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SOcean: Having a Hard Time. Need Help/Advice

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SOcean

Hello. My story is somewhat strange and I could really use some help and advice. I have been on fluoxetine from age 25 to 38. I did try and taper off it twice during that time and it didn't turn out well.

 

It was originally prescribed for anxiety by a PCP. Right away I noticed muscle spasms, tics and twitches, and brain zaps but doctor said this wasn't a big deal. It made me feel better to be on it, so I stayed on it. About 4 years ago I had a bad period of depression and suicidal thoughts while on this drug. It was very unlike me as I had never really been a depressed person, mainly an anxious person. I started drinking too much wine to cope. Then dose was raised from 20-40mg. Over the last few years I noticed I often felt "keyed up" and aggravated, which I thought was anxiety, but didn't really feel like regular anxiety. I had to do a lot of physical exercise to exhaust myself and relieve the feeling.

 

Then I started having parathesia and muscle pain, which was diagnosed as fibromyalgia. Then I developed what seemed to be a movement disorder starting in 2018? Tremors, muscle weakness, coordination problems, and being shaky and wobbly all the time. I suspected the prozac and planned to get off of it. 

 

In June 2019 I had a vaccine reaction, was prescribed prednisone 20mg tablets for 3 days, and had a horrible reaction to it which sent me to ER with hallucinations and many other symptoms including worse tremors and balance issues and hyperarousal. I have been extremely ill ever since. After the prednisone episode, due to continuing symptoms  I wanted off the prozac too, so was tapered over a month. I originally did ok until I hit the 1-2 month mark. The akathesia that started after prednisone (I'm not sure if that is what I have. I can hold still but feel jittery inside, shaky inside, with constant internal tremors all over) got worse, tremors inside and out are worse, brain zaps, fatigue, parkinsonism and possible dystonia in my hands, trouble walking, migraines, smaller pupils, nausea, etc.

 

I feel like I am going through a horrible withdrawal, and I don't know what to do. I have been seeing neurologists to rule out diseases and have had MRI, emg, nerve conduction study, etc. (which have come back normal.) Have had extensive bloodwork. Doctors blame the drugs.

 

Psychiatrist wanted to put me on Gabapentin but I have been holding off because I am worried about side effects and withdrawal from that as well. I have migraine and am very sensitive to prescriptions. The doctors I am seeing are at Mayo clinic and appts are a month or more apart. I feel like I am not getting the treatment I need. I am also having some neck and spine issues on top of this which could be causing some of the numbness, but MRI'S aren't showing anything that could cause all the coordination problems I am having. At this point I am having trouble walking and functioning. It is terrifying. I am extremely stiff. Everything cramps up when I try to do things. Especially if I tense up even a little. I am extremely hyperaroused. Everything bothers me, sounds, lights, etc. I have no stress tolerance, no cold tolerance. I am fatigued and jittery at the same time. I have insomnia, poor appetite and I keep losing weight. I hurt all over. I am tingly all over. I have blurred vision (had eyes checked too). My hands and arms feel disconnected from my body. The tremors just keep getting worse.

 

So... I do not know what to do here. The withdrawal is horrible. The tremors are getting worse in my face, tongue,  eyes and neck. I am worried what they will progress to. I am scared to go back on prozac, but what else can I do? If I go back on, how much do I start with? Worried this is just going to keep getting worse, but since the prozac was probably causing or exacerbating a movement disorder, should I go back on? Also, doctors don't seem to know what to do with me and I'm worried about taking the wrong treatment. Should I stay off prozac and take the Gabapentin?

 

Thank you for reading this and for any help you can give. I am only 38, with a young son. I am going through hell and very scared. 


2005-2015 Fluoxetine 20mg (tried to get off it twice during that time) Had bad depression once, so was raised to 40mg. 
2016-June 2019  Fluoxetine 40mg Noticed tics, twitches and spasms in muscles right away, especially in face and behind eyes. Doctors blew it off. Noticed tremors and muscle weakness in arms developing over time, especially after dose increased to 40mg. Noticed nerve pain, parathesia, and muscle pain/stiffness, coordination issues with my hands starting around 2016. Eye pain and vision issues.

June 2019 Was prescribed prednisone 20mg for 3 days, for vaccine reaction. Had horrible reaction to it. Maybe combined with fluoxetine? Reaction included serotonin syndrome like symptoms - hyperreflexia, rigidity, tremor, etc. Doctor had me take it for 3 days even with symptoms. Have been ill ever since with continuing neurological problems, dizziness, nausea, rigidity, tremor, blepharospasm, balance and eye issues movement and vision issues, akathisia, sound sensitivity.
July 2019-August 2019 Fluoxetine Seemed to be causing movement disorder and tremors. Tapered off Fluoxetine. Was cut to 20 mg over a week period, then 10 over a week, then 5 for a week, then 5 every other day for a week. Felt withdrawal at month 2.
2006-2019 Alprazalom Have used sparingly over the years. Not currently using.

September 2019 Was prescribed Ativan for withdrawal symptoms and tremor. Did not help.

September 2019 Was prescribed Gabapentin for withdrawal symptoms and tremor. Scared to take it due to side effects and worried it will make things worse.

November 2019 Diazepam 2mg Took 2 doses, did not seem to help and caused leg cramps. Stopped Diazepam.

November 2019 Flexeril 5mg, taking 1.25 mg very sparingly when needed for rigidity and muscle cramping 

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SOcean

I realized I should've put the offending drugs in the title. Is there a way to change this?  


2005-2015 Fluoxetine 20mg (tried to get off it twice during that time) Had bad depression once, so was raised to 40mg. 
2016-June 2019  Fluoxetine 40mg Noticed tics, twitches and spasms in muscles right away, especially in face and behind eyes. Doctors blew it off. Noticed tremors and muscle weakness in arms developing over time, especially after dose increased to 40mg. Noticed nerve pain, parathesia, and muscle pain/stiffness, coordination issues with my hands starting around 2016. Eye pain and vision issues.

June 2019 Was prescribed prednisone 20mg for 3 days, for vaccine reaction. Had horrible reaction to it. Maybe combined with fluoxetine? Reaction included serotonin syndrome like symptoms - hyperreflexia, rigidity, tremor, etc. Doctor had me take it for 3 days even with symptoms. Have been ill ever since with continuing neurological problems, dizziness, nausea, rigidity, tremor, blepharospasm, balance and eye issues movement and vision issues, akathisia, sound sensitivity.
July 2019-August 2019 Fluoxetine Seemed to be causing movement disorder and tremors. Tapered off Fluoxetine. Was cut to 20 mg over a week period, then 10 over a week, then 5 for a week, then 5 every other day for a week. Felt withdrawal at month 2.
2006-2019 Alprazalom Have used sparingly over the years. Not currently using.

September 2019 Was prescribed Ativan for withdrawal symptoms and tremor. Did not help.

September 2019 Was prescribed Gabapentin for withdrawal symptoms and tremor. Scared to take it due to side effects and worried it will make things worse.

November 2019 Diazepam 2mg Took 2 doses, did not seem to help and caused leg cramps. Stopped Diazepam.

November 2019 Flexeril 5mg, taking 1.25 mg very sparingly when needed for rigidity and muscle cramping 

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Altostrata

Welcome, S.

 

Did you get withdrawal symptoms while you were tapering fluoxetine this last time around?

 

On 11/3/2019 at 4:37 AM, SHanson said:

Then dose was raised from 20-40mg. Over the last few years I noticed I often felt "keyed up" and aggravated, which I thought was anxiety, but didn't really feel like regular anxiety. I had to do a lot of physical exercise to exhaust myself and relieve the feeling.

 

Then I started having parathesia and muscle pain, which was diagnosed as fibromyalgia. Then I developed what seemed to be a movement disorder starting in 2018? Tremors, muscle weakness, coordination problems, and being shaky and wobbly all the time. I suspected the prozac and planned to get off of it. 

 

This sounds like 40mg fluoxetine was too much for you and you were experiencing serotonin toxicity, which eventually caused muscle pain and weakness.

 

Serotonergic overstimulation also might affect appetite.

 

Adverse reactions to psychiatric drugs and withdrawal syndrome both represent neurological or systemic dysregulation. When people are in this state, we often see antibiotics causing severe adverse reactions. Steroids might as well.

 

On 11/3/2019 at 4:37 AM, SHanson said:

Doctors blame the drugs.

 

What does this mean?

 

Gabapentin is a rather mysterious drug. roughly in the anti-seizure class. There's a belief among doctors that it's good for whatever ails you. The effects are unpredictable.

