catali: paroxetine withdrawal nightmare

[catali]

Hello! Seeking advice and support having discovered how dependent I am after over 20 yrs of taking paroxetine. Withdrawal symptoms of extreme sustained insomnia, excessive sweating and intense anxiety are making life unbearable and I am horrified at how ignorant I have been about my meds. I now realise GP probably made things worse by suggesting a change to mirtazapine before returning to paroxetine. GP suggested back to 20mg but I couldn't bare the thought of possibly having to repeat the withdrawal so decided on ½ dose (10mg). Not sure if I've done the right thing as still have severe symptoms after 7 days. I now realise all these changes were far too fast but do I hang on to this dose to see if I stabilise and how long do I give it?? I'm just beginning to realise that this is likely to be life changing....not what I'd planned at 58....as may well loose my job and it's a huge strain on family and friends. It's confusing and frightening. See gp on Thurs and feel it would be good to have an idea of what I should be aiming for re medication. He gave me propranolol (a beta blocker) for the anxiety but I've since discovered it could be contributing to the insomnia. Has anyone got any experience of that? With thanks and hoping to be able to share experiences!

[Songbird]

Hi catali, welcome to SA.  How did you taper off paroxetine, and how long were you off it before reinstating 10mg?  If you've only been back on for seven days, it may be a little early to see improvement yet.  I know it is hard to be patient when symptoms are bad, but patience is needed when your body is working to restabilise.

 

It would be helpful if you could create a signature with your med history, including all drugs, doses and dates (starting and stopping).  This will help us to help you as best we can.  You can edit your signature under your Account Settings.  See this topic for more info: Please put your withdrawal history in your signature

 

Doctors often seem to want to switch meds, but switching causes more confusion in the system, as they all work a little differently.  It's generally a better idea to reinstate the med you were on, as that's the one your body got used to.  

 

There is more information about reinstating here:  about reinstating and stabilizing to reduce withdrawal symptoms

 

There are non-med techniques that can help for anxiety and insomnia:

The Dr. Claire Weekes method of recovering from a sensitized nervous system

Non-drug techniques to cope with emotional symptoms

Tips to help sleep - so many of us have that awful withdrawal insomnia

 

Please post your updates here in your introduction topic.

 

[Petunia]

6 hours ago, catali said:

He gave me propranolol (a beta blocker) for the anxiety but I've since discovered it could be contributing to the insomnia. Has anyone got any experience of that? With thanks and hoping to be able to share experiences!

 

Yes, I tried propranolol while in withdrawal. I'd taken it previously on occasions for anxiety with no problems at all, but once my nervous system became sensitive during withdrawal, I started having bad reactions to it. For me, it caused huge swings into depression after its effects wore off.

 

Here is our discussion topic with posts from other members: Beta Blockers: Propranolol etc

 

[catali]

Thanks Petunia. I think it helps to calm the intense anxiety symptoms during the day but I'm so desperate to sleep more than an hour or so per night. Difficult to know which is worse! Did you find an alternative to help the anxiety? Mine is so intense at the moment that I can barely function for most of the day. 

[Songbird]

You might try some relaxation exercises, which are great for calming the nervous system, helping to reduce anxiety.  For example: progressive muscle relaxation, gentle yoga, calming breathing exercises, meditation, guided visualisation, etc.  I like to use recordings with gentle music and an instructor's voice telling me what to do so I don't have to think about it.   You could try a few out and see what works for you.

[catali]

I just tried replying to your last post, songbird, but can't see it now....maybe I lost it? 

So, briefly, I was 12 weeks off seroxat before reinstatement. This was when was put on mirtazapine, ramped up to 45mg then 2 week taper to go back to seroxat. I forget the details of the original seroxat taper but far too quick..over 4 weeks I think ..20mg to 10mg, then tabs on alternating days. Not good I now know! It was my guess to go back to 10mg rather than full 20mg dose. Just couldn't bare the thought of full WD again. Do you think I did the right thing? Should I just try to stabilise on this dose? Surely more dose changes now risk making things worse? Thanks!

[Songbird]

Hi Catali,  please would you summarize your history in a signature - all drugs, doses, dates, and discontinuations particularly those from the last 12 - 24 months.

