☼ Yogagirl38: My Zoloft experience with drug-induced parkinsonism, tardive dyskinesia, benign fasiculation

[Yogagirl38]

Hi all, my story is so very long but the short story is i was on zoloft 50 mg for 15 years (only drug i was ever on). I tried multiple times to get off but would get severe discontinuation syndrome each time so i thought i just had to stay on it for life. I will go into those symptoms if you ask.

 

Anyways about 4 years ago i developed benign fasiculations and resting tremor. It took seeing multiple docs and finally a second neurologist and he said this is common with zoloft. So i had to get off it but i was scared to death because of the severe discontinuation that i would compare to heroin withdrawal. So i was so scared i never went back to the doctor and thought maybe i can live with BFS and the tremor.

 

But then my neurological symptoms got worse and led to parkinsons which was drug induced and dyskinesia. The facial grimacing was way more annoying than the fasiculations and it affected my blood pressure too, thats how parkinsons works, it affects the autonomic system so i had bad orthostatic hypotension and that was dibilitating but somehow i pushed through. I had many more issues, if you ask i can write about them.

 

Anyways this time i was ready to get off zoloft so i go to the doctor and he says "wow you've been on it for 15 years" and i thought "WOW you idiot. Your office is the one who has been prescribing this to me all these years". They never once told me to make an appt if i hadnt been there in a few years, they just kept refilling it. They should require patients to have biyearly appts and check them for neurological signs and if the patient doesnt make an appt than they should not get a refill. I am very mad at my poor healthcare and management (total lack thereof) but again my story is so long i can write it if you ask.

 

Anyways my doc said to wean off over like 2 months. That was too fast so i did it on my on and weaned off 50 mg over a 6 month period and for the first time i did not get discontinuation syndrome! I was scared to death but i did it and was shocked i did not get discontinuation. Weaning that slow is the answer. I only had some mild things like some mood swings, swollen lymph nodes which always happens when i wean off for some reason, headaches, i can go into detail if you ask. My neurological disorders are also going away.

 

I am 20 days off zoloft and feel great and i would say my neurological issues are like 80% better and i hope to recover completely with time (i might have permanent damage).

 

Anyways i am posting because i am very angry at the healthcare community for their lack of knowledge on how zoloft, though rare, does cause dyskinesia, BFS, and parkinsonism. Docs do not seem to know to look for these signs and put a stop to it before irreversible damage occurs which is a disability. They are too freely handing out these meds to your average person with basic stress that can actually manage without meds like seeking CBT, meditation, yoga, qigong, etc. i am one of those type of people. Patients are never checked up on on these meds.

 

I know personally from working in gastroenterology for years that almost everyone is on anxiety or antidepressants and that to me is a crime because every single one of them are having unexplained problems with a lot of expensive negative testing and they are frustrated but no one is relaying it is the medication causing it and how imperitive it is to get off it.

 

I am against all these meds (unless the patient has true mental disorder like bipolar or is in a stage of suicidal ideation etc). I am just very angry. For me, to address that, i want and need to raise awareness but i feel no one would believe my story because it is so rare but i think more common than we know because it is being unreported and doctors dont know enough to spot tardive dyskinesia etc so it takes years.

 

Anyone else with a story like mine?

Edited July 20, 2016 by scallywag
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[downtongirl]

Wow!  Yogagirl38 you have been through a lot!  I am sorry that zoloft did that to you.  I am glad you are doing better though.  Did your neurologist prescribe you parkinson medications and if so are you taking those?

[PatriciaVP]

"I am against all these meds (unless the patient has true mental disorder like bipolar or is in a stage of suicidal ideation etc)"

 

Bipolar like every other diagnosis in the DSM is total BS made up by a bunch of people sitting in a fancy hotel categorizing human suffering into a bunch of illnesses so Big Pharma can make a butt load of money.

 

Studies have shown that over the long term even people who experience psychotic states fair better over the long term if they are never medicated, and more often than not, suicidal ideation is CAUSED by medications, not treated by them.

[Yogagirl38]

i'm not taking any medications and don't plan to, i think i just have to give it time but here is the story with that. So this started about 4 years ago. I weaned off zoloft too fast in like a 2 week period. Got the most severe discontinuation i ever got, lost 20 lbs in one month, diarrhea, nausea, confusion, felt like someone kept shooting a bullet in my head and things would go black (i guess thats a brain zap?) 3 hour long rolling panic attacks, flulike symptoms, and more.

