Believer

[Believer]

Hi @Kat66

I’ll answer your question about my most prominent symptoms on my page.

 

Fear with situational anxiety sprinkled in. Fear is always there, but situations can cause anxiety. Fear of being alone. So crazy! All of it is so out of character for me. I don’t like to go far from home, even if my husband is driving, for fear I won’t be able to get myself back home (my safe place) or that I won’t be able to respond to something out of the ordinary because I am on hyper alert all the time and my thinking/response is whacked. I used to love to travel. Not anymore. Just trying to choose a box of bandaids (why are there sooo many to choose from, I just want to get it and get out) Haha! This in itself is very disturbing, I have always been a take action, get ‘r done type of person and my work office was dubbed the watering hole because of the number of people who would come to me for advise.

 

My sleep is good as far as the amount of hours, but I never feel sleepy, my mind spins until I wake up (like wide awake and jerking, with mind still spinning) between 3:00-4:00am and realize I was asleep. And I never feel rested. No energy.

 

Myoclonic jerks: I haven’t been able to find a cause/effect for these. They happen mostly when going to bed, and upon awakening, sometimes while driving (anxiety provoking) when my arm jerks the wheel) or my abdomen jerks, which isn’t as frequent.

 

DP/DR, which isn’t as severe as it used to be, but still disconcerting not to be able to feel connected.

 

Short term memory is bad, probably because my mind is so busy spinning on s***.
 

Loss of spiritual connection. I know God is still God, still there so  I continue to pray. 
 

Processing, afraid I’ll burn the house down trying to cook something or cut myself and have to seek medical care. 
 

Almost daily blurry vision issues, no more double vision. Balance issues/some dizziness.

 

Fear that I will get worse although I have seen some improvements. I haven’t experienced terror or night panics for a long time. So thankful for that!

 

I’m sure there are more but I’ll leave it at that.

 

How about you, what are your more prominent symptoms?

 

[Believer]

@Greatful

17 hours ago, Greatful said:

I am the worst one for constancy. 

I’m right there with you on that. Haha.

 

17 hours ago, Greatful said:

Is that the first time you experienced D/R? 

No, I’ve had DP/DR for 18+ months to varying degrees and during and adverse reaction to Wellbutrin XR in 2015 when my GP told my ZOLOFT was no longer working for me and did a straight swap from one to the other, that was very bad after 20+ years on Zoloft. This time was different in that I felt tunneled and flat.

 

👇🏻Me too, hopefully this improves at some point. I still struggle with accepting that.

 

Hang in there and keep sharing your light!

18 hours ago, Greatful said:

a long as I can make it to my pillow every night and do a little bit here and there throughout the days, that has to be what gets me by for now.  

[Greatful]

@ @Believer You have memory issues too. I can hardly remember the mornings later in the day, yesterday is spotty and anything before that is in a blur.  My true touch with any reality is the hour I am in. LOL  Even then I wonder how much I am in reality LOL.  I think there is a piece of my brain missing.

 

Take heart, your brain is healing from this. You see improvement.♥️

[Kat66]

@Believer I think one of the scariest things about WD is changing so much as a person and thinking you'll stay like that. You saying you used to be the one everyone came to and now you can't make decisions about bandaids - I can really relate to that. I can relate to a lot of your symptoms, especially crap memory, D/R, and absent mindedness (burning the house down or cutting yourself). Also, sleep. I never feel rested either, and often wake between 3 and 4. What is it about that time of night? Even if you're asleep you don't feel rested, what's with that!

 

Fear is a massive one for me too. It's like the amygdala is in control and that's that. It's not relinquishing control any time soon. I think fear is a dominant symptom for many people on here.

 

I'm not religious, so I can't specifically relate to your loss of spiritual connection, but I do feel a lack of purpose and joy. That must be tough for you, though, knowing that God is there but not feeling it....

[Ariel]

Hi @Believer

Thank you for your kind message <3

I am thinking of you and sending healing vibes <3

[Kat66]

@Believer how are you doing? xx

[Believer]

Hey @Kat66

Thanks for checking in, it means a lot! Doing about the same. I had a couple of days a week and a half ago where I was feeling better, felt pretty confident while driving into and around town with my hubby, then “bam! get back in your hole”, where I’ve been ever since. Dizziness, vision issues, anxiety and irritability top the list. Wish I could get away from myself.
 

