Fightinghard: overcoming

[Rosetta]

Hi. Sorry that I never answered your post on my thread.  I hope you are doing ok today.  It is great to see that your condition is improving!  Looking forward to activities! Yea!  
 

Yes, going out and doing things will make a difference in the long term, absolutely.  You may “over-do-it” and feel pretty bad that evening or the next day (and you may not, depending on what your brain is doing at the time.). However, staying at home is not always a good thing especially if you do that too much.  Missing out on your kids’ activities, not making those memories with them, being sad and inactive, both physically and mentally, and being alone — that can foster depression in anyone.  
 

I pushed myself too much, I’m sure, but my daughter remembers me being there.  I remember some of those times, too.  I’m still struggling with becoming overwhelmed when I’m out.  It happens less often than before, but I rarely see it coming, and I can’t prepare for it very well.  It’s a flash anger kind of thing, and it dissipates much more quickly than before.   So, I just go as often as I can, and I rarely regret it.

 

Maybe you are re-building pathways in your brain by going out, maybe you are simply improving more quickly than you did before, or maybe it’s a little of both.  Whatever is happening, I’m very happy for you!

 

Rosetta

[Fightinghard]

Quick update-  I’ve been having decent days.  Windows I guess. Not totally symptom free but much less intense and at times not many symptoms.  Sleep is still erratic and it seems to be dependent on activity.  The busier I am the harder sleep is. But sitting around doing nothing but think about this seems to make things worse. I tend to post when in a wave and today has been that. I still get out of the house and work with phone calls and e-mails.  I walk every day. My wave today is with stimulation. Too much talking with people can get my anxiety or agitation going. It’s weird because talking on the phone had been much better but talking in person is harder. Yesterday I was pretty good both ways. 
 

signs I’m improving:  yesterday I listened to a podcast because i wanted to.  I was driving to work and decided to listen.  I want to call people and I want to do things more now. The other day Iwas joking and leading a conversation with my friend. It felt normal. Walking is easier and easier and I look forward to it.   People tell me ‘you sound better’.  I look forward to work projects more at times. I sweat now.  The hair on my legs is growing back. My appetite seems better more often.  My restlessness is so much less and hardly at all. Head pressure is less frequent.  The list goes on.  I remember walking around my block and feeling like I need to run home.  Now I just go and go for an hour.  Driving was just as hard. Now I drive miles and hours some days. Generally sensitivity is less with sounds and light and movement. My startle reflex is better. 
 

the waves are still hard and today I’m having one after a tough night sleep. I woke up with anxiety and agitation.   I’ll try to be calmer tonight before bed. I’ve wanted to read more leisurely things lately which is nice. When I feel decent I tend to overdo it and then sleep is rough and a wave comes in. This site has been a great support.  But I have to say when I’m not here visiting I do better.  So I’ll try to distract away from here. My phone usage has down a bunch this week.  I mean down to 2-3 hours several days and mind you that includes work use. That’s a far cry from 6-8 hours and even more early on. And that was all WD use for the most part. It seems with each passing wave I have improvements.   As my friends have said, don’t hold back. Live life.  I’m doing that but trying to be smart with my cns.  My therapist (horrible WD from benzos and ADs) tells me I’m getting closer and closer and I’m doing so much better. The hardest Times for me is when I’m in a wave and I don’t know what to do to distract.  Balancing activity and the cns. I’m really tempted to take my wife to dinner tonight even though I’m feeling bad.  Agitation and mild ‘Alien sensations’ as I call them.  I guess I want to live life and create new neural pathways and wake up the old.  Sitting here won’t do that. 
 

i hope others are seeing improvements in their journey.  I look forward to the day I post about being past all this.  Honestly I’m probably 50-60% better than my worst and sometimes much more. Maybe 80% during better days. 

 

[mstimc]

Fighting

Go for dinner, IMO!  Its a small thing and even if you don't enjoy it, you gave it a shot. Only you know what you can handle, but pushing the limits every now and then doesn't hurt.  And you may enjoy it.  Last we kk I was struggling a bit, (just all the work on the house and the expenses) and my wife wanted to go to dinner.  We went to a quiet local place and it didn't take too long for me to release my anxiety and enjoy the meal.  

[Fightinghard]

I’ll find a small simple place to go. Generally, at this point in my recovery, I’m finding I can do more than I realize.    Last weekend I went to the pool and a graduation party.  I did ok both days. Do agree with the idea that we need to do as many normal things as we can to help the brain heal?  New neural pathways need to be paved?  It’s interesting that the people I’ve talked to that are healed are say that as soon as you can live as normal as you can even with the symptoms.  That’s when progress happens.  Was that your experience?  I’m not saying run a marathon but normal life things. 

[mstimc]

10 minutes ago, Fightinghard said:

Was that your experience?  I

I worked while I was in WD and recovery, and I got a few high-profile assignments during that time.  Oddly enough, it was kind of therapeutic for me  because it forced me to focus on something besides my anxious thinking. I even got an exceptional performance bonus one year!

[Ninabird]

@Fightinghard

I smiled so big while reading this! May you have many more windows and squeeze every bit of joy out of this life, good or not so good  🙂I agree w your friends to live and not sit. 
 

Big victorious hugs to you!

