to give me a sense of relative freedom from trauma related thoughts and fearful subconscious feelings. Today, post SSRI I see them reappear sometimes more clearly but from the point of view of someone who has had twenty years of life experience which weighs just as much as the traumas do on the scales. So it's technically and existentially a 'new' situation which as an idea is hopeful in itself. The pre-SSRI baggage is still within me, as well as all the nasty SSRI withdrawal side effects many of us are so familiar with. I hope that the person I have become today will be able to nurture the person I once left behind is very much with me today with all his wounds. Every time I see him appear I cry. I believe this is a good thing, and part of the healing process. 

 

Thank you for your insight and for sharing with me some of your own experiences. It does help me to feel connected. I am so happy for you to having found profound inner peace. You deserve it!

 

[SoundPeace]

Please keep daily notes of times o’clock you take your drugs, their dosages, and your symptoms throughout the day. We need to know how you feel before and after taking each drug, and any significant symptoms in between. Post 24 hours of notes at a time in this topic, in a simple list format with time o’clock on the left and notation (symptom or drug and dosage) on the right. This can help us figure out what's going on.

 

Thanks Altostrata, I'll follow the simple list format and start recording the info on a daily basis and post 24 hours of notes at a time. I hope this will help. 

 

 

[SoundPeace]

Hello Altostrata,

I wrote my diary in Word and attempted to copy and paste it here but it wouldn't allow me to. So I have attached it as a JPEG down below as 'Diary - 04/08/23.jpeg' (PDF format too large).

Edited August 5, 2023 by SoundPeace
Formatting issues preventing me from either copying and pasting from Word document or PDF too large.

[PurpleRein]

It is common for PTSD patients to have low Vitamin D.  Have you had a test done?

[Altostrata]

On 8/5/2023 at 2:29 AM, PurpleRein said:

It is common for PTSD patients to have low Vitamin D.  Have you had a test done?

 

It's common for anyone to have low vitamin D. A blood test for vitamin D and possible supplementation with vitamin D3 is a good idea.

 

@SoundPeace it appears you have withdrawal syndrome. Symptoms generally come in waves and move around the body, changing into other symptoms. If you've seen slow progress since your last dose of escitalopram in February, this is likely to continue, but very slowly. It will be frustrating.

 

The other option is to reinstate a low dose of escitalopram or its milder sibling citalopram, but both have been associated with adverse cardio effects, as explained above. A longer shot would be another SSRI, such as fluoxetine, but any might have cardio effects.

 

What do you want to do?

[SoundPeace]

My Vitamin D levels were 50 nmol/L on the 03 May 2023 (normal range is between 50 to 250 nmol/L). Although within range they are on the lower side, but 50 nmol/L are said to be sufficient for almost whole population. I need to check whether it's ok for me to take Vitamin D with the Electro-Physiologist I'm seeing tomorrow as according to the MayoClinic taking high doses of Vitamin D with Verapamil (Calcium channel Blocker 40mg x 2 day) which I started taking yesterday instead of Atenolol can cause hypercalcyemia, and might also reduce the effectiveness of verapamil. I might be sounding a little overcautious but I'd rather check first. 

 

 

 

[SoundPeace]

To Altostrata:

 

I appreciate the rationale behind reinstating an SSRI at this point. However the thought of it also scares me. 

When I was on full minimum dose (5mg) Escitalopram I hardly ever experienced or noticed any of the cardio effects I have now.

These effects always seem to appear either when I'm tapering (and get worse as the dose gets smaller even after staying months at each new dose) or when I'm off completely. So even if I reinstate at a small dose I won't get rid of these issues. In fact they get worse as the doses get smaller. It might also take up to another year for my other PAWS to diminish as it took when I had previously reinstated with Escitalopram after battling with Citalopram PAWS for 1.5 years about 4 years ago. In fact even after a year of reinstatement with Escitalopram at 5mg, as the PAWS gradually diminished but never fully disappeared, it felt like this new drug was also gradually losing its effect and the SD and accompanying genital numbness seemed to be getting worse. In this respect, I experienced this as worse with Escitalopram than with Citalopram. This leaves me wondering if my cardio issues are mainly PTSD based and that SSRIs actually help to get rid of them, but at the cost of SD and emerging neurological damage. I've wondered if emotional blunting might even be partially therapeutic for me in this context. This is why, I believe, back in the day (2002) I was encouraged to take Citalopram (Escitalopram wasn't yet on the market in the UK at the time). My Afib is paroxysmal and seems to be an extreme manifestation of the palpitations I feel due to my PTSD. 

