Seeker53 - coped with tapering. 2 months off fell in a heap. Back on!

[Seeker53]

Hi Seeker,

 

I hope you're starting to feel more settled on your new dose.  And definitely no rushing.  After reading so many Intro topics, I know it's just not worth it.

 

I saw your post in the Australia thread about changing the order of posts so they show up from newest to oldest.  I've checked out the site and I don't think it can be done.  However, if you go to the View New Content (top right) after logging in there are options on the left hand side, for example Content I Have Not Read.  I discovered accidentally (just a short whole ago) that if you hover between the Topic Name on the Left and the Replies/Avatar/Last Poster on the Right, an arrow shows up which you can click on.  You then get the option of going to the Last Unread Post, or if you want the very last post, click on the last link just above the condensed version of the last post.  I actually Right Click Open in New Tab so I don't have to keep remember not to close the window when I have finished.

 

Then F5 key to refresh the window.

 

I hope that helps.  I've found that it makes it much easier.  And I only came across because I saw the arrow come up one day and clicked on it out of curiousity, which didn't kill this cat!!!  CC

Thanks CC. I'm feeling quite well. This is day 4 and still no symptoms yet. Had quite a bit on today and managed well. I'm glad about that. But it's still early days so another week or two til I decide if I do the other 5%.

 

Thanks for the directions on how to alter the order of posts. I'll see what I can do because I use an iPad so no mouse! It's a first world problem lol

 

S53

[Seeker53]

I've had a week on the first 5% cut. No symptoms yet and feeling good. No anxiety which I'm please about. I'm having another week at this level and then will cut another 5%. This will make up the first 10% taper. Not sure how long I will hold at this level, but I'm thinking at least 4 weeks. I don't want to get ahead of myself so I am only making up a weeks supply at a time and writing it all down in a notebook. So at the end of each week, I can decide what I'm doing.

 

I'm just wondering about my previous taper. No effects at all tapering - even though it was far to quick. But 8 weeks later disaster struck. Does this mean that my brain coped with decreasing but could not cope with no med? Or does it mean I can taper faster than the recommended speed until I get down to a much smaller dose, then stabilise and slow the taper right down? I don't want to be impatient, more curious really.

[SquirrellyGirl]

Congratulations, Seeker!  It's going well, and that is so great!

 

You are coming down from 150, right?  I'm theorizing that until you get down to 37.5 mg it might go pretty uneventfully, but below 37.5 mg will be treacherous waters.  Did you read the paper about occupancy rates?  No matter how high a dose you go with Effexor, the occupancy (blocking) of the receptors never gets higher than, say, 92%. So as you drop down to 37.5 mg, there's not a whole lot of receptors being freed up.  Occupancy is 80% at 37.5 mg, still a lot!  As you drop below that, receptors start freeing up precipitously!  So, small cuts can lead to large numbers of receptors feeing up which means they'll be sucking up the serotonin and norepinephrine and causing imbalance!  So that's where you're going to start feeling it, I am guessing. 

 

Some folks are so sensitive that they react strongly to the slight changes even at the higher doses.  I suspect long term users such as myself had an arms race going on at the higher doses, with more receptors being added to try to keep up with the drug's actions.  The more drug added the more receptors added, so when coming down, relatively higher numbers of receptors freeing up.

 

At 8 years on Effexor, (12 for me), it may go that way for you, so best to proceed cautiously.  Either way, we're going to have to be especially careful below 37.5!

 

I had weighed out a batch of dosages awhile back, same dose as the last batch because I was focusing on tapering Remeron, but I had WD sypmtoms pop up, anxiety, irritability, sleep disturbances, different than the REmeron symptoms I would get.  I checked the weights on my Effexor doses and there were not what I thought they were!  My scale had lost calibration and the gross weights were off by maybe 5 mg (and I was weighing 80 or 85, can't remember), but that was enough to set me swinging!  So, I've since learned that I have to calibrate every time, and even check that the scale is weighing true with the provided 10g weight in between weighing doses!

