Fightinghard: overcoming

[Fightinghard]

Hello @Altostratai apologize for any misrepresentation I may have given.  I’m not trying to insinuate that melatonin results in a withdrawal syndrome.  I did read about case reports (versus a study) where people stopped  melatonin abruptly and it did result in problems in those cases.  I don’t remember the sample size of cases.  I’m pretty sure it’s in ‘science direct’ but I’d have to search it up again.    In my case, it could all be coincidence or just normal WD but my decline coincided exactly with when i arbitrarily reduced my dosage by about 50%.  I’ve used melatonin for years on and off prior to WD and I’m a proponent.  Based on my anecdotal experience and the limited cases i read, i just thought it was prudent to consider that melatonin does impact the ‘brain chemistry’ albeit in a very limited way when reducing it.  For me, i think i was already in a sensitized state and the change was enough to set me backwards but like i mentioned earlier, that is speculative and not fair to project as fact. 
 

i guess my thought is you can never be too safe when dealing with supplements whether initially or coming off of them while in WD.

 

I’m coming off the melatonin the next few weeks just to do what you said; quell my suspicions. 
 
thanks for all that you do and i appreciate your insight. 
 

 

[Fightinghard]

So I’ve come to my crossroads in this journey.  It’s been tough. Basically my wife believes i have anxiety that is causing all my issues and my psych society doctor confirmed that to her yesterday. I tried to ask them how anxiety causes my startle reflex to be on steroids? Or sound or light?  Never mind the other symptoms.  My most recent wave whether from the change  in melatonin or just the course of the recovery really hit hard.  I do believe I’ve been dealing with aka for awhile but this wave it intensified.  I just always thought it was inner restlessness. Until the terror hit and the extreme avoidance because everything was so overwhelming.  Anyway, with my wife adamant that the WD is not my problem and it’s just anxiety I’m not sure how to move forward.  She’s talking in patient rehab, etc.  I’m open to therapy as i go through this for sure.  I did it for 9 months.  I practice mindfulness daily.  But the symptoms i have don’t go away with these things. I wish. But they’re intense and difficult.  So if i don’t do what she wants, i might as well just leave.  If i stay and do what she asks, who knows where i end up.  I can’t blame her. She’s really only trying to help me. But it’s so hard.  The hardest thing really is she has not ever accepted that my issue could be from WD.  Is always been anxiety.   Oh well.  I’ll muscle along somehow.  I’m just not sure if i need to leave and move in with other family while i heal.  Maybe that’s the only choice if i truly want to get out of this. But with kids is so hard. My wife thinks i just need to stop thinking about it and move on. I’ll stop for now. 
 

i hope everyone is moving along! 
 

 

[Hanna72]

Hi @Fightinghard

I am so sorry to hear that you are still suffering so much. Anxiety can be so debilitating and I know how you feel. 
Have you considered reinstating a small amount of lexapro? It might stabilise you, and keep you balanced. I too was far out without my drug when I did it, and it helped me out. I too did a way to fast taper and payed for it. 
I know it’s crushing to even think of putting these drugs back into our systems, it’s just a gentle suggestion for you, hope you don’t find it offensive.

I can understand that family members don’t understand this journey of ours, who could blame them and they only have our well-being at heart.

Praying for you and my thoughts are with you.

[Fightinghard]

Thanks so much @Hanna72!  Yeah I’ve considered the lexapro. In factI have the rx for the liquid with me. I’m just not sure if i have Akathisia if it’s worth the risk to get worse. So we’ll see.  I’ve said from the beginning of this, it’s one day at a time.  That’s all i can do. 

[mstimc]

Hi Fighting

One thing to remember that may be helpful is that the coping tools for WD and garden-variety anxiety are the same.  Your body and mind have trained themselves to react in certain ways to stimuli that otherwise wouldn't be a problem.  Using the tools you've already learned--mindfulness, being present, etc. will help no matter what.  The cause isn't as important as your plan to deal with what you're feeling.  You can do this!

[Phoenixmama]

@fightinghard hi I hope all is well , you are in my prayers.... 