 

I couldn't take it any more after a few weeks so i went back on zoloft and that immediately made the discontinuation syndrome stop but that's when the neurological disorders started. I think it was actually tardive dyskinesia is what was happening but i didnt tell my doctor. It started in my face. After 8 weeks of eye twitching i went to the eye doctor who said i had blepharospasm and he could shoot botox. I declined. But that was the first time i should have said i recently started up zoloft and that is one of the first common symptoms of dyskinesia.

 

Anyways the day that stopped i got nonstop palpitations in my heart, about 3 per minute, all day long. I went to cardiologist who said i was fine and to take propranolol. I took one pill then threw it out because it made my pulse and breathing too slow. Never reported that. The palps lasted 6 weeks and i have never had them again, but if you go on pfizer's website that is a zoloft side effect.

 

Anyways the day the palps stop i got fullblown fasiculations everywhere in my body nonstop all day long. A strange constant sensation like my cheek was being pulled back towards my ears and really strange sensation in my forehead when exposed to heat like cooking over the stove or grill so i learned to keep my forehead covered with my hand when i cooked because if not it would trigger bad twitching down the right side of my entire face. I also had this feeling of restlessness like my arms would explode (which i think is actually akethesia which is also on Pfizers website about zoloft).

 

Those were horrible times. Also my sleep was affected as in i would want to go to bed at 7 pm and i couldnt fight it, i would nod off in the middle of talking and i would wake up wide awake at 4:30 am every day wide awake (that is like a parkinsonism type thing with circadian rhythm disturbance). It was hell on earth. After 8 months of this i made an appt with a neurologist. His office was horrible but he seemed nice. I had hyperreflexia on exam and he said i had benign fasiculation syndrome and it should stop soon on its own. He did an EMG and it was normal.

 

He ordered MRI brain and cspine due to major family hx MS (father, aunt, 2 cousins all paternal side). when i scheduled the MRI the girl couldnt schedule it because it was coded for wrong facility. So i had to call the neuro office for them to correct it. The girl yelled on the phone and i exact quote said,"listen i worked down there at scheduling for years and those girls don't know what they are talking about! I'm nit fixing it cause its fine" in an angry viice. One of the secretaries i worked with heard the whole thing and we could not bekieve how unprofessional that was. So i called scheduling and they could not brlieve it either and they got their supervisor to call back on my behalf. The girl at the neurologist office called me bavk with the corrected code and apologized.

 

So anyways i go and get the MRI. I wait a weak then call the doctor for my results. He diesnt call me back. So then i call again and emailed through my patient portal and got no reply back. Luckily i worked in the hospital and had access to the system so i saw my results the day after it was done but i wanted to hear what the doctor had to say.

 

My results were normal other than a DVA in my brain which is no big deal and herniated discs and bulges in my neck which actually made sense be ause a few minths before that i had asked my famiky doc about neck problems i was having and they said oh ots probabky just stress, you are fine (and i kept saying its not stress, i feel fine, i am having shooting pain). Anyways i researched on my own physucal therapy to get rid of neck pain and injuries and did it on my own and was fine after 6 weeks, no more shooting nerve pain.

 

So after all that i learned to not trust or listen to any doctors because they don't care or they don't know and they dont listen. I was alone. I had to get better on my own. So i got into yoga. I got really good at it. This is what kept me going.

 

After another year though of still having fasiculations i decide i need to do something so i make an appt with a different neurologist. This guy said to me also i have BFS but i also had a tremor that I didn't know i had. He was the first person to say to me that he thinks the zoloft is causing it and i have two options. To stay on the zoloft and take another medication to help the tremor and fasics or to go off zoloft. I said it doesn't make sense to take another medication where i will prob get more side effects, it makes more sense to just go off the zoloft.

 

He looked at me and smiled and agreed. I think he wanted to say how bad this drug is but of course he can't as physicians have to be careful what they say to patients. So i go back home and got scared because i didnt want to go through discontinuation sundrome. I worked fulltime and dudnt have time to go through that. So i thought maybe i can just live with the tremor and BFS. But then it got worse which is when i started getting a really bad resting tremor, facial grimacing, orthostatic hypotension (i monitored my BP and pulse on my on and when it dropped to 80/50 with pulse in 120s i would be very faint). I started having nocturia and other signs. I had a weird bobble reflex in my hand that upon research that is a parkinsons reflex.

