peggy: 13 years of Effexor

[tezza]

Peggy,

 

I'm so sorry you're going through this! I agree with Alto, you could probably have been okay with less and it's not too late if you decide to try less tomorrow. Whatever you decide is best, we are here for you.

 

Hugs,

Tezza

[strawberry17]

Agree with everything Caro said, hope it all settles for you soon.

[peggy]

Thanks all xxxx

I am so surprised that it has hit me so hard this time- the last two mini crashes were relatively benign compared to this one.

 

I have been listening to Gia's wonderful relaxation tracks and working hard to try and keep my thoughts from running completely away from me. I have lost 4kg (9lb) over the last week- I guess when I feel better I will be doing a happy dance about that!

 

I have had a pretty quiet week, trying to keep occupied but with no pressure. Have made myself clean some cupboards and drawers and done some sewing. Watched some DVD's today.

 

Still licking my wounds

Xxx

[strawberry17]

Peggy I've lost 4lb as well, it's the only good thing about it isn't it?

[peggy]

yeah, but feeling like this i would rather be fat!

 

the rapid weight loss always causes me to have a bird cage mouth

[peggy]

have a little query,

 

my last three forays into tapering, the first a bit too quick as i got lower, the second smaller but more frequent tapers and then the third a good honest, slow 10% every 3-4 weeks -(with no recognisable symptoms except perhaps a little fractured - but not shattered sleep) have hit me at the six month mark. Is it possible that i have a long delay and even the small reductions i make catch up in six months.

 

do i have to make 2 reductions and then wait six months before the next? I will be reducing about 14 years if that's the case...but i guess that is better than being forever on them.

[caro123]

Hi Peggy,

 

I am so not the expert, but I have tried to reduce before u n s u c c e s s f u l l y.

 

The reason why I have held for so long is becuse I believe that there is a lag time and 10% tho good I still think that a puase may be needed. I have no idea how this works I am sure others would be able to explain it better. I think it gets trickier when you get lower.

 

Thinking of you.

[Altostrata]

Updosing a bit, holding, and then reducing carefully can get you over those rough spots.

[peggy]

i think i will be doing 6 monthly holds

[peggy]

so, here i am 2 weeks after updosing starting to feel a little more solid. I have done some serious soul searching over the last couple of weeks and have decided to sit where i am for the time being. I have pushed the envelope many times with effexor, going up and down and on and off. I have always felt well on Effexor for the last 13 or 14 years - my desire to come off is based on the possible long term problems with being on - but looking to the long term i am ignoring the present. I cannot deny that i had 6 separate episodes of depression before taking an antidepressant, so my chances of relapsing once off are probably quite high and i don't want to go back to that place - and i was doing CBT with a very good therapist at the time.

 

I do think AD's are overprescribed, they should be reserved as a last resort and for severe episodes only but we should not be too quick to throw the baby out with the bath water and not suggest that every one can or should get off - depression can be episodic - apparently my grandmother suffered similar episodes - how did she get through i used to think, she had no meds - well, apparently she would go to her room for months and months every two or three years and the family would just get by without her until she came out again.

 

Anyway, that is how i am thinking at the moment - that could change at any time

[basildev]

I'm glad you're feeling better Peggy.

 

Only you can make the right choice for you and your body.

 

Sometimes we just don't have the option of being able to disappear for months at a time like your Grandmother. The buck stops with us, so we have to do whatever it takes to keep on living.

 

So you just do what's right for you and your family.

 

Listen to your heart.

 

xx

[laineyk]

Peggy, I am right there with you! I am so trying not to increase at least I am giving it another week and if I dont feel significantly better, I too am going to "cave in" because although I am better then I was 7 weeks ago I am still having anxiety and not feeling well

 

I have lost an entire year to this and its so scarey. my husband thinks that once my gut is healed then my mind will follow. Found out I am gluten /cassien intolerant so have been off both for a week

 

my stomach has gotten so much better in the last couple days, not in constant pain and burping, bloating...but my mind still feels like its in a washing machine. feel very lethargic, spacey and of course throw in the anxiety off & on

 

I too have lost a total of 25 lbs and as you said, rather be fat and happy then skinny and sad/anxious

 

So we will keep going through this together!!!!!

[peggy]

Long time no see!  I haven't been here for almost 2 years and was feeling a little lost yesterday and thought i would log in (have had 14 house guests over Christmas/ New Year and am just a little shell shocked)

 

I have been very well over the last 22 months since i was here. It has been very good to just take my Effexor every day and not think about counting beads or worrying about withdrawal.  That said, I still wish i wasn't on anything but at the moment it is what it is.  My mother died last year and I can't imagine going through all that in the fragile world of withdrawal.  

 

I also became a grandma   and fell completely in love with him.  It is so much different than having your own babies - we babysit him a lot when his mum works and I spend the day looking at him - when you have your own children you worry about getting the washing done, i don't think i spent enough time  delighting in my children.

