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thelegend: hoping to get there

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thelegend

Anyone with some insight into this?


“I do have a weird new symptom, like a warm feeling that runs down my upper leg on my right side. Happens a few times a day, feels like I peed my pants, really odd. Not sure if anyone else has had this, if this is WD related or something else.”

 

@Gridley or @brassmonkey ever heard of this? Do you think it is WD related or something else?

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brassmonkey

These drugs target the nervous system and cause all sorts of sensations. Hot and cold flashes, things crawling on your body, itching, phantom smells and sensations, flashes of light, I suspect this is just your nerves making some adjustments. Sounds rather uncomfortable though. With luck it should clear up in a few days.

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Tom37

Try not to stress about it as just makes things harder.....I’ve had so many weird sensations I’ve lost count. It’s just some part of the nervous system not too happy which creates the symptom but it will go.

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sunnysideup69

@thelegend

The backward steps are all part of the process. I've been stabilizing for eleven months now. Sometimes this game goes on longer than we could ever anticipate.

 

I thought I was done with windows/waves at the beginning of Feb and then had a few wonky months. Been steadily improving since May but still get waves, in a slight one now since the weekend.

 

We will stabilise.

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thelegend
7 hours ago, sunnysideup69 said:

@thelegend

The backward steps are all part of the process. I've been stabilizing for eleven months now. Sometimes this game goes on longer than we could ever anticipate.

 

I thought I was done with windows/waves at the beginning of Feb and then had a few wonky months. Been steadily improving since May but still get waves, in a slight one now since the weekend.

 

We will stabilise.


I really hope so, been trying to stabilize for 13 months now. I too thought the worst was behind me in March and April. Not the case it seems. All symptoms are back today and anxiety is CRUSHING! Really discouraged that I had a worse 4th of July this year than last year when I just started holding.

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Dejavu

@thelegend, something similar happened to me right before I stabilized. Every time I went barefoot, I felt like I was stepping in water. It was the strangest thing. Like the rest of the symptoms, it went away.

 

You will stabilize, my friend. It took me around a year too, but it happened. It will for you as well.

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thelegend

Just got back from a 10 day vacation, total window the whole time, barely even thought about anxiety or withdrawal. Hoping it would be a sign of lasting stability, 1st day back to work and anxiety is back again. Any ideas why this would be the case? Had anyone else experienced something similar where it was pretty much totally gone on a vacation, and then back to the same old crap when you get home? Today is a real struggle, which is SO frustrating as anxiety and withdrawal were totally gone for 10 days.

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mstimc
47 minutes ago, thelegend said:

Any ideas why this would be the case?

Hi Legend

 

My guess is that while you were on vacation, your distracted mind was too busy processing your new surroundings and experiences to let your anxious feelings take over.  Once you got back into a familiar environment,  the distractions disappeared and the anxiety re-emerged.  The good news is that your vacation shows anxiety is only as powerful as the attention you give it.  If you can find some other alternative means of distraction at home, it may help.

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Tom37

Sorry to hear about that. I can’t offer any advice as to why that would happen other than maybe less stress involved. For me waves hit whenever they want even on holiday so I can’t relate to it. Good sign though that the anxiety can ease up. It’s shown it’s weakness so in time you should see less anxiety during daily life.

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thelegend
17 hours ago, Tom37 said:

 It’s shown it’s weakness so in time you should see less anxiety during daily life.


I would take this as a very encouraging sign, but I had a similar experience last year on vacation (though the symptoms did not abate to the degree I experienced this time) yet here I am a year later and still struggling. Today has been so bad, I can’t believe it can change so quick, I am not exaggerating when I say I had pretty much no anxiety or WD symptoms while on vacation, now it is as bad as ever!

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Tom37

It’s interesting how it happens like that for you. Do you find weekends any better? Just keep hanging in there. I know it’s hard as not doing too great myself at the moment after feeling significantly better so feeling pretty low about ever getting out of this.

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bijay

@thelegend. It is incredibly frustrating to fall so fast after feeling so good.  The rollercoaster ride of healing is stressful in itself, beyond just dealing with the WD symptoms.

