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Blog: My akathisia experience by akathisiainfo


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I too am suffering from the akathisia, and I also have joined the new forum.  Hopefully it will be of some help.  Like others, I have suffered paradoxical reactions to supplements. Interestingly enough, I seem OK with the ones I was taking before the akathisia started, but seem to be unable to tolerate anything new.  Although my akathisia is constant to some degree, the intensity seems to vary, and it seems like my worst bouts with it are coming every 2 or 3 days now.  Time will tell if it is improving.  I may just be tolerating it better.  I am keeping a journal, however.  Not sure I can tell at this point :(  i do seem to be fairly stable now in terms of supplements i have already been taking, and managing to keep myself from being tempted to try anything different.

Zoloft 100 mg. daily for Chronic Fatigue Syndrome since Oct. 1994 / Synthroid 88 mcg. daily / Supplements: Neptune Krill Oil-1,000 mg. twice daily/Astaxanthin 10 mg. twice daily/Ubiquinol 100 mg. twice daily (These 3 have allowed me to discontinue (approved by doctor) bp meds I was on. Calcium Citrate 500 mg. daily/Vitamin D3 2,400 iu daily/K2 (MK7) 100 mcg daily (osteopenia and fam. hist. of severe osteoporosis). Stress B Complex (1/2 dose)/Quercetin (for allergies/asthma)/Magnesium (400 mg. oral glycinate and about 50 mg. magnesium chloride spray oil a day, divided throughout day).

Tapered Zoloft about 6 wks. Totally off since the end of July (25-29, 2014). 3 wks. vertigo at end of taper, then 3-4 wks. OK, followed by withdrawal symptoms increasing in severity (nausea, gastric disturbances, loss of appetite, insomnia, restlessness, jitters, anxiety, agitation--jumping out of my skin--possible akathisia?) Seem to have paradoxical reactions to everything new, even Vitamin C. Severity of akathisia comes and goes, but is constant to some degree. Hard to leave house, and cannot be home alone. (Retired)

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  • 7 months later...
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Faithbarelysurviving

It's so much deeper than anxiety and depression. It's a feeling of terror beyond anything anyone can imagine. A feeling of darkness and terror residing inside your body that makes you need to move your limbs over and over and over. Keeping still is incredibly hard. It's a feeling of screaming from within. It makes you want to scream and scream and scream. You'd do just about anything to make it stop but you can't. You just have to live with it. You feel like there's something in your body that you want to remove. It's accompanied unimaginable feelings of doom and darkness. Like a feeling of demons being drilled into your head. It's like the feeling you get waking up from a nightmare multiplied by 10. Adrenaline lives in your hands and in your legs. It washes over your whole body all day everyday. It's unthinkable.

 

"Like a feeling of demons drilled into your head."

so true !!! It makes you crazy literally

Please have patience and read : a great Mental Health Care System indeed/Never been hospitalized prior to starting meds

-Not sure all is accurate:2005 Diag. with major depression and anxiety after second birth

-switched AD,getting worse (maybe:Celexa, Effexor, Wellbutrin-diagnosed with bp

-Zyprexa, stopped it fast, got hosp.,Seroquel incr. at 300mg, wors. depr, akathisia bad,

-changed dr.,dropped Seroquel 300mg to 100mg !!!-

-new dr.got me off Seroquel in 1 mth at home!!Lamictal to help...getting worse,was also taking Clonazepam

-severe muscle twiches, dp/dr,neck and shoulder muscles tight straight like cement, psychotic, bedridden for 1yr

-Got put on Zoloft in the hosp.,and 3 mg of Clonazepam, "Stabilized" some after some months, 5-6,

-Came off Zoloft by dropping some weekly, not knowing better!debilitating symptoms, got back on, tried to reduce Clonazepam after research.Prof. Ashton; hosp., asked dr. to follow Dr Ashton, he dropped 3 mg Clon. in One day!put on much less Valium...hysterical,pain,rage,couldn t breathe,akathisia etc etc

-Zoloft up to 200mg!, hyperv. muscles tight like cement...my dr., on vacation!!Other dr red.zoloft, gave me Remeron

Current meds:Buspirone 20mg,Tegretol200mg,Trazadone 50 mg,Clonaz. 3mg,Escital.15mg,Propran.20mg,Bupropr.150mg,Baclofen30mg,Gabapentin200mg, taken 4 times/day in various comb

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The last couple of years on Zoloft, I had a few weeklong occurrences of physical akathisia. I thought it was low potassium, until I had full-blown physical and psychological akathisia after going off much too fast (6 weeks--basically cold turkey). I still have constant akathisia 10+ months later. This was after being on for 20 years for Chronic Fatigue Syndrome.

Zoloft 100 mg. daily for Chronic Fatigue Syndrome since Oct. 1994 / Synthroid 88 mcg. daily / Supplements: Neptune Krill Oil-1,000 mg. twice daily/Astaxanthin 10 mg. twice daily/Ubiquinol 100 mg. twice daily (These 3 have allowed me to discontinue (approved by doctor) bp meds I was on. Calcium Citrate 500 mg. daily/Vitamin D3 2,400 iu daily/K2 (MK7) 100 mcg daily (osteopenia and fam. hist. of severe osteoporosis). Stress B Complex (1/2 dose)/Quercetin (for allergies/asthma)/Magnesium (400 mg. oral glycinate and about 50 mg. magnesium chloride spray oil a day, divided throughout day).