 

Anyway, so far so good, and that's what matters!

 

SG

[Fresh]

I think that's the 64 million dollar question Seeker - how best to taper in order to avoid a crash months after stopping?

 

In "Playing The Odds, Revisited"  Stuart Shipko discusses new onset of symptoms 3 to 12 months after stopping the drug , postulating that this may be stress related.  

"   Common themes concerned the abrupt onset of new symptoms 3 to 12 months after stopping the drug, (and) reinstatement of the drug failing to help withdrawal related symptoms" 

See http://www.madinamerica.com/2014/07/shooting-odds-revisited/

 

I recommend erring on the side of caution , simply because the stakes are SO high.  And you don't know for sure that reinstating will be successful next time round.

If I do get a delayed reaction after I finally stop , I don't want to be left wondering "what if" I'd gone slower? held longer?   At least I'll know I gave it my very best.

 

.

[Seeker53]

Thanks to both Fresh and SquirrelyGirl.

My god this is really scary! In the back of my mind I did wonder if I should just taper down to my previous dose of 75mg and just stay there for the rest of my life. Or even make it down to 37.5 and stay there forever. I want to stay alive but if I had to go through what I had last time, and it can last for months or years, I honestly think I would not want to live with it. I had no control and on top of the severe panic, my heart rate over 120 at "rest" and all the other symptoms, my torturous mind was suicidal. I do know now that it was all withdrawal symptoms but I don't think that this knowledge would help me in the grip of such symptoms. It's a risk I don't want to take. I mean quite simply, if I take the risk and lose, I could be dead! Is it worth it? I read Dr Shipko's blog and it really hit me hard. I don't want to play Russian roulette with my life and it seems that 10% tapering does not work when you get to the low doses. He is suggesting no more than 2.5% per month. But does this guarantee that you won't suffer tardive akathisia months down the track?

 

I don't think there are any guarantees. Just risk minimisation. But what are the odds? And are they worth it when the stakes are so high?

 

Just pondering these things............not overly stressed by them, just starting to consider down the track.......and my precious life.

[ChessieCat]

If I do get a delayed reaction after I finally stop , I don't want to be left wondering "what if" I'd gone slower? held longer?   At least I'll know I gave it my very best.

 

I think this is very important.  Need to remember this.

 

I don't think there are any guarantees. Just risk minimisation. But what are the odds? And are they worth it when the stakes are so high?

 

Just pondering these things............not overly stressed by them, just starting to consider down the track.......and my precious life.

 

You, me and hundreds of others.

 

CC

[KarenB]

The complication is that 'staying on the drug for life' ceases to be an option when side-effects outweigh any benefit. 

 

I tend to think that when you boil it all down - the variations and possibilities and pros and cons - that harm reduction is the best plan we can work with. 

 

Slow tapering reduces w/d symptoms, and in many cases seems to prevent them from appearing randomly some time down the track.  It's the uncertainty we struggle with - will we be one of the ones for whom it goes badly?  These are genuine fears, which we all have at some stage.  

 

I think the lack of accountability by the makers and pushers of these drugs adds an extra layer of grief to our already overwhelmed minds.  If somebody gets us into such a mess, then WHY aren't they getting us out of it, or even showing the slightest hint that they care?  Where else in the world can someone cause such harm with no repercussions?

 

You are so right that your life is precious - hold onto it with everything you've got.

 

Karen

 

PS I was on Venlafaxine 150mg too.  8 months later after tapering super-slow I'm currently at 133mg. 

[Seeker53]

The complication is that 'staying on the drug for life' ceases to be an option when side-effects outweigh any benefit. 

 

I tend to think that when you boil it all down - the variations and possibilities and pros and cons - that harm reduction is the best plan we can work with. 

 

Slow tapering reduces w/d symptoms, and in many cases seems to prevent them from appearing randomly some time down the track.  It's the uncertainty we struggle with - will we be one of the ones for whom it goes badly?  These are genuine fears, which we all have at some stage.  

