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thelegend

thelegend: hoping to get there

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thelegend

Hi all, my name is Matt, I am a 36 year old husband and father of three whose life has been turned upside down by these drugs. Although after reading the wealth of information on this site, I feel I finally understand what is happening to me, though it doesn’t make going through it any easier. I reinstated Zoloft on May 1st and I know I probably reinstated at much too high a dose, but I unfortunately was following “doctors orders.” It has been a tough four months to say the least, and at times I feel I will be stuck this way forever. However I have gone on vacation twice in the last 4 months. The 1st one was over the Fourth of July, during that time I would say I was 50-60% of my normal self. Only to come back, get to work, and get slammed by waves again. Last week I went on an end of summer vacation with my family, this time I would say I was closer to 75-80% of normal, and hopeful this was finally the beginning of the end for me and I was stabilizing and could in a few months begin a slow taper the proper way. However this past week back home and back to work have been unbearable. Unrelentingly anxiety and akathisia from the second I wake, that eventually calms a bit at night, but sometimes not til like 8-9PM. 

 

My question would be, can being on vacation really make that big of a difference in withdrawal? I would think it was just a fluke, but it has happened twice now. But it is like, almost feeling back to normal, vs not being able to fathom making it through another day. The difference is astounding. Any thoughts would be appreciated, also should I be getting worried that I am 4 months into reinstatement and holding and not stabilizing? Thanks, this site is amazing and all these people are amazing SURVIVORS!

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Carmie

Hi Matt, 

 

Welcome to SA. I’m glad you found this site and things finally make sense to you. Yes, it doesn’t make what we’re going through any easier but it certainly helps to know that there is nothing wrong with us but it’s the meds that are causing all of this havoc.

 

You said you reinstated Zoloft in May. What dosage did you reinstate?

 

How long were you on Zoloft before you went off it? What dosage were you on? Did you cold turkey it or did you taper? If you tapered what was your method? 

 

I’m really sorry that you have akathisia. I’ve had it really bad in the past and it’s one of the worst symptoms. How are you coping with work when you have akathisia? It must be really hard.

 

Stress can ramp up our withdrawal symptoms so being on holiday may have helped them a bit, but sometimes even when people don’t have much stress their symptoms are still severe. These meds are pretty potent. That being said though, the CNS is affected by these meds so if you keep the stress in general as low as possible the symptoms can diminish quite a bit. I know when I have extra stress my symptoms are more severe and the waves take longer to dissipate, so I end up having to hold my taper longer.

 

Four months holding after a reinstatement isn’t long. It has taken some people a year or longer for them to reach a baseline after reinstatement. Some feel the benefits pretty soon afterwards. Once I tapered my meds too fast so I updosed within a week and a couple of days later I was back to baseline. It does take a lot of people up to six months to stabilise though after reinstatement, everything is a slow process when it comes to these meds. 

 

Take care, sending hugs🤗

 

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Tom37

Hello,

 

4 months is not long at all in terms of reinstatement and it can take a lot longer to get stable. There is a thread from brassmonkey which goes into more detail about it all which you should take a look at. We are all unique in how we heal but we do get there.

 

For me personally it doesn’t seem to matter what I’m doing for a wave to start although for others different things definitely can set them off.

 

The most important thing to remember is that you are having windows which is a clear sign of healing. Unfortunately the waves mean more healing is needed but you should see your windows get clearer the further you go but don’t be surprised if a big nasty wave hits later on as they can do that too. 

 

It can be slow and frustrating and you may even think your further along than you are but you will get there.

