thelegend: hoping to get there

[thelegend]

Is there any hope for recovery for me at this point? After 5 months it seems I have failed in reinstatement. Now what?

[thelegend]

2 hours ago, Guilietta said:

Hello T.L.

 

Welcome, hello and hope you and your family are enjoyiing the new puppy and he/she you.   

 

I'm sorry about the persistent waves (and glad you have windows which there are a few more of now?).  The many symptoms and patterns you have described are much like mine. I'm just a civilian here - but after a huge drop in my dose in December - following a reinstatement after a CT - I went through months of anxiety, panic, jitteriness, just hell. I had 1-2 months where I had a lot of good days. Then - I was hit with 2 nasty weeks. I thought I had fallen off the trolley. Recovered. 2.5 months they come back to roost for 10 days off and on. Seems to be a pattern that I see with other folks. Symptoms range the gamut - pins and needles, brain zaps, incapacitating dizziness and blurry vision, trouble typing, etc.

 

Well - could go on. I've seen a gradual improvement - since the major drop off in dosage in December.  It takes a while to stabilize - I held for 2.5 months before having the courage to make a little cut.

 

Stress - whether a social outing or other - is a trigger for a wave even if brief. Otherwise, waves can come and go as they please.

 

Well - just a quick hello. Ping me any time. Yes - we're all survivors here. And we're going to free ourselves from these damn drugs. Even it takes longer than we'd like - we'll eventually get there.  

 

G.

 

I hope you are right that we eventually get there, this has just been so long and hard. So are you currently tapering? I can’t imagine ever feeling well enough to actually start a taper again at this point. I would like to do the @brassmonkey slide when I get there, but boy, that feels like a pipe dream at this point that I will ever feel well enough to take that step in the journey.

[Giulietta]

3 hours ago, thelegend said:

I do think I am maybe getting more good times, but the bad times feel as bad as ever. I have dropped some of those physical symptoms so hopefully that is a good sign. I just wish I knew it would for sure get better after all this time.

 

Are you documenting this in a daily symptom log? If you keep a log (I write daily dose, symptoms, etc. in a notepad) you can see how you are actually doing over a period of time and to see possible triggers. Maybe you are already doing this. 🤔  You might rate symptoms as well.   More 'good times' are encouraging as are seeing some of the physical symptoms disappear. The period of time it takes to stabilize I think is variable and I will leave it to the veterans and mods to comments.

 

 

[Giulietta]

35 minutes ago, thelegend said:

this has just been so long and hard. So are you currently tapering?

 

I will respond to your message about my taper, etc. - as it is fairly unique and don't want to hijack your page. I would proceed with the @brassmonkey slide taper based on my experience with this. A 10% monthly cut all at once would be too much for me tolerate. 

[thelegend]

13 minutes ago, Guilietta said:

 

Are you documenting this in a daily symptom log? If you keep a log (I write daily dose, symptoms, etc. in a notepad) you can see how you are actually doing over a period of time and to see possible triggers. Maybe you are already doing this. 🤔  You might rate symptoms as well.   More 'good times' are encouraging as are seeing some of the physical symptoms disappear. The period of time it takes to stabilize I think is variable and I will leave it to the veterans and mods to comments.

 

 

 

Yes I do keep a daily log and I rate my morning, afternoon, and night on a scale of 1-10. Seems it has gotten better, but man it is very slow if any improvement, and very uneven.

[Giulietta]

13 minutes ago, thelegend said:

Yes I do keep a daily log and I rate my morning, afternoon, and night on a scale of 1-10. Seems it has gotten better, but man it is very slow if any improvement, and very uneven.

 

Awesome about keeping the log.  And getting better is excellent. Healing is not linear - there are some links that explain this - so this may explain why you say it is unevent. Some symptoms for me improved (but not gone away) and others have cropped up. Is that what you mean by uneven?

