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ChessieCat

ChessieCat: so I'm not the only one (Pristiq / desvenlafaxine)

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Junglechicken

Hi JC,

 

I've just noticed your post.  I appreciate the encouragement.  Whoever would have thought that this would be such a long, slow process.  After my research, I'm now wondering how the human guinea pigs on the clinical trials end up after taking these drugs.

 

Thanks for your support and for the compliment about my website.

Very good point CC, and we can infer that the clinical trials cant have lasted that long. Also how far out from when the guinea pigs have stopped taking the drugs are their symptoms actually monitored??

 

It's awesome what you're doing - thank you x

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ChessieCat

Hi everyone,

 

Just wanted to let you know that I am managing all right.  I understand the grief process (from experience unfortunately) and have learned that the best way is to not fight it and to allow the feelings instead of trying to stifle them.  I'm very thankful for the tools I have learned and have recognised when I have been bordering on becoming hysterical and been able to use my concentrated deep breathing to settle myself.

 

Ironically I am looking forward to experiencing a storm (hopefully this afternoon) where I am not trying to keep the dog from destroying the house.  In the last day I have been realising how much I had been working around her issues.  I don't regret that I did, but part of me is relieved that I don't have to any more.  It's a mixed bag.

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ChessieCat

I've been going okay and went to my casual work for 4 hours yesterday.  Sadly my boss's cat had diabetes and went to pet heaven too on the weekend.  Thankfully I knew about it because I had emailed her and we both managed to get through the day without falling apart.  My 17 year old cat Aimee (when she's naughty she is Amelia Jane - English children's book by Enid Blyton who wrote Noddy) is being very demanding.  I think it's a combination of missing Freckles and the cooler weather.  I'd rather her be like that than not wanting anything to do with me.

 

Over the last day I've had a phrase popping into my head at the weirdest times.  It gets very annoying after a while.  At least I know I'm not going mad.

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SkyBlue

 

At least I know I'm not going mad.

 

 

Chessie, sometimes I think "we are all mad here" (Alice in Wonderland)….  :P

 

Glad to know it sounds like you are doing all right. I LOVE thunderstorms too. <3

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nz11

Hey cc had any more thoughts on starting a 'best of videos' thread.

I think that is a good thread to have.

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nz11

 

Hi JC,

 

I've just noticed your post.  I appreciate the encouragement.  Whoever would have thought that this would be such a long, slow process.  After my research, I'm now wondering how the human guinea pigs on the clinical trials end up after taking these drugs.

 

Thanks for your support and for the compliment about my website.

Very good point CC, and we can infer that the clinical trials cant have lasted that long. Also how far out from when the guinea pigs have stopped taking the drugs are their symptoms actually monitored??

 

It's awesome what you're doing - thank you x

 

Just read this.

From what i am aware the trials only lasted about 4 weeks .

My understanding is that if they had gone to 6 weeks in some cases  placebo would have beaten drug cohort hands down . So they stopped it at 4 weeks. Furthermore many people were dropping out of the trial like flies in an aerosol advert  due to side effects not to mention i suppose the dead bodies which were piling up that needed to be hidden by scientific misconduct and statistical shaningans.

 

Basically if you have taken an ssri for more than one month you are now a guinea pig in  a massive chemical experiment.

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SkyBlue

How was the weekend, Chessie? 

 

Nz, a best-of videos thread is a great idea and I would like to add this video, Coming off Psych Drugs by Daniel Mackler. It's wonderful; 

a lot of stories and fairly non-political (at the moment I get overwhelmed by thinking about the politics, money, etc involved 

in this--maybe someday I'll have the energy to engage, but right now I need to focus on self-care): 

 

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ChessieCat

Hi NZ and SkyBlue,

 

Thanks for stopping by.  I'm considering what wording would be best included in the first post describing what type of videos to post.  Any ideas.

