ajnjj: 2.5 years SSRI merry go round Off 3 lex months heres my story

[ajnjj]

I am sure you all have a similair story. i am sure that yiu are all suffering. i am so sorry for all of you who are suffering like me. this is my first attempt at sharing my story and I am sorry for its length, I just ask that someone give it a read and offer some hope?

 

June 2009, gave birth to my second beautiful baby boy. All hell breaks loose. Severe physical sickness - rapid weight loss, vomitting, Labile blood pressure, headaches, dizziness, balance issues and extreme fatigue. I was not Depressed, did not have post partum. I saw every specialist and had every test done. I was convinced I was dying, bought extra life insurance, wrote a Will, said my goodbyes...

 

My GP at that time told me to see a Psychiatrist. I was desperate, and I did in November 2009. He spent 15 minutes listening, or so I thought. Labled me as having Post Partum and Panic disorder, started me on 50mg Zoloft and .5 Xanax daily for 2 weeks . I have never even taken a xanax prior to this and I knew nothing about Psychiatric meds.

 

9 days later I was wide awake and had been since I started the Zoloft. I was awake and alert and Manic. The doc told me, at day 4 when I called and said I was awake for 4 days, he told me take more Xanax. At day 9 I called and then he said I was in a Manic state and needed an Anti Psychotic. I told him No Way!

 

He then gave me Trazadone to help me sleep and told me stop the Zoloft but continue Xanax. I stopped the Zoloft, stopped the Xanax and Used the Trazadone for sleep. But something starnge was happening to me. People would talk to me and it was as if they were fading in and out and walls seemed like they were closing in on me. I started to feel very Panicky and terrified. Back to the doctor. He prescribed Lexapro 10 mg. I was such a disaster at this point My Mother In LAw had to come stay with me.

 

At this time I went to a new GP where I requested numerous blood tests one being Celiac and another Ebstein Barr. The same day I started the Lexapro was the same day the results came back-Positive for both. I stuck it out with the lexapro becasue my family begged me to. It was torture but I stayed on it for four months and I was amazinly better so I weaned off, apparently to fast. Septeember 2010 3 months off lexapro all hell breaks loose again, back on lex for 2 weeks , horrible side effects, off ct.

 

December 2010 Doc starts me on Paxil 10 mg. horrible side effects burning muscles, hives, spiked Blood Pressure, Insomnia, again, stick it out becasue family begs me too. 5 months later im off Paxil after a , what i thought, was a slow wean. sheer horror breaks out again three months later. Im hallucinating, light is hurting my eyes, sounds hurt my ears, i am so dizzy and off balance I am ready to have a mental break down. Back to the docor, back to the lexapro. Now this is arounnd August 2011. I start to go on Google. I find this site, among some others. i start researching more. I was convinced I has MS or some incurable undetectable horrible disease in my Brain. Now I dont know anymore. My last sliver of Lexapro was January 7th 2012. I am a disaster physically. I have an array of neurological symptoms that I am not sure if I can attribute to my SSRI merry go round or if I am seriously ill. I have seen every specialist yet there are no answers. I am at a loss. The physical symptoms I am experiencing I am in awe of. the Fatigue is unexplainable. The dizziness gets unbearable. The muscles burning and weak are unacceptable. My Brain is Foggy. I feel like I am not real sometimes.

 

There are a million more things I can say but I was wondering if anyone could offer an opinion on my case? It would be very much appreciated.

God Bless each of you and may your Journey down this road get easier by the second.

[Skyler]

There are a million more things I can say but I was wondering if anyone could offer an opinion on my case? It would be very much appreciated.

God Bless each of you and may your Journey down this road get easier by the second.

 

Hi Ajnjj... every symptom you describe sounds like it is related to withdrawal of one or more of the drugs you were on at any given time. I'm so sorry to read your narrative.. it sounds like your life was taken out from under you and you were never after given time to regain your footing. Someone with more knowledge than I have will respond shortly, but let me just welcome you to the forum and thank you for sharing.

 

Schuyler

[ajnjj]

Thank you Shuyler,

I appreciate the kind words and reply, Prayers to you and you recovery.

Oh,

I just wanted to say that after your reply my user name looks a Tad ridiculous, but its my Babies names, AJ and JJ

Thats how i chose my user name...

