☼ Elyssa143: Zoloft to Zyprexa

[Altostrata]

Can you tell if this feeling is triggered by something? Bright light? Certain foods?

[Elyssa143]

@Altostrata no. I wish i had a pattern or trigger so I knew how to help myself or keep myself a bit more comfortable.  There is no link to any of my symptoms at all ever. Not even my period. Some periods are way better and some are horrible. I wish i could put my finger on it......i eat really well too and im pretty much still homebound. 

[Rosetta]

Hi, Elyssa,

 

I answered on my thread, too, but I’m putting this here for you, as well.

 

Yes, I think I’m through the worst part.  That is true.  We will see what happens when I have another period.  I would like to believe that “I’m out of the woods,” and to think that is possible is a wonderful feeling.  

 

It’s quite hard to believe I might have turned a corner.  Sometimes, I have a very strange sense that in some parallel universe I “didn’t make it.”  It’s really that unbelievable that I could have survived aka this ia.  (My phone doesn’t like that word; it refuses to let me use it.  I kid you not.  That why it is broken up that way.).  I am completely confident that I am healing and that I can handle anything that is coming up in this journey.  That said, I am afraid if another big wave, of course.

 

I understand your distinction — depression that is situational for a normal person vs. situational for a person in WD.  No, I’m not depressed because I’m discouraged that I have not healed enough at this point.  It’s “chemical” to a great extent mixed with some difficulty adjusting to being home.  There are some neuro-emotions, too, especially when I wake up in the night.  I’m not exercising, and I need to correct that pronto.

 

The fact that you know that SI is “chemical” is very, very fortunate, Elyssa.  If not for SA I would never have known.  I don’t think I would be here right now.  I like to hope that I would have survived somehow, but I simply could not have known that there was any hope that what I was feeling was not real.  Aka this ia was a concept completely unknown to me prior to finding SA.  I did not even conceive of it as a condition that would stop.  I thought what I was feeling was an integral part of the world; that I was experiencing reality and being terrified was justified.  I was furious that my husband did not see what I could see about the danger lurking everywhere.

 

Twenty-two months is a long time.  Don’t let arbitrary time milestones mess with your mind.  You won’t feel healed at the magic 24 month point.  Put that idea away.  However, it is very true that the third year brings a LOT of healing.  I had read that prior to my 2 year anniversary and, at the time, I could not IMAGINE being sick that long, but I was, and I made it through.  You will, too.  You won’t realize it when you cross the threshold.  You will realize it later.  A couple of months later.  I can look back and see that in just the last two months a weight has lifted.  I expect another wave, maybe even a bad one, but the constant, daily, anxiety has gone, more or less.  I’m not sure when it stopped being a daily burden and became a burden that I carried only during a wave.  Sometime in August or maybe July?  

 

Edit: added:  I relate very well to your description of aka this ia.  It’s horrible.  I had it all the time, every minute for a long, long time.  Butterflies times 1000.  What a great description!  I also described it as a vibration in my brain and all throughout my body.  I used to sit curled up on the stairs and simply scream.  I felt such intense fear.  At times I was afraid of myself, I think.  As I healed the vibration feeling occurred in my arms and legs instead of all over, and that was also disconcerting because it was distinctly in a part of my body instead of all over.  At that point I started to understand why restless legs syndrome is mistakenly used interchangeably with aka.  For someone who never had aka the restless legs feeling would be the closest description that might make any sense at all.  I went through a period of time when it intensified in the early evening.  One of the moderators suggested that sundowners syndrome was analogous to aka intensifying at that time.

 

Elyssa, I was to asssure you that someday what is happening will be over and you will feel completely normal again.  I understand that need to hear that over and over and over again.  It’s true.  You are going to be whole again.  You are not going to off yourself.  You can’t put that fear out of your mind, I understand, but it is merely a fear that will never be realized.  You are going to heal just like I have.  I have absolutely  no doubt of that!  

 

Right now you have to take life one hour at a time, one minute at a time if you must.  Just put one foot in front of the other.  Distract yourself as much as possible.  I recommend sone kids shows such as Tumbleleaf on Amazon Prime and Puffin Rock on Netflix.  They are very calm, quiet shows.

 

I’ll be thinking of you!  - Rosetta

[Katy398]

Hi Elyssa,

22 hours ago, Rosetta said:

 I understand that need to hear that over and over and over again.  It’s true.  You are going to be whole again.

This statement is so true and we all need to understand this. If we were told throughout each day, for months our brains will disrupt that information and we will still need to hear it over and over and over and over again, until we are healed. Then we can offer it over and over and over again to others. Our brain is tricking us into terrible beliefs and we need others to constantly reaffirm that the messages from our brain are only thoughts and are not reality. I think it’s impossible to do this alone. We all need others to confirm when our brains misfiring. You will get through this You’re a year ahead of me. Here’s to that 3rd year of healing. 