 

At any rate, if you are hypersensitive from drug mishaps, which seems the case, you will not want to try anything at a normal dose.

 

How did Ativan affect you? What dosage did you take?

Edited by Shep
updated to reflect new username in textbox

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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SOcean

Hello. I remember experiencing anxiety and depression the 2 times I tried to withdraw before, but nothing like this. I believe I tapered down from 20 mg the first 2 times. This time was from 40mg. Also, was dealing with the steroid situation, which left me in a horrible state. I immediately got a horrible buzzing feeling in my body after taking the prednisone and it hasn't stopped since. Also, the visible tremors appeared. I had some symptoms before, as mentioned, but it was more weakness and shaky muscles, some internal tremors and twitches. Not visible tremors, until prednisone. I also immediately got stiff and had balance issues after taking the prednisone and haven't recovered. It has been 4 months since I took it. Prednisone (maybe with the Prozac) made me terrified of everything, sensitive to visuals and screens (still have that problem) and sounds, as well as temps. I feel like my nervous system is extremely fragile right now. 

 

Regarding "the doctors blaming the drugs" comment, I meant that they believe my symptoms are not a progressive neurological disease like MS or Parkinsons. They aren't really sure what is going on with me, but Mayo Clinic Neuro and Psychiatrist thinks overstimulation from Prozac and steroid, and they also always say it is anxiety. I feel like doctors always blame everything on anxiety. This is not normal anxiety. One doctor said I may have essential tremor, but that doesn't explain everything else. Others don't think prednisone and prozac can have these effects, which is really frustrating.

 

Any advice on what to do now? I'm in a horrible state. Feel like I have to do something but scared of making things worse. Feel like the doctors just prescribe stuff that make things worse. Should I go back on prozac? 

 

With the Ativan I took 1/4 of a .05 pill a few times, spaced out by days. I don't feel any different since stopping it. 

 

 


2005-2015 Fluoxetine 20mg (tried to get off it twice during that time) Had bad depression once, so was raised to 40mg. 
2016-June 2019  Fluoxetine 40mg Noticed tics, twitches and spasms in muscles right away, especially in face and behind eyes. Doctors blew it off. Noticed tremors and muscle weakness in arms developing over time, especially after dose increased to 40mg. Noticed nerve pain, parathesia, and muscle pain/stiffness, coordination issues with my hands starting around 2016. Eye pain and vision issues.

June 2019 Was prescribed prednisone 20mg for 3 days, for vaccine reaction. Had horrible reaction to it. Maybe combined with fluoxetine? Reaction included serotonin syndrome like symptoms - hyperreflexia, rigidity, tremor, etc. Doctor had me take it for 3 days even with symptoms. Have been ill ever since with continuing neurological problems, dizziness, nausea, rigidity, tremor, blepharospasm, balance and eye issues movement and vision issues, akathisia, sound sensitivity.
July 2019-August 2019 Fluoxetine Seemed to be causing movement disorder and tremors. Tapered off Fluoxetine. Was cut to 20 mg over a week period, then 10 over a week, then 5 for a week, then 5 every other day for a week. Felt withdrawal at month 2.
2006-2019 Alprazalom Have used sparingly over the years. Not currently using.

September 2019 Was prescribed Ativan for withdrawal symptoms and tremor. Did not help.

September 2019 Was prescribed Gabapentin for withdrawal symptoms and tremor. Scared to take it due to side effects and worried it will make things worse.

November 2019 Diazepam 2mg Took 2 doses, did not seem to help and caused leg cramps. Stopped Diazepam.

November 2019 Flexeril 5mg, taking 1.25 mg very sparingly when needed for rigidity and muscle cramping 

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SOcean

For the Ativan, forgot to mention, even the tiny dose I took felt very strong to me. Made me feel very strange and didn't do much to help. Just made me "out of it."  

 

I feel like things are getting worse instead of better. It has been 4 months off steroid and 3 months off prozac and I feel worse than ever with more shakes and jitteriness and feeling awful. Feel like I need to do something for relief. I don't think I can just keep enduring it. 


2005-2015 Fluoxetine 20mg (tried to get off it twice during that time) Had bad depression once, so was raised to 40mg. 
2016-June 2019  Fluoxetine 40mg Noticed tics, twitches and spasms in muscles right away, especially in face and behind eyes. Doctors blew it off. Noticed tremors and muscle weakness in arms developing over time, especially after dose increased to 40mg. Noticed nerve pain, parathesia, and muscle pain/stiffness, coordination issues with my hands starting around 2016. Eye pain and vision issues.

June 2019 Was prescribed prednisone 20mg for 3 days, for vaccine reaction. Had horrible reaction to it. Maybe combined with fluoxetine? Reaction included serotonin syndrome like symptoms - hyperreflexia, rigidity, tremor, etc. Doctor had me take it for 3 days even with symptoms. Have been ill ever since with continuing neurological problems, dizziness, nausea, rigidity, tremor, blepharospasm, balance and eye issues movement and vision issues, akathisia, sound sensitivity.
July 2019-August 2019 Fluoxetine Seemed to be causing movement disorder and tremors. Tapered off Fluoxetine. Was cut to 20 mg over a week period, then 10 over a week, then 5 for a week, then 5 every other day for a week. Felt withdrawal at month 2.
2006-2019 Alprazalom Have used sparingly over the years. Not currently using.

September 2019 Was prescribed Ativan for withdrawal symptoms and tremor. Did not help.

September 2019 Was prescribed Gabapentin for withdrawal symptoms and tremor. Scared to take it due to side effects and worried it will make things worse.

November 2019 Diazepam 2mg Took 2 doses, did not seem to help and caused leg cramps. Stopped Diazepam.

November 2019 Flexeril 5mg, taking 1.25 mg very sparingly when needed for rigidity and muscle cramping 

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Altostrata

What was the Ativan dosage?

 

Do you have any Prozac left?


This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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SOcean

I have prozac capsules left. 20mg. Ativan was .05 mg as as needed but I took a quarter of that. Maybe 4-6 times spread out over many days. 2 x day at most. Usually once. 


2005-2015 Fluoxetine 20mg (tried to get off it twice during that time) Had bad depression once, so was raised to 40mg. 
2016-June 2019  Fluoxetine 40mg Noticed tics, twitches and spasms in muscles right away, especially in face and behind eyes. Doctors blew it off. Noticed tremors and muscle weakness in arms developing over time, especially after dose increased to 40mg. Noticed nerve pain, parathesia, and muscle pain/stiffness, coordination issues with my hands starting around 2016. Eye pain and vision issues.

June 2019 Was prescribed prednisone 20mg for 3 days, for vaccine reaction. Had horrible reaction to it. Maybe combined with fluoxetine? Reaction included serotonin syndrome like symptoms - hyperreflexia, rigidity, tremor, etc. Doctor had me take it for 3 days even with symptoms. Have been ill ever since with continuing neurological problems, dizziness, nausea, rigidity, tremor, blepharospasm, balance and eye issues movement and vision issues, akathisia, sound sensitivity.
July 2019-August 2019 Fluoxetine Seemed to be causing movement disorder and tremors. Tapered off Fluoxetine. Was cut to 20 mg over a week period, then 10 over a week, then 5 for a week, then 5 every other day for a week. Felt withdrawal at month 2.
2006-2019 Alprazalom Have used sparingly over the years. Not currently using.

September 2019 Was prescribed Ativan for withdrawal symptoms and tremor. Did not help.

September 2019 Was prescribed Gabapentin for withdrawal symptoms and tremor. Scared to take it due to side effects and worried it will make things worse.

November 2019 Diazepam 2mg Took 2 doses, did not seem to help and caused leg cramps. Stopped Diazepam.

November 2019 Flexeril 5mg, taking 1.25 mg very sparingly when needed for rigidity and muscle cramping 

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SOcean
4 hours ago, Altostrata said:

This sounds like 40mg fluoxetine was too much for you and you were experiencing serotonin toxicity, which eventually caused muscle pain and weakness.

 

Serotonergic overstimulation also might affect appetite.

 

Adverse reactions to psychiatric drugs and withdrawal syndrome both represent neurological or systemic dysregulation. When people are in this state, we often see antibiotics causing severe adverse reactions. Steroids might as well.

 

At any rate, if you are hypersensitive from drug mishaps, which seems the case, you will not want to try anything at a normal dose.

I forgot to mention that after the prednisone. I had hyperreflexia for awhile. Could prednisone with prozac have caused serotonin syndrome? 

