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How I survived the MOTHER of ALL side effects - EFFING AKATHISIA. *Warning, long post!*


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Never in a million years would I have thought that ANYTHING could possibly be worse than my disorder of major bipolar depression and anxiety.  I'd have laughed in the face of anyone who told me otherwise.  Nevertheless, I was wrong.  

Here's how I came out alive from thee most brutal experience of my entire life.

Years back, I had settled on Lamictal and Gabapentin to keep my moods in check.  However, being in my young 20s, I wasn't yet equipped with the discipline to battle my mental illness via diet, lifestyle changes, and giving up my lovely alcoholic beverages.  I eventually came across Suboxone, an opiate, which did wonders for my depression for about the first year I was on it.  It also ended my alcoholism on the very first day.

During this time, I found magnesium (via epsom salts), which helped quite a lot with my illness, so I decided to quit my Lamictal and Gabapentin, and stay on the Suboxone.  Well, the depression seemed to return, but I was always trying to figure out natural ways to heal it.  Fast forward another couple of years, and I decide it's time to quit the Suboxone, as it had lost most of its antidepressant effect.  I use Kratom, a natural herb, to successfully withdraw from Suboxone.  However, when I quit the Kratom, I went into a manic episode with full-blown delusions, etc.

My family urges me to go to the ER, to which I comply.  While there, I'm given an injection of Geodon, which knocks me out for about 2 hours (I hadn't slept or eaten at all in over 2 days at that point.)  I'm given a script for a full bottle of Geodon and am sent on my way.

Through Geodon and the use of strong Epsom salt baths, my mania was quickly brought to a halt.  My sleep, though, was affected by the opiate withdrawal (a common symptom), so I stayed on a low dose of Geodon - about 20mg per night - to help me sleep through the night without waking.  Fast forward a couple of months, and I try and quit the Geodon.  Horrible depression came rolling back in, so I decided that I must obviously need Geodon to keep the depression at bay.

So, for the first time, I decide to try upping my dose to 40mg and see how I fare.  Shortly after that dose, there was no doubt my brain was heading towards hypomanic land, but I managed to fall asleep.  The next day I dose again, but start experiencing very intense anxiety/panic.  I go out for a day with my wife, and drink some wine with lunch in order to calm myself down.  

Hey, at least I wasn't horribly depressed.

I get home, and the anxiety continues, at a very high level.  I end up drinking almost an entire bottle of wine to calm myself down, awaking with a decent hangover the next morning.  I then try and dose Geodon again, and BAM - FULL BLOWN akathisia kicks in.  

For those of you who have never felt it, there's no doubt that you'd much rather have both of your legs broken.

You'd rather be crucified.

I'd have chopped my balls off to make it stop.

As one man on a message board put it, "I was ready to sell my family into slavery to make it end."

He probably wasn't joking.

So I end up in the ER, pacing back and forth, where I'm given an Ativan injection.  Interestingly, a young medical student in training had actually experienced this before from an injection of a different medication, so he understood my pain.  I remember telling him, "If someone showed me a door to hell on my left, I'd walk through it on the off chance that perhaps hell is more tolerable than akathisia!"  It took probably a full hour to feel any relief, and I decided to fall asleep at the hospital to speak with a psychiatrist the next day.  After all, I obviously needed some sort of replacement medication.  I wake up the next morning, and am actually feeling fine, with no akathisia.

Until they served breakfast.

Upon eating some pancakes with syrup, POW - full-blown akathisia returns.  I am literally in tears, pacing back and forth frantically, desperate for help.  With the nurse seeing that I'm in severe turmoil, she sympathizes greatly.  I ask to try Cogentin for relief, to which she agrees.  She also prescribes Zyprexa as a replacement medication.  I fill the scripts and head home.

And I take the Zyprexa as prescribed, starting with 5mg.

HOLY SHIT, SWEET MOTHER OF GOD.