Tapered Zoloft about 6 wks. Totally off since the end of July (25-29, 2014). 3 wks. vertigo at end of taper, then 3-4 wks. OK, followed by withdrawal symptoms increasing in severity (nausea, gastric disturbances, loss of appetite, insomnia, restlessness, jitters, anxiety, agitation--jumping out of my skin--possible akathisia?) Seem to have paradoxical reactions to everything new, even Vitamin C. Severity of akathisia comes and goes, but is constant to some degree. Hard to leave house, and cannot be home alone. (Retired)

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Just read the OP and the blog it links to. Oh my. I was given compazine at the age of 14 for nausea (if memory serves, it was prescribed by the family doctor, who actually made a house call). After one dose I had a full-blown extrapyramidal reaction: my eyes rolled up to the ceiling (ocylogyric crisis), I became highly agitated physically and mentally, as though on a bad trip (akathisia), I had jerking and spasms (dystonia), and my tongue protruded out of my mouth. The joke (no joke, I know), is that the only one home at the time for me to call for help was my sister "THOO-THAN!" (Susan). She phoned an uncle who worked selling pharmaceuticals, and he advised her to give me benadryl. Luckily, luckily, luckily the symptoms abated. Needless to say, compazine has been at the top of my every medical chart as a "do not give ever under any circumstance." That experience began a lifetime of drug sensitivity (I used to joke that if someone in the next apartment took a drug, I would get the side effects.) I was always so cautious about anything I took. And yet here I am.

1990 - mid-2000s: on and off several ADs, including Prozac, Effexor, Celexa, and Wellbutrin. Many side-effects and hard withdrawals. 

1990 - mid-2000s: Klonopin 0.5 mg per day prn for sleep & anxiety.

mid-2000s - 2011: switched dosing to Klonopin 0.25 twice-daily for the above plus back pain (!) Never increased dose.

2011 - began taper with missteps; then @ 5% of current dose every 2 wks, using combo of pill and compounded liquid.

2012: yearlong hold at 0.165 bid to undergo specialized PT for pelvic floor syndrome, prob triggered by high muscle tone from taper.

2013: resumed taper @ 5% of current dose per month, from 0.165 down to 0.155 bid.

3/2013 - 6/2014: another year+ hold due to bad foot fracture & family trauma (sudden deaths).

6/2014 - 1/2015: resumed taper at 5% month; from 0.155 down to 0.125 bid (half original dose; or 1/4 of 0.5 tab). Held two months.

3/2015: Started 0.125 compounded tablets pure clonazepam, twice a day.

Supplements: fish oil, probiotics, cranberry, Vit C, Vit D, turmeric, magnesium powder, tablets, oil. Also occasional baby aspirin.

Exquisitely sensitive to meds. Working full time. In my late fifties. My intro thread:

http://survivingantidepressants.org/index.php?/topic/8733-brighids-intro-my-slow-mo-clonazepam-taper-hits-a-speed-bump/?p=145214

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Brighid, I reacted to Compazine years and years ago too. It was somewhat different to my WD akathisia experience. Don't know much about dystonia, but I want to say it was probably more like that. Scary nevertheless!!

Zoloft 100 mg. daily for Chronic Fatigue Syndrome since Oct. 1994 / Synthroid 88 mcg. daily / Supplements: Neptune Krill Oil-1,000 mg. twice daily/Astaxanthin 10 mg. twice daily/Ubiquinol 100 mg. twice daily (These 3 have allowed me to discontinue (approved by doctor) bp meds I was on. Calcium Citrate 500 mg. daily/Vitamin D3 2,400 iu daily/K2 (MK7) 100 mcg daily (osteopenia and fam. hist. of severe osteoporosis). Stress B Complex (1/2 dose)/Quercetin (for allergies/asthma)/Magnesium (400 mg. oral glycinate and about 50 mg. magnesium chloride spray oil a day, divided throughout day).

Tapered Zoloft about 6 wks. Totally off since the end of July (25-29, 2014). 3 wks. vertigo at end of taper, then 3-4 wks. OK, followed by withdrawal symptoms increasing in severity (nausea, gastric disturbances, loss of appetite, insomnia, restlessness, jitters, anxiety, agitation--jumping out of my skin--possible akathisia?) Seem to have paradoxical reactions to everything new, even Vitamin C. Severity of akathisia comes and goes, but is constant to some degree. Hard to leave house, and cannot be home alone. (Retired)

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Brighid, I reacted to Compazine years and years ago too. It was somewhat different to my WD akathisia experience. Don't know much about dystonia, but I want to say it was probably more like that. Scary nevertheless!!

 

Scary indeed. I'm sorry you had that experience, and especially sorry for your more recent struggles. I wonder if there's a connection--i.e., that those who are likely to have a compazine reaction are also likely to have complicated withdrawals, and vice-versa.

1990 - mid-2000s: on and off several ADs, including Prozac, Effexor, Celexa, and Wellbutrin. Many side-effects and hard withdrawals. 

1990 - mid-2000s: Klonopin 0.5 mg per day prn for sleep & anxiety.

mid-2000s - 2011: switched dosing to Klonopin 0.25 twice-daily for the above plus back pain (!) Never increased dose.

2011 - began taper with missteps; then @ 5% of current dose every 2 wks, using combo of pill and compounded liquid.

2012: yearlong hold at 0.165 bid to undergo specialized PT for pelvic floor syndrome, prob triggered by high muscle tone from taper.

