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

[Yogagirl38]

Oh just wanted to clarify also if you read this from the beginning the timeline is a little confusing because i think this is 2 posts combined into one... 

what happened was is i was on zoloft 50 mg i think a little over 15 years. I had gone off it when i was pregnant with my daughter 14 yrs ago and i was vomiting the whole pregnancy and “off” because i had to go off it so quickly... the pregnancy of course was im sure making me unwell but i think the majority of it and dizzyness was from having to discontinue zoloft so quickly. After my daughter was born, I was still having balance issues and other physical issues so i went back on zoloft and all those feelings and physical issues were disappeared in like 5 days. So i thought well i just need to be on zoloft for life. Literally i thought it broke my brain and now i cant function without it. Then several years later, i think on 2 different occasions again i tried to get off it. One time i did cold turkey and got really sick, brain zaps, etc, so i went back on and again was totally normal again. Then i went back off it again over a 4 week period a couple years later and was fine the first 7 days or so and then all hell broke loss. This is when i had the most severe discontinuation, the brain zaps, only able to force down a couple popsicles a day if that, lost 20 lbs in one month because I literally could not eat, i couldnt drive my car, couldnt focus, and had this insane feeling nonstop that my arms and legs were exploding yet i was so fatigued i felt like i was dead and couldnt move... my brain was so messed up and that created severe anxiety from such a traumatic experience I definitely had PTSD from that but i recovered  from the PTSD aspect after about a year. Anyways i think i lasted about 4 weeks off the zoloft, then went back on it and got instant relief. That time was so bad i couldnt work or care for my children and my husband was visibly really upset... i was dying literally. So i got instant relief when i went back on zoloft, but then 8 weeks after that is when the dystonia and akathisia started and i lived with that for 5 years because i was scared to death of discontinuation. But then the movement issues got worse so i saw a 2nd neurologist and he said it’s the zoloft and my options were “take another medication to mask the symptoms from zoloft or just get off zoloft” so it doesn’t make sense to get on the more meds roller coaster so i knew i just had to get off zoloft. So i weaned off after 6 months time. I had instant relief of the blepharospasm, benign faiculations, akithisia. I think it was during the 3 months before i quit i had gotten hemifacial spasm and that lasted 4 weeks. When i quit the zoloft, i did not get discontinuation syndrome. I felt pretty good with definite mild discomfort... but definitely bearable, but then the tardive dystonia started where I remember my foot would kick off the pedal when i tried to drive for about 4 weeks, my hands were doing weird things. I remember that’s when my eye on the side that the hemifacial spasm stopped, my eye “drooped” and i had a constant feeling like fullness in my ear and my balance always felt off. I did go to the dr because i looked similar to how people look when they recover from a stroke and he ordered another MRI but all was good so he had no answer as to why... he honestly flat out told me he had no idea what was happening to me and whatever it was was rare and that the docs in the county just arent experienced and that i need to only see doctors in the city because they are more equipped so he coded me as “movement disorder” I was just fed up and thought i got this far, ive been on my own, i am in charge of me and im sick of inexperienced physicians. Also wanted to say at one point i thought maybe something was wrong with me so i went to a psychiatrist and she said there was nothing wrong with me at all; the problem was the poor medical care I was getting and no one seems to be listening because i have such a bubbly personality. I don’t like negativity so even when I don’t feel good, i see no reason in bringing others down so i joke around a lot. She was right. I had some of the worst care from multiple doctors. I did not feel listened to not even once. So anyways im

all good after a while other than the droopy eye, and i went to florida and had an allergic reaction to some fruit where my throat swelled up... i thought let me take a prilosec because maybe i was having some acid backwash to let my throat heal and bam! One pill triggered a dystonic flare... my 2nd flareup of lingual dystonia and that lasted nearly a year before it disappeared. I just remembered also with my ear fullness, the dr thought well maybe it is a eustachian tube issue and he prescribed fludrocortisone... i started getting neck spasms so i stopped that after like 3 days ... i attempted that again a few months later and again severe neck spasms like my neck was being pulled and it hurt (i think that was some type of neck dystonia) i also was hallucinating from fludrocortisone where i kept seeing purple blobs everywhere.  Also i had taken a pseudophedrine and that flared up the resting head tremor for a few months... anyways so i did go back to see a neurologist and he told me i am extremely sensitive so god forbid i ever need to be administered medication for something to have benedryl on hand because that can stop a dystonic flare. Luckily now i am completely healed and have been in so long i just don’t even remember but im gonna guess ive been symptom free for a year. Zoloft did permanently damage my brain in the aspect of that i am predisposed to developing dystonia from many medications (but i dont take anything and dont feel the need to take anything... i don’t even get headaches any more) My eye palsy disappeared also and no more fullness in my ear, my thinking is clear, zero anxiety, never had any issues with depression, no more movement disorders of any kind. Anyways i have been feeling on top of the world, totally normal, and better than who i was before i even started zoloft . Also wanted to mention i was iron deficient anemic before i went on zoloft and that was probably causing me distress... so like the dr should have never given zoloft to me in the first place, he should have asked about my diet and corrected deficiencies that were probably causing all my distress, but the obgyn was treating the anemia and not my family doctor so see this is what happens which is a problem... too many physicians treating different things and they need to collaborate better. My fatigue was from anemia back then, not “stress” and i was partying too much back then and not eating and probably hypoglycemic. Also during that whole 15 year period i was never checked up, i just kept getting refills without needing a checkup. They would give me a year’s worth of refills and when that year was up, id just call in and get another year. When i went to tell the doctor i had been on zoloft for 15 years he didn’t even know and said “Wow you’ve been on it that long”. Nice. Love how they check up on patient charts and their histories. 

