Tapering progress so far...

[Songbird]

Hmm, the constant underlying anxiety is back, unfortunately. I think it is a combination of stress and a sensitive nervous system. Still having a huge energy slump mid-to-late afternoon and having to lie down for a nap. I have a vague memory that this afternoon napping thing happened a while back and it didn't last forever, so maybe this is just another phase. Sleep hasn't been as good, but I think the naps kind of mess up normal sleep rhythms a bit.

[GrandmaD]

I really do believe now and experienced that other stress factors make the tapering worse - and longer, unfortunately!

I think it is good to nap after lunch. I have a 1 hour "rest" and sometimes I sleep and sometimes not. If it interferes with sleep at night (can take up to 2 hours to get off) I tell myself the rest is good.

Getting up to the loo (sometimes 2 or 3 times during that 2 hours) helps me to get off to sleep.

Hope things settle down for you again real soon.

[Songbird]

Yeah, I tell myself that it doesn't matter too much if I can't get to sleep for a while, as I already got extra sleep that afternoon.

[Betsy]

Songbird,
How are you doing? Thinking about you tons!
Betsy

[Songbird]

Hi Betsy! Hope you are okay! I'm doing okay, but still not stable on this dose. My nervous system is very sensitive to stress. I'm having a moderate amount of psychological anxiety and some physical anxiety, mainly in the early mornings. I feel hideous for a couple of hours from when I wake up, then I begin to improve and by about 10:30 a.m. I feel okay. I guess I'll be staying at this dose for quite a while. It has happened a couple of times before and eventually I did stabilise, so I'm optimistic at this stage that eventually I will stabilise here as well.

[kizzie]

Hi Songbird - just popping in to say hello. Have you stabilised yet on this dose? Hope the anxiety has reduced since your last posting.
Take care

[Songbird]

Hi Kizzie! No, still not stable. Every morning I still wake up with mild anxiety or a kind of anxious depression, but usually better after an hour or so. I'm just staying at the same dose.

[kizzie]

Glad it gets better as the day goes on. Fingers crossed will all even out for when you wake up too really soon. Its such a drag isnt it !

[Songbird]

For a while I was improving more and more, but then got a bit worse again - I've realised it depends on what is happening in my life and how stressful it is. Basically my system is extremely sensitive and overreacts to anything even slightly stressful. Can't even think about another drop while I'm this sensitive, as I just wouldn't be able to handle a normal life with all of its stressors. I haven't been going to Neurolink this year, so I'm finally going back tomorrow, hopefully that will help to calm down my nervous system. Looks like this is going to be another year like 2010, when I stayed at the same dose almost the whole year.

That said, I'm doing okay for the moment. Just very mild anxiety and mild depression at times. Mood swings a lot, periods of tearfulness. Sleep still good. Mornings have been better, but as I said, it depends on what is happening in my life. Some of the things I've signed up to do make me very nervous, and in my hypersensitive state this can bring on some anxiety. I haven't pulled out of anything so far, just toughed my way through it. So I keep slogging onwards.

[lotusflower]

Songbird,

Your posts have helped me out so much during this most difficult journey in my life. I, like you, am very very sensitive to every single drop and you are one of my role models for keeping it slow.
Sending hugs and cheering you onward, best, joanne

[Songbird]

Thanks, Joanne! It looks like your taper is going well. I've decided my goal now is to be off this drug sometime before I die! At the rate I'm going I'll probably be about 80 by then. I feel like I can't give up, I've just got to keep trying, no matter how long it takes. I feel like even if for some reason I don't manage to get all the way down to zero, at least my dose is much lower, and that makes it worthwhile. I'd rather be on 5mg than 20mg.

[Timinjapan]

Songbird,

Let's all pledge to get off this drug before we die, or else die trying.

My plans to drop further are on hold, as I don't think I'd be functional if I felt any worse, and I have dependents! Nervous system hypersensitivity seems to be the main problem for quite a few of us.

I hope Neurolink will make things a bit easier for you. And maybe you could do an audit of your main stressors and take a rain check on some of them? It's amazing how a little bit of stress at the wrong time can have the nerves vibrating all day.

