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Dizziness, vertigo, light-headedness, rocking or swaying sensations


squirrel

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II reinstated to Prozac 10mg after 9 months of terrible lexapro withdrawal. I just couldn’t take it anymore and needed relief (which it gave me). But now I am wishing I hadn’t reinstated as maybe I’d be better by now. And now I am suffering with bad dizziness and depersonalization even with a very slow taper. Gosh darn drugs! What do I do?! I haven’t stabilized in over a month even on a dose I previously felt good on! 

10mg Lexapro: November 2014 - May 2016 (tapered over 4 weeks)

10mg Prozac: March 2017 - Current (currently tapering) 

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20 minutes ago, Prozacboy said:

II reinstated to Prozac 10mg after 9 months of terrible lexapro withdrawal. I just couldn’t take it anymore and needed relief (which it gave me). But now I am wishing I hadn’t reinstated as maybe I’d be better by now. And now I am suffering with bad dizziness and depersonalization even with a very slow taper. Gosh darn drugs! What do I do?! I haven’t stabilized in over a month even on a dose I previously felt good on! 

 

Why did you reinstate Prozac rather than the original drug ? This might be why it's taking longer. They have slightly different pharmacological mechanisms.

 

I had the same and also reinstated after 7~ months. It's taken me 2 months to become more stable. I'm perhaps 50% more stable than I was before reinstating now. The first few weeks of reintroducing it were worse than the withdrawal itself, but after riding out these initial side effects, I'm better. 

 

It seems that for a long period of withdrawal destabilisation (say 6-12 months), then stabilising after reinstatement may take several months at least.

 

If I were you I'd hold steady for a month at least and see if there's an improvement in how you feel on average. Reducing when I did not feel well only ever ended badly for me. I wish you luck

 

Jay

  • 2008: Started Citalopram 30mg
  • Sept 2014: Tapered down Citalopram over 6 months and discontinued Feb 2015
  • Severe withdrawals peaked in July/Aug 2015. Totally housebound.
  • Sept 2015: Sertraline started @ 100mg on GP advice.
  • Oct to Dec 2015: Reduced to Sertraline 50mg due to side effects. 
  • Jan 2016 to March 2017: Tapered Sertraline to 2mg @ 10% per month. 
  • Severe withdrawals peaked again June 2017. Totally housebound. 
  • Diazepam: July 2017 5mg // Aug 2017 2.5mg // Sept 2017 1mg // 12th Dec 2017 0.85mg 
  • Sertraline Reinstatement: 23 Oct 2017 5mg // 15 Nov 2017 10mg // 23 Nov 2017 15mg 
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20 minutes ago, JamesF said:

 

Why did you reinstate Prozac rather than the original drug ? This might be why it's taking longer. They have slightly different pharmacological mechanisms.

 

I had the same and also reinstated after 7~ months. It's taken me 2 months to become more stable. I'm perhaps 50% more stable than I was before reinstating now. The first few weeks of reintroducing it were worse than the withdrawal itself, but after riding out these initial side effects, I'm better. 

 

It seems that for a long period of withdrawal destabilisation (say 6-12 months), then stabilising after reinstatement may take several months at least.

 

If I were you I'd hold steady for a month at least and see if there's an improvement in how you feel on average. Reducing when I did not feel well only ever ended badly for me. I wish you luck

 

Jay

Sorry I should have specified. I felt fine on the Prozac, the problems came when I began to taper the Prozac. I spoke to many many very smart drs, some of which even recognized my condition and the consensus approach was to reinstate with Prozac because it should be easier to taper as it has a much longer half life and is “gentler” with respect to it’s pharmacological properties.  

10mg Lexapro: November 2014 - May 2016 (tapered over 4 weeks)

10mg Prozac: March 2017 - Current (currently tapering) 

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I had this yesterday, and am sure it was stress-related, as I had a headache as well.

 

Yesterday was extremely stressful as not only did I have  UTI, but I had back-to-back appointments ending up with my hubby's work bash, and suddenly meeting lots of people.

 

To top it all, I will probably have to have my bladder looked at with a camera (cystoscopy).

 

Dose History: 19 Feb 2014 - Escitalopram 10mg daily June 2015 - Started taper, 5mg every other day July 2015 - 5mg every 2 days August 2015 - 5mg every 3 days September 2015 - 5mg every 4 days Sept 14th - Completed tapering, but at 7 weeks "drug free" I suffered serious WD symptoms as a consequence of "incorrect" tapering. Nov 25 2015 - Re-instated Cipralex @ 2.5mg daily. WD symptoms faded. Held at this dose and experienced "windows and waves". 12 Oct 2017 Reduced dose to 1.25mg. 13 Mar 2018 Reduced dose to 0.625mg (approx.). 16 April 2018 0mg. Windows and waves triggered by stress (IBS/reflux, headaches, sinus issues) Aug 2019 Mirena coil fitted 6 Jan 2020 MAJOR Wave hit 19 months following last dose (protracted WD).  Symptoms listed below Mar 2020 Mirena coil removal.

Therapy: Nov 15th 2016 Re-started therapy Jan 19th 2017 Started CBT Dec 2017 Started listening to Hypnotherapy CD (self-esteem). Nov 2019 Started couples therapy.

Supplements: "Bioglan" Biotic Balance Ultimate Flora 10 billion CFU, live Bacteria, Probiotic, suitable for Vegetarians, with Lactobacillus Acidophilus, Lactobacillus Rhamnosus, Bifidobacterium Longum"Pukka" Vitalise a unique blend of 30 energising botanicals.