[Fightinghard]

@Rosetta Thanks Rosetta-  sorry I didn’t respond sooner. Somehow I missed your message.  I appreciate your response and thoughts.  Yeah I continue to be active as much as I can.  It’sa hard balance.  Did you push through waves?  

 

 Last night I slept probably 6-7 hours straight!  And it was good sleep!   Woke up ‘calm’ and ok.  Of course the cortisol increased or whatever and things have ramped up into the morning symptoms.  What’s so crazy is how differently I feel the past few days versus the previous few weeks.  It’s like every week this changes. Some positives occur but also some increased intensity sneaks in. And actually the symptoms change.   Yesterday I fought with my wife.  Usually that really ramps me up. Very revved up and I can’t let it go. Yesterday I was fine within 10 minutes. Fine meaning my usual symptoms.   Also my mind is calmer?  But my body is lagging behind.  I can’t really explain it. It’s like I’m less frantic.   I am doing things that I couldn’t without much thought. I just do it most of the time. Driving is much easier.  Things seem to be slowly improving.   The hard part is the intensity has ramped up with symptoms like agitation.  I guess we go one day at a time and manage them as we go. 

[Phoenixmama]

🌞

 

[Fightinghard]

So I think I’m slowly improving.  Functionally I’d estimate on 75% there.  I still struggle with stimulation and how much to do.  But the days of being home all day on my computer or phone are infrequent these.   My overall phone Time Is much less most days.  I go to my office most days for several hours.  I lightly socialize with friends and family.  A few dinners out. Trips to the pool.  Graduation parties, parades and last night a festival for 90 minutes. I walk everyday now for at an hour and I recently started to bike as well. I do both very leisurely.  My sleep is still very erratic but I do get nights with longer stretches close to 7 hours.  
 

I’m still dealing with anxiety and agitation.  I get moments of calm but generally I’m not.  But it is less than it was. My sensitivity to sound and light and touch is much better. I really think once my stimulation issues get better I’ll be over the hump.  Today I walked and hour, rode my bike with my wife for an hour so alot of talking.  Did light chores and talked to my neighbors for awhile.  From the outside very normal days.  Considering a year ago I became housebound I’m doing much better even when it’s hard. My biggest struggle remains how much is too much?  At this point, I really don’t force anything like I did.  I usually ‘naturally’ go places or talk to people now but I have symptoms going.  My time alone is the worst for me.  I don’t do well with with certain stresses.  I do get moments of depression/hopelessness but nothing like it was.  I don’t really get restless anymore and my evenings are generally better than mornings. As I’m sitting here writing this I’m reflecting on 5 weeks ago and my daughter tumbling practice.  I decided to meet my wife there to watch. It was hard. Now ib don’t hesitate to go with my wife. It varies in how hard it is but usually now I can sit and talk and watch with symptoms.  Almost naturally.  The people that I talk to that are healed all tell me that things will melt away slowly.  I think that’s what I’m seeing.  They say you went really Realize it.   I know objectively I’m much better but it’s still very challenging.  I have had windows with almost no symptoms and when I bike in the mornings I feel great.  Again for me it’s trying to balance my cns and life.  I know we need to be gentle but I wonder at times what does that mean?  I guess I know not to run a marathon or go to a concert for hours but I also have found I can do so much more than I realize.  And I’m most cases the impact is not terrible. Yes I get waves but usually they aren’t too bad.  I also find with each new activity I tend to improve soon after.  I’ve really been trying to be more social.  So I talk and see people as much as I can.  Today i talked to my neighbor for well over an hour.  For most of it, I was great.  I couldn’t do that months ago.  So I’ll probably keep doing things like I have.  Do what comes to me but force things. We’ll see where I am a month from now. 

[Ariel]

@Fightinghard

Good to read your update! 

I'm happy for you. 

You're doing a great job. 

Healing is happening <3

[Phoenixmama]

🎉 🌞

[Fightinghard]

Well I’m in the midst of a challenging week. My wife left for Vegas yesterday with my middle son and I’m home with my daughter who’s 11 and my oldest son who’s 17. My parents are coming to visit and help.  They arrive today. My daughter had a tough night missing her mom but she did settle down.  It just added to my challenges as I tried to comfort her.  My wife returns next Monday so I hope for this to settle into a routine soon.  My typical symptoms are still in full effect with anxiety, agitation and my tolerance for stimulation.  Depression had been better.  I’m definitely calmer than I was at my worst but I’m still not calm as much as I’d like. I am getting moments of calm and the other night I slept from 9:30-4 and then back to sleep until 8:15!  It was deep, normal sleep.  I’m hopeful I can get in a better sleep pattern soon.  Monday was a nice ‘partial’ window with very low symptoms.   My wife and son leaving has put me in a new situation that I’m sure stresses my cns.  I think once it adjusts I’ll be in a better place. 
 

