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

[Gridley]

Thanks, ChessieCat.  I have come a long way.  I am managing to get off the Lexapro and I reduced from 75 mg to 25 the Imipramine that I'd been taking for 30 years.  

[ChessieCat]

Well I have a bit of exciting news.  My daughter and grandson are coming to stay for a few days BUT that's not the exciting bit, the exciting bit is that I am FEELING EXCITED!!!  It's been a long while and it's so good.  At the beginning of May this year, which I was taking 25mg Pristiq, I bought a brand new car and I was excited but it was a dulled excitement, definitely different to how I'm feeling now.

[primekittycat]

YES CC!!! It's so good to feel emotions again

[ChessieCat]

Well I saw my GP today and had an interesting conversation with him, or should I say I presented a mini lecture.  I related my "couldn't type and could type after 4 hours after updose" story because I don't think I had ever told him and he listened intently.  I also mentioned the difference in my dulled excitement at 25mg in May compared to my recent real excitement at 19mg.  I told him that I haven't had any issues taking only capsules of Pristiq.  I also told him that tapering at 10% every 4 weeks I will be off mid 2020 but I am feeling so much better that I'm not worried about that.  I mentioned that I do get a few withdrawal symptoms.  I also told him about the compound pharmacist's comment about a customer taking 18 months to get off 1mg of escitalopram.  That surprised him, so I mentioned that it is stronger than citalopram.  I also managed to mention about delayed withdrawal and my previous cold turkey and how I felt great but then got hit with withdrawal and mentioned that members here see their doctor and the connection isn't made that it is because of going off too quickly and that they need the previous drug not a new one.  When I made the comment that I realised that there are people who can probably get off ADs without problems he shook his head and said "not many".  I was very pleased to hear him say that.  That was a YES!!! moment.

 

It was great to be able to provide him with first hand experience of tapering.  I've done a little bit more to help get the word out.  Hopefully he passes on this information to his colleagues.

[baroquep]

Good for you Chessie, one more informed person, mod, member and hopefully one more informed doctor will eventually get the message out there that these drugs have the potential to cause a lot of trouble for a much larger percentage of people than is currently reported.  

[ChessieCat]

Thanks baroqueq.

 

I went back for a follow up to my xrays this afternoon (unfortunately bad news - I have arthritis in my knees ) and the doctor had a trainee doctor in with him and whilst he was out of the room I told her about what happened when I halved my Pristiq and couldn't type.  I was very surprised when she said that ADs needed to be got off slowly.  I told her that I get my tablets compounded into monetary denominations so I can create my dose and she said oh that's a good idea the pharmaceutical companies should be doing that.  I replied, the companies want us to stay on the drug.  I also mentioned that many drugs are being prescribed off label.  I told her that the message needs to be got out there and that doctors need to stop turning immediately to the prescription pad and refer people for non drug coping techniques.  The ironic thing was that there was a pharma rep in with the other doctor and they were then going to be seeing my doctor after I had finished.

 

Every little bit helps!

[LexAnger]

And yur are a hero in helping the world to be a better one, or more accurately less evil in this regards.

 

hats off!

[ChessieCat]

Thanks Lex, I appreciate your comment and support.

[ChessieCat]

It's really great to be able to share that even after 25+ years of continual use of an antidepressant that the brain does heal.  I mentioned recently that I got excited and it happened again today.  And I got so excited that I jumped up and down.  And it happened twice!!!

 

What had me jumping up and down in excitement?  I got to see a mummy and baby whale tail slapping and breaching.  The background is that I have been on 5 whale watching boats and even though I have seen whales from a distance I had never seen them breach or tail slap.  And what made this an even better experience was that it was so unexpected.  We were checking out a car for my daughter to buy and they live on the coast.  The owners even let me borrow their binoculars.  And yes, she did buy the car too!