Akathisia returns with a vengeance, EVEN WORSE than before!  I awake at about 4 a.m., my heart POUNDING, and I immediately start pacing.  I end up outside, walking ALL day long, completely unable to sit still.  My nerves are on fire.  My legs are killing me from all of the walking.  I hold out as long as I can, before cracking open another bottle of wine and guzzling glass after glass.  It was the only saving grace I had.  Suicide was CONSTANTLY on my mind, for every single second.  I decided that, if I do it, I would slit my throat with a serrated blade.  It seemed to be the quickest and easiest way out.

The next day, I have no choice to return to the ER.  Still pacing the entire time, I'm praying constantly for any amount of mercy from above.  A doctor finally arrives, and asks if I'm feeling manic.  I tell him not at all, just horrid akathisia.  He goes and talks to the on-staff psychiatrist.

What I heard pissed me the hell off.

I overheard him talking to the psychiatrist on staff, saying something along the lines of, "These people come in, with their disorder flaring up, and they say "Oooohh, it's not the disorder, it's a side effect of the medication!""  Basically, he believes I'm full of shit before even seeing me.

He takes his sweet-ass time, making me pace for probably an entire hour before coming in to see me.  His advice?  Go home and double your dose of Cogentin.  The medication that did absolutely nothing.

I begged to try something else, such as Propranolol, with no luck.  At this point, I knew I was fucked, and would have to do anything to survive this.

First step was finding out what foods I could tolerate.  I began a diet of nothing but eggs, an easily digestable food.  It seemed that anything heavy, especially carb-based foods, would bring on sweats and akathisia.  So I had to figure out just how much of which foods I could handle without these sweats being triggered.

My akathisia started to dimish at this time with my super-strict eggs only diet, but I was now also battling with suicidal depression, (multiple crying spells daily), on top of everything else, now that I was unmedicated.  Many times, I had completely commited and devoted myself to suicide, even writing a letter in one instance saying goodbye.

But, for whatever reason, at the VERY last minute before going off to do the deed, either God/guardian angels/or ancestral spirits - who knows what was doing this - would do something each and every time, to offer me relief before the next episode.  There were times of literally complete remission for a few whole days, only to have the suicidal depression and akathisia return.

All of this time, I was sleeping, on average, only 2 hours per night.  Sometimes 1, sometimes no sleep at all.  It was hell.

I decided to fast, using my juicer, which lasted about 6 days, along with intense prayer each day for answers to my issues.  During that time, I noticed something very interesting.  One day I juiced a bunch of veggies, and added in 3 whole apples.  I felt my blood sugar skyrocket, and then crash.  I went into extreme sweats, anxiety, etc, along with ravenous hunger.  I stuck it out, even though I was dying to eat.  Even plain veggie juice along was causing crashes as well.

Breaking my fast, I eventually added in highly steamed vegetables, which I could tolerate in small amounts without triggering these sweats.  However, any more that about 4-5 pieces of broccoli would send me over the edge.

Since I have also been battling adrenal fatigue, I decide to give vitamin C a try via Ester-C brand, as it was helping a lot in the past.  I couldn't, however, handle any more than about 150 mg or so without extreme anxiety/overstimulation kicking in.

One night, after feeling like horrible shit all day with suicidal ideation, out of anger I say screw this, and decide to grab some pistachios, which I had an intense craving for for some reason.  To my surprise, the pistachios send me into no sweats whatsoever.  So I then buy some almonds - same result...zero sweats, zero akathisia.  I begin eating them everyday.

For whatever reason, the mixed nuts boosted my adrenal health just enough to once again handle vitamin C.  This is where things got interesting.

I decide to pound my body with megadosing, taking about 30,000 - 40,000 mg that first day.  Your limit of vitamin C absorption is determined by a loosening of the stools, indicating you've had enough.  I experienced no loosening of stools whatsoever, even with 40,000 mg per day.  My sleep began to improve, as did my mood by some amount.

One night, I'm eating the typical steamed veggies that my wife prepared.  But, she had also cooked plantains, a heavy carb source.  A small amount of mashed plantain was accidentally mixed in with my veggies, and I started eating it.  I let out an "uh-oh, here we go" after ingesting some, but interestingly, I experienced no sweats or akathisia.  So I decide to eat some more, to no ill effect.  To my surprise, the vitamin C had upped my threshold for handling carbs!