 

I think the lack of accountability by the makers and pushers of these drugs adds an extra layer of grief to our already overwhelmed minds.  If somebody gets us into such a mess, then WHY aren't they getting us out of it, or even showing the slightest hint that they care?  Where else in the world can someone cause such harm with no repercussions?

 

You are so right that your life is precious - hold onto it with everything you've got.

 

Karen

 

PS I was on Venlafaxine 150mg too.  8 months later after tapering super-slow I'm currently at 133mg.

 

Thanks Karen. I agree with the lack of accountability. It's like making the money is far more important than doing no harm. Also apparently, clinical trials don't account for long term use. We are stuck in turmoil while they sit back and count their money, while totally supported by the governments. So wrong.

 

I guess I'm a bit concerned for my safety on this journey. I think I will get down to 75mg and then hold for three or four months. To totally stabilise and do the same at 37.5. If I concentrate on harm reduction, and don't want to take further risks then I may just stay on 37.5mg for ever. Who knows. I'll keep an open mind and review how I feel down the track. I have a long time to think about it because I have only just started tapering.

 

I feel so sorry for the people on here who are going through hell. They must be so strong and focussed to be able to cope with their torment. I want to do anything to avoid going through it again. Such a sad and frightening state of affairs!

 

I wish you well on your journey. I notice that you are micro tapering. Effexor should be banned!

 

Stay well, stay stable, stay happy.

 

Seeker.

[Rachel1963]

Dear Seeker;

I have read your story and I wanted to ask you something. I was like you in that after being off for awhile I got severe symptoms. I have been back on my current dose for over six weeks now and although it is helping a little bit, it's still not great. I wanted to ask you how long before you increased to the higher dose did it take for you to feel so much better? I'm considering going to a higher dose. Thanks for your time, Rachel

[Seeker53]

Hi Rachel,

Thanks for your question. I was in hell too so I sympathise with you. It's an awful predicament to be in. I was put back on my original dose of 75mg Effexor about two weeks after my hell began. It did nothing so the doctor doubled the dose to 150mg. The symptoms started to ease within 2 to 3 days but it took about 2 weeks before I felt like I was actually in control again. I was lucky really because up dosing doesn't work for everyone.

 

Having now read the info here, I realise that I tapered far too quickly. I took 9 months when I should have taken closer to 4 years. This will be why I fell in a heap and went through hell. It seems to be that the last half to quarter of a taper is the most important. Our brains and central nervous system have to be given time to adapt before we stop taking the med. That is why tiny doses are taken for so long towards the end.

 

To be honest Rachel, I can't say if reinstating a higher dose will work for you. I have read your history and even though the pattern is similar, each person is different, each drug is different and you may have damaged your central nervous system/brain which will need time to recover. The best thing to do is to ask the question on your personal thread. One of the moderators will be able to assist. They are very knowledgeable and will be able to suggest the best course of action. All I can really do is sympathise with you. It's an awful thing to be going through - especially in the short term!

 

I do have some questions for you. Do you take fish oil and vitamin e and magnesium? There is a thread on supplements and many people have found that they help. Do you keep a journal or check list daily to assist you? Sometimes there are improvements but they can be slight and we forget to notice them when we are going through hell. Have you read the windows and waves thread? It will explain the wd symptoms.

 

I wish I had answers for you. All I can tell you is the facts that occurred for me, at that time. I honestly think that I did damage my CNS and brain by tapering too quickly now that I have more knowledge on the subject. I am stable now but I wouldn't say that I am back to how I was 100% before I even started my previous attempt. I'm about 85 to 90%.

 

Im sure a mod will be able to help you decide what the best course of action is for you. Do let me know how you are going. I think it does help to share and we are basically all in the same boat - just in different cabins!