[brassmonkey]

Congratulations CC.  That"s a whale of a break through. (Can't help it, the drugs never cured my sense of humor).  Sightings like that can be truly magical.  We had one afternoon driving down the west coast last year where we were spotting them every few minutes.  Drove out on a lookout point and watched for an hour or so as they swam and breached all around the point.  I'm so glad you got to experience it.

[ChessieCat]

Thanks Brass.  I certainly had a whale of a time.  And the great feeling is still with me this morning.  I may not be off Pristiq by my 60th birthday, but this is certainly a very special present!

 

This time 2 years ago I was about 1 week into the 3 weeks of cog fog after dropping from 100mg to 50mg after realising that I was suffering mild serotonin toxicity.

 

I truly thank God for me finding SA when I did.

[manymoretodays]

Hi ChessieCat,

 

I just wanted to welcome you to 60 years of age(I think I saw that somewhere)!!!   Happy belated 60th!!!!!!   It's a milestone.  I think I am just a little ahead of you by a couple of months.  And thank you for all you do around here.

 

Love, peace, healing/recovery, and growth(neuroplasticity),

Best,

manymoretodays

[ChessieCat]

Thank you MMT on all counts.  However I'm not quite at 60, another few weeks to go, but it is going very quickly so will be here before I know it.

[ChessieCat]

UPDATE:  All is going well with my taper.  I've just completed 3 weeks at 19mg and 3 weeks at 18mg.  Reduced 17mg today.

 

Instead of trying to get 10% reductions I am reducing 1mg for 3 weeks and as I get closer to 10mg (when I do this will depend how things go) I will hold for 4 weeks.

 

 

[manymoretodays]

Hi CCat.  Did you go flying yet?  I saw that somewhere.........you were trying to find something novel to do to see in your 6th decade.........and it sounded exciting.  I am........just........getting around to..........really celebrating my 60th.  I let it kind of "get to me" unfortunately and then just could not do the nice vacation/family visit I had planned.  S'okay though.  I do so much really need to change some patterns of my own still.

 

Best,

mmt

[ChessieCat]

UPDATE:  After 3 weeks at 17mg I reduced to 16mg this morning.

 

Hi MMT,

 

Thanks for dropping by. Yes, I did go for a helicopter flying lesson.  I had never been in a helicopter before and I spent some/much of the flight mesmerized.  I did take over the stick (speed and turning) control and made a couple of turns but never got to the point of being able to use the foot pedals.  That didn't worry me.  The weirdest thing was when you go faster the helicopter's nose goes down.  The Calibri G2 has all glass front and my natural survival instinct seemed to kick in whenever this happened because the ground felt like it was just under my feet so I would pull back.  I should have been looking at the horizon and keeping the blades in the top of my vision.  I did manage to do that towards the end.  During that night I seemed to doze on and off and every time I roused up I was trying to control the helicopter.  I was very tired the day after and the second day (yesterday) I noticed that my anxiety level increased so I took extra magnesium and that seemed to help.  So far this morning I am feeling more "normal".  On the whole I was able to use my non drug techniques to keep myself fairly calm. And yes, I enjoyed it.  Would I do it again?  I'd like to but can't really afford it and I think if you do something a second time it wouldn't have the "freshness" and excitement that the first time did so I might feel disappointed.  I wanted to do and experience something different which I did and I now have the memory of it.

[manymoretodays]

Awesome.  You did it!!!!  Good work with your "non drug coping" too!  Thanks for sharing that experience.

 

............and one more mg. down.

 

 

[ChessieCat]

Thanks MMT.

 

Just adding a note here for my own reference.

 

Recently developed hives on my right thigh (took Polaramine for several nights).  The lead up to this, stress in personal life, followed by a burned wrist with hot tea (healed well).  Lead up to 60th birthday with realisation of how quickly those 60 years have gone.  Helicopter lesson.  Poor sleep and anxiety.  Another 1mg reduction to 16mg on 17th November after a 3 week hold.  Now 25th November and hives are almost gone.  Anxiety has reduced.