I also add in betaine HCL, a supplement used for increasing stomach acid, in order to aid digestion.  Definitely seemed to help things along.

The next day, I eat an entire half of a plantain, and feel fine.  I come home that night, and devour two whole bowls of rice and beans, and even have a baked potato before bed.  The next day, I start to feel anxiety, but ignore it and keep up with the carbs.  By the third day, full-blown akathisia had returned, to my devastation, brought on by too many carbs.

So, I returned to my simple diet of nothing but eggs, nuts, and heavily steamed veggies for a few days, which even those were sending me into sweats.  I resumed vitamin C megadosing, and within a few days the sweats once again disappeared.  I was able to handle carbs once again, gladly, but knew that I had to limit them to a responsible level.

I start researching hypoglycemia/insulin resistance issues, and the symptoms of these disorders were very interesting, as many of them were remarkably close - well, actually, pretty much IDENTICAL, to symptoms of akathisia.  Extreme restlessness (unable to sit still), crying spells, extreme anxiety, hot/cold sweats, suicidal ideation, overwhelming feelings of doom/dread, intense fear, muscle twitches, feelings of "going crazy" etc.  These symptoms are mostly due to having far too much insulin in the blood.  

This had me thinking: is it possible that akathisia is actually a case of EXTREME insulin resistance, a not-uncommon side effect of antipsychotics?  I can't be sure, but it seemed to make sense to me.  Another possibility is that the unlucky souls who experience akathisia are those who had poor adrenal function prior to using the medication, as I had.

As long as I had the vitamin C on board, I was able to continue eating healthy carbs each day, as long as I didn't take it too far!

I was experiencing an increase in energy with the carb increase, but my suicidal depression remained.  So, out of desperation, I contact my former psychiatrist, and luckily she agreed to start me back on Lamictal prior to my first appointment.  I was terrified the Lamictal would aggravate my akathisia, so I began on only 12.5 mg.  No ill effects, and I actually felt an ever-so-slight boost from it.

The next day, I'm up to 25, feeling more of a slight boost, with no aggravation of akathisia!  By the time a week went by on 25mg, I was handling pretty much any amount of carbs I wanted with no akathisia whatsoever.  I kept up with the vitamin C during this time as well, at about 10,000 mg per day, and I still do today.

I'm now up to 100 mg, at the 3 week mark, and can even handle tea without any akathisia symptoms!  Too much caffeine can bring back sweats via adrenal crashes, but that can be counteracted with very strong epsom footbaths or magnesium supplementation.  The Lamictal has seemingly cured all of my akathisia issues!

Looking at the bright side, the akathisia has brought about a complete revamp in my diet, which is now super healthy, and I stick to it religiously, eating veggies every day, good carbs, and no sugar.

A special thanks to God, and whoever else was looking out for me.  I dearly hope that this can help anyone suffering from this BRUTAL, HORRID, ASS-KICKING side effect of AAPs.

Cheers to good health,

Jay.

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The standard treatments for Akathisia are propranolol or cogentin. Propranolol is more specific to Akathisia and cogentin is drying (dry eyes, mouth). You can take propranolol up to 100's of mg, just watch your blood pressure.

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interesting.  my pdoc is conducting a study about the relationship (if any) between BP1 and insulin resistance.  i'm not insulin resistant, but i will be part of the study.  i'll pass it on if i learn anything.

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Perhaps I am misreading your post, but I am to understand that the only doctor you saw during this ordeal was the ER doctor?  Or were you under the care of a psychiatrist?  If you were under the care of a psychiatrist than I am shocked that your akathesia wasn't properly treated.  I have experienced akathesia many times, but, fortunately, was able to control it with Cogentin.  I also was fortunate enough to have a good psychiatrist who was available when I called.

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Your post is a testimony to why someone with a serious psychiatric disorder, needs to develop a relationship with a psychiatrist and work closely with the doctor to manage your illness.  Regular appointments, whether you are on meds or not, so that the physician knows you and can manage adverse side effects such as akathisia.