Yesterday I was outside with my middle son and daughter working on my lawn. It was beautiful here and my kids were playing basketball. Just shooting around. I decided to join them.  Not much thought.  Just did it. Itv was normal in the moment and I was doing things that I had not done in years. Then later that afternoon I was out running a chore and decided to offer to take my daughter to get Starbucks.  I did that and we ended up ‘touring’ my old apartment and a house we almost bought. It was also kind of normal. I guess the best way to  explain this is things are starting to naturally flow at times. I just kind of do them versus feeling forced.   I’m symptomatic but I kind of just go.  Another observation I’m having is with thoughts and Emotions.  I was a big fantasy football guy that would obsessively research before all this.  Last night I was thinking about players and who I liked, etc.  it wasn’t quite free flowing but it was kind of going. But what I noticed was as I thought about things it stirred up my symptoms in a weird way. It was like I was trying to break through something and the more I did it the more I felt symptoms. It didn’t get too bad but it was noticeable.   So between all the emotions and responsibilities I’ve encountered the past few days and then these conscious, enjoyable thoughts I think I’m starting to heal those areas of the brain which In turn ramps up symptoms.  Kind of like I’m stirring up parts of the brain that haven’t worked.  This morning I kind of feel more ‘normal’ but in a bad way. Like the scope of my thoughts and feelings is broader?  My body isn’t liking it with the symptoms-  my legs are weird feeling and my chest is tight.   I’m not sure but it makes me think I need to challenge these things ever so gently each day.   When I first started to drive it was really hard  and I could maybe drive 5 minutes. Now I go driving without thought most days.  I’m sitting here now and in my mind I should go do normal things.  Like I plan things in my mind to do. For example going to pick up my parents at the airport. I’m thinking about it sens normal but my body reacts to it.  Maybe I’m less fearful most of the time which allows me to think clearer about it but my body hasn’t gotten that message yet?  So symptoms persist.  
 

there’s no doubt that there have been physiological changes with the drugs and WD. It seems those changes heal and then the brain needs to readjust to how to function normally as it had to protect itself while it was healing.  I’ll keep slowly doing things, living life as much as I can.  
 

I’m going to go walk in a few minutes. Probably go for an hour.  Recently I’ve been biking as well for 30 minutes but very slowly.  The fresh air and moving off the body really seems to help.  
 

I didn’t expect to update this soon. But with the recent challenges and changes I thought I’d share and see if others could relate 

[mstimc]

6 hours ago, Fightinghard said:

there’s no doubt that there have been physiological changes with the drugs and WD. It seems those changes heal and then the brain needs to readjust to how to function normally as it had to protect itself while it was healing.  I’ll keep slowly doing things, living life as much as I can.  

 

I think you hit it on the head, Fighting.  WD can cause an uproar in our bodily systems and our thinking patterns, but neither is permanent.  The more we practice "normal" activities, the easier it gets. What was revelatory for me was when I started having regular windows and I found myself wondering if it was okay to feel okay. Eventually I accepted that the answer is "Yes" and anxiety isn't something we need to hang onto. That transition from anxious thinking being our default to peace and acceptance is a huge step.  You're going so well!

 

[Fightinghard]

Well I’m 2 years out from my lexapro WD.  2 years since I stopped everything.  I know objectively I’m better. I see the subtle changes and I see the improvements in activity. I’m calmer than I’ve been recently and I have short windows of feeling decent. The improvements are subtle but they are there. For example I can easily sit with my family and eat dinner or any meal these days. That wasn’t possible months ago.  I walk every day for at least an hour.  I do many things everyday.  I’ve been to a cheer concert and out to the mall this past weekend. Plus the pool.  I’m not symptoms free but things are more manageable at times.  I’m still very waves and windows for sure.  But I continue to just live life as best I can. Trying to be the best dad I can be while balancing the stimulation of life. Today I went to the dentist and I joked with the staff. My sense of humor pokes through.  So I’m hopeful I’ll see big improvements the next few months and maybe be that much closer to having this in my past.  All of my mentors tell me the same thing;  live in spite of your symptoms.   As one person says, ‘retrain your brain’. I can say undoubtedly that each time I do something it gets easier and easier.   Sure there may be a price to pay with increased symptoms but usually that is short lived. And inevitably on the back end I’m better.  Last year at this time I really took a step backwards.  I couldn’t tolerate much of anything. I was housebound and couldn’t drive, etc. walking was near impossible.  Prior to my setback I was walking hours a day and driving hours a day. Anyway here I am today.  Going to the dentist, Cheer live concerts and out to dinner. The pool and whatever else I do. It’s all a little easier than it was.  So I’ll slowly introduce things and challenge myself and hope I continue to improve knowing waves are part of this and at times i’ll be fighting that.  I really don’t force myself much these days. Just do this as they come.   But again to compare to where I was I know I’m healing and it’sa matter of time before symptoms melt away even more.   I hope my 3 year anniversary is better and I’m past most of this.  Healing to you all!  

[Phoenixmama]

@Fightinghard💜🌞

[Alice1]

@Fightinghard

This is great news . I'll bet you'll be 90% in 18 more months , but that's where the real challenge lays . Don't get cocky and do things like WD never existed (my problem) . You're going to have to look over your shoulder for the next decade. JMO .  

