Icip: Has anyone with these symptoms had them improve, or completely go away?

[Teppo125]

@Icip

I’m also near 10 month mark. Last month was good month. A day long windows with minimal symptoms. Last few days have been almost unbearable. This must be the 10 month wave. Sleep has been pretty good also last month.
Even the evenings are now not helpful like they was for months for me. When this wave fades I have to be a better condition. 

[KenA]

@Teppo125

What you describe is exactly what I'm going through as well, the first 2 weeks of month 10 have been insane!! Like you said, even the evenings have not been providing relief from the all day long symptoms! My sleep has been getting better and better as well. I think it may have to do with the fact that we are getting more sleep now so our brain and body is using the extra rest to get some powerful healing done!! I will say though, I'm starting the 3rd week of month 10 and the symptoms seem to be finally letting up a bit. I woke up yesterday and felt really really good for most of the day. And today I'm feeling really good so far as well. Of course this truly is a roller coaster of non-linear healing so I'm always prepared for the next wave, but it has been a nice couple of days. Stay strong!! We've got this!

[VincentV]

On ‎7‎/‎1‎/‎2020 at 6:57 PM, Icip said:

HPPD/Visual Snow Syndrome

 

I don't know if this helps by my stepdad was on venlafaxine for many years and quit quite quickly. He developed visual snow which lasted for a couple of years before going away completely. This was about 5 years ago.

[Icip]

@VincentV,

 

That brings me a lot of peace, thank you Vincent. I've heard from one or two holistic coaches that their patients who have it, all recover. I guess i'm plagued by the feeling of being 'me', and a different case to other people. I hope he's okay now, and yourself!

 

Icip.

[Icip]

Hi @Sunnyday,

 

Not a mountain of text at all, I use that phrase more often than not!

 

I've regained that feeling over the past three weeks or so - anxiety around COVID has skyrocketed, i couldn't care less about myself before. I don't necessarily want to die now.

How has your anxiety been since you last posted on here? It can change in a heartbeat, annoyingly so.

 

For me, my head feels a little weak, like my thoughts aren't as 'strong' as they used to be. I could verywell just be glorifying what i was like in the past; i jsut know that i was a lot more hyper, connected, and inward-facing mentally that i am now. I still love being by myself, occupying myself - i guess i just find it a little more hard to ruminate, and 'ponder'. It's like those five pills of sertraline have disconnected something, or taken something away from me.

I can only pray for this to get better. I weirdly enough want my full anxiety back, i want my emotional erraticness back, i still feel a little plain. Sorry for getting sombre.

 

I can go out for walks + talk to myself in my head - though i almost instantly forget what i've been talking about; i think i'm the same as you in that department. Has it gotten much better?

 

Icip.

[Icip]

UPDATE:   

 

Complications -

 

I've been having Ectopic Beats; they're terrifying,

 

For the past week, I've had a worsening sour taste in my mouth. It's not GERD, as brushing/food does not rid of it; all of my food tastes sour. Including Ben & Jerry's 😓,

 

Lose track of thoughts rather easily, + cognition still not fantastic,

 

Floaters became far worse after being exposed to a lot of weed smoke whilst moving (i live in a studenty area, as I'm a student). I tried/try to avoid it as much as possible,

 

Static in low-light, light sensitivity, afterimages, and double-vision, all still persist - as ever - they might have improved, my double vision certainly went away for a while/became far less noticeable,

 

ME, and little to no motivaton to do anything.

 

Improvements -

 

Hearing is as it was; i can 'feel' music once again, maybe not quite as much as before, but what do i expect with obvious low-dopamine,

 

Heartbeat is back to 'normal'. Standard Sinus Rhythm - this happened a few days ago, i noticed it's beats felt normal again, used my Apple Watch's ECG; and it read normal,

 

Floaters have resolved, i don't see any, compared to the four or five that had popped up a month ago,

 

I generally feel human again, i feel alive, present, and don't want to die at all,

 

I'm wanting to talk to friends outside of my initial inner-circle again,

 

I get the childlike 'highs' that i used to get - bursts of energy where i feel like i can do anything; which mostly consists of bad photoshop edits of my friends, a very very very long 3am walk, or editing photos off of my camera, Minor i know, but i used to rely on these 'bursts' to get work done, and i've done some of my best work during them,

 

My friend the other week told me that i seemed a lot more 'alert', compared to around January when i last saw him. This made me quite happy,

 

I went for a run yesterday - i could only manage a maybe 30 minute run, then the rest of was spent intermittently runnign with long periods of walking. I didn't feel worse, i didn't feel overstimulated - I was just out of breath as my stamina has been reduced to that of a, well, quite ill person.

 

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

I still hate going outside, which i attribute to my vision changes; it jsut scares me to look at + i find uncomfortable. I need to find my sunglasses, or buy some new.

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

I hope everyone who has posted on my thread is well, especially right now going through what we're all going through, I'm praying for all of you,

 

Icip.