 

You really suffered a lot, and it did not need to be this hard.  It was awful, obviously.

 

To those reading please don't think you can control Bipolar illness with an Epsom salts bath. 

Edited by bpladybug
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Thanks for the post, ladybug.  First off, I am NOT saying that an epsom salt bath will cure your bipolar disorder.  That's ridiculous.  If you read the end of my post, you will find that I eventually went back on Lamictal, which I am using now (100 mg).

During this time, I had gone to a psyhiatrist and told him about my experience of akathisia with Geodon.  I also told him I'd like to restart medication.  What he told me was that because I was on 400mg Lamictal daily in the past, that it obviously "was not working," and that "there seems to be something else going on here."  I said the hell with him, and made another appointment.  I just had that first appointment today, and am now under the care of the same psychiatrist I used to see in the past.

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I'm sharing this info because, in all of the message boards I've browsed concerning akathisia, I've never seen this particular approach nor theory of its cause.  Of course I could be wrong, but it helped me immensely.  If you browse the net, you will find people who have literally tried nearly EVERYTHING for akathisia, including cogentin and propranolol and MANY more treatments, with little or no effect.  Acute akathisia and tardive akathisia are two different things.  I've been suffering from the tardive variety, I believe. 

One man online, by the name of Dave, has been suffering from tardive akathisia for EIGHT YEARS, and has found nothing to help.  Another has had it for over 5 years now, and is in constant survival mode.  Just horrible, horrible stuff.  Perhaps people like them could try this route and finally find some measure of relief.  That's what I'm praying for!

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It seems you got Akathisia right after a med change so that would not be tardive (which means in this context "happens in late stage treatment")

My akathisia was caused after raising my dosage of Geodon, which I was on for about 5 or 6 months before doing so.  It certainly may be acute akathisia, which can easily last for months with many people.  I'm just trying to figure out what akathisia sufferers have in common, and why it occurs.

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Interesting what people will do and Im just as guilty sometimes.

 

I wish passionfruit juice cured bp and anxiety.

 

Long ago when I was on 30mg abilify I started having the tardive effects - my eyes would constantly blink, my lips & mouth would make a "rabbit face." My vision was also getty blurry however I separate that as being a SI of abilify.

 

Anyway, lucky duck me as soon as I stopped the abilify with the help of my Pnurse - no more of those god-awful problems.

 

Yes, I think food can help a lot of issues - mental and physical. But when you are going at the rate of OP some kind of professional help should be looking after you. IMO.

 

I already ate a delicious salad for lunch - now onto all the gluten and carbs I can find.

 

db

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  • 5 months later...

I have had severe akathisia before to the point where I couldn't even sit down at a restaurant to eat dinner. I was walking laps in the parking lot my most severe case was when I was on Haldol.

 

Second severe case: Abilify

 

And what I am on now causes moderate akathesia: 160 mg of Geodon.

 

I feel your pain. I've been there...and I agree Cogentin barely works (Im taking 1 mg 2x day)

 

 

Akathisia is hard to explain and people just don't get it. It can mimic other illnesses. It is complicated to treat. It SUCKS!

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  • 1 year later...

Have had Akathisia and akathisia spells for 9 years from an adverse reaction to the SSRI Lexapro. One of the nastiest things I have ever experienced..... I never felt anything like it before taking that drug. It is torture.

Thanks for writing down your experiences. Doctors rarely believe me when I tell them I have akathisia or the episode of serotonin syndrome. 

For me it is like an excruciating tickling sensation inside various areas of my body. For the first 2 years I walked between 5 and 10 miles every day to "burn off" the nerves. I rarely have it that bad anymore but I still have it on a residual basis. I have had to take a low dose of xanax for the last 9 years so I can sleep and once in a while for a really bad recurrence during the day. 

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  • 3 weeks later...

I'm suffering from akathisia right now. I've had worse but it only lasted for about a month. The akathisia I'm suffering from now has lasted for more 6 months. Invega sustenna is believed to be the culprit so I stopped the medication about 3 months ago and I'm still suffering from akathisia. My previous psychiatrist told me Invega is stored in the fat cells so it could still be there and that is what could be causing my akathisia.