• A list is easier to understand than one or multiple paragraphs
• Include ALL drugs, doses, and dates (starting and stopping)
• Please leave out symptoms and diagnoses
• Any drugs prior to 24 months ago can just be listed with start and stop years
• Please use actual dates or approximate dates (mid-June, late October) rather than relative time frames (last week, 3 months ago)
• Spell out months, e.g. "January" or "Jan" (as 9/1/2016 can be interpreted as 9 Jan 2016 or 1 Sept 2016)
• Link to Account Settings – Create or Edit a signature.

I think you've probably done the right thing by reinstating, but we need to see how your body is responding to the dose.  How have you been feeling since reinstating?  Have your symptoms changed for the better or worse?

[catali]

Hello songbird! Have done signature. Hope it makes sense.....first version wouldnt post so its a bit cramped. with hindsight all those rapid changes were a terribly bad idea but was following GP instructions. My ignorance didn't help. Can't really tell if there is much change to symptoms yet. Something seems slightly better one day then much worse the next. Think I'm a little less anxious but more depressed.  Scary obsessive negative thought patterns. Cant make even simple decisions. Sleep maybe 2-3 hrs rather than 1-2 hrs per night. Grateful for yr input. Hope you can make sense of the signature. I'm not brilliant with IT stuff ...

[catali]

Have I done that signature right? Got a bit confused between signature and about me fields. Eeek!!

Edited June 22, 2018 by catali
Clarity

[Songbird]

Thanks for creating your signature.  I have a few questions:

 

50mg amitriptyline (for fibromyalgia) from c.2004, 2mg doxazosin (blood pressure),indapamide (blood pressure), propranolol 10-20mg as required (up to 3 times a day)

 

It's a little unclear when you started each of these meds - have you been taking all of these meds since 2004?

 

Please can you put all of your current meds into the drug interactions checker and copy/paste the results here in your intro topic.

 

[catali]

Sorry for delay Songbird...have had a really bad few days...in answer to your questions amitriptyline from c 2004, blood pressure meds and propranolol from c. 2012.

 

I tried the interaction checker but it produced pages and pages....too much to copy and paste here I think. Most were insignificant/known eg the blood pressure meds as bld press is monitored. 

 Major (1)

 

 Moderate (8)

 Minor (0)

 

 Food (2)

 Therapeutic Duplication (1)

The major interaction was paroxetine and amitriptyline which I also knew about. GP and pharmacist were happy about the combination when prescribed. I have been taking both for years without any noticeable problems (until this withdrawal crisis). I now think the paroxetine has caused gastritis and the amitriptyline probably caused the high blood pressure. Sounds as though I need to get off one before the other though.

 

Does that help? 

[catali]

A friend has given me some melatonin tablets - 5mg. They have got me from c.2hrs to 5hrs sleep. I feel less confused, less anxious but more depressed. Huge step forward. Just to check it was the melatonin I didn't take one last night until 2am when I couldn't stand the idea of no sleep and gave in to temptation.

 

Is it a good idea though? I've now discovered that they are not approved in the UK. Also should prob try a much lower dose. Can I tell my GP what I'm doing? Is there any consensus of opinion on using melatonin to counter paroxetine withdrawal? Severe insomnia does seem to be a feature and without the melatonin Im not sure there would be much improvement in my acute withdrawal symptoms.

 

I've just read the info on sensitisation. Maybe I've gone back on too high a dose (10mg - half my original dose)? I had no info at the time so it was a complete shot in the dark. I was hoping to stabilise on this dose before trying any other changes. How long should I give it?

[Songbird]

 

On 6/30/2018 at 10:48 AM, catali said:

in answer to your questions amitriptyline from c 2004, blood pressure meds and propranolol from c. 2012.

 

Thanks - please can you add these dates to your signature so we'll know they weren't recent additions.  I'm a bit confused about the propranolol as in your first post you said your doctor prescribed it recently for withdrawal anxiety?

