arwen Fighting with anxiety

[arwen]

Hi everybody,

 

I have been reading this site for a while, but I didn't have the push to write my story. I was hoping to be free of Paxil forever and I was planning to write my success story after half a year, or one year. But this plan changed 2 weeks ago, when I had a breakdown

 

I started on Paxil, 2 and a half years ago, after another breakdown, worse than now, I was not functional, couldn't exit the house alone, dizzy, miserable. Paxil helped me (with a delay, a psychiatrist bumped it up to 20mg, and this hurt not helped). I recovered. I started slowly decreasing to 17.5, 15, 12.5, 10, 7.5, 5, 3.7, 2.5, at least one month at each step. It was not easy, I had different symptoms, brain zaps, tremors (even if nobody could see me trembling), dizziness, but it was manageable. I have been working full time all this time.

 

I became free of Paxil 3 months ago, just before holidays, when I had some time off. Again, I had symptoms in the first weeks, but it was bearable. 

 

And then, slowly I started feeling worse and worse, under control until 2 weeks ago, but after some stress at work (nothing out of extraordinary, nothing I didn't go through before) I had this new crash. The problem is a very high anxiety level, I wake up trembling inside, and feel my stomach in a knot all the time I am awake. I am continuously in high alert, I cannot relax. I can hear my heart beating all the time, I am scared without reason. After a couple of days like that I became very tired. I sleep relatively well, this is the only moment when I relax (but even then, I wake up after 6 hours, difficult to sleep back).

 

Yesterday I took 1 mg of Paxil in the afternoon (I still have a lot of pills from last year), and after only one hour the high anxiety went away. Instead I got dizzy, lightheaded, the veil on my brain is back  This morning I took 2mg and I plan to continue like that, better slightly dizzy than trembling. 

 

I know that 2 mg is a very low quantity, just one tenth of the "therapeutic" dose, but for me it feels like a lot. This looked like the only solution right now.

 

I tried different supplements before, nothing helped, not even Magnesium or Omega 3 - they didn't hurt either ( the B vitamins did hurt, but I had not taken them for a long time). I am not drinking coffee, not eating chocolate, I avoid sugars, I try to eat balanced and healthy.

 

[mammaP]

Hi Arwen, I'm sorry you have had withdrawal after tapering so carefully. Sadly it was still too fast

and caught up with you. Many of us have done the same thing, myself included, and had to reinstate.

If 1mg eased things a little it may be best to stick with that for a few weeks and see how it goes. If you

settle on 1mg it will be less to taper later. If you find it isn't helping then you could go up to 2mg. 

Our Nervous system changes with withdrawal and what might have worked before can be too much

later.  

I quit effexor at 5 beads but when I reinstated a month later 5 beads was too much and I eventually

settled with 4. It took several months to stabilise enough to restart a taper.  

 

Thank you for putting your history in your signature, it is very helpful for us. 

 

Welcome to SA, the best group on the net! 

[arwen]

Thank you mammaP for your answer. I know this is the best group on the net, I have been reading it for some time. There are some amazing people writing here.

 

I started already with 2mg and I will stick to it for now, until I stabilize. Too many changes are not good either, and 1mg I feel like it is too low - I was on 2.5 for the longest time, and I felt good. It is much too early to see if it helps, I just replaced the extremely high anxiety - impossible to deal with, with some dizziness - more manageable, as long as I am safe home. I hope it goes away soon, after I get reused with the quarter of pill.

 

I took some days off work, but on Monday I need to go back, I suppose this refuels my worry.

 

I don't care right now very much about a future tapper, because I am not sure I will ever be able to do it. But I never say never I just want to be functional again, on a small quantity, without secondary effects. On 10mg I was putting on a lot of weight, on 2.5 mg I was able to (almost) get rid of it. On 20mg I was numb, on 2.5 mg I was almost normal (except the thin veil on my brain).

[Zoe]

Hi Arwen-

Welcome to the site. You'll find some great answers & support here. Hang in there!

[bubble]

welcome Arwen,

 

I just wanted to add that you are reasoning very well and it shows you've done a lot of reading here. If I were you. I'd do the same.

 

Don't worry about Monday. Things won't improve immediately but will definitely get better bit by bit and ore bearable. MammaP explained it very well what probably went wrong and I see that you understand it yourself: it was quite slow but obviously still too fast.

 

Since you felt better immediately after reinstating, I'm really hopeful it will work for you.

 

hang in there!