Take care Elyssa

thinking of you Kx

 

[Rosetta]

You will be ok, Elyssa.  I know it’s hard to imagine right now.  I replied to you on my thread.  I tried to copy it here, but couldn’t. Using a mobile phone doesn’t always work well on this site.   You have a type of hormonal disturbance going on right now caused by the CT.  It will very slowly resolve itself as long as you don’t irritate your system with new substances like alcohol or more psych drugs.  Unless a moderator suggests something different stay the course drug free and you will be ok.  It’s hard to tough out, but you can do it.  The SI or “I don’t want to do this anymore,” is perfectly natural and normal in your situation.  How often I thought that same thought and felt that fear!  Try to distract yourself.  You are all ready seeing improvements and they will continue until you are Healed.  I’m living proof!!

Hugs, Rosetta

[Leo1983]

Hi

 

I never asked... Did you heal from your benzo wd? 

[PoetJester]

On 1/13/2020 at 10:48 AM, Elyssa143 said:

@PoetJester

Hey! Long time no talk. I appreciate your kind words and lengthy repsonse! I appreciate you taking the time to comment back. I am greatful i am sleeping much better atleast most the time, except when I have puppies..... but I know thats situatisituational.  How are you doing? My tongue is still not back to the way it should be but im trying to work on my nutrient deficiencies in hopes that my body will heal more efficiently.  I want to be better coming out of this then going in! Are you still collecting golf balls? Are you sleeping any better?

Hey again.  I'm alive....Still doing the golf balls...... I sell most of them, but do hold on to a few as collectibles........I spent the last month fishing out 1500 balls from a creek at a nearby golf course up here in Minneapolis.   It's winter, so there's snow on the ground and it's kind of like going ice fishing with my ball retriever when i go over to the .  It's a single ball retriever so i grab one at a time out of the water and throw them over my back onto the snow and once i get about 200 or so balls i bag them up in plastic grocery bags and throw them in my backpack and bike home 3 miles.............Its kind of chore to wash them, since they're from the water hazard, and i have to use bleach water, dish gloves, a mask and a wire brush or brillo pad to clean them, but they usually come out ok and i occasionally find older balls and balls from courses around the world in there, so that's keeps it kind of interesting......Last month i found a ball from a course in Okinawa, Japan and also one from a major tournament in Korea, the Shinhan Donghae 2006 Open, so that was pretty cool............ 

 

Sleep is still not to good......The last year i have been taking amitriptyline......My sleep just got so bad after three years off that i started trying medications for sleep......If i were to describe my living situation to you, you probably wouldn't believe me.  Besides the terrible sleep, i discovered that i had intestinal worms in late 2016, and was receiving no help from doctors, so was trying to treat myself, in a hot, third-story apartment,  with laxatives, enemas, otc dog and horse dewormers.   It's been pure misery at times.........Imagine like a puppy mill for a human- baking hot apartment (i get direct sunlight through my patio glass sliding doors from 2 pm onward, so it's almost like a magnifying glass in the summer), my bathroom is a disaster zone most days from swallowing bottles of Milk of Magnesia or else trying to give myself enemas to relieve the constipation in a filthy apartment since i am exhausted most days and too tired to clean..........    

 

Besides all the digestive problems, i also have horrible neighbors- for a while i had a senile 65 year old next door neighbor knocking on my door without pants or underwear on, which isn't good at anytime, but when i was often ill and trying to rest and getting daily knocks at my door from someone who at times i wasn't sure if he was living or dead, is pretty trying (he was a seen a few times crawling down the street that our apartment complex is on since he also had palsy in his legs)......At the same time, i had a neighbor directly below me ( i live in a three story, 200 unit apartment complex.  I'm on the third floor) leaving me nasty anonymous letters under my door or in my mailbox about getting a shave and a haircut and a job (i had found one under my door in late 2016 after biking home 30 miles from a golf course with 120 balls in my back pack.  It said "have you ever thought about getting a job?  You may have to get a haircut.  I think you can bag groceries!!!!)   So, yeah.........it turned out to be another 65 year old guy, who had recently gotten out of the county workhouse, for his 4th dui, and also had a long criminal record of shoplifting and sexual harassment charges.    Pretty much an old boys club over here, and at times i wasn't sure if i lived in an apartment complex, or an insane asylum or some sort of palace of depravity.............Anyways

 

 

[PoetJester]

Elyssa,

 

I am posting a story that i wrote for a Protracted Acute Withdrawal facebook group last year.  Dog related stories.  mostly just about bad pet owners..... This is from early 2019....

 

Last fall, i came up behind a big, tall older fellow with a golfer's cap walking his dog in a slovenly manner with his knees bent slightly inwards on the walking/bike path near my apartment (the path goes around a 900 acre lake) as i was biking to the grocery store.   The dog wasn't terribly happy to go at a "leisurely stroll" and for an instant, i saw the spirit of the dog, lifting up his leg to piss on the fellow. dp/dr, or not.   As i passed the fellow on my bike,  i took a quick look at him-  you may know the type- besides being older and wearing the golfer's cap, he had a mustache, glasses, probably bad teeth and bad breath.........I am guessing maybe a numismatist (coin collector) and possibly unintentionally frightening to children in certain situations........ an eternal bachelor-type...........anyways.