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thelegend

@Carmie, now I have learned that I have pretty much done everything wrong. Last year (February) I decided I didn’t need the Zoloft anymore and since my doctor said I was on the “lowest dose” I could simply stop taking them. I got some withdrawal symptoms in the 1st few weeks, I was a little easy to cry, and would get very lightheaded, but nothing too bad, then they went away and I felt great for a couple of months. Started feeling anxious again, like my mind was always racing and “checking in” on how I was feeling. So I decided to start the Zoloft again...and wow was that a mistake. Started at 50mgs cause that was always my dose, and I quickly couldn’t eat, I would wake in a panic, and had all sorts of unpleasant symptoms. When the Zoloft didn’t “work” after 6 weeks my doctor tried Prozac and then after 8 weeks of that we stopped ADs altogether cause I was barely hanging on I felt I could get back to normal without them as it wasn’t THAT bad until I tried to restart the Zoloft. After two months off of everything I still was getting no better so back to the doc I went and he prescribed lexapro and Zyprexa. The Zyprexa helped from the 1st night (but now I think probably is doing no good). I have these meds a good run of about 8 months, but although better, was still having struggling, then I told my doctor “I think the Zyprexa helps, but maybe the lexapro is doing more harm than good.” Quick taper from 10 mgs of lexapro from November to February of this year, and I just got much, much worse. Went to a new doctor this time as I felt I needed a fresh perspective and he prescribed 50mgs of Zoloft since I did so well on Zoloft for 10 years, and still keep the 2.5 mgs of Zyprexa.

 

That was the beginning of May and once again, another change and it just made me worse. I started researching what has happened to me the last 2 years as I have never experienced anything like this and found this site. It all makes so much sense, my CT messed up my CNS and all the changes I have been doing have just made things worse. Not to mention always going back to my original dose or a therapeutic dose as the doctors call it, was always too high to reinstate.

 

So now I sit, 4 months into reinstatement of 50mgs if Zoloft and still taking 2.5mgs of Zyprexa and struggling to just get through my days. As I said, the two vacations I have taken, I have been MUCH better but I always come back to this (story of my life the last couple of years). Hoping that a dedication to keeping everything stable will finally pay off and I will get my life back. At times I feel fine, like last night the anxiety and akathisia totally went away after about 5PM. Only to all come back full force again this morning.

 

My current symptoms are: constant anxiety and akathisia (better at night and really bad in the mornings, oftentimes before I even get up), shakey hands (not as bad as right when I reinstated), burning eyes (seem to have started to get better the last month or so, but I have thought this before and it flares up again), burning arms and legs (was really bad in May, now it is almost gone), feeling hot in my feet, overall feeling of dread and “how can I keep going on?” My biggest worry is it will never get better, I have essentially been in a varying state of unwell for 2 years with no end in sight and that is really discouraging. Will I eventually stabilize? Is it so weird I feel that might better at nights and then especially on vacations?

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thelegend

@Tom37

how are you doing today Tom? Read your post on your recent wave and coincidentally, or not, I too was in a great window last week, and took some ibuprofen before this big wave hit. Did anyone answer you, can that cause problems? I figured it was way safe, and maybe it is, but that is pretty coincidental.

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thelegend

Would you guys suggest just continuing to hold at 50mgs of Zoloft and 2.5mgs of Zyprexa. Having a horrible day today, anxiety through the roof, after feeling pretty much 100% normal last night.

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Cocopuffz17
3 hours ago, thelegend said:

@Tom37

how are you doing today Tom? Read your post on your recent wave and coincidentally, or not, I too was in a great window last week, and took some ibuprofen before this big wave hit. Did anyone answer you, can that cause problems? I figured it was way safe, and maybe it is, but that is pretty coincidental.

I would say yes. The way NSAID’s cause issues in your GI tract. Which is no different than eating unhealthy food and causing waves to flare up. 

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Tom37

I don’t think it caused my wave as looking back I wasn’t feeling too good Thursday and Friday plus I injured my back so had been in quite a lot of pain/discomfort. 

 

Waves just tend to happen for me with no reason as to why other than my body needs to go through more readjustment.

 

Thankfully the worst symptom of this wave that made me struggle so much has eased a lot and allowed me to get a half decent sleep. Still in it but it becomes far more tolerable now.

 

Dont think too much why waves happen as  they happen regardless. 