 

Anyways this is too long and becoming a book haha and I actually tried to keep it as short as possible but that is a better explanation of the timeline. There’s so much more but it literally is getting too long. I am completely fine now though, symptom free for a year. Better than ever. Hope this timeline made things more understandable. It was really scary for a long time for me... I didn’t know if my driver’s license would be taken away when my foot was acting up, i had to sit down if i was holding someone’s baby because my hand would just drop things with no warning... there were a lot of unknowns. The scariest was the akathisia. I don’t know how i lived with that for 5 years. I had to constantly be moving. I used to work out as hard as i could all day to make myself really fatigued so that i could be still. That was probably the worst. That and the lingual dystonia because it was hard to get my mouth to work right to talk. 

 

Anyways i got thru that hell and u guys can to!!! Good luck to all!!! 

[Yogagirl38]

Hi all! Wanted to give helpful advice on what has not just worked for me, but a lot of other people that have also tried methods I researched and applied. These methods may not be for you, and may not work for you. 

 

So once you recover from the physical aspects of what happens after discontinuation, and your brain has neurochemically returned to normal, you are still left with an anticipatory learned behavior of whatever it was that you were fearful of. You are somewhat similar to someone coming out of a coma, that needs to learn how to walk and talk again. This analogy is a little far-fetched, but you get the drift; you have to instill new ways of how you think about things and how you approach things. You must also accept that this traumatic experience happened to you, and you need to let go of it and the anger you probably have, so that you can move on. Acceptance is the final stage to regain your “freedom”. When you hit that, you are fully recovered.

 

I have successfully been off zoloft 3 years or so. I did have 2 dystonic flares after I discontinued zoloft, from a prilosec pill, and a pseudofed allergy pill. I also started getting dystonia from a fludrocortisone nasal medication. That was all early on after the discontinuation... but I have been symptom free for a year. I would have been symptom free for 2 1/2 years if it not for the reactions to those seemingly harmless other meds (I am just a rare case of someone that reacts to these things). The brain sees prilosec as “melatonin”... which is bad for people with or history of dystonia, because you can’t take anything that can alter melatonin or seratonin levels once you have had dystonia. Off label, some PPIs like prilosec are actually even used for sleep disorders. 

 

So here is how to heal:

 

1. Read about the “pink elephant theory”. This is a great tool to help you redirect run-on and negative thoughts. It works. This allows you to re-wire your brain essentially, so you actually don’t get run-on thoughts any longer. I used to get run on thoughts several times a minute and now I get none, and no longer need to use this, but it is always there god forbid something pops up in the future.

 

2. Be honest with yourself. What are you fearful of most. Whatever that is, face it. Expose yourself little by little. A big thing for me after i was healed after discontinuation of zoloft, about a few months after discontinuation, was doing normal errands like waiting in line at the deli to give my order, or to go shopping in public. Zoloft was my crutch, and I had to show myself that I can do anything and I don’t need that crutch, which while on zoloft, I fooled myself that I needed that to be confident. I did not. Expose yourself to situations you have control of, like going to a store to expose yourself but allowing you to leave when you need to get out of there because claustrophobia is kicking in lol. Increase exposure times. You will see, wow, I can do this. 

 

3. While out exposing yourself, don’t be afraid to ask for help. Say you start feeling dizzy and need to sit down. Then by all means sit down and if someone is walking by, just say “I’m sorry, felt a little lightheaded there for a second.”. In my experience, people won’t judge you and they will honestly want to help you, not hurt you. Then you will probably get to talking and forgot you were nervous in the first place about covering up what you were going through. Don’t cover it up, be vocal. 

 

4. You will eventually see by exposing yourself to situations you control, that yes, you do not need a medication to be your “crutch”. You can do anything. 

 

5. Do the opposite of what you would normally do. Go compliment someone.

 

6. Instead of focusing on yourself while out, look around. Help people. Say hello to them. Give them a compliment. Make a joke. This usually will break all awkwardness and will get an entire room laughing and joking and having a good time. Whenever I don’t feel my best, I compliment people around me. This gives them positive energy and that changes the energy all around you, thus in turn, it has a positive impact on you, too. 

 

7. Nutrition is key. Are you eating enough? What are you eating? I highly recommend drinking wholefat cow milk (lactose-free) twice per day, as it is a natural sedative and gives our bodies what we need to function optimally. Wholefat cow milk also corrects hormonal issues, decreases or eradicates PMS/PMDD, and in turn will regulate your cycles. Are you getting enough fat with each meal? If you need to eat every two hours then the answer is no. You should comfortably be able to go at least 4 hours inbetween meals and never reach a state of “being so hungry that your stomach is turning inside out and you are going to lose control if you don’t eat”. With fat, you keep insulin levels consistent. A meal with too much protein and not enough fat will spike insulin same way that a high carb meal with not enough fat and protein will do. Saturated animal fat and cholesterol is important and should not be cut out of a healthy diet... but diet should not be just all high fat either. What I have found, in most all cases, long term, the best macro count is a diet that is roughly 45 carb, 20 protein, 35 fat, and a diet that includes all the food groups. Limit baker’s yeast, but do have pasta daily if you like. Be sure to include seafood several times per week in your diet if you can, unless you are allergic. Have wholefat lactose free cow milk twice per day. Include vegetables for vitamin C. Limit any grain made with baker’s yeast, but you don’t need to completely avoid it, unless you are intolerant which many people are. Red meat is excellent and should be consumed and not avoided. If you are on a restrictive diet, a lot of your issues are from that, and not a long lasting medication withdrawal... you will need to change things up to get better. Even if you are not on a restrictive diet, you may be unaware of proper nutrition, and you probably would benefit from see a registered dietitian (not a nutritionist... if they suggest supplements they are full of crap and not experienced enough). No one should need supplements on a proper diet, unless they are vegan or vegetarian, or have legit malabsorptive disorders such as Crohns, permission anemia, celiac, cirrhosis, s/p gastric bypass, small bowel resection, etc. 

