Tinker: withdrawing from Effexor / venlafaxine

[Tinker]

I was given amitriptyline for severe insomnia and fluoxetine for cognitive function 30 years ago, after 6 months bedridden with Epstein Barr/Chronic Fatigue.  Both were very successful, and I was able to return to work and later retire.  I stopped amitriptyline a few years ago, no longer needed.  Kept taking fluoxetine, which may not have been needed anymore.  Fluoxetine "pooped out" early this year and I became very apathetic and anhedonic. I was put on 75 mg Effexor mid-April, without any washout period for the fluoxetine - neither I nor, apparently, my doctor, knew any better.  It was very good at mood and energy improvement, but I had fairly bad physical side effects, and asked for lower dose.  37.5 mg still caused bad side effects.  Like a fool, I stopped cold turkey one month ago.  I knew I should count beads and taper, but simply could not force myself to put one more mg of this stuff into my body.  Now I am paying the piper, and paying a lot.  I found this site a few weeks ago, and have been looking for others who have severe physical WD symptoms.  I may be lucky in that I have no emotional or cognitive symptoms, or unlucky in that I seem to have all of the physical ones.  First 3 days off, my feet and calves swelled up like water balloons, along with neck and shoulder pain 24/7, which is still ongoing, but better.  Muscle spasms in thigh muscles that made me actually scream one night during first week off.  Chest tightness (muscle spasm?) that almost sent me to the ER several times. Shortness of breath has not gotten better so far, and insomnia is very severe.  I feel terrible in the morning and all day until around 5 PM, then I seem to have a surge of wakefulness that lasts until 1 or 2 AM.  Fatigue will not let up.  I can't reinstate Effexor, as the side effects while taking it were much the same as WD, only less severe.

[Dejavu]

Hi Tinker, and welcome to SA. You will find lots of information and great support here.

 

It sounds as though you are indeed, in withdrawal. Whether it is from the fluoxetine , the effexor, or both, is difficult to tease out. Since you were already in poop out from the fluoxetine, I am asking one of the more senior mods to take a look at your situation. 

 

I can assure you that all the symptoms you describe in your post are classic withdrawal symptoms from psych drugs, and are "normal" under the circumstances.

 

Could you please complete your signature? It will appear at the bottom of each of your posts and will help us make a determination on how best to help you. I've included a link for instructions on completing your signature below.

 

Again, welcome. One of the more experienced mods will be along to assist you shortly.

 

https://www.survivingantidepressants.org/topic/18343-please-put-your-withdrawal-history-in-your-signature/

 

[Altostrata]

Welcome, Tinker.

 

19 hours ago, Tinker said:

I was put on 75 mg Effexor mid-April, without any washout period for the fluoxetine - neither I nor, apparently, my doctor, knew any better.  It was very good at mood and energy improvement, but I had fairly bad physical side effects, and asked for lower dose.  37.5 mg still caused bad side effects.  Like a fool, I stopped cold turkey one month ago. 

 

What was your fluoxetine dosage? What were your physical side effects from Effexor?

 

How have your symptoms changed in the last month?

[Tinker]

Fluoxetine dosage was always 20 mg.  When I started 75 mg Effexor, I had what seemed like 2 very good days, although I felt some what over-stimulated.  Following those 2 days, I began to have muscle pain in neck and in front of my shoulders - like across my upper chest,  along with shortness of breath and bad insomnia - only managed 3-4 hours of sleep/night. After 21 days of hoping side effects would pass,  I requested dose reduction to 37.5 mg.  Reduction made absolutely no improvement in symptoms. 

 

The past month: after 16 days on 37.5 mg I CT'd on June 18, not knowing any of what I've since learned here.  After that, almost immediately, the much worse physical symptoms listed in my introduction began.  They have not improved much, if any, to date, except that the instances of extreme chest pressure and the muscle spasms in thighs have not recurred.  I think I am more exhausted now than I was a few weeks ago.  During second week of WD, I took one 20 mg fluoxetine and got a good night's sleep for one night, but am reluctant to go that route.  I have several times taken Tizanidine at bedtime to relieve neck and shoulder pain.  That gave enough short term relief for some sleep, but I do not want to have yet another WD nightmare, so have stopped that as well a week ago.  Now taking fish oil and biocitrate magnesium (had been taking mag for several years, anyway), N-acetyl cysteine and Tessalon for breathing issues.