[Fightinghard]

@Alice1 thanks for the encouragement.  Honestly I’ve been working really hard on my anxiety and thoughts.  AndIt helps a lot.  Which makes sense.  We’re supposed to be gentle to our cns.  Well what better way then to reduce your anxiety?  I’ve always had a level of social anxiety.  So it stands to reason every time I socialize my symptoms spike.  The more I do it though the less it is.   I have several healed friends that all tell me to not hold back much. Do things in spite of how you feel.  Obviously be careful with meds and such but otherwise dip your toes in and see how you do.  I’ve learned to use vitamin C when this gets revved up.  I drink a strawberry banana orange juice smoothie daily.  If I’m really bad and need to take the edge off I take 250mg. It’s good stuff.  Anyway, the Claire Weeks approach has been huge plus the work on my thoughts.  I’ll be careful but live life as best I can.  Thanks!  

[Fightinghard]

Well I’m in a wave. It’s hard one. About 2 weeks ago I went on vacation. We drove 12 hours each way. I drove 4 hits on the way down and 6 on the way back.  During my trip to the beach I was very busy. Swimming at the pool, ocean, dinner with my family, walls and bike rides.  I felt ‘proudZ’ that I could do those things. Mind you I had some rough days and none of them were easy but I did have a few better days while I Was there.  When I came home I had one of my best days yet.  Socializing and pretty active day.   This was all though work at different offices. I don’t work 8 hour days but I do have many phone calls and zoom meeting and computer time.  Anyway one thing I noticed was symptoms were changing.  I was more restless in my limbs than I had been.  I could sit and talk but I felt it.  I realized that I had been taking more melatonin than usual due to a mistake in measurement over vacation.  My normal dose is probably about .23-.24mg.  I measure a capsule and remove the powder to get there from the.3 dose it comes in. Well if my math is correct I was taking about .25-.26mg at most so .02mg more melatonin. When I realized the issue I then reduced myself back to within 3% of where I was.  Now I can’t say this wave is totally from the melatonin change. When I look at those numbers and how small they are I find it crazy to think it could cause a problem. But I can say after my attempt to stop it a year ago and how far I went backwards I’m very aware of the changes. Now the good thing is melatonin doesn’t ‘damages’ things like a drug might.  I probably just throughs off the balance of things like maybe caffeine or alcohol.  Considering it’s naturally occurring I can’t see any problem with long term consequences.  
 

i can’t fully describe this wave.  I know I’m still in a better place than I was months ago. 2 nights ago I decided to play basketball in my driveway for 10 minutes.  I’ve been able to feel better when I socialize with my wife and kids. If I flirt with my wife I actually feel better.  Maybe the pleasure side of things is improving and I can feel it some.  Mornings are harder.  I tend to be agitated more but it feels so different than in the past.  It’s more tension in my chest and head versus feeling like I need to run and discomfort that way. 
 

some positives I’m noticing even with this wave is my emotional resilience is better.  I can manage conflict better and without as much negative backlash.  I’ve mentioned these before but I can sweat again and the hair in my legs is growing  back.  I rarely shy away from doing things although this wave has made that harder.  Yesterday I walked for 40 minutes with my wife talking the whole way, installed a ceiling  fan, went to my daughters cheer practice, grocery store, worked on my computer for an hour and finished a project;  I felt pretty good afterwards,  cooked dinner and then spent time with my wife talking and watching our kids.   I watched a few minutes of tv and read a magazine for 5 minutes.  I go in and out of symptoms.  They’re hard and front and center and then they are gone or I don’t noticed them. I’m ll be joking with my wife, engaged in the topic we’re discussing. I’m on my phone way less most days. Yesterday was hard but I was only in it for 3 hours.   Saturday I walked and I biked ride for a total of 2 hours.  In the moment I B do these things not to prove a point but because I want to.  So I try. I’m still trying to navigate the be kind to your cns and don’t overstimulate.  My instincts tell me if you do’ normal’ things within life at a moderate pace realative to your tolerance you’ll be ok. I road my bike for an hour because I kind of enjoyed it.  It felt ok in the moment. Later that day I went to the pool to sit.  I kind of fell asleep sitting there. Nothing toxic really. So this wave could be from all the activity or out could be the melatonin.  Or maybe both.  But I’m not sure how to back off since being busy does seem to be better for me than sitting back on my phone waiting for things to feel better. I tend to read too much about WDn and I think that only makes it harder. Sure a little bit of checking in with things on the forums for me Is ok. But obsessing doesn’t help. I keep going back to what so many have told me about what helped them heal. And so many say just going out and living life as best you can with time helped then the most.  Some used supplements with success to help but the healing was with doing.  My last thought is I think doing things that make you feel good is important. Even if it doesn’t in the moment.  Socialize, light exercises, get outside, challenge yourself with things gently. I read small amounts each day.  Trying to get back to where I was.

 

 Today I think I’m getting the effects of busy day yesterday while in this wave. I’m very unmotivated and feel stuck. Maybe it’s the fear of the stimulation that gets me.  Who knows.  But I have to get up and move some. I’ll go walk for a bit and see if that helps.  Then I’ll see where the day leads.  Recently I’ve not felt as bad once I get going. 
 

Not the update I hoped for but I guess windows and waves.  

[mstimc]

6 hours ago, Fightinghard said:

I go in and out of symptoms.  They’re hard and front and center and then they are gone or I don’t noticed them. I’m ll be joking with my wife, engaged in the topic we’re discussing. I’m on my phone way less most days. Yesterday was hard but I was only in it for 3 hours.