 

best,

bubble

[arwen]

Thanks zoe, bubble. It was too fast at the very end. I think I was fine down to 2 mg in October, but then I rushed, the holidays were coming (good opportunity, time off), and I wanted to be over with. I should have known better. But we learn from our mistakes, so next time I will be smarter.

 

I hope other people will learn from it too. Don't rush the withdrawal, even if you take a tiny quantity! 

[arwen]

I just want to write an update. I feel much better now, after one week of 1 mg of Paxil (2 mg one of the days). It took one week to have an effect and it finally did. I was able to go to work, unpleasant, but every day was better and better. 

 

Thank you so much mammaP, your idea to take 1 mg instead of 2 mg was excellent (and I almost didn't do it).

 

I suppose I will stabilize on 1 mg for at least a few months before starting again to decrease. And this time I will go slower. Last time I was slow only down to 1 mg. Then I just stopped, and that was a mistake. But I didn't know that you can withdraw from 1/10 of the smallest pill! 1/20 of the "therapeutic" dose! Now I know!

[NewMe]

Arwen have you tried vitmin d3? Just curious

[Meimeiquest]

So glad you're here! You might want to read Hudgens thread...he too ran into trouble at the end, but regrouped and has been an inspiration to us all...like MammaP. Good luck as you continue to heal!

[arwen]

I tried a combination of B vitamins (not now, last time when my anxiety peaked, 2 years and a half ago), and it made me even more nervous and dizzy, so I gave up. Even the B-s from a multivitamin are too much for me. I prefer to avoid any excitants. I am sensitive to caffeine and sugar, even if sometimes I cannot resist to a piece of chocolate (not recently, only when I feel really good).

[Altostrata]

Welcome, arwen.

 

Yes, many of us are sensitive to even tiny amounts of B vitamins.

 

Please see http://survivingantidepressants.org/index.php?/topic/3079-about-reinstating-and-stabilizing-to-stop-withdrawal-symptoms/

 

and http://survivingantidepressants.org/index.php?/topic/405-tips-for-tapering-off-paxil-paroxetine/

[Nikki]

Arwen I can't do the vitamins either.  Paxil is rough.  Been  there.

 

If you are a member of Facebook there is a group there which is solely devoted to helping people who are trying to get off Paxil.  It is based in the UK.  The people there are lovely and are in your situation.

 

Because this is not a FB site it is alot more helpful, easier to read and alot more information, much more information and you can connect with people as well.

 

LIke meimquest said.....good luck as you continue to heal...the other site is 'getting off paxil safely'

 

Hugs

[arwen]

I am not a big fan of Facebook, but in case I make an account, I will check the group.

 

Today I feet also good, like yesterday. Reinstalling the tiny quality of 1mg worked. I am already thinking about tapering, but I should take it easy, it is way too soon.

 

When I say I feel good, I don't mean I feel at my best, I am still dizzy, anxious, worried. But I am functional, going to work, I enjoy doing things , I am so much better than one week ago

[Petunia]

Hi arwen,

 

I'm happy to hear that the reinstatement is starting to work.  If I were you I would give it at least a month before you start thinking of tapering.

 

Petu.

[mammaP]

That is good news Arwen, I am so glad you are feeling better but have to agree with Petu,

don't make any more cuts for a few weeks so that you can stabilise. It is so easy to think 

it's safe to cut when feeling better but believe me it is not always safe! Cutting too soon can 

lead to withdrawal and a set back that can take months to settle again.  

 

Enjoy the new found wellness for a while and let your brain adjust 

[arwen]

I will not cut now, It would probably take me back to the horrors from last week, and I definitely don't want that. I will wait more than one month, and then I will take it as slow as my digital scale allows... And only if I feel I am ready!

 

In between I have a lot of things to work on. Like relaxing more, not taking all my worries too seriously. I cannot stop the worries, but I can recognize what they are, just thoughts without substance.

[arwen]

Another week, another update... I feel reasonably well on 1 mg, this is a tiny quantity for Paxil, but I had to reinstall, I was in hell. Now I am functional, I go to work, I do the daily chores in the house. I even went for a short walk today The spring still keeps us waiting... There was a pretty bad winter here in Canada, this also contributed to my misery.

 

I started some meditation (there are some free apps for the phones), but it is too early to know if it helps. The damage that the pills did to the brain can be cured with time and the meditation can give me this time. 

[Nikki]

Arwen....