[thelegend]

30 minutes ago, Guilietta said:

 

Awesome about keeping the log.  And getting better is excellent. Healing is not linear - there are some links that explain this - so this may explain why you say it is unevent. Some symptoms for me improved (but not gone away) and others have cropped up. Is that what you mean by uneven?

 

Yes, exactly. Some go away, new ones crop up, the ones that went away come back. Anxiety feel manageable for a few days, then bad as ever...etc.

[Giulietta]

13 hours ago, thelegend said:

Yes, exactly. Some go away, new ones crop up, the ones that went away come back. Anxiety feel manageable for a few days, then bad as ever...etc.

 

I would add that when things come back they are often not as severe and don't last as long. One thing for me has been tinnitus. It has been in general less bad and less frequent. Anxiety has been overall less worse although there are many bad days. New things pop up Just to clarify on my experience.

 

It's nice to see the survivor stories to give us more hope and support. 

[thelegend]

On 10/4/2019 at 6:48 PM, RachelSusan said:

 

I know you are having a hard time of it but it does appear to me that you are improving.  Frustrating, I know. I hope you get another window again soon.

 

Warm wishes.

 

 

 

This is really good to hear as sometimes in the thick of it, the improvements are hard to find. Hopefully with some physical symptoms getting better the anxiety won’t be far behind.

[thelegend]

On 10/4/2019 at 8:02 PM, lexapoison said:

Legend. It sounds like you were doing better which is awesome. I’m sure this is just a little step back and you’ll be back better than ever very soon. Pretty sure windows and waves in reinstatement is completely normal and you’re probably just in a wave right before a big window! Hang in there!

 

Hey! Thanks for dropping in. Yeah that is what I am hoping is that behind all these fluctuations and waves, I do have an improving baseline. I do believe that is the case, but man is it slow improvement.

[thelegend]

Woke to extreme anxiety and burning arms today...so tired of this! Am I ever going to get better?

[Cocopuffz17]

37 minutes ago, thelegend said:

Woke to extreme anxiety and burning arms today...so tired of this! Am I ever going to get better?

 

Yes you will! Slowly but surely. I remember feeling so down and out that I thought there was no way it would get better. It does, I know it is really really tough to imagine. But it does happen. You got this! Everyday that passes is one day closer to being healed! 

[Giulietta]

4 hours ago, thelegend said:

Woke to extreme anxiety and burning arms today...so tired of this! Am I ever going to get better?

 

It is really tiring and we wonder when on earth we will live free from this.  I believe I will get better. I am grateful I am not in a much worse situation than the one I was in a few months ago. I don't at all mean to minimize your aggravations with this.  We just have to wait this out. 😕

 

 

 

 

 

[thelegend]

On 10/7/2019 at 8:29 AM, Cocopuffz17 said:

 

Yes you will! Slowly but surely. I remember feeling so down and out that I thought there was no way it would get better. It does, I know it is really really tough to imagine. But it does happen. You got this! Everyday that passes is one day closer to being healed! 

 

Thanks Coco, I really hope I start seeing some improvements. At least you are totally off and seeing improvements I am struggling this bad trying to get back ON!?!

On 10/7/2019 at 12:28 PM, Guilietta said:

 

It is really tiring and we wonder when on earth we will live free from this.  I believe I will get better. I am grateful I am not in a much worse situation than the one I was in a few months ago. I don't at all mean to minimize your aggravations with this.  We just have to wait this out. 😕

 

 

 

 

 

 

Are you saying you are better now than in the past? Every time I think I can start saying that I get hit with symptoms that put me right at the beginning again.

[Giulietta]

5 minutes ago, thelegend said:

Are you saying you are better now than in the past?

 

I am absolutely better - but not recovered and still tapering.