 

This is not medical advice but general advice to consider and to go over with your healthcare provider. Not one thing works for everyone, but see how you can apply these techniques and alter them to your lifestyle to work for you. 

 

Good luck all!!! Xo

 

[India]

On 7/20/2016 at 12:38 PM, Yogagirl38 said:

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 went to a and e with leg paralysis and numbness when I reduced my meds dosage . They said they had lots of unexplained cases of numbness , temp facial paralysis etc..

I look back and wonder how many of these cases involved ssri’s?

 

 

[Yogagirl38]

Probably all of them 😂 😬 in all seriousness though, it is sad. I worked in healthcare for years and I can tell you pretty much everyone is on something, including most doctors and nurses. They really have no clue when it comes to chemistry!

[EricaLB]

YogaGirl38-

This almost exactly what I have been going through. 20 years of Zoloft for migraine prevention has made me very very sick. I feel like there should be some kind of requirement that the drug companies don't ruin lives.

[Yogagirl38]

9 hours ago, EricaLB said:

YogaGirl38-

This almost exactly what I have been going through. 20 years of Zoloft for migraine prevention has made me very very sick. I feel like there should be some kind of requirement that the drug companies don't ruin lives.

 

[Yogagirl38]

Sorry you were also affected. Sadly, big pharma dictates how doctors treat their patients and doctors are very upset by it also with many actually quitting their jobs and changing to completely different occupations. I also was burnt out from what I witnessed working in healthcare and I will never work in healthcare again because what goes on is morally wrong. Insurance Companies and pharmaceutical companies dictate care and management dictates quantity over quality. Drug reps have no clue about their products which i used to really grill them about... they just provide fancy lunches and tell doctors what they want to hear. Drug reps get paid big money doing this. The whole healthcare system needs to be revised but never will be. The best advice... don’t get sick lol. You will be fine the further you get away from when you discontinued the medication. Examine your nutrition to make sure you are eating good for you, and examine possibly physical therapy with a sports physician. Migraines can be controlled with proper nutrition, proper understanding of body mechanics, changing how u do things (example cutting up food instead of biting into foods and shredding... stuff like that). Good luck!

[SOcean]

On 7/21/2016 at 5:18 AM, WiggleIt said:

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.

What ended up happening with the lawsuit? I have movement disorders from prozac most likely. I tried to find a lawyer locally. Could not find one who would take my case. 

[Yogagirl38]

9 hours ago, SOcean said:

What ended up happening with the lawsuit? I have movement disorders from prozac most likely. I tried to find a lawyer locally. Could not find one who would take my case. 

hi! I never took part in a lawsuit. I was very angry and definitely thought about it, but ultimately, what happened happened, and i felt it’s best to just accept it, let it go, and move on. Instead, i reported it to the FDA. Also, any person questioning if they should start a medication that alters how serotonin works in the brain, I advise them against it and tell them why. Instead, i advise them of lifestyle changes and how to use food as medicine

[Yogagirl38]

10 hours ago, SOcean said:

What ended up happening with the lawsuit? I have movement disorders from prozac most likely. I tried to find a lawyer locally. Could not find one who would take my case. 

also, just read your bio. Don’t go back on prozac and don’t take anything. You will be fine with time. It’s very scary but u r going to just have to do it. Tremor could last 6 months. The tardive dystonia can last a while also, but gradually get less and less, with total recovery sometimes taking 1-3 years (but the worst will be done by like 4-6 months, then it’s not so bad). Also, have a full iron panel done INCLUDING ferritin and TIBC. Even if your folate is normal, but your ferritin is low, you should start a gentle iron supplement. But, don’t blindly take it without knowing what your ferritin level is, or you could kill yourself and destroy your liver (iron overload). All women who menstruate should have ferritin checked and if it’s under 30, even though it’s “in range low” should start a low dose gentle iron supplement to take once per day for 6 months. Iron deficiency can cause the movement issues and make them worse. Would also recommend to start eating 1 sweet red bell pepper per day, sauteed. 

[SOcean]

1 hour ago, Yogagirl38 said:

hi! I never took part in a lawsuit. I was very angry and definitely thought about it, but ultimately, what happened happened, and i felt it’s best to just accept it, let it go, and move on. Instead, i reported it to the FDA. Also, any person questioning if they should start a medication that alters how serotonin works in the brain, I advise them against it and tell them why. Instead, i advise them of lifestyle changes and how to use food as medicine

Hello! Yeah, I was wondering about the person who asked you if you wanted to partake in the suit. I was wondering what came of the suit he or she was in. 

Your posts have given me hope. I was on prozac for 12 years. I got muscle spasms and twitches right away after I started it. The doctors blew it off. So I ignored the side effects for all that time until they started getting worse the last few years. And then I had a horrible reaction to a steroid too and have been extremely ill since. But the side effects from the prozac were causing problems before that. I am now realizing how it was poisoning me over the years and symptoms I thought were other things (like fibromyalgia) have improved since I've been off, but the movement disorder has not. I now have internal tremors constantly,  visible tremors in my hands, head and neck, the head one never stops even at rest. I have a postural tremor when I hold my fork, which came after steroid. I have weird wobbly action tremors. My hands and wrists wobble when I lower them. All my muscles wobble when I lower them actually. My neck shakes when I look down or up. I have muscle twitches and cramps constantly. I have rigidity when I walk. Sometimes i feel like everything freezes up and I can't move. I feel like I'm going to fall backwards. I have writers cramp and both hands cramp up when I try to use them, like holding a phone, etc. Typing this right now... my hand is cramping up. They cramp up at night and I wake up when them in a cramped position. My eyes and eyelids are constantly cramping and I just discovered that I have blepharospasm in certain positions....m eyelids flutter. I feel like I have to strain my eyes all the time to keep them open. I have video of it and I'm just now starting to show the doctors, so they can take me seriously, because they don't. My eye muscles behind my eyes cramp and shake when I use them. I may have abnormal eye movement. One doctor says I have saccadic eye movement disorder. My vision is bad now because my eyes are not working together. I have balance problems and my whole vestibular system seems to be messed up. Like you, I went to the neurologists and did all the tests and didn't get many answers. 