 

My sister recommended opening the 100mg Gabapentin capsule and cutting it into quarters, so I'd be taking about 25mg. The Psychiatrist prescribed it to "slow my brain down" because it is overstimulated. I'm scared that it is just going to cause more problems, but I don't know how to fix this. I saw that some of the side effects are tremors and movement problems. So I don't know what to do. I've been like this for 4 months with no progress. I just keep getting worse. Now I have the withdrawal and I'd like to get back on prozac but obviously don't want more even more motor problems. No idea what to do.

4 hours ago, Altostrata said:

 

 

 


2005-2015 Fluoxetine 20mg (tried to get off it twice during that time) Had bad depression once, so was raised to 40mg. 
2016-June 2019  Fluoxetine 40mg Noticed tics, twitches and spasms in muscles right away, especially in face and behind eyes. Doctors blew it off. Noticed tremors and muscle weakness in arms developing over time, especially after dose increased to 40mg. Noticed nerve pain, parathesia, and muscle pain/stiffness, coordination issues with my hands starting around 2016. Eye pain and vision issues.

June 2019 Was prescribed prednisone 20mg for 3 days, for vaccine reaction. Had horrible reaction to it. Maybe combined with fluoxetine? Reaction included serotonin syndrome like symptoms - hyperreflexia, rigidity, tremor, etc. Doctor had me take it for 3 days even with symptoms. Have been ill ever since with continuing neurological problems, dizziness, nausea, rigidity, tremor, blepharospasm, balance and eye issues movement and vision issues, akathisia, sound sensitivity.
July 2019-August 2019 Fluoxetine Seemed to be causing movement disorder and tremors. Tapered off Fluoxetine. Was cut to 20 mg over a week period, then 10 over a week, then 5 for a week, then 5 every other day for a week. Felt withdrawal at month 2.
2006-2019 Alprazalom Have used sparingly over the years. Not currently using.

September 2019 Was prescribed Ativan for withdrawal symptoms and tremor. Did not help.

September 2019 Was prescribed Gabapentin for withdrawal symptoms and tremor. Scared to take it due to side effects and worried it will make things worse.

November 2019 Diazepam 2mg Took 2 doses, did not seem to help and caused leg cramps. Stopped Diazepam.

November 2019 Flexeril 5mg, taking 1.25 mg very sparingly when needed for rigidity and muscle cramping 

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SOcean
18 hours ago, SHanson said:

I have prozac capsules left. 20mg. Ativan was .05 mg as as needed but I took a quarter of that. Maybe 4-6 times spread out over many days. 2 x day at most. Usually once. 

I think I also have a couple of 5mg fluoxetine tablets left. 

Edited by Shep
updated to reflect new username in textbox

2005-2015 Fluoxetine 20mg (tried to get off it twice during that time) Had bad depression once, so was raised to 40mg. 
2016-June 2019  Fluoxetine 40mg Noticed tics, twitches and spasms in muscles right away, especially in face and behind eyes. Doctors blew it off. Noticed tremors and muscle weakness in arms developing over time, especially after dose increased to 40mg. Noticed nerve pain, parathesia, and muscle pain/stiffness, coordination issues with my hands starting around 2016. Eye pain and vision issues.

June 2019 Was prescribed prednisone 20mg for 3 days, for vaccine reaction. Had horrible reaction to it. Maybe combined with fluoxetine? Reaction included serotonin syndrome like symptoms - hyperreflexia, rigidity, tremor, etc. Doctor had me take it for 3 days even with symptoms. Have been ill ever since with continuing neurological problems, dizziness, nausea, rigidity, tremor, blepharospasm, balance and eye issues movement and vision issues, akathisia, sound sensitivity.
July 2019-August 2019 Fluoxetine Seemed to be causing movement disorder and tremors. Tapered off Fluoxetine. Was cut to 20 mg over a week period, then 10 over a week, then 5 for a week, then 5 every other day for a week. Felt withdrawal at month 2.
2006-2019 Alprazalom Have used sparingly over the years. Not currently using.

September 2019 Was prescribed Ativan for withdrawal symptoms and tremor. Did not help.

September 2019 Was prescribed Gabapentin for withdrawal symptoms and tremor. Scared to take it due to side effects and worried it will make things worse.

November 2019 Diazepam 2mg Took 2 doses, did not seem to help and caused leg cramps. Stopped Diazepam.

November 2019 Flexeril 5mg, taking 1.25 mg very sparingly when needed for rigidity and muscle cramping 

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SOcean

Feeling like maybe I should try going back on a small amount of prozac? I have the 20 mg capsules and I have two 5mg pills.  Or is my system too messed up and activated from the steroid to tolerate? Tomorrow is my birthday. Wish I wasn't going through hell. 😞


2005-2015 Fluoxetine 20mg (tried to get off it twice during that time) Had bad depression once, so was raised to 40mg. 
2016-June 2019  Fluoxetine 40mg Noticed tics, twitches and spasms in muscles right away, especially in face and behind eyes. Doctors blew it off. Noticed tremors and muscle weakness in arms developing over time, especially after dose increased to 40mg. Noticed nerve pain, parathesia, and muscle pain/stiffness, coordination issues with my hands starting around 2016. Eye pain and vision issues.

June 2019 Was prescribed prednisone 20mg for 3 days, for vaccine reaction. Had horrible reaction to it. Maybe combined with fluoxetine? Reaction included serotonin syndrome like symptoms - hyperreflexia, rigidity, tremor, etc. Doctor had me take it for 3 days even with symptoms. Have been ill ever since with continuing neurological problems, dizziness, nausea, rigidity, tremor, blepharospasm, balance and eye issues movement and vision issues, akathisia, sound sensitivity.
July 2019-August 2019 Fluoxetine Seemed to be causing movement disorder and tremors. Tapered off Fluoxetine. Was cut to 20 mg over a week period, then 10 over a week, then 5 for a week, then 5 every other day for a week. Felt withdrawal at month 2.
2006-2019 Alprazalom Have used sparingly over the years. Not currently using.

September 2019 Was prescribed Ativan for withdrawal symptoms and tremor. Did not help.

September 2019 Was prescribed Gabapentin for withdrawal symptoms and tremor. Scared to take it due to side effects and worried it will make things worse.

November 2019 Diazepam 2mg Took 2 doses, did not seem to help and caused leg cramps. Stopped Diazepam.

November 2019 Flexeril 5mg, taking 1.25 mg very sparingly when needed for rigidity and muscle cramping 

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Shep

SOcean, are you completely off all drugs now? 


Drug free May 22, 2015 after 30 years of neuroleptics, benzos, z-drugs, so-called "anti"-depressants, and amphetamines 

 

My Success Story:  Shep's Success: "Leaving Plato's Cave"

 

And what is good, Phaedrus, and what is not good — need we ask anyone to tell us these things? ~ Zen and the Art of Motorcycle Maintenance


I am not a medical professional and this is not medical advice, but simply information based on my own experience, as well as other members who have survived these drugs.

 

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SOcean
20 minutes ago, Shep said:

SOcean, are you completely off all drugs now? 

Yes, at the moment I'm not taking anything, but obviously not doing well. I have an appt with Psych on Weds and I'm sure they'll want me back on something because of the situation and I'm not sure what to do. They may prescribe a different AD. 

Edited by SOcean
More info

2005-2015 Fluoxetine 20mg (tried to get off it twice during that time) Had bad depression once, so was raised to 40mg. 
2016-June 2019  Fluoxetine 40mg Noticed tics, twitches and spasms in muscles right away, especially in face and behind eyes. Doctors blew it off. Noticed tremors and muscle weakness in arms developing over time, especially after dose increased to 40mg. Noticed nerve pain, parathesia, and muscle pain/stiffness, coordination issues with my hands starting around 2016. Eye pain and vision issues.

June 2019 Was prescribed prednisone 20mg for 3 days, for vaccine reaction. Had horrible reaction to it. Maybe combined with fluoxetine? Reaction included serotonin syndrome like symptoms - hyperreflexia, rigidity, tremor, etc. Doctor had me take it for 3 days even with symptoms. Have been ill ever since with continuing neurological problems, dizziness, nausea, rigidity, tremor, blepharospasm, balance and eye issues movement and vision issues, akathisia, sound sensitivity.
July 2019-August 2019 Fluoxetine Seemed to be causing movement disorder and tremors. Tapered off Fluoxetine. Was cut to 20 mg over a week period, then 10 over a week, then 5 for a week, then 5 every other day for a week. Felt withdrawal at month 2.
2006-2019 Alprazalom Have used sparingly over the years. Not currently using.

September 2019 Was prescribed Ativan for withdrawal symptoms and tremor. Did not help.