Diet: 16 April 2018 Detox cleanse / anti-candida for 90 days. Jan 2020 Started "small plate" diet (i.e child size portions).

Exercise: Stretching, Yoga, Pilates, Spinning, Elliptical/upper body workout, walking.

Medical Test Results: 4 Jan 2017 Homeopathic Treatment starts 24 Feb 2017 Started weight loss program 24 Mar 2017 Naturopathic Treatment + anti-Candida diet started due to suspected Candida Related Complex (CRC). DETOXED for 7 weeks to "re-set" gut. April 2017 "Genova Diagnostics" Comprehensive Stool Analysis NEGATIVE; Full Blood Count (Normal) / Blood Cholesterol: 5.6 (Borderline) / Blood Sugar (Normal) / 28 Jun 2017 FSH 8.2 / 14 Nov 2017 FSH 17.7 Dec 2017 Blood Cholesterol: 3.9 (Normal) / Kidney Function (Normal) / Blood Sugar (Normal). December 2017 "Genova Diagnostics" Food panel allergy (bloodwork) analysis - a few "VERY LOW/VL" allergens; Mar 2018 "Genova Diagnostics" SIBO urine analysis: High Level of Yeast/fungal markers found in small intestine but NO SIBO.  April 2018 Thyroid (Normal) / Full Blood Count (Normal) / FSH (Normal). 16 April 2018 Started anti-Candida diet - 3 month protocol.   25 March 2020 All test results "Normal". CRP" 5 mg/L (normal range to 0-5 mg/L).

Symptoms:  Flu-like symptoms, anxiety, anhedonia, sinus headaches right-side (severe), IBS issues/reflux (severe)**, tinnitus, fatigue, inner tremor, nausea, chills/hot flushes, pounding heart, muscular issues including stiff left hip flexor, intense anger, PSSD (ongoing).  **Histhamine intolerance (suspected).

Major Life Events: 

Re-located to UK from Canada: Jan 2016

My father died: 5:05pm, Monday 5 Feb 2018 Last Lexapro dose: 16 April 2018 (its now been over a year since I quit ADs)  Moved house: Friday 23rd February 2018  "Divorced" toxic Mother: Monday 26 March 2018 Starting working again: 19 November 2018  Diagnosed with: 5th August 2021 PTSD/C-PTSD Diagnosed with: March 2022 Interstitial Cystitis (IC)/Painful bladder syndrome

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yes I have had this alot! February is coming up on 2 years of being off of celexa for me. For 1.5 years my main WD symptom was floaty boaty in motion dizziness and general dizziness. Thankfully since august it has been minimal! I do however still have these spells like you described from time to time as well. 

Current age - 29

 

At Ages 16- 20 Celexa 40 mg 

 

2014- September through February of 2016 ( 18 months) Celexa 20 mg

 

Tapered for Several months

 

Celexa free since February of 2016

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1 hour ago, Kalinia said:

yes I have had this alot! February is coming up on 2 years of being off of celexa for me. For 1.5 years my main WD symptom was floaty boaty in motion dizziness and general dizziness. Thankfully since august it has been minimal! I do however still have these spells like you described from time to time as well. 

 

Kalinia, I am so glad you are feeling better that is fantastic.  Did you do anything in particular to feel better?

10mg Lexapro: November 2014 - May 2016 (tapered over 4 weeks)

10mg Prozac: March 2017 - Current (currently tapering) 

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Nope! I think in just in a long window! Slowly healing! 

Current age - 29

 

At Ages 16- 20 Celexa 40 mg 

 

2014- September through February of 2016 ( 18 months) Celexa 20 mg

 

Tapered for Several months

 

Celexa free since February of 2016

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1 hour ago, Kalinia said:

Nope! I think in just in a long window! Slowly healing! 

Got it!  That's great!  How did you feel during your taper?  I am just beginning my taper and am already having bad dizziness and disorientation!  Its so discouraging to think I could have to suffer like this during the whole taper and then potentially after I am off as well!  

10mg Lexapro: November 2014 - May 2016 (tapered over 4 weeks)

10mg Prozac: March 2017 - Current (currently tapering) 

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I didn't feel anything tapering. My symptoms didn't start until 1.5 to 2 weeks off. 

 

I'm really sorry! Dizziness sucks! Maybe yours will go away really fast though!! 

Current age - 29

 

At Ages 16- 20 Celexa 40 mg 

 

2014- September through February of 2016 ( 18 months) Celexa 20 mg

 

Tapered for Several months

 

Celexa free since February of 2016

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  • 4 weeks later...
  • ChessieCat changed the title to Dizziness, vertigo, light-headedness etc & rocking/swaying/boat

I am on about 6 months of very very very very mild swaying/dizziness. So mild that I rarely think of it anymore except sometimes I get anxious in bed and can feel it slightly more, but I force myself not to think about it. 

 

I can finally sleep in a bed again! A window that I so can tolerate! Heaps better than last year. 

 

Are you seeing any improvement? 

Current age - 29

 

At Ages 16- 20 Celexa 40 mg 

 

2014- September through February of 2016 ( 18 months) Celexa 20 mg

 

Tapered for Several months

 

Celexa free since February of 2016

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5 hours ago, Kalinia said:

I am on about 6 months of very very very very mild swaying/dizziness. So mild that I rarely think of it anymore except sometimes I get anxious in bed and can feel it slightly more, but I force myself not to think about it. 

 

I can finally sleep in a bed again! A window that I so can tolerate! Heaps better than last year. 

 

Are you seeing any improvement? 

I was having milder rocking/swaying but I don’t know if that was me being calm and not paying much attention to them, or if it was genuinely a window.