 

A lot of the symptoms aren't visible enough yet for doctors to believe me and it is beyond frustrating. They see the tremor, but a lot of the dystonia doesn't show up at the doctor's office or isn't noticeable enough for them to see, even though I can feel it. And I can pass their neuro exams. They blow it off as anxiety and "maybe" essential tremor.

 

My face has tics and internal twitches and lately  it has been cramping up in bright light. My muscles in my body and neck get tight and rigid over any stimulation. My muscles on my head cramp up and spasm too. All this is terrifying. I have been off prozac for 4 months and have not noticed improvement. I did a fast taper though over only a month. I do not want to get back on.

The doctors had me stay on prozac while I was pregnant and I am terrified that is damaged my son. He has shaky hands and is very over sensitive. He is 11. My dad has tremor on one of his arms and a little in hands.  It is more postural and started when he was 60. He is kind of a shaky person too. I'm worried that I may be predisposed for this stuff genetically. So I may not recover as fully as you did. But I am hoping that I can recover from some of it. My dad doesn't have dystonia. I am only 39 with an 11 year old. My life has been pretty much destroyed from these drugs. Anyway, your story has given me some hope and I wanted you to know that. If there's any more info you can give, I'd be grateful. 

[SOcean]

2 hours ago, Yogagirl38 said:

also, just read your bio. Don’t go back on prozac and don’t take anything. You will be fine with time. It’s very scary but u r going to just have to do it. Tremor could last 6 months. The tardive dystonia can last a while also, but gradually get less and less, with total recovery sometimes taking 1-3 years (but the worst will be done by like 4-6 months, then it’s not so bad). Also, have a full iron panel done INCLUDING ferritin and TIBC. Even if your folate is normal, but your ferritin is low, you should start a gentle iron supplement. But, don’t blindly take it without knowing what your ferritin level is, or you could kill yourself and destroy your liver (iron overload). All women who menstruate should have ferritin checked and if it’s under 30, even though it’s “in range low” should start a low dose gentle iron supplement to take once per day for 6 months. Iron deficiency can cause the movement issues and make them worse. Would also recommend to start eating 1 sweet red bell pepper per day, sauteed. 

Oh, just saw this. Sorry, my eyes aren't great right now. I'm missing stuff. Thank you for the info! I have been off the prozac for 4 months and nothing has improved yet as far as movement and tremor. 😞 The drug reaction to steroid made things worse. I developed the postural tremor and constant resting tremor in head and neck after that. That was in June.

 

What does the red pepper do? I'm not supposed to eat a lot of peppers because of arthritis but I will if it is important (I have arthritis already at 39). Also, mentioned above that my dad has some tremor that started at 60, and his dad had some. Did not start at my age though and they don't have the moveent disorder that I have.  But my son has shaky hands too so I'm worried it is in the family (or he got damaged while I took prozac when I was pregnant) and I may not recover as much as you, but if I can at least recover from the dystonia, blepharospasm and some of the tremor, and just not feel horrible ALL of the time, that would make a world of difference. 

 

I noticed a couple years ago that my hands were cramping up, especially in the morning and not doing what I wanted them to. I told so many doctors and they just blew it off, as usual, like they did with the muscle spasms and ticks. Now I can barely use my hands in the morning or if I get stimulated at all, or use them for typing or holding a phone, they just lock. And it hurts! Walking, outside, neck, legs, arms lock up. So scary. Also like I mentioned, my balance and vision are a mess. Cannot drive. Lately there has been nausea too because of balance and I can't tolerate even being a passenger in a car. Eyelids cramp and shake when I lay down and look up, or even when I close my eyes. So resting is even hard. Can't watch tv because of my eyes. Can't really read. Typing this is hard but going on here is kind of all that is helping me right now! I feel like I'm completely destroyed, but again you have given me hope!!!!! Thank you! 

[Yogagirl38]

23 hours ago, SOcean said:

What ended up happening with the lawsuit? I have movement disorders from prozac most likely. I tried to find a lawyer locally. Could not find one who would take my case. 

also, just read your bio. Don’t go back on prozac and don’t take anything. You will be fine with time. It’s very scary but u r going to just have to do it. Tremor could last 6 months. The tardive dystonia can last a while also, but gradually get less and less, with total recovery sometimes taking 1-3 years (but the worst will be done by like 4-6 months, then it’s not so bad). Also, have a full iron panel done INCLUDING ferritin and TIBC. Even if your folate is normal, but your ferritin is low, you should start a gentle iron supplement. But, don’t blindly take it without knowing what your ferritin level is, or you could kill yourself and destroy your liver (iron overload). All women who menstruate should have ferritin checked and if it’s under 30, even though it’s “in range low” should start a low dose gentle iron supplement to take once per day for 6 months. Iron deficiency can cause the movement issues and make them worse. Would also recommend to start eating 1 sweet red bell pepper per day, sauteed. 