September 2019 Was prescribed Gabapentin for withdrawal symptoms and tremor. Scared to take it due to side effects and worried it will make things worse.

November 2019 Diazepam 2mg Took 2 doses, did not seem to help and caused leg cramps. Stopped Diazepam.

November 2019 Flexeril 5mg, taking 1.25 mg very sparingly when needed for rigidity and muscle cramping 

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SOcean

Also, I'm having trouble with my eyes. My pupils have been smaller since coming off (I read that SSRI'S dilate, so they've probably been dilated for many years) and I've had blurry vision and just different vision since the steroid too. I feel like I have a hard time focusing. I'm sensitive to colors. Things look weird. Driving feels weird. Super sensitive to light and visuals. I went to eye doctor and of course they didn't find anything or do anything helpful. I have eye pain. I feel like my eyes are strained, muscles behind them have tremors too, and maybe aren't working right. And like I have a haze or veil or everything. 


2005-2015 Fluoxetine 20mg (tried to get off it twice during that time) Had bad depression once, so was raised to 40mg. 
2016-June 2019  Fluoxetine 40mg Noticed tics, twitches and spasms in muscles right away, especially in face and behind eyes. Doctors blew it off. Noticed tremors and muscle weakness in arms developing over time, especially after dose increased to 40mg. Noticed nerve pain, parathesia, and muscle pain/stiffness, coordination issues with my hands starting around 2016. Eye pain and vision issues.

June 2019 Was prescribed prednisone 20mg for 3 days, for vaccine reaction. Had horrible reaction to it. Maybe combined with fluoxetine? Reaction included serotonin syndrome like symptoms - hyperreflexia, rigidity, tremor, etc. Doctor had me take it for 3 days even with symptoms. Have been ill ever since with continuing neurological problems, dizziness, nausea, rigidity, tremor, blepharospasm, balance and eye issues movement and vision issues, akathisia, sound sensitivity.
July 2019-August 2019 Fluoxetine Seemed to be causing movement disorder and tremors. Tapered off Fluoxetine. Was cut to 20 mg over a week period, then 10 over a week, then 5 for a week, then 5 every other day for a week. Felt withdrawal at month 2.
2006-2019 Alprazalom Have used sparingly over the years. Not currently using.

September 2019 Was prescribed Ativan for withdrawal symptoms and tremor. Did not help.

September 2019 Was prescribed Gabapentin for withdrawal symptoms and tremor. Scared to take it due to side effects and worried it will make things worse.

November 2019 Diazepam 2mg Took 2 doses, did not seem to help and caused leg cramps. Stopped Diazepam.

November 2019 Flexeril 5mg, taking 1.25 mg very sparingly when needed for rigidity and muscle cramping 

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SOcean

Eye Problems, Tics and Twitches, will it get worse?

 

I'm having trouble with my eyes since a bad reaction to a steroid and also since coming of Prozac. My pupils have been smaller since coming off (I read that SSRI'S dilate, so they've probably been dilated for many years) and I've had blurry vision and just "different" vision since the steroid too. Kind of like having a permanent migraine. I feel like I have a hard time focusing. I'm sensitive to colors. Things look weird. Driving feels weird. Super sensitive to light and visuals. I went to eye doctor and of course they didn't find anything or do anything helpful. I have eye pain. I feel like my eyes are strained, muscles behind them have tremors too, and maybe aren't working right. And like I have a haze or veil or everything. I'm scared obviously and don't know what to do. Also facial tics and spasms seem to be getting worse, as well as other tremors. 

 

Edited by ChessieCat
added topic title

2005-2015 Fluoxetine 20mg (tried to get off it twice during that time) Had bad depression once, so was raised to 40mg. 
2016-June 2019  Fluoxetine 40mg Noticed tics, twitches and spasms in muscles right away, especially in face and behind eyes. Doctors blew it off. Noticed tremors and muscle weakness in arms developing over time, especially after dose increased to 40mg. Noticed nerve pain, parathesia, and muscle pain/stiffness, coordination issues with my hands starting around 2016. Eye pain and vision issues.

June 2019 Was prescribed prednisone 20mg for 3 days, for vaccine reaction. Had horrible reaction to it. Maybe combined with fluoxetine? Reaction included serotonin syndrome like symptoms - hyperreflexia, rigidity, tremor, etc. Doctor had me take it for 3 days even with symptoms. Have been ill ever since with continuing neurological problems, dizziness, nausea, rigidity, tremor, blepharospasm, balance and eye issues movement and vision issues, akathisia, sound sensitivity.
July 2019-August 2019 Fluoxetine Seemed to be causing movement disorder and tremors. Tapered off Fluoxetine. Was cut to 20 mg over a week period, then 10 over a week, then 5 for a week, then 5 every other day for a week. Felt withdrawal at month 2.
2006-2019 Alprazalom Have used sparingly over the years. Not currently using.

September 2019 Was prescribed Ativan for withdrawal symptoms and tremor. Did not help.

September 2019 Was prescribed Gabapentin for withdrawal symptoms and tremor. Scared to take it due to side effects and worried it will make things worse.

November 2019 Diazepam 2mg Took 2 doses, did not seem to help and caused leg cramps. Stopped Diazepam.

November 2019 Flexeril 5mg, taking 1.25 mg very sparingly when needed for rigidity and muscle cramping 

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Shep

SOcean, I received your PM but am responding here so everything is in your thread. For ideas on how to talk to your doctor when you see him/her on Wednesday, please see:

 

How do you talk to a doctor about tapering and withdrawal?

 

Withdrawal dialogues & encouragement

 

You don't have to take anything that's offered. It's possible you may want to reinstate the Prozac (I've reported your post asking about that for other mods to give feedback for you), but since we don't recommend other drugs to "fix" withdrawal, that would be the only drug in play at this point. 

 

 


Drug free May 22, 2015 after 30 years of neuroleptics, benzos, z-drugs, so-called "anti"-depressants, and amphetamines 

 

My Success Story:  Shep's Success: "Leaving Plato's Cave"

 

And what is good, Phaedrus, and what is not good — need we ask anyone to tell us these things? ~ Zen and the Art of Motorcycle Maintenance


I am not a medical professional and this is not medical advice, but simply information based on my own experience, as well as other members who have survived these drugs.

 

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SOcean
5 minutes ago, Shep said:

SOcean, I received your PM but am responding here so everything is in your thread. For ideas on how to talk to your doctor when you see him/her on Wednesday, please see:

 

How do you talk to a doctor about tapering and withdrawal?

 

Withdrawal dialogues & encouragement

 

You don't have to take anything that's offered. It's possible you may want to reinstate the Prozac (I've reported your post asking about that for other mods to give feedback for you), but since we don't recommend other drugs to "fix" withdrawal, that would be the only drug in play at this point. 

 

 

Thank you. How do I make the Psych understand that? They may not want to do that because the Prozac was causing a movement disorder. Also, they said it was too activating for me, which is true, but I really don't think trying something else is a good idea, like you mentioned. 


2005-2015 Fluoxetine 20mg (tried to get off it twice during that time) Had bad depression once, so was raised to 40mg. 
2016-June 2019  Fluoxetine 40mg Noticed tics, twitches and spasms in muscles right away, especially in face and behind eyes. Doctors blew it off. Noticed tremors and muscle weakness in arms developing over time, especially after dose increased to 40mg. Noticed nerve pain, parathesia, and muscle pain/stiffness, coordination issues with my hands starting around 2016. Eye pain and vision issues.

June 2019 Was prescribed prednisone 20mg for 3 days, for vaccine reaction. Had horrible reaction to it. Maybe combined with fluoxetine? Reaction included serotonin syndrome like symptoms - hyperreflexia, rigidity, tremor, etc. Doctor had me take it for 3 days even with symptoms. Have been ill ever since with continuing neurological problems, dizziness, nausea, rigidity, tremor, blepharospasm, balance and eye issues movement and vision issues, akathisia, sound sensitivity.
July 2019-August 2019 Fluoxetine Seemed to be causing movement disorder and tremors. Tapered off Fluoxetine. Was cut to 20 mg over a week period, then 10 over a week, then 5 for a week, then 5 every other day for a week. Felt withdrawal at month 2.
2006-2019 Alprazalom Have used sparingly over the years. Not currently using.

September 2019 Was prescribed Ativan for withdrawal symptoms and tremor. Did not help.

September 2019 Was prescribed Gabapentin for withdrawal symptoms and tremor. Scared to take it due to side effects and worried it will make things worse.

November 2019 Diazepam 2mg Took 2 doses, did not seem to help and caused leg cramps. Stopped Diazepam.