 

UPDATE:  Feeling a bit more tired than I had been.  I realise that it is probably part of the grief process.  Felt a little bit manic on Wednesday.  Been getting muscle cramps over the last couple of days.  Took magnesium this morning and it seemed to ease the bad one I woke up with.  Need to get magnesium to add to water to sip.  The one I have is very gritty.

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nz11

Whatever you decide and write it will be fine cc, your decision will be a good one

....my favourite vid is in the wings just waiting to be posted

...unless of course you beat me to it which may well be the case....

 

..take a risk!!

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ChessieCat

Woohoo!!!  Thanks for letting me know.   They must have been about to publish when I emailed them.  Doing what we are able to can make a dent.  Hopefully this will be a huge dent.  I realise too that it is a combined effort.  If NZ hadn't mentioned that MIA didn't have SA in their Helpful Resources I wouldn't have known about it and followed it up.

 

I've recently had an email from one of my Email Campaign receivers saying that one of their clients has said they want to get off their AD so I said that if they join SA they will get the support and information they need.  (If that member is reading this, welcome!!! :) ).

 

There's another similar Email Campaign in the planning stages.  It will take a bit of time to get it together though.

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bubbles

Well done ChessieCat!

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SkyBlue

Wow… that is excellent for MIA viewers to now have SA as a resource.  :)  

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ChessieCat

Emailed them about it and apparently this was an old page (PP was there too so I advised them that it is now defunct).  Anyway, it's all good.  We now know that SA is there and will most probably be included in the Helpful Resources (or whatever they call it).

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ChessieCat

UPDATE:  Good news on the last dose drop.  I decided to go down another 2.5 mg even after the loss of my dog (3 weeks previously) since it was a 4 week hold and I was feeling okay withdrawal-wise.  On the 3rd day I did get some popping noises in my left ear throughout the day but no pain or pressure (may not be WD symptom but seems a bit too coincidental for it not to be but thought I'd record it here for info).  I will wait and see how I go with this hold.  I have plenty of 5 mg capsules but only 4 weeks worth of 2.5 mg ones.

 

Still slightly amazed that I'm still not down to 50 mg, 6 months after trying to halve my dosage, but definitely thankful that I'm doing it the best way.  And of course I have no idea how I'd be feeling now if I'd stayed on the 50 mg from Oct 2015.  Sometimes it would be nice to know what the outcome would have been of the alternative choice.  But that is not the way it is so we do what we do with the knowledge we have at the time.

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KarenB

Lovely update CC. 

 

PS, I really like you 'Are we there yet?' in your sig.

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Freeby60

Hello, ChessieCat-

 

Just thought I'd stop by to see how you're doing! I really appreciated your support when I needed it????!

 

I hope you are doing well-

 

Best,

Freeby60

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ChessieCat

UPDATE:  Had ear pressure for about 2 days in week 3 of this 4 week holding period.  I've decided to reduce again today by another 2.5 mg.  Next drop will take me to 50 mg!!!

 

Been feeling low over the last week but I've just done my 3rd week of working 3 days in a row so it might just be that I'm a bit tired from my new routine.  I'm enjoying the work I do and I am supported and valued by my 2 bosses.  I have 2 volunteer jobs at 2 different not for profit organisations and do 1 day at each and also work 1 day casual at one of them.

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SkyBlue

Hi Chessie! 

 

That is so great that you are working those hours, and are valued by your bosses. 

 

Keep it up! :) 

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ChessieCat

On 16 June I drop to 50 mg which is a tablet dose so I've been holding longer than 4 weeks because it is convenient and cheaper than taking compounded capsules.  I've been planning my taper programme and calculating what capsule doses and quantities I need so I can get them compounded.  This hold on 50 mg will probably end up being about 8 weeks which I hope will stand me in good stead for continuing to taper.

 

My next 6 planned drops are 2.5 mg with 4 weekly holds.  That will take me to 35 mg.  After than I will drop to 34 mg then start dropping by 2 mg and hold for 4 weeks.  I will see how I go before deciding on when to start dropping by 1 mg, although I am hoping to be able to get to 28 mg or even 26 mg before having to go slower.  Anyway, at least I've got the next 6 months worked out.

