thelegend: hoping to get there

[sunnysideup69]

Hey @thelegend how are you doing?

[thelegend]

Hey @sunnysideup69 here is where I am at:

 

Still really struggling with daily extreme anxiety, many other symptoms have improved or cleared up, but man the anxiety is so bad and crippling at times. Not sure it will ever get better, seems like I have been hoping for this to improve now for nearly 3 years with little to no change. I don’t feel the need to come here as much constantly seeking reassurance, maybe it is progress and I am doing better than I am giving myself credit for. Would love to be a voice and really help others who are struggling here, but I don’t think I am well enough for that yet. Maybe one day I will be a success story...still seems so far off.

 

September Update:

 

Extreme Anxiety - probably as bad as ever, certainly not as good as March and April when I was noticing real improvement.

Warm Sensation in leg - New and now almost gone, not sure what it was, but I hardly feel it anymore.

Sensitive to sound - gone

Sensitive to touch - gone

Pins and needles - gone

Burning eyes, arms, back, feet - Eyes have improved the last month or so, I can also feel chest and arms at times, but not to the degree they once were

Hyper stimulation - still around, like I am always keyed up

Bad sleep - much worse than the Spring, probably not as bad as the beginning.

Waking with cortisal spikes - again, has come back significantly, not as bad as the beginning.

Light headedness, or feeling like you are not quite all there - Better in August than in June and July

IBS - still up and down here, overall improvement though

Shaking - better than it used to be, almost gone

Sweating - better than it used to be, almost gone

 

Overall it’s looks like there is improvement, but my worst symptom (the anxiety) is still around and at times it is as bad as it ever has been. Why is it not getting better after all this time, now 16 months into a hold.

[ChessieCat]

 

On 1/10/2020 at 12:00 PM, thelegend said:

I don’t drink alcohol, never have

 

Please note that these questions are investigative, trying to work out if there is something else in the mix.  Because we are making suggestions based on the information that you provide we need to ensure that we have all the information about things which you might be taking or have taken.

 

Q:  Are you consuming any drinks containing caffeine, eg energy drinks, cola drinks, strong or many cups of coffee?

 

Q:  Are you or have you previously taken any supplements or illicit drugs?

[thelegend]

23 hours ago, ChessieCat said:

 

Q:  Are you consuming any drinks containing caffeine, eg energy drinks, cola drinks, strong or many cups of coffee?

 

 

I do consume cola and sometimes energy drinks.

 

Quote

 

Q:  Are you or have you previously taken any supplements or illicit drugs?

 

Only supplements are Fish Oil

 

Edited September 3, 2020 by ChessieCat
extracted answers

[ChessieCat]

2 hours ago, thelegend said:

 

I do consume cola and sometimes energy drinks.

 

 

On 9/2/2020 at 4:33 AM, thelegend said:

 

my worst symptom (the anxiety) is still around and at times it is as bad as it ever has been. Why is it not getting better after all this time, now 16 months into a hold.

 

 

Caffeine is a stimulant.  It may be contributing to your anxiety.  It may be worth eliminating the cola and energy drinks.  It may not get rid of the anxiety but it might make a bit of a difference.   If you decide to do this it is better to reduce it otherwise you can get withdrawal symptoms.

 

Also, remember to only make one change at a time.

[thelegend]

19 hours ago, ChessieCat said:

 

 

Caffeine is a stimulant.  It may be contributing to your anxiety.  It may be worth eliminating the cola and energy drinks.  It may not get rid of the anxiety but it might make a bit of a difference.   If you decide to do this it is better to reduce it otherwise you can get withdrawal symptoms.

 

Also, remember to only make one change at a time.

thanks @ChessieCat, I will for sure look into reducing or eliminating caffeine. On an unrelated note, had anyone looked into the Amen Clinics? See like they do brain scans to find what isn’t working right, and come up with a holistic approach to fixing the brain issues (they don’t like the term “mental illness”). Reading the book “the end of mental illness” and it sounds like what they do is pretty fascinating and kind of goes along with what we learn from SA. Just wanted to see if anyone had any experience with this.

[bijay]

@thelegend How are things going?  Ever check out an Amen clinic or any other new approach?

[sunnysideup69]

Hey @thelegend, how are you? Hoping your absence means a window Xx

[thelegend]

Hey @sunnysideup69and @bijay here is an  update:

 

Still really struggling with daily anxiety. It is worse in the mornings and usually by evenings I feel pretty normal. Also is better on weekends. It is not normal anxiety, it is the chemical, waking like a punch to the stomach I have become so accustomed to over the last 4 years since I so stupidly quit my Medication I had been taking for 8 years from to 0, I didn’t feel like I needed it anymore. Boy did I know nothing about these drugs to have been so foolish. 4 YEARS of absolute hell with no end in sight. I feel like I have missed so much of life with my young family that I will never be able to get back, and honestly holding at my current meds for the last 18 months was kind of my last ditch effort to hope for a feature to some semblance of a normal life. After 18 months of this I have little hope of it ever getting better at this point and am not sure how to keep going on living the way I am. I thought it was getting better in the Spring, that came crashing down. I thought that again in the late Summer, early Fall. Again it seems it has all come crashing down again. Maybe a mod like @brassmonkeyor @Gridleycould help me with feeling like I still have hope and a path forward at this point.