 

I just had to get off zoloft. So that brings this to last january. I made an appt with my family doc who i felt dismissed me as nothing (i actually have video of my tremors, spasms, facial grimacing to prove my case in case i ever decide to take it up, i might write a book actually). I said i am weaning off zoloft and he said "wow you been on it 15 years" and that really set me off that he dud not know because his office was the ones prescribing it.

 

So it took me 6 months to get off zoloft and now i am doing well and will never take another mind altering drug ever again. I also have very little faith in the entire medical community. They failed me greatly and were zero help. So no, i never took any meds for parkinsons because when i last saw the second neurologist that was the only time i saw him and i said i was going to just stop zoloft. Also, my symptoms got wirse after that and i felt so not listened to by doctors that i never saw a doctor to get an official diagnosis but i have video of some of my problems and upon research my symptoms, i believe, coincide with parkinsonism and dyskinesia, maybe even EPS. It is horrible what i went through

Edited August 29, 2016 by JanCarol
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[downtongirl]

You are a strong trooper!

[Yogagirl38]

Thank you but i have to give credit to yoga. It was the onky thing that kept me going. Without that and meditation and the qigong, I don't know what would have happened to me. For me, it saved my life

[Yogagirl38]

Yes, patriciavp i think a lot of people are wrongly diagnosed being bipolar. But a lot of people do have that and need medication so they don't hurt themselves or others and while i am not a fan of medication, in that case the benefits outweigh the risks

[Yogagirl38]

Thank you downtongirl! I figure the best way to deal with my anger towards the medical community is to educate through awareness. That would also save others from the hell i went through

[Yogagirl38]

Today i scrolled through some other posts people have posted and one thing i can say with certainty is that these drugs are NOT safe and we all sound so SIMILAR with the neurologic impairments we have suffered. And all of us seem to have gotten no help which is despicable. All of us with similar experiences. I just wanted to say yes you all will get better but you MUST wean off these medications SLOWLY. And just no that in my experience and knowing the pattern of tardive dyskinesias they seem to get worse before they get better, this also applies for tics in the EPS realm (extrapyramidial symptoms). Just remember while going through this, that this is NOT you so don't worry. This is what the drug is doing to you while your brain normalizes. But it will normalize. I would say we are more having EPS issues rather than fullblown tardive dyskinesia (i had facial grimacing and blepharospasm) but i wasnt sticking my tongue out of my mouth uncontrollably or anything like that. Anways here is what is happening:

[Yogagirl38]

What is happening that is causing these EPS tics, akethesia, fasiculations, tremors, dyskinesia, dystonias etc is the inhibitory effects of serotonin on dopamine neurotransmission within the badal ganglion system (this is a part of your brain) alters function in the striatum thus inducing parkinsons like features. But since it is not parkinsons disease it is parkinsonism which is different because it is drug induced and not neurodegenerative

[Yogagirl38]

I just can't how only a handful of physicians seem to know anything about this. But then again as i worked in healthcare, doctors know nothing of drugs except what the drug reps tell them and the protocols to follow. Doctors know the basic stuff but do not know all because they are not chemists. But the way healthcare is is disgraceful. I never want to work in healthcare again after seeing what i saw behind the scenes. Anyways, you all will get better but you all must get off these drugs. Report it to the FDA, too. I did.

[Yogagirl38]

By the way im on my phone and the autocorrecting is changing a lot of my words and mispelling a lot of things lol ????

[SquirrellyGirl]

Hello Yogagirl, welcome to SA!

 

I'm so glad that you are feeling so much better and the physical symptoms are diminishing.  You are off for a relatively short period of time, and may be in the "honeymoon" phase, a window before a wave hits.  You tapered much slower than your doc suggested but much faster than the 10% method we recommend here:  Why taper by 10% of my dosage?

 

Hopefully, things will continue to stay fine, but having been on for so long, experience shows us here on SA that long timers like you and me usually don't get away with "fast" tapers scott free.  So, I will provide you with some links to read to hopefully prep you so that if you do hit a wave, you'll be prepared.

 

Introduction to AD Withdrawal Syndrome

About reinstating and stabilizing to reduce withdrawal symptoms

 

When a member has come off very recently, we usually suggest reinstating a small amount of the offending drug to alleviate withdrawal.  I gather you will want to continue as you are, and address it when and if it happens, though the other option is to go ahead and reinstate 1 mg or so and then do the 10% taper from there.  I know, seems silly, but when you've been through the ringer like I have, I've got to bring it up since I wish I'd known and taken the option before things got as bad as they did.