[lotusflower]

Originally Posted by Timinjapan

Songbird,

Let's all pledge to get off this drug before we die, or else die trying.

Amen.

[GrandmaD]

Songbird, has it helped a lot going down in 1mg drops? What taper did you start with and what made you change the %? Has it been worth it? I am still wondering if I should try a 2.5% taper.

[Songbird]

Hi GrandmaD! I'm now doing 0.1mg drops. It is because I've never managed to get below 5mg without crashing. I figured if I go extremely slowly in tiny amounts, my brain might be able to adjust to the drops. It is helping me so far, but the proof will be whether I can get down below 5mg and eventually to zero.

I have always managed to stabilise eventually. Sometimes it has taken a long long time but eventually I feel stable and I just know I feel ready for the next drop. I never drop before I get that feeling. I don't know what to recommend in your situation. There would be no harm in your trying smaller drops and see whether they work any better for you. Generally, a smaller drop is less risky than a bigger one.

[Songbird]

The Neurolink has made a big difference in my adrenal response. Partly I feel better lately because it is holidays and the stress is off me. But now even when I have anxious thoughts, since the Neurolink my adrenal response is very subdued, whereas before I could feel my adrenals kind of 'fizzing'. I wish I'd made the time to go back earlier! The morning anxiety is pretty much gone now and all the depression is gone, I'm feeling good. It is tempting to want to drop soon, but I'm also tempted to stay here for a while and just enjoy feeling really good for a while!

[Timinjapan]

Songbird, it's great news that the Neurolink has helped you feel good. It really cheered me up to read of your improvement, as you've felt a fair amount of anxiety and depression in the months since the last drop. Please revel and sing sweetly while you can.

[Songbird]

Thank you, Tim! It has cheered me up too. During the bad patches I always end up worrying that this miserable person is the 'real' me and this is what life unmedicated would be like. Then things improve and I start to feel 'normal' and I realise my mind was playing tricks on me.

[GrandmaD]

Originally Posted by Songbird

Hi GrandmaD! I'm now doing 0.1mg drops. It is because I've never managed to get below 5mg without crashing. I figured if I go extremely slowly in tiny amounts, my brain might be able to adjust to the drops. It is helping me so far, but the proof will be whether I can get down below 5mg and eventually to zero.

I have always managed to stabilise eventually. Sometimes it has taken a long long time but eventually I feel stable and I just know I feel ready for the next drop. I never drop before I get that feeling. I don't know what to recommend in your situation. There would be no harm in your trying smaller drops and see whether they work any better for you. Generally, a smaller drop is less risky than a bigger one.

I meant .1mg drops, sorry! Have you noticed you are coping better with these lower drops than previous drop?

I am seriously considering trying 2.5% next time, just for an experiment. I haven't heard anyone come forth as yet and say that a slower drop made for an easier taper, so I'll just have to try it myself. If it is no different, do you think it's safe t go back UP to 5%? I am worried about changing the tapers because it seems that consistency is a good thing.

When yo say you have anxiety, what does that mean? How do you feel?

[Songbird]

Originally Posted by GrandmaD

I meant .1mg drops, sorry! Have you noticed you are coping better with these lower drops than previous drop?

It isn't so much that I didn't cope well with previous drops, it is because from past experience I know that it gets harder and harder as my dose gets lower. I can do much bigger drops at higher doses and hardly feel them. As my dose gets lower and it gets harder, I do smaller drops. I know 0.1mg drops probably sound ridiculous to some people, however last taper I was doing fine at 5mg and crashed badly going down just 0.5mg to 4.5mg. So I am now doing 0.1mg drops in the hope that those are small enough for the brain to be able to adjust to without crashing.

It seems that for some people there is a dose range where the brain is most sensitive to changes. I believe it is kind of a borderline between where the drug 'works' and where it stops being effective because there just isn't quite enough of it. So it isn't so much about the change in the actual dose, it is about how much that affects the brain and how difficult it is for the brain to adjust to the changes.