[Icip]

I’m fully aware that I don’t ever necessarily address the ‘emotional’ side of my healing. Sometimes a list of what symptoms I still have, can’t quite convey the process, and feeling of that I’m experiencing; so I wanted to share.

 

When I was at my worst, in mid February, I felt empty, plastic, dead, constantly switched on, broken, dumb, and irreparable - my vision was completely grey when outside, everything looked alien, I felt trapped in a bubble, and found no pleasure, joy, or release from any attempt of escape.

 

Fast forward to now, going outside is still my least favourite thing to do (COVID-19 certainly adds to this), my vision still feels ‘raw’ and sensitive, patterns hurt my eyes, and any source of light still scolds my brain - though I feel a little more comfortable in my shoes, I have more control, and I don’t feel attacked from everything; even myself.

 

I can get home with a pastry from my local café, sit on my phone, and eat it whilst not really thinking about much - other than the hard feeling of the sofa against my back, as my muscles relax and are our at ease.

I no longer use my phone to suck my attention away to hopefully lose a few hours of dread, I now can give it my attention - that goes for anything, be it cooking (still struggle with finding motivation to cook/plan), or the limited amount of work I’ve had a go at.

 

I guess I feel more like me. It’s all well and good trying to describe how it feels to feel good, I think the only good way I can describe It, is to say that I feel more just like, me. How I remembered myself being before my adverse reaction.

 

I’m still not there yet, I think I’m a long way away from being ‘ok’, but I want to be alive, I want to do things with my life, I want to get better, and I’m at peace with myself, and my situation (I think).

 

Thank you all to whom read my thread, to the entire site, staff, and people who have helped me so far into this. I don’t mean this to sound like a ‘I’m all well and healed now’, as I said, I’m not at all. But I’ve been told that this is a cornerstone, as much as I’m pessimistic about everything, so I wanted to share despite me not wanting to jinx myself, as the purpose of this thread was yes to help me through this, but also to help others who need to see this stuff when desperate.

 

Icip.

[mstimc]

Hi Icip 

 

This is a great post!  Sometimes it can really help to look back and see the progress we've made instead of worrying about what may lie ahead. Healing may be slow and unpredictable,  but it does happen.  It's so great you can appreciate the things you've accomplished.  Keep moving forward!

[Icip]

@mstimc,

 

Thank you!! Retrospect can be challenging at times, but I think the most useful tool for mitigating negative emotion

[Icip]

Some things to add:

 

Hair has stopped/is producing less oil - I can go a week without washing + it still feels ok. When washed, it becomes so dry + brittle feeling.

 

Sensitivities seem to change constantly. Hearing can become dull, cognition can worsen on some days, and some days I can’t feel anything in my nether region, this ebs and flows, can be better on some days.

[Icip]

Hi all,

 

This has been a gradual happening through withdrawal; my hair seems to not get greasy anymore. Shampooing feels like it destroys it, and if i co-wash (only wash with shampoo - it doesn't feel too dissimilar to post-shampooing. Does anyone have any experience with this, or know whether it's withdrawal/reaction related, or as a result of my student-lockdown diet (i hardly cook for myself as i'm too scared to visit the shops, so since being away from home in another city, my diet has gone from rather good and healthy, to very snacky, and muesli/pizza orientated). Will any supplements help that are AR/WD friendly? Multivitamins?

 

Icip.

[Icip]

Hi all,

 

I’ve been feeling rather bad as of late, just very foggy headed, I decided to start taking multivitamins again, along with added b12, which hasn’t made me any better. My friend and I ordered a takeaway tonight, which I’d rather not do, but I rather scared of going out shopping - they put a lot of chip ‘seasoning’ on my chips by mistake as I asked for none.

Was very very hungry, so accepted that it may make me feel bad for a little while, though I didn’t expect it to make me feel quite this bad: tinnitus is worse, light sensitivity is worse, static in vision is worse, head pressure, and I feel very out of it/drowsy.

 

I’m very much so a do it, then think about it later person (not by choice), and I’m really thinking about (against) it now!

 

I guess that this is the call for a health drive that I’ve needed. I’m away from home living in my ‘student home’, I used to cook, and eat very healthily before loosing a lot of the motivation/drive to do so. I spent all of my first year of university only setting foot in a takeaway once, and that was just to buy some chips with my friends sometime near my birthday.

 

Other than these last few days, I’ve been feeling rather good - I’m starting to take an interest in some of my hobbies again, I’ve been looking to purchase a new camera; I’ve never been too pleased with my current one. So I’m looking forward to that.

I might start reading again soon, I have a very large (not that large) unread personal library.

[ChessieCat]

4 hours ago, Icip said:

chip ‘seasoning’

 

In Australia they use "chicken salt".  Yes it tastes really yummy BUT this usually contains MSG. Monosodium glutamate is a neurotoxin.