November 2019 Flexeril 5mg, taking 1.25 mg very sparingly when needed for rigidity and muscle cramping 

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SOcean
1 minute ago, SOcean said:

Thank you. How do I make the Psych understand that? They may not want to do that because the Prozac was causing a movement disorder. Also, they said it was too activating for me, which is true, but I really don't think trying something else is a good idea, like you mentioned. 

Ok. Thank you. Also, I do have a lot of prozac left over, but I'm guessing it isn't advised to reinstate on your own? 


2005-2015 Fluoxetine 20mg (tried to get off it twice during that time) Had bad depression once, so was raised to 40mg. 
2016-June 2019  Fluoxetine 40mg Noticed tics, twitches and spasms in muscles right away, especially in face and behind eyes. Doctors blew it off. Noticed tremors and muscle weakness in arms developing over time, especially after dose increased to 40mg. Noticed nerve pain, parathesia, and muscle pain/stiffness, coordination issues with my hands starting around 2016. Eye pain and vision issues.

June 2019 Was prescribed prednisone 20mg for 3 days, for vaccine reaction. Had horrible reaction to it. Maybe combined with fluoxetine? Reaction included serotonin syndrome like symptoms - hyperreflexia, rigidity, tremor, etc. Doctor had me take it for 3 days even with symptoms. Have been ill ever since with continuing neurological problems, dizziness, nausea, rigidity, tremor, blepharospasm, balance and eye issues movement and vision issues, akathisia, sound sensitivity.
July 2019-August 2019 Fluoxetine Seemed to be causing movement disorder and tremors. Tapered off Fluoxetine. Was cut to 20 mg over a week period, then 10 over a week, then 5 for a week, then 5 every other day for a week. Felt withdrawal at month 2.
2006-2019 Alprazalom Have used sparingly over the years. Not currently using.

September 2019 Was prescribed Ativan for withdrawal symptoms and tremor. Did not help.

September 2019 Was prescribed Gabapentin for withdrawal symptoms and tremor. Scared to take it due to side effects and worried it will make things worse.

November 2019 Diazepam 2mg Took 2 doses, did not seem to help and caused leg cramps. Stopped Diazepam.

November 2019 Flexeril 5mg, taking 1.25 mg very sparingly when needed for rigidity and muscle cramping 

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SOcean
12 minutes ago, Shep said:

SOcean, I received your PM but am responding here so everything is in your thread. For ideas on how to talk to your doctor when you see him/her on Wednesday, please see:

 

How do you talk to a doctor about tapering and withdrawal?

 

Withdrawal dialogues & encouragement

 

You don't have to take anything that's offered. It's possible you may want to reinstate the Prozac (I've reported your post asking about that for other mods to give feedback for you), but since we don't recommend other drugs to "fix" withdrawal, that would be the only drug in play at this point. 

 

 

I've been worried about reinstating it because prozac gave me tremor and other movement problems, among other problems, but now that I'm off, I still have the tremor and every other issue, and it seems to be getting worse. 


2005-2015 Fluoxetine 20mg (tried to get off it twice during that time) Had bad depression once, so was raised to 40mg. 
2016-June 2019  Fluoxetine 40mg Noticed tics, twitches and spasms in muscles right away, especially in face and behind eyes. Doctors blew it off. Noticed tremors and muscle weakness in arms developing over time, especially after dose increased to 40mg. Noticed nerve pain, parathesia, and muscle pain/stiffness, coordination issues with my hands starting around 2016. Eye pain and vision issues.

June 2019 Was prescribed prednisone 20mg for 3 days, for vaccine reaction. Had horrible reaction to it. Maybe combined with fluoxetine? Reaction included serotonin syndrome like symptoms - hyperreflexia, rigidity, tremor, etc. Doctor had me take it for 3 days even with symptoms. Have been ill ever since with continuing neurological problems, dizziness, nausea, rigidity, tremor, blepharospasm, balance and eye issues movement and vision issues, akathisia, sound sensitivity.
July 2019-August 2019 Fluoxetine Seemed to be causing movement disorder and tremors. Tapered off Fluoxetine. Was cut to 20 mg over a week period, then 10 over a week, then 5 for a week, then 5 every other day for a week. Felt withdrawal at month 2.
2006-2019 Alprazalom Have used sparingly over the years. Not currently using.

September 2019 Was prescribed Ativan for withdrawal symptoms and tremor. Did not help.

September 2019 Was prescribed Gabapentin for withdrawal symptoms and tremor. Scared to take it due to side effects and worried it will make things worse.

November 2019 Diazepam 2mg Took 2 doses, did not seem to help and caused leg cramps. Stopped Diazepam.

November 2019 Flexeril 5mg, taking 1.25 mg very sparingly when needed for rigidity and muscle cramping 

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Altostrata

If you are sensitive to light, you should reduce stimulation by wearing tinted glasses even indoors and working at the computer.

 

See Post-withdrawal nervous system hypersensitivity or kindling

 

Increased sensitivity to light, noise, sound, exercise etc

 

Inactivity may make sympathetic nervous system hypersensitive...

 

Light-sensitive? Try blocking out blue light

 

Computer Program Adjusts Blue Light to Time of Day

 

Increased sensitivity to emotional content: TV, violent movies, music, conversations.

 

On 11/3/2019 at 9:55 AM, SOcean said:

For the Ativan, forgot to mention, even the tiny dose I took felt very strong to me. Made me feel very strange and didn't do much to help. Just made me "out of it."  

 

How did the Ativan affect the tremors and other symptoms that most distress you?

 

If your symptoms are withdrawal symptoms from Prozac, it's possible reinstatement of a very small amount of Prozac, such as 0.5mg, might help -- but if your tremors, etc. are from an adverse reaction to the drug, I have reservations about exposing you to more of it, or any SSRI. It's up to you to decide if you want to take this risk.

 

We cannot tell if your symptoms are from withdrawal or an adverse reaction to fluoxetine exacerbated by an adverse reaction to prednisone. (See the Drug Interactions Checker https://www.drugs.com/drug_interactions.php ) We seem to agree with your doctors about that, which is unusual. The question is, what to do about a nervous system that's riled up so?

 

Anti-seizure drugs such as benzodiazepines, gabapentin, or lamotrigine dampen nervous system activity. However, in hypersensitive nervous systems, dosages need to be very small. Few doctors understand this. It is possible a much lower dose of Ativan might help. As benzodiazepines incur their own risks, ordinarily we don't encourage people to take them, but it's possible that's your best option. Or, a very small amount of gabapentin. Again, your decision.

 

You might be interested in One theory of antidepressant withdrawal syndrome

Lamictal (lamotrigine) to calm post-discontinuation withdrawal symptoms

Tips for tapering off Lamictal (lamotrigine)

 

Taken regularly for even a few weeks, all of these drugs need to be tapered when you want to go off. But it's possible that if your nervous system is calmed for some months, you will be able to carefully taper, feeling relatively normal, though you probably will be hypersensitive to a lot of things for a long time.

 

When working with doctors, you'll have to be very definite that you are hypersensitive to drugs and want to work with only very small dosages, probably in liquid form. Most will start talking about therapeutic dose blah blah blah. If you can't get them to grasp your request, just get them to order a prescription liquid or compounded liquid (if you can afford it) so you can "gradually titrate up in dosage." If prescription or compounded liquid is not available, requesting the lowest dose tablet or capsule "to start" will enable you to split tablets or make your own liquid in order to take a very small dose.


This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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SOcean

I would say the Ativan calmed things down a little not everything, but some,  but I really didn't like how it made me feel. And I also made my eyes worse. My eyes have really been bothering me. They feel hypersensitive to everything and also I feel like I am having spasms and cramps behind them, and also the tremors in my head and neck, and I feel like my vision is weird, even though I did ok in a regular eye exam. But it definitely isn't normal to me. I'm having it checked again today but I feel like they won't find anything, once again. Maybe they don't know what to look for. 

 

For the Gabapentin, can I use it as needed or do I have to take it 3 times a day like they want me to? Will the withdrawal from it be as bad as this? Also noticed Gabapentin has a risk of dystonia, tremors, and eye movement problems, and I thought I saw akathisia? Which scares me, but it is also prescribed for tremors too. So I don't know what to think about that. I also saw that Gabapentin can cause eye issues. I feel like I can't win here but need to do something so may try the Gabapentin. Wish I could just get back on a little Prozac but I do believe it caused these tremors and movement problems. What dose would you recommend for the Gabapentin? 