[Yogagirl38]

I had all those symptoms too actually. Exact same thing. The eye dr observed the blepharospasm and suggested botox, which i declined, because i knew it would stop eventually, which jt did. I had twitching for 4 years straight in my lower eyelid and it stopped 4 months after discontinuation of zoloft. I also had fasiculations all along the nerve path around my eye, down my cheek, around my mouth, and you could see the fasiculations. I used to constantly feel a sensation like my cheek was being pulled back towards my ear (that was actually dystonia). I had a hemifacial spasm that lasted 4 weeks, during the quitting process, which I documented and showed a neurologist, he said to never take anything that affects serotonin again. Other issues i had were sometimes writing, my fingers would do weird things. My foot would kick off the gas pedal when driving. Benign Fasiculation Syndrome. Akathisia was the worst of everything. What you and i both had is called EPS (extra pyramidial symptoms) and they are caused by any medication that alters how serotonin, melatonin, and dopamine function. I also was diagnosed with a visible tremor. I also had a resting head tremor that lasted 6 months, and occipital neuralgia. The neurologist suggested shooting a nerve block i think he said, which i declined and just toughed it out. I am totally cured of everything now, and have none of those issues any more. And you will be fine also as long as you stay away from all medications, particularly any medication that affects serotonin or melatonin (that includes no PPIS... the brain sees prilosec as melatonin so u cant take that). Steroids are bad also. I had twice was prescribed a seemingly harmless fludrocortisone and both times it brought on neck dystonia and seizure like reactions. So i cant take steroids either since all this. The only medication im safe with since this is tylenol, advil, and percocet. But i dont take anything unless im practically dying now lol. Like in 3 years, i took 1 percocet when i broke my finger, 1 advil, and 2 tylenols. That’s it in like 3 years. Im really against meds. I treat myself nutritionally and use diet as medicine and it works. I am also non-anemic iron deficient but ive been that way since a teen, with anemia on and off and im over 40 now. I have small bowel absorption issues and heavy periods so despite a high iron diet, I cannot up my iron stores with a supplement and iron deficiency will make u worse (which is why u should get ferritin checked - it should be 100 optimally. If it’s under 30 it’s in range but you will get issues so should take gentle iron- but u must get checked so u dont cause liver damage). 
 

I completely recovered, so will u. The last neurologist i saw said i was the only patient that had recovered from fasiculations and i know why, it’s because i dont take meds. The people that are suffering it’s becayse they switched from one med to another and the body doesn’t want any meds because all meds are toxic. 
 

Lightly cooked red sweet bell peppers will help u. They help arthritis. Stay away from green ones, as they are unripe. Vit C will help neurons in the brain, will help u uptake iron, will get more oxygen to the brain and organs, will fight free radicals, will help arterial and connective tissue strength, etc... they are a miracle food. 
 

 

[Yogagirl38]

so have your ferritin checked. Start incorporating red meat and lots of cooked vegetables in your diet, especially red bell peppers. It’s not just the C that helps, there are other things in them that help. Stay active. For tremor, you can go on youtube and look up physical therapy for neck tremor, neck dystonia, hand tremor/dystonia for whatever body part is acting up and it will help make it stop while you are in the process for waiting for your brain to start functioning correctly again. You will get there. Prayers to you!!!

[Cocopuffz17]

On 7/20/2016 at 5:38 AM, Yogagirl38 said:

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.

 

Anyone else with a story like mine?

 

I now know a ton of my "unknown cause" conditions were caused by my medication. I never ever had a doctor question the medication. Like you said I went through tons of tests and nothing was found. I did my own research on nutrition and found this forum and have been able to reverse my autoimmune condition and come of this drug I was told I needed for life. 

 

Thank you so much for sharing your story! I appreciate it! 

[Yogagirl38]

3 hours ago, Cocopuffz17 said:

 

I now know a ton of my "unknown cause" conditions were caused by my medication. I never ever had a doctor question the medication. Like you said I went through tons of tests and nothing was found. I did my own research on nutrition and found this forum and have been able to reverse my autoimmune condition and come of this drug I was told I needed for life. 

 

Thank you so much for sharing your story! I appreciate it! 

i am so happy for you!!! That is great news!!! I don’t really think anyone needs medication. Meds are only needed for life or death situations, or to treat cancer, etc, other than that, for every day issues, the right diet is all anyone needs

[SOcean]

19 hours ago, Yogagirl38 said:

I had a hemifacial spasm that lasted 4 weeks, during the quitting process, which I documented and showed a neurologist, he said to never take anything that affects serotonin again.   

 

 

You are lucky you had a neurologist that recognized that it was the Zoloft and other drugs. I have been to about 10 and all of them completely dismiss that idea and do nothing for me. Infuriating. 

They tend to say it is essential tremor. They like to say "benign" tremor and "benign" blepharospasm, like I'm supposed to be ok with having it. They don't believe me about the twitches and  fasciculations because they didn't show up in the EMG they did on one arm and leg. Like I'm making it up for fun. They haven't seen the dystonia because it hasn't shown up when I am there. So they don't believe me about that or the rigidity. And since I can pass their exams, even though I'm shaky with weird tremors and bad balance, they just blow it off.  So far the neurologists have been really disappointing and I seriously cannot believe how crappy so many doctors are. It is disturbing!

 

I do worry that because I have tremor in my family I won't recover completely and tremor and blepharospasm will progress, but I will keep healing and hoping for a good outcome. It has been 4 months off and I haven't seen anything decrease yet. I know that the drugs brought this on, especially the prozac. But also the steroid. My nervous system feels completely fried. I hope I can undo damage. 

[IWantToHeal]

This is what is happening to me. I'm 5 months off the Zoloft and I have involuntary facial movements. It's so embarrassing and makes me really self conscious. All of this and I was only on the drugs for about 8 months.