 

Just for information, I had a similar sort of manic reaction to Synthroid 4 years ago, and am now taking and tolerating very well Thyrovanz 100 mg daily.  Beta-blockers and any statin have also been intolerable for me due to side effects.  Also for information, I am not at all depressed now - am actually feeling better mentally, in spite of physical symptoms, aside from anxiety regarding WD.

Edited July 17, 2019 by Tinker
added some information on symptoms, supplements

[Altostrata]

It looks to me like you got withdrawal syndrome from suddenly going off fluoxetine, which was incompletely masked by the Effexor, plus you had adverse reactions to Effexor. When you went off Effexor, the adverse reactions to that went away but your fluoxetine withdrawal syndrome came back full force.

 

As your experiment indicated, you'd do better with a bit of fluoxetine. If I were you, I'd get a prescription for liquid fluoxetine or make my own from capsules -- instructions in Tips for tapering off Prozac (fluoxetine) -- then try a dose of 1mg to see how it affects you. Believe it or not, often only this tiny bit is enough. You can taper off by miniscule amounts later.

 

Please let us know how you're doing.

[Tinker]

Thanks very much!  That theory sounds reasonable to me.  I have read the "Tips" link, and will probably try  dissolving 20 mg capsule contents in 20 mL of water, as I do have a 5 mg oral syringe around somewhere.  This site and your advice are a godsend - I could not figure out from which drug I was having WD symptoms, much less what to do about it.    BTW, a few days ago I realized that my one glass of wine in the evening was greatly intensifying symptoms, and that coffee was another possibly harmful drink, so I have stopped both as of yesterday.  Today was a very little bit better, though I guess it may have been what you call a window.  I am in my 70's, and pray I don't have to spend the rest of my remaining life dealing with this.  I am a bit encouraged by the fact that I have no psychiatric symptoms at all, which makes me think I should have been off of fluoxetine years ago, as I probably no longer needed it.  I will let you know in a few days how this works out, and thanks again. ( I am very excited at the hope of getting some sleep!)

[Tinker]

Thursday at 4 AM with no sleep I went off-script and blew the planned taper by taking one 20mg amitriptyline which bought me 4 hours sleep.  At 9 AM Thursday I prepared 20mg fluoxetine in 20mL water, by opening capsule and mixing. (I did this for a living years ago, so a little deja vu here - but where are my centrifuge and tubes, volumetric flask, and micropipette? 😉)  Yesterday and today feeling a little better after 1.5 mg each morning. although the one amitriptyline may still be contributing.  Muscle pains much better, fatigue, breathing and insomnia not better.  I tried walking around my house indoors to try to ward off perceived muscle atrophy, but could only manage 5 minutes before I had to sit down, exhausted.  I will continue current regimen with no more excursions,  and report back in a few days.  If this succeeds, I may stay  on this dose for a long time - I have enough fluoxetine on hand at this dose to last 4 years, which may be about the same as my life expectancy.  Sort of kidding here, but maybe not.  We'll see...  And thank you so much, for giving me a little hope. 

[Tinker]

Reporting on reinstatement at 1.5mg fluoxetine at 9 AM after only 3 days:  first day, good relief (probably partially (or mostly?) due to amitriptyline the night before.  Second day (Friday, shoulder and chest pain started up again around 5 PM. Third day (today) shoulder and chest pain resumed around 1 PM, worse than yesterday.  Insomnia bad every night (except for w/amitriptyline, which I don't want to repeat and muddy the results).  I  go to bed at 10 or 11 PM and cannot sleep until 3-4 AM.  The only thing that relieves muscle pain is a heating pad, but at 90-95 degrees here, that is not pleasant - also because of ongoing sweating issues.

 

I am very tempted to increase to 3mg, but not sure - any advice appreciated.  Thank you.

 

[Gridley]

2 hours ago, Tinker said:

 

I am very tempted to increase to 3mg, but not sure - any advice appreciated.  Thank you.

 

Keep in mind that it takes about 4 days for a dose change to get to get to full state in the blood and a few days longer for it to register in the brain.  Since you're only 3 days in, it's early to be increasing.  I'd give it a bit more time.  You don't want to reinstate too much, which can be destabilizing.