[thelegend]

I may have made a big mistake! Today I was taking my Zoloft as scheduled, out it in my mouth and went to take a swig of milk (from the carton...I know...bad manners). I REALLY don’t think I swallowed and I think the pill fell into the carton, so I decided to just take another one. Well I could have my family drinking milk laced with Zoloft, so I poured it into the sink. I never noticed the Zoloft pill come out, though it is very possible I just missed seeing it come out as the milk went down the sink. Now I am freaking out though that I doubled dosed! How bad would it be if I did? Would it further destabilize and set me back weeks or even months? Any advice would be very welcome!

[RachelSusan]

Hello Legend,

 

First off, calm breathing and whatever you can do to self regulate yourself. And no diet Mountain Dew for you my friend, none. 

 

I have had problems in the past where I wasn't sure if I took a pill or if I doubled dosed.  It's a situation that we have all faced once in a while.  In spite of my fears I have never suffered.  Once I felt a little more  amped up that day but nothing more.  Was feeling amped a sign that I double doses or missed it?  I don't know. Maybe the amped feeling was because I was so fearful? Again I don't know. You will be alright.

[composter]

Hi Legend,

 

Read through your thread just now. I’m glad you are seeing that your baseline has been improving despite having waves. This is key for boosting your morale and knowing that you are on the road to stabilizing. I, too, went through full reinstatement and the unknowns of stabilizing. For me it took a good 6 months after reinstatement to feel much more normal and where most of my symptoms subsided. I then waited another 2 months for a total of 8 months before starting my taper.

 

Patience is key, as well as good nutrition (eat plenty of whole fruits and vegetables, cut back on processed and sugary foods), and a toolkit of self-soothing activities. My toolkit included things like daily sun exposure, self-administered foot massages, and spending time with plants either gardening or on a neighborhood walk. The natural world is immensely healing. It also helped to write notes on paper that I posted in my bedroom wall with mantras and suggestions to myself of what to do when I was in a wave. Each wave felt exactly like acute withdrawal, but they always passed, and once they did, there were improvements. This is simply just the mysterious pattern of healing that we all experience. 

 

To echo some advice I’ve heard and read about stabilization: You will know when you have stabilized. If you are still wondering if you have stabilized enough, you are not yet stable. You will know. And it can very likely take between 6-12 months. Be patient.

 

How are you doing after the possible double-dose? I wouldn’t worry too much about it, one day is not going to throw you off too much. Hope you are well.

[composter]

Legend, here is a set of guidelines I wrote to help another member who is trying to stabilize after a reinstatement:

 

On 9/21/2019 at 11:44 PM, composter said:

In case you're wondering, here's how I made my determination that I was stable and could start my taper:

 

1) Symptoms were at a minimum for at least a month. I no longer obsessed about every symptom or felt the need to make a note in my Glenmullen chart. My WDnormal is about 95% of my healthy, non-drug normal tbh.

2) I had passed the 6 month mark of reinstatement. It was more like 8 months for me. 

3) About 3 months had passed since my last rough wave. Waves last 1-2 weeks for me.

4) I was in a stable and supportive place life-wise and had taken steps to support my neuro health with therapy, supplements addressing deficiencies, long walks, and good talks with family. 

 

Sharing in case any of those criteria resonate with you.

[RachelSusan]

Hi Legend,

 

It's been very quite on your end.  I hope this is a sign that you are feeling just a little bit better.

 

RS

[thelegend]

@composter you don’t know how helpful it is to hear from people who have gone through this and come out the other side, thank you so much for your comments!! @RachelSusan I would say that overall my baseline has improved a small bit, I no longer have the uncontrollable urge to come here and dump my issues on you and everyone else, which probably points to improvements. Some times I feel like it is no question I am much better, but then I get slammed with symptoms again that make me doubt any progress has taken place.

[composter]

Wonderful, Legend. So glad that my words could be of help and comfort. You are truly not alone in this. I have been quite open about my withdrawal experience among circles like within my church and my friends, and I have met two people IRL who went through the same exact thing. It can be a very lonely and invisible thing to experience, but take heart, you are not alone, and you will stabilize. 