 

If the melatonin is significantly helping your sleep, then I think it should be fine to take it.  The 5mg dose might be too much, and could potentially be contributing to the depressed feeling, so I would try a lower dose (e.g. half or quarter tablet) and see if you can still get good sleep.  See our topic: melatonin for sleep

 

I've also found that when anxiety begins to settle down, feeling more depressed can take its place - I think this could be what happens in the body when things begin to calm down after a period of high anxiety - I guess maintaining a state of high anxiety is likely quite tiring for the body.

 

If your anxiety and sleep have improved to some degree since reinstating, that seems like a good sign.  It may take some time - perhaps a few months - to restabilise - especially as you had the extra confusion of mirtazapine in between - so you will need to be patient.  It's "normal" for things to be up and down for a while.  See: the windows and waves pattern of stabilization

[catali]

Thanks for all the info! I've been on and off propranolol in times of anxiety for a few years. I now think the increasing patches of anxiety might be due to paroxetine loosing it's effectiveness over the years.

 

I agree that depression often seems to follow anxiety. Ironically that was often the case with my original depressive illness.

 

Is there any info about the long term effects of being on paroxetine or SSRIs in general? Even before this withdrawal I was suffering from pins and needles in hands and feet and significant leg weakness. Neurologist thought SSRI an unlikely cause and suggested chronic fatigue syndrome. He thought after initial side effects had resolved it was unlikely there would be any further problems from paroxetine. Symptoms have been getting worse and I'm worried they may have become permanent. I also feel my short term memory has become quite bad.

 

It makes me feel that getting off the drug is quite important. I know I have a long way to go but I'm already worrying about further stages of withdrawal. The thought of going through this again is horrendous and I fear neither my work or my relationship would survive anothr episode as bad as this.

 

It feels like quite a major dilemma. I also wonder if my age (58) doesn't help in adapting to new doses. The only consolation is that maybe I know more about what might happen. It also means giving up the medication that probably helped protect me from recurrent depressive illness. It all seems pretty scary really.

 

Would be really glad of your thoughts. Thanks again for your input.

[catali]

Eeek. Just scared myself reading that amitriptyline, which I take as well as paroxetine, could be the cause of cognitive impairment. I Def think my short term memory has deteriorated in recent years.

 

I'm not stable on the reduced paroxetine dose yet, but it makes me think the next thing I should do is reduce the amitriptyline rather than try to get off the paroxetine completely. It is there to treat fibromyalgia and when I went on it it made a huge difference to both pain and energy levels. Now what on earth do I do about that?

[Songbird]

Yes, after 20 years at 20mg, it is quite likely the paroxetine has pooped out.  I would try not to think too far ahead at this stage - the first goal is to restabilise. 

 

This is a time to be be as kind to yourself as possible, be very gentle with your system, treat yourself with the greatest care.  Use the non-drug techniques such as relaxation exercises, positive self-talk, and so on, to calm your nervous system.  Avoid chemical stimulants (caffeine, alcohol, artificial sweeteners, etc.), and anything else very stimulating such as scary movies or TV.  Strenuous exercise can be too stimulating, but gentle exercise (such as walking) is good.

[catali]

I suppose it's better to get off the paroxetine completely before tackling the amitriptyline? In some ways, if the amitriptyline is causing me memory and cognitive problems, I'm rather desperate to reduce the dose as soon as possible.

 

As they work in different ways is there any difference in the withdrawal effects that are known about? I know if I miss a dose of amitriptyline I suffer extreme fatigue.

 

I think I've been traumatized by the last few months and scared of making any change at all. On the other hand, I've been off work for a long time now so there is quite a lot of pressure there too. It doesn't make it easy to relax or take any more time than is necessary! 

[Songbird]

It's generally recommended to taper one med at a time.  Some people here have done very slow tapers of two (or even three) meds at the same time.  One problem with this is that you then can't tell which one is causing which withdrawal symptoms.  Some people have tapered one med for a while to get the dose lower, then switched to tapering the other med down for a while.  This could be an option for you if you're worried about having to taper off one completely before tapering the other.