 

Since you’ve had unusually good experiences while on vacation, have you used other self-care methods that could help extend these windows?  I went through part of the thread here but didn’t see if you had tried thing's like CBT, meditation, exercise, etc.  Apologies if I’m going over old territory.  But even if these approaches are not quite the same as a week of vacation, they may at least help smooth out the bumpy ride when dealing with the normal stresses of life.

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thelegend
14 hours ago, Tom37 said:

It’s interesting how it happens like that for you. Do you find weekends any better? Just keep hanging in there. I know it’s hard as not doing too great myself at the moment after feeling significantly better so feeling pretty low about ever getting out of this.


yes, weekends are typical much more manageable. It really is weird! It is amazing how things can flip so quickly to where you feel like you are back where you started.

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thelegend
9 hours ago, bijay said:

@thelegend. It is incredibly frustrating to fall so fast after feeling so good.  The rollercoaster ride of healing is stressful in itself, beyond just dealing with the WD symptoms.

 

Since you’ve had unusually good experiences while on vacation, have you used other self-care methods that could help extend these windows?  I went through part of the thread here but didn’t see if you had tried thing's like CBT, meditation, exercise, etc.  Apologies if I’m going over old territory.  But even if these approaches are not quite the same as a week of vacation, they may at least help smooth out the bumpy ride when dealing with the normal stresses of life.


great advice, I have tried some CBT, didn’t seem to help much, though admittedly I may not be very good at it. I need to be better at self-care though for sure, it could make a big difference I am sure.

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bijay

Please don’t feel that it’s necessary to be good at any of this for it to help.  It’s more important to let go of expectations and just keep at it, whatever it is.
 

I do use the Calm app for meditation, and it has a lot of resources for addressing issues with anxiety and sleep.  Or maybe looking for things outside your normal environment would help - volunteering at a food bank, even riding your bike around a new neighborhood could spark that sense of being away on a mini-vacation.

 

The brain is a powerful thing - just think about how you were transformed during your vacation.  Meditation, exercise, and other approaches change brain chemistry too - we are not just at the mercy of the drugs we take.  

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thelegend

@bijay - thanks for the advice and kind words. I need to try some of this stuff, anxiety is off the charts today, so crazy how the flip can switch and put you back in complete hell!

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thelegend

Safe to say I am firmly in a terrible wave right now after a great window last week. Why am I still getting slammed so hard this far out? I mean a year and two months of holding and still doing terrible? Am I doing something wrong? Why am I not stabilizing? Seems like most people stabilize a few months after reinstatement. Am I stuck like this forever? Sorry just really down today, could use some advice and encouragement!

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thelegend

Today is exactly 15 months into reinstatement.

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mstimc

Hi Legend

Unfortunately,  waves are part of the unpredictable recovery process.   You had a window last week, so that should tell you that this wave isn't permanent or undefeatable.  Try to accept that waves will come but they won't last.  The farther you move toward recovery, the less powerful the waves will be.  Don't be too hard on yourself by expecting too much while you are in recovery.  It does take time and you'll run into these roadblocks, but you will recover!

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Dejavu

Matt, I want to remind you that you have had windows, which indicates that you will stabilize. I'm sure it's coming soon. It took me about a year to reach stability; you're not too far outside that. And I was very worried because I had no real "windows," per se. Just a very gradual, up-and-down type of improvement, until I realized I wasn't having symptoms any longer. We all stabilize, but we are all different in how our brains get us there. Try to think ahead to how wonderful it will be when you reach a stable state. 

 

Keep the faith, my friend. Soon it will be your turn!

 

Its 4:30p Texas time. I won't be back on until tonight, but you can reach out to me anytime.

 

Pam

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Lynnardgirl

@thelegend 

Yes you had a wonderful window your healing !

I am 19 months from last taper and still having

waves! I know healing is taking place because of some beautiful windows! Especially last week! Stay strong and you have to believe healing is happening everyday ! 
God bless you my friend 

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sunnysideup69

Hello @thelegend,

Want to reiterate what the others have said. You're having windows and that is a sign that you are recovering. You have to hang onto that fact. It's great that you felt so good whilst away.