 

A month earlier in August, i had been biking to the store again and discovered 6 six large piles of dog crap on the walking/bike path a few blocks from my apartment. I couldn't believe it.  Every 20 feet or so was another pile of dog poo, for about 100 feet as i kept biking to the store.  The poo land-mines were right in front of local bait shop and boat rental and not far from a small city park and swimming beach and as i kept biking to the store, i had to warn people, who i encountered on the path ahead, of the dog crap that lay in store for them, much like Paul Revere's warnings of "the British are coming, the British are coming" only "dog crap ahead, dog crap ahead."   😞    On my way back from the store, i encountered a big, tall shirtless young guy,  probably in his mid 20's and as dumb as anything, jogging on the path, oblivious to everything and with his giant pit bull and no bags for crap........ f#@%......... there are a lot of people who use the path-  women walkers, joggers, people pushing strollers, other bikers (there were already bike tread marks through some of the poo on my return trip home)  so i called the city maintenance department to have them send out someone to wash off the dog crap and after explaining the situation twice, my call gets transferred twice, before someone tells me i am going to be put through to emergency dispatch to make a report with the police.    911 for dog poop?    Forget it. let the rain wash it away. ******   I had come across piles of poo in the same exact place earlier in the spring......It was hard to believe a person could be that thoughtless, but it happened.......

 

At a golf course, two years back, while out looking for balls (this was the same course with the creek that i fish balls out of. it turns into a city park in the off season), as i was taking a lunch break, a woman and her dog, who was off-leash, approached me from the other side of the creek.  I had a hunk of summer sausage that i flung frisbee style over the 20 foot wide creek to the dog, who snapped it up. The woman admonished me, saying " i would appreciate it if you wouldn't do that, i am trying not to teach him to be a beggar."    Fine. i am sure he probably eats dry dog food out of a bowl in your house most days and has to be let out if he wants to use the bathroom. Four years ago, at the lake by my apartment, i saw a older guy trying to give his dog a bath by pushing his dog's head underwater. ugh. motto of this story. don't be a dumbass to your pet. or your neighbors.

 

Derek

[Elyssa143]

@Rosetta

Thank you so much. I just saw this I guess I dont get the notifications.  How come you say unless a moderator suggests something? There is no way hell on earth I would take another pysch drug this is the secone time i am fighting for my life because of them and I tried theyre other meds while polydrugged in the pysch ward. The only way for me is through as painful as it has been. Thank you so much for being there for me. And no chance of me doing anything to aggravate my nervous system i dont drink never really did and i really try to take care of myself. I am working on realizing these are normal feelings and thoughts for this situation and trying to not let them scare me as much. I am definitely seeing improvements its judt still scary as it is so slow and painful and i still have some really scary feelings this far out. But apparently thats "normal" . My brain tells me im worse than others and these symptoms and up and down are permanent.  Which im sure many people feel the same way. I am so glad you are much better it really is so nice to see. Im praying hard this year brings much more healing i need it. Although things are better. Thanks again. Look forward to hearing back!

[Rosetta]

Oh, I say that because the moderators know things I don’t.  There are exceptions to every rule. 

 

I agree that after 19 months I can’t think

of a good reason you would take anything, but I have been through some very, very hard times, and there were times when I would have been sorely tempted if a doctor had offered me a way out.  It happens.  

 

People get tired and scared.  Some waves are worse than others.  Doctors prescribe.  That’s what they do.  They don’t investigate.  They don’t look for reasons not to prescribe something unless it’s listed in their checklists, and they have no idea that ADWD is a contraindication to many, many drugs.  They don’t know that tiny doses have strong effects on us — devastating effects. They don’t know ADWD syndrome exists.  They think problems stemming from AD dependence last only a few weeks.  

 

If you are offered anything it is best to run it up the flagpole on SA.  Look it up here.  Ask about it.  Even if it’s not a psych drug.

You can search here by using an outside search engine such as Google and

typing, for example  “survivingantidepressants Cipro”

So, if you are allergic to penicillin, the doctor might give you a fluoroquinolone such as Cipro that could be dangerous (for anyone) especially for those of us in ADWD.  We don’t need more assaults to our systems.

 

 Doctors are incredulous that we soldier on drug free because they have absolutely no idea what is happening to us.  They see the drugs as solutions, not problems, and they prescribe at doses way too high for our sensitive nervous systems.  They are unaware of the nature of this syndrome.  They are unaware of the risks of adding more drugs.  That can compound the “kindling” effect.  

 

The rare doctor who is informed has a couple of options for extreme situations that have to be used very, very carefully, but the chances of finding a doctor that won’t harm you is remote.  