2013: resumed taper @ 5% of current dose per month, from 0.165 down to 0.155 bid.

3/2013 - 6/2014: another year+ hold due to bad foot fracture & family trauma (sudden deaths).

6/2014 - 1/2015: resumed taper at 5% month; from 0.155 down to 0.125 bid (half original dose; or 1/4 of 0.5 tab). Held two months.

3/2015: Started 0.125 compounded tablets pure clonazepam, twice a day.

Supplements: fish oil, probiotics, cranberry, Vit C, Vit D, turmeric, magnesium powder, tablets, oil. Also occasional baby aspirin.

Exquisitely sensitive to meds. Working full time. In my late fifties. My intro thread:

http://survivingantidepressants.org/index.php?/topic/8733-brighids-intro-my-slow-mo-clonazepam-taper-hits-a-speed-bump/?p=145214

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  • 4 months later...

From my experience, this is not a permanent condition - however subsequent exposure to drugs can cause anesthesia that has healed to come back in full force, or WORSE.  It appears that at least in my own body, it was able to recover from most of the effects of this side effect, HOWEVER something has fundamentally changed with my nervous system and when I tried some recreational drugs (smoked a bit too much pot) it all came back and has now been about 18 months since that time.  In those 18 months, it has again begun to  resolve itself - BUT I know that if I take a drug or am not careful about what I eat it can come back again.

 

I think it's very important for us to understand that there may be fundamental changes in our nervous systems that make us strongly predisposed to getting akasthesia again if we are not careful about what we put inside of our bodies.  The assumption that once this side effect goes away, it's gone and we're back to "normal" is incorrect.  In my case, I was certainly on my way to being healed, but I may very well never be "normal" again - just functional and mostly recovered. 

 

Please be careful folks, healing does take place but the nervous system is no longer capable of handling substantial stressors and tests like it used to.

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The link to the akathisia forum is not working. Is the forum down or has it moved to a new address?

I suffer from depression, anxiety, pure-o ocd, and panic attacks since 2004. Been on multiple different psychiatric drugs since 2006. Never had a significant WD problem before, only brain zaps for a month and then I'd be fine...............Been on Cipralex (escitalopram) 15 mg and Fluanxol (flupentixol) 1 mg since Sep 2014. Stopped taking the Cipralex after a fast 20-day taper.Took the last 5 mg Cipralex on Feb 5th, 2015. Then took Seroxat (paroxetine) 10 mg for a week, and stopped it too. Severe WD started suddenly on Feb 16th. RI 5 mg Cipralex on Feb 18th, 2015. RI worked and was relatively stable for a while................April 7 - decreased Fluanxol from 1 mg to 0.5 mg and took it at this dose for a week. - BIG MISTAKE; April 13 - WD starts creeping in; April 14 - RI full dose of Fluanxol 1 mg => severe muscle twitching and jerking when trying to relax and fall asleep, overwhelming sense of doom, dread, terror, and horror, insomnia, hoping to stabilize.
Tried doing a 10% cut off Fluanxol in the end of May for a few days, but quickly updosed to full dose because the twitching returned.
Experiencing waves and windows in the following months.
Unsuccessful brief taper attempt of Fluanxol by 5% on November 1st. Symptoms hit the next day. Too scared to continue tapering, reinstate full dose.
Severe crash in November after stupidly trying a barbiturate on November 9th. Grave mistake. Sense of unshakable inescapable internal torture, like my soul is in hell being tortured, terror/horror/dread/doom (probably akathisia?) that gets especially bad when trying to relax and fall asleep, muscles twitch, jerk and move on their own, shaking, insomnia, can't eat, confusion, disorientation, brain not working normally. Never felt so bad in my entire life. Never experiment with other meds while in WD! Praying to God I stabilize and get back to my baseline.
December - things getting even worse.

January - unbearable suffering

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Hmmm... It says closed June 10, 2015 due to inactivity. Granted, I have not been on in a while, but had been meaning to check in...

Zoloft 100 mg. daily for Chronic Fatigue Syndrome since Oct. 1994 / Synthroid 88 mcg. daily / Supplements: Neptune Krill Oil-1,000 mg. twice daily/Astaxanthin 10 mg. twice daily/Ubiquinol 100 mg. twice daily (These 3 have allowed me to discontinue (approved by doctor) bp meds I was on. Calcium Citrate 500 mg. daily/Vitamin D3 2,400 iu daily/K2 (MK7) 100 mcg daily (osteopenia and fam. hist. of severe osteoporosis). Stress B Complex (1/2 dose)/Quercetin (for allergies/asthma)/Magnesium (400 mg. oral glycinate and about 50 mg. magnesium chloride spray oil a day, divided throughout day).

Tapered Zoloft about 6 wks. Totally off since the end of July (25-29, 2014). 3 wks. vertigo at end of taper, then 3-4 wks. OK, followed by withdrawal symptoms increasing in severity (nausea, gastric disturbances, loss of appetite, insomnia, restlessness, jitters, anxiety, agitation--jumping out of my skin--possible akathisia?) Seem to have paradoxical reactions to everything new, even Vitamin C. Severity of akathisia comes and goes, but is constant to some degree. Hard to leave house, and cannot be home alone. (Retired)

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oskcajga, I wonder if your experience is typical. Thanks for the warning. The thing I seem to have the most issues with seems to be supplements. This tells me that even after I "think" I am doing better, I still need to be cautious.

