staystrong: My story

[staystrong]

In 2007 I experienced Neurological Malignant Syndrome after using a small amount of Geodon with Nardil my AD at the time.  I was unconscious when my 13 yr. old daughter found me at around 3:30 pm.

 

 I recall feeling tired that morning at about 10-10.30ish and lying down. Next I know I am bolting upright in ITC not having a clue what happened. For the next 5 days I slipped in and out of delirium. But luckily I got better after 3-4 weeks.

 

My p-doc on the psych ward, cause that's where they moved me, told me to stop the Geodon but never told me never to take an anti-psychotic again. He did not make it sound serious at all and I was so whacked out on Nardil I never gave it a second thought. In fact I had no idea neuroleptics and antipsychotics were the same thing and did not make the connection.

 

My own doctor never mentioned it either. He just told me to get off the Geodon in a very casual way. No red flags from anyone.

 

 Fast forward to 2015 when I was going through some serious trauma issues. I was forcibly admitted to another psych ward and some pathetic intern put me on 25mg Thorazine!!!  Like a good little patient who still trusted all doctors I actually took it.  After release, I added Vyvance which I had been on prior to the Thorazine with great results, at least so I thought.

 

I was OK from Sept. 2015 to Feb. 2016. I actually felt great! Then one morning after my am dose I literally heard a 'pop' in my head. I was alone so I stumbled around for a bit in total confusion and then slept like the dead for many hours. The following am when I tried to take my dose the anxiety was horrendous. CT'ed the Thorazine but the Vyvance was just as intolerable. Ct'ed from that. My dr put me back on Parnate a drug that once made me euphoric. I lasted 7 months with increasingly bad side effects. Dr had me ct that and then on to Lexapro 5mg. Lasted until Jan 1st 2017 and had to Ct that too. Dr kept pushing. From Jan 2017 to mid-June 2017 I was on Lithium/Lamictal/Concerta/Prozac and Lexapro (again) before I had to throw in the towel and stop.

 

Meanwhile he jacked up my Klonopin to 6mg!! (currently down to 4mg) and added 900mg Gabapentin, (down to 300mg.)

 

 At first I thought the GBN was helping but now not so much and I experience severe WD when tapering so staying with the 300mg for now. It also affects my language skills/cognition etc. This is a noted SDX of GBN.

 

Has anyone else found it brutal to withdraw, enen taper from GBN? I want so much off this drug which I have been on since Aug. 1st. Almost 4 months. Do you think  my brain damage is permanent? My CNS is so shocked right now and my SDX are: deep depression/anxiety, apathy/anhedonia and agoraphobia. Some days a little better but lately slipping backwards. Guess you would say I CT'ed from all AD's in mid-June so that makes4 months in AD WD.

 

Support and thoughts so welcome.................stay strong/be brave....................lilla

[ChessieCat]

Hi staystrong and welcome to SA,

 

The first thing we ask all members to do is to complete their drug signatue.  Please follow these instructions about how we prefer your signature to be.  Please include your tapering method and also update it whenever you make a change so it remains current.  Many members, including the moderators, experience brain fog and it helps to have the information is a way that we can easily see your history without having to read through it.  Thank you.

 

A request: Would you summarize your history in a signature - ALL drugs, doses, dates, and discontinuations & reinstatements, in the last 12-24 months particularly?

• Please leave out symptoms and diagnoses.
• A list is easier to understand than one or multiple paragraphs. 

• Any drugs prior to 24 months ago can just be listed with start and stop years.
• Please use actual dates or approximate dates (mid-June, Late October) rather than relative time frames (last week, 3 months ago)
• Spell out months, e.g. "October" or "Oct."; 9/1/2016 can be interpreted as Jan. 9, 2016 or Sept. 1, 2016.
• Link to Account Settings – Create or Edit a signature.

 

SA recommends tapering by no more than 10% of the previous dose followed by a hold of about 4 weeks to allow the brain to adapt to not getting as much of the drug.  Please have a read of the following links:

 

Why taper by 10% of my dosage?

Dr Joseph Glenmullen's WD Symptoms Checklist

 

Tips for tapering off Neurontin (gabapentin)

 

Reinstatement may be an option.  The idea of reinstating is to bring withdrawal symptoms to a bearable level, not to get rid of them completely.  When somebody decides to reinstate, we suggest a low dose to try and ask that the member keeps daily notes on paper of what symptoms improve/worsen so that we can see if reinstatement is working.  It is best to start with a low dose and increase by a small amount if needed.  If you decide that you would like to reinstate, please let us know and we can suggest a dose for you to try.  Please read Post #1 of this topic so that you understand what is involved:

 

About reinstating and stabilizing to reduce withdrawal symptoms

 

This is your own topic where you can ask questions and journal your progress.  If you click on the drug tag under the topic title (top left) it will bring up other members who have the same tag.