 

My eyebrows raise and my eyes both widen so my face takes on a shocked expression. And sometimes my mouth opens and I have tongue movements. My right eye and cheek seems to be most affected.

 

The tongue movements I can keep from doing in public but the eye movements people have noticed happening. This all started when I was on the Zoloft too and I haven't had any improvement since coming off the drugs. I don't take any drugs at the moment and I really hope things get better with time. Reading information online about tardive dyskinesia it can sometimes be permanent

[Yogagirl38]

I am so sorry you are also a victim to this horrible drug that should be taken off the market! How dare pharmaceutical companies mislead physicians about the dangers of these drugs. So wrong on so many levels. My advice is to hang in there... my tongue spasms took a year to go away. My hemifacial spasm took 6 weeks to go away. My eye dystonia i had 4 years, was even considering botox. Also, i can never take any medication that the brain perceives as melatonin or setatonin ever again or the dystonia will come back... that includes all PPIs. So if you are on a PPI like prilosec u need to discontinue that (the brain sees that as melatonin). No fludrocortisone either (that triggered me twice to have neck dystonia. 

[IWantToHeal]

What did your eye dystonia involve?

 

I'm completely clean of drugs now. I also  experience the neck dystonia and have done since I started taking Sertraline back in Jan 2019. It feels like I have to twist my neck backwards and to the right, the same side of my body where the eye twitch and cheek twitches are the worst. I've not noticed any improvement so far but I am encouraged by the fact you were able to recover. 

 

I agree with you on the fact that pharmaceutical companies are out of order for pushing these horrible drugs on people. I can only wonder how many thousands of people are affected like us but haven't spoken up...

[Yogagirl38]

My eyelid twitched every day all day for 4 years straight, but stopped exactly 4 months after discontinuation of zoloft. That sucked. Also, I had fasiculations all around the eye area from eyebrow to below eye. I do not consider that true dystonia, but in the same category of dystonia (no actual blinking). For the hemifacial spasm, that was definitely dystonia, pulled the corner of my mouth up. Spasms in neck on that side. My tongue would get pulled down making it hard to speak. My tongue problem lasted a year. The eye doctor called my eye issue dystonia and offered botox, but I decided to wait it out and it stopped. I also would have a resting head tremor. There are dystonia physical therapy exercises u can do to help it stop, google youtube for “physical therapy dystonia/face/neck/head tremor” they work great. Also “touch” works. Like if an area is spasming, if u touch it, it stops. My neurologist also said benedryl will stop dystonic flares, but i never took benedryl. 

[IWantToHeal]

It sounds similar what I have. Except also I have the rapid blinking and weird eye widening and eyebrow raising movements.

 

And those hemifacial spasms are exactly what I am experiencing now! How long after stopping the Zoloft did it take for those spasms to go away? I know exactly what you mean with the speech issues too, I didn't know it was caused by my tongue being pulled down though. Sometimes I struggle to get my words out properly. My voice seems really faint and I have to really strain to get the words out. It's not all the time though. Also all of these symptoms seem to come and go, they're not always present, and seem to be exacerbated by stress.

 

I did cold turkey the drugs so maybe that was the cause. Looking back on things these issues actually occured right at the start when I first started taking Sertraline but I wasn't aware enough to see it could be a long term problem. The drugs put me in a bubble where I was oblivious to a lot of things.

 

Thanks so much for the tips, I'll certainly try some of those out. I really fear I'm one of the ones who  will be affected permanently by this. I'm British but I live out in China now so I'm tempted to get some brain acupuncture or something like that to see if that can help. Not sure what "real" medical services they provide out here but if it doesn't get better in a month I will be taking a trip to the international hospital here. I know in the UK they can provide electric deep brain stimulation for people with dystonia and that can sometimes reverse the condition.

 

 

[Yogagirl38]

The hemifacial spasm took 6 weeks to stop. That was awful but just hang in there... if you start physical therapy that may help it go away quicker, you can google physical therapy for Meige Syndrome. My tongue issue took a year to stop. I also had a problem with my foot where it would kick by itself only when driving. That lasted 6 weeks and went away on its own. That was scary because i didnt know if i would have my driver license taken away. Definitely try physical therapy... also eating sauteed sweet red bell peppers may help- 1 sweet red bell pepper a day. They are high in vit C and other things that help the brain and help neurons. Worth a shot. Good luck!

[Rozon1]

Hey @Yogagirl38 I’m reading your story and glad you recovered. I tapered over 2 months and cold turkeyed half way through. I am 2 1/2 months off and dealing with withdrawls. Anxiety, insomnia and a few other uncomfortable symptoms. I was going to ask if I should reinstate and taper properly even tho I’m so far out? Or would you recommend me sticking it out at this point?

 

the drug I was using was effexor and not Zoloft but very similar. 

[Yogagirl38]

1 hour ago, Rozon1 said:

Hey @Yogagirl38 I’m reading your story and glad you recovered. I tapered over 2 months and cold turkeyed half way through. I am 2 1/2 months off and dealing with withdrawls. Anxiety, insomnia and a few other uncomfortable symptoms. I was going to ask if I should reinstate and taper properly even tho I’m so far out? Or would you recommend me sticking it out at this point?

 

the drug I was using was effexor and not Zoloft but very similar. 