 

Since you'll probably be on the forum posting in other threads, it would be very helpful if you could put a brief summary of your story in your signature block, which appears below all your posts.  Instructions are here:  Please put your withdrawal history in your signature

 

Again, I'm glad you joined us!

SG

[AmyK]

Wow, what a story, Yogagirl. I am on the same drug, slowly slowly weaning, and I am schocked to hear about the symptoms you had. But yet not surprised. I am so happy you feel so much better now and I really hope you will recover fully. I do yoga too, and it has helped me so much, to calm the CNS, to focus and to ground myself.

Good for you that you took control of your situation by yourself, an inspiration!

I am as angry as you about all these antidepressants that are widely described... all the suffering they have created...one could just look at this forum.

Take care!

[WiggleIt]

Would you like to join a lawsuit since you came down with movement problems on the meds? I'm involved in a class action right now.

[WiggleIt]

The lawsuit is for people in the US who developed movement disorders from psych meds.

[WiggleIt]

My TD has been permanent and I do stick my tongue out of my head.

[Yogagirl38]

Thank you @Squirrellygirl I will do the paragraph:) and thank you for the info because I am in the early phases, just 21 days free. Today I feel the best I ever felt! When I wake up anymore, I actually feel refreshed. I never had that on Zoloft. Also on Zoloft ever since the neurological disorders started every morning I would wake up feeling really weird with a fast pulse and it was really annoying. That stopped when I weaned down to 25 mg 6 months ago and now being off Zoloft the refreshing feeling is even better!

[Yogagirl38]

WiggleIt I am so sorry you got it that bad, I also have a lot of your symptoms I read (but they are all going away or have greatly decreased). I have been thinking about a lawsuit. I don't know that I want to go through with it though. I kind of want to write a book, though. I have 3 videos documenting me (my other videos I erased and I wished I saved them). One video is of fasiculations of my mustache line area/lip. Another video is of the facial grimacing and blinking. Another video is of resting tremor. I will think about it and let you know. Also I read why it happens.

 

It happens because any SSRI affects serotonin which in turn affects dopamine transmission in the basal ganglia in the brain and it affects how the striatum works. It affects how the neuro receptors work. So for some people it makes them "not work" so then they can't reuptake dopamine basically so you get all this dopamine floating around and that is what causes this "Parkinsonism". It is classified as "EPS" meaning extra pyramidal symptoms

[Yogagirl38]

Thank you AmyK I am glad you found yoga too! Just hang in there because you can beat this!!! ❤️

[ang]

Hi Yogagirl,   well done!

 

Just to add here, before meds I was totally sane, never suicidal, never bipolar.               I was just a normal person who was depressed on day, just normal life issues................  then I was stupid enough to let my sister take me to a psychiatrist.

 

Prothiaden at high doses, I had seizures and mania,    they never blame the drug,  so I like everyone else that falls for this DSM rubbish, got diagnosed from depressed to bipolar.

On and off this drug dealers  (pharma)  DSM rubbish,  I could easily been diagnosed homicidal/ suicidal/ schizophrenic, binge eating disorder, anxiety disorder, aspergers,  ..........   the list seems to grow every year, just as the thickness of the psychiatric book expands, along with all the other side effects   from these pills.                 According to psychiatry, there are no side effects,  it all just gets labelled as another illness, and added to the list.

 

Anyhow, welcome................                    and the more you read here, the more you will realise how we all have been conned by these ""magic pills"...            I do hope you eventually write your book, and have the strength to sue the mongrels.

 

I hope your healing from these pills continues.                 And welcome!

[Yogagirl38]

Hi Ang I am so very sorry for what you went through! The thing is that it is normal to have some depression, some anxiety, etc because they are normal healthy responses to life. (We all know it is not normal when it turns into major depression and major anxiety where you can harm yourself or others or it gets bad enough that it interferes with daily life but most people can snap out of it with just therapy, reassurance, lifestyle change perhaps, a good loving support system, etc).

The thing that is troubling to me is that people with mild issues are right away pushed pills. That includes children and I Am totally against that. These children will likely never know a normal life and all they will know is a life on drugs and the harmful side effects will be perceived to them that that is just how life is.

That is awful what that psychiatrist did to you. You could have just been having a bad PMS time (us women understand ) but I believe you, you go in and n a rough patch and right away they push pills.