Zoloft 100 mg. daily for Chronic Fatigue Syndrome since Oct. 1994 / Synthroid 88 mcg. daily / Supplements: Neptune Krill Oil-1,000 mg. twice daily/Astaxanthin 10 mg. twice daily/Ubiquinol 100 mg. twice daily (These 3 have allowed me to discontinue (approved by doctor) bp meds I was on. Calcium Citrate 500 mg. daily/Vitamin D3 2,400 iu daily/K2 (MK7) 100 mcg daily (osteopenia and fam. hist. of severe osteoporosis). Stress B Complex (1/2 dose)/Quercetin (for allergies/asthma)/Magnesium (400 mg. oral glycinate and about 50 mg. magnesium chloride spray oil a day, divided throughout day).

Tapered Zoloft about 6 wks. Totally off since the end of July (25-29, 2014). 3 wks. vertigo at end of taper, then 3-4 wks. OK, followed by withdrawal symptoms increasing in severity (nausea, gastric disturbances, loss of appetite, insomnia, restlessness, jitters, anxiety, agitation--jumping out of my skin--possible akathisia?) Seem to have paradoxical reactions to everything new, even Vitamin C. Severity of akathisia comes and goes, but is constant to some degree. Hard to leave house, and cannot be home alone. (Retired)

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If anyone needs additional support in dealing with akathisia, there's a facebook group called "Living with Akathisia". You are welcome to join. 

I wish everybody health, peace of mind and body and recovery. 

I suffer from depression, anxiety, pure-o ocd, and panic attacks since 2004. Been on multiple different psychiatric drugs since 2006. Never had a significant WD problem before, only brain zaps for a month and then I'd be fine...............Been on Cipralex (escitalopram) 15 mg and Fluanxol (flupentixol) 1 mg since Sep 2014. Stopped taking the Cipralex after a fast 20-day taper.Took the last 5 mg Cipralex on Feb 5th, 2015. Then took Seroxat (paroxetine) 10 mg for a week, and stopped it too. Severe WD started suddenly on Feb 16th. RI 5 mg Cipralex on Feb 18th, 2015. RI worked and was relatively stable for a while................April 7 - decreased Fluanxol from 1 mg to 0.5 mg and took it at this dose for a week. - BIG MISTAKE; April 13 - WD starts creeping in; April 14 - RI full dose of Fluanxol 1 mg => severe muscle twitching and jerking when trying to relax and fall asleep, overwhelming sense of doom, dread, terror, and horror, insomnia, hoping to stabilize.
Tried doing a 10% cut off Fluanxol in the end of May for a few days, but quickly updosed to full dose because the twitching returned.
Experiencing waves and windows in the following months.
Unsuccessful brief taper attempt of Fluanxol by 5% on November 1st. Symptoms hit the next day. Too scared to continue tapering, reinstate full dose.
Severe crash in November after stupidly trying a barbiturate on November 9th. Grave mistake. Sense of unshakable inescapable internal torture, like my soul is in hell being tortured, terror/horror/dread/doom (probably akathisia?) that gets especially bad when trying to relax and fall asleep, muscles twitch, jerk and move on their own, shaking, insomnia, can't eat, confusion, disorientation, brain not working normally. Never felt so bad in my entire life. Never experiment with other meds while in WD! Praying to God I stabilize and get back to my baseline.
December - things getting even worse.

January - unbearable suffering

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Hmmm... It says closed June 10, 2015 due to inactivity. Granted, I have not been on in a while, but had been meaning to check in...

 

I wonder if that's a euphemism for "Was issues a cease and desist letter from a judge payed off by the lawyers in a Big Pharma firm".

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Who knows, oskcajga... Last I was on there, though, there did not appear to be a lot of "traffic". Too bad--considering the number suffering from akathisia.

Zoloft 100 mg. daily for Chronic Fatigue Syndrome since Oct. 1994 / Synthroid 88 mcg. daily / Supplements: Neptune Krill Oil-1,000 mg. twice daily/Astaxanthin 10 mg. twice daily/Ubiquinol 100 mg. twice daily (These 3 have allowed me to discontinue (approved by doctor) bp meds I was on. Calcium Citrate 500 mg. daily/Vitamin D3 2,400 iu daily/K2 (MK7) 100 mcg daily (osteopenia and fam. hist. of severe osteoporosis). Stress B Complex (1/2 dose)/Quercetin (for allergies/asthma)/Magnesium (400 mg. oral glycinate and about 50 mg. magnesium chloride spray oil a day, divided throughout day).

Tapered Zoloft about 6 wks. Totally off since the end of July (25-29, 2014). 3 wks. vertigo at end of taper, then 3-4 wks. OK, followed by withdrawal symptoms increasing in severity (nausea, gastric disturbances, loss of appetite, insomnia, restlessness, jitters, anxiety, agitation--jumping out of my skin--possible akathisia?) Seem to have paradoxical reactions to everything new, even Vitamin C. Severity of akathisia comes and goes, but is constant to some degree. Hard to leave house, and cannot be home alone. (Retired)

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I bet many people suffering from it don't even know what exactly they have. Makes me so angry... They get told it's "anxiety" or something else.

