DaveB: trying to stop a roller coaster year

[DaveB]

Just read @pug's thread and success story thanks to hearing about it on @Waterfall's thread. Really spoke to me and I noticed a lot of similarities that give me hope. Good stuff, give it a read if you get a chance. 

[Waterfall]

Hey Dave, 

I'm really glad that you've been feeling a bit better.  

And I'm glad reading that post was helpful for you. 

 

I think I should go back and read it again too... 

[DaveB]

I woke to a cortisol spike that doesn't want to go away this morning, I actually had a pretty good day yesterday so thought I was headed into another window. A week ago I was doing so well for an extended amount of time, never thought I would be back to this again. This is just so frustrating, I would give anything to have this go away. Hopefully the anxiety passes this morning and I don't have to just grind out the day. I hate never being able to trust improvement. 

[wantrelief]

Hey Dave - I responded to you on my thread but thought I'd drop by yours as well.  I am so sorry you woke up with a cortisol spike that isn't going away this morning.  Hopefully you'll feel better as the day passes.  It sounds like you have had quite a bit of improvement until more recently so that is hopeful.  Hang in there, Dave!

[Rosetta]

Sending all the best vibes, Dave.  Hang in there!

[DaveB]

1 hour ago, wantrelief said:

Hey Dave - I responded to you on my thread but thought I'd drop by yours as well.  I am so sorry you woke up with a cortisol spike that isn't going away this morning.  Hopefully you'll feel better as the day passes.  It sounds like you have had quite a bit of improvement until more recently so that is hopeful.  Hang in there, Dave!

 

1 hour ago, Rosetta said:

Sending all the best vibes, Dave.  Hang in there!

 

Thanks guys, just a really bad day today. @brassmonkey should I just continue to hold even though I am still not stable after all this time. Can stability even happen this far into a hold? Should I consider an updose? Start a Zyprexa taper? or really just keep on holding?

[brassmonkey]

Just keep doing what you're doing Dave.  The windows of feeling better are a very good sign that things are settling down.  It's a very long frustrating road trying to get stable, but you're making some real progress. At best an updose or adding a new drug would only stir the pot and start the clock over again, it more than likely would cause some really big problems and make things a lot worse.

[DaveB]

1 hour ago, brassmonkey said:

Just keep doing what you're doing Dave.  The windows of feeling better are a very good sign that things are settling down.  It's a very long frustrating road trying to get stable, but you're making some real progress. At best an updose or adding a new drug would only stir the pot and start the clock over again, it more than likely would cause some really big problems and make things a lot worse.

 

Thanks BM. It helps so much to get a perspective from someone who knows about this stuff and can see the whole picture. Just frustrated again as I was planning my taper earlier in the week, and today feel back at square one. Anxiety has reduced considerably from this morning, so I am thinking more clearly again. 

[DaveB]

I recently had blood work done and I am VERY low in testosterone. Makes sense as I had testicular cancer when I was 20. Has anyone done hormone therapy in withdrawal? Is this something that could help me, or better saved for a time when I am much more stable?

[DaveB]

4 hours ago, brassmonkey said:

Just keep doing what you're doing Dave.  The windows of feeling better are a very good sign that things are settling down.  It's a very long frustrating road trying to get stable, but you're making some real progress. At best an updose or adding a new drug would only stir the pot and start the clock over again, it more than likely would cause some really big problems and make things a lot worse.

 

and as far as a taper, bad idea to start Zyprexa taper while I am still unstable, correct? 

[brassmonkey]

Yes.  Changing anything means that the body has to readjust and if it's not stable it doesn't really know where to adjust to.

[Carmie]

4 hours ago, DaveB said:

 

and as far as a taper, bad idea to start Zyprexa taper while I am still unstable, correct? 

 

Hi Dave, 

 

How’s your day going? 

 

Yes, please don’t taper while you’re still feeling unstable. I’ve done that a couple of times and I’ve payed for it. You don’t get any further, you just end up being in a wave a lot longer. 

 

Slow n steady wins the race, sending hugs xx

 

 

[Rabe]

Hi Dave,

I was advised to hold and I have to say it has helped...tho my inclination is to rush off these meds!!  Have learned with all the reading and personnel experience what a setback that can be.  I have found things as 'benign' as topical antibiotics to cause me to slide back, so I don't change anything much at this point....and my system seems to like it.  Take care...sounds like things are going well!!