I am now 21 days free Zoloft. Doing really good. The one thing I love is that I can talk really good again. Zoloft made my jaw not work right and I would always have problems speaking which was really frustrating to me which then gave me a lot of anxiety like anticipatory anxiety about going out because talking became a struggle and not fun. And I am a big talker So this was devastating to me. Really held me back in many situations and many people, countless people always asked me if I was from California or down south because from talking I sounded like I had a southern accent. But no I am not southern, that was just me trying to articulate words and the since my jaw wouldn't work right that is how it came out.

 

Even one time a patient came in with his wife who worked as a speech pathologist in the hospital and actually asked me if I was from California and I said no I have never been there or anywhere in the south and that just blew her mind. She said but you have an accent. That was the Zoloft. I recorded myself yesterday and my speech sounds normal now. I notice I don't have to pause a lot and say "um" to try to keep going anymore, which I did not realize I did, but I did that a lot when I look at my older videos I did that I was talking like yoga or cooking videos.

Yesterday morning I had a weird experience and I am really proud of myself that I handled it. For the first time, I got a burning sensation down the right side of my face which is the affected side. Also my face turned bright red. My face stayed red for over an hour and felt like I had bad sunburn. It did scare me. I thought," oh no is some other dyskinesia going to start after I am doing so good?" But then I thought if so, then so be it. Will worrying stop it from happening? No. Then my sister stopped over and we hung out then went shopping and my face was fine all day after that episode in the morning. I just accepted it was probably just vasodilation due to coming off Zoloft and that is ok, it is just part of the process. I worked out some and also stopped at my friend's for an hour. I think I did really good yesterday. I just have to expect this stuff right now. Maybe forever, maybe not, only time will tell.

Thank you for welcoming me Ang and good luck to you too!!!

Edited August 29, 2016 by JanCarol
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[WiggleIt]

Hey, Yogagirl, there is a class action lawsuit being built in the US for people who have come down with movement problems from psych meds.  I called and spoke to the law firm and I'm moving forward on this.  I strongly feel that you should, too.  Here is the blurb that's circulating on social media:

"Have you come down with a movement disorder from psych meds, whether they were prescribed to you on-label OR off-label? Did you come down with permanent or temporary dystonia or dyskinesia or akathisia or myoclonus from psych meds?
 

Please join me and others who are working with a law firm to hold the pharma companies accountable.
 

Call Grisham and Barnhardt at 434-293-2939. Ask to speak with partner attorneys Tyler or Addison, or with their assistant/paralegal Bethany.
 

Please, we need ALL the victims to come forward, no matter how long ago this happened to you!" 

[Yogagirl38]

Thank you WiggleIt. Does this matter where you live though? Do you have to live near this law firm? I am now 24 days off zoloft and I feel great mentally. But physically still having problems. The most annoying being my tongue and mouth. I feel like my tongue is being pulled backwards and it makes it difficult to talk and to eat food. Also my doctor has been zero help so I don't feel i have anyone to turn to for help. My tongue issue started 5 days after stopping zoloft and has continued but it's not all day long but does last fir hours. For the rest of my body, i get total relief by doing qigong. Like several hours of relief. I read qigong is great for parkinsons and movement dusorders becayse it increases GABA in the brain and gets rid of free radicals. It def helps me. My facial grimacing i have not had in week or so. I still get fasiculations but i get total relief from them that continues for several hours after qigong. Last night i had resting tremors which i have not had in like 3-4 weeks but only had it on my left side. Sound familiar or any experience with that?

[AliG]

Yogagirl.  I hope you feel that you can turn to us for help, even if you don't have much other support elsewhere. Have you given any thought to reinstating?  I would think about it now as there will come a time very soon that the window will close and it will become more problematic. I know you're doing well now , but it's early days and it can turn quite suddenly.  Just something to think about. 

Ali

[Yogagirl38]

Thank you AliG yes you guys are amazing! I never want to start up medication because I read for drug induced dyskinesias that's the worst thing you can do. I would like to find a professional though that deals with these disorders because I have questions like

1. What are the chances of me getting worse

2. What are the chances of this completely go away with time

3. Is this really from Zoloft or was this all coincidental and it is not the Zoloft but some other disease process (but I think it's from the Zoloft but only question that because all immediate and outer family members either have MS or an autoimmune disease (I am the only healthy one

I want to be validated and acknowledged because my doctor just blew me off like this was nothing so I feel I won't ever go back there again (I have video documenting my disorder).