I suffer from depression, anxiety, pure-o ocd, and panic attacks since 2004. Been on multiple different psychiatric drugs since 2006. Never had a significant WD problem before, only brain zaps for a month and then I'd be fine...............Been on Cipralex (escitalopram) 15 mg and Fluanxol (flupentixol) 1 mg since Sep 2014. Stopped taking the Cipralex after a fast 20-day taper.Took the last 5 mg Cipralex on Feb 5th, 2015. Then took Seroxat (paroxetine) 10 mg for a week, and stopped it too. Severe WD started suddenly on Feb 16th. RI 5 mg Cipralex on Feb 18th, 2015. RI worked and was relatively stable for a while................April 7 - decreased Fluanxol from 1 mg to 0.5 mg and took it at this dose for a week. - BIG MISTAKE; April 13 - WD starts creeping in; April 14 - RI full dose of Fluanxol 1 mg => severe muscle twitching and jerking when trying to relax and fall asleep, overwhelming sense of doom, dread, terror, and horror, insomnia, hoping to stabilize.
Tried doing a 10% cut off Fluanxol in the end of May for a few days, but quickly updosed to full dose because the twitching returned.
Experiencing waves and windows in the following months.
Unsuccessful brief taper attempt of Fluanxol by 5% on November 1st. Symptoms hit the next day. Too scared to continue tapering, reinstate full dose.
Severe crash in November after stupidly trying a barbiturate on November 9th. Grave mistake. Sense of unshakable inescapable internal torture, like my soul is in hell being tortured, terror/horror/dread/doom (probably akathisia?) that gets especially bad when trying to relax and fall asleep, muscles twitch, jerk and move on their own, shaking, insomnia, can't eat, confusion, disorientation, brain not working normally. Never felt so bad in my entire life. Never experiment with other meds while in WD! Praying to God I stabilize and get back to my baseline.
December - things getting even worse.

January - unbearable suffering

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  • 3 weeks later...

I have had it off and on during WD But didn't know what it was. For some odd reason its hit me like a truck now at 16 months off AD. I think this is the worst its been. Anyone else develop it this late? At first I thought it was neuro anxiety but its on another level. I need it to weaken. When it's strong I think it might be the worst symptom of all

Was on 30mg (Lexapro) for 7-8yrs20mg for 3 months (This was my choice my Doc wanted me to drop much faster)15 mg 2week10mg 2 weeks 5 mg 1 week0 since August 24th . PPI Dexlant  30 mg taper has begun. Cutting 20% currently.  using zantac as needed.  Benzo is currently 0.10mg 

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Akathesia is a massive combination of other symptoms, so it's very very easy to misunderstand what is happening.  Definitely the worst of all the symptoms for me - because it's like DP/DR, in that it's an aggregate of numerous other symptoms.

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Ya it triggers everything else aswell.Osk has yours improved?

Was on 30mg (Lexapro) for 7-8yrs20mg for 3 months (This was my choice my Doc wanted me to drop much faster)15 mg 2week10mg 2 weeks 5 mg 1 week0 since August 24th . PPI Dexlant  30 mg taper has begun. Cutting 20% currently.  using zantac as needed.  Benzo is currently 0.10mg 

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Yes, akathisia is definitely the worst of the symptoms, and I agree that it triggers other symptoms as well! At 16 months off, mine is still constant to some degree, but am starting to have "windows"(?) when it is much lighter!

Zoloft 100 mg. daily for Chronic Fatigue Syndrome since Oct. 1994 / Synthroid 88 mcg. daily / Supplements: Neptune Krill Oil-1,000 mg. twice daily/Astaxanthin 10 mg. twice daily/Ubiquinol 100 mg. twice daily (These 3 have allowed me to discontinue (approved by doctor) bp meds I was on. Calcium Citrate 500 mg. daily/Vitamin D3 2,400 iu daily/K2 (MK7) 100 mcg daily (osteopenia and fam. hist. of severe osteoporosis). Stress B Complex (1/2 dose)/Quercetin (for allergies/asthma)/Magnesium (400 mg. oral glycinate and about 50 mg. magnesium chloride spray oil a day, divided throughout day).

Tapered Zoloft about 6 wks. Totally off since the end of July (25-29, 2014). 3 wks. vertigo at end of taper, then 3-4 wks. OK, followed by withdrawal symptoms increasing in severity (nausea, gastric disturbances, loss of appetite, insomnia, restlessness, jitters, anxiety, agitation--jumping out of my skin--possible akathisia?) Seem to have paradoxical reactions to everything new, even Vitamin C. Severity of akathisia comes and goes, but is constant to some degree. Hard to leave house, and cannot be home alone. (Retired)

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Yes, akathisia is definitely the worst of the symptoms, and I agree that it triggers other symptoms as well! At 16 months off, mine is still constant to some degree, but am starting to have "windows"(?) when it is much lighter!

 

Same.

 

I have found that some supplements make it dramatically worse, and that I have to be extremely careful about everything to not exacerbate it. 

 

Oh well.

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During the day yesterday it wasn't present at all but right around dinner time it hit like a truck again and lasted until 3 am. It was terrifying. Tough symptom to shake. I find the mental part of it tougher than the physical part. My mind is overcome with irrational fears and thoughts and is uncontrollable.