 

There are pros and cons to using compounded capsules.  Pro:  Mentally I know I will be on a particular dose for x number of weeks.  Con:  Having to predict the length of holds.  When I see the compounder I will ask about having liquid made because that may be helpful to supplement with if I find I have to hold at a dose for longer than 4 weeks, and it also might work out better for making the 1 mg reductions rather than having 1 mg capsules.

 

The joys of tapering :wacko: but I'm not complaining.  At least I am feeling a big improvement from being on 100 mg and I feel more like I am living my life, at least more than I was.

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scallywag

Congratulations! 

 

I understand the appeal of a standard size tablet. No counting or weighing or ... :D

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nz11

Congratulations on getting to 50mg

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ChessieCat

Hi peeps and thanks for dropping in.

 

Thought I'd just do a bit of an update here so I can look back on it if needed.

 

Still on 50 mg tablets.  Still got another month of 50 mg tablets left so I have the opportunity to continue my hold if I feel like it.

 

Two weeks ago I was in an office for the day and kept smelling a room freshener smell.  I've always been sensitive to smells, at some times worse than others.  The next day I noticed that I was incredibly irritable.  My poor cat copped an ear bashing!  Since my dog's demise the cat (nearly 18) has been walking around meowing an awful lot.  This particular day it was driving me crazy.  The irritability seemed to reduce over about 1 to 1.5 weeks.  Now I realise that this may have been withdrawal, it may have been the chemical scent or it may have been a combination of the two.

 

I've also noticed in the last week, possibly 2, that my right side jaw has been sore.  There's a possibility it may be connected to the above.

 

One thing that I find is that because I am informed of the withdrawal symptoms, whenever something crops up I think, oh it may be withdrawal but I find I don't worry about it because it is most probably "normal" and nothing to be concerned about.  I am very pleased that I am able to do this and not dwell on every little thing.

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scallywag

CC - your comment about brushing off things as normal in withdrawal made me smile.  How delightful that you've freed yourself from dwelling on their occurrence.

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ChessieCat

Hi scally

 

Thanks for the comment and I'm pleased I made you smile.  Smiling is good :D

 

Even now I am getting the pain in my right jaw and have got some ear pressure and pain but knowing what it is means that it doesn't scare me so I don't end up with secondary fear.  I do find, though, that when I have symptom/s like this that my breathing becomes more shallow, which in turn causes a bit of an anxious feeling (but not over the symptom/s) and I have to make a conscious effort to try and do controlled breathing because it is harder to do it automatically at these times.

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nz11

CC just wanted to let you know i started a favourites video thread in off topic.

I couldnt wait any longer. I know this was your brain child.

Feel free to post.

regards

nz11

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ChessieCat

Well I'm off to the doctor's for a new script so I can get my drug compounded so I can start tapering again.  It will end up being a 3 month hold on 50 mg.

 

During this week I have been feeling tired.  I ended up going back to bed last Saturday and had about 2 hours' sleep but was in bed for possibly 4.  It's been several months (at least) since I have had to have a nap. It's made a nice change being able to get through the day and be normal tired.  But this tiredness is an all day tiredness which I put down to hay fever, but I have no other of my usual symptoms of hay fever (not even an itchy or runny nose) so I am beginning to wonder if it is in fact being on 50 mg and it's time to drop.  Thinking back it may have come on gradually over several weeks because I've been feeling like it is time to start tapering again, whereas earlier on I was happy to just stay on 50 mg.  I've just remembered that I have been getting the occasional dull headache over the last couple of months.

 

It will be interesting to see how I feel after my next drop.

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ChessieCat

Saw the doctor today and found out that the lump on my head which I discovered on Tuesday morning is a swollen occipital lymph node so it seems I'm fighting an infection or virus of some sort.  That might be the reason for me being tired.