 

I also had a medical issue that resulted in me being taken off my beloved oestrogen - back to hot flashes 24/7.  I was enduring them OK until the summer hit.  I was in picking up my prescription one day and asked the pharmacist if there was a type of oestrogen i could take that didn't increase  clotting risk - and she directed me to the website ACNEM - Australasian College of Nutritional and Environmental Medicine.  I looked through the find a prescriber and chose one that dealt with hormones and made an appointment.  Had to wait 3 months to get in.

 

After a long interview and testing he said he won't give me oestrogen but my testosterone was in my boots, so gave me some cream for that and a herbal hot flash tablet.  He also said i have pyrrole disorder and am an undermethylator and did i want to try supplements for those in the hope of getting off effexor?  He wasn't pushing that at all, he said that even though you are very well on Effexor, we don't know the long term consequences of being on it for decades.  I told him that i wasn't sure, but i would start supplements and then decide if i want to reduce in a few months.  

 

Fast forward 2 months.  I am feeling very, very well.  Sleeping through the night and awakening refreshed and ready to jump out of bed and start my day.  One of the complaints i have of effexor is that when i waken i feel heavy and slow. Takes me about an hour to feel like doing anything - not anymore, so i am ready to dip my toes in the tapering department again - not sure how far i will go... I see this doctor again next week.

 

My pdoc is sceptical about it - she says pyrrole is the flavour of the month. 

[mammaP]

Hi Peggy, welcome back  .  You've made a lot of attempts to get off effexor, you sound just like me! I tried several times too and the last time crashed after tapering too fast (again), even though I thought I had gone really slow after tapering for nearly a year  . I reinstated then started to taper again and now take just 2 beads!  I'm sure that when you decide you are ready again you will be able to succeed  . 

 

Congratulations on becoming a grandma, it's brilliant having grandkids to spoil. 

[peggy]

hi mamma...how many beads are in your capsules?

[mammaP]

My capsules are 75mg and have on average 400 of the little blighters! Counting them is a pain, but I have to admit that I didn't count them properly until the final 30 or 40 maybe. I guessed and actually got quite good at it.......or so I thought!  Crashed big time and reinstated then took ages to stabilise.  A scale is better than counting, because the beads are not all the same size and that makes a huge difference at lower doses. 

[JanCarol]

Hi Peggy!  I just finished reading your story - and I think your final conclusion of needing long, long holds - going THROUGH the anxiety (sux, I know) is the best way you will be able to reduce, much less eliminate the effexor.  Your "slow taper" was still under a year, and these things can take 2-3 years before you are finally free.

 

But - wouldn't "free-er" be good enough?  You had to go back up - you had to function.  I don't work, and if I melt down and crawl into a cave like your Grandma, my friends would miss me, but life would go on.  The prospect of being alone in my head like your Grandma is terrifying, but if I needed to melt down, as long as hubby and I can get by.  And nobody gets hurt (i.e., violence or harm of any sort).

 

So even if you could reduce, you will be healthier.  Don't let that orthomolecular guy sell you on complete withdrawal.  If you need to function, you do.  You're already "below therapeutic levels" now!  MAYBE your orthomolecular practitioner can get you all buffed up and make the withdrawal easy.  Maybe so!  

 

I guess I'm saying:  scary, please be careful!  I, too have genetic madness - but I am also suffering under the lithium yoke.  I may never get off lithium, but I intend to get it as low as possible!

 

Guess we both have "flavor of the day."  Would you like chocolate with yours?  

[JanCarol]

Oh yeah:  my compounding chemist can make my thyroid capsules slow release.  He may not be able to make it as slow as effexor XR, but maybe - to make your life easer (I think bead counting and droppers are a special form of heck!) he could make your taper doses a month at a time and make them slow release - maybe 2x a day to keep it even - and make your tapers easier.  

 

It's something to consider.  It will be hard to get your psychiatrist to agree to write the script for compounding.  They think that's a hassle.  But it might make your life sooooo much easier, if you had a month at a time (maybe with 1 refill for a month of hold) already made up for you in slow release.  I'm sure the compounding chemist would love the challenge!

[peggy]

so, 10 days ago I took my first 10% taper after my massive updose 2 years ago.  Down to 67.5 ish - (or 25 beads).  No problems at all, didn't notice anything. Will hold here for 4 weeks - or a whole packet of capsules.  

 

Feeling very well, sleeping blissfully and have lots of energy.  We are taking our whole family to Bali tomorrow for 10 days - 3 adult children, 2 of them have partners and the one year old grandchild. 

[Fresh]

Hi  peggy ,   I just caught up with your thread since you came back this year.    How are you since your first decrease?   

 

Hope you're having a wonderful holiday in Bali  .

