peggy: 13 years of Effexor

[dalsaan]

Hi Peggy

 

Sorry to hear things haven't been great. How has your sleep been? I'm wondering if your fatigue is a sign that your body wants/needs more sleep and is this possible for you?

 

Perhaps go up to 16 but try and get more sleep in. You've had a lot of things on your plate, you need to be gentle with yourself

 

This is just my view, I'm confident you will make the best decision for yourself

 

Dalsaan xx

[peggy]

thanks dalsaan - sleep has been an issue for a few months now - my frozen shoulder hasn't helped -although last week my sleep was blissful - all over the shop really!. I have been getting at least 8 hours a night though - just not unbroken. last night being the exception - probably only got about 5.

[strawberry17]

I think Alto means that if you go up to 18mg you could overshoot your bolt, which is exactly what I did before Christmas, I decided to go up a bit too far and felt worse, I think sometimes when you've been tapering a long time your system can get excrutiatingly sensitive to seeminly small dose changes. I think 16mg would be a better compromise as well. The adrenaline surges suck

[Altostrata]

Exactly, strawb.

[peggy]

well, i met you in the middle and went up 3! - it pretty difficult to tell exactly - it could be 2.9 or 3.36 - based on the variation in the number of beads in a capsule - which are any where between 125 and 148 in a 37.5mg capsule. I am unsure where to go from here with my withdrawal method. Coincidentally i had a doctor appointment yesterday and we discussed this - i could have actually been having a fairly wide fluctuation in my dose between 12.9 and 14.9mg - which of course is a big variation. There is the issue of the varied size of the beads and the number of beads in a capsule. I think i will need to go to a jewellers scale to be more accurate. I think i will also start counting the beads in each capsule, work out the dose in each bead for that capsule and then make up only two doses from each capsule and then discard the remaining few beads. Thats another reason why i wanted to go up 4mg - that is closer to half a capsule, so i could probably get more consistent dosing whilst i work out a plan.

 

We can't obtain regular effexor here, so i can't make a liquid. I did speak to a pharmacist a couple of years ago and he did say he could probably make a liquid from the beads but that it would lose it's extended release. I just don't like the word 'probably' in a sentence discussing my effexor LOL.

 

Last night was pretty awful - i was still getting those waves of adrenaline - so i got up and took a spoonful of brandy - (i was thinking of strawberry here and her whiskey) - that was enough to break the surges and even though i felt like i dozed and not really slept, i wasn't having the surges.

 

I have to go away for work tomorrow night and i think that fuels my anxiety in this state - i have a 12 hour drive, a week away, working long days talking to people all day long. Very, very unpleasant when you are very anxious - being confined in a car for 12 hours yesterday would have been torture. So, i am hoping i will have calmed down by then.

[dalsaan]

Hi Peggy

 

I feel for you trying to manage the variation in your medication. Have you spoken to a large compounding chemist, they may have more experience with making it into a liquid in general and might be more confident now.

 

Re the work stuff, I know how daunting this can be, particularly when you are dozing rather than sleeping. Hopefully things will settle for you soon. Try not to focus on what could happen/might have happened. It makes it more difficult. Think of a time when you felt daunted but got through it. You can do this. You are an experienced taperer! And you have courage and tenacity

 

I'll put out some good vibes to the universe for you. (please don't underestimate how powerful this can be, it gets me a car park every morning : )

[peggy]

thanks dalsaan - i could do with some good vibes

[peggy]

i just counted out my next fortnight - i used one capsule for two days and discarded the rest. i have no idea if this is a good move or not. This is what was in my capsules:

 

136

149

137

134

130

115

130

 

the 115 one threw me for a loop - i only used half of that one - that would mean each bead had .34mg.. so in those 7 capsules there was a difference of between .25 and .34 each... i have been working on an average of .28mg each....

 

I don't know how to go forward to ensure a consistent dose each day - i guess a scale is the only way.

[jr1985]

I would definitely start using scales. The problem with trying to work out the dose of each bead is that it assumes each capsule has exactly the same dose. My capsules had quite a wide variation in the weight of the beads, suggesting the dose varied quite a bit. It might be fine if you're stable and not tapering, but small variations in dose could cause problems for those of us who are sensitized. The alternative is to get the average amount of beads in each capsule and base your taper plan on that, but that still causes dose variation.

[strawberry17]

More good vibes from a strawberry for your busy week, that kind of event would throw me into a bit of a panic, hope it all goes well for you.

[tezza]

Good vibes from here, too, Peggy!

 

That's a big jump in the number of those beads, I'd definitely use scales if I were you.

 

Hugs

[Nikki]

Hi Peggy....