We went out picking up trash on our road (windey (sp?) two way, country road that people live to speed on), and I found myself walking like I was drunk. Just off balance and out of it. Didn’t feel super safe but did get a full trash bag in short order and I didn’t get hit or have to dive into the bushes, so feel pretty good about that.

 

My husband is leaving for a cross country, week long trip in the morning and I’m definitely not excited about being alone. This feeling is new for me and makes me feel like less than a child. Check in with me next week to see how I’m doing, please. 😂

 

How about you, you having any good days? Have you made any cuts to your dose?

 

Hugs,

 

Believer

 

[Kat66]

Hi @Believer sorry it's taken me a while to get back to you - our Queen died on Thursday and it knocked me for six, lots of unexpected emotions, lots of fatigue!

 

I'm glad you've had a couple of days of normality, I get those too, but then the shutters come down as they did with you, so frustrating, but you get used to the pattern of these things. I wish I could get away from myself too! How are you getting on on your own without your hubby?

 

Thanks for asking about me - I'll post an update on my intro thread xx

[Greatful]

@Believer  How are you doing alone by yourself?   I feel drunk and slow a lot. 😬 Then add in dizzy and well that means for a fun ride... Crazy, I wish I could write more but somehow my brain is lacking fluid thoughts and if I get a thought how to write it lol....Just know that I think of you and walking this journey with you....🌞

 

[Believer]

Hi @Kat66 Thanks for checking in. I’m sorry to read that your body had such a strong reaction to the grief you experienced over the death of the Queen. It’s really crazy how exaggerated the response can be in WD, even things that used to be positive experiences provoke a negative response, ramping the CNS up and increasing symptoms. Ugh….  
 

Doing pretty good on my own. Better than I anticipated. We talk several times a day so that helps. I even had a bit of a dirty window yesterday. Yeah, getting used to the ups and downs, looking forward to the days when the scale tips and the good come more often. 
 

You mentioned in another post that you used to be an illustrator, what kind? I’ve been watercolor painting these days. I have no vision, so have to have a reference and I struggle with water/pigment ratio so most of my stuff is rubbish, but it can be calming to watch the colors blend and bleed together, most times it is a distraction from my symptoms, but it seems to help.
 

@Greatful

Yeah, that dizzy, drunk feeling was laughable when I used to drink. Not so much now. 
 

I get that sometimes, where I struggle to string a thought together, out loud anyway. In my head they seem to flow quite easily at times, and not in a good way.

 

I find this quote from Pubmed infuriating:

 

“Drugs of abuse affecting the CNS include cocaine, heroin, alcohol, amphetamines, toluene, and cannabis. Prescribed medications or medical therapies that can affect the CNS include immunosuppressants, antiepileptics, nitrous oxide, and total parenteral nutrition.”

 

No mention of ADs. Not that taking them as prescribed is abuse, but taking them every day for years, (or in some cases one pill), doesn’t affect the CNS as the illicit drugs listed above? They all affect dopamine and/or serotonin. Are ADs not mentioned because they are developed and prescribed by highly educated people and made in in  “safe, sterile” environments that make the pharmaceutical companies billions of dollars,  rather than being purchased on the street by a local dealer? 

In our case, the symptoms we experience during withdrawal or poop out are “OUR depression, anxiety, the unmasking of a new mental health disorder, etc”.  The medical community takes no responsibility.
 

For illicit drug users, the drug of abuse or cessation of said drug is recognized as causing the symptoms. 
 

What a double standard, and there seems to be no reasoning with the educated providers on this. At least that’s my experience. This is still tough for me to accept.

 

Sorry for the rant, that’s not usually not my style. Just frustrated with the lack of recognition in the medical community regarding the harm these drugs cause to the CNS. Illicit drug and alcohol abusers are offered treatment/rehab and support. We get labeled with new “ disorders” and offered more pharmaceuticals and told its all in our head. My trust for most medical providers has been pretty much shattered. Their arrogance is astonishing.

 

Okay, I’m done. 

[Kat66]

Hi @Believer, I'm glad you're coping reasonably well on your own. When's your hubby back? Oh, my previous career? Yes, I was initially a humorous illustrator, and moved onto general illustration. I was quite successful at it, but my creative mojo has now deserted me, probably in part as a result of long term AD use. I'm glad you use art as a form of relief from your symptoms. I believe it can be very effective in calming one down.

