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Yogagirl38

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

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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!!! 

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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

 

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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?

 

 

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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!

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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.

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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.

 

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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!

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