 

You know about benzo addiction, but you may be shocked to hear it’s the most common treatment for ADWD.  With good reason, especially for akathisia, but the problem is that the doctors do not know how to use it properly.  Usually, you get what I got:  a prescription for Xanax at a high dose and insistence that I take it every single day!!!  She even forced me to sign a document promising that I would take 1,5 mg every day.  That’s, in fact, why I quit Xanax.  She tripled my dose — a dose I had been taking every three days to avoid addiction — and REQUIRED me to become addicted!!!  It’s absolutely nuts.  She didn’t check to see if I was addicted because she mistook the symptoms of ADWD for the symptoms of benzo addiction.  Never mind the fact that she did not meet with me personally.  She instructed her PA to give me the prescription as the PA shuffled back and forth between the doctor and my exam room!!

 

You may have doubts at some point, but 99% of the time knuckling through is the right course of action.  I had the support to knuckle through.  I hope you do, too.

[Elyssa143]

@Rosetta

I definitely have the support to white knuckle through. Its already been absolute hell. Its been so horrific.  I couldnt and wouldnt be able to take another medicine. I never took any sort of pharmaceuticals until i was in my early 20's. I was raised all organic with homeopathic. Im extremely sensitive. Ive tried antibiotics and reacted poorly im not one to ever go to the doctor for things actually unless its for more natural stuff which is why im aggravated that i ended up in this situation again. I dont trust them anymore anyway. So meds are never another option. I do struggle it has been and still is extremely tough but it is better. I just need it to continue.  I need the scary suicidal stuff to go away as well. I pray in time it does. Thank you for being there for me. I do hope your feeling ok today!

[Altostrata]

Rosetta mentioned exercise -- are you getting daily gentle exercise?

 

Has it been very hot where you live? Given it's so often sunny, perhaps you might avoid bright light, see if that helps.

[Rosetta]

Thinking of you.— Rosetta

[Elyssa143]

@Altostrata i dont actually exercis daily no but im constantly walking and moving due to puppies and dogs. But i should walk more daily. Also no, it has not been hot at all. Actually chilly for Florida.  I wish it was warmer. 😕 i have definitely had a "better month" but im not very good right now

[Altostrata]

Looking back over the last 6 months, would you say you're better or worse?

[Elyssa143]

@Altostrata 

Definitely better. But its still extremely hard to have the intrusive looping horrible thoughts and the chemical feeling of wanting to die. But it is less intense and i have much easier times. Im definitely more functional but thats hard in itself because my mental stuff is tough. Like I can do more but feel awful inside and have horrible thoughts. Does that make sense? I get scared im stuck like this this is my new normal and this isnt life. Its a good thing i am better right? It should continue? Thank you for all you do!

[Leo1983]

Thats me, i think is this my normal now and i have to use tools to cope with it. 

 

Well that would not be an option for me as i need to be better than this. 

[Altostrata]

Well, when we say recovery is very slow, gradual, and frustrating -- that's what we mean.

[Elyssa143]

@Altostrata i understand 😕 its very slow and painful but as long as I continue to improve ill be ok

[Altostrata]

Please post some photos of your puppies!

[Elyssa143]

@Altostrata  its not allowing me to do so. It says the files are too big? I may have to try from a regular computer 

[Altostrata]

Make your pics smaller.

[Rosetta]

@Elyssa143  Hi.  I’m copying the response to you that I put on my thread.

 

I know it’s really awful.  I saw that you posted something about mental akathisia.  Yep.  That seems like an appropriate name for it.  If doctors think aka has to be physical and a person has to be walking up and down the room constantly they are mistaken.  It has a very strong mental component I think.  Or if someone wants to come up with a new name for the mental part, fine.  The name mental aka works for me.  It’s Hell.  

 

The SI is the worst part.  Mine was just like yours.  Intrusive.  My brain tried to make sense of it — to come up with reasons for why I felt it.  If a feeling is that strong it must have a reason, right?  Wrong.  Now that I have perspective I think of it like a hallucination.  There’s no reason for it.  The brain is thinking on its own.  Just as the eyes don’t see apparitions and the ears don’t hear voices there is no reason for your SI except for the fact that the brain is malfunctioning.  Yes, of course, you feel terrible, your brain is torturing you in other ways, and maybe, most likely, you have physical issues from WD, too, but would they be, on their own, enough for SI? Probably not.  At least not as often.  Thank god it WILL go away!!!

 

Notice that I said my SI WAS.  It’s gone, and if it comes back I’ll stare it down again! I know it will go away.  I suppose you have heard of Stuart Dolin.  His wife is an activist now that he died because of akathisia.  Doctors die of it, too.  But remember you KNOW about it.  Those doctors didn’t!  Isn’t that shocking?!  They didn’t know it was medication induced.  They didn’t know it could continue after cessation of the medication nor that it will resolve.  That’s, in my opinion, what killed them.  They didn’t know that the nervous system must be treated very gently in order to recover and to avoid exacerbating the condition, either.  No new drugs.  They think they should try new drugs until one “works” (differential diagnosis such as on “House”).  That is exactly the wrong thing to use.  Differential diagnosis kills patients.  They don’t know that.  We do!!  We can protect ourselves now.

 

My experience was that knowing helped enormously.  SA tells us it will resolve.  Not when, of course.  No one can say.  The fact that you are seeing improvement means you are in the right course.  You will be very close to the last day of SI without having any idea that is true.  You will notice after several weeks that it has not occurred in a while.  Then it will come back and go away again.  Just like all WD symptoms.  One day, like me, you will say “Oh, it’s been a couple of months!  It’s true.  It’s going away!!”