Fighting, this is a sure sign you are recovering, albeit having to deal with the unpredictability of the windows and waves rollercoaster.   The anxious thoughts are feelings aren't constant and you're doing a great job of keeping them in perspective. I think you've seen some of my previous posts comparing anxiety and OCD to any other chronic condition like diabetes or allergies.  At certain times and under certain conditions, the symptoms will flair up, but just as we might take a Zyrtec for allergies, applying coping tools and keeping things in perspective gets us through waves.  

 

I can see how writing about your windows and waves is really helping you deal with recovery and with keeping things in perspective.  Its so much better than trying to "tough it out" or freaking out over a wave.  Keep it coming!

[Phoenixmama]

@Fightinghard 🌞

[Fightinghard]

It’s been a little bit since I’ve updated so I thought I should.  I’m definitely in the windows and waves pattern albeit I don’t get those 100% clear windows but I do get better days. Since I’ve last updated, I’ve been to friends party, a college football game with 100k people and a lot of walking, dinners with my family and I’ve handed much more work responsibility lately. I’m doing things more naturally these days but with symptoms.   At times I think I’m pretty close to recovered and then the waves hit. But I’m finding the waves seem to correspond to my increase in activity.  So after I really busy days with this outside my comfort zone I tend to fall into a wave.  But the waves generally aren’t as intense as they were.  I have many days and moments where I’m not thinking of WD or my symptoms as much.  My main symptoms cycle between agitation/anxiety, head pressure and moments where I feel I want to isolate. Like everything is overwhelming.  I feel sick at times; kind of nauseous.  My sleep is still a struggle with frequent wake ups lately where I have to pee. I’m sure I’m missing things.  The restlessness, Aka, feeling like I need to run, ‘high energy’ feeling seem to all be better and not nearly is often.  I’m noticing liking things like I can just sit and eat dinner or a meal and I’m not thinking about it. Watching tv, reading and socializing has been better.  I guess the best way to describe it is the volume on everything is going down where at times I don’t notice it much.  For me, the things that seem to help the most is staying active and doing things even when it’s hard.  Everyday I go out and do things.  I get up, make my bed, make breakfast, hello my kids off to school, walk 5 miles with my wife and talk (6 months ago I couldn’t do this after my set back), then I work which entails social interaction, phone calls, etc.  evenings are taking my kids to there activities or a trip to the store, making dinner.  Recently I’ve been watching tv or reading. I’m an avid fantasy football player and that seems to be coming back. I want to do it more and more. I worked daily on my anxiety.  Working hard on my thought patterns. I have no doubt this has been helpful.  The more I can calm my mind and anxiety the less my cns reacts with fight or flight responses. I’m ‘floating’ and surrendering to my symptoms using the Claire Weeks approach.  I do believe this is also helping me work through this recovery. Diet needs improvements.  I’ve been craving sugar more (which to be honest I think May be good that I’m craving) so I’m having to be careful that I don’t overdo it. Plus I do think I feel worse with too much sugar. 
 

The last thing that I think is a sign of healing is I frankly don’t read as much or look as much at things regarding WD.  I message less.  I just tend to be more involved with life. I’m also less fearful of coming here. I can’t explain it. I don’t want to visit this site like I did. I’m not searching up every success story like I Did.  Much less.  Even writing this, I’m more confident, calmer in many ways. I know I’ve written this before in a sense but now ours even different than it was before. So that’s my update. I can say things do get better.  It’s slow and hard to see at times but It does.  When I think that last week one night I went to a friends party for 4 hours, the next night I went to a football game and then a family bbq 2 days later that’sa huge change.  Continued healing for everyone as you push through this journey! 

[mstimc]

Thanks for the update, Fighting.  It sounds like you're making slow but steady progress.  I empathize with going to events with crowds.  A few weeks ago, we went to see the Gipsy Kings at Hollywood Bowl.  It was group thing with friends I've had since college.  When we got there, I found myself checking my watch to see how much time we had before we could leave, but about halfway through the concert, I told myself it was okay to just enjoy the music and the happiness around me.  It turned what could have been a stressful and anxiety-provoking night into something I really enjoyed.  Sometimes we need to remind ourselves its okay to feel okay. 

[Fightinghard]

Time for an update. It’s been about a month since I last did.  Overall I’ve been having better days. Functionally I continue to improve with my ability to do things and get out. I’m walking 5 miles most days and recently added light jogging for a few minutes and light weights.  I’ve been drinking about a 1/4 cup of coffee in the mornings and some chocolate during the day. I try to eat healthy and avoid too much sugar.  Many things have become ‘natural’ but with symptoms. Driving, shopping and so many other things I just do now.   I’m noticing I’m less focused on how I feel more and more. I’m definitely in a windows and waves pattern and I still think the majority of my waves occur when I overdo it. I’ve not had a day where I don’t go out and socialize or do something in a long time.  I’m noticing subtle improvements in my emotions and thoughts.  Many days I think normally. Meaning I think about doing things in the future and things I want to do.  I’ve been reading a novel and I’m looking forward to it most nights. 
 

when I overdo it, the waves come. They are still hard but much better than a year ago. I’m starting to realize that they will pass so they don’t hold me back much. Yesterday I had a very busy day by anyone’s measure with 4 hours of driving, work, hours of calls, busy restaurant for 45 minutes and then off to a HS football game. Oh and I started my day at 7AM with my 5 mile walk talking to my wife for the entire hour. Understandably, today was a step back. But I still took my son bowling and went to the grocery store.    I believe these waves are truly a sign of healing. It seems with each new functional improvement I have I follow it with a wave.  But when the wave settles, I’m in a new better baseline.  This has been my experience.