[Rosetta]

I understand your frustration, Dave.  What an insane ride this is.  I want to get off of it!

[DaveB]

On 5/26/2018 at 10:42 PM, brassmonkey said:

Yes.  Changing anything means that the body has to readjust and if it's not stable it doesn't really know where to adjust to.

 

Sounds good, should I be concerned by the fact it is taking so long to get stable? Does it usually take this long?

[DaveB]

Struggling this morning, anxiety is very high. I did just change to a new generic brand of Zyprexa Sunday night, could this effect something? Not that I was really doing well before though so I hate to blame it on this. I am really frustrated, last week I thought I had stabilized, now back at square one. Am I ever going to get better? Will this nightmare ever end?

[Dalalea]

58 minutes ago, DaveB said:

I thought I had stabilized, now back at square one.

No! Not back to square one. That's where you were before building your coping skills and educating yourself on this process.

Just a little wave.

I hear it's very common to notice a change in brand for a few days. I've even seen people recommend stabilizing from a brand change.

The next window is right around the corner!

[DaveB]

33 minutes ago, Dalalea said:

No! Not back to square one. That's where you were before building your coping skills and educating yourself on this process.

Just a little wave.

I hear it's very common to notice a change in brand for a few days. I've even seen people recommend stabilizing from a brand change.

The next window is right around the corner!

 

Thanks Dalalea. I found this quote from @brassmonkey on someone else's thread that has helped me today as I think it applies to me. I am going to repost it to my thread for anyone who needs some help and better understanding:

 

"There have been a good number of dose changes in the past several months so we need to allow a good amount of time for your body to process them and get to a stable place before making  any more changes.  A stable place is not going to be where there are no symptoms but rather an evening out of the symptoms so there are not any big swings over several weeks time.  Once stability is recognized it's generally a good idea to wait several more weeks for "background healing" to catch up before making any new reductions.  It is very important to allow time for the "background healing" to take place.  As I mentioned above there have been a lot of physical changes made to your CNS that have to be sorted out and corrected.  We frequently can't feel this happening, but it is very important that we give it the time it needs.

 

There are going to be changes in emotions and symptoms that happen through out the day and over the course of a week or so.  These are normal fluctuations.  The Windows and Waves pattern of symptoms is a longer view and the symptoms are much more pronounced.  It's called a Wave because the symptoms crash over you, drag you down and try to drown you, and a Window because it's like a breath of fresh air after being suffocated. Waves are usually protracted, lasting several week to months, while Windows frequently start small, fifteen minutes or so and become stronger over time."

[Hazel]

Hi Dave.

I see we are in a similar place.  This is really hard when you think you are making progress and then you go back to feeling awful again.  I wish For the both of us that this nightmare ends soon and we get a nice super long window!  I am here for you😊

[DaveB]

1 minute ago, Hazel said:

Hi Dave.

I see we are in a similar place.  This is really hard when you think you are making progress and then you go back to feeling awful again.  I wish For the both of us that this nightmare ends soon and we get a nice super long window!  I am here for you😊

Thanks Hazel, right back at you!

[DaveB]

3 hours ago, Dalalea said:

I hear it's very common to notice a change in brand for a few days. I've even seen people recommend stabilizing from a brand change.

 

That is interesting, I never would have thought. Something that usually resolves itself quickly?

[Rosetta]

Maybe get some of the old brand and slowly switch over.  I've seen that recommended.  Might require some crushing.

 

So sorry, Dave.  I wish you hadn't been switched.  Could you go back?

[DaveB]

1 hour ago, Rosetta said:

Maybe get some of the old brand and slowly switch over.  I've seen that recommended.  Might require some crushing.

 

So sorry, Dave.  I wish you hadn't been switched.  Could you go back?