[ChessieCat]

I've decided it's time for me to take a break from SA.  Recently I got new glasses and can now see to sew and I have lots of things which I want to make.  My taper is going well and I am now down to 15mg Pristiq.

 

Merry Christmas and a Happy New Year to all SA members.  Remember to learn and use non drug coping techniques.  They can make a big difference to how you feel whilst getting off your drug/s and off course will be beneficial as a life skill afterwards.

[nz11]

Hey cc don't take too long a break we need cool knowledgable (speedy typist) moderating cats like you to keep things ticking over here. Business is picking up. 

 

Wow you are down to 15mg that is an achievement. Good going.

 

Thanks for all your help on sa. 

You are an asset to the forum or put it another way ..we all think you are the cats pyjamas.

 

All the best with the sewing.

My neighbor writes songs about sewing.......shes a SINGER songwriter!!

 

Make sure you keep popping in and updating on your progress to ZERO mg.

 

nz11

I'm a fabricaholic on the road to recovery... just kidding, i'm on my way to the fabric store!

 

[ChessieCat]

Just keeping a record here about my hives.  The last lot cleared but I have a new batch.  Not sure if it is food and/or stress related (on Thursday I  was told about the death of a work colleague).  I have been eating some different foods (deli coleslaw and potato salad) and some grape tomatoes.

[grandmaD]

It could be either or both.  You might try to avoid tomatoes, they are a known allergenic.  I am pretty sure that they give me gout in my feet/toes.

 

Lately started eating strawberries as they are growing in the garden and every time I got a headache.  That's nothing new, but we always still try and blame foods/events!!  Anyway, stopped eating them and NOT HAD A HEADACHE SINCE.  This could just be another improvement in sympoms, but sure is weird, since my average is 2 a week.  Anyway, not touching the strawberries, not game!

 

I also had a rash for almost a week, so eventually went to doc and he didn't know what it was...  it is now better ... still don't know what that was about!

[ChessieCat]

On 12/09/2017 at 5:35 PM, ChessieCat said:

My plan is to reduce by 1mg with 3 week holds until I reach 13mg.  From 13mg to 10mg inclusive I will reduce by 1mg with 4 week holds.

 

I managed to get away with only holding for 3 weeks on 13mg and have been on 12mg for 11 days.  Because I think that my anxiety started increasing after I reduced to 13mg and again after I reduced to 12mg I have decided that I will hold for 4 weeks from now on.  It may have been due to the hot weather but it's interesting that I've noticed it both times after dropping my dose.

 

Depending on how I am feeling and what is happening in my life at the time I might hold for a couple/few extra weeks when I get to 10mg.  I'm starting a new volunteer role this week and might be losing my casual work in mid-April when my boss moves interstate.  No need to rock the boat.

[ChessieCat]

Making note that I've been experiencing some ear pressure.  May not be withdrawal related but wanted to note here for reference.

[Downbutnotout]

 

On 21/09/2017 at 3:57 PM, ChessieCat said:

Well I have a bit of exciting news.  My daughter and grandson are coming to stay for a few days BUT that's not the exciting bit, the exciting bit is that I am FEELING EXCITED!!!  It's been a long while and it's so good.  At the beginning of May this year, which I was taking 25mg Pristiq, I bought a brand new car and I was excited but it was a dulled excitement, definitely different to how I'm feeling now.

 

 I’m happy for you!