 

Saw your drug history so definitely don’t be surprised if it takes you a while to stabilise after all those changes but it will happen and hopefully it happens soon.

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RichT
20 hours ago, Tom37 said:

Hello,

 

4 months is not long at all in terms of reinstatement and it can take a lot longer to get stable. There is a thread from brassmonkey which goes into more detail about it all which you should take a look at. We are all unique in how we heal but we do get there.

 

For me personally it doesn’t seem to matter what I’m doing for a wave to start although for others different things definitely can set them off.

 

The most important thing to remember is that you are having windows which is a clear sign of healing. Unfortunately the waves mean more healing is needed but you should see your windows get clearer the further you go but don’t be surprised if a big nasty wave hits later on as they can do that too. 

 

It can be slow and frustrating and you may even think your further along than you are but you will get there.

 

Hi TheLegend,

 

I can echo what Tom has said. 4 months is not long. I reinstated almost 5 months ago now and I’m getting only occasional windows, though they seem to be getting more frequent. It seems to take the brain a long time to adjust to a new drug regime - not surprising as I guess we are rewiring ourselves. Keep at it!

 

You’re clearly someone, like me, who responds strongly to stress while in withdrawal. I don’t there’s any way round that, just do the best you can with it!

 

warmest wishes

 

Rich

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thelegend

Wow I really appreciate all the replies, so good to talk to people who understand. This is such a frustrating process, felt I was finally coming out of it a week ago, now I feel I will never be well again. Teased last night with just a great anxiety free night, only to come crashing down this morning. Hoping I am at least headed in the right direction.

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thelegend

What does everyone think? Should I just continue to stay on my current meds until I feel better, then start to taper? What if that never happens? (my biggest fear in all of this).

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Gridley
11 minutes ago, thelegend said:

What does everyone think? Should I just continue to stay on my current meds until I feel better, then start to taper? What if that never happens? (my biggest fear in all of this).

 

It will happen, thelegend, it just can take quite a while as Rich and Tom37 said.  There will be ups and downs (windows and waves), but the fact that you're having some good along with the bad is very encouraging.  I would continue to hold.

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thelegend
33 minutes ago, Gridley said:

 

It will happen, thelegend, it just can take quite a while as Rich and Tom37 said.  There will be ups and downs (windows and waves), but the fact that you're having some good along with the bad is very encouraging.  I would continue to hold.

 

Yeah, there are good, but it never lasts. Was hoping to be doing better than I am 4 months in. I don’t have the burning arms, and the burning eyes are much reduced. So maybe those are good signs?

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Cocopuffz17
5 minutes ago, thelegend said:

 

Yeah, there are good, but it never lasts. Was hoping to be doing better than I am 4 months in. I don’t have the burning arms, and the burning eyes are much reduced. So maybe those are good signs?

Those are definitely good signs! Keep at it!

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Gridley
51 minutes ago, thelegend said:

 

Yeah, there are good, but it never lasts. Was hoping to be doing better than I am 4 months in. I don’t have the burning arms, and the burning eyes are much reduced. So maybe those are good signs?

Excellent signs.

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Rhiannon

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. 

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thelegend

Thanks @Rhiannon very good info! Good to know you feel I am “getting there” oftentimes it feels I am stuck in neutral. However, the good nights have been pretty consistent and are much more consistent than they were in the beginning.

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thelegend

I am struggling SO bad! The last 3 days I haven’t even been getting any better at night. I don’t know what to do, almost 4 months into a reinstatement and a hold and the past couple of weeks feel as bad as when I first reinstated probably too high of a dose. Am I ever going to get better, I don’t know if I can keep doing this!

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Tom37

Sorry to hear your going through a rough patch at the moment.

 

It will pass like all waves do and after the wave you hopefully will feel the changes the body has done. Unfortunately big waves can hit at anytime so try not to get discouraged about it. It doesn’t mean your going backwards even though you feel like it. 

 

It’s so easy when your struggling to get caught up in the here and now which is our current reality when the truth is that in a few weeks/months time you will most likely be feeling a lot better as your baseline continues to improve.