2005-2015 Fluoxetine 20mg (tried to get off it twice during that time) Had bad depression once, so was raised to 40mg. 
2016-June 2019  Fluoxetine 40mg Noticed tics, twitches and spasms in muscles right away, especially in face and behind eyes. Doctors blew it off. Noticed tremors and muscle weakness in arms developing over time, especially after dose increased to 40mg. Noticed nerve pain, parathesia, and muscle pain/stiffness, coordination issues with my hands starting around 2016. Eye pain and vision issues.

June 2019 Was prescribed prednisone 20mg for 3 days, for vaccine reaction. Had horrible reaction to it. Maybe combined with fluoxetine? Reaction included serotonin syndrome like symptoms - hyperreflexia, rigidity, tremor, etc. Doctor had me take it for 3 days even with symptoms. Have been ill ever since with continuing neurological problems, dizziness, nausea, rigidity, tremor, blepharospasm, balance and eye issues movement and vision issues, akathisia, sound sensitivity.
July 2019-August 2019 Fluoxetine Seemed to be causing movement disorder and tremors. Tapered off Fluoxetine. Was cut to 20 mg over a week period, then 10 over a week, then 5 for a week, then 5 every other day for a week. Felt withdrawal at month 2.
2006-2019 Alprazalom Have used sparingly over the years. Not currently using.

September 2019 Was prescribed Ativan for withdrawal symptoms and tremor. Did not help.

September 2019 Was prescribed Gabapentin for withdrawal symptoms and tremor. Scared to take it due to side effects and worried it will make things worse.

November 2019 Diazepam 2mg Took 2 doses, did not seem to help and caused leg cramps. Stopped Diazepam.

November 2019 Flexeril 5mg, taking 1.25 mg very sparingly when needed for rigidity and muscle cramping 

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Altostrata

I don't know if gabapentin will help you. Please see my comments about light sensitivity.

 

Do you have any Ativan left? Since you saw some benefit from Ativan, this might be what you want to try now.

On 11/3/2019 at 9:50 AM, SOcean said:

With the Ativan I took 1/4 of a .05 pill a few times, spaced out by days. I don't feel any different since stopping it. 

 

Was that a 0.5mg Ativan tablet? @Shep, SOcean found 1/4 tablets too strong, what's a good titration?


This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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SOcean
5 minutes ago, Altostrata said:

Was that a 0.5mg Ativan tablet? @Shep, SOcean found 1/4 tablets too strong, what's a good titration?

Yes, that was .05mg Ativan and I took 1/4. I just saw one of my neurologists at Mayo. She was against the Ativan of course, suggested the Gabapentin in liquid form and prescribed that. Will probably pick it up. Scared to take it though. She said if that doesn't work, Propanolol. I hate this. I don't want to take anything. I really appreciate all the help here. If I do try the Gabapentin, how much should I try? 5mg? Normal dose is 100mg.  


2005-2015 Fluoxetine 20mg (tried to get off it twice during that time) Had bad depression once, so was raised to 40mg. 
2016-June 2019  Fluoxetine 40mg Noticed tics, twitches and spasms in muscles right away, especially in face and behind eyes. Doctors blew it off. Noticed tremors and muscle weakness in arms developing over time, especially after dose increased to 40mg. Noticed nerve pain, parathesia, and muscle pain/stiffness, coordination issues with my hands starting around 2016. Eye pain and vision issues.

June 2019 Was prescribed prednisone 20mg for 3 days, for vaccine reaction. Had horrible reaction to it. Maybe combined with fluoxetine? Reaction included serotonin syndrome like symptoms - hyperreflexia, rigidity, tremor, etc. Doctor had me take it for 3 days even with symptoms. Have been ill ever since with continuing neurological problems, dizziness, nausea, rigidity, tremor, blepharospasm, balance and eye issues movement and vision issues, akathisia, sound sensitivity.
July 2019-August 2019 Fluoxetine Seemed to be causing movement disorder and tremors. Tapered off Fluoxetine. Was cut to 20 mg over a week period, then 10 over a week, then 5 for a week, then 5 every other day for a week. Felt withdrawal at month 2.
2006-2019 Alprazalom Have used sparingly over the years. Not currently using.

September 2019 Was prescribed Ativan for withdrawal symptoms and tremor. Did not help.

September 2019 Was prescribed Gabapentin for withdrawal symptoms and tremor. Scared to take it due to side effects and worried it will make things worse.

November 2019 Diazepam 2mg Took 2 doses, did not seem to help and caused leg cramps. Stopped Diazepam.

November 2019 Flexeril 5mg, taking 1.25 mg very sparingly when needed for rigidity and muscle cramping 

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Altostrata

Was it a half-milligram Ativan tablet? Do you have any Ativan left?

 

Doctors don't like to prescribe benzos like Ativan now because they're technically addictive, but gabapentin is equally so.


This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

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Shep
10 hours ago, Altostrata said:

Was that a 0.5mg Ativan tablet? @Shep, SOcean found 1/4 tablets too strong, what's a good titration?

 

@SOcean How often were you taking Ativan? You mention every few days, but was that several days in a row and then you'd stop for a few days?

 

The reason I'm asking is to gage if you may have become dependent on it. 

 

13 hours ago, SOcean said:

I would say the Ativan calmed things down a little not everything, but some,  but I really didn't like how it made me feel. And I also made my eyes worse.

 

Have you been off Ativan completely since September? Have your eyes gotten better or worse since September? 


Drug free May 22, 2015 after 30 years of neuroleptics, benzos, z-drugs, so-called "anti"-depressants, and amphetamines 

 

My Success Story:  Shep's Success: "Leaving Plato's Cave"

 

And what is good, Phaedrus, and what is not good — need we ask anyone to tell us these things? ~ Zen and the Art of Motorcycle Maintenance


I am not a medical professional and this is not medical advice, but simply information based on my own experience, as well as other members who have survived these drugs.

 

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SOcean
4 hours ago, Shep said:

 

@SOcean How often were you taking Ativan? You mention every few days, but was that several days in a row and then you'd stop for a few days?

 

Have you been off Ativan completely since September? Have your eyes gotten better or worse since September? 

For the Ativan. It wasn't several days in a row. I would try it on a very bad day and wouldn't like how it made me feel, so I wouldn't take it anymore for a few days or several days. And I took such a tiny amount. I think I've only taken 1 or 2 pills total from the prescription, because I was cutting them so small. I really don't think it is that. I have felt like this to an extent since the steroid. I think I've felt like this to an extent even on the prozac, but I wasn't really aware of it. I would exercise a lot to get rid of the feeling. But it became really intolerable after about the 2 month mark off Prozac.

 

My eyes have been weird since I took the steroid in June. It made me hyper sensitive to everything. Since I stopped the Prozac in August they've gotten worse, and they just seem to keep getting worse even though eye doctor cant find anything. I noticed after a couple months off Prozac my pupils got smaller. I think they were dilated for years. 

 


2005-2015 Fluoxetine 20mg (tried to get off it twice during that time) Had bad depression once, so was raised to 40mg. 
2016-June 2019  Fluoxetine 40mg Noticed tics, twitches and spasms in muscles right away, especially in face and behind eyes. Doctors blew it off. Noticed tremors and muscle weakness in arms developing over time, especially after dose increased to 40mg. Noticed nerve pain, parathesia, and muscle pain/stiffness, coordination issues with my hands starting around 2016. Eye pain and vision issues.

June 2019 Was prescribed prednisone 20mg for 3 days, for vaccine reaction. Had horrible reaction to it. Maybe combined with fluoxetine? Reaction included serotonin syndrome like symptoms - hyperreflexia, rigidity, tremor, etc. Doctor had me take it for 3 days even with symptoms. Have been ill ever since with continuing neurological problems, dizziness, nausea, rigidity, tremor, blepharospasm, balance and eye issues movement and vision issues, akathisia, sound sensitivity.
July 2019-August 2019 Fluoxetine Seemed to be causing movement disorder and tremors. Tapered off Fluoxetine. Was cut to 20 mg over a week period, then 10 over a week, then 5 for a week, then 5 every other day for a week. Felt withdrawal at month 2.
2006-2019 Alprazalom Have used sparingly over the years. Not currently using.

September 2019 Was prescribed Ativan for withdrawal symptoms and tremor. Did not help.

September 2019 Was prescribed Gabapentin for withdrawal symptoms and tremor. Scared to take it due to side effects and worried it will make things worse.

November 2019 Diazepam 2mg Took 2 doses, did not seem to help and caused leg cramps. Stopped Diazepam.

November 2019 Flexeril 5mg, taking 1.25 mg very sparingly when needed for rigidity and muscle cramping 

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Altostrata

@Shep since the Ativan was too strong but seemed to help, probably when it was wearing off, I am thinking a tiny bit of Ativan in divided doses might help. Of course, SO would have to taper the Ativan eventually.