 

Edited February 24, 2018 by ChessieCat
removed duplicate quote and comment about it

[ChessieCat]

Thank you DBNO,

 

I've been on an AD for about 25 years and I hadn't realised how numb my emotions had been for all those years.  During that time I was widowed at 41 with 2 daughters 11 and 13.  I wasn't really there for them during their teenage years.  I have found out in recent years that they keep many things either to themself?/themselves or between themselves because they didn't want to worry me.  And of course that has impacted their lives, they are now 30 and 32.  However I understand that I did the best that I could under the circumstances.  That is all we can do. I don't like it but I can't change it so have had to accept it.  And a similar thing happened to me when my dad died unexpectedly when I was 19 and my mum remarried the next year.  My mum wasn't really there for me the way I needed her to be when I had a broken engagement, then a broken wedding (6 weeks before the date) and then a husband who had a mild heart attack 2 years after I got married.  It's affected me but again it can't be changed and she did the best she could.

[Downbutnotout]

21 minutes ago, ChessieCat said:

Thank you DBNO,

 

I've been on an AD for about 25 years and I hadn't realised how numb my emotions had been for all those years.  During that time I was widowed at 41 with 2 daughters 11 and 13.  I wasn't really there for them during their teenage years.  I have found out in recent years that they keep many things either to themself?/themselves or between themselves because they didn't want to worry me.  And of course that has impacted their lives, they are now 30 and 32.  However I understand that I did the best that I could under the circumstances.  That is all we can do. I don't like it but I can't change it so have had to accept it.  And a similar thing happened to me when my dad died unexpectedly when I was 19 and my mum remarried the next year.  My mum wasn't really there for me the way I needed her to be when I had a broken engagement, then a broken wedding (6 weeks before the date) and then a husband who had a mild heart attack 2 years after I got married.  It's affected me but again it can't be changed and she did the best she could.

Oh, those are very tough breaks you got. I had a psychologist once tell me that every mother has regrets on how she did with her children. We could’ve always done better.  It’s interesting how history sometime repeats itself. Yes, I also regret taking these pills, but I wish right now, that I felt as excited as I did when I took them. I feel like I had a frontal lobotomy. It’s very sad. All I can do is hope someday I’ll feel like you do right now! 

[ChessieCat]

9 minutes ago, Downbutnotout said:

All I can do is hope someday I’ll feel like you do right now! 

 

I am definitely feeling improvement, however, I am still experiencing times of depressed mood.  Whereas before I was having bad and worse days, they changed to not so bad and bad days with some worse days, and then a bit better days and not so bad days with some bad days thrown in amongst that, then better (not enough to be called good) days and not so better days with not so bad and some bad days mixed in.  Now I do have some days that I would call good.

 

I did an 8 week online course which was free in Australia and I was provided with support during that time and 3 months after.  It was a cognitive behaviour therapy course and I have found it very helpful.  Here is a self guided one CBT Course:  An Introductory Self-Help Course in Cognitive Behaviour Therapy

 

I've also done part of a mindfulness course which has helped me to recognise when my body is tense, eg when cleaning my teeth and I realise that I'm brushing frantically, or preparing something in the kitchen and I realise that my shoulders are hunched up and I am a bit tense.  For me it would be body awareness.

 

I believe that if I had been taught the things that I have learned in the last few years, and I've just turned 60, and had also had professional support during the many crises (there were more during and after my marriage that I haven't mentioned) that I would not have ended up on antidepressants.  But again, I can't go back and change it.

[Downbutnotout]

2 minutes ago, ChessieCat said:

 

I am definitely feeling improvement, however, I am still experiencing times of depressed mood.  Whereas before I was having bad and worse days, they changed to not so bad and bad days with some worse days, and then a bit better days and not so bad days with some bad days thrown in amongst that, then better (not enough to be called good) days and not so better days with not so bad and some bad days mixed in.  Now I do have some days that I would call good.

 

I did an 8 week online course which was free in Australia and I was provided with support during that time and 3 months after.  It was a cognitive behaviour therapy course and I have found it very helpful.  Here is a self guided one CBT Course:  An Introductory Self-Help Course in Cognitive Behaviour Therapy

 

I've also done part of a mindfulness course which has helped me to recognise when my body is tense, eg when cleaning my teeth and I realise that I'm brushing frantically, or preparing something in the kitchen and I realise that my shoulders are hunched up and I am a bit tense.  For me it would be body awareness.