 

Here is our topic about tapering multiple meds:  taking multiple psych drugs - which drug to taper first

 

 

[catali]

At long last I have an appointment this week with a Dr who specialises in mental health. So I will have to try to explain this complex situation once more and hope that I get some kind of sympathetic understanding. My fear is that they resort to wanting to prescribe more or alternative meds. That is definitely not a route that I can bare to follow. Its very difficult to describe clearly the intensity of those appalling withdrawal symptoms.

 

The intense anxiety and insomnia have v slowly reduced their tight grip on me leaving me feeling pretty badly depressed. I'm struggling badly with motivation and don't seem to be able to cope with any decisions however small. I think I'm traumatised by that withdrawal experience.

[dj2010]

25 minutes ago, catali said:

At long last I have an appointment this week with a Dr who specialises in mental health. So I will have to try to explain this complex situation once more and hope that I get some kind of sympathetic understanding. My fear is that they resort to wanting to prescribe more or alternative meds. That is definitely not a route that I can bare to follow. Its very difficult to describe clearly the intensity of those appalling withdrawal symptoms.

 

The intense anxiety and insomnia have v slowly reduced their tight grip on me leaving me feeling pretty badly depressed. I'm struggling badly with motivation and don't seem to be able to cope with any decisions however small. I think I'm traumatised by that withdrawal experience.

 

even a doctor who specialises in mental health will probably have little knowledge of antidepressant withdrawal, the mods on here have more knowledge than any doctors on this subject,

 

I hope you find some relief soon

 

take care

[catali]

I know. I can only hope that at least they might be sympathetic to the situation. I have to follow up every possible avenue of help even if it is largely because I need to be able show I am doing everything possible to get back to work....which I am. It would be good to have someone local to talk to face to face. Surely they must have some idea of what these meds do to us! If not it might just be my small attempt to bring it to someone's attention!

[catali]

OK! Very depressing morning! GP really has nothing to offer....says lets see what mental health team 

Dr has to say.....by coincidence that appointment is just a few hours later.

 

So mental health specialist listens to my tale of woe and promptly suggests cutting the paroxetine dose by half for 2 weeks and then half again. I say that I haven't even stabilised onto the current dose and that I'd prefer to reduce much more slowly. She says that that would take months and she can only treat me for max 4 weeks; that I seem to have already decided what my treatment plan should be and that if I am unwilling to try any alternative antidepressants there isn't anything else she can suggest. She then also said that there should be no problems coming off amitriptyline and that there was usually a psychological element to having fibromyalgia anyway. She did concede that occasionally they came across people who had withdrawal symptoms but it certainly didn't happen to everyone. She told me there was no proof that any of my other health problems could be attributed to taking 2 antidepressants for over 20 years and if I wouldn't take other antidepressants there was little she could advise to avoid returning to the pattern of recurrent depression I suffered from before the SSRIs were prescribed.

 

All of the above may be true but I came away in absolute despair at anyone in the health service having any  understanding of how awful withdrawal is let alone being able to provide any effective support.

 

I know I was naive to think it might be different, but I still feel devastated that so much of what I tried to explain was so completely dismissed. 

 

Came away with a scrip for liquid paroxetine and instruction to take 4mls per day (should be 4.5mls for a 10%reduction), but there is no way I'm going to try to reduce the dose just yet. I still only get 4-5 hours of sleep a night.....a huge improvement but not ideal. I'll see how I feel in a week or two. I need to be well enough to get back to work in Sept or I won't have a job to go back to.

 

I'm very aware I am now quite depressed and struggling through the days, but I could really have done without this!

[catali]

dj2010 I take it your experience was similar?

 

[dj2010]

16 minutes ago, catali said:

dj2010 I take it your experience was similar?

 

 

yep my doctor tried to take me off seroquel which i had been on for 15 years with a 2 week taper, it left me bed bound, I finally managed to taper myself slower and have been off all drugs since April 2017, I have not told my doctor I am off my meds and still collect them every month, only so I can continue receiving PIP payments,

[Altostrata]

Hello, catali. Are you feeling better now than a month ago?

 

What is your sleep pattern?

 

What is your daily symptom pattern? Please keep daily notes on paper about your symptoms, when you take your drugs, and their dosages. Use a simple list format with time of day on the left and notation (symptom, drug and dosage) on the right.