 

Also to say I'm totally with you on feeling like AD users aren't properly recognised as the victims we are - have you read 'Your Drug May Be Your Problem? I'm reading it at the moment and realising how good a PR job the industry has done on us all. I don't involve my doctor in any decision about my medication. They are totally useless.

 

 

[Believer]

Hi @Kat66

My husband is due home this afternoon. Yay!

 

I haven’t read that book yet. I have been interested in it, but for some reason I can’t explain, I’ve put off. Maybe I’m afraid I will find it triggering, or that it’ll make me angry. Not sure, but it is on my to read list.

 

How are you doing? Are you still holding on your current dose? I’ll likely drop another 5% in the next week or so.

 

 

 

 

[Kat66]

Yes I am holding at my current dose, I darent drop at the moment as I’m in a godawful wave!

 

How are you feeling?

[Believer]

@Kat66

Doing about the same, no dirty windows for a couple of weeks. I will cut my dose again, most likely this coming Monday. I no longer see the predictable waves/windows that I had a couple of years back, and holding doesn’t make a difference. 
 

I hope that your seeing some relief from your symptoms.

 

Let us know how your doctors appt does.

 

Hugs

Believer

[Kat66]

Hi @Believer you've been in WD since 2019 is that right? And you're still in the midst of symptoms? Don't you just get to the point of just utter exhaustion with it all? It sounds like whatever you're doing at this stage, nothing makes much of a difference? I'll post a little update on my page. 

 

Sending love xxx

[Believer]

Hi @Kat66

I’ve been tapering since 2015, up until Nov 2020-4.57 mg (at which time I had been holding for 7 months) I had the expected windows and waves of tapering, when I somehow went off the rails. I’ve wondered if I may have caught Covid, having been working in a hospital, although not in patient areas. I never tested because I didn’t have the respiratory symptoms being reported, but I have read on a long hauler forum that the symptoms I had then/now are the same ones many of them experience. Who knows, it’s appears they both cause dysregulation of the CNS. It’s just weird after such a long hold to all of a sudden become so dysfunctional and experience all these new, crazy symptoms. I continued to hold an additional 9 months before I decided to cut again. At that time my sleep had returned, although it is very different and I never feel sleepy. I had gained back most of the weight I’d lost, the adrenaline surges had settled significantly and I stopped having polyuria.

 

So yeah, holding hasn’t helped me to stabilize to pre-crash the past couple of years. So onwards I trod. I hold at least 6 weeks between cuts (5%) and don’t see an increase in symptoms that aren’t unmanageable, although my baseline/WD normal is nowhere near normal anymore. I am exhausted by it all. The anxiety is awful, I’ve never had this before. I can feel the slightest stressor reverberate and sizzle throughout my body. For me it’s the worst symptom. I hope to just slowly taper off and pray for the best.

 

I’ll pop over to your page to see how your doing.

 

Hugs

[Greatful]

@Believer  Stopping by to say hi and send you a big encouraging hug🤗

[Kat66]

@Believer I wish to echo what Greatful has said and send you a big hug too xxxx

[Kat66]

On 9/22/2022 at 3:53 PM, Believer said:

my baseline/WD normal is nowhere near normal anymore. I am exhausted by it all. The anxiety is awful, I’ve never had this before. I can feel the slightest stressor reverberate and sizzle throughout my body. For me it’s the worst symptom. I hope to just slowly taper off and pray for the best.

Yes yes yes!!!! I can totally relate to all that.

 

Hoping you're managing to keep your head above water xx

 

[Believer]

@Kat66

Hi Kat, 

I’m keeping it just above water these days. Had an okay day last week then back in the hole. The okay days here and there give me hope but I wish they where more often. 
 

Hope you’re seeing some relief. 

[Kat66]

@Believer it’s such a long journey. And if it wasn’t for the odd ‘good’ (relative term) day I don’t know how we’d all cope. I’ve had depression episodes that lasted a few weeks that seem like a walk in the park compared to this cr*p. 
 