 

its worse again now after a bit of an adverse reaction/anxious moment after eating a dinner. Body was pulsating like crazy afterwards and made the swaying worse since then. This really has no rhyme or reason to it. 

 

Im going to change career to become a driver. That way I can be at peace during the day with the rocking, swaying, as it goes away when in motion. However I’m fearful of the rebound when I get out. So I need to trial out an average day in journeys to see if I could live with the rebound. 

 

Does yours go away in motion and does it come back worse after being in a car? If so, how long does it stay worse for? Do you drive or take long journeys? 

 

I have heard people with MdDS (what my symptoms match mostly to) have had success with taking l-theanine, which is a plant based amino acid found in green tea.  It is a GABA agonist, and lowers glutamate. That would explain why people with MdDS is eased with use of Benzos or SSRI’s and would also explain why some get this horrible symptom set after coming off Benzo and ssri’s  too quickly.

 

There are some reports of MdDS following use or withdrawal from serotonergic medications. The connection here is that serotonin may inhibit glutamate, an excitatory transmitter in the vestibular nucleus (Smith and Darlington, 2010.). This idea also provides an explanation why serotonergic medications may help MdDS (see treatment section).”

https://www.dizziness-and-balance.com/disorders/central/mdd.html

 

Here is someone I found that over did it on green tea and found it out them into ‘remission’. I can’t remember where I got the quote from, but it’s strangely linking with our theory of withdrawal being due to glutamate toxicity. 

 

"I had this for the first time after a seven day ocean cruise. It lasted for quite a while and kept me from functioning properly. One day for lunch I went to an Asian restaurant and had several cups of green tea with my meal. After the meal I noticed I felt much better. It lasted about a day, so I drank more green tea to help with the symptoms... and it worked. I continued drinking several cups of green tea a day for a few weeks as my symptoms gradually subsided. They are completely gone now! I read that green tea helped rats with spatial awareness, not sure if that is it or not. All I know is my symptoms went from extremely debilitating, to the point where I could not concentrate on the task at hand, to being absolutely gone! It is an inexpensive thing to try... why not? Just a note I drank straight green tea, not mixed with other flavors or teas, with nothing else in it."

 

Its worth a try. I’ve also been in contact with another MdDS person on Facebook in remission who said she just tried Taurine and L-Theanine in high doses for 5 weeks and it slowly went. She has continued with this however, unlike the green tea drinker. 

 

If if you search for ‘theanine’ on this website, you’ll find a good lot of promising comments about it. It’s an amino acid, and not addictive, with no known upper limit of dosing. They dosed a rat with like 40g (it’s prescribed in 200mg usually) and it didn’t have any affect. It arrives Wednesday. 

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Oh interesting! Please keep me updated!!! 

 

My last wave was brought on after a long anxious car ride! 2 hours. 

 

I've been on hour. Or more rides lately  but havnt noticed an affect from it. 

Current age - 29

 

At Ages 16- 20 Celexa 40 mg 

 

2014- September through February of 2016 ( 18 months) Celexa 20 mg

 

Tapered for Several months

 

Celexa free since February of 2016

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2 minutes ago, Kalinia said:

Oh interesting! Please keep me updated!!! 

 

My last wave was brought on after a long anxious car ride! 2 hours. 

 

I've been on hour. Or more rides lately  but havnt noticed an affect from it. 

I will! I’m absolutely terrified of taking a supplement as I’ve reacted adversely to a lot of things that I really shouldn’t. However I’m reassured this is as tolerable as the magnesium I take. 

 

Can I ask what other symptoms you have other than the rocking/swaying? 

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I go through waves of anxiety but I've had that forever as well as occasional sleep issues. 

 

The one that stayed around a bit is pressure in my ears/eustachian tube dysfunction. Still better than last year thankfully! 

 

I just hit the two year mark of coming off! I think the supplement is worth trying! 

 

It sounds like you definitely were in a window! Same thing happened to me several times. 

 

I truly am hopeful that this will fully go away for us sometime. 

Current age - 29

 

At Ages 16- 20 Celexa 40 mg 

 

2014- September through February of 2016 ( 18 months) Celexa 20 mg

 

Tapered for Several months

 

Celexa free since February of 2016

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2 minutes ago, Kalinia said:

I go through waves of anxiety but I've had that forever as well as occasional sleep issues. 

 

The one that stayed around a bit is pressure in my ears/eustachian tube dysfunction. Still better than last year thankfully! 

 

I just hit the two year mark of coming off! I think the supplement is worth trying! 

 

It sounds like you definitely were in a window! Same thing happened to me several times. 

 

I truly am hopeful that this will fully go away for us sometime. 

Me too. I really really hope it’s withdrawal and it will all go away. I’ve seen people at 4 years who CT’d and have healed. So at least we’re half way there. I’m 2.5 years. 

 

Ive unfortunately came across some people who have this from SSRI’s and they have a long history of this. I’d rather not daunt on it. 

 

Do you find you have any triggers which make this worse for you? 

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Honestly this past 6 months not much has made it worse! Maybe slightly if my ears are more Full of pressure or I'm extra anxious and think about it coming back etc. But nothing for long or unbearable. 

 

This shows me that it's possible to heal. Even if I have waves again I know the possibility for long term windows or forever healing is possible! 

 

I believe the same for you, truly! 

Current age - 29

 

At Ages 16- 20 Celexa 40 mg 

 

2014- September through February of 2016 ( 18 months) Celexa 20 mg

 

Tapered for Several months

 

Celexa free since February of 2016

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2 minutes ago, Kalinia said:

Honestly this past 6 months not much has made it worse! Maybe slightly if my ears are more Full of pressure or I'm extra anxious and think about it coming back etc. But nothing for long or unbearable. 