Originally Posted by GrandmaD

I am seriously considering trying 2.5% next time, just for an experiment. I haven't heard anyone come forth as yet and say that a slower drop made for an easier taper, so I'll just have to try it myself. If it is no different, do you think it's safe t go back UP to 5%? I am worried about changing the tapers because it seems that consistency is a good thing.

I think it depends on the person. If you are not in poop-out, then a slower drop generally does make for an easier taper. Smaller drops with plenty of time to stabilise in between makes it easier for the brain to adjust.

For people in poop-out, it isn't quite as simple. I'm not in poop-out, but I've seen posts by others who have found that sometimes you can feel worse if you go too slowly. This may be because when tapering in poop-out, you get w/d symptoms after your dose drop, but once you stay on one dose for a while you begin to get tolerance w/d again. Some people tapering in poop-out have found that they can find a pattern for tapering - they drop, go through some w/d, begin to feel better, then begin to feel worse again. So they adjust their taper so that they start their next drop around the time they would begin to feel worse. I've also seen people in poop-out report experimenting with different percentages and finding that some work better than others for them. It is an individual thing and could be different for each person. I'm just repeating things I've read here, I haven't had first-hand experience with this as I am not in poop-out.

Consistency is a good thing, and a lot of people get into trouble by changing doses around by too much too quickly. However, I think changing between 5% and 2.5% drops would be fine. You need to look for patterns in your taper. Are you stabilising between drops? Do you feel better when you stay longer on a dose? Or worse?

Originally Posted by GrandmaD

When yo say you have anxiety, what does that mean? How do you feel?

Well, there are different kinds and levels of anxiety. There is psychological anxiety, which is basically just fear and worry, coming from fearful thoughts. Especially things like 'what if' thinking.

Then there is the physiological response to fear, which involves the sympathetic nervous system, commonly known as the 'fight or flight response'. The hormone adrenaline is also released, and produces a whole range of physical symptoms, such as the heart pumping faster and harder, changes to breathing, circulation, digestion and so on. This is good if you have to get away from a bear or fight an enemy, but not so good if the enemy is just a fearful thought inside your head.

Normally this response is in proportion to the stimulus, but in some people the nervous system becomes 'sensitised' and over-reacts, producing a huge 'fight or flight' response. This sensitisation can be caused by many factors (acute illness, chronic stress, surgery, post-partum hormonal changes, and others...and of course anti-depressant withdrawal).

It makes sense that this appears in w/d, because the drug worked on anxiety initially by dampening down the nervous system response. I think of it like you are driving a car around with the handbrake on. You have to push the accelerator much harder to get the car to move. If somebody then took the handbrake off, all of a sudden your car is really speeding. You then have to realise that you need to adjust by backing off the accelerator.

The trouble with anxiety is that because the physical response is a fear response, the brain interprets it as fear. This keeps a vicious cycle going where the fear produces more of the physical response which produces more fear and so on. The key to breaking the cycle is to learn to not fear the physical response. What has helped me the most is learning to feel the physical symptoms as just physical symptoms. So I go through the body listing each physical sensation (fizzing feeling in tummy, tight feeling in throat, dizzy feeling in head, pounding heart, etc.). I've noticed that when anxiety hits, it just feels like one big feeling, like a wave of doom. Breaking it down into identifiable parts takes away that wave of doom feeling.

The other thing that helps is to encourage the relaxation response, the opposite to fight or flight, so that the nervous system calms down and gradually desensitises. Relaxation exercises are good for this. Also, when it is really bad, avoiding anything that ramps up the nervous system - scary TV, strenuous exercise (gentle exercise is good though), caffeine, alcohol, even scary books. When I say scary, even just mildly suspenseful stuff can be too much for a really sensitive nervous system.

Wow, I've waffled on far too long. Anyway, lately my anxiety has been pretty mild stuff and I haven't done anything specific for it as it is quite bearable as a background thing. Not much worse than having a few nerves before performing at a concert or a job interview or something like that. It is annoying but I'm not letting it stop me living a normal life.

[GrandmaD]

Wow, no, you have not waffled on too much! That is a really good explanation of anxiety, especially the car bit! I have had trouble figuring it out and believing that I have anxiety, but what it is, is one word to sum up a whole lot of things! So it is the brain's response to a perceived threat which is the drop/taper, right? And that send's the body into crazy mode by the sound of it. Okay, so I am being more convinced that a lower drop might help my brain not to feel so threatened.