 

I’m not saying it’s easy to live through but you can endure it, Elyssa.  It’s very hard.  No doubt.  My best advice: Distract yourself.  Watch tv or read or walk.  Walking is really the best.  Walking doesn’t only distract you.  It helps the nervous system heal.  If you have support, and you do, you are going to have an easier time.  A safe place to live, food, clothing, warmth . . . that’s all you need along with the knowledge to avoid increasing the disruption to your nervous system.  

 

We are the lucky ones because we found this website — because someone made this website and maintains it.  You will heal.  You just have to distract yourself from the aka, take it day by day, hour by hour, if necessary, until it slowly lessens.  I rarely have it, and if I do it’s very manageable.  It doesn’t involve SI now. I’m prepared that that could come back, but I know it will go away again.  That will be true for you someday.

 

The people who try a lot different things - supplements, new meds, changing dosages, missing doses, doubling up doses, that sort of thing — they don’t seem to do well.  You can’t miss a dose because you don’t take meds.   That’s cold comfort for a person who CT’d but still — it’s one less thing to try to manage in our state of being.  

 

Hang in there!! - 💖Rosetta

[Katy398]

Hi @Elyssa143I just read your response to @HappilyDerailed . 

@Rosetta what wonderful words of encouragement above.

I am 14months on zero after a FT/CT. The SI is horrible I really feel for you. It’s debilitating at times but everyone heals and I truely believe this. Distraction is the way it really is, no matter how long we just have to distract ourselves. I know exactly what you mean when you say you would never act but your brain thinks it. I’m exactly the same. My partner used to get very distressed if I ever verbalised anything and sometimes I did say,  I just want to die I have nothing to live for. When writing this I feel so sad for him and ashamed of myself for hurting him but it was where I was at and for some reason I just wanted to let those thoughts out and release them somehow. Anyway now when we were in a window moment  we have finally after 14 months resolved this.  I have learnt how to detach myself from the SI thoughts. I can now say I’m getting those terrible SI thoughts and I label them as a thought,  not a fact and my partner is able to accept them and provide me with some comfort.  SI is such a taboo subject We can never discuss them with a doctor. I feel relieved to be able to talk about it freely without judgement. I don’t know whether this is any help at all but I wanted to share it with you. 

On 2/14/2020 at 4:39 AM, Rosetta said:

there is no reason for your SI except for the fact that the brain is malfunctioning.  

These are such wise words Rosetta thank you. Whilst I don’t want to tempt fate or really talk about ‘time’ I have heard it said that the third year,  sees lots of healing. We will get through this Eliyssa we really will. K🧡

[Elyssa143]

@Katy398

Thank you so much for reaching out! Im sorry your experiencing this as well. Its truly awfu. I have two different things though, since the very beginning ive had suicidal intrusive images and thoughts.  Ruminating and awful thoughts. They were 24/7 for many months probably up till 18 months. Now they still come and are still just as uncomfortable and hard to live with. On top of the awful feeling of not wanting to live, a very uncomfortable feeling in my stomach. A hopeless dread type of feeling. I will also have the thought about life not being worth it which feels so true especially since i get no positive feelings or pleasure still. But the thoughts are not a 10 anymore neither are the feelings but they are still just as distressing and i get so worried i wont be able to do this much longer. Ill be 2 years next week. But it is better than last year but very discouraging to still have these symptoms as they are so scary and uncomfortable. But im sure everyone feels this way. Although i see alot of people say the suicidal stuff goes away quicker than that and it worries me that theres something else wrong.....im just scared and traumatized of the feelings and thoughts but agai. I am better. I just pray it continues to get better. How are you doing? I hope your doing ok!

[Daisygirlsk]

50 minutes ago, Elyssa143 said:

@Katy398

Thank you so much for reaching out! Im sorry your experiencing this as well. Its truly awfu. I have two different things though, since the very beginning ive had suicidal intrusive images and thoughts.  Ruminating and awful thoughts. They were 24/7 for many months probably up till 18 months. Now they still come and are still just as uncomfortable and hard to live with. On top of the awful feeling of not wanting to live, a very uncomfortable feeling in my stomach. A hopeless dread type of feeling. I will also have the thought about life not being worth it which feels so true especially since i get no positive feelings or pleasure still. But the thoughts are not a 10 anymore neither are the feelings but they are still just as distressing and i get so worried i wont be able to do this much longer. Ill be 2 years next week. But it is better than last year but very discouraging to still have these symptoms as they are so scary and uncomfortable. But im sure everyone feels this way. Although i see alot of people say the suicidal stuff goes away quicker than that and it worries me that theres something else wrong.....im just scared and traumatized of the feelings and thoughts but agai. I am better. I just pray it continues to get better. How are you doing? I hope your doing ok!