 

This shows me that it's possible to heal. Even if I have waves again I know the possibility for long term windows or forever healing is possible! 

 

I believe the same for you, truly! 

Thank you so much. That means a lot.

 

I’ve been having intrusive thoughts about ending it all. It’s a major blockage on my life. I’ve been robbed of my youth. 

 

I don’t care if it takes another 2 years. Just as long as it goes away. 

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I've been there too! And then this 6 month window came and the hope was built up! Yours WILL go away! Keep looking for answers and help if you need it. You got this! 

Current age - 29

 

At Ages 16- 20 Celexa 40 mg 

 

2014- September through February of 2016 ( 18 months) Celexa 20 mg

 

Tapered for Several months

 

Celexa free since February of 2016

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24 minutes ago, Kalinia said:

I've been there too! And then this 6 month window came and the hope was built up! Yours WILL go away! Keep looking for answers and help if you need it. You got this! 

You’re amazing. Thank you! I too was optimistic for many weeks. It’s almost as if a dark cloud just comes over me once more. Perhaps this is a wave? I’m now totally pessimistic again. It’s hard to see the sun when there are so many dark clouds in the way. 

 

You’ve given that bit of encouragement to just keep on fighting for another while. Thank you. I wish you speedy recovery and please use this thread as an update! I want to hear someone come back and state they had this and now are healed 100%. There has yet to be one. 

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I will update! I know exactly how you feel. I sink down into darkness too. But the light will come. Again for you soon! 

Current age - 29

 

At Ages 16- 20 Celexa 40 mg 

 

2014- September through February of 2016 ( 18 months) Celexa 20 mg

 

Tapered for Several months

 

Celexa free since February of 2016

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Acta Otolaryngol. 2010 Sep;130(9):981-3. doi: 10.3109/00016481003602082.

A possible explanation for dizziness following SSRI discontinuation.

Source

ABSTRACT

Dizziness is the most commonly reported symptom of abrupt discontinuation from the selective serotonin reuptake inhibitor (SSRI) category of antidepressants. The reported dizziness is exacerbated by even slight head movement, and therefore is likely to be vestibular in origin. The SSRIs most implicated are those with short half-lives and which are most selective for serotonin (as opposed to noradrenaline), e.g. paroxetine and sertraline. Since the vestibular nucleus complex (VNC) has an abundance of serotonin receptors, the abrupt withdrawal from an SSRI is likely to have a substantial impact on the electrophysiological activity of neurons within it. Here we suggest that the abrupt withdrawal from an SSRI is likely to cause a sudden decrease in serotonin in the VNC, which will disrupt the function of VNC neurons bilaterally, causing dizziness without vertigo.

 

29y.o.  Started Lexapro, 15mg in 2013 for anxiety and depression.

9/28/15- Started taper, went down to 10mg, then 5mg by 10/31/15. 

1/2016-  anxiety, nausea, fatigue, crying spells, sadness, by January. Reinstated back to 10mg.  Leveled out.   1/1/2018- Began further taper, down to 0mg by 1/31/2018.  Last dose was 2.5mg. Feelings of dizziness during taper recommended by pdoc.  Slowed down taper, but still had symptoms of stomach upset.

2/12/18 - Dealing with symptoms of dizziness, anxiety, sadness, stomach upset.  2/20/18 - Reinstating medication with .6mg.  2/21/18 - Emotionally feeling better.  Dizziness much improved.  2/24/18 - Went to sleep with extreme feeling of chills.  No fever.  Fatigue.  3/19/18 - Increased anxiety.  5/1/18- Began therapy.  Have trouble with anxiety and GI symptoms.  9/22/18 - Decrease to .5mg.  Anxiety, GI, chills.  9/26/18 - back up to .6mg.  10/31/18 - app Curable, feeling distinct change in outlook and anxiety levels decreased.

2/1/19 - not seeing improvement in anxiety.  started 10mg Prozac  2/7/19 - up to 20mg Prozac, experiencing chills, tiredness  2/21/19 - tapering down to 10mg

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Update: I tried the L-Theanine, and it’s not really doing much, and it may actually be making me worse. I’m crying a lot and thinking suicidal thoughts. 

 

My mind is constantly ruminating and chewing on the possibility of this being something else and not withdrawal - however I don’t really care what it is, just as long as it goes away! 

 

I’m glad that I mentioned above that I’ve been doing worse BEFORE trying the L-theanine. Because that makes me realise I was going to get worse anyway. 

 

Ive trialled out my change of career and drove a lot for 4 hours or so, and my god... it made everything 10x worse. I’m bouncing again and the sea saw floor walking is back. Has anyone experienced this with long car journeys? 

 

Can I get a confirmation that people feel better in a car with this? Worse after a long journey? And when sitting still you feel your whole body is pulsating like you’re on a water raft or body? 

 

Kalina are you healed? 

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  • 1 month later...

Yes, I've been experiencing this since my last dose drop 2 weeks ago.

 

A sense of swaying, or my head swaying, dizziness................I can't be sure what sets it off either.

 

Feel like I'm going nuts.