 

I could probably go back, but it would require a new prescription being called into Walgreens instead of the closer to my home Smith's Pharmacy. I didn't think anythin of it, just "oh well Smith's is closer and that is where my Paxil is filled so why not fill Zyprexa there too. It wasn't until I noticed the pills look much different that I thought anything of it. To be fair I have not been doing well before this switch, so I am not sure how much, if anything I can attribute to the switch. However, today is an absolute grind through the muck. Makes me doubt any improvement has happened. Coming up on my 1 year mark on Paxil (June 1st) and still trying to stabilize. I am not sure I feel any better this year than last year at this time. Maybe that is just the wave talking (probably is).

[DaveB]

If I hadn't already been on Paxil so long I would switch back to Zoloft, I just think I have Zoloft withdrawal from my CT in November 2016 and the Paxil is not doing a very good job of masking it. Could that be the case?

[Hazel]

12 minutes ago, DaveB said:

If I hadn't already been on Paxil so long I would switch back to Zoloft, I just think I have Zoloft withdrawal from my CT in November 2016 and the Paxil is not doing a very good job of masking it. Could that be the case?

Dave, 

I think that is a big part of my issue as well.  I can’t say for sure obviously, but I’ve felt for a while that the main cause of my problems is from the Zoloft withdrawal.

[DaveB]

40 minutes ago, Hazel said:

Dave, 

I think that is a big part of my issue as well.  I can’t say for sure obviously, but I’ve felt for a while that the main cause of my problems is from the Zoloft withdrawal.

 

Exactly, but now we have been on Paxil for so long we are kinda stuck between a rock and a hard place.

[Hazel]

10 minutes ago, DaveB said:

 

Exactly, but now we have been on Paxil for so long we are kinda stuck between a rock and a hard place.

I know.  I am hoping that since it’s been almost 20 months since I stopped the Zoloft I will start to feel better soon.

[DaveB]

Hopefully a mod can stop by and let me know how serious a change in manufacturer is and if I am kind of psyching myself out and just need to ride it out or if I need to go back to the original manufacturer. Also I just read @brassmonkey's essay on "How long does this take?" and wow some great info there. My only question would be how do you know if you are suffering from "destabilization" and need to hold, or from "poopout" and need to taper? If the symptoms mimic each other, how do I know I am not in poopout and holding is the right thing to do. Good to know from reading that sometimes "stabilization" from a reinstatement just takes a damn long time. 

[brassmonkey]

"My only question would be how do you know if you are suffering from "destabilization" and need to hold, or from "poopout" and need to taper?"

 

Although the symptoms are quite similar the causes are very different.  Another term for poopout is tolerance.  The human body doesn't like what psych drugs do to it and tries to work around them.  Because the drugs are so powerful this is a very time consuming process.  In most cases it takes many years to develop tolerance, frequently in the ten year plus range.  Destabilization is almost the exact opposite. It is caused by making too many or too large of changes in dosage.  Once the drug has control of the body that specific amount s required to maintain that control.  Change the amount or the drug and the body gets very confused.  Each time this happens it makes the body more sensitive to the changes and makes it harder for the body to return to equilibrium (stability).

 

When I used to run track we had a training exercise called "wind sprints", you'd run full speed for fifteen yards, stop touch the ground, turn around and run back.  Repeat this fifteen or twenty times and take a break, then do it again.  You got very tired, out of breath and dizzy. This would be destabilization. Sometimes we'd run "cross country"  a steady run of ten to fifteen miles with out a break.  By the end you'd get very tired, out of breath and dizzy. This would be poopout.

[Rosetta]

I would go to the pharmacy and find out if you can get the brand you used to use.  If not I would get it from the old pharmacy.  You don't need this possible problem in the mix.  My two cents.

[Cheeky]

5 hours ago, Hazel said:

Dave, 

I think that is a big part of my issue as well.  I can’t say for sure obviously, but I’ve felt for a while that the main cause of my problems is from the Zoloft withdrawal.

Hey Hazel and Dave,

i just want to send  hugs 🤗 and to let you know I understand how hard it is .

        I follow  you both and find it hard not being able to give you advice as I’m no expert in any of this .

I’m in a lot of forums and for what I’ve read , when you’ve been on a perticular drug for a long time ,when you switch to something else ,even in the same class of ssri”s it doesn’t seem to cover the withdrawals from the one you were on  for a long time. That’s what I think is happening to you both and also your CNS is so sensitive that any slight change, like lack of sleep, sugar  , makes a big difference.