Hello Elyssa. We have a lot in common, my name is Melissa (close to yours lol) and I am also almost two years off. Intrusive and obsessive images were one of my first symptoms and I still have them most of the day. They are horrible. Mine arent about suicide but self harm which is just as bad. I'm so tired of it

[Elyssa143]

24 month update:

Today is 2 years since my withdrawl began. I am definitely much better & healing but I still struggle alot. I am much more functional and went back to raising my dogs in the Summer & that was really really hard. But it seems to have gotten a bit better since then. I still struggle with some dread in my chest, intrusive suicidal ideation, hopeless feeling, no positive emotions or feelings and feelings of not wanting to do this anymore/die. Although of course I do not want to die. The fear seems better too although still there. So yes I still have many of the same symptoms and the si stuff still really scares me but it is definitely not as intense and I do have easier times. Its hard to be positive and patient but sometimes I am able to speak positively to myself and remind myself its its withdrawl and it will go. I am very greatful i have made it this far although not really able to feel fhat feeling yet. Im also greatful for my dogs they give me so much to do during the day and keep me busy. My waves have never been as horrifically intense as my 18 month wave in September that was absolutely horrific. So i feel i have maybe turned a corner since then. I still have symptoms daily but some days withdrawl is a mild voice in the background. Of course as many others i wish i was further along by now. But its almost as if im just waiting for my number to be called. I do still need lots of reassurance and feel like i just cant do this anymore sometimes but it is better it is not the hell 24/7 that it was the first and second year. I truly hope that it will continue to improve. I still read success stories and know deep down it has to get better. I eat really well, get sunshine and im able to watch tv some days which is huge. The first 2 years tv was just on in the background as a coping technique. Not all the time can i follow it but i can most times. Also im not coping 24/7 either. But withdrawl is still front and center and my brain is still obsessed with it. And its still my life right now. But some days im able to feel more positive about there being an end to all of this! Even with the si, I think for the most part now I feel like no matter what I keep pushing even though very uncomfortable to have these feelings and thoughts and I couldnt live like this forever because I remember who I was before the year use of zoloft. So my brain remembers and knows this is not me. But all in all I am healing at a snails pace. I look forward to hearing from a few people. I am greatful for this site as well. Happy healing to everyone. 

[Rosetta]

Hi Elyssa, I hope you are doing ok. -Rosetta

[Rosetta]

Hi, Elyssa.  Thinking of you.

[Elyssa143]

@Rosetta 

hey! Thanks for thinking of me. I just replied to your post on your thread. I hope your doing ok. I’m 28 months out now. Definitely not in hell all the time but still really struggle. Has the suicidal or akasthia gotten better for u? I still struggle with these so bad. Feeling of life not being worth it. Dread. Just over all awfulness along with the intrusive si. Hopefully this stuff dies down soon for me. I’ll wait for a response on you post. Hugs

[Rosetta]

@Elyssa143 Yes, Elyssa.  The aka, SI, and the intrusive thoughts have all become infrequent.  Thank goodness! 

I’m at 41 months - 3 years, 5 months.  

 

Please don’t lose hope.  The timeline is completely different for everyone.  It’s very possible you will recover faster than I have.  

Life without aka is so different.  I have it during a wave, but it isn’t constant.  It manifests as a mental anxiety issue in the morning and as restless legs at the end of the day, and it’s generally pretty mild compared to before.  
 

I had a bad wave recently, and everything intensified, but I had only one or two days with brief periods of SI.  It wasn’t there all day, and it was mild except for about 1-2 hours on one day.  When it was gone, the wave started to improve.  Mental aka was the worst part of that wave.  Intrusive thoughts less so.
 

Now, I feel I’m living pretty well.  I would say that I’m having the same problems as people without WD have except that there is a fair amount of emotional scarring from the ordeal.  I’m aware that another wave will come, too.  I have a lot of things I have not maintained - friendships, my house, my physical health.  I think much of my unhappiness stems from those issues rather than active, mental WD symptoms themselves.

 

You will find some peace when you get to the point that you have longer periods between waves, Elyssa.  You will start to believe in recovery in a way you didn’t think possible.  Hang in there.  It is so worth it to keep going!

 

Each wave will get less intense over time.  You will have a few here and there that are more intense.  That is very demoralizing, but you have to remember that the next should be much less intense.  Some people call these the 1 year, 18 month, 2 year, or 3 year wave.  I think I just had a 3 1/2 year wave although it came early.  
 

You are probably having an 18 month wave.  When it’s over you will probably feel some relief for a while with less intense waves.

I’ll be thinking of you.