 

I know now it’s hard but you will get through this period and when you do you will have that extra bit of confidence to get through the next bad wave.

 

Until your stable and almost or are wd symptom free the body will still be working on getting back to its normal self so it’s all waves and windows till it does. Waves will get easier and windows longer and clearer so it gets better with time.

 

Hang in there! 

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thelegend

@Tom37, thanks Tom. Feels like I am just getting worse and worse the last week and a half so the is frustrating. The last 4 months I have only really felt good on vacation, so it is hard for me to have confidence I will get a window while at home and working when I haven’t really been able to. I had been able to count on feeling better at night, which really helped to get me through the daily bad. Last 3 nights haven’t really got that relief, so that has really sucked. Hopefully a real window is coming, this feels like a never ending wave.

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Dejavu

I can so relate! All the hope that a window brings, comes crashing down in doubt and disappointment when that window closes. I get it. But it will get better. Let me share my experience with you. Perhaps it will help you.

 

Like you, my poison is sertraline, and I reinstated too high of a dose after a 3 week taper, which is basically a CT. Then I spent 4 months changing that dose (about 4 times) in a desperate but misguided attempt to get some relief. Big mistake! Things got sooo much worse! I got almost ZERO windows and was basically bedbound. I cannot even remember how many symptoms I had (or maybe I just don't want to). I've never been so ill in my life. But when I stopped changing things up, and committed to staying on one dose, for better or worse, I started to stabilize. And there have been many days along the way that I doubted that decision. I would have bad days where I felt so ill that I had to fight the urge to do something - anything! - to try to help myself. I was fixated on the idea that I was wasting time by sitting still. But common sense prevailed (with considerable help from SA!), and here I am 5.5 months down the road, and I am gaining more stability every day. I have one remaining symptom that is bothersome, and that is dry, burning eyes and blurry vision in one eye. Some days it is better than others. And a few other symptoms still come and go, which is why I plan to continue to hold at this point. But gone completely are the cortisol spikes, akathesia, insomnia, anxiety, muscle twitches, weakness, morning anxiety and a plethora of other symptoms. I am back at work. I am back playing music. I am not perfectly well. But I am functional, and continuing to improve. Just as you will, if you stay the course. To quote Brassmonkey: time and patience; patience and time.

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Tom37

All waves feel like they will never end but they do. It’s a very common way of thinking when in a wave. You will get windows when at home and working it’s just you might not be there yet in your recovery. But as time passes they will come. 

 

In my first few months everything felt like a permanent wave then as my baseline increased the windows started being more defined so I knew I was healing. Same will happen to you to.

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thelegend

Wow @Dejavu and @Tom37, your stories and encouragement are so helpful. It is so good to know I am not the only one and that windows do come and it gets better (at least it had for you). Actually ended up being fairly manageable yesterday, after a really bad morning, night was a window. Woke today to really bad anxiety again, hopefully it follows yesterday’s pattern.

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DebbieC61
20 hours ago, Dejavu said:

I can so relate! All the hope that a window brings, comes crashing down in doubt and disappointment when that window closes. I get it. But it will get better. Let me share my experience with you. Perhaps it will help you.

 

Like you, my poison is sertraline, and I reinstated too high of a dose after a 3 week taper, which is basically a CT. Then I spent 4 months changing that dose (about 4 times) in a desperate but misguided attempt to get some relief. Big mistake! Things got sooo much worse! I got almost ZERO windows and was basically bedbound. I cannot even remember how many symptoms I had (or maybe I just don't want to). I've never been so ill in my life. But when I stopped changing things up, and committed to staying on one dose, for better or worse, I started to stabilize. And there have been many days along the way that I doubted that decision. I would have bad days where I felt so ill that I had to fight the urge to do something - anything! - to try to help myself. I was fixated on the idea that I was wasting time by sitting still. But common sense prevailed (with considerable help from SA!), and here I am 5.5 months down the road, and I am gaining more stability every day. I have one remaining symptom that is bothersome, and that is dry, burning eyes and blurry vision in one eye. Some days it is better than others. And a few other symptoms still come and go, which is why I plan to continue to hold at this point. But gone completely are the cortisol spikes, akathesia, insomnia, anxiety, muscle twitches, weakness, morning anxiety and a plethora of other symptoms. I am back at work. I am back playing music. I am not perfectly well. But I am functional, and continuing to improve. Just as you will, if you stay the course. To quote Brassmonkey: time and patience; patience and time.