Was on 30mg (Lexapro) for 7-8yrs20mg for 3 months (This was my choice my Doc wanted me to drop much faster)15 mg 2week10mg 2 weeks 5 mg 1 week0 since August 24th . PPI Dexlant  30 mg taper has begun. Cutting 20% currently.  using zantac as needed.  Benzo is currently 0.10mg 

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Yeah, I thought it was psycosis for a long time - but this last month I decided to investigate akathesia more thoroughly and discovered that many of my symptoms were consistent with Akathesia rather than psycosis (although there's overlap between these two conditions as well).  The symptom that really gave it away was the constant internal nervous system restlessness - like a small current of electricity constantly circulating through my brain and peripheral nervous system. 

 

I had a terrible terrible akasthesia response to smoking cannibis 9 months into withdrawal (was getting much much better at that point).  It's been roughly 18 months since I smoked the cannabis, and I'd say I'm like 50-75% recovered (on good days it's around 75%).  I can almost ALWAYS get sleep now - even if it takes several hours for this to happen.

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Wow that's something. I am way too afraid to smoke pot and your story just pretty much guarantees I won't smoke it. I ak so glad you have come so far with this symptom. Hopefully in the next 6-12 months it disappears. Mine really started to be a daily thing about 2 weeks ago after I took a too hot epsom salts bath. I never felt it so strong and than it kept coming every evening. Before that it was not that frequent. What do you do when your in the grip of it and its heavy? I ended up falling asleep around 4am but the nightmares were off the charts.

Was on 30mg (Lexapro) for 7-8yrs20mg for 3 months (This was my choice my Doc wanted me to drop much faster)15 mg 2week10mg 2 weeks 5 mg 1 week0 since August 24th . PPI Dexlant  30 mg taper has begun. Cutting 20% currently.  using zantac as needed.  Benzo is currently 0.10mg 

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Wow that's something. I am way too afraid to smoke pot and your story just pretty much guarantees I won't smoke it. I ak so glad you have come so far with this symptom. Hopefully in the next 6-12 months it disappears. Mine really started to be a daily thing about 2 weeks ago after I took a too hot epsom salts bath. I never felt it so strong and than it kept coming every evening. Before that it was not that frequent. What do you do when your in the grip of it and its heavy? I ended up falling asleep around 4am but the nightmares were off the charts.

 

I had an overdose to epsome salt baths too - made akathesia worse for a while, but now it's settling down.  I'd say it lasted 3 days and then I was back to how I was before.

 

There's a very small threshold between the relaxing feelings of epsome salt baths and getting too much - I try to get out of the bath AS SOON as I start to feel sleepy, and then quickly wash myself off.

 

In terms of coping...I don't do anything :(  Nothing to do really, just be patient and wait till my body heals and avoid overdoing supplements in the future.  That's the worst part - nothing but patience can fix the problem.

 

Exercise helps a bit too.

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Yes, nothing but patience. Exercise just ramps me up. I also do not tolerate ANY meds or supplements that I was not already taking before withdrawal. I've lived with this constantly for 16 months now, but on most days, it's slightly lighter than it used to be, and I do have days now when it's considerably lighter. At least now, I have some hope that it will be gone at some point. There are still days when it's hard to see it that way, though.

Zoloft 100 mg. daily for Chronic Fatigue Syndrome since Oct. 1994 / Synthroid 88 mcg. daily / Supplements: Neptune Krill Oil-1,000 mg. twice daily/Astaxanthin 10 mg. twice daily/Ubiquinol 100 mg. twice daily (These 3 have allowed me to discontinue (approved by doctor) bp meds I was on. Calcium Citrate 500 mg. daily/Vitamin D3 2,400 iu daily/K2 (MK7) 100 mcg daily (osteopenia and fam. hist. of severe osteoporosis). Stress B Complex (1/2 dose)/Quercetin (for allergies/asthma)/Magnesium (400 mg. oral glycinate and about 50 mg. magnesium chloride spray oil a day, divided throughout day).

Tapered Zoloft about 6 wks. Totally off since the end of July (25-29, 2014). 3 wks. vertigo at end of taper, then 3-4 wks. OK, followed by withdrawal symptoms increasing in severity (nausea, gastric disturbances, loss of appetite, insomnia, restlessness, jitters, anxiety, agitation--jumping out of my skin--possible akathisia?) Seem to have paradoxical reactions to everything new, even Vitamin C. Severity of akathisia comes and goes, but is constant to some degree. Hard to leave house, and cannot be home alone. (Retired)

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Ya I have 0 exercise tolerable at the moment but I so find walking helps so thats a moderate form of exercise. Luvtoknit glad your symptoms have improved. I think it will continue to weaken. Mine has been ramped up lately but Im hopeful it will improve soon. I had such a good day for me yesterday and ir hit me out of nowhere.

 

Osk I think ill just do the footbath it never bothered me only helped. Did any of you guys try vitamin C as the blog suggests?

Was on 30mg (Lexapro) for 7-8yrs20mg for 3 months (This was my choice my Doc wanted me to drop much faster)15 mg 2week10mg 2 weeks 5 mg 1 week0 since August 24th . PPI Dexlant  30 mg taper has begun. Cutting 20% currently.  using zantac as needed.  Benzo is currently 0.10mg 

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Right now it's not so strong but I feel like im waiting for it to happen?

Was on 30mg (Lexapro) for 7-8yrs20mg for 3 months (This was my choice my Doc wanted me to drop much faster)15 mg 2week10mg 2 weeks 5 mg 1 week0 since August 24th . PPI Dexlant  30 mg taper has begun. Cutting 20% currently.  using zantac as needed.  Benzo is currently 0.10mg 

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Mort81--I think "waiting for it to happen" is the story of our lives. It's always there to SOME degree--or is it? Sometimes when I can just barely tell it's there, I wonder if it really is--or if it's just that I've lived with it so long I don't know the difference... Or like you say, I'm "waiting for it to happen"! Like you said earlier, Mort, the mental is far worse than the physical for me!