 

I had a chat with my GP about my earlier withdrawal symptoms and how I have been tapering and he agreed that it is necessary to go slowly.  I hadn't seen him in person since he told me to alternate 100 & 50 tablets.

 

Put my tablets in for compounding today and can collect them tomorrow so will probably start my taper on Sunday.  Getting 40 mg, 30 mg, 2.5 mg and also 1 mg.  I've made my calculations based on dropping 2.5 mg every 4 weeks, but if I don't have any issues I may only hold for 2 or 3 weeks before doing another drop.  I'll wait and see how things go.  I don't need the 1 mg capsules yet but thought I'd get them made up so that if I need to I can fine tune my doses if I have issues. 

 

I asked the compounder about the slow release and he told me it is in the capsule, not added to the ground up tablet.

 

Edit:  Just been reading back a bit over my last few postings and I'm really thankful that I had noted down my plan for tapering off 50 mg because I had actually forgotten :o .  I've got a spreadsheet with the doses and quantities which I used to calculate what doses I needed and how many tablets I would need to provide the pharmacist but what I wrote above is so much clearer.  I'm also thankful that I worked out what I needed well before I needed to because I don't think I could have done it at the moment. -_-zzzz

 

Edit:  I forgot to add that the backs of my eyes feel bruised.  They were sore on Monday and I thought it was from supervising my daughter driving on her learners but maybe not.

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ChessieCat

I've decided that because I'm going from tablet to all capsules I will do a week of 50 mg all capsules.  Depending on how this goes I may have to consider splitting my dose.

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ChessieCat

Well I'm very disappointed at the moment :(  Adam my compounding pharmacist, who made a big deal of giving me different coloured capsules for my different doses last time, has made them all white this time. :o

 

I've decided that I will be sensible and use a weekly pill keeper with a day for each week and set them up on a weekly basis.  I can't imagine me being alert enough first thing each morning to work out how many of which dose I need.  I'm bound to muck it up or, worse  still, spill the silly little things.  But it's all good, at least I'm not weighing powder or counting beads like many members are. :)

 

On a positive note, I had a chat to one of the other pharmacists today who has some knowledge of compounding and he was very interested in hearing my own story of ADs and about how many of the members here have to taper slowly, especially the lower they get.

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bubble

Just wanted to greet my favourite cat :)

 

I'm glad you sorted out your pill situation and are doing well. It's great to see you around helping people with your great skills.

 

Hugs,

 

Bubble

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ChessieCat

Hi bubble, thanks for stopping by and thanks for the compliment.  Much appreciated.

 

Well after some indecision about what to do I decided at the very last minute this morning, as I was getting my dose out, to drop to 47.5 mg all capsules rather than take 50 mg all capsules for a bit.

 

This is for a few reasons:  considering my commitments over the next 2 weeks (and I don't have enough tablets to get me past the 2 weeks, and didn't want to wait that long anyway), my desire to get tapering again and that taking 50 mg would have messed up the number of capsule dosage calculations.

 

For my own record capsule quantities:  40 mg x 100, 30 mg x 100, 2.5 mg x 200, 1 mg x 100

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SkyBlue

Hope it goes well, Chessie!  Let us know. 

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ChessieCat

Thanks SkyBlue!

 

So far so good :)   I've had 5 full days of taking 47.5 mg using only compounded capsules (40 + 5 + 2.5) as one dose taken when I get up in the morning and no issues.

 

It's a bit of a relief because I was a tiny bit concerned about getting symptoms again after feeling okay for 3 months on 50 mg.  I realised that it was understandable to feel that way and didn't dwell on it but I know it was there in the back of my mind.  And I got to the point where I was sort of excited about starting to tapering again.  Wow, this is a weird journey!

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SkyBlue

It is definitely good to be tapering again … and definitely a weird journey! ! ! ! :) 

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ChessieCat

UPDATE:  Started noticing a small amount of anxiety last night and it seems to have increased a bit this morning.  I'm going to set a beeper for an hour at a time so I can check in with myself and do some concentrated deep breathing. 

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