Dose History: 19 Feb 2014 - Escitalopram 10mg daily June 2015 - Started taper, 5mg every other day July 2015 - 5mg every 2 days August 2015 - 5mg every 3 days September 2015 - 5mg every 4 days Sept 14th - Completed tapering, but at 7 weeks "drug free" I suffered serious WD symptoms as a consequence of "incorrect" tapering. Nov 25 2015 - Re-instated Cipralex @ 2.5mg daily. WD symptoms faded. Held at this dose and experienced "windows and waves". 12 Oct 2017 Reduced dose to 1.25mg. 13 Mar 2018 Reduced dose to 0.625mg (approx.). 16 April 2018 0mg. Windows and waves triggered by stress (IBS/reflux, headaches, sinus issues) Aug 2019 Mirena coil fitted 6 Jan 2020 MAJOR Wave hit 19 months following last dose (protracted WD).  Symptoms listed below Mar 2020 Mirena coil removal.

Therapy: Nov 15th 2016 Re-started therapy Jan 19th 2017 Started CBT Dec 2017 Started listening to Hypnotherapy CD (self-esteem). Nov 2019 Started couples therapy.

Supplements: "Bioglan" Biotic Balance Ultimate Flora 10 billion CFU, live Bacteria, Probiotic, suitable for Vegetarians, with Lactobacillus Acidophilus, Lactobacillus Rhamnosus, Bifidobacterium Longum"Pukka" Vitalise a unique blend of 30 energising botanicals.

Diet: 16 April 2018 Detox cleanse / anti-candida for 90 days. Jan 2020 Started "small plate" diet (i.e child size portions).

Exercise: Stretching, Yoga, Pilates, Spinning, Elliptical/upper body workout, walking.

Medical Test Results: 4 Jan 2017 Homeopathic Treatment starts 24 Feb 2017 Started weight loss program 24 Mar 2017 Naturopathic Treatment + anti-Candida diet started due to suspected Candida Related Complex (CRC). DETOXED for 7 weeks to "re-set" gut. April 2017 "Genova Diagnostics" Comprehensive Stool Analysis NEGATIVE; Full Blood Count (Normal) / Blood Cholesterol: 5.6 (Borderline) / Blood Sugar (Normal) / 28 Jun 2017 FSH 8.2 / 14 Nov 2017 FSH 17.7 Dec 2017 Blood Cholesterol: 3.9 (Normal) / Kidney Function (Normal) / Blood Sugar (Normal). December 2017 "Genova Diagnostics" Food panel allergy (bloodwork) analysis - a few "VERY LOW/VL" allergens; Mar 2018 "Genova Diagnostics" SIBO urine analysis: High Level of Yeast/fungal markers found in small intestine but NO SIBO.  April 2018 Thyroid (Normal) / Full Blood Count (Normal) / FSH (Normal). 16 April 2018 Started anti-Candida diet - 3 month protocol.   25 March 2020 All test results "Normal". CRP" 5 mg/L (normal range to 0-5 mg/L).

Symptoms:  Flu-like symptoms, anxiety, anhedonia, sinus headaches right-side (severe), IBS issues/reflux (severe)**, tinnitus, fatigue, inner tremor, nausea, chills/hot flushes, pounding heart, muscular issues including stiff left hip flexor, intense anger, PSSD (ongoing).  **Histhamine intolerance (suspected).

Major Life Events: 

Re-located to UK from Canada: Jan 2016

My father died: 5:05pm, Monday 5 Feb 2018 Last Lexapro dose: 16 April 2018 (its now been over a year since I quit ADs)  Moved house: Friday 23rd February 2018  "Divorced" toxic Mother: Monday 26 March 2018 Starting working again: 19 November 2018  Diagnosed with: 5th August 2021 PTSD/C-PTSD Diagnosed with: March 2022 Interstitial Cystitis (IC)/Painful bladder syndrome

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1 hour ago, Junglechicken said:

Yes, I've been experiencing this since my last dose drop 2 weeks ago.

 

A sense of swaying, or my head swaying, dizziness................I can't be sure what sets it off either.

 

Feel like I'm going nuts.

I really feel sorry for you. This is hell. This symptom is probably the most debilitating and difficult to ignore. 

 

What drug have you reduced and what other symptoms do you have? 

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Hi Irish,

 

The last drop I did was a big one (50%) of Lexapro, 2 weeks ago.

 

Yes, I get the swaying, dizziness, heavy head, weakness in the legs, and GERD.

Dose History: 19 Feb 2014 - Escitalopram 10mg daily June 2015 - Started taper, 5mg every other day July 2015 - 5mg every 2 days August 2015 - 5mg every 3 days September 2015 - 5mg every 4 days Sept 14th - Completed tapering, but at 7 weeks "drug free" I suffered serious WD symptoms as a consequence of "incorrect" tapering. Nov 25 2015 - Re-instated Cipralex @ 2.5mg daily. WD symptoms faded. Held at this dose and experienced "windows and waves". 12 Oct 2017 Reduced dose to 1.25mg. 13 Mar 2018 Reduced dose to 0.625mg (approx.). 16 April 2018 0mg. Windows and waves triggered by stress (IBS/reflux, headaches, sinus issues) Aug 2019 Mirena coil fitted 6 Jan 2020 MAJOR Wave hit 19 months following last dose (protracted WD).  Symptoms listed below Mar 2020 Mirena coil removal.

Therapy: Nov 15th 2016 Re-started therapy Jan 19th 2017 Started CBT Dec 2017 Started listening to Hypnotherapy CD (self-esteem). Nov 2019 Started couples therapy.

Supplements: "Bioglan" Biotic Balance Ultimate Flora 10 billion CFU, live Bacteria, Probiotic, suitable for Vegetarians, with Lactobacillus Acidophilus, Lactobacillus Rhamnosus, Bifidobacterium Longum"Pukka" Vitalise a unique blend of 30 energising botanicals.

Diet: 16 April 2018 Detox cleanse / anti-candida for 90 days. Jan 2020 Started "small plate" diet (i.e child size portions).