 

I continue to work hard on my anxiety. It’s daily recognition and effort.  I know it is helping me.  Supplements are minimal with vitamin C to help with the high energy symptoms like agitation and anxiety.  I find it takes the edge off of them.  I drink mineral water as well for the lithium and magnesium in trace amounts. I do feel the difference when I don’t drink it. 

 

symptoms are about the same although less intense.  It’s like the same experience keeps repeating just less intense each time. I still have anxiety, sensitivities (light, sound, touch are all much better) to stimulation, agitating, burning chest, muscle tension and I’m sure others. Temperature issues, Mild fear. Legs feel weird.  Sleep is all over but most nights I sleep 5-7 hours broken. Occasionally I get 7 straight. I also get a prostate issue where I have to pee and can’t hold it. And at night I pee every few hours some nights.  It comes and goes. Really my biggest issues are the agitation and stimulation when it flares up. I’m not sure if I still have aka ( I don’t pace or feel like I need to move like I did) or it could be just a lesser version of Eney I had. 
 

I’m at an interesting phase in this recovery. Much more confident most of the time. Emotionally more stable much of the time. I’m starting to enjoy myself more and more. Hobbies are improving especially in the windows. At times my thoughts feel very normal and content but my body hasn’t caught up. I plan on continuing with my same approach. Work on anxiety, stay active, socialize, do enjoyable things (fake it until you make it) , eat healthy and exercise.  The other day I really thought I was going to write my success story soon. Today I’m not sure about that but I do know I’m doing much better than I was a year ago.  Until next update, continued healing for all. Look for the subtle changes that show healing. They are there. 
 

 

[Phoenixmama]

❤️☀️

[Alice1]

On 10/8/2022 at 8:25 PM, Fightinghard said:

when I overdo it, the waves come

 

How are you over doing things ?  Too much exercise, sugar , activities ? 

 

This is my down fall . I always get better and jump right into life and plummet again hard . It will take me weeks to get feeling a little better again, then I go backwards because I live too much .    

Do you get burning skin ? 

[Fightinghard]

@Alice1  I overdo things usually with activity.  I’m not sure I get too much negative from diet. I don’t overdo it with sugar and this but I also don’t each very strict. Exercise generally is walking with some really light weights.  I have jogged a few times here and there. 
 

My theory is we need to push our limits as we go and sometimes it’s a little more than we should. But my experience had generally been I’m usually in a better place when I come out the other side of the wave.  I honestly think the waves are unavoidable.  Obviously if insult or cns with a drug that’s different but I N really have a hard time believing that doing things can damage the cns. I just think it puts it in a place it hasn’t been and it reacts to try to correct and then we get the wave. But I don’t think its a ‘set back’ like we damaged it.  I’m believing firmly in those that I’ve talked to that have recovered where they tell me don’t hold back. You have to retrain the brain. 
 

I’m in a wave right now from stopping my melatonin all together.  I forgot to take it one night and the next night I felt really good. Very calm. So I decided to stay off it. I’m 4 nights in and symptoms have been more intense. But evenings have been better?  I’ve laughed more and enjoyed more things.  Today I’m very calm but I feel like distressed. No agitation.  No movement or restless feeling. Just like distressed or something.  Anyway, I’m hoping this calms down soon.  All I can do is follow those that have recovered and most tell me to go out and force yourself to do things.  Eventually it feels normal again.  I’m getting glimpses of this as I go with windows. 
 

The last thing I’ve been doing is I use vitamin C to help with the high energy can’t calm down feelings.  It really takes the edge off. 
 

 

[Fightinghard]

@Alice1 no burning skin. I get other sensory issues and weird feelings. Burning chest at times. 

[mstimc]

Hi Fighting

Thanks for the updates--keep them coming!  Its great you recognize waves as temporary and as just feelings in response to challenging yourself.  You should be feeling more confident that you can handle waves and other life issues without undue anxiety.   Remember, this is about long-term recovery, not day-to-day feelings.  You may feel some agitation or distress, but that's much better than the nearly constant anticipatory anxiety you were feeling a year ago.  You're well on your way to recovery!

[KenA]

Amazing updates for sure!! Glad to hear that things continue to improve for you!! You are getting there for sure!! 

[Fightinghard]

@KenA @mstimc  it’s an up and down journey for sure!  Last Friday I thought I was getting really close then this week has been hard. Of course you raise the Barr with function so it’s hard to back off.  Family responsibilities and work don’t stop. So you do your best and make through each day.  Today has been hard to say the least. My in-laws are here and my son had a volleyball tournament that I went to with them. B now they want to go to dinner. Hopefully we finish early and I can get home and try to calm myself.  Even though it’s hard I can say that I wasn’t able to do all of this a year ago.  Especially in one day.  I walked 4 miles, light weights, lunch and football with my father in law and then off to volleyball. Now dinner.  That’s busy for anyone. When I was at my sons volleyball tournament my daughter and I were playing with a ball for fun. In those 20 minutes I get so normal. I wanted to play. I can’t explain it other than I just was ready to get out there and play again. I used to be an avid player myself. Months ago I’d play some with my daughter  but it was very forced.  Today was natural with symptoms.  I know that’sa good sign. When things start to feel’natural’ even with symptoms. Thanks again for the encouragement!