 

My current thinking is that either I fully reinstate with an SSRI to mask (at least partially) the accumulated side effects and gradually see my libido disappear (I am more susceptible to this side effect these days due to my age) or hopefully find a way to cope with PAWS whilst living like a recluse taking cardio medication or/and have an ablation to prevent any risk of Afib returning, with the possibility of not being able to return to active and social life for a time that cannot be predetermined. 

So far I have been fighting to stay SSRI free and it has cost me in several ways (social, relationship, economic). I have seen what appear to be improvements but they also come and go in waves. I don't think I'm ready to give up just yet in spite of the situation and how it affects my morale and outlook. Like many other people on this site I guess, I'm in limbo. At this point in time it increasingly appears to me that there is no full way out of this situation without losing something important. I haven't yet come to any conclusion on what I am prepared to risk and trade off. In my case scenario it may be that I'm asking for too much and not being realistic enough. Perhaps with more time I will be able to come to a decision I can live with. 

 

 

 

 

 

[SoundPeace]

[SoundPeace]

Here is my diary update:

 

https://drive.google.com/file/d/1cLayrlo33wid2Y-eoGhISpSi86_c7xhd/view?usp=sharing

[Altostrata]

13 minutes ago, SoundPeace said:

These effects always seem to appear either when I'm tapering (and get worse as the dose gets smaller even after staying months at each new dose) or when I'm off completely. So even if I reinstate at a small dose I won't get rid of these issues. In fact they get worse as the doses get smaller. I

 

If the arrhythmia is caused by withdrawal, which is possible, this is exactly what would happen -- it would get worse as the dosage goes lower. However, the arrhythmia could be coincidental -- caused by something else.

 

When people have withdrawal symptoms, we see that they are generally hypersensitive to drugs and sometimes other things, such as the supplements you're taking, even at dosages that previously caused them no trouble at all. It's possible that even low-dose reinstatement of escitalopram or citalopram (or another SSRI) might cause outsized adverse effects due to this sensitization.

 

Your notes indicate that you might have had an adverse reaction to atenolol. Your description of symptoms does not sound like akathisia. 

 

Please post your notes in plain text forum into a reply box in this topic, they're a lot easier to read and follow.

[SoundPeace]

 It's possible that even low-dose reinstatement of escitalopram or citalopram (or another SSRI) might cause outsized adverse effects due to this sensitization.

 

Yes, it would seem to be the case

 

Your notes indicate that you might have had an adverse reaction to atenolol. Your description of symptoms does not sound like akathisia. 

 

I'm giving Verapamil a go. I'll see if it does the job without too many adverse effects. I'll keep updating. 

Perhaps I am interpreting akathisia as anxiety/some agitation/feeling uncomfortable/fidgety.

 

Please post your notes in plain text forum into a reply box in this topic, they're a lot easier to read and follow.

 

Apologies for the link. I did try to copy and paste my text from my computer's Word document into the forum box but this option was denied to me again. I still don't understand why. So that's why I used a link. It's not ideal, I totally understand. Maybe there is a technical issue someone might be able to give me some help with. If not, I will see no other option than to write the text manually in the box from copying what I wrote in my Word doc. It is quite time consuming though. Maybe I can make it shorter. 

[SoundPeace]

 

Date is 06/08/23 (not 2024)

 

[SoundPeace]

Date: 06/08/24 - Part 2

18:00 Took Verapamil (forgot to mention I did too at the same time yesterday).

18:30 Dinner.

18:50 Some anxiety/depression and pins and needles appear, pulse 82 bpm and some PVCs. Some abdominal pain due to Verapamil.

19:50 Fell asleep.

21:30 Woke up.

23:30 Fell asleep.

05:30 Woke up. At first no symptoms. Then mind starts to race, with mind worms (usually a song), PVCs kick in followed by pins and needles.

[Altostrata]

Please post notes 24 hours at a time and include drug dosages.

 

If Verapamil is causing adverse effects, you will have to decide whether it's worth it. Could be a lower dose would cause fewer adverse effects.

[SoundPeace]

Date: 08/08/23

05:30 Woke up feeling not too anxious but then it worsened with palpitations + usual PAWS. 

07:00 Breakfast.

08:20 Took 40mg Verapamil. 