 

I believe that if I had been taught the things that I have learned in the last few years, and I've just turned 60, and had also had professional support during the many crises (there were more during and after my marriage that I haven't mentioned) that I would not have ended up on antidepressants.  But again, I can't go back and change it.

I’d say you are a very analytical person. Thanks for the course. I went to a new counselor who is going to be doing  cbt with me. But she really upset me because I had to go through my past last week. I thought I’d accepted it, and put it behind me. I’m not even sure going through it is wise.  I think the antidepressants really cover that stuff up.. I swear I led a pretty happy life before this year. I don’t know how I’m going to get back there without drugs. My  failures are because I did things I wasn’t suited for. But like you say, you can’t go back there. If I hadn’t had a run in with a volunteer boss who was an idiot and triggered me, I would’ve been fine. Of course I was very wrong in the situation too. You cannot redo the past. I just will be happy when I’m feeling some positive emotions again, and have a good laugh. I used to laugh a lot and have fun. And appreciate and feel for my family. If I could do that again, I wouldn’t care if I got another thing back. 

[ChessieCat]

My submission to the Scottish Parliament:

_______________________________

PE1651/TBC

Submission of 5 February 2018

 

I am a 60 year old female.  Antidepressants for approximately 25 years.

 

I now believe that if I had received appropriate counselling and support and been taught, and used, non drug coping techniques that I would never have needed to take a psychiatric drug.

 

My background, year and age:

 

1976 – 19 – father died, broken engagement

1977 – 20 – mother remarried

1980 – 23 – married

1982 – 25 – 31 year old husband had mild heart attack

1985 – 28 – unexpected emergency caesarean

1987 – 30 – husband open heart surgery for 4 by passes, ended up having 7

1988 – 30 – caesarean after trial labour

1992?  35 – first antidepressant use

1994 – 37 – husband home permanently – Wegners Granulomatosis

1999 – 41 – husband’s death

 

Originally prescribed Prozac which caused weak muscles.  I ended up having trouble walking because it affected my hips like when you are pregnant and your ligaments loosen.

 

Long term citalopram prior to current one.  Late 2010 to late 2011 I had about 5 major life stressors.  I had a major breakdown at my daughter’s wedding.  From what I now know about ADs I think that the citalopram may have reached tolerance.

 

During 2012 I decided to cold turkey citalopram.  I felt great for a few months but then became very sick, basically bed ridden, for about 2 and ½ weeks with what felt like the flu with aches and pains but was not the flu.  I had no appetite and had trouble eating and lost 8 kgs in weight.  From what I now know I believe that this was withdrawal from the cold turkey of citalopram.

 

Not long after this I was prescribed Pristiq 50mg.  I was told by the psychologist that I would be on an antidepressant for life because it was like a diabetic needs insulin.  I felt okay and had incredible focus but felt no pleasure in anything.  The Pristiq dose was increased to 100mg.  I started feeling more pleasure.

 

My diastolic blood pressure rose after increasing to 100mg Pristiq and my regular doctor did not make the association between the two and increased my BP medication.

 

Every now and then my heart would feel like it “flipped”, which other people may use the term miss a beat.

 

Almost every day I would have a 2 hour sleep and still sleep through the night.

It wasn’t until my dose got lower that I realised that I had been feeling constantly on edge and unsettled.

 

2015 I realised that I was sweating a lot in the middle of winter.  I also had aches and pains.  I began researching Pristiq side effects and realised that I was most likely suffering serotonin toxicity.  