Exercise: Stretching, Yoga, Pilates, Spinning, Elliptical/upper body workout, walking.

Medical Test Results: 4 Jan 2017 Homeopathic Treatment starts 24 Feb 2017 Started weight loss program 24 Mar 2017 Naturopathic Treatment + anti-Candida diet started due to suspected Candida Related Complex (CRC). DETOXED for 7 weeks to "re-set" gut. April 2017 "Genova Diagnostics" Comprehensive Stool Analysis NEGATIVE; Full Blood Count (Normal) / Blood Cholesterol: 5.6 (Borderline) / Blood Sugar (Normal) / 28 Jun 2017 FSH 8.2 / 14 Nov 2017 FSH 17.7 Dec 2017 Blood Cholesterol: 3.9 (Normal) / Kidney Function (Normal) / Blood Sugar (Normal). December 2017 "Genova Diagnostics" Food panel allergy (bloodwork) analysis - a few "VERY LOW/VL" allergens; Mar 2018 "Genova Diagnostics" SIBO urine analysis: High Level of Yeast/fungal markers found in small intestine but NO SIBO.  April 2018 Thyroid (Normal) / Full Blood Count (Normal) / FSH (Normal). 16 April 2018 Started anti-Candida diet - 3 month protocol.   25 March 2020 All test results "Normal". CRP" 5 mg/L (normal range to 0-5 mg/L).

Symptoms:  Flu-like symptoms, anxiety, anhedonia, sinus headaches right-side (severe), IBS issues/reflux (severe)**, tinnitus, fatigue, inner tremor, nausea, chills/hot flushes, pounding heart, muscular issues including stiff left hip flexor, intense anger, PSSD (ongoing).  **Histhamine intolerance (suspected).

Major Life Events: 

Re-located to UK from Canada: Jan 2016

My father died: 5:05pm, Monday 5 Feb 2018 Last Lexapro dose: 16 April 2018 (its now been over a year since I quit ADs)  Moved house: Friday 23rd February 2018  "Divorced" toxic Mother: Monday 26 March 2018 Starting working again: 19 November 2018  Diagnosed with: 5th August 2021 PTSD/C-PTSD Diagnosed with: March 2022 Interstitial Cystitis (IC)/Painful bladder syndrome

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6 minutes ago, IrishMonkey92 said:

This symptom is probably the most debilitating and difficult to ignore. 

 

IrishMonkey,

 

I am suffering with dizziness for quite some time so I can empathize and feel qualified to comment.  It sucks.  It is horrible.  It is very annoying.  However, we do ourselves no favors when we use terms like "most" and "worst" when we describe what is happening to us.  I'm fairly confident that those who have akathisia think their symptom is the "worst" and it's hard to doubt that those with suicidal ideation can lay a strong claim to that mantle.  The more we catastrophize about any particular symptom the more we allow it to weigh on our minds.  Since we know it is from the withdrawal and the reaction the body is having, and therefore we know it's not "dangerous", we need to do our best to change our thoughts when it hits and accept it for what it is -- a temporary (albeit for some a long time temporary) annoyance.

 

Because the sense of balance is such a fundamental sense for humans, the feeling that we are losing or have lost the ability to balance ourselves and know where we are in space is intrinsically frightening so it is logical that we will experience a lot of "first fear" when it hits.  Learning how to talk ourselves down and not allow that first fear to spiral into a lot of second fear of "what if it's MS" or "what if it's a brain tumor" will go a long way toward allowing us to calm down our CNS and move past the fear of the symptom.

 

Not easy and I'm hardly suggesting I've mastered it, but something to aspire to.

 

Best,

 

Andy 

Sertraline 50mg and Clonazapam .375mg from 2000 -- symptoms of dizziness Spring 2012

increased to .5 Clonazapam and 100mg Sertraline -- no improvement

Benzo microtaper from November 2012 to November 2014 (followed benzo sites "taper benzo first")

Started Sertraline taper in December 2014 cut by 25mg to 75mg; 62.5mg 1/1/15 and 50mg on 2/1/15

Held at 50mg through April 5 to use liquid 
Reduced dosage in 10% or less drops from 50mg to 25mg -- at single tablet of 25mg on 10/5/15

Transitioned to all liquid for accuracy while tapering -- Horrible insomnia -- back to 25mg liquid and held until October 1, 2016

10/16 -- 11/18 tapered very slowly to 10.6mg.  No real improvement and never really stable so updosed to 12.5mg (1/2 a pill) for convenience and long hold.

After 8+ months of holding with no noticeable improvement decided to add .4ml of liquid Prozac (about 1.5mg) to see if that improves the situation

Supplements, Magnesium, D3, Omega 3, curcumin, Valerian, 81mg Aspirin, L-Theanine, Vit. C,

 

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7 minutes ago, apace41 said:

 

IrishMonkey,

 

I am suffering with dizziness for quite some time so I can empathize and feel qualified to comment.  It sucks.  It is horrible.  It is very annoying.  However, we do ourselves no favors when we use terms like "most" and "worst" when we describe what is happening to us.  I'm fairly confident that those who have akathisia think their symptom is the "worst" and it's hard to doubt that those with suicidal ideation can lay a strong claim to that mantle.  The more we catastrophize about any particular symptom the more we allow it to weigh on our minds.  Since we know it is from the withdrawal and the reaction the body is having, and therefore we know it's not "dangerous", we need to do our best to change our thoughts when it hits and accept it for what it is -- a temporary (albeit for some a long time temporary) annoyance.