[Cheeky]

Dave  when I changed brand of Paxil,  I crashed and was amazed to think that would send me into withdrawal and I know slot of people that has happened to. I ended up having to wait it out to feel better again . 

[Carmie]

16 hours ago, DaveB said:

Struggling this morning, anxiety is very high. I did just change to a new generic brand of Zyprexa Sunday night, could this effect something? Not that I was really doing well before though so I hate to blame it on this. I am really frustrated, last week I thought I had stabilized, now back at square one. Am I ever going to get better? Will this nightmare ever end?

 

 

Hi Dave, 

 

Did u end up going to your original brand again? 

 

The other week the chemist gave me the original brand of Seroquel n I was always on generic, I ended up swapping it back to generic straight away. The chemist said that it cost the same, I said it has nothing to do with cost but I was worried about the differences, if any. They were fine to swap it over. 

 

It may not have affected me but I wasn’t going to risk it.

 

We are so sensitive. The tiniest changes can knock us around. There are some people though that have no problem changing from brand names to generic or vice versa. We are all different.

 

Nothing is black and white in this tapering saga we are going through. 

 

Hope you stabilise a little soon Dave. 

 

Sending hugs🤗

 

 

[DaveB]

15 hours ago, brassmonkey said:

When I used to run track we had a training exercise called "wind sprints", you'd run full speed for fifteen yards, stop touch the ground, turn around and run back.  Repeat this fifteen or twenty times and take a break, then do it again.  You got very tired, out of breath and dizzy. This would be destabilization. Sometimes we'd run "cross country"  a steady run of ten to fifteen miles with out a break.  By the end you'd get very tired, out of breath and dizzy. This would be poopout.

With all the changes that I have made, it is almost certainly wind sprints for me.  What would you do about my manufacturer situation?

 

14 hours ago, Rosetta said:

I would go to the pharmacy and find out if you can get the brand you used to use.  If not I would get it from the old pharmacy.  You don't need this possible problem in the mix.  My two cents.

That would probably be best, I am three pills into the new manufacturer, feeling better so far today and I still get my breaks at night. maybe see it through at this point? Not sure, I don't want to do anything wrong here, not sure if jumping back to the old prescription is good or bad at this point as it is another change. 

 

12 hours ago, Cheeky said:

Dave  when I changed brand of Paxil,  I crashed and was amazed to think that would send me into withdrawal and I know slot of people that has happened to. I ended up having to wait it out to feel better again . 

So did you change back to your old brand or ride out the crash? So weird I never would have thought the manufacturer would make a difference, but from doing a little research on this site I am mad at myself for not knowing this. 

 

8 hours ago, Carmie said:

Did u end up going to your original brand again? 

 

The other week the chemist gave me the original brand of Seroquel n I was always on generic, I ended up swapping it back to generic straight away. The chemist said that it cost the same, I said it has nothing to do with cost but I was worried about the differences, if any. They were fine to swap it over.

[brassmonkey]

Hey Dave-- usually if there's a problem with switching  brands it shows up pretty quickly. Three days with no problem is a good sign that there won't be any problem.  Most people can get away with it.  Because of the ones who have problems we recommend that, if possible, they cross taper between the two brands.  That seems to make the change a lot easier.  If a person is tapering at the time we also recommend that they do a hold for several weeks to let the change stabilize.  In affect we treat a brand change as a "dose change event" with the same hold time.  Then again, some people just can't tolerate the different brand and have to switch back and take time to restabilize before they can continue.

 

I think right now just ride it out.

[Cheeky]

4 hours ago, DaveB said:

With all the changes that I have made, it is almost certainly wind sprints for me.  What would you do about my manufacturer situation?

 

That would probably be best, I am three pills into the new manufacturer, feeling better so far today and I still get my breaks at night. maybe see it through at this point? Not sure, I don't want to do anything wrong here, not sure if jumping back to the old prescription is good or bad at this point as it is another change. 

 

So did you change back to your old brand or ride out the crash? So weird I never would have thought the manufacturer would make a difference, but from doing a little research on this site I am mad at myself for not knowing this. 

 

Dave I just rode it out because it was easier to get that brand near we’re I live .