Things I'm trying right now are Vitamin B6 100mg (I read of a clinical trial where people were given 600 mg of Vitamin B6 daily with positive results, however my current doc won't give me pyrodoxamine which is the safer of the Vitamin B6s and its not sold in stores anymore. Pyrodoxine hydrochloride is what I take now but I can only take about 100 mg because above that I can get temporary neuropathy. I have tried 600 mg's of pyrodoxine but after the 6th dose I felt like I was suffering from neuropathy in my eyes), drinking coconut water (helps a little), drinking Gatorade (for electrolytes but doesn't help much. Someone recommended electrolytes to somebody else that was suffering from akathisia), taking a Vitamin B complex supplement (I feel like it helps, but only a little bit), and Vitamin C (helps a little bit)

I'm thinking of upping the dosage of Vitamin C to see how I do. When I took the 600 mg of pyrodoxine I felt like it didn't help, but I think I'll try about 200-300mgs daily and see how I do.

I've also been prescribed diazepam and propranolol but none work.

 

Does anyone have any other recommendations?

Edited by GMSkel
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  • 7 months later...
On July 3, 2013 at 1:43 PM, Jay Lamb said:

Thanks for the post, ladybug.  First off, I am NOT saying that an epsom salt bath will cure your bipolar disorder.  That's ridiculous.  If you read the end of my post, you will find that I eventually went back on Lamictal, which I am using now (100 mg).

During this time, I had gone to a psyhiatrist and told him about my experience of akathisia with Geodon.  I also told him I'd like to restart medication.  What he told me was that because I was on 400mg Lamictal daily in the past, that it obviously "was not working," and that "there seems to be something else going on here."  I said the hell with him, and made another appointment.  I just had that first appointment today, and am now under the care of the same psychiatrist I used to see in the past.

I am glad to hear the Geodon worked for you.  I had the most horrible nightmares(awake) even scarier on Geodon.  Simply put this 63 year-old Veteran with PTSD has tried them all.  I pick Valium 20mg and now on Efflexor for depression.

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  • 2 years later...

I wish to thank Jay for his beautifully written post,  even though it's been five years since it was written. I'd give anything to hear how he's doing now. 

I know first hand that COMPLETELY eliminating sugar works overnight miracles for akathesia. I'm convinced it's an insulin related side effect and have often wondered whether akathesia might even be a trigger for autism,  in some cases. 

Magnesium citrate,  B vitamins and D3 are essentials, too.

Yes,  a good medical doctor is important,  but my experience is that "good" and "doctor" don't always add up.

There is so much I would love to write, but Jay's outstanding post is enough.

Thank you,  again, Jay. I hope you write for a living. 

 

 

 

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  • 4 years later...
On 7/3/2013 at 4:34 PM, lysergia said:

interesting.  my pdoc is conducting a study about the relationship (if any) between BP1 and insulin resistance.  i'm not insulin resistant, but i will be part of the study.  i'll pass it on if i learn anything.

Hi Lysergia, 

I'm reading this thread with great interest as I'm caring for my wife. Did this study you mention happen or yield any results in regards to insulin? 

I really think, this could be a component.. Diabetes is common in the South Asian, West Indian/Black African community. Our Psychiatrist said side effects to antipyschotics are more common among South Asian community. 

I'm really interested to find out if there's a correlation! 

Many thanks! 

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@ActiveAssist  unfortunately this thread was started in 2013 and most of the contributors have not been around for multiple years.  Lysergia herself was last here at the beginning of 2021 and it is not really likely that she will return to see your question.  (In cases in which you are pulling up old threads, it is always best to click on the name tile of the person you are specifically replying to so that you can see when they were last active.)

I am also not clear from what you say whether you or your wife are the patient.  CrazyBoards is a first person site and we are not equipped to provide support to caregivers.  You are welcome to send me a PM if you want more information on this.

Mia (moderator)

Edited by MiaB
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