[Jemima]

I tapered off of Lexapro over four months and that was still too short a time. I took the last quarter tablet (2.5 mg.) on December 14, 2011, and was absolutely miserable for the first three months afterward. After taking the advice about sleeping problems (under the Symptoms and What Helps section) such as darkening the bedroom and wearing a sleepmask, I've finally been able to get six to nine hours sleep at night and that has helped tremendously. I've been feeling a lot better for about the past three weeks, although I still have some problems with light sensitivity and tinnitus, and there's the occasional bad day.

 

I think just about everything you're going through is withdrawal related, and I'm sorry it's been such a rough path for you. Stopping any SSRI cold turkey makes withdrawal even worse, and no, doctors don't know a d*mn thing about it. They've been educated to believe withdrawal symptoms are a depressive relapse and all they know to do is give you more drugs, which only makes things worse. My doctor is the last person I'd go to for help and I may terminate our relationship permanently after what I've gone through: first the severe depression due to too low cholesterol from Lipitor, and then the withdrawal from Lexapro. I don't think I'm willing to give her a third chance, and I'm not sure I'll ever trust anyone who owns a prescription pad again.

 

There's lots of good information and gentle support here on the forum. I'm glad you found us.

[ajnjj]

Thank you...I have so many questions. I have read a lot on here. There is a lot of great information. I was wondering if anyone knows any doctors in NY that deal with this sort of thing? Or, am I better off alone, without the help of another doctor ....

[Altostrata]

Hello, ajnjj, welcome to our community. I'm not a doctor, but to me your story is one of adverse reactions. Some people are hypersensitive to SSRIs and should never be given them. You appear to be one of those people.

 

Yes, we have many stories of unrecognized adverse reactions on this site.

 

My GP at that time told me to see a Psychiatrist. I was desperate, and I did in November 2009. He spent 15 minutes listening, or so I thought. Labled me as having Post Partum and Panic disorder, started me on 50mg Zoloft and .5 Xanax daily for 2 weeks . I have never even taken a xanax prior to this and I knew nothing about Psychiatric meds.

 

9 days later I was wide awake and had been since I started the Zoloft. I was awake and alert and Manic. The doc told me, at day 4 when I called and said I was awake for 4 days, he told me take more Xanax. At day 9 I called and then he said I was in a Manic state and needed an Anti Psychotic. I told him No Way!

The excessive activation and agitation from Zoloft is an adverse reaction. You should have been taken off this drug or dose reduced immediately.

 

He then gave me Trazadone to help me sleep and told me stop the Zoloft but continue Xanax. I stopped the Zoloft, stopped the Xanax and Used the Trazadone for sleep. But something starnge was happening to me....

Again, this sounds like an adverse reaction, initiated by the ADR to Zoloft and continued by the trazodone and Xanax.

 

At this time I went to a new GP where I requested numerous blood tests one being Celiac and another Ebstein Barr. The same day I started the Lexapro was the same day the results came back-Positive for both.

I hope you are being treated for this and your real medical conditions haven't been overlooked in favor of "psychiatric" treatment.

 

I stuck it out with the lexapro becasue my family begged me to. It was torture but I stayed on it for four months and I was amazinly better so I weaned off, apparently to fast. Septeember 2010 3 months off lexapro all hell breaks loose again, back on lex for 2 weeks , horrible side effects, off ct.

After what you'd been through with the Zoloft, you should never have been given another SSRI.

 

December 2010 Doc starts me on Paxil 10 mg. horrible side effects burning muscles, hives, spiked Blood Pressure, Insomnia, again, stick it out becasue family begs me too.

You were having severe adverse effects to Paxil, another SSRI. This may have been set up by your prior adverse reaction to Zoloft, then the other drugs, which left your nervous system hypersensitive.

 

5 months later im off Paxil after a , what i thought, was a slow wean. sheer horror breaks out again three months later. Im hallucinating, light is hurting my eyes, sounds hurt my ears, i am so dizzy and off balance

What we are seeing is that people who have adverse reactions to SSRIs and are kept on them anyway often have very difficult withdrawals.

 

I was convinced I has MS or some incurable undetectable horrible disease in my Brain.

This is unlikely. What is likely is that you have iatrogenic damage and hypersensitivity to psychiatric drugs.