[Fightinghard]

Well, this is turned into a pretty intense wave. Last night basically very little sleep. My akathisia has ramped up. Fortunately, it’s not as bad as my first go around. But nonetheless it’s still very difficult. This is a lesson learned. I stopped the melatonin, thinking that I was OK to do so. It wasn’t intentional. But when the opportunity arose, I decided to go for it. I’ve read many stories here and for the most part people have done well stopping melatonin. Or people didn’t realize the waves they had were from stopping melatonin. Regardless, it’s been six days since I’ve taken it and I’m torn whether I should reinstate it, or continue down the path.  I was in a similar scenario in June 2021 when I also stopped the melatonin. That time I reinstated but I went up and down several times during the process. I don’t think that was helpful to my Cause. This time I’m leaning towards hanging on the best I can and waiting to stabilize.  I know several people that have quit melatonin and I’ve had similar experiences. Most of said they stabilized within three weeks or so. I realize we’re all different but I’m hopeful that this wave won’t last. I really have no choice but to continue to do the best I can and stay active. I want to be clear that I do believe in doing things to help you heal. That’s sad I don’t necessarily think that means overdoing it. I believe in incremental tests of your abilities. So I’ll continue to go for my walk head to my office and work several hours as best I can.  Stay active with my kids the best that I can. And just hope that again this subsides in a reasonable amount of time. My recent pattern has been that the evenings have been generally better. Last night was the exception. Yesterday I was extremely busy. I have family in town, and we frankly didn’t slow down.  so that obviously probably didn’t help my current situation. I’m guessing the reduction in Melatonin and the activity together push me into this wave. So while I’m not necessarily warning, anyone to not use melatonin, I am suggesting that you be careful and realize that everyone’s affected differently.  The one positive in the situation is since I stopped the melatonin, I do feel strangely better in my mind. It’s really hard to explain, but I’ve generally been more focused in spite of the agitation and discomfort from the akathisia. Now there’s times it’s very difficult, but it does seem to be generally better.  I’m sure I’ll be updating periodically as I go through this. Continued healing for everyone. 

[KenA]

I found when I was taking Melatonin I had a hard time with cog fog and alertness in the morning. I actually tapered myself off of melatonin, so it was less of a shock, but you should be fine in a few weeks Im sure. I sleep just fine without it now

[Fightinghard]

@KenA thanks Ken. I was only on .25mg so it wasn’t a big jump. But I’m feeling the difference.  Hopefully you’re right and in a few weeks this is calm.  I had one friend quit melatonin and 4 weeks later his akathisia left him.  I’m hoping for a similar outcome. 

[Fightinghard]

This past week has been a real crazy experience.  First the good things.  I had 5 nights in a row of at least 6:30 minutes of sleep and 2 nights with 9.  One night was 7 hours straight and the others when I woke I was back to sleep quickly.  So I’m encouraged by that.  Thursday I had a nice day.  I was very busy with my normal schedule of walking and work.  A lot of driving and socializing. That night I laid on the couch watching tv and before I knew it I was asleep!  That was nice. Falling asleep watching tv has really not been possible. It’s normal feeling for me.   As a whole, this week was better with the sleep but I am getting hit hard with some flares of symptoms.  Agitation, burning chest, just feeling like crap feeling, head pressure.  But the weird thing is I’m starting to have the symptoms but I almost don’t think as much about them.  I guess a better way to say it is I’m thinking and doing more about normal life that’s how I feel. Like I’ll be talking to my wife or son and I bring up ideas of things to do. It’s like my brain is getting back to thinking normally and in spite of the feelings and sensations I focus elsewhere. Even sitting here writing this is like I can’t tell what’s wrong with me.  My brain is feeling weird but yet I don’t notice it much at all unless I focus on it. Even the restless feeling is there but then it’s gone if I think about work or Wendy I’m going to do.  I’m not sure I’m doing this Justice but basically I’m able to focus on other things easier and I’m able to be more involved with life.  I’m also less fearful of the symptoms for the most part.  When they really flare up it’s still very hard but generally I’m not in catastrophe phase. It’s more like a bad headache.   I think because I’ve had better days the intensity of the symptoms seem worse.  When I’m with my family Abe when I think of my family things have a weird normal feel to it.  Last night I sat and watched a movie with my wife.  It just felt normal even though I had symptoms?  
 

i really think what’s happening is my brain is creating new neural pathways with all the activity that I’m doing. So if each time I force my brain to do something it creates a pathway which over time becomes automated.  For example, making my bed or cooking dinner. Those things were really hard. Now, not so much. The constant repetition while symptomatic taught my brain to do things in spite of the feelings and eventually the bad feelings are overcome by the positive actions of doing. To be honest, every day I force myself to complete tasks and also to ‘enjoyable things’.  Playing with my daughter, hugging my wife, listening to music, walking, reading.  Messaging a friend or researching football players for my fantasy team.  It all slowly bevies normal again. Thursday I was driving to a lunch meeting listening to music and singing and smiling.  
 