 

Not sure any of this makes sense, but it seems to be where I sometimes find myself now. Beats the heck out of pulling my hair out, punching holes in walls, and throwing things like I was almost constantly even just a few months ago. I went through that stage for over a year! Even a little improvement is welcome after that!!

Zoloft 100 mg. daily for Chronic Fatigue Syndrome since Oct. 1994 / Synthroid 88 mcg. daily / Supplements: Neptune Krill Oil-1,000 mg. twice daily/Astaxanthin 10 mg. twice daily/Ubiquinol 100 mg. twice daily (These 3 have allowed me to discontinue (approved by doctor) bp meds I was on. Calcium Citrate 500 mg. daily/Vitamin D3 2,400 iu daily/K2 (MK7) 100 mcg daily (osteopenia and fam. hist. of severe osteoporosis). Stress B Complex (1/2 dose)/Quercetin (for allergies/asthma)/Magnesium (400 mg. oral glycinate and about 50 mg. magnesium chloride spray oil a day, divided throughout day).

Tapered Zoloft about 6 wks. Totally off since the end of July (25-29, 2014). 3 wks. vertigo at end of taper, then 3-4 wks. OK, followed by withdrawal symptoms increasing in severity (nausea, gastric disturbances, loss of appetite, insomnia, restlessness, jitters, anxiety, agitation--jumping out of my skin--possible akathisia?) Seem to have paradoxical reactions to everything new, even Vitamin C. Severity of akathisia comes and goes, but is constant to some degree. Hard to leave house, and cannot be home alone. (Retired)

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Ya you make alot of sense. I am sorry you had those experiences its unbelievable. Im not sure why mine are coming on so late. But I guess there is no rhyme or reasons for what we are dealing with. Ya mentally it's 100 x worse. Once we survive the Intensity of these feelings I think a great appreciation for any bit of calmness will be the result.

 

The waiting to happen thing is new for me. My symptoms have been fairly heavy and constant but not the askathisia. I had stomach pain for 10 months. And Weakness and fatigue for 6 months that had me housebound. This isnt constant but its scared me enough that when its not there I fear it much more than my other symptoms.

 

Luvtoknit im so glad your starting to improve from this symptom . Cause I know when its heavy it feels like its going to break you.

Was on 30mg (Lexapro) for 7-8yrs20mg for 3 months (This was my choice my Doc wanted me to drop much faster)15 mg 2week10mg 2 weeks 5 mg 1 week0 since August 24th . PPI Dexlant  30 mg taper has begun. Cutting 20% currently.  using zantac as needed.  Benzo is currently 0.10mg 

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From what I've heard, those who finally got rid of the akathisia tend to live in fear that it will return... Even months later. You are so right, though... When it is intense, it does feel like it will break you!

Zoloft 100 mg. daily for Chronic Fatigue Syndrome since Oct. 1994 / Synthroid 88 mcg. daily / Supplements: Neptune Krill Oil-1,000 mg. twice daily/Astaxanthin 10 mg. twice daily/Ubiquinol 100 mg. twice daily (These 3 have allowed me to discontinue (approved by doctor) bp meds I was on. Calcium Citrate 500 mg. daily/Vitamin D3 2,400 iu daily/K2 (MK7) 100 mcg daily (osteopenia and fam. hist. of severe osteoporosis). Stress B Complex (1/2 dose)/Quercetin (for allergies/asthma)/Magnesium (400 mg. oral glycinate and about 50 mg. magnesium chloride spray oil a day, divided throughout day).

Tapered Zoloft about 6 wks. Totally off since the end of July (25-29, 2014). 3 wks. vertigo at end of taper, then 3-4 wks. OK, followed by withdrawal symptoms increasing in severity (nausea, gastric disturbances, loss of appetite, insomnia, restlessness, jitters, anxiety, agitation--jumping out of my skin--possible akathisia?) Seem to have paradoxical reactions to everything new, even Vitamin C. Severity of akathisia comes and goes, but is constant to some degree. Hard to leave house, and cannot be home alone. (Retired)

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From what I've heard, those who finally got rid of the akathisia tend to live in fear that it will return... Even months later. You are so right, though... When it is intense, it does feel like it will break you!

 

From my experience, it WILL return (and may get even worse) if we're not very careful about what we put into our bodies.

 

:(

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I think with any of these symptoms people don't think they are in the clear until nothing happens for a long time Im assuming.

Was on 30mg (Lexapro) for 7-8yrs20mg for 3 months (This was my choice my Doc wanted me to drop much faster)15 mg 2week10mg 2 weeks 5 mg 1 week0 since August 24th . PPI Dexlant  30 mg taper has begun. Cutting 20% currently.  using zantac as needed.  Benzo is currently 0.10mg 

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From what I've heard, those who finally got rid of the akathisia tend to live in fear that it will return... Even months later. You are so right, though... When it is intense, it does feel like it will break you!

 

From my experience, it WILL return (and may get even worse) if we're not very careful about what we put into our bodies.

 

:(

 

My doc says that if it returns it gets harder and harder to treat each time one comes off a med.

 

Yes, I live in fear of its return after having experienced it to the extreme more than once.