 

Bless your heart for doing the Effexor taper by carefully counting beads and monitoring your cuts. It takes guts and your have it.

 

Some cuts can be okay and then others can be the pits.

 

Peggy thanks a bunch for replying on my posts. I enjoy hearing from you:)

[peggy]

feeling pretty anxious today - today is the 4th day of my updose. Not sure how much of my distress is attached to what i have to get through over the next few days... currently 8 hours into our 12 hour drive. knitting in the car - each stitch is one stitch closer to wellness!

 

one of the worst things about anxiety is the dry mouth and birdcage feeling i get. Staying in a hotel with a gym and a sauna - so i plan to ride a bike and sweat out some anxiety tonight!

[strawberry17]

I knit Peggy, it's soothing isn't it? but doesn't knitting in a car make you feel queasy?

[dalsaan]

Hi Peggy

 

 

I'm shaving my head to raise money for the leukemia foundation. Do you knit beanies? Lol

 

It's not going to be pretty

 

Dalsaan

[peggy]

good for you dalsaan! what a great thing to do!

 

Strawberry, i can't read in the car, but i can knit - i don't need to watch every stitch, it is just a simple stocking stitch long cardigan - started last year when i was wobbly!

[peggy]

have managed to get through 3 of my 12 hour days - only 2 to go. My anxiety has been much better -just still have that 'feeling' that I am not quite right - it's almost an awareness thing - when i am 'back to normal' there is no awareness of my mood - it's just normal - sounds a bit weird doesn't it?

[Altostrata]

Given the wide variation among those capsules (!!!), maybe reducing 1 bead every x days might be a better way to go. Vary the intervals according to how you feel.

[peggy]

totally agree Alto - it's very frustrating!

[peggy]

Phew, made it through the work commitment and got home about an hour ago. One thing that helped me was going down to the gym in the hotel every day at 6am and doing 20mins on the cross trainer and then 20 mins in the sauna and spa. The sauna really helped to mellow me out. I wish i had one at home!!!!

[dalsaan]

Well done Peggy. Glad you're home in one piece

 

Dalsaan x

[peggy]

measured my next week's doses out the other day - once again a big variation - this time from 115 to 152beads... I have a scale on order. I am looking forward to getting it and seeing if the contents of the capsules vary as much in weight too. I don't know how i will proceed if they do. I really wish we could get a non XR tablet version here and then i could crush and dissolve.

[areyouthere]

Peggy,

 

I just wanted to drop by and say Hi Peggy. It must be very frustrating to not be positive by what amount you are RI &/or tapering. I can see how it might add to anxiety. The scale is a great step to help remedy the uncertainty.

 

I also wanted to give you kudos for getting through the challenging work situation recently. Your success gives hope and is an inspiration in determination!!!! I especially noted your efforts in self help i.e.. exercise etc.

 

These examples serve as an affirmation to the rest of us that it is very important to explore, diversify & use those self help strategies that work to help us through the more challenging times of a taper.

 

After years of being controlled by chemicals it is very empowering to realize that we have some control over how the chemicals affect us!!!

 

Once you get the scale let us know what you think of the # of beads in the capsules etc!!!

 

Have a great day!

 

RU

[peggy]

Thanks for stopping by RU!

 

I was just going to update my thread by saying i am still struggling a bit. Don't quite know how to put it - some anxiety - not raging, but definitely there and some moderate depressive feelings.

 

Yes, I did get through the first work commitment, unfortunately, I have another bigger one in about 13 days. I don't usually have so many away from home work events, this is an unusual time. This one will be two weeks of 11 hour days - I will be on an expo stand interacting with customers. I can have a day off every week and will get an hour break in the day, but i think that is all adding to my anxiety - i always think 'how will i cope' - It is our business so i can't call in sick!

[basildev]

Hey Peggy,

 

I know that feeling. I run my own business too and earlier this week all I wanted to do was just cancel all my clients and 'call in sick'.

 

I often stress about 'how will I cope?' after a particularly bad night's sleep.

 

Yesterday all I wanted to do was curl up, drink wine and eat fat, sugar and carbs in no particular order.

 

That's certainly a big work commitment you have ahead of you and being away from your routine (travelling) can add to the stress of it all.

 

I really hope you feel better soon.

[peggy]

my scale arrived today!

 

so, i calibrated and weighed the contents of 7 37.5mg capsules. They all weighed either 127, 128 or 129mg. I think that .001 or.002 degree of difference is OK for $40 scale. So, my big differences previously counting were really more to do with the size of the beads. That does mean that i have been see-sawing in my dose probably by about 3mg over a couple of months prior to the emergence of my anxiety/depression 4 weeks ago. Maybe when my dose was a little higher I had more of a buffer in there, but as i got lower that buffer went.