 

Unfortunately, these waves are all part of recovery - remember, they are a natural part of the healing process. Eventually they will be barely noticeable. Do try not to count the months, unless you can give it some spin eg You're 15 months closer to recovery. I know it's difficult not to count the passage of time, still catch myself doing it. I'm not far behind you, buddy, nearly a year for me and I have absolute faith that I will stabilise to the point of feeling pretty normal most of the time. So will you.

 

Sometimes even a pleasant change of scenery can trigger a wave. Or sometimes, even though you've had a nice event where you've felt good, it can still be taxing on a fragile nervous system and you wobble for a while afterwards. Hang on in there. Recovery is S  L  O  W. 

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thelegend

Man struggling so bad, this wave may be the worst in yet. Thank you all for your kind words and encouragement, all that is getting me through at the moment. Last week seems like a lifetime ago where I was in an amazing window, it all just seems impossible now!

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Dejavu

I'm so sorry Matt. I can relate. Yesterday was awful for me too. Pretty much dizziness, crying, depression and anxiety all day. Today is not fantastic, but much better nevertheless. Maybe your tomorrow will be as well.

 

Just want to remind you it took me a very long time to stabilize as well, but when I did, I felt 95-99% normal, maybe even 100% (it's a shame I knocked myself off the wall again). I've learned to trust the mods on this site implicitly, and they say that stability eventually happens. You've put a lot of time into this stabilization, and it will pay off. Keep your chin up. There are good things in store for you.

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thelegend

Pam,

 

I am so sorry you are going through the wave you are, but it actually is helpful to know I am not alone. We can get through this together! Like you, I find myself really wanting to start my @brassmonkey slide to get off this garbage, but know I am simply not there yet as this wave is proving!

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thelegend

Well July I had my best window yet (on my vacation) and some of my worst days as well. Doesn’t sound much like stabilizing even though I am now 15 months into a hold. Here is my update.

 

August Update:

 

Extreme Anxiety - probably as bad as ever other than the 10 day window. Gone during the window

Warm Sensation in leg - New and really annoying, probably less severe than last month.

Sensitive to sound - gone

Sensitive to touch - gone

Pins and needles - gone

Burning eyes, arms, back, feet - sometimes eyes, 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 - This has been quite prevalent during this wave, probably as bad as ever

IBS - a little better than last month

Shaking - better than it used to be

Sweating - better than it used to be

 

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?

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bijay

Hi @thelegend sorry to hear that you continue to have anxiety after your window of a vacation, but it's good you can see there is overall improvement.  During the window, did the other symptoms improve as well?

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mstimc
1 hour ago, thelegend said:

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?

 

Hi Legend

 

I think anxiety is among the last things to improve because its a learned behavior, and it comes from the most basic part of our brains, the part that is most difficult to "reprogram" during recovery.  I still have anxious thoughts and it can be difficult the manage them, especially in recovery, but you are making great progress!

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thelegend
7 minutes ago, bijay said:

Hi @thelegend sorry to hear that you continue to have anxiety after your window of a vacation, but it's good you can see there is overall improvement.  During the window, did the other symptoms improve as well?


All symptoms were pretty much gone. I had that warm sensation in my leg a few times in those 10 days, but that was it!

3 minutes ago, mstimc said:

 

Hi Legend

 

I think anxiety is among the last things to improve because its a learned behavior, and it comes from the most basic part of our brains, the part that is most difficult to "reprogram" during recovery.  I still have anxious thoughts and it can be difficult the manage them, especially in recovery, but you are making great progress!


thanks, I just hope I start seeing some meaningful improvement in the anxiety soon!

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bijay
19 minutes ago, thelegend said:


All symptoms were pretty much gone. I had that warm sensation in my leg a few times in those 10 days, but that was it!


thanks, I just hope I start seeing some meaningful improvement in the anxiety soon!

 

Wow, that's amazing that all but one symptom disappeared.  It does seem like there is a switch somewhere in the body that controls these things ....

