SCHope: Intro dealing with multiple SSRI's

[SCHope]

Hello to All,

   New to site.  49yM.  

1999-2019 Paxil CR 20mg started initially for Situational anxiety / Public speaking.  Multiple withdrawal episodes over the years with missed doses and attempted weaning

Became negative and angry over the years in general.  Always wondered why.  Assumed just work frustration

2017 began noticing new constipation.  Frequent feeling of having to go yet never could.

2018 noticed some straining post urination to empty bladder and some right knee weakness (tendons) going up and down stairs

Jan 2019-Sept 2019 Slow wean (I Thought) going down by 2mg every month from Paxil CR 20mg due to admission overnight for abd pain / constipation / ileus

March 2019 Thrombosed hemorrhoids from straining

April 2019 Fixed drug eruption to Advil cold and sinus I previously tolerated for many years.

September 2019 finished taper and off Paxil - Felt liberated!!

October 2019 some right eye aching fullness and some blurriness - Optho eval unremarkable

December 2019 new Hyperemotionality (crying on commercials, etc.)  Not me at all.  Not even close.

January 2020 Palpitations preventing sleep on a beta blocker - Event monitor with multiple PVCs

February 2020 Vivid dream one night with loss of urine upon awakening.  PCP ordered MRI with scattered White matter disease nonspecific

Saw Neuro with new Right posterior chest tightness as new symptom - MS workup ordered (Returned Negative).

March 2020 calf cramping / forearm aching / diffuse muscle twitching / Very easy early muscle fatigue even holding phone / Awakening tremors parkinsonian like with occ tremors entering sleep preventing sleep -  as if brain shaking at times / Excessive dreaming nightly and even when falling back to sleep for few minutes / paresthesias in legs / Periodic dizziness / Poor coordination / instability / difficulty handwriting / Shadowing double vision with true double vision on awakening with upward gaze / increased floaters / Feeling of restricted eye movements / Right eye "weakness" feeling / tinnitus / awakening poor urine stream which would improve over the day.  Out of work this month due to symptoms. 

April 2020 Tremors during day (Body / Head while at rest) / Generalized weakness / Fog headed

Klonopin 1mg at night started for awakening tremors and poor sleep 

Neuro said Cramp Fasciculation Syndrome - Tegretol started yet stopped after 2 weeks with worsening dizziness / Vision.

Discussed SSRI related symptoms.  Lexapro 10mg started with intolerance morning day #3 with Chest trembling / Fight or Fight response surge.  Neurontin trial stopped with dizziness / visual changes / instability.

May 2020  Cymbalta and Prozac trials stopped after third dose with awakening fight or flight surge / chest trembling.  Progressive erector paraspinal back muscle aching on standing / upright posture.  Left cervical radiculopathy pain new.  Steroid trial for radiculopathy did not help other symptoms.  Returned to work after cramp fasciculation syndrome reported diagnosis.  

June 2020  Worsening early back muscle fatigue with standing.  Needing to sit constantly to relieve muscle fatigue.  Progressive daytime tremors arms / chest / head.  Needing to use speaker phone at work as couldn't hold phone to ear without uncontrolled tremor.  Periodic dizziness persists.  Paresthesias and diffuse random persistent muscle twitching.

July 2020 Requip trial for tremors without improvement.  Out of work end of month with progressive early muscle fatigue with minimal use and progressive hand / arm tremors.

July - August 2020 evaluations at two major referral centers.  Unknown etiology.  ALS initial thought yet EMG inconsistent.  Brushed and dismissed SSRI involvement.  Alluded to psychiatric underlying cause.  Infuriating.

November 2020  New difficulty swallowing even small pills and increased urinary frequency every 30 mins / urgency.  Still with urinary straining and terminal constipation.  

December 2020 Third Major referral center evaluation.   Anxiety brought up in first Neurologist consultation visit despite videos of muscle twitching / instability, etc.  Again, infuriating.  Referred to Psychiatry at this Major center

January 2021 Bactrim trial for ? Prostatitis to urinary symptoms - no change.