 

Because the sense of balance is such a fundamental sense for humans, the feeling that we are losing or have lost the ability to balance ourselves and know where we are in space is intrinsically frightening so it is logical that we will experience a lot of "first fear" when it hits.  Learning how to talk ourselves down and not allow that first fear to spiral into a lot of second fear of "what if it's MS" or "what if it's a brain tumor" will go a long way toward allowing us to calm down our CNS and move past the fear of the symptom.

 

Not easy and I'm hardly suggesting I've mastered it, but something to aspire to.

 

Best,

 

Andy 

Hi Andy. 

 

Thanks for the knowledge.

 

I’ve had this nearly 3 years. I’m long passed the stage of first fear. It’s just an annoyance and hindrance to me now. I don’t fear it. I’ve felt it at a 10 and that’s fearing but I’m normally at a 1/2 most days. My balance is perfect. However this goes away in the car and gets worse after travel. So it’s hard to differentiate from Mal De Debarquement Syndrome. 

 

I’ve been to the point of suicide with it, just because it’s gone on so long. I’m sure those with Akathisia have been in similar situations. 

 

Thanks, 

irish 

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1 minute ago, IrishMonkey92 said:

I’ve had this nearly 3 years. I’m long passed the stage of first fear. It’s just an annoyance and hindrance to me now. I don’t fear it. I’ve felt it at a 10 and that’s fearing but I’m normally at a 1/2 most days. My balance is perfect. However this goes away in the car and gets worse after travel. So it’s hard to differentiate from Mal De Debarquement Syndrome. 

 

I’ve been to the point of suicide with it, just because it’s gone on so long. I’m sure those with Akathisia have been in similar situations. 

 

I'm so sorry to hear that, IM.  I hope you don't think I was speaking down to you about a condition you already know a ton about.  I have not read your thread so I didn't know your history.  

 

There are plenty of stories of people in the withdrawal and anxiety contexts who have seen this symptom last for longer than yours has and finally saw it lift and get better.  I know that it is hard to believe that.  My dizziness started recurring in 2012 and while it has not been 24/7 until fairly recently, I know how it feels to deal with it for a very long time.

 

I would only say that while you may no longer consciously fear the symptom when it hits, it is highly likely that your system reacts on a subconscious, hardwired basis.  Time and relaxation will hopefully see that fade completely for you.

 

I hope I didn't offend.

 

Best,

 

Andy

Sertraline 50mg and Clonazapam .375mg from 2000 -- symptoms of dizziness Spring 2012

increased to .5 Clonazapam and 100mg Sertraline -- no improvement

Benzo microtaper from November 2012 to November 2014 (followed benzo sites "taper benzo first")

Started Sertraline taper in December 2014 cut by 25mg to 75mg; 62.5mg 1/1/15 and 50mg on 2/1/15

Held at 50mg through April 5 to use liquid 
Reduced dosage in 10% or less drops from 50mg to 25mg -- at single tablet of 25mg on 10/5/15

Transitioned to all liquid for accuracy while tapering -- Horrible insomnia -- back to 25mg liquid and held until October 1, 2016

10/16 -- 11/18 tapered very slowly to 10.6mg.  No real improvement and never really stable so updosed to 12.5mg (1/2 a pill) for convenience and long hold.

After 8+ months of holding with no noticeable improvement decided to add .4ml of liquid Prozac (about 1.5mg) to see if that improves the situation

Supplements, Magnesium, D3, Omega 3, curcumin, Valerian, 81mg Aspirin, L-Theanine, Vit. C,

 

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1 minute ago, apace41 said:

 

I'm so sorry to hear that, IM.  I hope you don't think I was speaking down to you about a condition you already know a ton about.  I have not read your thread so I didn't know your history.  

 

There are plenty of stories of people in the withdrawal and anxiety contexts who have seen this symptom last for longer than yours has and finally saw it lift and get better.  I know that it is hard to believe that.  My dizziness started recurring in 2012 and while it has not been 24/7 until fairly recently, I know how it feels to deal with it for a very long time.

 

I would only say that while you may no longer consciously fear the symptom when it hits, it is highly likely that your system reacts on a subconscious, hardwired basis.  Time and relaxation will hopefully see that fade completely for you.

 

I hope I didn't offend.

 

Best,

 

Andy

No no not at all! 

 

You are probably right. It’s just frustrating having a limited life at such a young age. 

 

Is your dizziness of the swaying kind? Have you had it from anxiety/withdrawal? 

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3 hours ago, IrishMonkey92 said:

It’s just frustrating having a limited life at such a young age. 

 

God willing it will disappear over time.  The good news about being young is you still have a lot of life left to live after you fully heal.  And you will.

 

3 hours ago, IrishMonkey92 said:

Is your dizziness of the swaying kind? Have you had it from anxiety/withdrawal? 

 

It's one of those things that is hard to define. I think it is probably the same thing but you tell me -- it's the feeling of being unsteady, off, walking on a trampoline, like you are on a boat, feeling like you are on a moonbounce; etc.  That rocking discomfort is what gets one into the mal de debarquement category when you start doing the research.  I know -- I've been diagnosed with that at one time, vestibular migraine at another, and so on and so on.  

 

Assuming that is the case, you should look at anxietycentre.com and see their discussion of anxiety and how the system gets "hyperstimulated" and then locked in fight or flight and the resulting dizziness.  Sounds JUST like what is described by people who are in withdrawal.  My hypothesis on all of this is that drugs and withdrawal from the drugs results in hyperstimulation and a frozen limbic system.  You can't get out of fight or flight and the body pumps our stress hormones, primarily cortisol, without regard to any "real" threats.  If this resonates with you let's talk more.