 

As i said a couple of posts up, i am still not feeling good - today is probably the worst i have felt for a week or so... that always makes me more anxious too. I have added a couple of things though - increased my magnseium (which shouldn't cause me to flatten out) and have taken glycine for 4 nights now - not sure how i feel about it. Maybe i will leave it off - i did reduce it to 1gm last night, my sleep was good, but i felt really flat and unmotivated, even a bit teary at times - (which increases my anxiety)

[dalsaan]

I'm glad your scales arrived. That see-sawing in dose could not have been good for your system. I think with greater stability you should see some positive change.

 

I really feel for you and others who have to struggle to get an even dose. I'm on liquid so it's pretty easy for me. I take my hat off to you

 

Dalsaan

[tezza]

Yes, I sympathize with all who have to try to get those little ball out of the capsules. I can imagine what a pain that must be.

 

Even when I was trying to weigh pieces of tablets, it was a pain. I had to constantly re-calibrate the scales.

 

One of my meds is in liquid form already and the other one I make liquid.

 

I wish you the best and hope you feel better soon.

 

Hugs,

Tezza

[peggy]

Hi everyone,

 

I was hoping i wouldn't have to come back and say that i am still struggling. Last couple of days i have felt quite raging anxiety and last night quite poor sleep - today feel fatigued and anxious again.

 

This is my timeline:

Jan 22nd down 10% to 14mg

Ten days later some anxious thoughts waxing and waning that got a little worse over the next few days.

February 7th - up 5% to 14.9mg

No real improvement - some days OK, other days anxiety increasing.

February 18th up to 17.8mg

 

Continued to wax and wane - anxiety can be over the top some days (like today) other days just bearable. It hasn't really gotten any worse than before i updosed, it just isn't getting consistently better. On previous updoses i have felt more 'solid' by day 25...

 

I don't know whether or not I should go up a bit more or not. I have another expo/fair next week and i am sure that is contributing to it as we haven't done this one before and don't really know what to expect except lots of people and 12 hour days. I just don't know how i will get through if feeling like this. I get into a cycle of intense anxiety and then can't sleep at night and then the anxiety about that kicks in on top of having to deal with the brain fog of little sleep.

 

help!

[basildev]

Hey Peg,

 

So sorry you're struggling!

 

I'm not experienced enough to offer you advice about updosing but I just wanted to let you know I'm thinking of you.

 

Sending you hugs xx

[strawberry17]

Just wanted to say I'm thinking of you as well, I'm in a very very similar place to you as you know.

[peggy]

thanks Basil and Strawberry - it's nice to know I am not alone

 

xxxx

[tezza]

Hi Peggy,

 

I'm so sorry you are struggling! I'm seeing now, just how hard it is to get off the last little bit, I've seen it with Strawberry, Dalsaan and you. I wish so much I could help the three of you. It seems so unfair to work so hard and so long, then run into a brick wall like this.

 

I pray things get better for you soon. Those are not just words, when I say I will pray for someone, I mean it. I fear it would be dangerous to say it and it be a lie.

 

Love and hugs,

Tezza

[Altostrata]

This might be a good time to simply hold steady and track symptom patterns.

[peggy]

I don't know if i can wait it out Alto - i know i can't 'get away' from how i feel but i am feeling pretty desperate right now. In the middle of the night, i thought i would probably like to go back up to 37.5 mg.

 

I am feeling pretty discouraged. I thought going 10% every 3 or 4 weeks was going fine and maybe if it wasn't for all those dose fluctuations in recent times it would have been OK, but i am scared to wait too long feeling like this or just go up in little bits. I have gone up by greater amounts before and i have settled. Maybe this is the problem this time..

[peggy]

So, i talked to my Doctor over the phone - she aware of withdrawal, but has not worked with someone doing a 10% taper like me. She suggested i go up only to 27 not 37.5 for a few days first to see if i have a positive response to that.

 

I must say i am a little scared, i think it is hard to know what to do, being in withdrawal is not good for the brain and going up too much might be too stimulating. But if taking too long to stabiise means your nervous system is unhappy for longer, could this be what causes the sensitivity? Like reinstating quickly after a CT. I am really trying to line a theoretical model up to match my experience and my hope.

 

My last two updoses before this time were 24mg - 75mg - settled in 3 - 4 weeks (January 2012) and then 15 - 37.5mg - settled in 3 - 4 weeks (July 2012)

 

I have not been sensitive in the past, except for too many dropping too quickly -but i know that our brains are not rubber bands - i realise that each time is different, but i really don't think i can do much more of the way I am feeling especially with my work commitments over the next 3 weeks.