 

The fear of it returning can also trigger its return. Be careful and take care of yourself.

Prozac 1999-2009 quit semi cold turkey.

 

2012 Placed on Seroquel 25 mg, Tranxene (Clorezepate) 3.75 mg 3x a day, Remeron 30 mg for anxiety/akathesia.

 

Weaned off Seroquel and Tranxene .to Remeron 15 Mg.

In May 2014 tried quitting Remeron at its lowest dose. Had severe withdrawals.Reinstated Remeron at 30 mg by doctor. August 5 2014 entered hospital. Doctor pulled the Remeron and bridged it to Pamelor (Nortriptyline) 40mg and Zyprexa 2.5mg.After removing the Remeron all my bad symptoms went away and I am stable.

 

9/11/14 - 7.5 mg tranxene, 40mg Pamelor, Zyprexa 2.5mg

12/29/14 -  20mg Pamelor, 1/6/15,  7/31/15 3.5mg, 8/10/15 3.2 mg, 9/15/15 2.2mg, 10/15/15 1.8mg

(Feb 2016 - 1.4mg Pamelor only -  OFF OF TRANXENE AND ZYPREXA SINCE DEC 2014 BENZO FREE Since 2014. Nortrityline (Pamelor) .8mg Aug 2016

March 2017 DRUG FREE

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From what I've heard, those who finally got rid of the akathisia tend to live in fear that it will return... Even months later. You are so right, though... When it is intense, it does feel like it will break you!

 

From my experience, it WILL return (and may get even worse) if we're not very careful about what we put into our bodies.

 

:(

 

My doc says that if it returns it gets harder and harder to treat each time one comes off a med.

 

Yes, I live in fear of its return after having experienced it to the extreme more than once.

 

The fear of it returning can also trigger its return. Be careful and take care of yourself.

 

 

How does one "treat" akathesia in that context?  I don't know of any effective long term treatments that don't cause dependence and tolerance/withdrawal (e.g., I've read of people using beta blockers or calcium channel blockers, but that solves nothing long term and creates a bunch of problems - so before long the person has akathesia and heart palpatations, anxiety, and a bunch of other side effects).

 

I've found magnesium to help short term - but then if I do too much it makes the akathesia like 2X worse, so there are some risks there.

 

Probably one of the most frustrating conditions imaginable.

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From what I've heard, those who finally got rid of the akathisia tend to live in fear that it will return... Even months later. You are so right, though... When it is intense, it does feel like it will break you!

 

From my experience, it WILL return (and may get even worse) if we're not very careful about what we put into our bodies.

 

:(

 

My doc says that if it returns it gets harder and harder to treat each time one comes off a med.

 

Yes, I live in fear of its return after having experienced it to the extreme more than once.

 

The fear of it returning can also trigger its return. Be careful and take care of yourself.

 

 

How does one "treat" akathesia in that context?  I don't know of any effective long term treatments that don't cause dependence and tolerance/withdrawal (e.g., I've read of people using beta blockers or calcium channel blockers, but that solves nothing long term and creates a bunch of problems - so before long the person has akathesia and heart palpatations, anxiety, and a bunch of other side effects).

 

I've found magnesium to help short term - but then if I do too much it makes the akathesia like 2X worse, so there are some risks there.

 

Probably one of the most frustrating conditions imaginable.

 

My doc says that it takes stronger and stronger drugs to bring it under control everytime it comes back.

 

Magnesium has also helped me. I've now had to cut out a lot of sugar. No more high fructose corn syrup soft drinks. My doc also says that stress is a big trigger of it.. That's the hard one though, trying to avoid stress. Almost impossible in our society.

Prozac 1999-2009 quit semi cold turkey.

 

2012 Placed on Seroquel 25 mg, Tranxene (Clorezepate) 3.75 mg 3x a day, Remeron 30 mg for anxiety/akathesia.

 

Weaned off Seroquel and Tranxene .to Remeron 15 Mg.

In May 2014 tried quitting Remeron at its lowest dose. Had severe withdrawals.Reinstated Remeron at 30 mg by doctor. August 5 2014 entered hospital. Doctor pulled the Remeron and bridged it to Pamelor (Nortriptyline) 40mg and Zyprexa 2.5mg.After removing the Remeron all my bad symptoms went away and I am stable.

 

9/11/14 - 7.5 mg tranxene, 40mg Pamelor, Zyprexa 2.5mg

12/29/14 -  20mg Pamelor, 1/6/15,  7/31/15 3.5mg, 8/10/15 3.2 mg, 9/15/15 2.2mg, 10/15/15 1.8mg

(Feb 2016 - 1.4mg Pamelor only -  OFF OF TRANXENE AND ZYPREXA SINCE DEC 2014 BENZO FREE Since 2014. Nortrityline (Pamelor) .8mg Aug 2016

March 2017 DRUG FREE

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One thing we can hang our hats on is, all of the recovery stories on this website not one of them complain of suffering from akathasia. I can't believe an Epson Salts bath triggered such a heavy akathisia wave. Unreal the water was just too hot.

Was on 30mg (Lexapro) for 7-8yrs20mg for 3 months (This was my choice my Doc wanted me to drop much faster)15 mg 2week10mg 2 weeks 5 mg 1 week0 since August 24th . PPI Dexlant  30 mg taper has begun. Cutting 20% currently.  using zantac as needed.  Benzo is currently 0.10mg 

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