This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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SOcean
3 hours ago, Altostrata said:

@Shep since the Ativan was too strong but seemed to help, probably when it was wearing off, I am thinking a tiny bit of Ativan in divided doses might help. Of course, SO would have to taper the Ativan eventually.

So, what would the dose be, do you think? Since I was already only taking 1/4 of .05? 


2005-2015 Fluoxetine 20mg (tried to get off it twice during that time) Had bad depression once, so was raised to 40mg. 
2016-June 2019  Fluoxetine 40mg Noticed tics, twitches and spasms in muscles right away, especially in face and behind eyes. Doctors blew it off. Noticed tremors and muscle weakness in arms developing over time, especially after dose increased to 40mg. Noticed nerve pain, parathesia, and muscle pain/stiffness, coordination issues with my hands starting around 2016. Eye pain and vision issues.

June 2019 Was prescribed prednisone 20mg for 3 days, for vaccine reaction. Had horrible reaction to it. Maybe combined with fluoxetine? Reaction included serotonin syndrome like symptoms - hyperreflexia, rigidity, tremor, etc. Doctor had me take it for 3 days even with symptoms. Have been ill ever since with continuing neurological problems, dizziness, nausea, rigidity, tremor, blepharospasm, balance and eye issues movement and vision issues, akathisia, sound sensitivity.
July 2019-August 2019 Fluoxetine Seemed to be causing movement disorder and tremors. Tapered off Fluoxetine. Was cut to 20 mg over a week period, then 10 over a week, then 5 for a week, then 5 every other day for a week. Felt withdrawal at month 2.
2006-2019 Alprazalom Have used sparingly over the years. Not currently using.

September 2019 Was prescribed Ativan for withdrawal symptoms and tremor. Did not help.

September 2019 Was prescribed Gabapentin for withdrawal symptoms and tremor. Scared to take it due to side effects and worried it will make things worse.

November 2019 Diazepam 2mg Took 2 doses, did not seem to help and caused leg cramps. Stopped Diazepam.

November 2019 Flexeril 5mg, taking 1.25 mg very sparingly when needed for rigidity and muscle cramping 

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Shep
14 hours ago, SOcean said:

So, what would the dose be, do you think? Since I was already only taking 1/4 of .05? 

 

I think you mean .5 mg, not .05 mg. Please verify. 

 

If it was .5 mg, than 1/4 of .5 mg would be .125 mg. 

 

On 11/3/2019 at 12:55 PM, SOcean said:

For the Ativan, forgot to mention, even the tiny dose I took felt very strong to me. Made me feel very strange and didn't do much to help. Just made me "out of it."  

 

You may want to try 1/8 of a pill. If this is hard to get accurately, you could try using a scale. 

 

For using a scale, please see:

 

Using a digital scale to measure doses

 

A scale that many members recommend is this one:

 

Gemini 20 Scale

 

If this 1/8 of a pill still feels strong and makes you feel strange, then you won't want to continue it. 

 

Please let us know what you decide and how you're feeling.


Drug free May 22, 2015 after 30 years of neuroleptics, benzos, z-drugs, so-called "anti"-depressants, and amphetamines 

 

My Success Story:  Shep's Success: "Leaving Plato's Cave"

 

And what is good, Phaedrus, and what is not good — need we ask anyone to tell us these things? ~ Zen and the Art of Motorcycle Maintenance


I am not a medical professional and this is not medical advice, but simply information based on my own experience, as well as other members who have survived these drugs.

 

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Shep

How are you doing, SOcean? 


Drug free May 22, 2015 after 30 years of neuroleptics, benzos, z-drugs, so-called "anti"-depressants, and amphetamines 

 

My Success Story:  Shep's Success: "Leaving Plato's Cave"

 

And what is good, Phaedrus, and what is not good — need we ask anyone to tell us these things? ~ Zen and the Art of Motorcycle Maintenance


I am not a medical professional and this is not medical advice, but simply information based on my own experience, as well as other members who have survived these drugs.

 

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SOcean
3 hours ago, Shep said:

How are you doing, SOcean? 

Hi Shep. Thanks for asking. Not wonderful. I have still been going to doctor after doctor trying to figure out my neurological issues and most are unhelpful and unwilling to dig deep enough to figure things out. I am so frustrated. I keep getting passed around to all different kinds of specialists, and I still don't have many answers. Mayo Clinic has been horrible. It's like they don't even care. After I started taking Prozac all those years ago, I started having muscle spasms and internal shaking in my neck, shoulders, face and behind my eyes. Over the years it got worse and then after the steroid it is nonstop now. I also have muscle weakness and stiffness and balance issues. My hands and arms feel weak and disconnected. And I have full on tremors now inside and out since the steroid, so I've been going to neuro after neuro to figure it out and not many have been much help. It is very distressing. The eye tremors press on my eyes. Especially the left, and causes eye pain and even more blurriness, in that eye, and I am concerned about that. But as usual the eye doctors blow it off. I have arm and hand cramps sometimes and feel like I can't use my hands. Also, I found out I probably have EDS and POTS syndrome, and am now trying to find a specialist to help me with that. I apparently have pretty bad arthritis already from EDS hypermobility, even though I'm only 39. So yeah, things aren't great.

 

Regarding the withdrawal situation, things have been a teeny bit better as far as the akathisia/anxiety. I did try an 8th of a pill of Ativan. I didn't feel it made things any better. I don't like the way Ativan makes me feel. I feel like I do better on Xanax but I know that Xanax is shorter acting and more addictive. I tried a very, very small amount of Gabapentin, like 5mg for 2 nights. Each night I woke up at 4am with a tight chest and a panic attack and feeling cold inside. The tight chest lasted until the evening.  I also had diarrhea each morning. I stopped taking it and didn't wake up at 4am for next 3 nights. So I'm guessing it was that. I really don't know what to do. It is like I can't take any med. I feel like they all make things worse. But I have this over-active nervous system that won't calm down. And the tremors that I get no relief from. I want to go on tremor meds but they have bad side effects too. The main one, Propanolol, lowers bp I think, when I already have too low bp. I really don't know what to do at this point. It is a nightmare. Sorry for the long post. Any ideas on any other drugs?


2005-2015 Fluoxetine 20mg (tried to get off it twice during that time) Had bad depression once, so was raised to 40mg. 
2016-June 2019  Fluoxetine 40mg Noticed tics, twitches and spasms in muscles right away, especially in face and behind eyes. Doctors blew it off. Noticed tremors and muscle weakness in arms developing over time, especially after dose increased to 40mg. Noticed nerve pain, parathesia, and muscle pain/stiffness, coordination issues with my hands starting around 2016. Eye pain and vision issues.

June 2019 Was prescribed prednisone 20mg for 3 days, for vaccine reaction. Had horrible reaction to it. Maybe combined with fluoxetine? Reaction included serotonin syndrome like symptoms - hyperreflexia, rigidity, tremor, etc. Doctor had me take it for 3 days even with symptoms. Have been ill ever since with continuing neurological problems, dizziness, nausea, rigidity, tremor, blepharospasm, balance and eye issues movement and vision issues, akathisia, sound sensitivity.
July 2019-August 2019 Fluoxetine Seemed to be causing movement disorder and tremors. Tapered off Fluoxetine. Was cut to 20 mg over a week period, then 10 over a week, then 5 for a week, then 5 every other day for a week. Felt withdrawal at month 2.
2006-2019 Alprazalom Have used sparingly over the years. Not currently using.

September 2019 Was prescribed Ativan for withdrawal symptoms and tremor. Did not help.

September 2019 Was prescribed Gabapentin for withdrawal symptoms and tremor. Scared to take it due to side effects and worried it will make things worse.

November 2019 Diazepam 2mg Took 2 doses, did not seem to help and caused leg cramps. Stopped Diazepam.

November 2019 Flexeril 5mg, taking 1.25 mg very sparingly when needed for rigidity and muscle cramping 

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SOcean
11 hours ago, Shep said:

How are you doing, SOcean? 

Went to PCP today. He wants to put me on Restoril or Mirtazapine now. Have psych appt next week as well so will probably wait for that. Would either of those be appropriate for me do you think? Worried about Mirtazapine because it is technically an SSRI? Thought it might worsen movement disorder. Feeling horrible lately still and my eyes seem to just keep getting blurrier and blurrier. Very lightheaded too. Have eye appt on Weds. Doubt they'll find anything. 