[Phoenixmama]

@Fightinghard im thinking of you my friend 🙏

[Fightinghard]

Who is been awhile and I wish I could say I’m so healed but I’d not the case… I’m dealing with aka.  It’s been pretty rough but it seems to be calming down slowly.  I’m basically ‘agoraphobic’ because of how sensitive my cns has become.  I definitely have had this the entire time but the melatonin reduction kicked it into high gear.  I’m currently tapering off and I’m at .26mg.  I’m going slow and even so I see an uptick in symptoms.  I don’t have the pacing but I’m dealing with the restlessness, agitation, terror/fear.  If I wasn’t so sensitive to things, I believe I’d be doing much better but that is really my issue.  It seems to exacerbate all my other symptoms.  Anyway, I’m still fighting and I believe I’m healing.  Yesterday was my best day since April and really my 2nd best day yet.  In fact last week I had several windows with pet low Symptoms.   My sleep is still about the same.  Most nights I get a 4-5 hour stretch then another few. I’ve had a 7 hour straight night this week and another night with 8 total.  I did taper last night so my sleep was off.  
 

Anyway I hope all is well with everyone!  I only taste melatonin these days. I stopped all other supplements to be safe.  I’m now almost 14 months.  I believe if not for the melatonin mishap I’d be much closer to the end.  I still believe as I taper off I’ll feel better.  In fact my restlessness and agitation are both really calming down and some days gone.  
 

 

[mstimc]

Hi Fighting

You know recovery isn't linear and there are going to be bumps, especially as you taper.  But you also know you got this!  Its great you haven't given in to the negative ruminations--they will pass.  Just take it nice and slow and always be kind to yourself!

[Fightinghard]

Thanks my friend!  I hope you are well!  I’ll probably check in more often but I’m trying to stay off and distracting with other things. It’s hard being stuck at home but it will pass. I’m slowly getting better. 

[Phoenixmama]

@Fightinghard❤️☀️

[Fightinghard]

I’ve had a stretch of windows and waves the past few weeks that has been encouraging and I hope a trend for the positive.  I’m much less agitated, restless and fear had been less.  My major issues now are this feeling of distress, sensitivity to stimulus like light and touch and thermoregulation is off as well.  This past week in started to watch tv some for the first time in probably 15 months.  I was more social with family and my agoraphobia calmed down a lot.  I was feeling better and as my parents said I’m so much better than 2 months ago.  Mornings were better with lower symptoms. But today I’m back in the waves.  I decided to exercise several days in a row and I think that may have set me off.  Or all the TV.  My windows are not 100% but they are much better.  Last week I also had several windows and some pretty clear.  So I’m hoping this wave passes quickly and I can get closer back to life.   I’m 15 months off meds.  My melatonin set back was in May and in late August I decided to stay B out at.23 mg and heal while on it. For whatever reason reducing melatonin upsets my symptoms greatly so I’m not messing with out for awhile. No other supplements at this time.  
 

 

i hope others are healing.  I’m hoping these next few months I’ll turn the corner. 18-24 months seem to be a common point for some to improve. 

[Phoenixmama]

@Fightinghard 💞

[mstimc]

Hi Fighting.

 

The key phrase here is you’re doing better than you were a few months ago.  A wave is temporary but your improvement is permanent.  You’ll get through this wave and continue recovery in no time!

[Fightinghard]

@mstimc thanks for the encouragement!  I know it will pass. I was having some decent days there.  Maybe tomorrow will be better!  

[Hanna72]

Hi @Fightinghard

I was so glad to read about your improvements, you have come along way, and every improvement is one step closer to healing.

 

 

On 10/8/2021 at 10:16 PM, Fightinghard said:

I’m 15 months off meds

Congratulations 👏  that’s amazing. 
Embrace those windows and keep walking through those waves, because now you know they always turn into wonderful improvements. 

All my best to you!