 

Best,

 

Andy

Sertraline 50mg and Clonazapam .375mg from 2000 -- symptoms of dizziness Spring 2012

increased to .5 Clonazapam and 100mg Sertraline -- no improvement

Benzo microtaper from November 2012 to November 2014 (followed benzo sites "taper benzo first")

Started Sertraline taper in December 2014 cut by 25mg to 75mg; 62.5mg 1/1/15 and 50mg on 2/1/15

Held at 50mg through April 5 to use liquid 
Reduced dosage in 10% or less drops from 50mg to 25mg -- at single tablet of 25mg on 10/5/15

Transitioned to all liquid for accuracy while tapering -- Horrible insomnia -- back to 25mg liquid and held until October 1, 2016

10/16 -- 11/18 tapered very slowly to 10.6mg.  No real improvement and never really stable so updosed to 12.5mg (1/2 a pill) for convenience and long hold.

After 8+ months of holding with no noticeable improvement decided to add .4ml of liquid Prozac (about 1.5mg) to see if that improves the situation

Supplements, Magnesium, D3, Omega 3, curcumin, Valerian, 81mg Aspirin, L-Theanine, Vit. C,

 

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49 minutes ago, apace41 said:

 

God willing it will disappear over time.  The good news about being young is you still have a lot of life left to live after you fully heal.  And you will.

 

 

It's one of those things that is hard to define. I think it is probably the same thing but you tell me -- it's the feeling of being unsteady, off, walking on a trampoline, like you are on a boat, feeling like you are on a moonbounce; etc.  That rocking discomfort is what gets one into the mal de debarquement category when you start doing the research.  I know -- I've been diagnosed with that at one time, vestibular migraine at another, and so on and so on.  

 

Assuming that is the case, you should look at anxietycentre.com and see their discussion of anxiety and how the system gets "hyperstimulated" and then locked in fight or flight and the resulting dizziness.  Sounds JUST like what is described by people who are in withdrawal.  My hypothesis on all of this is that drugs and withdrawal from the drugs results in hyperstimulation and a frozen limbic system.  You can't get out of fight or flight and the body pumps our stress hormones, primarily cortisol, without regard to any "real" threats.  If this resonates with you let's talk more.

 

Best,

 

Andy

It does. PM me 

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  • 1 month later...

I’m a 22 year old male with these symptoms, been having them for years (ever since freshman year of High School). Once I started having panic attacks around that time, stressful situations triggered this sensation. I also had a lot of brain fog / derealization. Anyone else have derealization with this sensation? All of these symptoms of course cause a lot of anxiety. My anxiety got so bad to the point in freshman year of college I had to be put on an SSRI, escitalopram. I’m happy to say the dizziness subsided almost 100% and so did my anxiety. I’m currently in the process of weaning myself off the medication, but the withdrawal has been horrendous. Kind of a double-edged sword unfortunately. The medication helped so much, but it’s so hard to get off of once you feel you can manage your anxiety on your own.

 

 

I was off only for 10 days and now I reinstated half the dose I was at and all the dizzy symptoms have returned, but worse than before. Waiting to stabilize and see if I can either go back up to the same dosage, or if my nervous system is hypersensitive enough where I just have to get off it now. Not look forward to either approach, anybody who has maybe gone through something similar I’m all ears.

 

Evan

Lexapro 10 MG 3 years on (Begin Summer 2014)

3 months taper duration (Begin taper Jan. 2018, end late March 2018.)

Reinstated 1MG liquid on April 9, 2018

Upped dose to 2.5 mg (2.5 ML) on April 12, 2018

Upped dose to 4mg on April 16, 2018

Upped dose to 5mg tablets on May 1, 2018

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2 hours ago, Bonzee said:

I’m a 22 year old male with these symptoms, been having them for years (ever since freshman year of High School). Once I started having panic attacks around that time, stressful situations triggered this sensation. I also had a lot of brain fog / derealization. Anyone else have derealization with this sensation? All of these symptoms of course cause a lot of anxiety. My anxiety got so bad to the point in freshman year of college I had to be put on an SSRI, escitalopram. I’m happy to say the dizziness subsided almost 100% and so did my anxiety. I’m currently in the process of weaning myself off the medication, but the withdrawal has been horrendous. Kind of a double-edged sword unfortunately. The medication helped so much, but it’s so hard to get off of once you feel you can manage your anxiety on your own.

 

 

I was off only for 10 days and now I reinstated half the dose I was at and all the dizzy symptoms have returned, but worse than before. Waiting to stabilize and see if I can either go back up to the same dosage, or if my nervous system is hypersensitive enough where I just have to get off it now. Not look forward to either approach, anybody who has maybe gone through something similar I’m all ears.

 

Evan

What type of dizziness are you getting? 

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1 hour ago, IrishMonkey92 said:

What type of dizziness are you getting? 

 

When I was younger before the medication I had the leveling off elevator that people describe. After that in college and now after the medication WD I have like the "floaty boat" feeling, which is made worse by head movement. I also have presumably low BP when changing positions (mostly from lying down to standing). I never had these while on the medication.

 

The low BP and floaty boat could be perceived as lightheadedness, but lightheadedness made worse with head movement is most likely vestibular in origin from what I've read...

Lexapro 10 MG 3 years on (Begin Summer 2014)

3 months taper duration (Begin taper Jan. 2018, end late March 2018.)

Reinstated 1MG liquid on April 9, 2018

Upped dose to 2.5 mg (2.5 ML) on April 12, 2018

Upped dose to 4mg on April 16, 2018

Upped dose to 5mg tablets on May 1, 2018

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