2005-2015 Fluoxetine 20mg (tried to get off it twice during that time) Had bad depression once, so was raised to 40mg. 
2016-June 2019  Fluoxetine 40mg Noticed tics, twitches and spasms in muscles right away, especially in face and behind eyes. Doctors blew it off. Noticed tremors and muscle weakness in arms developing over time, especially after dose increased to 40mg. Noticed nerve pain, parathesia, and muscle pain/stiffness, coordination issues with my hands starting around 2016. Eye pain and vision issues.

June 2019 Was prescribed prednisone 20mg for 3 days, for vaccine reaction. Had horrible reaction to it. Maybe combined with fluoxetine? Reaction included serotonin syndrome like symptoms - hyperreflexia, rigidity, tremor, etc. Doctor had me take it for 3 days even with symptoms. Have been ill ever since with continuing neurological problems, dizziness, nausea, rigidity, tremor, blepharospasm, balance and eye issues movement and vision issues, akathisia, sound sensitivity.
July 2019-August 2019 Fluoxetine Seemed to be causing movement disorder and tremors. Tapered off Fluoxetine. Was cut to 20 mg over a week period, then 10 over a week, then 5 for a week, then 5 every other day for a week. Felt withdrawal at month 2.
2006-2019 Alprazalom Have used sparingly over the years. Not currently using.

September 2019 Was prescribed Ativan for withdrawal symptoms and tremor. Did not help.

September 2019 Was prescribed Gabapentin for withdrawal symptoms and tremor. Scared to take it due to side effects and worried it will make things worse.

November 2019 Diazepam 2mg Took 2 doses, did not seem to help and caused leg cramps. Stopped Diazepam.

November 2019 Flexeril 5mg, taking 1.25 mg very sparingly when needed for rigidity and muscle cramping 

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Shep
On 11/5/2019 at 1:41 PM, Altostrata said:

 

SOcean, did you have a chance to read over what Alto posted here? If not, please do so.

 

While we rarely recommend adding in another drug, since you're dealing with adverse reactions to your previous drugs and aren't able to reinstate even at the smallest amount, it may be something to consider. 

 

After you have a chance to read over these links, let's discuss using a very small amount of Lamictal (lamotrigine). 

 

@Altostrata Alto, please weigh in with any additional recommendations such as dose size. 


Drug free May 22, 2015 after 30 years of neuroleptics, benzos, z-drugs, so-called "anti"-depressants, and amphetamines 

 

My Success Story:  Shep's Success: "Leaving Plato's Cave"

 

And what is good, Phaedrus, and what is not good — need we ask anyone to tell us these things? ~ Zen and the Art of Motorcycle Maintenance


I am not a medical professional and this is not medical advice, but simply information based on my own experience, as well as other members who have survived these drugs.

 

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Altostrata

@SOcean can your doctor prescribe diazepam instead of Ativan?


This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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SOcean
6 hours ago, Shep said:

 

SOcean, did you have a chance to read over what Alto posted here? If not, please do so.

 

While we rarely recommend adding in another drug, since you're dealing with adverse reactions to your previous drugs and aren't able to reinstate even at the smallest amount, it may be something to consider. 

 

After you have a chance to read over these links, let's discuss using a very small amount of Lamictal (lamotrigine). 

 

@Altostrata Alto, please weigh in with any additional recommendations such as dose size. 

I did read the info. I hadn't heard of it before and my doctors so far have been so set in their ways about which drugs to use, it has been frustrating! I scheduled with a new psych for next week. I could ask him about it. Does anyone know how it effects muscles/tremors? 


2005-2015 Fluoxetine 20mg (tried to get off it twice during that time) Had bad depression once, so was raised to 40mg. 
2016-June 2019  Fluoxetine 40mg Noticed tics, twitches and spasms in muscles right away, especially in face and behind eyes. Doctors blew it off. Noticed tremors and muscle weakness in arms developing over time, especially after dose increased to 40mg. Noticed nerve pain, parathesia, and muscle pain/stiffness, coordination issues with my hands starting around 2016. Eye pain and vision issues.

June 2019 Was prescribed prednisone 20mg for 3 days, for vaccine reaction. Had horrible reaction to it. Maybe combined with fluoxetine? Reaction included serotonin syndrome like symptoms - hyperreflexia, rigidity, tremor, etc. Doctor had me take it for 3 days even with symptoms. Have been ill ever since with continuing neurological problems, dizziness, nausea, rigidity, tremor, blepharospasm, balance and eye issues movement and vision issues, akathisia, sound sensitivity.
July 2019-August 2019 Fluoxetine Seemed to be causing movement disorder and tremors. Tapered off Fluoxetine. Was cut to 20 mg over a week period, then 10 over a week, then 5 for a week, then 5 every other day for a week. Felt withdrawal at month 2.
2006-2019 Alprazalom Have used sparingly over the years. Not currently using.

September 2019 Was prescribed Ativan for withdrawal symptoms and tremor. Did not help.

September 2019 Was prescribed Gabapentin for withdrawal symptoms and tremor. Scared to take it due to side effects and worried it will make things worse.

November 2019 Diazepam 2mg Took 2 doses, did not seem to help and caused leg cramps. Stopped Diazepam.

November 2019 Flexeril 5mg, taking 1.25 mg very sparingly when needed for rigidity and muscle cramping 

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SOcean
8 minutes ago, Altostrata said:

@SOcean can your doctor prescribe diazepam instead of Ativan?

I doubt my PCP will. He is very anti-benzo but he said he'd prescribe Restoril. Any experience with that one? I scheduled with a new Psych next week. I could ask him about diazepam. 

 

I've also been prescribed Primidone for tremors by one of the neurologists. 🤦‍♀️I don't even know what to do with that one. I have all these meds that I've been prescribed and don't want to take. Currently taking nothing. Having a lot of trouble with my eyes and it is making me panic. I have a neuro optometrist appt tomorrow but they'll probably refer me to a neurologist, who will refer me to an eye doctor. No one helps! 


2005-2015 Fluoxetine 20mg (tried to get off it twice during that time) Had bad depression once, so was raised to 40mg. 
2016-June 2019  Fluoxetine 40mg Noticed tics, twitches and spasms in muscles right away, especially in face and behind eyes. Doctors blew it off. Noticed tremors and muscle weakness in arms developing over time, especially after dose increased to 40mg. Noticed nerve pain, parathesia, and muscle pain/stiffness, coordination issues with my hands starting around 2016. Eye pain and vision issues.

June 2019 Was prescribed prednisone 20mg for 3 days, for vaccine reaction. Had horrible reaction to it. Maybe combined with fluoxetine? Reaction included serotonin syndrome like symptoms - hyperreflexia, rigidity, tremor, etc. Doctor had me take it for 3 days even with symptoms. Have been ill ever since with continuing neurological problems, dizziness, nausea, rigidity, tremor, blepharospasm, balance and eye issues movement and vision issues, akathisia, sound sensitivity.
July 2019-August 2019 Fluoxetine Seemed to be causing movement disorder and tremors. Tapered off Fluoxetine. Was cut to 20 mg over a week period, then 10 over a week, then 5 for a week, then 5 every other day for a week. Felt withdrawal at month 2.
2006-2019 Alprazalom Have used sparingly over the years. Not currently using.

September 2019 Was prescribed Ativan for withdrawal symptoms and tremor. Did not help.

September 2019 Was prescribed Gabapentin for withdrawal symptoms and tremor. Scared to take it due to side effects and worried it will make things worse.

November 2019 Diazepam 2mg Took 2 doses, did not seem to help and caused leg cramps. Stopped Diazepam.

November 2019 Flexeril 5mg, taking 1.25 mg very sparingly when needed for rigidity and muscle cramping 

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Altostrata

I would go back to the most compatible neurologist you've seen, explain your hypersensitivity and history with benzos, and request diazepam. Specifically state that Ativan seemed to help as it was wearing off, but the initial dosage was too high and made you feel xxxxxxxx (please explain how it made you feel).

 

The neurologist will be familiar with lamotrigine. Relative to the drugs your PCP wants to try, at low doses, lamotrigine is a mild drug. If you want to try it, I would start at a quarter of a 2mg tablet (which is prescribed for children) or 0.25mg in compounded liquid. You could tell the neurologist that since you are so sensitive, you want to start at a low dose and titrate up. You'll have to keep daily notes to track the effect.

 

I would be hesitant to take a flyer on another drug. Restoril has roughly the same risks as a benzo. My guess is mIrtazapine would be too activating and a very bad drug for you -- but we can't know, any of these drugs is a trial-and-error experiment.

 

Please let us know how you're doing.

 

 


This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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