 

Glad you feel better - nothing wrong at all with reinstating.  If you need to go up again do so.  At least like you said you are out of he horrors of last week.  Stay put and give yourself a long break.  No rush...sometimes these breaks will go on for months and if they do so what....you feel better.

 

No matter who I talk to, when not working for sick time, vacation ,etc....we always dread going back....it's normal these days

[Meimeiquest]

You can look at reinstating as a way of taking care of yourself. It's what you needed, and you did it. A tiny bit like that is just to treat withdrawal, don't think you have relapsed.

[arwen]

Nikki, you are so right about going back to work... And I had a break of only 3 days! But my anxious mind was predicting bad outcomes: "I will feel so sick, that I will have to go home immediately"...

 

Of course it was not like that at all! I was actually happy to talk to people, to go back to my computer and do something useful. I was/am still slightly lightheaded (from Paxil maybe, I didn't have it before), but this is so much better than being home the whole day, brooding over my problems, making the problem 10 folds bigger.

 

Meimeiquest: yeah, I don't feel like I relapsed. I tapered very carefully down to 1 mg, and I was fine. The final step to zero was problematic. I read everywhere about the 10% drop, but there is not much info about the end of taper. There is a moment when you cannot really do 10%. And I made the mistake to think that 1 mg is the last step. 

 

But how to taper from 1 mg is a problem for another day, now I don't have any other responsibility then to take care of myself and recover.

[Nikki]

arwen I have a friend in the UK who got off paxil three years ago.  When she was in the lower doses as you are she had to stop with the 10% reduction schedule and make very minor drops....very small

 

You an drop 1 droplet out of a syringe and in the lower doses that may be as much as you can take.  She used Rescue Remedy for the anxiety and always kept it in her pocketbook.  After she finished she still took RR and was fine. 

 

Brooding at home.....yep that's me thinking obsessively and worrying.  Best to be out and about.

[arwen]

I don't usually have sleeping problems (I am lucky, I know ), but last night I barely slept 4 hours. My heart was pounding, my pulse was faster, each time I was almost asleep my internal alarm system was triggered. Exactly like some weeks ago, when I crashed and I had to reinstate.

 

I know that this night I will sleep well, and it was good to happen in weekend, I feel good now (I even went for a nice walk today), but I am trying to find the cause. Is it possible that the Paxil pill is not uniformly distributed? And some days, I thing I take 1 mg (carefully calculated and measured on the scale), but I actually take less? 

[Altostrata]

It may take a while for your nervous system to stabilize. You'll be going through waves and windows. See the Symptoms and Self-care forum for suggestions on dealing with symptoms.

[arwen]

A new update about my (tiny) Paxil reinstating:

I was feeling stable and better at 1 mg, out of the dark hole, but not good enough for the long term, so one week ago I decided to increase it slightly to 1.4 mg. I looked at my calendar from last year, and I noticed that from 1.4 down I started to hurry, not stabilizing enough, considering the amount too small to matter anymore. But it matters

 

After starting 1.4 mg, a couple of days ago, I had a window when I felt really good. The rest of the time I feel acceptable. I slept like a baby every night of the last week

[cymbaltawithdrawal5600]

Wow, that is great news. You'll probably do better this time with a much slower taper. I sleep like a baby who wakes up too often but it's not from hunger, just withdrawal. I'm glad you get good sleep.

[Altostrata]

Good to hear, arwen.

[arwen]

Thanks Cymbalta and Alto for your nice words.

 

My day got even better I went for a one hour walk today, and, for the first time this year, I are the lunch in the backyard! The trees are still grey, but the weather is improving, and it was so good to breathe the fresh air, to see the lake and the birds. The robins are back

[arwen]

Just a short update: I continue with 1mg/day (1.4 mg was too much, it was making my brain even more foggy). I am functional, I go to work, I take walks almost every day. The anxiety and cortisol surges decreased. I still wake up trembling, but it goes away after a few minutes. The foggy head (and slight dizziness) is the only concern right now, but they are manageable. I traded the clear head (that I had before I reinstated the tiny dose) with the insufferable anxiety (or vice versa). 

[Rhiannon]

Hang in there arwen, the waves and windows will come and go but if you stick with it and don't change anything you will stabilize eventually.