Thanks for the encouragement.

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thelegend

Had a decent holiday weekend. Anxiety would come and kick my butt at times, but overall I managed and had some moments of feeling really good. Sunday morning was tough, and had some bad times Monday afternoon but again I managed.

 

We decided to get a puppy yesterday, maybe not the best timing as I am still in the thick of not being stable and the added stress may not be so good for me, but it is what I have always wanted and the kids are super pumped about it so, I will make it work and enjoy it even more when I am stable.

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Gridley
30 minutes ago, thelegend said:

We decided to get a puppy yesterday,

I think you'll find that the distraction, companionship, amusement and love from the pup will outweigh any negatives

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thelegend
2 hours ago, Gridley said:

I think you'll find that the distraction, companionship, amusement and love from the pup will outweigh any negatives

 

Yeah I hope so, seems for whatever reason I am very sensitive to stress right now (fine on vacation, not at all when I get home).

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RachelSusan

I think a pup is a great idea.  Please tell us a little about your new dog when you feel up to it. Large, small?  Long hair, short hair, etc.

 

Once our CNS has been affected by withdrawal it is normal to be super sensitive to stress. Maybe you can pass along some of the dog training to other members of the family??? Anything to keep you stress factor as low as possible, at least for now.

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thelegend
15 hours ago, RachelSusan said:

I think a pup is a great idea.  Please tell us a little about your new dog when you feel up to it. Large, small?  Long hair, short hair, etc.

 

Once our CNS has been affected by withdrawal it is normal to be super sensitive to stress. Maybe you can pass along some of the dog training to other members of the family??? Anything to keep you stress factor as low as possible, at least for now.

 

Great idea, my kids are 12, 9, and 5 so they should be able to help with a lot. We got a Doberman, I had when I got married 15 years ago but he dies young when his stomach flipped. I have wanted one ever since, so even though timing may not be great, it will be really fun and good for my family.

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thelegend

So the last couple of days I have had burning arms in the morning. This was a symptom I had pretty bad right when I reinstated 4 months ago, but has been gone for about a month or a month and a half. Really it was the only thing I could really point to that would suggest improvement the last 4 months. I am really frustrated it is back and feel like I am just getting worse and worse, why am I not stabilizing after 4 months? Just really frustrated and feeling like it will never get better.

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thelegend

Anyone with any thoughts, why would this come back after being gone for over a month? Does it mean I am going backwards? Am I just spinning my wheels with this and I will never stabilize?

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LadyBartonella
18 minutes ago, thelegend said:

Does it mean I am going backwards? Am I just spinning my wheels with this and I will never stabilize?

You will stabilize. 

In my case it took 8 months from to high reinstatement. 

 

It will for sure. 

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thelegend
23 hours ago, LadyBartonella said:

You will stabilize. 

In my case it took 8 months from to high reinstatement. 

 

It will for sure. 

 

Good to know it can take that long and still happen. 8 months is a long time, but heck I guess I am more than halfway there. It seems that everyone eventually stabilizes, at least that is what I keep telling myself.

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thelegend
On 9/3/2019 at 11:30 PM, ChessieCat said:

And a pic too please 🐾.  Post it here:  pets-and-love-aww-post-your-pics-here

 

Tried but all my pictures are too big it seems

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thelegend

I have started getting hot or burning sensations in my feet, with being on Zyprexa should I be concerned about diabetes? Kind of freaking me out to be honest.

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