Hello and congratulations. DO NOT REINSTATE. DO NOT GO ON ANY OTHER MEDICATION. So what you are dealing with right now is "anticipatory anxiety". In other words, you relied on the drug you were on as a "crutch". So now you have to show yourself, that you don't need a crutch to lean on. You do that by continuing to expose yourself to situations that make you uncomfortable, that you have control over, for short periods of time. Gradually increase the exposure to longer intervals. This will teach your brain that it doesn't need to trigger a fight or flight response. It takes time. Neurons take at least 8 weeks to go back to normal, but it takes several months to re-teach your brain that you can do things normally and without a crutch. Don't put yourself into a situation that you can't escape from at this time. Put yourself in uncomfortable situations right now, that you CAN leave from whenever you want, so you can teach yourself, I can do this. Eventually you will get to the point you will realize that even when uncomfortable things happen, you can handle it. This is cognitive behavioural therapy, and IT WORKS. In the meantime, be sure you are eating enough calories. Be sure you are getting lots of nutrients, particularly vitamin C from fruit and vegetables, and heme iron, particularly from land animals. Meditate at least once per day. Go for walks. Reconnect with nature. Get at least 20 minutes of sun exposure without sunscreen per day. Limit electronics, they are bad and cause undue stress. Get into journaling, hiking, going to the gym. Limit caffeine. Limit sugary sweets. Those things will all help!!! GOod luck!!!

[Yogagirl38]

PS. You will go back to normal. Day 7 to week 8 are the worst times after discontinuation, because it takes about 8 weeks for the neurons to even to start to communicate normally again. That's why symptoms are bad at that time period. After week 9 or so, it gets better and better. By month 4 it is a lot better. At the 1 year interval, you are totally normal again. My husband had tried effexor and it affected him bad, he felt suicidal and was hallucinating after discontinuation, the 4 weeks after discontinuation were horrible for him. He was pretty much confined to our basement couch with brain zaps and it was awful. Took him a few months after to get to normal. He is totally normal now, doesn't take any medication. You will be normal, too, just stick it out

[Rozon1]

@Yogagirl38 thanks for your advice! my worries is that, my sleep wont come back, or my constipation won't leave me, or my anxiety wont go. Days have gone and I've seen small improvements. I can tell my brain is starting to settle down. I don't really have issues with crowds or going in public. I'm more concerned with my physical symptoms for the most part, you know? Also, THANK YOU AGAIN!

[Sani]

On 7/23/2019 at 6:36 PM, Yogagirl38 said:

Hi all! Wanted to give helpful advice on what has not just worked for me, but a lot of other people that have also tried methods I researched and applied. These methods may not be for you, and may not work for you. 

 

So once you recover from the physical aspects of what happens after discontinuation, and your brain has neurochemically returned to normal, you are still left with an anticipatory learned behavior of whatever it was that you were fearful of. You are somewhat similar to someone coming out of a coma, that needs to learn how to walk and talk again. This analogy is a little far-fetched, but you get the drift; you have to instill new ways of how you think about things and how you approach things. You must also accept that this traumatic experience happened to you, and you need to let go of it and the anger you probably have, so that you can move on. Acceptance is the final stage to regain your “freedom”. When you hit that, you are fully recovered.

 

I have successfully been off zoloft 3 years or so. I did have 2 dystonic flares after I discontinued zoloft, from a prilosec pill, and a pseudofed allergy pill. I also started getting dystonia from a fludrocortisone nasal medication. That was all early on after the discontinuation... but I have been symptom free for a year. I would have been symptom free for 2 1/2 years if it not for the reactions to those seemingly harmless other meds (I am just a rare case of someone that reacts to these things). The brain sees prilosec as “melatonin”... which is bad for people with or history of dystonia, because you can’t take anything that can alter melatonin or seratonin levels once you have had dystonia. Off label, some PPIs like prilosec are actually even used for sleep disorders. 

 

So here is how to heal:

 

1. Read about the “pink elephant theory”. This is a great tool to help you redirect run-on and negative thoughts. It works. This allows you to re-wire your brain essentially, so you actually don’t get run-on thoughts any longer. I used to get run on thoughts several times a minute and now I get none, and no longer need to use this, but it is always there god forbid something pops up in the future.

 

2. Be honest with yourself. What are you fearful of most. Whatever that is, face it. Expose yourself little by little. A big thing for me after i was healed after discontinuation of zoloft, about a few months after discontinuation, was doing normal errands like waiting in line at the deli to give my order, or to go shopping in public. Zoloft was my crutch, and I had to show myself that I can do anything and I don’t need that crutch, which while on zoloft, I fooled myself that I needed that to be confident. I did not. Expose yourself to situations you have control of, like going to a store to expose yourself but allowing you to leave when you need to get out of there because claustrophobia is kicking in lol. Increase exposure times. You will see, wow, I can do this. 

 

3. While out exposing yourself, don’t be afraid to ask for help. Say you start feeling dizzy and need to sit down. Then by all means sit down and if someone is walking by, just say “I’m sorry, felt a little lightheaded there for a second.”. In my experience, people won’t judge you and they will honestly want to help you, not hurt you. Then you will probably get to talking and forgot you were nervous in the first place about covering up what you were going through. Don’t cover it up, be vocal. 

 

4. You will eventually see by exposing yourself to situations you control, that yes, you do not need a medication to be your “crutch”. You can do anything. 

 

5. Do the opposite of what you would normally do. Go compliment someone.

 

6. Instead of focusing on yourself while out, look around. Help people. Say hello to them. Give them a compliment. Make a joke. This usually will break all awkwardness and will get an entire room laughing and joking and having a good time. Whenever I don’t feel my best, I compliment people around me. This gives them positive energy and that changes the energy all around you, thus in turn, it has a positive impact on you, too. 