09:20 Uncomfortable PAWS: Tremor, anxiety (with 'ear worm' tune), tinnitus, pins n needles, aching

           quadriceps, brain fog. - But still more alert since stopping Atenolol.  

12:00 Meeting with Electro Physiologist. Recommends RF ablation for Afib and AFlutter. Will speak to

          GP to get it done through NHS. Says it's ok to take Magnesium, Folic Acid, Vitamin D, C

           supplements and ok to take either aspirin or paracetamol as painkillers for headaches when I

           asked him. 

14:00 Visited new workplace premises still in construction. Noticed several short AF/PVC/Extra Systoles

          (not sure which ones) all afternoon. 

17:00  Return home. Took Magnesium, Folic Acid, Vitamin D, C supplements.

18:00  Dinner

18:30  Took 40mg Verapamil.

18:42  Starting to feel some pins and needles (too soon to be from Verapamil I took about 10 min ago).

            More palpitations extra systoles/AF/PVCs.

20:39  Fell asleep

22:11   Woke up  feeling anxious with skipped  heart beats.

01:05  Fell asleep

05:54  Woke up  feeling anxious with skipped  heart beats.

[SoundPeace]

Apologies, I've only just realised I published my last post only 13 hrs ago. Will wait for next one tomorrow morning.

 

[SoundPeace]

Date: 09/08/23

05:54  Woke up feeling anxious with skipped heartbeats + usual PAWS.

07:30  Breakfast.

08:30 Took Verapamil 40mg.

09:30 Uncomfortable PAWS: Tremor, anxiety (with 'ear worm' tune), tinnitus, pins n needles, aching quadriceps, brain fog.

10:30  Online purchase of Aktia ambulatory BP monitor. Should receive in 2 days. 

11:30  Received callback from GP surgery pharmacist to discuss Verapamil dosage and its current ineffectiveness in lowering my heart rate + bp and preventing extra 

           systoles/AF/PVCs. He says I need to take Verapamil for at least two weeks for it to see it work before reviewing its dosage at which time a blood test needs to

           take place to make sure my kidneys are not being damaged (something neither the cardiologist or the electro physiologist mentioned even when I asked if

           monitoring was needed with Verapamil ?!). He also suggested taking 1/2 of 25mg Atenolol (it does work more instantly and hopefully at this dose I should get

           less side effects) on top of Verapamil 40mg x 2 to help reduce extra systoles/AF/PVC and to lower BP and HR whilst waiting for Verapamil to take effect. I will

           try this approach.

13:00 Went for walk to do some shopping. Difficult walk: derealisation/depersonalisation, tinnitus, pins n needles, fatigue, dull aching quadriceps, brain fog, non-stop
           'ear worm' tune in my head. Annoying.

14:00 Had some toast for lunch.

15:30  Went for another long walk. Same symptoms as on first walk + feeling tearful hopeless. Total distance covered today according to Fitbit: 9.02 miles. Feels odd I

            can get myself to do this in spite of my horrible PAWS. It does help to lift the mood though.

19:30  Took 40mg Verapamil.

20:03  Pins and needles return. Lying down listening to Dr. Josef Witt-Doerring on Youtube.

22:30  Went to bed

23:00 Fell asleep

[Altostrata]

First, I'm glad you saw an electrophysiologist before your cardio condition got worse.

 

If I were you, I'd firmly request a lower dose of Verapamil.

 

Since you're under care for the cardio condition and while you may have PAWS, it seems your most distressing symptoms are connected to the cardio condition and Verapamil, we don't need to see additional daily notes. It's probably best for you to allow your PAWS to resolve without other drugs.

[SoundPeace]

Thanks, I've now asked to be referred to the Cardiologist/Electro-physiologist I last saw for treatment.

 

I now need to find medication for my BP and Afib (in the meantime) that I can tolerate. It might mean a reduced combo of Verapamil and Atenolol. I need to speak about this further with the Cardiologist.

 

With regards to PAWS, the most uncomfortable feelings are paresthesia (burning especially) anywhere on my body. I've looked back on my notes for the last two years. Paresthesia appears every time during a drug dose reduction for a few weeks and then subsides. Anxiety increased steadily and progressively over the whole period of withdrawal and heart palpitations increased exponentially in the last two months before complete cessation. Propranolol was used to reduce the palps but with side effects feeling low, tired or spaced out. After last dose of escitalopram paresthesia settled in and stayed. 