[Yogagirl38]

I really hope this just goes away with time. I actually feel awesome mentally but physically I feel like it's a real disability. I can still do things that normal people can do with mild difficulty and usually have to get creative on being able to do things. That can be very frustrating

[AliG]

Yogagirl.  This will indeed go away with time , however it is up to you how that time is spent. I'm 2 years 2 months off C/T  and I would never want anybody to go through what I have been through..

1. Chances of getting worse - it's hard to say.

2. Going away with time - yes, but varies for everyone. Can take quite a while. Perhaps 2 years average , but can go a lot higher.

3. My best guess is the Zoloft. W/D often mimics auto - immune disorders.

 

You are validated and acknowledged here. We all understand and empathize. While willpower is great and it's what I did , there can possibly  be an easier path.

Have a think about it . There is no guarantee but it's worth a thought .

Ali

[Yogagirl38]

Thank you so much all! Just wanted to give an update because writing is very therapeutic to me because I don't have anyone to talk to about this. I am now 26 days free of zoloft. I emailed the neurologist i saw one year ago and explained my symptoms and they said i should make an appt with the movement disorder/parkinsons specialty team. They treat parkinsons and parkinsonism, TD, dystonias, tics, and the more serious movement disorders like Huntington's. So i think i will do that because i want to get an official diagnosis so then i can raise awareness to physicians to not prescribe zoloft and other meds in that realm without first warning the patient of what can happen and also i want physicians to know to not prescribe these meds unless there patient is following up. And, the physucians MUST assess neurological function at every visit particularly paying close attention to eye and mouth area and muscle twitching.

 

Anyways, 3 days ago, i started to feel defeated. I had hoped my neurological disorders would just go away. But my tongue kept feeling like it was being pulled backwards along with weakness in my jaw that was making it troublesome to eat and speak. Also, i had a bad resting tremor happen only once but that had not happened for 3 weeks. No facial grimacing, but a lot of twitching (fasiculations in my face). I was not sleeping good because of this hip bursitis type hip pain that makes my legs feel like they need to jump all night long (which i had for a year when my issues first started 4 years ago and again doctors were zero help so on my own i researched physical therapy for the hips which then led to researching yoga and how to fix the hips, so i started my own hip routine 30 minutes every day, sometimes twice a day, and i fixed my hips by doing that with just mild weakness). Anyways story getting too long...

 

Anyways, for the past now 3 days i thought i have to do qigong and get back into it. It is especially good for movement disorders. IT HELPED me so MuCH that as of last night something changed and i feel really good, almost waiting for my neurological symptoms to act up, but they aren't. The first day i did qigong 3 days ago i had total releif of muscle twitching for 3 hours after i did it. The only thing it did not help was my tongue, jaw, and twitching of face. Also my hips at night. So yesterday along with the qigong i did my old yoga hip routine that i had not done in nearly 2 months. And guess what? Last night I SLEPT WITHOUT having RESTLESS LEGS. The routine i made up takes pressure off the nerves exiting the hips and increases flexibility and stimulates circulation. The qigong and yoga together are making me not have any symptoms. Today i have had none so far. I wonder if the qigong and yoga is just keeping symptoms at bay OR if I am now at the point where my symptoms will just start to go away and i am free of this nightmare. I am only having mild twitching around my eye and that's it.

 

I did read qigong is particularly helpful for movement disorders because it increases GABA in the brain, gets rid of free radicals (free radicals build up in the brains of people with movement disorders), promotes circulation which increases muscle repair because you get more oxygen to all body parts.

 

So these are just some things i am pondering today lol

[brassmonkey]

Hi yogagirl-- the yoga hip routine sound very interesting. I've been having trouble with mine for years. Would you mind telling us more about it?

[Yogagirl38]

Hi all! The hip routine is hard to explain but the best routines are on youtube, type in yoga physical therapy for hip bursitis and spinal stenosis. All kinds of great stretches you will find.

[Yogagirl38]

Wanted to give an update. To summarize, i quit zoloft July 1, 2016 after being on 50 mg once per day for 15 years. I am doing great! I did not get discontinuation syndrome because i weaned over 6 months to get off. 3 1/2 years ago and also other times i would try to get off too quickly and would always get discontinuation sundrome (which I don't think doctors think is real and don't believe the severity of it). Anyways throughout all this yes I am about to doctor bash. I think they all suck. They are pompous idiots.