 

I notice you mentioning several times that 1 mg seems like a small quantity. You might be interested in the charts from this thread:

http://survivingantidepressants.org/index.php?/topic/6036-why-taper-paper-demonstrates-importance-of-gradual-change-in-plasma-concentration/

 

If you look at the one for paroxetine, you can see that at 20 mg you have 80% receptor occupancy, but at 2 mg you still have about 20% receptor occupancy. That's a 90% drop in dose but only a 75% drop in receptor occupancy. And that just gets even more extreme below 2 mg. It looks like it's about 15% occupancy at 1 mg so that's a decrease of 95% in dosage but only 81% in receptor occupancy.

 

And from 1 mg down to zero you have to drop that last 19%. So it's not that small!

 

It's not a straight line, it's an exponential curve, which is why what works is tapering based not on your starting dose but on your current dose.

 

Your taper was linear, which works at the higher doses, but as you can see from the charts, at lower doses the receptor occupancy changes drastically with only a very small change in dosage, so a linear taper is pretty drastic at those doses.

 

So basically you're in withdrawal now. You can expect symptoms to come and go for a while. You will stabilize eventually, and then you can taper off using the 10% taper, with very small drops, 10% of your current dose at each step until you get to a really miniscule amount. At 1 mg your first cut should be no more than 0.1 mg.

[Altostrata]

Great explanation, Rhi. Could you add it to http://survivingantidepressants.org/index.php?/topic/6036-why-taper-paper-demonstrates-importance-of-gradual-change-in-plasma-concentration/

[arwen]

Thank you Rhi. This explains so much. This is why I didn't have any problem (except some annoying but harmless symptoms) until at the very end. I think also that there is a very big variation between different people. The exponential (logarithmic) pattern is the same, but maybe for some people it starts dropping at higher dose and for others, like me, at lower doses. So most of people can stop after 1mg, but not me and other like me.

 

This is what I will do. I will keep it at 1mg for the time being.

[WinningThrough]

Hi all. I've just tried looking at these charts with my drug mashed pea brain!! Prior to drugs I had a sharp, intelligent mind and would have been able to grasp this. Now..no chance! It just ain't happening!

 

So, just wondering..the lowest 'therapeutic' dose of sertraline is 50mg. I've reinstated at 1mg and I can't for the life of me work out what occupancy that is! Any ideas?

 

Thank you.

[WinningThrough]

Er, sorry Arwen! I'm not sure how my last post ended up here! I was looking at those tapering/occupancy charts and somehow managed to post about them in your thread. I think it's because there is a link to the charts here. Doh!

[arwen]

More updates:

 

I was 3 weeks on 0.9 mg, the transition from 1 mg was very smooth. Just some extra trembling, a few brain zaps, but no anger, no crying, no extra dizziness or extreme anxiety. The morning trembling remained the same. 

 

1 week ago, I went to 0.8 and it look like it was a mistake. At the beginning I felt great, the Paxil "dizziness" that accompanied me most of the last 2 years and a half (except the 2 month when I didn't take it), was almost gone. But today, I had, not one, but two breakdowns. I cried for 1 hour at work when something minor triggered my reaction (I am lucky to have understanding boss and colleagues), and later, in the bus, I cried the whole hour coming home. The reaction was way out of proportions, so I can blame only Paxil. From tomorrow I will go back to 0.9. 

 

But I don't really know what to do long term. If there were 1mg pills (or 2 mg that can be cut in 2), I will be very happy to take it indefinitely, with the hope that the dizziness will go away in time. But like that, it is difficult to cut and measure very exact. I spend half an hour every weekend to prepare my pills for the week. I can do it for a few months, but I don't want to do it for ever.

[Petunia]

Hi Arwen,

I'm sorry you had a bad day, its great you have a supportive work environment.

 

But I don't really know what to do long term. If there were 1mg pills (or 2 mg that can be cut in 2), I will be very happy to take it indefinitely, with the hope that the dizziness will go away in time. But like that, it is difficult to cut and measure very exact. I spend half an hour every weekend to prepare my pills for the week. I can do it for a few months, but I don't want to do it for ever.

 

Perhaps you could think of it like this:

 

I'm happy to spend just half an hour each weekend to prepare my medication so that for the rest of the week I can have some functionality in my life and some control over how I experience most of my moments, as I continue to taper.

 

I think going back to 0.9 was probably a good idea. Give it a few more weeks.  As dose gets lower, it seems for some people, our nervous system becomes more sensitive to changes, as explained in those charts Rhi posted.

 

Petu.

[Altostrata]

Can you get a prescription for Paxil liquid? It will make it easier to taper.