 

Best wishes. I hope your current situation gets better quickly and you feel more in control

 

Seeker

[Rachel1963]

Thank you so much Seeker. Yes Karen has told me to stay right where I am which is what I intend to do. I guess when we're suffering we want to find the fastest way out of a situation and I am prone to panic. My taper was way too fast also, it just seems to be taking a long time to stabilise but you're right, I have hurt my cns and will just have to wait it out. There are some things not as bad like the depression has greatly reduced, I honestly didn't think I was going to make it sometimes. Thanks for answering my question, I was just curious.

With respect to your taper slow slow slow seems to be the way. When I stabilise that is what I intend to do. Take good care and I will let you know how I'm doing for sure.

[Rachel1963]

I take magnesium.

[Seeker53]

Rachel,

I did smile when you said that we look for the fastest way out and like you, I am prone to panic. I guess there is no quick fix and we know that we have to go slow, be stable and also be nice to ourselves. I think I have always been on the too sensitive side which is probably how I ended up thinking I needed to take an ad in the first place. I don't get the low black depression on the ad but I also don't get the good highest happy feelings either. I'm also starting to get stomach problems again on this higher dose, so I may have to taper a bit quicker to get down to 75mg so those symptoms subside and I will stabilise from there. I don't want to have to take more drugs to cope with the symptoms that the ad is causing! It's all balances, checks and trade-offs!

 

I didn't realise that you had to wean off menopause drugs too! My doctor tried to prescribe them to me a few years ago but I didn't feel comfortable taking them so I politely refused. I don't know if you have spare cash, but I found yoga to be excellent for menopause symptoms. You can search YouTube if you want to do it at home. It really did help. There are also yoga sessions that really help with depression and anxiety. I don't practise them very often but when I do, I notice results.

 

I'm glad Karen was able to help you. She's helped me too. It's a learning curve and a day to day thing, ups downs, light and dark. Be extra kind to yourself. Acknowledge how far you have come and how much you have learned about your situation. Don't give in to the fear, just accept that it too shall pass and is just another symptom of the process.

 

Hugs and peace,

Seeker

[Fresh]

Stomach problems? There are loads of ways to address that besides a quick taper. Dietary modifications have less risk than dropping doses as a first response.

 

Check out Symptoms and Self Care for ideas.

[KarenB]

Too true Fresh. 

 

Seeker, you can also read about healing your vagus nerve (which links our guts, brain and heart).  Learning about that has been an important part of my healing from SSRIs.

[Seeker53]

Stomach problems? There are loads of ways to address that besides a quick taper. Dietary modifications have less risk than dropping doses as a first response.Check out Symptoms and Self Care for ideas.

Thanks Fresh. I've started reading about self care for stomachs. I do watch what I'm eating. I'm just a bit paranoid about these problems because my grandfather died from stomach cancer and my father had cancer just above the stomach which was removed, but he then got cancer of the liver and died. Sad. Anyway, I will try to ride it out doing what I can and try to keep to the slow taper. I know the symptoms will cease when the dose of ad is lower. But I will be sensible and make sure I follow the self care ideas. If they don't help, I will review the situation. I refuse to go back on drugs to control the problem.

 

Thanks,

Seeker

[Seeker53]

Too true Fresh. 

 

Seeker, you can also read about healing your vagus nerve (which links our guts, brain and heart).  Learning about that has been an important part of my healing from SSRIs.

Thanks KarenB,

Just when I thought I had a bit of a grip on the information here! I'd never heard of the vagus nerve - so I have a massive learning curve ahead of me. I now understand the basics but more comprehending to be done and putting it into practise.

 

Symptom-wise, I'm doing ok. A bit of disruption to my normal sleep pattern but we have sold our house and are starting to pack after 20 years! We are putting our furniture into storage and taking the caravan and heading out to the bush for a while. So my sleep patterns may be affected by all of this too! I'm not particularly stressed about the upheaval but I have noticed I'm a bit more wired. Not sure if this is due to my first drop of 5% (will be 2 weeks at this level on Wednesday, with the further 5% this Thursday). But I'm coping fine and I don't feel unstable particularly. Just to be sure, I will hold for a month starting Thursday to make sure that I'm doing well. Settlement for the house is on 17th feb, so it wouldn't hurt to hold for even longer and allow that to pass before dropping the dose again. That way, I won't be taking a risk while maybe being under pressure. Hope this makes sense.