 

7. Nutrition is key. Are you eating enough? What are you eating? I highly recommend drinking wholefat cow milk (lactose-free) twice per day, as it is a natural sedative and gives our bodies what we need to function optimally. Wholefat cow milk also corrects hormonal issues, decreases or eradicates PMS/PMDD, and in turn will regulate your cycles. Are you getting enough fat with each meal? If you need to eat every two hours then the answer is no. You should comfortably be able to go at least 4 hours inbetween meals and never reach a state of “being so hungry that your stomach is turning inside out and you are going to lose control if you don’t eat”. With fat, you keep insulin levels consistent. A meal with too much protein and not enough fat will spike insulin same way that a high carb meal with not enough fat and protein will do. Saturated animal fat and cholesterol is important and should not be cut out of a healthy diet... but diet should not be just all high fat either. What I have found, in most all cases, long term, the best macro count is a diet that is roughly 45 carb, 20 protein, 35 fat, and a diet that includes all the food groups. Limit baker’s yeast, but do have pasta daily if you like. Be sure to include seafood several times per week in your diet if you can, unless you are allergic. Have wholefat lactose free cow milk twice per day. Include vegetables for vitamin C. Limit any grain made with baker’s yeast, but you don’t need to completely avoid it, unless you are intolerant which many people are. Red meat is excellent and should be consumed and not avoided. If you are on a restrictive diet, a lot of your issues are from that, and not a long lasting medication withdrawal... you will need to change things up to get better. Even if you are not on a restrictive diet, you may be unaware of proper nutrition, and you probably would benefit from see a registered dietitian (not a nutritionist... if they suggest supplements they are full of crap and not experienced enough). No one should need supplements on a proper diet, unless they are vegan or vegetarian, or have legit malabsorptive disorders such as Crohns, permission anemia, celiac, cirrhosis, s/p gastric bypass, small bowel resection, etc. 

 

This is not medical advice but general advice to consider and to go over with your healthcare provider. Not one thing works for everyone, but see how you can apply these techniques and alter them to your lifestyle to work for you. 

 

Good luck all!!! Xo

 

Thanks. Your the one I seriously follow and you're the one giving me hope. I was doing well 4 months off Lexapro, but had a course of antibiotics and it all went haywire. I'm on my withdrawal again now, from where I started gone back to that point again... I never knew antibiotics were such a trigger. Are u aware of any more potential triggers? I'd be glad if you can speak out of experience, in your three year journey.

[Yogagirl38]

Hi! Was it a  floroquninolone antibiotic like levofloxacin because if it was then yes, that antibiotic causes dystonia and affects the CND system through how it affects GABA in the brain, so once discontinuation of the antibiotic happens you will go back to normal, could take 2-3 months to go back to normal. Try to avoid all medication unless absolutely necessary and before you take it, check to make sure it does not interfere with GABA, serotonin or melatonin, which the prescribing doctor won’t know about, but a pharmacist would, or read the package labeling which is usually available in detail on the manufacturers website. In my experience the only safe meds are advil, tylenol, and percocet so i avoid all meds unless im dying lol. You should get better soon just be patient in the mean time!!! Good luck!!!

[Yogagirl38]

Oh one more thing, my neurologist told me if i ever have to take a med in the future that a dystonic flare happens again, he said to take benedryl right away to stop it. I don’t know if benedryl would help days after but u could try a benedryl to see if it makes some of your symptoms now subside?

[Sani]

3 hours ago, Yogagirl38 said:

Oh one more thing, my neurologist told me if i ever have to take a med in the future that a dystonic flare happens again, he said to take benedryl right away to stop it. I don’t know if benedryl would help days after but u could try a benedryl to see if it makes some of your symptoms now subside?

Thank u so much.... I'll try benedryl tonight.. the tremors in my legs are so irritating, and make them feel like they're made of jelly.. thank u so much... Also I completely avoid the antibiotics that u mentioned, coz I had a bad reaction to cipro once... This time it was amoxicillin though, which to my surprise was well tolerated by me all these years.. a lil research n I gotta know penicillin clog GABA receptors too.... Guess im never ever gonna take any meds here onwards....

[Yogagirl38]

Good luck!!! Another thing too that can cause week legs with muscle fasiculations in women is actually non-anemic iron deficiency, especially if you get heavy periods, have adenomyosis or endometriosis, or your cycles come too close together. To check for that you have to ask for a full iron panel and make sure specifically to request ferritin. Even if levels are in range but under 30, your symptoms can be from that, especially if you are a runner or athlete

[Sani]

On 2/25/2020 at 12:49 AM, Yogagirl38 said:

Good luck!!! Another thing too that can cause week legs with muscle fasiculations in women is actually non-anemic iron deficiency, especially if you get heavy periods, have adenomyosis or endometriosis, or your cycles come too close together. To check for that you have to ask for a full iron panel and make sure specifically to request ferritin. Even if levels are in range but under 30, your symptoms can be from that, especially if you are a runner or athlete

Hi, I'd just like to share thatafter taking a course of probiotics ( especially containing the strains, L plantarum and B longum) my symptoms have reduced considerably. I feel the antibiotics killed all the serotonin making bacteria in my gut maybe that y it retriggered my withdrawals

[Sani]

3 hours ago, Sani said:

Hi, I'd just like to share thatafter taking a course of probiotics ( especially containing the strains, L plantarum and B longum) my symptoms have reduced considerably. I feel the antibiotics killed all the serotonin making bacteria in my gut maybe that y it retriggered my withdrawals. Also benedryl helped in inducing sleep last night when I was super anxious

 

[Yogagirl38]

Yeah anything is possible!!! The flora in our gut control intestinal motility, so if flora is disrupted, motility becomes altered which I believe affects the vagus nerve and then wrong signals get sent to the brain that can cause an exaggerated fight or flight response which messes up the autonomic nervous system which affects the whole body, first physically, then mentally. The gut and brain really work hand in hand. If the gut is messed up the whole body is messed up lol.