Stay strong xx

[Kat66]

Hey @Believer just checking in to see how you're doing? x

[Finnishgirl]

@Believer

I read through your thread, you have been trough rough times. I hope things start to get easier for you soon. ❤️

[Believer]

@Kat66

Hi Kat,

I’m keeping my head above water. My recent drop didn’t increase symptoms, which is good. They actually improved a degree or two for about a week. I think I’m starting to see a new pattern where they ramp up in the later weeks of my cut now. They go up and down but never leave, like an unwanted house guest.

 

How are you?

[Kat66]

@Believer how often are you cutting these days? The unwanted houseguest analogy is so accurate by the way. You just have to accept them, even make friends with them lol.

[Believer]

@Kat66

I have been cutting every 6 weeks. 1% a day, 5 days in a row.

 

How about you, have you cut lately?

[Kat66]

Hey @BelieverI cut yesterday from 1.25mg to 1.1mg. These small amounts are insane aren't they? But I'm determined to stick to the gradual reduction, as tempting as it is to jump off now.

[Believer]

Hey @Kat66,

 

Yep, insane for sure. How have you been since your last cut?

 

I met with my doc the other day and we talked about my slow taper plan and this time she was on board, no questions. I don’t know what changed since the last time I met with her but I happy she is on board!

 

 

[Kat66]

@Believer sorry for the insane delay in replying! Really pleased your doc is on board with your plan for a low taper, that's great news. How are you feeling at the moment?

 

I've just made the tiniest cut from 1.1mg to 1mg and am really paying for it with a deep depression and numbing anhedonia, plus rage and irritability. Perhaps it wasn't the wisest plan to cut just before Christmas.

 

x

[Believer]

Hi @Kat66

Sorry to hear that your last cut didn’t go well. Did you decide to uprose? How is it going?

 

I made another 5% cut, so t feel any better or worse so I’ll take it.

 

Still struggling with the same crappy symptoms from the vaccine, they are still somewhat debilitating, but improving, praise God!

 

Hope you’re getting some relief.

[Kat66]

Hey @Believer I went back up to 1.1mg and felt relief within a day. Christmas was good and I'm continuing with a window. I'm going to cut again in a month or two.

 

Sounds like your latest cut hasn't had too big of an impact, which is great. Remind me which vaccine did you have? Do you think it mixed badly with your WD, hence the symptoms?

 

Hope you managed to get through Christmas ok x

 

[Believer]

Hi @Kat66,

So glad the updose helped and you’re in a window! That’s awesome.

 

I had the Pfizer vacs. I think it was an adverse reaction, just like people have to psych drugs. Absolutely turned my world upside down. It may have been worse due to the years of sertraline and tapering, who knows???

 

I am a lot better now, two years later, but still know where near where I was before I got it. 

 

I made another 5% cut (1% a day for five days with a 4-6 week hold). That speed seems to work pretty well for me the past couple of years.

 

Hope you’re doing well and will check in with an

update.

[Kat66]

Hey @Believer so sorry for the late reply! How are you doing with your cut? I'm still holding at 1.1mg and functioning reasonably well. That said, I've just come out of a window and am sinking into a wave. You just get used to it after a while I guess!

 

Sending healing thoughts xx

[Kat66]

How are you doing @Believer?

[Believer]

Hi @Kat66

I’m doing okay. Swinging pretty wildly the past several weeks, but on the good side, I am feeling a bit better on the upswing and the down swing isn’t as low, although it’s still pretty low. I have a bit more interest in things lately too.

 

The vision in my right eye fluctuates often and the muscle jerks do as well. I haven’t found anything that triggers it, but vision and jerks seem to be settling a little, for now anyway. It’s certainly tough when things ramp up after a bit of a reprieve.

 

I find that my taper rate seems to work well for me right now.  I read that you are going to drop by .1. Have you considered 5%, just to test the waters? It may go a little smoother for you.

 

I have been talking with the same counselor pretty much my entire taper journey. She told me to ask myself if the intrusive thoughts are “true”. And if I can’t say for certain “yes”, they are true, then to challenge them and replace them with the truth. I hope your therapist can offer you some tips that you find helpful. The ruminating and intrusive thoughts can be so exhausting.

 

Hang in there, you’re getting really low.

 

Hugs,

Believer

 

[rmce72a]

Hello Believer, 

 

I'm glad to hear your taper is ok, at least for now. My therapist and told me to replace my thoughts too, but that is so hard to do. Redirecting thinking is tough, especially in a wave. Best wishes for continued recovery.