 

I am a disaster physically. I have an array of neurological symptoms that I am not sure if I can attribute to my SSRI merry go round or if I am seriously ill. I have seen every specialist yet there are no answers. I am at a loss. The physical symptoms I am experiencing I am in awe of. the Fatigue is unexplainable. The dizziness gets unbearable. The muscles burning and weak are unacceptable. My Brain is Foggy. I feel like I am not real sometimes.

You are experiencing iatrogenic damage from psychiatric drugs and withdrawal syndrome.

 

My last sliver of Lexapro was January 7th 2012.

When you took Lexapro for the Paxil withdrawal symptoms, did it help any?

 

Clearly, your doctor did not know anything about psychiatric drugs or adverse reactions. At the very least, you have the basis of a complaint to the NY state medical board. You should definitely not take any more advice about psychiatric drugs from that doctor.

 

It's very, very difficult to find doctors, even psychiatrists, who recognize iatrogenic harm from psychiatric drugs and even harder to find doctors who treat it.

 

The good news is, the nervous system tends very slowly to recover.

[ajnjj]

Thank you Altostrata.

I did experience minimal relief from the paxil withdrawals by the lexapro. I am currently on nothing. 3 months off. Do you think there is anyway I can help myself recover? I am being treated for Celiac - I stay away from the food I can not tolerate. After the birth of my second son it activated in my system making me very ill. This was confused for Panic and depression.

I get very scared sometimes. Especially when I get dizzy or feel Like nothing is real. And sometimes I feel very much alone. I try to stay positive and barrel through my days bug some are harder than others .

[Altostrata]

Your symptoms may be withdrawal, or a cumulation of all the iatrogenic effects from the different drugs.

 

Since it helped the withdrawal symptoms a bit, it's possible you could take a tiny bit of liquid Lexapro, such as 1mg, stabilize on it, and taper off more gradually.

 

There's no telling if this will help. The other option is to gently support your nervous system as much as possible and let it heal on its own. Many of us are in this situation.

[ajnjj]

Thank you. I will browse the boards more thourougly to try to answer all of my questions. Thanks for taking the time to read my story and to reply. It means a lot to me.

[elizabeth11]

ajnjj

 

You are in my prayers for good health soon.

 

Elizabeth

[Barbarannamated]

Your symptoms may be withdrawal, or a cumulation of all the iatrogenic effects from the different drugs.

 

Alto -

This is an interesting distinction that I hadn't heard before -

Thank you -

[ajnjj]

Elizabeth, thank you so much. I am still searching the boards for information ... I'd like to see if there are people with similair symptoms or if anyone can offer any words of wisdom on getting through this. There are lots of threads to look through !

[ajnjj]

Physical /Neuro symptoms 3 months out? It's been 3 months off lexapro for me. I have awful neuro symptoms and Im wondering if anyone else has experienced this? Dizzy, balance issues, shaking vision, cloudy vision, jumping brain, ( not a brain zap) internal tremors, auditory sensitivity, severe tinnitus, extreme fatigue, GI

issues, weird /burning muscle pain, memory/concentration problems , feeling of not being real?

Any insight to anything here would be appreciated. I have had a complete physical work up including brain MRI , EEG, heart work up, thyroid check, etc....all normal. Really need some advice. Thanks!!!

[Karma]

Hi Ajnjj,

 

Welcome to the forum. I believe you've been given excellent advise by Alto - she is a rock star! Take a look at my story ... I'm Karma. I was diagnosed with Celiac disease and Hashimoto's thyroiditis in 2005.

 

When healing from Celiac disease you need to repair your digestive system. Magnesium is necessary for your system to absorb other nutrients, but you want to be very careful about trying any supplements given that you appear to be in a state of hypersensitivity.

 

Like I said, take a look at my story and feel free to send me PMs with any questions.

 

Love and light,

Karma

[ajnjj]

Hi Karma,

Wow. I just read through your history. It seems like SSRI s are given to anyone as an answer for anything. This is awful! I too believe that Celiac was the main undiagnosed issue for me. Sigh. I wish you luck and blessings coming off effexor. I hear its very nasty. You sound incredibly strong and bright though.... I started reading some books by Pema Chodron in hope to find answers...can u reccomend any good reading material? I did post one more thread in the symptoms. forum because i have questions about specefic symptoms. Was that ok to do? Sorry to jump all over...