 

Best wishes ,  Fresh

[peggy]

thanks for stoppy by Fresh...

 

we had a wonderful family holiday - lovely village by a quiet beach. we babysat a lot and let the 'kids' surf as much as they could.  had time to read and relax.  and consumed copious amounts of lovely fresh grilled fish with slatherings of spicy balinese sauces.  did a jigsaw puzzle, did some daily meditation and didn't cook at all!

 

no problems with my first decrease - i took a second one a few days ago and so far so good.  

[Fresh]

In March 2013 you asked if you need to wait months after a decrease in case there's a delayed fall-out effect.    

How do you feel about that now?   I worry about that too , and I don't want to "rinse and repeat".

[peggy]

i don't really know about months and months - i do think for me there is a delayed effect. My last reduction during 2012 and into the beginning of 2013 was quite controlled, but when i got to lower doses my method of counting beads led to my doses going up and down too much.  I eventually got a scale, but it was too late - without rereading my thread, i think i worked out that by counting beads i was oscillating between 11mg and 19mg.  I also had quite a lot going on in my business and we had a few cash flow problems so was under a bit of stress.  I think that if i thought about what was going on in my life and held at about 20mg for a few months i would have been ok.  I think several longer holds through the reduction even if things are going well IS a good plan. So, I might stop at 37.5mg for a few months - 37.5 is a good time to stop because it's a whole capsule and gives a break at counting or measuring! 

[AliG]

  Hi Peggy, I just wanted to say a big thank you for your support and encouragement, to me . Thank you for your understanding with the insomnia, I'm going through, and your helpful hints. It sounds like you've been through a lot, but are coming out the other side. At least this time you're aware , and have a plan. I so wish I had known about tapering.  Good luck with the hold, and I'm hoping your symptoms

lessen . I hope you had a lovely Easter break.   Best wishes,    Ali.

[peggy]

Just dropping in to my thread to update my tapering.

 

We were holidaying so i did 2 x 10% tapers with two weeks in between - otherwise i have been diligent in maintaining 10% at 3 - 4 weekly.  I have not noticed any change in the way i feel - most noticeably no withdrawal effects.  Sleeping well and good energy.  

[Lexy]

Hi hope you are still doing well.

 

As per your signature when got towards the teens mgs. You crashed. Can you tell what you experienced? And why you had to go all the way back up to 75mgs.?

I'm worried I'll feel worse than I do now when I get to my teens.

I have all classic symptoms, however what i thinks helps is that up to now I've had good sleep. Will that go away too? Sorry for so many ?'s.

[peggy]

Hi Lexy,

the last time i tapered i was counting beads.  I wasn't prepared for the wild fluctuations between the number of beads in each 37.5mg capsule.   Without rereading my thread i think by the time i got down to about 14mg, my dose was actually probably fluctuating between 11 and 19mg.  So, i bought a scale but didn't really get to use it before i crashed.

 

I don't think i needed to go back to 75mg, i probably could have settled on much lower, but as is the case with all my crashes my ability to see reason goes out the window - i over react and go up to much.  I did fart around for a while by going up small amounts - i think i tried 18mg for a few weeks but i just wasn't feeling 'solid' - i would have days when i would rate myself as a 2 then the next day a 6, then back to 2.   I needed to get back to some sort of stability as quickly as possible because our only income was from our business and our bills were mounting.  

 

I didn't really have the 'classic' symptoms (what ever they are) - anything i feel seems to be very mild - until it's not and it slaps me in the face with crippling anxiety and ruminating thoughts that crowd in and prevent me from breathing. I think i had some fractured sleep for the first few days after a reduction but that was probably the most of it.  When i knew i was probably in trouble I began to have some niggling thoughts that seemed to drop into my mind and stick, they then just got bigger and bigger and heavier and heavier.  I did try meditation, relaxation, exercise and all the regular CBT stuff.  

 

When i went up to 75mg I felt like a total failure. I felt that i had just wasted two years counting tiny beads and focussing on getting off effexor for me to end up back where i started.  I made a decision to stay where i was for a good while, lick my wounds and then reevaluate after the dust settled.  That is where i found myself in early 2015 - thinking again about another taper.

 

I do think that if you go slow enough you should be able to manage without your symptoms getting worse - I have just not been able to hit that sweet spot of slow and steady, i seem to be like a snowball going down a hill - gaining momentum!  I hope i don't repeat it again!

[Lexy]

Thank you for your reply.

You are very kind. I'm am trying to learn as much as I can from other people's experiences.

Thank you

[peggy]

I am so unsure about how to proceed with my taper.  I am currently away from home and in the past i have made up my whole medication supply for my time away. this time i didn't have time, so i have been doing it weekly.  Somehow i got mixed up with the conversion of how much was in the capsule and how much to decrease.  