 

Rosetta

[Elyssa143]

@Rosetta I appreciate you always taking the time to write me and In such depth. Your writing is great. I am glad you are so much better and that you can differentiate that a lot of yours is just normal stuff vs the up and down of withdrawal. Can you describe the si? When I say si it’s this underlying chemical feeling of life not being worth it or wanting to die? Although I don’t it’s very uncomfortable. I absolutely hate it and it’s so traumatizing for me. Then I’ve had the suicidal intrusive horrible thoughts since day one. 28 months now. I don’t have windows per say I have ok days symptoms are less and manageable then harder days and really tough days. It’s like groundhogs day constantly. Rarely I can be so caught up in life I don’t think of withdrawal but it’s always there. My akasthia is inner restlessness makes me feel like I want to crawl out of my skin and die. It’s yucky. I hate all of this I do have other symptoms but there so minor compared to the mental stuff. I would love to get to a place where I was confident in recovery and my symptoms weren’t anywhere as intense I often am scared I won’t make it. This isn’t living it’s literally surviving and it’s awful. I’m tired and get scared I won’t be able to do it any longer  the suicidal stuff has been the worst and most tormenting to me but things are definitely not the hell they were at the beginning but I get scared I’m stuck or this is it for me? I couldn’t live forever like this. It’s so tough. I just want me back. To Atleast be more mentally stable and never question not living again and it’s all so Chemical. I get really discouraged because the stories I read and the people I talk to  the suicidal stuff for them goes earlier I feel like I’m really far out and still have it that I’m screwed. Ugh. Well enough negative. I hope u have a nice weekend hugs to you!

[Rosetta]

Elyssa,

 

I could have written that at one time.  It is very, very hard to live that way day after day.  I understand exactly what you are saying.  Someday, you will start to see the difference between windows and waves and between shallow waves and deep waves.  For now, it’s going to be hard to keep up hope, but please trust me, you will get better to the point that you start to see the hope.

Describing SI is hard when I’m not experiencing it.  It’s a feeling of deep despair and the thought that nothing will ever be ok again is a big part.  Constant terror was a large part of SI for me.  I no longer feel terror.  That is gone.  I sometimes feel afraid, but it’s not terror, and it passes quickly.  I’m not afraid to be alone; I’m not afraid to go out either.  I still have anticipatory anxiety if I have something to do.  Not all the time, but, to some degree or another, most of the times I have a commitments.
 

SI was so perplexing — maddeningly so.  I knew I didn’t want to die.  I was afraid I would die in various ways, but I was also afraid of being the cause of my own death.  This was so hard to understand, because I didn’t want to die. The fear that I would do that to myself was something I had never, ever thought possible.  Anytime I had depression before there was never outright fear of doing something I did not want to do!  I did not want to die, but the thought that I wanted to die was a very frequent intrusive thought.  
 

There were a few times I wanted to die when I had a particularly difficult day that my husband could not handle well, but most of the time what I wanted was for the emotional pain to end, and I saw no other way for that to happen.  There is another way, Elyssa!  You must believe me.    You cannot go around.  Going through is the only way, and it’s hard and awful and miserable, but you must see it as a viable way.  You must believe me when I say I am glad that I went through instead of around, because going around means there will never be any future.  I am living in that future, and it is not yet a full life, but I do feel pleasure now; I do feel joy; I do live. I just have periodic timeouts the timing of which I have no control.  I promise you, I am grateful for this life however disappointing it may be at times.  This morning I made muffin.  I can cook sometimes; I can enjoy a walk; I can enjoy my child.  

 

I think SI is caused by a combination of the brain being in an unnatural state AND the fact that you are “just surviving” while not experiencing any pleasure or enjoyment (anhedonia or worse).  This is happening because your brain is not operating properly in the wake of the drug.  The same is true of aka.  In fact, my belief is that aka causes suicidal thoughts independently of it causing restlessness or pacing or a vibrating feeling in the limbs.  This is based on having experienced it over and over and over for many years now.

 

You must never cut yourself off from your future, because your future is bright.  Do not let your brain tell you otherwise!  Our brains are constantly talking to us even when we don’t realize it.  I used to think this was something odd about me, but it’s a normal human occurrence.  What the brain says to us is what can help or hurt.  When we are in WD the brain says a lot of negative things.  The key is to distract yourself from your negative thoughts.  If you can turn your negative thoughts into less drastically negative thoughts that too will help.  Banish “always” and “never.“  All or nothing thinking is a huge part of depression and a huge part of WD.  Nothing is always or never true.  You know that.  Don’t let your malfunctioning brain tell you otherwise.  Talk back to it!
 

It’s maddening that this syndrome can’t be fixed by simply providing the drug again, but it’s true.  The “chemical” feeling comes from the fact that you can’t make sense of your thoughts and emotions, I would say, but there may be something more to it such as depersonalization.  It’s so bizarre.

 

I can see that you need validation that what you are feeling and experiencing is normal.  It IS normal for this state of PAWS (or dysautonomia) which we call withdrawal or prolonged withdrawal syndrome.  You aren’t an outlier, but it is never going to FEEL normal to you.  
 

It is absolutely logical to deduce that because you are not seeing improvement this must be permanent for you.  Because our experiences with every other illness or injury have shown us that healing happens within 20 months, we can’t wrap our minds around this syndrome.  I had all the same doubts as you do.  Those doubts sneak in during a bad wave, too.  Will I go back and forth between feeling normal and periodically declining into madness for the rest of my life?  I know the answer is “No,” but it’s still hard to remember that in a bad wave.  In a milder wave, I can remember it.
 