February 2021 Regenerative Medicine eval / treatments - no change.  3  month supplement regimen started.  3rd Major Referral Center FU with Neuro / Psychiatry.  Told I had Generalized anxiety disorder and that I needed SSRIs.  Discussed my concern as to 20 yrs Paxil and temporal relation to symptom starting.  Told SSRIs don't do that.  Told SSRI would help with majority of symptoms if I just increase Benzo with Fight or Flight / activation symptoms.  Stated could not explain all symptoms and to FU with Neuro (who said GAD related FU with Psych).  

Feb 17 - March 19 2021 Trintellix trial stopped with worsening Tinnitus.  Noticed Short term memory name recall /  forgetfullness March to present.

April 15 - May 24 2021  Zoloft trial max to 50 mg and weaned off q 2 weeks with worsening right chest wall muscle tightness / dystonic like reaction 

June 2021 PCP sends me article referencing survivingantidepressants site and the similarity of stories / symptoms.  Return of some frontal dizziness, forearm aching, worsening muscle twitching, paresthesias, and worsening short term memory - name recall and forgetting to put car in park, etc.  Still difficulty with tendon discomfort and weakness.  Rheumatologist wondering Spondyloarthropathy diagnosis.  Reports no knowledge of AD prolonged withdrawal let alone tendon involvement.

July 2021  Return of urinary frequency / urgency / constant feeling of need to urinate with bladder burning like discomfort.  Continued Constipation.  Rectal pain episodes / spasm / proctalgia 3x in last 4 months.  

 

Supplements:  Cod Liver oil, CoQ10, Vit D/C, Vit E

 

Summation:  Lost and desperate.  DEsperately worried for my 2  boys and wife.  Trying to just get through to end of each day.  Lost all confidence in Medicine.  Angry at myself for ever taking Paxil to start let alone being coerced into repeated retrials of SSRIs for symptoms.  Very worried about the bladder / bowel involvement.  Hoping for recovery at some point.  Goal not to damage my Family any further in this process.  I have not handled it well.  

 

Questions:

1.  Anyone else with Bladder frequency / urgency / discomfort?

2.  Anyone with Tendon involvement with tendonitis for months / difficulty walking due to joint tendon issues on top of muscle weakness and early fatigue?

3.  Not sure how to wean off the Klonopin 1mg at night after >1yr use.

 

Thankful for this site, all of you willing to share, and Hope.

 

 

 

 

Edited July 7, 2021 by arbor

[arbor]

Welcome to SA @SCHope,

 

What a terrible, terrible ordeal you've been going through.  These are not unusual symptoms from use as well as withdrawal from the drugs.  It's amazing that the doctors couldn't figure out sooner what the drugs were doing to your health.  At the same time, I'm encouraged that it was actually a PCP who pointed you in the direction of SA.  Here you will find many others also dealing with your issues.

 

To be able to give you the best information, we ask members to summarize their medication history in a signature -- drugs, doses, dates, and discontinuations & reinstatements.  Just drugs, dates and dosages in a list format.    It helps to make this list as concise as possible. 

 

Account Settings – Create or Edit a signature.

 

To address your questions, some of these sites may be useful:

Urination and bladder issues 

What is withdrawal syndrome?

Why taper by 10% of my dosage?  

 

I also include this site for tapering small doses.  For further help with methods of factoring the dosage and vehicles for taking the medication, I include these sites.  Moderators can also help you with further questions if you have them.  

Simple BrassMonkey Slide tapering spreadsheet - Tapering

The Brassmonkey Slide Method of Micro-tapering - Tapering

I too was diagnosed with tendonitis early in my withdrawal.  It improved, but I still am vulnerable to flare-ups.  Quite a few members report tendon and related problems.  I encourage you to browse the site to read their reports.  There's a wealth of information especially under Symptoms and self-care.

 

This is your Introduction site where you can ask questions and connect with other members.

I'm glad you've found us, and I encourage you to share here and keep us updated.

Again, I'm so sorry for what you've gone through,

Arbor

 

[DinaDina]

On 7/6/2021 at 5:58 PM, SCHope said:

Anyone else with Bladder frequency / urgency / discomfort?