[Fightinghard]

Thanks @Hanna72!  This few wounded have been nice.  But those current wave is a rough one!  The past few days each day is a different symptom revisiting me but the intensity has been higher. Insomnia hit me last night.  Not that I was sleeping perfect but I was doing ok overall.  Last night was back to the surges walking me up.  I still probably had 5 hours of broken sleep.  But to go back to the surges was not fun.  
 

I’m in a tough phase now.  Feeling better in some ways makes me want to push a little and do more.  But I’m finding my cns isn’t really ready for it in most cases. But the distraction of being with family or simple things like watching tv with them really is good emotionally.  It’s so hard to balance.  
 

Today starts with anxiety which compared to last year at this time is much better. Still very difficult but better. Usually things calm down as the day moves on.  I hope so. I’m hoping for a nice window later today!  
 

one thing that I’ve learned in my journey is more than anything your body and cns need consistency.  So I’m doing my best to avoid any supplements, etc and trying to be confident in diet. I’m hoping that I’m really getting close to some better days. We’ll see

 

 

 thanks again!

[Fightinghard]

I’ve always  struggled with what a window is.  Right now, I’m feeling much better than the post few days but I’m still limited. My cns is just on high alert so things seem to ‘startle’ me but without as much response as in the past. Probably one of my more difficult symptoms is my intolerance to conversations and people, tv. This was much better the past weekend but it’s still here.  I get a tight heavy chest if I overdo it.  The fact that this weekend I sat and watched football with my dad and didn’t hesitate I’d huge and shows healing.  My hope for today is by this evening I’m able to sit and socialize more. So from a windows perspective I’d say I’m having less intense and less symptoms albeit still very limiting.  I would push through some of it but there’s no reason to do It so I’m trying to give my cns a break. So I’m declaring a partial window.  
 

it’s really amazing to compare my journey from back in March and April to today.  It’s so different.  In some ways I’m better but in others I’m worse.  The agoraphobia is frustrating to say the least but until my cns calms down I think I’ll be dealing with the problem.  I do believe it will start to fade here soon as I’ve had glimpses of it lessening.  I can’t change what I did in May to set this off but I do think of be much closer to healing had I not reduced my melatonin amount. I guess it doesn’t matter.  I’ll keep moving along.  Praying for speedy recovery.  

[Fightinghard]

I’ve been at this now for over a year.  I’ve mentioned I’ve had waves and windows especially the past few weeks. Today is a bad day.  I’m cycling through symptoms.  I started out with fear, then agitated, the a feeling I’m not sure what it is.  Is like I’m overwhelmed and uncomfortable.  I did have my tight chest and a mild burning.  My legs and hands are sensitive.  And lastly, My nervous system is hyper vigilant I think. If a fly passes by I notice it and I kind of blink.  Maybe startle some.  Sometimes I’m not sure if this is normal but then in resize that I’m still very ‘aware’ of things like that sometimes.  

While I wish I had no reason to be here, I’m glad I’m back here.  It’s been good to revisit things and find the stories n of success for hope.  Days like today are hard. No question.  But knowing I’ve had windows and seeing the patterns of others helps to distract from the day. 
 

keep on pushing through!  
 

 

[mstimc]

Fighting, even after 12 years off the meds, I still have rough days. That’s the nature of anxiety and OCD.  But now I know it’s just my brain messing with me, and I have the tools, ability and the power to write it off, like a day when my allergies flare up.  One low day doesn’t mean the next one has to be the same.  You have the perfect attitude and approach to handle your WD and recovery.  Here’s to tomorrow!

[Fightinghard]

Watching TV has been something that I’ve not been able to do for most of this WD. More and more I’m able to tolerate some sports, news and shows.  I’m able to watch more videos on my phone.  So it seems my cns is calming down a little bit. Is like everything; up and down. But the Ups are higher than they’ve been.  Today was also kind of a different day. Very agitated, restless and generally feeling bad.  But with that, I had a sense of feeling ok.  I can’t explain.  I was ok feeling the way I did most of the day.  My Mom even commented that I had a good day which means I was social and involved.  I was able to distract from the symptoms better and still be present in the conversations. That is new for new.  Is been really hard to do that in recent months. 
 