[catali]

On 7/19/2018 at 7:08 PM, Altostrata said:

Hello, catali. Are you feeling better now than a month ago?

Hello and thank you for the prompt to post again.

 

I have been keeping brief notes of meds and symptoms.

 

I'm now sleeping about 6 hrs a night only waking once or twice and this is now without using any melatonin.

However, I'm still sweating uncontrollably which makes going out v difficult. The anxiety isn't nearly as intense but I think I have to admit to being pretty badly depressed. My short term memory seems to be very badly affected and I worry that this is from the long term use of amitriptyline and may be permanent. Concentration is v bad; easily distracted, difficult to read etc...basically reduced cognitive function.

 

I also seem to have developed very extreme mood swings with patches of intense frustration/anger/distress. I'm ashamed to say that sometimes that's been directed at my long suffering and usually patient partner. He's also finding things extraordinarily difficult and is probably pretty depressed, too. Doing my best to keep things as calm as possible.

 

I'm wondering how I know when I'm stable enough to start reducing the dose again? I haven't dared to change anything yet.

 

Various medics I've seen keep quoting the 6-8 week withdrawal or changing to an alternative SSRI/SNRI. When I explain how horrific those ideas are to me they seem to think I'm being unreasonably awkward or beyond help.

 

I see a psychiatrist next week. I still have this vague hope that she might understand a bit more about WD and/or not be part of this conspiracy of silence/disbelief that seems to pervade the health service. Do they really not believe how awful WD is? or is it fear of admitting that the meds I've been on for so long are damaging?  It's all so bewildering and distressing!

[Gridley]

That's very good that your sleep has improved as well as the anxiety.

 

We recommend members hold for three to six months to stabilize.   In some cases it can take quite a bit longer.  Time is the greatest cure, and stability ultimately will come.

You've made a lot of changes since February, and your taper was much faster than we advise.   We recommend tapering by no more than 10% of your current dose every four weeks.

Many people have to taper much more slowly.

Why taper by 10% of my dosage?

 

Brain Remodelling

 

Unfortunately, very few psychiatrists know anything about withdrawal.  Here are some tips for taking with your doctor.

 

How do you talk to a doctor about tapering and withdrawal?
 
What should I expect from my doctor about withdrawal symptoms?

 

We don't recommend a lot of supplements on SA, as many members report being sensitive to them due to our over-reactive nervous systems, but two supplements that we do recommend are magnesium and omega 3 (fish oil). Many people find these to be calming to the nervous system. 

 

Magnesium, nature's calcium channel blocker 

 

Omega-3 fatty acids (fish oil) 

 

Please research all supplements first and only add in one at a time and at a low dose in case you do experience problems.

 

While it is often a first response to stress to take a B-Complex, in withdrawal it can be overstimulating.

 

Hypersensitive to B Vitamin or B-Complex  

 

Many members have found the non-drug techniques in the following links helpful in dealing with withdrawal.

 

The Dr. Claire Weekes Method of Recovering from a Sensitized Nervous System

 

Non-drug techniques to cope with emotional symptoms.

 

[Altostrata]

Good to hear you're doing a bit better.

 

I am concerned you're having a drug-drug interaction. What is your daily symptom pattern? Please keep daily notes on paper about your symptoms, when you take your drugs, and their dosages. Use a simple list format with time of day on the left and notation (symptom, drug and dosage) on the right.

 

On 6/29/2018 at 3:48 PM, catali said:

I tried the interaction checker but it produced pages and pages....too much to copy and paste here I think. Most were insignificant/known eg the blood pressure meds as bld press is monitored. 

 

Please put ALL your drugs in the Drug Interactions Checker https://www.drugs.com/drug_interactions.php
and copy and paste the LINK to the report in this topic.

[catali]

On 8/3/2018 at 9:24 PM, Altostrata said:

 

I am concerned you're having a drug-drug interaction.

Here is the link:

 

https://www.drugs.com/interactions-check.php?drug_list=1800-0,168-0,1327-0,934-0

 

I monitor blood pressure at home so that is reasonably balanced most of the time. The sweating has got completely out of control since the WD catastrophe.  I find it hugely distressing and haven't found any immediate solution for it.