I have seen people write the opposite of “mental issues go away first” many times.  Instead, a lot of people say that they go last.  I think the truth is in between.  People focus most acutely on things that disturb them most, of course.  Some people have aka and some don’t or at least it’s a very mild aka. When aka goes, the most terrible emotional states will go.

I have seen no evidence that the longer the symptom lasts the more likely it is to be permanent.  All of us will heal.  ****I think that what causes very long periods of WD is re-injury.  This is my focus: avoiding re-injury.****

I decided long ago that being “re-injured” is the main way that people suffer WD that lasts a long time.  I combed through thread after thread on SA of all the people stating that they were having years of WD.  Almost every single one had either tried to reinstate the drug, tried a new drug or had made some unfortunate mistake by taking a drug or drinking alcohol.  Re-injury can happen with the use of over the counter drugs, alcohol, and of course, prescription drugs.  Steroids, adrenaline based numbing agents at the dentist, and alcohol seem to be the most common substances to prolong WD, in my opinion.  
 

Dysautonomia can be slight and easily correctable by our bodies or very deep.  It can take a long time to correct, but almost always the key is letting the body heal itself.  Once someone is in WD and outside the safe time period for reinstatement, I feel that avoiding re-injury is the best plan, and I believe it works 99% of the time.  This is what SA means by a harm reduction approach — for those who are tapering small reductions are advised and for everyone — in or off the AD — being very careful with what we put in our bodies is imperative.  (Reinstatement has a place for some people soon after quitting or reducing a drug.  That’s not a subject I’m addressing here.)
 

I made a lot of mistakes before I found SA.  I missed doses, I increased the AD too much, of course, and took Zanax also on the advice of the doctor.  I drank wine.  I quit Zoloft.  My nervous system was all ready severely compromised before I was prescribed Trazodone.  Taking new prescriptions caused further destabilization of my nervous system.  Finally, I quit all prescriptions at once, but since then, I have improved my health a lot by avoiding new prescriptions and alcohol, making sure the dentist gives me a non-Adrenalin numbing agent, and walking.  Walking is very important for everyone, and it seems to help unless I’m in a deep wave.  Maybe it helps then, but it seems as if it doesn’t.

 

You are doing the right things, Elyssa.  You are doing the right thing by taking no drugs.  That alone means you will heal.  I am living proof.

 

💜 Rosetta

[Rosetta]

Hi Elyssa,

 

I know this is a hard time for you.  Have you tried hot baths or showers?  I used to sit in a hot bath during akathisia.  I would watch Netflix on my iPad while I sat there. A heating pad on the shoulders could work, too.  You might need a cool drink during the Summer.  Not cold with ice, but cool.  
 

My husband was commenting the other day about how much my health has improved.  Yours will, too.  It’s very hard to endure aka, but you can do it.  The key is to distract yourself from it.  I know it seems impossible right now, but it will gradually lessen in intensity with each wave until it’s gone.  Right you don’t see the waves, but someday you will notice the difference between waves and troughs.  Hang in there, sweetie!

 

Rosetta

 

[Amira]

Hello @Elyssa143 i hope all is good. Sorry my english is not so good

 

i can totally relate to all of your symptoms i only found a few people who struggle with these symptoms and it made me very scared and discouarged, especially i read most of them healed by the second year. I am 24 months off and not yet recovered

 

i too struggle with inner aka, dread, 24/7 feeling of wanting to die even though i still want to live but my brain is telling me otherwise, i have thoughts of life is not worth it horrible hopelessness and the thought that i will be like this for the rest of my life and i will never heal. It is a horrible horrible way to live, day after day after day. Totally disconnected from the world and people, i cant feel any good emotions like love, joy, peace, comfort. I also have cognitive symptoms i cant make decisions, lost my creativity, confidence and wit.

 

I am defitntly getting better, i am also fortunate enought to have a relief of these symptoms for a few minutes, symptoms are now less intense than the first year( the first year was horrible)  i began to see some relief around 21 or 22 months mark. But the process is so slow that it is very discouarging 

 

 

It is sad to see someone else suffering like this, but it is also reassuring to know that we are not alone in this

 

[Elyssa143]

Almost 32 months into withdrawal and still really struggling. I’ve been in this wave since about October 13. It’s been extremely hard. I was having easier times and better days, never ever symptom free of course. But much better to where I could see a future or deal with the day to day symptoms. I still really struggle with Si, intrusive si, inner akasthia and inner dread feeling that brings on hopelessness and despair and makes me feel like I won’t make it and want to die (I do not want to die) but I get very scared and worried this is my life and I won’t get any better. The back and forth is so hard too. I’m wondering if my hormones are contributing, my period was short this month. I’ve changed my diet again and I’m taking magnesium which has helped with my period cramps, I take some b12 and iron too. I’m just at a loss, I’m raising my Frenchies and being as functional as possible I push myself too to be as normal as possible and yet mentally I still really struggle.  I still get very scared that I won’t make it either. It’s all very scary. Looking for any reassurance or positive help! Thanks everyone and healing vibes to everyone.

@Rosetta @FarmGirlWorks @Sheera