 

And yes, many times in the process of stabilizing, I found it a healthy choice to step away from this forum for months/weeks at a time. Do whatever you need to do to feel strong and on a good road. Quality time with family helped a lot, too.

[Lynnardgirl]

I know exactly how you feel! I have been trying to stabilize for over 8 months! 

This week has been awful, after work came home and just cried and cried!

Soon we all will be healed! God bless you

[thelegend]

I thought I was finally starting to get better but this week my mornings have been simply horrific again all symptoms raging, including burning arms which I thought were long gone. I do think my nights are getting better earlier, seems like it used to be 9-10PM when I would start feeling better, now it is usually 5-7PM. Man though, those mornings, I am not sure how much longer I can take it! Am I still on the right track @RachelSusan and @brassmonkey? Is there hope for me stabilizing after 6 months now of trying?

On 10/22/2019 at 6:12 PM, Lynnardgirl said:

I know exactly how you feel! I have been trying to stabilize for over 8 months! 

This week has been awful, after work came home and just cried and cried!

Soon we all will be healed! God bless you

so sorry you are still trying to stabilize. I will be 6 months at the end of the month and still struggling this week as bad as ever.

[Tom37]

At 6 months out I was still getting big horrible waves and now at 11 months those big waves have gone and while I’m still not yet fully stable and where I want to be I’m significantly better than those first 6 months and any waves I do get are minor compared to earlier on. Try not to put a time frame on it as we are all different but as you have had better periods I would say your on the right track. 

 

Dont worry about symptoms returning as I still get the odd old one coming back but they are far less intense. It’s all waves and windows.

[thelegend]

53 minutes ago, Tom37 said:

At 6 months out I was still getting big horrible waves and now at 11 months those big waves have gone and while I’m still not yet fully stable and where I want to be I’m significantly better than those first 6 months and any waves I do get are minor compared to earlier on. Try not to put a time frame on it as we are all different but as you have had better periods I would say your on the right track. 

 

Dont worry about symptoms returning as I still get the odd old one coming back but they are far less intense. It’s all waves and windows.

Thanks Tom, it is good to know that it really can still get better after all this time, feeling kind of hopeless today.

[Giulietta]

Hi there

 

Sorry a wave has come back - just when you think you are done with the worst of them - we learn we are not. 😢  

 

Tom made some great comments - you (and I) may not want to put a time frame on this. Even though we are all different - I think the time frame may make us more apprehensive about this?  If something happens - and when it does - I'll know it is about waves and windows.  Still - it's hard to work through and frustrating as heck.

 

2 hours ago, Tom37 said:

Try not to put a time frame on it as we are all different but as you have had better periods I would say your on the right track. 

 

Dont worry about symptoms returning as I still get the odd old one coming back but they are far less intense. It’s all waves and windows.

 

You will get through this.

 

 

 

[Lynnardgirl]

I guess I’m just scared because most people stabilize by at least 12 months and I don’t feel like I will!

this hell ever end?.. Afraid I’m in tolerance, and someone said you can go into tolerance if hold to

long! I do have windows so I thought if you are getting good windows you can’t be in tolerance??

Im just scared

[RachelSusan]

He Legend,

 

Sorry to hear you are in the thick of it again.  As I mentioned before, this is like a roller coaster. Ups and downs.  What you have to ask yourself is are you having some good days in between the bad days?  It seems to me that you are having some good days, at least that's what I am gathering from what I am reading.  I started to heal at three months.  The important word here is started.  I too had good and bad days during that process. I still have burning skin even though it has been over two years for me.  It's a heck of a lot better than it was but for me that seems to be the last to go. Perhaps you are similar and it might be the last to go for you? As for mornings, they are really rough. I hated mornings, but it does get better.  It is indeed a brutal process but I think you are on the right track.

 

As always, I suggest you continue to stay away from anything with caffeine. Coffee, chocolate, energy drinks, sodas, etc.  Continue to exercise but keep it light.