 

November Update:

 

Extreme Anxiety - probably as bad as ever, certainly not as good as March and April when I was noticing real improvement.

Warm Sensation in leg - gone

Sensitive to sound - gone

Sensitive to touch - gone

Pins and needles - gone

Burning eyes, arms, back, feet - Eyes have improved the last month or so, I can also feel chest and arms at times, but not to the degree they once were

Hyper stimulation - still around, like I am always keyed up

Bad sleep - much worse than the Spring, probably not as bad as the beginning.

Waking with cortisal spikes - again, has come back significantly, not as bad as the beginning.

Light headedness, or feeling like you are not quite all there - Getting better

IBS - still up and down here, overall improvement though

Shaking - better than it used to be, almost gone

Sweating - better than it used to be, almost gone

[Gridley]

9 minutes ago, thelegend said:

I still have hope and a path forward at this point.

When you're at a low point, as you are now, and especially when it lasts a long time, it seems hopeless.  But looking over your update, the majority of your symptoms have improved, some vastly so.  I know the anxiety and insomnia can wear you down but overall it seems to me you're improving.  You're stabilizing.  It can take a while.  

 

 

[bijay]

@thelegend  I do know that feeling of raw anxiety.  It sucks.  I would feel like my body and mind were being chemically hijacked 24/7.

The fact you are much better in the evenings and on weekends - could your job be a factor?

[thelegend]

Have you gotten over your anxiety? Are you doing better? Yes I think for sure my job factors in, but I don’t know how to fix that.

[bijay]

@thelegend  Yes my anxiety is much better, although I have gut and other physical symptoms that are pulling me down right now.  Pretty sure these are the direct result of the amitriptyline I am tapering, and they are the main source of my anxiety.  To cope I use meditation, CBT therapy, and TRE (Tension/Trauma Release Exercises).

 

But if there is any chance your job is contributing to your anxiety, you owe it to yourself to do something about it.  It is just too important not to. Maybe as a first step you can talk with one or more people (coworker, therapist, pastor, good friend) to get another perspective on your options.  There are ALWAYS options, but you will have to look for them.

[Lynnardgirl]

thelegend 

I have heard that those Energy drinks are really bad for you try not to take them for a whole week and see if that helps Ok prayers still CoMimg your way 

[thelegend]

On 11/5/2020 at 11:28 AM, Lynnardgirl said:

thelegend 

I have heard that those Energy drinks are really bad for you try not to take them for a whole week and see if that helps Ok prayers still CoMimg your way 

thanks I will need the prayers it seems. How are you doing? Seeing any improvements?

[Lynnardgirl]

29 minutes ago, thelegend said:

thanks I will need the prayers it seems. How are you doing? Seeing any improvements?

I feel really good than bam back to this horrible horrible anxiety ! Like you , I don’t know what to do anymore . It’s so hard trying to stay positive  it’s been going on for years ! God bless you my friend everyday I say a pray for you 

[thelegend]

On 11/6/2020 at 4:20 PM, Lynnardgirl said:

I feel really good than bam back to this horrible horrible anxiety ! Like you , I don’t know what to do anymore . It’s so hard trying to stay positive  it’s been going on for years ! God bless you my friend everyday I say a pray for you 

I haven’t checked in on you for a bit, how are you doing?

[Lynnardgirl]

7 hours ago, thelegend said:

I haven’t checked in on you for a bit, how are you doing?

Hi haven’t been on for a while ! Just trying to go through a detox, Dr. Bill Cole 

Did a test to see how damaged my cells are and wow off the chart! It’s a 5 month program ! I will keep you posted. 
please tell me you are seeing good changes 

prayed for you again today my friend 

[thelegend]

Hi all! I want to get back to my monthly updates, so here it goes:
 

I don’t feel the need to come here as much constantly seeking reassurance, so I guess that must point to doing better. My daily anxiety still is very hard to deal with. It is chemical, but it seems to be exacerbated by work, as nights, weekends, and holidays are better. I am almost 2 years now into a hold, and still don’t feel close to stable, will I ever be able to start to taper? Does it every take others this long to stabilize?

 

February Update:

 

Extreme Anxiety - Better now than it has been in the past, some improvement here, though nowhere near what I would have hoped.

Warm Sensation in leg - weird symptom last Spring, now gone.

Sensitive to sound - gone

Sensitive to touch - gone

Pins and needles - gone

Burning eyes, arms, back, feet - Almost Gone, I feel it in my eyes sometimes, and very rarely in my arms.