I chalk this up as some subtle healing. Little by little. I can see the changes. Note I just have to be smart and not disrupt my cns with unnecessary stresses.  
 

 

[Fightinghard]

Well things continue to change for me.  My mornings seem to be calming down some.  They are still not ‘normal’ but the intensity has reduced a lot in the last few weeks.  Overall I’m feeling more like myself but with symptoms of that makes sense.  I can’t explain it.  I’m doing more things now that I wouldn’t have been doing a few months ago.  I’m less uncomfortable around people and that feeling like I need to leave and get home if lessening and sometimes gone.  Who knows where this will lead but it does seem like things are improving. I think the emotional symptoms are calming down and the physical are still there. I’m really not sure but what I do know is that it’s very different than 4-6 weeks ago. And in my mind different is good especially when it seems less. I hope this trend continues.  I know the deal now and I know the ups and downs so I’m not ready to declare I’m recovered or even ready for a sun.  But in do think I’m getting closer. 

[mstimc]

What a wonderful and hope-filled post, Fighting.  It’s so important to share your recovery journey with others who are just starting.  Accepting the bumps in the road is all part of the recovery process.  You are doing great!

[Fightinghard]

Well I’m on the struggle bus the past few days.  I’m dealing with ‘raw nerves’ with sensitive to things like movement and sounds although it’s much better than months ago.  I think I’ve been overdoing it for where I am in this recovery. My setback back in June Basically set of agoraphobia and this really changed.  Anyway, I’ve been consistent now on melatonin for 2 months and I’ve seen changes.  I’m much less restless, agitation is better and in general I’ve been able to do more.  The past 2 nights my sleep has really taken a turn for the worse with waking up multiple times with symptoms and feeling uncomfortable. Generally I’ve not had this recently at least not this intense. Since I’ve been feeling a little better I’ve been staying up later and watching a little bit of tv which I’ve not done for over a year. But the past 2-3 weeks it seems in can tolerate more videos and tv.  I’ve driven more lately and remain busy at home distracting from symptoms with laundry and cleaning and cooking and short walks and whatever else I can do. These waves are rough especially when you’ve been on a better path. My baseline has been better than months ago. 
 

One variable in my recovery that at times can really ‘plague’ me is my use of melatonin.  At this point, my plan is to hold tight on it at my current dose of .23mg and heal while taking it. After much research I concluded that melatonin does not cause ‘injury’ to you like medications can. So while I’m convinced that reducing my dose back in May set me back, I think that was a situation of changing my ‘homeostasis’ and my body needs time to acclimate. My rational mind says that I can heal taking it just like so many people have done before. Again it’s not a drug.  There are no support groups for melatonin.  But in this irrational state I question if it’sa problem.  I guess I have to have faith in the process and keep going.  

[Fightinghard]

It’s been the usual rollercoaster week. Last Wednesday I had a really nice window most of the evening.  It was really nice.  I spent quality time just talking with my daughter.  I’ve was doing enjoyable things. Nothing crazy b but a nice break.  I tend to get small windows most days.  Thursday was a challenging day. I went with my son to his doctors appointment.  It was a long drive and the appointment was b over an hour.  But I made it through ok.  Yesterday was busy.  I’ve been pushing myself to walk more and light exercises.  So I did that and took a trip to the store. I’ve been doing better at the store but yesterday was hard. Last night I watched some football for 40 minutes. Today has been harder than usual.  Yesterday was a day off symptoms cycling. Restlessness, some energy, I call it high energy days.  Today is low energy. My body doesn’t want to move much and I’m sensitive to things.  So even simple chores are challenging.  In August and September I would be doing things constantly most days because of all the energy. Now , I’m less motivated and it takes alot to do things but in do anyway. 
 

So since my setback in June, I’m slowly coming back to where I was and honestly probably further. As soon as I can tolerate more Stimulus in think this will be much improved.  Tin still bake other things but they all seem to be the result of my cns not tolerating things.  
 