 

Hang in there my friend.  You are going through a very difficult process but from what I read here it does sound to me like you are improving.

[insistpersistresist]

I used to have really bad morning anxiety too and it also felt that my cortisol was out of whack. I wanted to suggest trying to keep your blood sugar steady throughout the day by eating good fats and proteins at meals along with avoiding sugary, starchy processed foods. The blood sugar highs and lows cause adrenaline to be released therefore amping up our feeling of anxiety. I myself am a fan of eating avocados and nut butters to get my fill of fats. A fish oil supplement helps overall inflammation too as well as adding fat. Magnesium glycinate is calming to the body and a good multi is important. May more windows be right around the corner for you!

[thelegend]

I can’t keep doing this, waking to this anxiety hell every morning. It just has to start getting better but after 2 years of this I really have no hope.

[thelegend]

@RachelSusan - thank you so much for you comments. It has just gotten so hard again. Like no improvement at all has happened over the last 6 months. Mornings are impossible!

22 hours ago, insistpersistresist said:

I used to have really bad morning anxiety too and it also felt that my cortisol was out of whack. I wanted to suggest trying to keep your blood sugar steady throughout the day by eating good fats and proteins at meals along with avoiding sugary, starchy processed foods. The blood sugar highs and lows cause adrenaline to be released therefore amping up our feeling of anxiety. I myself am a fan of eating avocados and nut butters to get my fill of fats. A fish oil supplement helps overall inflammation too as well as adding fat. Magnesium glycinate is calming to the body and a good multi is important. May more windows be right around the corner for you!

How long did those mornings last? Are they better now? Thanks for all the good info on diet and such.

[thelegend]

Woke at 3 AM today because our smoke detector was out of battery and beeping. Had ZERO anxiety at this time, felt perfectly normal. Changed the battery and went back to sleep. Woke again at 5:45AM and anxiety was so strong felt like my whole body was burning. How could such a change happen so suddenly?

[thelegend]

I got much better later in the day at about 5pm. This morning is absolutely horrific again...I hate this!

[Giulietta]

Hello legend

 

Quick note and welcome to insist...

 

On 10/28/2019 at 10:52 AM, insistpersistresist said:

I used to have really bad morning anxiety too and it also felt that my cortisol was out of whack. I wanted to suggest trying to keep your blood sugar steady throughout the day

 

Maintain an even blood sugar helps. While I don't measurre my blood glucose - I find a healthy snackin the afternoon sometimes helps witht his. I may be very hungry on these afternoons and consume a meal's worth of food!!! (we're talking 500-600 calories). Things like this: yogurt with flax seed and berris and berries, whole grain crackers (triscuits - with hint of salt). Cheese. Almonds. Um, whatever I can find is healthy. Look at the FDA food list for more ideas. Oh, banana. Banas and crackers need protein tno balance. Bananas are high in carbs. Oh, peanut butter on a slice of whole grain brerad. 

 

On 10/29/2019 at 9:22 AM, thelegend said:

I can’t keep doing this, waking to this anxiety hell every morning. It just has to start getting better but after 2 years of this I really have no hope.

 

Sometimes it is what it is. It stinks. I've been at this for more than a year Cortisol spikes are something that were not so prevalent earlier in WD by the way (like palpitations). They haave replaced more prevalent symptoms.

 

Things that have helped me with sleep andd cortisol spikes: a weighted blanket and a black out eye mask.  For the 3 hours before bed time - I try to have positive thoughts only. Your brain remembers what ou think the previous 3 hours.

 

Hang in there.

 

It's not always easy to have hope - but look at therecord of improvement you've had.

 

[thelegend]

@Guilietta, thanks I have seen improvements, but why am have the mornings gotten SO bad again. It truly is almost unbearable. Hopefully I have a good night again, but then I start dreading going to sleep cause I know what is waiting for me on the other side.