 

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thelegend

Why does it feel like everyone is stabilizing except for me? @brassmonkey and @Gridley, what am I doing wrong?

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Dejavu

You're not doing anything wrong. Let's look at this pragmatically. All those changes in 2019. All those changes! Your poor CNS had no idea what hit it. It took me a year to stabilize - with ONE drug, and ONE fast taper. Your brain is continuing to sort all this out. Stability is coming. That's a given. The best thing to do at this point is provide it the stability it requires to finish the job.

 

Also, I think the fact that you enjoy nice windows when you're away from home speaks volumes. I'm just the opposite. My home life makes me feel safe and secure. Maybe start thinking about what you love about getting away. Is there anything about your day to day existence that stresses you? Anything you might need to change?

 

In my case, I had a very demanding, unreasonable and narcissistic client who was making my job miserable. I was always afraid to dump him because he represented about 30% of my income. But when I was struggling so hard to stabilize, I could almost barely work at all, so I knew there was no way I could deal with him. I had no choice but to send him packing. It was the best decision I ever made. With the stress of dealing with him off the table, my anxiety decreased, which gave me a boost in job satisfaction. And I've never missed the money. Other clients came along to replace him. 

 

So if there's something that makes being at home a source of anxiety for you, try to think of small ways you might be able to make adjustments. I wouldn't recommend any radical changes at this point in your life, just maybe modest tweaks. For instance, let's say you've had to spend a lot of time in your bedroom because you don't always feel well, and that is depressing you. How about a coat of paint on the walls? Don't underestimate how far little changes like that can go to change your headspace for the better. It creates new and positive pathways in the brain and promotes neuroplasticity for healing. Learning this skill now will still be beneficial long after you've healed and gone on with your life.

 

Hang in there, Matt. This too shall pass.

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Gridley
6 hours ago, thelegend said:

what am I doing wrong?

As Dejavu said, you're not doing anything wrong.  I looked back through some of your recent posts and really it looks to me like you're doing pretty well, considering.  The current situation with the virus is unfortunately conducive to anxiety.  I've had it come and go and come and go throughout my taper.

 

This feet up the wall restorative yoga pose has been really helpful to me when anxiety strikes.  If you can't get your feet all the way up the way, hooking your lower legs over a chair as you lie on the floor also works very well.

 

10 minute Restorative Yoga for Relaxation | Up the wall

 

 

 

 

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thelegend

Shoot guys...I really messed up!!! I meant to take my Zyprexa tonight as usual, accidentally took the Zoloft instead! So I double doses my Zoloft today. Is this going to really screw things up? Really kind of scared, but this has to happen all the time right?

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ChessieCat

No it doesn't happen all the time but yes it does happen.  I've made errors in my dosing several times during my taper.

 

Did you take your Zyprexa?  If not, you need to take that.

 

Tomorrow just take both drugs as usual.

 

Things might be a bit rough for a little while but hopefully it will settle down quickly.

 

Unfortunately we can't say how it will affect you and for how long.  Nobody knows.  All you can do it stay as calm as possible and try not to add anxiety into the mix.

 

At least you know what has caused any issues so just remind yourself of it.  It's happened and you can't change it.  All you can do is do your best to get through whatever the consequences of it are.

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thelegend
5 hours ago, ChessieCat said:

No it doesn't happen all the time but yes it does happen.  I've made errors in my dosing several times during my taper.

 

Did you take your Zyprexa?  If not, you need to take that.

 

Tomorrow just take both drugs as usual.

 

Things might be a bit rough for a little while but hopefully it will settle down quickly.

 

Unfortunately we can't say how it will affect you and for how long.  Nobody knows.  All you can do it stay as calm as possible and try not to add anxiety into the mix.

 

At least you know what has caused any issues so just remind yourself of it.  It's happened and you can't change it.  All you can do is do your best to get through whatever the consequences of it are.


 

ok I was thinking wouldn’t it be better to just not take the Zoloft this morning and just chalk it up to having taken it 8 hours early, rather than doubling up? Yes I took the Zyprexa last night as well.

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