Hyper stimulation - still around, like I am always keyed up

Bad sleep - Not bad, I sleep much better than I used to. 

Waking with cortisal spikes - for sure still around, though it may be getting better

Light headedness, or feeling like you are not quite all there - not a major issue anymore, still hangs around though.

IBS - still up and down here, overall improvement though

Shaking - pretty much gone

Sweating - pretty much gone

 

Overall it’s looks like there is improvement, but my worst symptom (the anxiety) is still around and feels suffocating at times. 21 months into a hold, who knew I had messed everything up to this degree! Are there success stories for people that have had to hold this long?

[RachelSusan]

The Legend,

I came by the cheer you on.  I know the anxiety must be crushing but you are going in the right direction. You probably hoped the anxiety would be the first to go but it appears other things are clearing up first.

 

I know you will find improvement.

 

Warm wishes.

[Dejavu]

Hi @thelegend. I haven't been on in a while (working through a wave of my own) but like RachelSusan, I wanted to cheer you on as well. Through no fault of your own, your CNS was put through sooo many changes - CT zoloft, high reinstatement dose, then on and off prozac and lexapro, and back to zoloft with zyprexa added. It's no wonder it's taking a while for you to reach stability, but you will. You're already seeing solid improvement. I know it's hard to be patient, and in fact, I wish I could take my own advice. When I fast-tapered, crashed, and reinstated too much, it took me 10 months to stabilize, and I didn't have nearly as many changes as you. But I did end up stable, as will you.

 

Unfortunately, I have knocked myself off the wall again with a series of tapering mistakes. I'm trying to stabilize again now for the past 7 months, so I feel your pain with the anxiety. I know you're tired; I'm tired too. But we're both going to get there. Stability may be right around the corner for you. I'm rooting for you!

[Estman]

On 8/27/2019 at 9:58 PM, Rhiannon said:

Pretty typical for mornings to be hard and evenings to get some relief. The fact that you're getting relief in the evenings is actually another good sign. Hang in there, you're on the way.

 

Also it seems to be very normal for people to quit an AD, get through the acute WD after a few weeks, think they're fine, then somewhere in the 2-3 months range to get hit with WD again, slightly different symptoms (less of the electrical shock stuff, but more emotional anguish, akathisia, anxiety, insomnia etc, intense and intolerable.) At this point most doctors call it "return of the underlying condition" and people go back on the AD, like you did last spring. Back when I was first on an AD, the first time I quit, this is exactly how my pattern went, and same thing a few years later when I tried again to quit. It's so typical and normal that I am certain there is a physiological, neurochemical process underlying it. Maybe someday scientists will even do the research and find out why. Not holding my breath for that now, though. 

Yes, the waves start completely unexpectedly
I have usually reduced once a month and no more than 7% of the daily dose
One would think that each time has the same pattern, but it is not
Now that I have reached a lower dose, each period is very difficult.
now, a month after another reduction in another heavy wave, it started again completely unexpectedly.
And my doctor, a deserving psychiatrist, claims that this drug does not cause withdrawal symptoms at all, what a mistake!
clomipramine appears to have a short half-life and is one of the more difficult substances to withdraw
The only support for this forum is these people too!

[thelegend]

Well just thought I would check in. I do feel I am improving. I just did 10 days in Disney World with my family and it was AWESOME. Didn’t even think about WD, pretty much zero symptoms. Now I am back hime and found myself thrust into a deep wave, not sure why but this is typical for me for whatever reason. Vacations are like breaths of fresh air and glimpses of normalcy, only to come crashing down. It is like when I get home, someone flips a pain switch in my brain, anyone else have that? 
 

Hopefully it won’t last too long and I can get back to slow improvements, but it is really bad the last few days, making me doubt everything!

[mstimc]

Could be the usual post-vacation blues exacerbated by WD.  Focus on the great time you had--use those memories to reset your thinking. You'll be headed for a window soon!

[thelegend]

Thanks @mstimc I am hoping to get back to my WD normal, which is really hard but much more manageable. Not sure why a vacation gives me complete clear windows with pretty much zero symptoms, only to always come back to “real life.” 

[Fallensoul]

@thelegend, I'm no doctor, but it could be the Zoloft that keep you in that anxious state.

 

When my paxil pooped out, I had extreme anxiety and allmost lost my mind, when stil taking the drug.

I still tapered down to 10, and it went a little better

After this I tried to cross over to Clomipramine, but that never worked. I become worse again.

So I tapered that back from 50 to 23,5 mg now. Paxil is on 5,5.

Maybe you have to micro taper this drug, despite beiing not completely stablelised, but that's just my thoughts and I'm are far less experieced as alto, chessie etc.

 

Take care!

 

 

[sunnysideup69]

Hey @thelegend, long time no speak! Came by to wish you well and see how you're doing.

 

I also had post vaccination blues. Hope you're feeling better xxx