 

October 2015 I reduced my dose from 100mg to 50mg Pristiq.  I experienced extreme cog/brain fog for 2 weeks and everything I did required my undivided attention, even walking.  I began researching antidepressant withdrawal.  That was when I discovered the website survivingantidepressants.org.  Several days later  I was unable to type.  Being a professional typist since the age of 16 I knew that something wasn’t right.  It had been suggested by the website moderators that I increase my dose of Pristiq.  When I couldn’t type I took extra Pristiq and after about 4 hours I was able to type again.  Because I had a benchmark I knew that it was because I had reduced my Pristiq too quickly. 

 

In Australia Pristiq is only available in doses of 50mg and 100mg and the advice by Pfizer is that tablets should be taken whole.  Thankfully other members on the Surviving Antidepressants forum had successfully cut Pristiq tablets and also had them compounded with slow release formula and experienced no problems.  I was fortunate enough to locate a compounding pharmacy which has been compounding my Pristiq for me since November 2015.  Surviving Antidepressants recommends tapering by no more than 10% of the previous dose every 4 weeks.  I have been using this recommendation as a guideline for my taper.

 

After I updosed I held at 75mg for 2 months.  I then attempted a 10% reduction.  By the 3rd day I had intense and painful ear pressure and a front of brain headache.  I realised that I could not continue to tolerate the pain and pressure and I updosed by 2.5 mg to 70 mg.  This made a big difference.  Again within a few hours I felt relief as the pressure subsided and I only had a very mild headache which lessened over the next few days.  After 3 more weeks I reduced by 2.5 mg to 67.5 mg and only suffered tolerable ear pressure for a few days.

 

When I got to 50mg I held for 3 months.  I did a 7 week hold at 20mg.

 

As my dose got lower I started to feel more like my old self.  I started to realise how numbed my emotions had been over the many years on an antidepressant.  In May 2017 I bought a new car and felt some excitement (25mg Pristiq) but it wasn’t until September 2017 (19mg Pristiq) that I experienced real excitement and realised that back in May it had been a dulled excitement. 

 

As at the beginning of February 2018 I am down to 13mg.  Even though I have been tapering carefully I have still been experiencing withdrawal symptoms.  Thankfully they are mild but there are times when I am unable to do certain things.  It is mainly cognitive things which are affected but I do experience physical withdrawal symptoms as well.  Trouble concentrating and reading, mild anxiety, random thoughts, appetite changes, muscle cramps, occasional sleep issues.

 

I appreciate the opportunity of relating my experience.

_______________________________

 

 

Edited January 30, 2019 by ChessieCat
correct length of time before updosing

[ChessieCat]

Something exciting to report.

 

I've just realised that I've recently been getting my imagination back.  This is what made me realise:

 

Re:  tapering

 

I've just thought of it like going for a walk and the dog getting burrs in its fur.  We could yank them out but that would hurt the dog, and it might turn on us.  But if we take time and patiently pick them out one by one they will be burr free in the end - if we can get them to sit still for long enough, that is!

 

 

I've thought back over the last few weeks and I've definitely been using my imagination which I hadn't been able to do before.  It took a great effort just to think of basic things and think of words let alone things up new ideas.

 

Yippee!!

[FarmGirlWorks]

2 hours ago, ChessieCat said:

I've just realised that I've recently been getting my imagination back.

ChessieCat, thank you for this update. Congrats! As a person who works in the creative arts, the lack of imagination engendered by SSRIs has been horrifying. Last week I could actuslly "feel" my brain almost having a new thought. So glad to hear it happened for you!

[Downbutnotout]

Thanks for sharing your story.  

[ChessieCat]

Have been running out of multivitamins, iron and B12 over the last week.  Been feeling really tired over the last few days.  Not sure if it is connected but noting it here for myself.

[AliG]

Well done, Chessie. ~ I would check your blood levels first and then go from there before you top up. Often, you can have too much iron ~ it just pays to be careful

 

Ali  

[ChessieCat]

Thanks Ali.  I don't eat very much red meat.  It's usually chicken, ham/bacon and eggs.  I noticed when I started taking iron tablets that my nails became stronger, even though I had been taking calcium tablets.