Anyways recently i went to a movement disorder neurologist and he was a total ass. He diagnosed me with Hemifacial Spasm. At first he said he was thinking Tardive Dyskinesia/Dystonia but he said no not that because you don't get better from that. He did not want to say zoloft caused all this, he said getting dystonia is so rare that it's just not possible and "oh i would have to read the literature on that" so he did not know "all" and he should not act like it. So then he pulls up the physican desk reference which anyone can pull up and it states it causes dystonia.

 

He rushed the entire appointment and pulled tricks the docs i used to work with also did when they wanted to get out early because of having to dictate the letter and what is required with computer work with each patient. He did not listen to my whole story nor did he listen to family history or anything else so i had to talk over him to tell him about all the MS in my family. He kept on messing up the time frame of my issues because i had to keep correcting him.

 

Then, also when i first walked in he formed an opinion before even talking to me.

 

He said so you have an anxiety disorder? And i said NO the zoloft caused intense anxiety (because i had what i believe was akathisia because i no longer have it and that was an awful feeling. But we never got into that. He just didn't want to hear anything i had to say. I don't think he believed me until i showed him video of my face. I think he was surprised because he did not want to believe me.

 

Anyways, dude was a complete ass. Coincidentally he was the doctor who diagnosed my dad initially with MS 40 years ago and my mother did not like this doctor and said same thing, poor bedside manner. He just did not want to admit that zoloft caused what happened to me, yet he said do not ever take another drug that is an SSRI ever again. He prob didn't want to say zoloft because of a lawsuit fear.

 

So i remained polite with him but really have no respect or value of his opinion but the finaldiagnosis was Hemifacial Spasm and he just didn't even want to hear about anything else so that was that and i left.

Edited August 29, 2016 by JanCarol
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[Yogagirl38]

Anyways, my face is really good now with no visible spasms. However i think it could start to spasm if i sat at a computer too long (bright lighting is a trigger for me). Even though no one can see the spasm now, i always feel twitching down the right side of my face and sometimes some stronger contractions but that i think i will have forever, it flares up and then other times it is very minor. Overall i have it pretty good compared to people with severe HFS.

A lot of weird issues in the rest of my body are much better, too. So therefore it was the zoloft to me in my opinion. So screw the idiot doctors lol.

I can say I am completely free of zoloft. Never thought I would be able to say that but I did it. It can be done!!!

[AliG]

Yogagirl.  I love your attitude !    I'm glad your face is recovering and I think there is every reason to believe that perhaps it will totally heal in the future, given time. You have obviously come a long way already in your journey but I'm sure there are more improvements on the horizon. I think positivity is "key" in this process and you seem to have an abundance of that which is perhaps why you have come so far and seem to be able to rise above the obstacles that you've encountered along the way .

Ali

[Yogagirl38]

Thank you AliG! Yes we have all experienced quite a journey. Attitude really helps. There is hope out there. I know this is cliche, but whoever said "keep the faith" was right on!!! ✌????️✌????✌????

[Yogagirl38]

Hi! I am going to make this short and simple: You can get off Zoloft as long as you wean slow. Wean fast as in take only 4 weeks to get off or if you do cold turkey, be prepared to experience what heroin withdrawal feels like, and it lasts for a good 4 weeks of daily sickness and mental insanity, for real. So don't do that. Even if you feel ok, wait to wean.

 

I was on 50 mg Zoloft for 15 years. I attempted several times to get off throughout the years and would stupidly do it in less than 3 or 4 weeks so hell would ensue and I would have to go back on it because it gets so bad you can't even drive a car.

 

What do I mean by hell would ensue? Diarrhea, weight loss of 20 lbs in a month due to being unable to eat (at one point I was forcing myself to eat 2 Popsicles a day because the nausea is so bad), dehydration secondary to being unable to eat, severe muscle fatigue and weakness like you have the flu, severe pain in ear and jaw always happened to me and I notice others also complain of that, it is like a fullness or ringing, myoclonic jerks and restless legs, rolling 3 hour long panic attacks, dizziness, confusion and cognitive impairment, feeling like a bullet gets shot through your head several times a day, fainting due to probably vasodilation, flushing, burning... It is so intense and these symptoms go on and on for weeks until you go back on Zoloft. BUT THAT DOES NOT HAPPEN when you wean slow which I advise because that withdrawal is so bad that you develop what I would say is PTSD from that and you don't want that so wean slow to avoid that.

 

I took 6 months to wean down. My doctor told me no one should take less than 8 weeks to get off and there is no set time frame, it can take a year or longer.