Last night I hit a wave.  I knew it was coming. My sleep was broken and I had all kinds of weird feelings in my body and limbs. Fear was there.  I’m hoping that today calms down a bit and I’m back to where I was last week.  Last Thursday I packed up my melatonin supplies.  Bottles, scales and all other stuff.  I removed all my books on WD and really anything related to my recent past with this.  Again, trying to create new pathways versus the same old routines.  It was liberating to stop the melatonin.  At this point, I don’t know how much of my change in symptoms is from the stopping of it but I am confident melatonin absolutely impacts the brain chemistry in a way that influence symptoms both good and bad. A buddy of mine that went through drug WD issues and symptoms stopped melatonin and 3 weeks later started to turn a corner after a rocky 3 weeks.  I’m hopeful I may be so lucky. 
 

I’m off to start the day. I’m feeling a little bit like I want to isolate, etc. but I can’t. I need to move forward. 

[Phoenixmama]

☺️ 

[Fightinghard]

I’ve written this before in different ways but it’s probably for me the toughest thing to balance. Activity. This past week, starting Tuesday, I decided to do some very light weight training.  I mean very light weight and for maybe 10-15 minutes with rest in between.  I used to be an avid exerciser.   That first day I had one of my better days. I overall felt ok. I started out feeling high energy/ revved up but that slowly faded into positive feeling. So I did it again, lightly, on Wednesday.  Thursday I went for my walk and made the decision to go to the gym on my way to the office. Now mind you I’m doing these things with symptoms.  I have this strong feeling like I don’t want to do things, fear, I guess low motivation, dread, agitation and others cycle through.  But on Thursday I had this feeling like I wanted to go. The gym for me was more social than for exercise in many ways. I had many friends. So when I went in and joined, it felt weird. No agitation like I expected.  After walking around and talking to old friends, I definitely was getting worked up. Nervous energy. Probably anxiety.  But I left with kind of a euphoric happiness.  It was so nice to see people again. And talk. It’s very loud place with music and very busy. The rest of the day I struggled with low motivation and later agitation.  A burning chest.  My sleep Thursday was harder than usual but I did sleep broken probably 6 or so hours. Yesterday I went back to the gym and same deal. I did stretching and a slow 5 minute walk on a treadmill.  I talked to a few people and it was just weird to be back.  It had a positive vibe to it. From there I went straight to my office for a busy day.  I spent 5-6 hours talking and working on a project with a coworker.  It was hard with anxiety and agitation but I made it through.  Later on I was very ‘sensitive’ like I wanted to isolate.  Many things were too much like TV and talking. I managed to spend time with my family just quietly and calmly.  As usual as the evening went on, I felt a little better so I decided to just lay with my wife and talk. We haven’t been intimate much at all and this may be TMI sex just hasn’t happened in probably 2 years plus. I’ve just not been able to much of the time. But I felt I need to try on some level to get my body going again. So it was nice to just be there with her. Again I’m not feeling normal but I’m ok just being there and talking.  She did have allot to say which is tiring and hard at times when I feel the way I did. We held hands and caressed each other. My wife did begin to touch me intimately and unfortunately, I’m my hypersensitive state, i had premature ejaculation.  So after a very busy few days and an orgasm last night, my sleep was disturbed with higher symptoms.  The one positive is it is not nearly as intense as it once was but still difficult none the less. I feel like I’m in this phase where I feel like I can do things and at times I want to.  Like the gym. I wanted to go to the gym.  It was hard to actually do it and I sat in the parking lot stressed about it but I did it.  so this morning I’m in a wave.  Again it’s still hard but not as hard as it used to be. I can think about other things more often.  Like I can think about the friends from the gym or whatever task I’m doing and I do kind of forget about WD in those moments. Yesterday before I went to the gym I walked with my wife.  I had a decent walk with low symptoms.    Tuesday night I sat there watching basketball because i wanted to see someone play.  I was engrossed in the game.  
 

my last point about seeing old friends at the gym. In those Moments and those conversations I’m feeling pretty good. Kind of normal  just talking and Its like my brain reverts to these old neural pathways.  Reality is I’ve always had social anxiety on some level so even though I was always friendly I did it with anxiety there.  So I’m my current state, I can’t expect to not have some anxiety when I socialize like I did. So i had good feelings for sure but I think though when that happens for me, it shakes things up and then I end up paying for it.  
 

I’m generally calmer, more in control than I’ve been. I’m still just sensitive to stimulation and it can be difficult. I’m encouraged by my better days I’ve had the past 2 weeks.  I’m now almost 3 weeks off of melatonin.  Monday is 3 weeks. My assessment is being off it has widened my range or feelings. Good and bad.  I’ve had better highs with positive veins but I’ve also had harder waves. Things have slowly decreased over the past almost 3 weeks to where I’m close to baseline but not quite there. I’m hoping that today goes like it typically does and things calm down as the day goes on. I’m not sure how active I’ll be. As of more I have dinner with my in-laws tonight at 6:30.  I’m hoping of I make it a light day that I’ll be ok to attend that. Otherwise I’ll probably do light chores, try to watch tv if I’m up for it and try to be close to my family.