I’ve learned with this that less is more.  More than anything the body needs consistency to repair itself. So I’m not changing up anything at all.  I have stresses in life that are unavoidable but other than that I’m keeping it simple and low stress.  No more mishaps (missed doses of melatonin, taking clonidine, too much activity).  
 

maybe next update I’ll be in a better place.  I’m trying to remember getting windows is a good sign.  Thanks!  

[Ktven48]

@Fightinghard

how are you doing?

 

i do believe melatonin can cause issues.  It does affect dopamine receptors - It’s an antagonist I think. I don’t think it’s as benign as it seems. I have low mood after taking too much. Possibly your brain was used to a certain amount and withdrawal made things worse lowering your intake. 

Just a theory. I hope you’re having better days! 

[deg1979]

I can add that melatonin can add my experience that melatonin can have that effect. Before I understood how much our sensitized systems can react to small doses, I was thinking more melatonin was better. I have a supplement called Sleep3 that is 10 mg melatonin that time releases throughout the night. It also has L-theanine in it, which I may have a paradoxical reaction to. I was taking it to help my sleep issues. Mainly jolting awake throughout the nights, and then an inability to sleep after waking around 4 am. I read somewhere on the site that Alto recommended starting with the tiniest of melatonin doses because our bodies only make a small amount to begin with. A couple of my kids take it, too. I lowered everyone's doses to .5 mg, and it works really well. In my case, it works better. I think I was putting too much into my poor brain, and I did notice that I felt horrible the next morning, anxiety and symptom-wise. 

[Fightinghard]

 so just an update… I continue with the windows and waves pattern.  I had a nice window yesterday which shows me to work in my yard for probably 3 hours.  I walked a few times, went to the store and then grabbed food.  So is all progress for me. My most frustrating symptoms are this sensitivity to stimulus and people.  Long conversations, phone calls, tv, driving, etc all seem to stimulate me and I end up with discomfort in my chest.  Overall this had improved since June but it still is here.  I also have ‘raw nerves’ where my legs are sensitive and weird feeling.  This is also better than it was and at times had gone away.  I get short waves of restlessness, depression, anxiety.  My sleep is generally 5-6 hour stretch and sometimes I fall back to sleep after.  Mornings are hard most days.  
 

Today has been a harder day. Even so, it’s better than I was in June or July after my set back.  So I’m hopeful that I’ll continue to make progress and once this sensitivities to people and things calms down I’ll be in a better place.  I’m approaching 18 months off and I’m really hoping I’m in the 18-24 months of turning the corner.  I’ve had a few days the past few weeks where in thought I may be. But when you enter a wave it makes you think you’ll never make it out.  
 

@deg1979 thanks for sharing your thoughts.   Yes I believe melatonin can be troublesome for people in WD and for me it really caused a set back.  When I look back at my journey and I see that in January I cut my dose from 1mg to .3mg and I used a different brand I had a bad wave.  I believe I was starting to turn heal then and that set me back.  In May I really went backwards. But I’m slowly digging out.  Taking it day by day. I’ve had some decent windows with improvement the past 6-8 weeks.  I believe I will continue to improve over time. Thanks for checking in!

 

@Ktven48i think your spot on with what happened.  I think anything that can disrupt ‘homeostasis’ can cause issues.  Supplements, caffeine, alcohol, antibiotics, etc.   I don’t believe it’s ‘damage’ or ‘injury’ line with meds but I think your body adjusts to the consistent dose and when you change it things get out of sorts.  I was taking magnesium glycinate ‘as needed’ throughout the day.  Looking back I think it was giving me problems.  I stopped b it in July.  I tried a small amount in September and my anxiety went super high.  Again not bashing them or saying not to take anything but be aware that they can be problematic.  I’m still on the .23mg melatonin.  I’m planning on healing taking it and I’ll taper off when I’m stable. 
 

thanks!

[Fightinghard]

Before all this mess with the meds I was working out 6 days a week for 1-2 hours. I loved it.  I was in the best shape of my life.  One WD hit I went to walking 1 hour a day.  I did that for 11 months.  I had my set back in June and completely slowed down.  Walls were minimal.  I had in my head out made me worse.  
 