[staystrong]

Hello comrades,

In mid-June of 2017 was forced to ct all AD's as I was in a mess mentally ever since a reckless intern in a psych ward put me on 25mg of Thorazine to which I sustained some kind of brain damage.  in 2007 I underwent neurological malignant syndrome due to a small dose of Geodon taken with 60mg. Nardil. (see my intro for more details)  Anyway after the AD ct my reckless Dr. put me on 900mg. gabapentin but quickly dropped to 300mg. Now almost 4 months out I realize the GBN is making me more depressed. flat, anxious and stupid along with unrelenting blocked bowels.

 

I made a drastic cut to 160mg and was suicidal, raging and my brain felt like sludge.

 

Going to try a very slow taper once I get a script for liquid GBN.

 

Anyway wondering if anyone else finds GBN makes them depressed and flat. Plus the extreme cog fog and constipation. Are there others who cannot safely taper at 10% or higher.

 

Please I am so messed up right now I am basically bedbound.

 

I currently take 300mg. GBN in the am.

 

Would love some feedback..................peace to all................ss

[chrona]

depression goes with the territory of a gb taper, for me esp.  on waking.   homeopathic Aurum Met  helps to some extent.  

[staystrong]

hello everyone,  feeling so darkly depressed, anxious and afraid on 300mg. gabapentin. Tapered too fast and felt suicidal. Reinstated at 300mg. taken once in am.

Not stable at all but need to get off this poison. My CNS is shot. I am still on a benzo. Should this help with GBN withdrawal?? So terrorized can barely function. What do you suggest as feeling worse daily.  A cry for help.....................be well my comrades in pain

[ChessieCat]

Staystrong, please take some time and complete your drug signature as previously requested.  This will show up below every post you make and will give other members the context of your situation.

[staystrong]

ChessieCat I posted my signature earlier today. But thanks for reminding me!...staystron

[staystrong]

I was taking Vyvanse and feeling well as no other drug worked. then some doctor added Thorazine and  within a few weeks i felt a 'pop' in my brain and after that i could not tolerate any anti-d's or the vyvance. instead i went into c/t withdrawal. then my dr. gave me gabapentin which totally screwed me up. i  c/tied that on oct.24th and have been in hell since.I feel like my dopamine synapes have died. is this possible?  will i ever heal? i really cannot take this much longer. please respond.........

[RealMe]

On 12/20/2017 at 6:02 PM, staystrong said:

I was taking Vyvanse and feeling well as no other drug worked. then some doctor added Thorazine and  within a few weeks i felt a 'pop' in my brain and after that i could not tolerate any anti-d's or the vyvance. instead i went into c/t withdrawal. then my dr. gave me gabapentin which totally screwed me up. i  c/tied that on oct.24th and have been in hell since.I feel like my dopamine synapes have died. is this possible?  will i ever heal? i really cannot take this much longer. please respond.........

Hi staystrong,

How are you feeling?

[staystrong]

like i am dying. i am bedbound for most of the day. the anxiety never leaves and i have recurrent thoughts  of what a loser i am and how i am ruining my family's life. i used to be the leader, the planner always on the go, always fun and joking. i made almost all the decisions because my husband has aspergers and needs me to lead in all things. i was the organizer and cleaner galore, now i just watch the house get dirtier and dirtier. my brain fog is bad, i have 2 university degrees but now i seem so stupid and i can't remember anything whereas i once had a perfect memory.  this is so cruel when you trust your doctors and then when it is too late they don't believe you.

 

sorry for the rant but i really don't think i'll ever be happy again.  also i get so many infections like uti, ear and a constant cough. i sweat all the time and it smells rancid. it's so painful the whole thing.

[staystrong]

dear realme, how are you doing?  are you suffering some of my own symptoms? what do you do during the day?? i need an online friend right now who is going thru the hell i am. let me know a little about yourself. sending healing thoughts your way, you sound like a caring person. please respond.......

[RealMe]

Hi Staystrong,

Thank you for responding to me.  I am having a very difficult time with tinnitus, dystonia, tremors, fatigue, anxiety, wishing for the end but praying for strength.  I ask God to either cure me or give me the strength to cope with these symptoms.  I spend a lot of time on this site reading the experiences and suggestions of others, especially the success stories.  Like you, I write to people and ask for ideas on how to manage.

 

I'm 72 years old, and I'm trying to taper off 9 mg. of Fluoxetine.  I guess you could say I was a child alcoholic.  Our family was floating in alcohol, and I picked it up at a ridiculously young age.  So did my brother, but not my two sisters who are doing very well.  My brother died of cirrhosis two and a half years ago.  