 

So this time I took 6 months to wean and FINALLY I did not get discontinuation syndrome yahoo! Weeks 2-4 after quitting Zoloft were unpleasant but they were manageable and not like the hell I posted above. Once you get to week 6 after quitting you really feel totally normal like how you felt before taking Zoloft. It feels great. The battle was won!

 

I would say if you work save vacation time for this process and take week 2 1/2 to week 3 1/2 off work because that week is a little tough especially with confusion and near fainting due to the orthostatic hypotension that I believe happens because of the probably vasodilation that occurs from Zoloft.

 

Why did I quit? Because Zoloft caused me to have movement disorders. One neurologist said the Zoloft was causing the benign fasiculations and tremor. Another neurologist that specializes in movement disorders diagnosed me with hemifacial spasm and he did not know enough about Zoloft but said "at first I would say tardive dyskinesia or dystonia but that does not get better, it stays bad. The likelihood of Zoloft causing it is so rare I don't agree" then he says he would "have to read more literature on that" but CLINICALLY then why am I getting better? Because it was the Zoloft, duh! He did say to never take an SSRI ever again. On Pfizer website it states Zoloft causes "dystonia, tremor, hyperreflexia, palpitations, akithisia" and I had all that. Even had facial grimacing. Now the only problem I have is nerve irritation in my face but everything else went away and I no longer have facial grimacing. Anyways I was diagnosed with hemifacial spasm just by examination but then why did the spasms stop? That does not just come and go. I think it was the Zoloft. I also had difficulty breathing and muscle tightness in hips while on Zoloft that affected my walking and that is all gone. I think docs do not want to admit Zoloft caused it for liability reasons and also that they just don't know.

 

Anyways I am on week 7 and I am doing great. Feel normal like how I felt before taking Zoloft except o actually feel better because now I have life experience to assist me. Back when I took Zoloft I was young, dumb, sleep deprived, partied too much... So yeah I was stressed cause of my lifestyle but now I am an adult and a pretty awesome person.

 

Here is what to expect when you wean properly off Zoloft and quit:
Week 1: the first 4 1/2 days you feel better than you ever felt and feel like your creativeness comes back. In the back of your head though you do fear discontinuation syndrome. Day 5 is when you start to feel a little "off". For me day 5, I started to feel a little blank in my mind and my tongue and mouth wouldn't work right which affected my speech. I think also I didn't have any appetite days 5-8 or so. I never experienced any nausea or anything, I just didn't have any urge to eat.

 

Week 2: days 6 to 14 is the increased anxiety period. This week you will want to stay home and not really be around people, but being around people you are comfortable with is helpful for support. This week you get confusion and difficulty speaking as in stuttering and mixing up your words a lot and hyper aware of things. You also start to wonder "oh no, is this how I am without Zoloft? Will I have this anxiety forever" the answer is no. This is your brain going back to normal and getting used to handling dopamine and serotonin again. Your neuro receptors are trying to figure out how to work again.

 

Week 3: the severe rage anger week. This week rage is so powerful you can easily flip or hurt someone. Stay away from texting and social media this week because it's like you could easily type something really hurtful and on purpose too. Do things to keep busy this week like walking, gardening, and taking nice long hot baths. I have never been an angry person in my life ever and this week I scared myself at how rageful I was so when it started getting out of control I would remove myself, take a bath and practiced breathing to stop myself before the point of no return. Same exact thing as if you watch Cesar Milan the dog whisperer. You need to do something to snap out of it before it starts in the beginning. Cause once it reaches a heightened state, snapping out of it is impossible. This rage only lasts about 5 days and never returns. Also during this week I had a lot of near passing out moments from my blood pressure dropping to 80/50s and my pulse would accelerate to 120s, this is normal and does not happen again after this week. You also experience burning and flushing. Pfizer lists Zoloft causes flushing from vasodilation I think I read. So this week you will need to eat more salt, lay flat with feet elevated, avoid heat. You probably will jerk every night as you fall asleep.

 

Week 4: the physical symptoms pretty much all go away and you start to feel normal with less confusion but not totally normal and this lasts throughout week 5. You probably will feel depressed that you are not totally normal feeling and you wonder "is this who I am because I really don't like it, maybe I should be on medication". This feeling lasts for two weeks but then goes away. This is all part of the process and NO you do not need medication. Your brain is still adjusting. This week is important to exercise.

 

Week 6: finally you feel many glimpses of feeling normal.

By week 6 1/2 to 7: you are totally normal again.

Good luck everyone!

Edited August 25, 2016 by JanCarol
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