[Barbarannamated]

The depersonalization/derealization (DP/DR) has been one of the most disturbing withdrawal effects for me - it is a perceptual change that causes everything to feel foreign and it provoked tremendous anxiety for me - I've heard a phase of withdrawal referred to as 'autistic' and that word stuck with me because all of my senses were heightened but I felt like I was in a bubble and couldn't connect with people or my environment - my hearing is very sensitized but vision is worse (prior vision problems and LASIX) -

Others have talked extensively about GI problems and vestibular/balance issues as well as the other things you are experiencing -

Many of the symptoms have gotten better although my mind feels sluggish and the fatigue is bad -

[ajnjj]

Thank you, if I may, how long are you in withdrawal now? I read that NONI juice us supposed to help with depersonalzation. Have you heard if or tried that?

[Barbarannamated]

I haven't tried Noni juice recently -

I'm almost a year out from Pristiq - still on Klonopin and trazodone -

The DP/DR and anxiety have diminished significantly - you are at a tough point -

Hang in there

[ajnjj]

So Barb, all these symptoms sound somewhat familiar? The symptoms are what have me really going crazy...I'm wondering about supplements and such too. I read about Magnesium, the b complex and fish oils. Any thoughts?

[Barbarannamated]

There are many good suggestions in the Symptoms and what helps area - enter the symptom or feeling into the SEARCH box and you'll be amazed to find how 'normal' or typical these are through withdrawal - there are different suggestions of supplements and therapies to help each symptom -

It's also a good idea to put these in your Introduction thread so others can see your history and you can see your own progress and what has helped -

[Altostrata]

I did post one more thread in the symptoms. forum because i have questions about specefic symptoms. Was that ok to do? Sorry to jump all over...

It's okay, ajn. It's opened up a discussion about symptoms in general. When you want to post an update on your personal condition, post it here.

[Nikki]

ajnjj....

 

The Epstein-Barr is notorious for causing severe panic and depression. The virus invades in lives in the B-cells in our bodies from our head down to our toes. It was the reason I went on AD's.

 

I was given Zoloft and the panic went thru the roof from one tablet. I then took Pamelor and from there to Paxil.

 

I am not familiar with Celiac Disease, however I can only imagine giving birth, and testing positive to Celiac/EBV would cause anyone to experience what you did. That was too much for anyone.

 

Trust me your fatigue is EBV. EBV is a known CFS virus. Alto is right about th sensitivities to ssri's and God knows you were given enough. The cure for EBV is diet, rest, and for me it was lots of supplements, particularly B Complex.

 

It cetainly sounds like WD is in the mix too. I am so sorry you had to go thru this.

 

To help me with Lexapro wd symptoms when I was at the very low doses I was given Imipramine a tricyclic, it is not an ssri. Did it help, yes. It took the edge off. Thing is, I had to go thru Imipramine w/d when I wanted to get off of it.

 

Hugs

[ajnjj]

Hi Nikki and thank you. It has been 3 years of a war for me. It took nearly 6 months to get my dam dx . All the docs thought I was severely depressed. Prior to this, the birth of baby boy 2, I never had a problem!!!!

Well, every moment is now a struggle. I'm not going back to drugs. Ever. I came believe I ever went on them. I'm going to research more on EBV, Thank you for your advice and compassion. I hope you are doing well on your journey.

[Nikki]

ajnjj...

 

I did a taper from Lexapro and I did have all the os symptoms you are experiencing. The GI issues kept me in the bathroom and when would drink magnesium fizz, it would help right away with anxiety, but it upset my stomach even more.

 

Dizzyness was a biggy, balance was big too. I hit a few walls, embarrassing. Feelings of un-reality is an anxiety symptom. Migratory aches/pains, big too. My memory was shot.

 

I honestly don't know anymore about what helps. Walking, talking, rest, eating well, lotso showers, swimming help a some.

 

So sorry you are going thru this.

[Barbarannamated]

ajnjj...

Feelings of un-reality is an anxiety symptom.

 

I feel that anxiety RESULTS FROM depersonalization/derealization which - I thought- was a perceptual disturbance possibly related to pineal gland. I could be way off in my understanding!