 

I entered psychiatry land when I was 19 and was prescribed valium for panic attacks.  From that point on, my life became a real mess with both alcohol and valium until I finally stopped both in 1976.  I lasted drug free until 1982 when I landed in my second psychiatrist's office, crying about my awful life and intolerable feelings (there were indeed some terrible things going on, but I could possibly have gotten through them, I think, with the right therapy.)  I agreed to go into the hospital and took whatever he gave me.  The only thing I know for sure that I was on in the hospital was Ativan and Imipramine.  I woke up nuts and suicidal and stayed that way for quite some time.  There were other drugs too, such as Desyrel (sp?), but I can't remember what else.

I finally managed to get off Imipramine myself around 1985 and stayed off until 1995 when one of my children got into terrible trouble.  I had uncontrollable diarrhea, panic, crying, seeming inability to take care of my children or myself.  My husband and I went to therapy, and the focus shifted to me and my past history and current depression.  This time I went to a GP and was given Prozac.  I took that from 1995 until November, 2012, when my alcoholic brother died a terrible death from cirrhosis.  I was up to 80 mg. of prozac, and I retired from my teaching job because of what was probably grief, but my GP sent me to my third and final psychiatrist.

 

After several different SSRI's did not show improvement, the psychiatrist prescribed Trintellix and Abilify which I took for two and a half years until uncontrollable hand tremors and cervical dystonia appeared.  He said he didn't think the meds caused it, but nevertheless told me to stop Abilify.  He said I would not have any trouble since I was on such a low dose.  There are no words to  describe the Hell I went through, but fortunately on this SA site, I do not have to explain because many others have been through even worse.  I complained to the psychiatrist, and he gave me more and more drugs which I also cold-turkeyed.  I am now stabilizing on a small dose of prozac and plan to taper it come what may.  I am encouraged by the people on this site that it might indeed be possible at slow 10% reductions.

 

I fight obsessive thoughts of how stupid I was to think brain-altering chemicals could help me; also, that I was foolish to listen to people who told me, "you need serious medical help."  I probably needed to shut up, but I sure didn't need the kind of medical help I received.  Even when the gp was increasing my prozac year after year up to the maximum, no one suggested that I might do better to get off the drug safely.  Well, enough of riling myself up with feeling like a victim.

 

I try to get together with my children and grandchildren.  For me, it helps to just say I'm ok and keep a wrap on my despondency.  My husband would like me to keep it from him because he feels helpless, but he is very supportive.  I can see it is wearing on him, and that kind of helps me to keep a chin up once in a while.

 

Well, staystrong, I guess this is more blah, blah, blah than you bargained for; but it has been good for me to speak my truth freely to you.  I do hope you and I will recover and heal together and that you will share your story with me if you wish to.

 

Best wishes,

RealMe

 

 

 

 

[RealMe]

On 12/31/2017 at 3:45 PM, staystrong said:

like i am dying. i am bedbound for most of the day. the anxiety never leaves and i have recurrent thoughts  of what a loser i am and how i am ruining my family's life. i used to be the leader, the planner always on the go, always fun and joking. i made almost all the decisions because my husband has aspergers and needs me to lead in all things. i was the organizer and cleaner galore, now i just watch the house get dirtier and dirtier. my brain fog is bad, i have 2 university degrees but now i seem so stupid and i can't remember anything whereas i once had a perfect memory.  this is so cruel when you trust your doctors and then when it is too late they don't believe you.

 

sorry for the rant but i really don't think i'll ever be happy again.  also i get so many infections like uti, ear and a constant cough. i sweat all the time and it smells rancid. it's so painful the whole thing.

I hope you are feeling a little better.  I am so sorry about what you are going through.

[Altostrata]

Hello, staystrong, what is your current symptom pattern? Do you feel better or worse at any particular time of day? How are you sleeping?

[Barbarannamated]

On 12/31/2017 at 3:45 PM, staystrong said:

like i am dying. i am bedbound for most of the day. the anxiety never leaves and i have recurrent thoughts  of what a loser i am and how i am ruining my family's life. i used to be the leader, the planner always on the go, always fun and joking. i made almost all the decisions because my husband has aspergers and needs me to lead in all things. i was the organizer and cleaner galore, now i just watch the house get dirtier and dirtier. my brain fog is bad, i have 2 university degrees but now i seem so stupid and i can't remember anything whereas i once had a perfect memory.  this is so cruel when you trust your doctors and then when it is too late they don't believe you.

 

sorry for the rant but i really don't think i'll ever be happy again.  also i get so many infections like uti, ear and a constant cough. i sweat all the time and it smells rancid. it's so painful the whole thing.

 

Living with someone with Asperger's is extremely challenging even when healthy.  I never realized how much it was effecting me until I joined a group of women married to Aspies and our experiences are remarkably similar, with lack of connection or support being a constant battle.  

 

I'm so sorry you're dealing with all of this.  Try to reach out for any support or connection available.  Xo