 

I have all of this symptoms for 6 months after taking Zoloft (I was taking it for 4 weeks).

[Yersinia]

On 7/6/2021 at 10:58 AM, SCHope said:

Angry at myself for ever taking Paxil to start let alone being coerced into repeated retrials of SSRIs for symptoms.

Please try to forgive yourself. You couldn’t have known what Paxil and the other drugs would do to you. Most doctors don’t know or won’t admit it. 

[Greatful]

@SCHope  You have endured a lot.  My heart goes out to you.  I hope you will find some comfort here on SA.  There is so much information available.  Any where from how and what these drugs do to change you brain, to the Symptoms and Self-Care forum.  Here you will find the many different symptoms that come with W/D and helpful coping skills by other members that are dealing with these issues.

Also go to the Success stories in the forums category.  These are very inspirational and  encouraging.

 

Please reach out to other members.  We are all struggling through similar things.  We want to help and support in anyway we can.

Remember you are not alone☺️ 

[normalhuman]

On 7/6/2021 at 10:58 AM, SCHope said:

.  Anyone with Tendon involvement with tendonitis for months / difficulty walking due to joint tendon issues on top of muscle weakness and early fatigue?

Yes, I had tendon pain in my thumb I first thought was overuse as I tapered Prozac, then after going into acute withdrawal (along with every classic wd symptom) it spread to my other thumb, several fingers, then over months progressed to almost all joints (& sciatica, & some numbness but no visible swelling of joints) to the point I could hardly walk, cook or do most tasks…thought I had RA but seemed to be the tendons/ligaments of joints. Thought my life was over, saw multiple specialists, have had all blood tests under the sun & no diagnosis other than possible fibromyalgia or an unknown autoimmune disease before it shows up in bloods, which means they don’t know…but it correlated with taper and withdrawal and only started getting slightly better after months back on a 3mg dosage. Although I don’t know if I would or wouldn’t have improved had I just stayed off all together considering how slowly improvement took but I’m too weak/tired to continue another taper for a while. Used to have insomnia but turned to constant fatigue so I also have CFS-type symptoms but after 6 months I’m showing some signs of very slow improvement and I can walk fine again but get sore easily and am exhausted by end of day. My life is a lot different now but I am mentally back to baseline but physically still struggling. All but 1 Dr deny Prozac having anything to do with it. No history of pain or joint pain of any kind while on or before AD’s but I’ve been on them about 25 years at this point.  Personally I think AD can mess with your CNS and or immune system and without them my body went haywire. Bladder issues on and off too but I also developed kidney stones which could be a factor there. Time will tell but I’m 7 mo out and doing much better. 

[SCHope]

Follow up:

3.5yrs off 20yrs Paxil via inappropriate taper / cold Turkey with progressive severe PAWS.  
 

Now Severe pelvic genital numbness, pelvic  hot-cold sensory symptoms, progressive Erectile dysfunction, progressive Bladder spastic symptoms  of urinary frequency, intermittent burning, straining to empty on max medication therapy, progressive Neurogenic bowel / constipation symptoms

 

Still severe sleep disorder with 4-5hrs duration on Lunesta, intense dreaming with mind awakening with tremors, tinnitus, dizziness, and sympathetic morning Surg.  Intermittent blurred vision with restricted eye movement on awakening at times, floaters.
 

Constant tinnitus.  Periods of dizziness.  Intermittent palpitations.  
 

Very early muscle fatigue chewing, brushing teeth, etc.  Numb fingers, humming Paresthesias in legs, new leg swelling.  

 

Periodic speech difficulty.  Poor coordination.  Poor memory, forgetful.  
 

Looking for any prolonged paxil withdrawal management experiences that may have provided value in assisting recovery. ? Low dose Lamictal value.  ? Low dose naltrexone value.   

 

At a loss.  Still on the decline.  Desperate.  Very appreciative in advance.

[Jimmyt]

Hi how are you doing now?

[SunAndSnow]

Hi sc hope, how are you doing now?