 

Please update your signature to reflect the 1.5mg reinstatement and the date.  Also please indicate the dosage of fluoxetine you were on from 1989 to April, 2019.

 

Account Settings – Create or Edit a signature.

 

[Tinker]

OK, thanks - I will give it at least another day before considering increase.  I've updated signature and added supplements.  MSM is for arthritic joint pain, very effective - I've almost managed to completely stop naproxen.  Thursday I managed to do a month's worth of laundry, take a shower and clean bathroom; today, couldn't possibly do any of that.  I guess I am trying to rush this as I have recently moved house; living in a total mess - so much needs doing and I find myself mindlessly watching TV all day and swearing at it a lot🙄 - just need to sleep! If I can arrive at a minimal reinstatement level that allows me to deal with current home situation (finishing unpacking, getting window coverings up, etc.), I will hold there unless that is wrong.  Sorry for TMI - have to vent somewhere... 

 

PS - never mentioned that I had a horrible deep cough 24/7 immediately upon CT fluoxetine and starting Effexor - my cats were terrified of me for a month as they thought I was barking at them, but that has diminished a lot since reinstatement.  It is hard to know what is due to CT withdrawal and what might be something else.  Sorry for TMI - guess I need to vent somewhere... 
 

 

[Tinker]

Update for 7/20-7/23:   Sat-Sun-Mon same - 3-4 hrs sleep, shoulder pain resumes around 5 PM.  Today, after getting  up at 8:00 AM and forcing myself to stay awake until 10 PM, slept from about 11 PM to 9 AM - finally!  If decent sleep continues, will hold one or two weeks at 1.5 mg to see if shoulder pain improves.  Thanks for all your help - 5 days of improvement feels like a miracle!  I apologize for having mention positive (unrelated) results for MSM supplement - I have learned this is frowned upon; won't do it again.

[Tinker]

Update for 7/24-7/29, 11 days on 1.5 mg fluoxetine:  Daily improvement with some rough spots due to erratic sleep pattern.   Shoulder pain slowly getting better, still worse at night.  Intolerance to heat is improving slowly.  Mentally, I feel better and more clear than I have in years - may be getting back to my original, naturally somewhat hyper, self.  Physically, I am getting there.  I am so grateful to this forum and  great advice from moderators!  

 

Found I do not have as much fluoxetine on hand as I had thought, and will need an Rx at some point in order to continue this regimen - how should I explain all this to my doctor (GP), who likely is not aware of all that I have learned here, and may think I am nuts?  Thanks in advance for any help with this.

[ChessieCat]

You don't need a doctor or other medical professional to be supportive of what you are doing, even though that would be nice.  Not many medical professionals understand tapering and withdrawal from psychiatric drugs which is why this site exists.  All you need is a doctor who will prescribe what you need.  Any doctor can prescribe.

 

If you need to get something specific from a doctor for your tapering then before you see your doctor, you might find it helpful to write a script and rehearse what you are going to say so that you can get what you need to taper.  Be calm, gentle but assertive.  You are the customer, it is your body.  Use words like I'd like to try this, or I'd prefer to do it this way.  If a suggestion is made that you don't want to follow, say I'd like to think about it before making a decision.

 

In your case if you are concerned that your psychiatrist or doctor wouldn't be open to you taking such a small dose (many think in terms of therapeutic dose, whereas SA prefers lowest effective dose), you could just ask for a repeat prescription and allow them to decide on the dose.  You can make DIY Prozac liquid.

 

I suggest you also check out this topic:

 

how-to-talk-to-a-doctor-about-tapering-and-withdrawal-what-to-expect

[Tinker]

Update regarding progress - I have been maintaining on 1.5 mg fluoxetine for several months.  Not feeling great yet, still a lot of fatigue and insomnia, but functional enough to live as a hermit.  Last week I tried 5 mg of melatonin at bedtime for 3 nights - had some great sleep, and then original WD symptoms came back. Now after a week of that, they are slowly getting better.  I know serotonin is the melatonin precursor so there is some interaction there, but, as they do not use the same receptors, how could melatonin have caused such a relapse?  Just wondering if anyone else has experienced this...