 

Anyway, back to digesting more about this vagus nerve.............

 

Seeker

[Rachel1963]

Hi Seeker; it took me awhile to find your posts again, I'm not so great at maneouvering around. Thanks for your kind words and I wish you all the success in the world. I was already down a third of my estrogen weaning until all heck broke loose with the ad withdrawal. So when this settles I will continue tapering the estrogen just like any other drug. Hugs, Rachel

[Seeker53]

Rachel,

Sounds like a good plan. Getting stable is not the easiest but there is so much info on here to help. Good on you for having a plan. You will get there. We all will. It just takes time, commitment and putting new knowledge into practise. Put like that, it sounds so simple and easy. It's a case of riding it out. Sometimes that's a week, a day, a minute! I have learned that a healthy lifestyle involves more than eating and physical exercise. The biggest thing we can do is to nurture our mental/emotional side. Attaining a good balance between observing our thoughts or reacting to them. Again, simple words, but this can have a huge impact upon our chemical balances too.

 

I hope you get through to stability soon, with not too much angst.

Hugs,

Seeker

[Seeker53]

A poem I wrote.

 

TANGLED MATRIX

 

Greed, corruption, corporations. Power.

What? You can't cope?

Take this pill. Feed the matrix.

Help the system grow.

 

Numb to life. Side effects.

What? You don't want the pills?

That's not the way.

You must play your part.

 

Follow the advice of the system.

What? You have new symptoms?

Take this pill. Add that pill.

Help the system grow.

 

Still you are unwell. Frightened.

What? You need more help?

Take the original pill too.

You must play your part.

 

Status returned. The system works.

What? You want to slow taper?

There is no need. Follow advice.

Help the system grow.

 

Inner strength is growing.

What? You are coping?

This defies system logic.

You must play your part.

 

Emotions are returning.

What? You are starting to feel alive?

You are in control. You see the light.

Help your system grow.

 

 

Seeker

[Seeker53]

Today I was going to taper the other 5% but I have decided to wait for another week. The last couple of days I have been feeling a bit off at times. Tummy a bit quiffy and the occasional feeling of panic - which seems relatively easy to control. I have decided that I don't wait to risk reducing my dose, in case these feelings are related to the first 5% taper.

I also have been wondering what else I have changed in the last two weeks and I realised that I changed brands of vitamin e and the dose is also higher. I know I'm sensitive to digesting too much oil so I'm thinking that this may be a contributing factor. And when I feel the tummy symptoms, this causes a feeling of anxiety. So I'm going to get to the shop today and revert back to the previous brand of vitamin e. Changing nothing else, this may bring relief. So I've managed a 5% taper so far. It's a start. But I must feel stable and well before I taper again so holding is the only option.

So, in a weeks time I will asses again.

If it is wd symptoms, then obviously my CNS was very damaged from the last, fast taper. I guess that I will know more about that when I taper again and the symptoms return (changing nothing else at all). Highly likely that it will be wd symptoms tho! But still no brain zaps. And I got a great sleep last night which is a huge plus

 

Seeker

[SquirrellyGirl]

Hi Seeker, very wise of you to listen to your body and hold off on the taper.  I am in the same boat.  I was going to drop another 5% starting tonight, mirtazapine, but I'm sick with probably the flu and now is not the time to change things!

 

SG

[Seeker53]

Hi Seeker, very wise of you to listen to your body and hold off on the taper.  I am in the same boat.  I was going to drop another 5% starting tonight, mirtazapine, but I'm sick with probably the flu and now is not the time to change things!