 

I feel like I definitely experienced withdrawal symptoms from Escitalopram throughout the whole process. More recently I have felt a return of alertness, libido, better sleep and less depression. But I am also feeling more anxious and uncertain about my life direction whilst experiencing constant paresthesia with different levels of intensity throughout the day. The tinnitus, ear worms, aching quadriceps and brain fog vary from day to day. These symptoms seem very similar to those of GAD. I am finding it difficult to separate what is 'me' and what is due to the drugs. In the end I tend to settle for the idea that my natural predisposition to anxiety related issues, and side effects from hypertension/heart rate drug introductions, are currently amplified due to body system deregulation from long term SSRI exposure. This theory seems reasonable enough to me and in similar ways to others on this website. Sharing this idea with medical practitioners is usually met with a blank expression. 

 

 

 

 

[Altostrata]

16 hours ago, SoundPeace said:

More recently I have felt a return of alertness, libido, better sleep and less depression. But I am also feeling more anxious and uncertain about my life direction whilst experiencing constant paresthesia with different levels of intensity throughout the day. The tinnitus, ear worms, aching quadriceps and brain fog vary from day to day. These symptoms seem very similar to those of GAD. 

 

Your symptom pattern follows the course of recovery from withdrawal syndrome, which is slow and occurs in The Windows and Waves Pattern of Stabilization

 

You may be reacting with normal anxiety to your odd symptoms and other aspects of your situation. 

 

As a peer counselor, given your coincidental cardiac condition, I do not feel I can suggest any drug reinstatement. It may exacerbate your cardio condition or conflict with your cardio drugs.

 

On 8/2/2023 at 9:58 PM, Altostrata said:

....

Supplements that might support cardio health are fish oil, magnesium, taurine, CoQ10, vitamin D3, and green leafy vegetables for the folate. If you are low in B12, you might want to start with a tiny chip of a sublingual tablet and build up. Always try supplements one at a time at low doses because withdrawal can make people sensitive to supplements, too.

....

 

FYI I would get RF ablation only from someone trained in the Natale method and equipment.

[SoundPeace]

Hello,

 

It has been a little while since I provided an update. I was hoping to have healed and come back with some good news. Unfortunately this isn't quite the case. Here is an update on my progress since last August:

 

August 2023 - No sexual dysfunction, no IBS, but anxiety and depression.

September 2023 - back to work part/time after 3 week full time trial failure. Blood pressure rises significantly.

Doctor says it's caused by my anxiety and avises to return on SSRI to treat anxiety in order to reduce blood pressure. 

I ask to be prescribed Lisinopril to reduce blood pressure, which helps. I 'give in' to trying a new SSRI as I now fear Escitalopram after the horrible tapering experience. 

06 October 2023

Sertraline 12.5 mg (liquid) - Almost instant mood lift but too many side effects getting gradually worse: tremor, pins and needles, some sexual dysfunction, insomnia.

20 November 2023

Switch back to Escitalopram 2mg - Less/no sexual dysfunction; Better sleep; Tremor on/off, burning and pins and needles gradually increasing over time (face, eyes, mouth, head, arms, legs).

28 January 2024

Go up to Escitalopram 5mg with the hope that 'benefits' of drug will outweigh all the horrible symptoms. Result: all symptoms intensify to unbearable level. Need to drop back to lower dose.

09 February 2024

Drop to Escitalopram 3mg - All symptoms drop in intensity but with more nerve numbness. 

Started course of Transcranial  Direct Current Stimulation with Flow Neuroscience home kit. No apparent side effects, seems to help. 

18 February 2024

Drop to Escitalopram 2mg - Less/no sexual dysfunction; Better sleep initially but now having insomnia; Tremor on/off, burning and pins and needles gradually increasing in intensity over time (face, eyes, mouth, head, arms, legs) and now they are very uncomfortable. Sore leg muscles; tiredness; poor reading attention span; lurking anxiety/depression; spasms, shooting nerve pains. 

08 April 2024

Becoming increasingly uncomfortable with intense paresthesia and leg muscle aches. Insomnia is now back, with heart palpitations/flutters for the last 2 weeks. Having suicidal ideation. Feel lost and uncertain where to go from here. Was advised by Mark Horrowitz in February to return and stay at 2mg until I stabilise and then do a very slow taper over perhaps a year or two. Sometimes rarely take co-codamol (paretamol 500mg + codeine 8mg) x2 tablets to help when pain turns into restlessness. 

I was wondering if you were able to perhaps comment or offer any suggestions.

Many thanks.