Can you explain simply then poop out because it does not make any sense to me or hubby that if the med is not working any more - then you should be able to stop taking it. If it is still affecting your brain and if your brain notices a drop, then it must be still working. That's how we see it, anyway!

[GrandmaD]

Okay, I see that not all people find it easier the longer they go on their taper, and that for some, it gets harder. Hmm not sure I like THAT. I guess you don't either! Just something I need to be aware of.

I am glad for that bit you said about going longer on a taper and it getting worse, because I notice that with mine. I get to about 8-10wks and begin to see some improvement in some areas and then other areas get worse again! So that explains that, thanks heaps!

Well, I think I am now leaning more and more towards 2.5% just for an experiment next time. I appreciate your time, thanks and hope you can continue this time without crashing. I'm waving you on!

[Timinjapan]

Songbird, you explain these things so clearly and simply. That's a rare talent.

We all have our own stock of fearful thoughts and "what ifs", and it's a good idea to become familiar with them in order to break our identification with them (we are not our thoughts/thoughts are not real, etc.), and it also does us a power of good to encourage the relaxation response. One highly recommended way of doing this is through meditation, although meditation is not "one" thing. It could be one of a thousand ways of breaking the cycle of constantly believing our own internal chatter. It could take the form sitting still and practicing breathing, or reciting a mantra, saying a prayer, doing stretching exercises, or washing the dishes "mindfully". We Paxil poppers and recovering ex-PPs need help to cope with the bumpy road we're on, and getting the relaxation response on our side is a must.

[Songbird]

Originally Posted by GrandmaD

So it is the brain's response to a perceived threat which is the drop/taper, right? And that send's the body into crazy mode by the sound of it.

The body is constantly keeping all its systems in balance. Neurotransmitters are used all over the brain and body in various systems. When you drop dose, it changes neurotransmitter balance in synapses. In some of us, it tips the balance of sympathetic and parasympathetic over into sympathetic dominance. The sympathetic system becomes too active, putting us into a state of anxiety, or 'fight or flight' mode. We feel fear (or the physiological response to fear) all the time, even though there may be no bear or enemy in sight. This is why some of us talk about 'physical anxiety' - because w/d can do this without there being any actual threat or fearful thought, simply a change in neurotransmitter balance.

Originally Posted by GrandmaD

Can you explain simply then poop out because it does not make any sense to me or hubby that if the med is not working any more - then you should be able to stop taking it. If it is still affecting your brain and if your brain notices a drop, then it must be still working. That's how we see it, anyway!

SSRI poop out is tricky to explain because nobody is quite sure how it works - mainly because nobody knows quite how these drugs work in the first place. However, it is likely similar (at least in concept) to the tolerance that occurs with other drugs, such as opiates and benzos. If you take an opiate or benzo regularly for quite a while, the body gets used to the dose and it becomes less effective. After some time you need to raise the dose to get the same effect, otherwise it stops working, and eventually you may begin to get w/d even while taking your regular dose.

The difference with SSRIs is that they usually work quite well for quite a long time before pooping out. For some people they seem to work okay for years and then suddenly poop out. For others they may gradually become less effective over the years. Some people find that the drugs don't work the same if they go back on after being off for a while (whereas others can use the drugs multiple times with no problems). Some people hit poop-out when they try to reinstate or updose in w/d. It is like the brain suddenly realises it is being 'tricked'. There is a huge amount of individual variation. Some people hit poop out after 5 years, for others it can be 15 years.

You still need to taper slowly in poop out because the brain is used to the presence of the drug, even if it is having no therapeutic benefit any more. Suddenly taking it away causes a huge imbalance just as it would for someone not in poop-out. Your brain has to readjust for the change in the amount of the drug. So in general, smaller changes are still better because it is easier for the brain to adjust.

[GrandmaD]

Great explanations, thanks heaps. I see you 5mos at same dose, so you are a great inspiration to others showing that some of us need to go much slower.