 

What i SHOULD have done, was weigh the contents of the capsule and then take 10% out of that amount - but i tried to convert it to active dose and then reconvert it.  I thought i was right and was opening a capsule, pouring out how much i needed and then repackaging that into a gel capsule.  I ran out of 37.5 mg capsules and was using some stashed 75mg ones and when i had a new 37.5 mg script filled i realised that i had somehow miscalculated and had just started to make a reduction to half a 37.5 capsule (18.75mg) - i should have been on about 24mg.

 

I HAVE been feeling unwell the last week or so, low mood and anxious thoughts which are the hallmark symptoms of my tipping in to the danger zone.  

 

I think i am acutely sensitive when i get down to the 20's.  I have updosed back to about 28mg - where i was before i went away.  I did this by taking beads OUT of a capsule - but i know that is not completely reliable either.  It seems that a little variation day to day at this dose my body can manage, but when i go under the 25mg (ish) dose it sends me over the edge. I don't like to wait and see if it settles - last time i did that i ended up against the wall.

 

I really wish we could get the immediate release effexor here (brand name) so i could have it compounded. I have spoken to a couple of compounding pharmacies and they have said they will do it, but the just weigh (or count beads) - but they probably have better scales and can do it more accurately.  I am not completely satisfied that the $40 one on ebay is accurate enough.

[Altostrata]

That's a difficult call, peggy. Are you away from home temporarily?

 

In a pinch, it might be worth it to you to have capsules made up by a compounding pharmacy so you can have an accurately measured dose as long as you're away from home.

[peggy]

yes Alto i am away temporarily - i get home this week - mid week.

 

i have continued to have low mood and anxious thoughts - i am not sure how to describe the feeling, but i feel that it's not ME here - i don't feel like ME - i said to my husband that it almost feels like i have been lifted up and placed back down at right angles - does this make any sense to anyone?

 

On the physical side I have a funny tummy, nausea in the morning and some diarrhoea.  

 

BUT, I am trying to not engage - through the day the feelings can wax and wane a bit - they can even sometimes disappear completely - through no effort - it is a little like a the clouds parting and the sun shines down again. But it still leaves me feeling vulnerable and shaky.

 

Surprisingly i am sleeping (so far) really well - sometimes straight through the night without waking, but not feeling rested when i do wake.  My dreams seem to effect the way i feel when I get up too.

[Altostrata]

Maybe help your digestion out with enzymes and probiotics?

[peggy]

Yes Alto, I take a probiotic everyday - and have for the last 6 months or so

[peggy]

I ended up updosing again from around 28 to 31.5.  The reason for this is that i figure that i can tolerate small differences in dosage when i am taking only about 20 beads or so from a capsule.  As I have noted before, the variation in numbers of beads can be up to 10%.  I was weighing them for a while and even the weights were different.  Although that could be the scale.  They are also highly charged jumping beads and getting them out of the capsule, onto the scale to the right amount and then back into a capsule often results in losing some and then trying to pick them up and put them into the capsule.  And for me stability is the most important factor.

 

Its been about 2 weeks since I updosed.  I think i am feeling consistently better.  My anxiety was not over the top this time - i could have possibly ridden it out.  I am so scared of that though in case I end up like last time just getting worse and worse and then overshooting my correction by more than I did.

 

For the last 7 days i have done a 30 minute meditation every day.  I have tried many times to do this and i  manage for a couple of days and then fall off the wagon.  I really do think this might have been the key to me bouncing back.  I have been doing the Body Scan with Jon Kabut Zinn narrating it and i feel so cocooned by his voice.  I am trying to enter into a different relationship with my anxious thoughts. To observe them rather than get sucked into them.  I was a little more successful in being able to accept that they were there and not to try and change them.

 

I have also been able to take it easy. Apart from some babysitting the grandchild for a few hours each day (and that was giving me joy) I have not done much- which has been so good because I was away for work when i started feeling bad - I had to work 30 days straight for 10 hours a day.  I have done this job for the last 11 years and this is the first time it has slapped me as being too hard.  

 

My plan is to consolidate for a month and in the meantime try and find a pharmacy that will make me a liquid,  I know that i will prob have to dose twice a day because my effexor will no longer be CR.  And I worry about the effect that  changing over from the brand name CR to whatever they use for compounding  will be.  I asked one pharmacy who said they just count the beads!!!!!   So, I don't even know if that is going to be an option.

[KarenB]

Hello Peggy,

 

What a lot of Effexor you've got rid of.  I've been reading your thread cause I'm all the way back at 136mg or something.  That's food for thought what you say about meditating and observing your anxious thoughts, I need something to do with mine too.  

 

Hope this next month brings more stability for you,

Hugs,

KarenB 

[Altostrata]

peggy, you can take part in capsule and part in liquid -- that's probably the least problematic way to switch to liquid.