 

I'm now pretty convinced the fibromyalgia, chronic fatigue, gastritis and memory problems are due to the ADs. I'm desperate to get off the amitriptyline as I read it causes cognitive difficulties long term, but there seem to be reasons to get off the paroxetine first. What do you think?

[Altostrata]

Thank you for posting the link.

 

Looking at the potential interactions, I am not surprised your poor body is trying to compensate by sweating. That is an unholy cocktail.

 

When was the last time a doctor reviewed your blood pressure drugs? You are now taking THREE DRUGS that lower blood pressure. Plus propanolol -- how often do you take that?

 

Do you have hypertension? When was the last time you have an electrolytes blood panel to check for hyponatremia?

 

Please review the side effects of each of your drugs on drugs.com. Here is the link for amitriptyline https://www.drugs.com/sfx/amitriptyline-side-effects.html One of the common side effects is increased sweating. Do you have others.

[catali]

Yes, I'm sure I have a lot of symptoms from the drugs. Principally pins & needles and weakness in arms and legs,  sweating, tinnitus, occasional double vision and gastric/urinary problems. One of the most concerning is the huge difficulty with concentration and short term memory.

 

This is why I want off the meds....but safely, of course.

 

I'm pretty sure the amitriptyline is causing the hypertension thrrfore necessitating the doxazosin and indapamide.

 

  The lower dose of paroxetine seems to have improved the gastritis and I haven't had any restless-legs episodes which used to be quite frequent.

 

I've stopped taking the propranolol for the time being at least. It did help reduce the anxiety a bit but made me even weaker.

 

I'm getting pretty convinced that the diagnoses of fibromyalgia and chronic fatigue should be attributed to the ADs although I can't persuade the medics of this.

 

Have nerve conduction tests today. I don't think it will show up anything which will further convince neurologist that I have chronic fatigue syndrome.

 

 

[catali]

On 8/5/2018 at 10:32 PM, Altostrata said:

Thank you for posting the link.

 

Well, after long talk with psychiatrist I have agreed to try a drop from 50 to 45mg amitriptyline.

 

She thinks I can't possibly have any effects from this but could go back up if I want to, or down further if ok after a month.

 

I hope she's right. She talked about getting the amit. down to something like 25mg before doing anything about reducing the paroxetine again.

 

She understands that I've been thoroughly traumatized by the WD experience but still wanted to persuade me that an alternative "new" AD is worth trying and better than going back to suffering recurrent depression.

 

I'm thoroughly scared by either option tbh.

 

She agreed that it was possible that tricyclics could  cause cognitive problems but though my dose too small to have an effect.

[Altostrata]

Well, she's wrong on all counts -- obviously, that combination of drugs is having a significant effect on you. She clearly has not been monitoring your drug-drug interactions, either.

 

If you keep on asking her permission to taper, you may find this gets you into trouble, eventually she may balk. You might consider maintaining a relationship with her so you can get your prescriptions refilled while you taper on your own. This may mean not divulging all detail.

[ChessieCat]

These topics might be helpful:

 

How do you talk to a doctor about tapering and withdrawal?

What should I expect from my doctor about withdrawal symptoms?

[catali]

Hello! Kind of touching base here and looking for some confirmation to help me  through this patch. I'm still very anxious and can really only be described as rather badly depressed. Can this still be withdrawal? I realise it may take a long time for the serotonin system to readjust and I definitely don't want to increase or add to my meds but to other people it really looks like I'm depressed because I've reduced the seroxat dose. Its really hard to keep having to justify why I don't want to rely on antidepressants. People WILL still suggest trying an alternative, but I'm pretty sure they are all actually very similar. The depression is pretty bad now and I'm struggling to get through each day. Would love some words of wisdom and comfort if someone can!

 

[catali]

Some advice please: I’ve been prescribed a corticosteroid inhaler (beclometasone) because of increasing breathlessness. 

I am getting cold feet about using it because of potential side effects. I had a major paroxetine withdrawal crisis in 2018 and am still trying to taper very slowly from it. Currently stable at 7.5mg but each drop I make causes significant difficulties. 

Does anyone have any knowledge about possible interactions?

TY