Either way, it's one of the worst parts of all of this for me. I went grocery shopping by myself for the first time in months yesterday. WalMart was overwhelming and i was so disoriented, I couldn't remember what I used to eat or buy.

My vision has been extremely bad through this (wasn't good to start with).

 

I bumped a thread/article yesterday about hearing problems that contains alot of info on how visual disturbances tie into the vestibular system. Just an FYI in case you didn't see it.

[Nikki]

Barbara you probably know alot more than I do about the depersonalization stuff. It took me years to realize I had that.

 

Years back I bought Attcking Anxiety & Depression by Lucinda Bassett and that was where I heard that feelings of un-reality or surreal feelings are from anxiety. This has happened to me so many times over the years. After listening to CD's and reading her books, I attributed un-reality to panic. For me, the only time I have had it was when anxiety/panic would creep up.

 

We need Alto here to weigh in

 

Please give yourelf some praise for going to Walmart. It was a big step out. You haven't been there in a long time and you did it.

 

And remember....going to Walmart is usually an annoying,confusing experience. The people I have seen in Walmart make me feel anxious....Have you seen the emails of people shopping in Walmart.

 

We may have anxiety, but we sure look a helluva lot better than some of those photos

[Barbarannamated]

Oh I don't know anything definitive - it's certainly tied in with anxiety and somewhere on the 'dissociative spectrum' and automatic/subconscious defense mechanism with POSSIBLE connection to HPA dysregulation and cortisol -

In other words - it's all a tangled web with much speculation

[Nikki]

Anyone on meds becomes invovled in a tangled web....that's for sure

[Altostrata]

People seem to find depersonalization and emotional anesthesia very distressing.

 

It's important not to let your fears get out of hand and make your symptoms worse. Keep in mind, symptoms tend to come and go and fade away in time.

[Nikki]

Thanks Alto....do they reall clear up?

[ajnjj]

It's do hard to differentiate between withdrawal, anxieties, and actual illnesses for me. I don't get any classic anxiety symptoms. I actually don't really feel anxious at all. But I have all these physical manifestations. I have to talk myself out of going to the ER at least 5 times a day!!!!

[ajnjj]

Wondering if anyone actually Haa many neurophysical symptoms as opposed to depression ? This is the hardest part for me. The brain fog , the balance and dizzy issues, sometimes I actually can feel like my brain slows or stops. I know its connected with my eye and ear issues I have never had before. Does anyone else have experience with this? Thanks a lot!

[Altostrata]

Look in our Symptoms section -- you'll see many people talking about the same symptoms.

 

In the medical literature, dizziness is called the most common withdrawal symptom.

[Nadia]

Interesting, I also have EBV... had mono when I was in college, and then it turned chronic (even though at the time most doctors said you could only get mono once, I had symptoms that lasted for years, including fever). I've heard about 70% of the population in the US has EBV. I wonder how many of us have issues with these kinds of things, and how they might contribute to particularly problematic withdrawals from psych meds (so often prescribed as a cure-all for all sorts of issues).

[ajnjj]

I have wondered that as well Nadia. During t he last few years, i have been through more medical tests than a lab rat. The actually thought it was Lyme at one point, MS at another. Tests all come back ok. Well, there is still a Lyme possibility. But I have come to this recent realization. There may be something medically wrong. There may be something psychologically wrong. There may be nothing at all wrong (except for misdiagnosis of course). However, I have done everything possible to try to "fix" me or rather, get an answer/cure. I have been to hundreds of doctors. If they can't find anything, I must accept that this is me and move foward. It's awful. It sucks. But I will not lay down and give up on living. I battle with myself everyday, some days I win, somedays I lose. Hell, some days I tie! But be EBV, celiac, Anxiety or something unfounded...it doesn't matter in the end anyway. I still have this life to live.

[Romido]

Had to read your story too. I am sorry for what you have been through. The dizziness is the worst. One thing that helped me a lot with lifting the anxiety was reading Claire Weeks' book, Hope & Help for your Nerves. It helps you quiet down the fear that comes with this horrific experience, and for me, let's me get into that sense that "this will pass" instead of "i am dying right now". There is enough involuntary neuro-anxiety coming right now that my own anxiety about the neuro-anxiety was making me non-functional. The book helped me a lot, and I read it at right about where you are now (3 mo off). Hugs to you, I hope it gets better soon.