 

SG

s

 

That's no good SG - it's not nice being sick. And you are right too. If you don't feel right, don't taper. I just don't want to take a risk. I think I was very lucky last time that reinstating worked and I won't push my luck this time. There is too much at stake. So it's a bit disappointing not to taper - but in the grand scheme of things, what is a week or two? Or a month or two?

 

Take care of yourself and I hope you feel better soon.

 

Seeker

[Seeker53]

I dropped the further 5% last Thursday and am now taking out 54 beads from each capsule. I'm happy that I'm going well. Just the odd "funny" head. Not as strong as brain zaps and they are quickly gone. No dizziness yet either. I will hold this dose for a month and then review. Hopefully will feel up to coping with a 10% drop.

I noticed after the first taper that the first week was great, the second week a tiny bit off. It will be interesting to see if I'm a bit off next week or not. I'm writing every dose change down with the review dates so I don't get muddled up. We need an app for this.

Life is hectic with the house selling, hot humid weather, and packing boxes. But I'm taking care and listening to my body and I'm able to stay positive. Going well. Long may it continue.

[KarenB]

Sounds good Seeker - hectic but good .  I write everything down too. 

[Seeker53]

I did my next 10% taper two days ago. No symptoms so far but I think it may take about two weeks for me to feel any reactions. Hopefully any reaction will be controllable. This is the first full 10% reduction so if I don't cope, then I'll just have to be ok with only doing 5% and taking twice as long to taper.

Still taking vit e and fish oil daily. Magnesium as required. Bought the vit b complex but haven't been game to take them in case they increase anxiety!!!! Lol. I will try them before my next taper in a month or so. It's funny how you get quite stable and don't want to do anything that may upset the balance.

Also, house sold, everything packed up and in storage. We are staying in the caravan at our sons place to spend some quality time with the grandkids. But we all have a terrible cold. We usually avoid sick people. This is the first cold I have had for years. Feeling like my head is going to explode! Have just taken tablets so should feel better soon. Taking it easy til this passes.

[ChessieCat]

Hi Seeker

 

The B Complex might not be a good idea.  If you react you won't know which one in particular it is.  I think B6 is the activating one.

 

Yes, I can understand that feeling of not wanting to rock the boat.  After my first 10% decrease and consequent increase by 1/3 I got wary of dropping by 10% have been doing a 2/3 of 10% drop (roughly 1/3 of 10% every 2 weeks).  Unless you have a reason to stick to a period made up of weeks (I did for a while because of work), you could always try dropping less but more often than the month, for instance 3 weeks, so it won't take twice as long.  We don't want to be on the stuff any longer than absolutely necessary.

 

Sounds like you've managed okay with the house and packing.  I hope you enjoy your time with the family.  You may have succumbed to the cold because of the added stress of the move.

 

Take care.  CC

[JanCarol]

Hey Seeker!  I love love love your poem!  

 

Here is the upside of the slow taper - not only do you reduce symptoms, but as your drug load gets lighter, you will begin to feel yourself awakening again.  For me, it was like walking out of a deep tar pit - at some point I could see light again, then I could breathe, then I could move a little bit - small improvements until I realized I was mostly free again.  

 

So really, the long taper is only tedious for the first part of it.  When the lights start coming on again, you will feel great relief.

 

Even though the last tiny bit of taper requires more caution - it is also a time when you generally feel better than you ever have since starting the drugs, and you know you would never go back to the full dose again!

 

I hope you see the sun today.

[Seeker53]

Thanks jancarol. Funnily enough, the light has come on a few times over the last month. Some memories and beginning to feel more. It's nice and very welcome.

I added a mild vitamin b complex and have a bit more energy which is a plus.

I didn't drop the full 10% this time. Three weeks into the last 10% I got a few withdrawal symptoms. So I'll do 5% and wait two weeks then do another 5 and hold for 4 weeks.

Doing well tho, and feeling good.

Seeker

[KarenB]

Another uplifting post .  Glad you are doing well Seeker.  Good decision to drop more gently.  Your body knows best!