I’ve started walking again. 2 or 3 times a day 10-20 minutes.  Today I commenced using light weights. 10-15 minutes. I’ve been ready alot about brain injury recovery and dysautonomia and the literature supports exercise.  Some experts say that yes symptoms may increase but it is better for you for healing.  BDNF is critical in neuroplasticity and the best way to increase that is exercise.  At least move as much as you can.  So I’ve been scared of worse symptoms meaning I’m making myself worse.  Is just not the case. Now I’m not saying run a marathon trust today but exercise and fresh air are really good for healing the brain. Even if symptoms get worse initially.  I’m also going to do the Keto diet.  It also raises BDNF production.  Anyway, The more in good at this it seems you have to stress the body to heal the body.  I think the cns is the same.  It may cause discomfort but if done slowly and gradually it makes sense. So as best I can I’m going to get back and push myself to expand my world slowly.  Now I know when I was at my worst in June I want going to be able to do this.  Not note that I’m improving its time.  
 

i thought I’d share. I’m doing ok lately.  Still the same routine of hard mornings, sensitivity, restlessness, depression, anxiety, It, doom and gloom.  But they are all reducing and I’ve had some nice windows. 
 

wish me luck. I start light exercises today and I’m upping my walking. 

[Phoenixmama]

@Fightinghard 🌞💫 makes me want to get back to walking , I’ve stopped for two months , nice update ☀️

[mstimc]

You're doing great, Fighting!  Exercise is great therapy!

[Alice1]

I agree but your symptoms will increase if you over do it.  It’s freezing cold where I live now so if I’m going to walk I have to dress like an Eskimo.  

[Fightinghard]

@Phoenixmama thanks!  After reading what I’ve read If I were you I’d get out and walk as much as you can!  Be smart but move.  It’s how we heal.  Early on I read all the suggestions on light exercises and being careful with the cns.  I should have continued my exercise as much as possible.  Feeling worse doesn’t mean your hurting your self if you’re responsible in your approach.  I’m also ramping up social interactions.  That’s been hard but it’s healing. Anyway I’m rambling. I think when you can actively participate in healing it is huge for the psyche as well.  Yes Time I’d out healer but I do think you can reduce that time with good Choices. I hope you are well!  

[Fightinghard]

@Alice1  yes I agree on the symptoms for sure.  That’s been my holdup.  But everything I’m reading on brain injuries and concussions and stroke and Parkinson’s all say the same.  And they acknowledge the increased symptoms.  Now I definitely don’t want my aka back to where it was at is worse.  My aka mentor worked out the entire time during the worst of it.  Pacing between sets, panic attacks on treadmills.  He’s healed in 9 months.  Now we’re all different so who knows he could have healed the same without working out. But he did tell me it will get worse but it will feel better in the long haul. Trust me I’m not doing the workouts I did 2, years ago.  today I did really light curls and pushups.  Planks, a few squats.  A total of 14 minutes. Then I walked faster than usual for 14 minutes. My sensitivity ramped up but I generally feel ok.  What I read on brain injury just seems to apply to us.  I think it falls in line with what you told me. Once you feel a little better get back to life as much as you can.  Just don’t overdo it.  Exercise is the same.  If you go to your daughters track meet you may get more symptoms.  But the benefit it gives you emotionally is healing.  It has to be.  It’s snowing here too. I hate the cold!  
 

How are you hanging in there?  

[Fightinghard]

@mstimc Thanks!  Hope you’re doing well!  I think activity in general is healing of you can tolerate it.  I’m trying. Easier said than done for sure. 

[Alice1]

@Fightinghard

Im definitely not trying to discourage you from exercising, but when I recovered the first time I wasn’t exercising at all. I was moving and functioning though. I think it’s a good idea to start exercising again. Especially a routine like 30 minutes of gentle walking, but the tough part is continuing when the symptoms rev up for me.  Before I got Covid I was walking for 30 minutes a day, but things seemed to be getting worse so I got discouraged and stopped.  
 

If I might ask , who is your Aka mentor ?