 

Most Chinese food contains it and als many savoury foods, eg chicken crisps/chips, Cheezels / cheese tubes, canned soups, frozen meals.

 

On a label it is flavour enhancer E621.  It tricks the brain into thinking food tastes better than it does.  There are also other flavour enhancers which I assume do a similar thing.

 

I've had MSG intolerance in the past from getting hooked on Pringles Sour Cream and Chive chips.  That was before ADs.  I now steer well clear of it.

[Sunnyday]

Hi @Icip, long time since I last visited your thread (and anyone else's). It was nice to read the post you made on August 1st, I'm happy that you are able to recognise improvements still and getting closer to your ''normal'' self. It's a great feeling I think, creates hope.

 

I'm sorry to hear that the bad food made you so much worse. There are so many things to be careful about to prevent things from getting worse when in withdrawal so it's not very easy to adapt, especially socially I think. Do you have any way of ordering groceries online over there? That is what I have started doing to avoid going into shops as much. It can get a bit more expensive, so I order together with my family and we share the extra fees. Not sure if there are similar alternatives over there.

 

Regarding the hair, I didn't really get the issue personally but mine started falling out instead and just looking very lifeless and lost the shine. I remember reading about people that found regular shampoo problematic started washing their hair with apple cider vinegar and also sometimes oils. I think it takes some time before the hair gets used to the oils but that it should adapt after a while. I'm not sure exactly how one would go about it, but I think there is plenty of guides online. I can imagine it might be cheaper as well, depending on what kind of oil is used. 

 

A big unread library sounds exciting, and so does a new camera to be honest.

 

I hope you're doing okay at the moment. Take care.

[Icip]

Hi @Sunnyday,

 

I’ve too been trying to spend less and less time here, it’s been happening naturally.

 

I wanted to come back here today though as today, the 26th of October, marks exactly one year for me since I had my reaction - when I started to feel more and more delirious and ‘empty-headed’ throughout the day, hoping it would go away with sleep; which it didn’t. I’m sad but equally proud to have made it this far, and that’s with your help, and everyone else who has gifted me their words.

 

I’ve been a lot more conscious of food since then, I’m not eating much right now - but I’ve been fine since. It was just scary to have that happen all of a sudden, and to feel so so bad again.

 

My hair seems to be ‘on and off’, some days it feels so dry and like it’ll all turn to dust and snap, others it feels ‘normal’. I’m just going to leave it alone I think, and try to eat the best I can, to the best of my abilities.

We can get online shops! delivery is extortionate though, and slots for them are always a week into the future.

 

Again, it’s amazing to have read, and seen your journey that you posted about a few weeks ago, that you feel good now, and I presume happy(?) despite the health missteps you’ve had recently.

[Sunnyday]

@Icip You definitely should be proud. I think it's also a good thing that we can usually see some clear improvements if we look back to the beginning, even if not recovered yet. The time it takes can be frustrating though and I can understand you feel sad.

 

I do feel happy for the most part, the current health issue doesn't bother me much emotionally. I think when we start feeling better a lot of these things can be handled a lot more easily and doesn't have to be more than a small obstacle. Had I gotten the same problem two years ago I'm sure it would've felt a lot more disheartening. It's easier now to see it as ''it could have been much worse'' and stay grateful for that fact.

 

How are you feeling lately, apart from the issues with the hair?

[JasonK]

On 7/25/2020 at 1:40 AM, VincentV said:

 

I don't know if this helps by my stepdad was on venlafaxine for many years and quit quite quickly. He developed visual snow which lasted for a couple of years before going away completely. This was about 5 years ago.

That’s great news!!! What happened and it went away completely???

 

unfortunately a couple of days ago I celebrated my 3 year anniversary with visual snow syndrome after my bad reaction to a single Effexor pill.

 

Most of the symptoms have subsided apart from the vision and derealisation/ depersonalisation(this one - I am sure it’s due to visual snow).

 

lets hope one day we wake up with no more visual snow.

 

p.s. Something creepy to add - it seems that I also had my bad reaction towards the end of October 🤪

 

 

[Icip]

@Sunnyday,

 

That’s great to hear about your health problem, maybe not as great as if it were to go away - but it’s good that it doesn’t cause worry, any health problem I have external of my adverse reaction worries me, whether it will intercept, or if it’s been caused by it.

 

I’m doing okay right now, my reaction tends to be less on my mind - while it’s still unfortunate that it ever happened to me, I can find happiness, I can forget about it, then I remember. Emotionally I’m not doing so great, problems with close ones, and my university course + the pandemic.

 

I loved my first year at university, I did well and got praise from my tutors. Which having adhd, came far and few prior.

I spoke about this in previous posts, just before my reaction I started to wish I went down the route of what I originally had always wanted to do pre-university - graphic design, and being still ill, and foggy headed - I wish I did it even more. I’m just feeling like I want to give up on everything. Which I think is a natural depression.

 

I feel better than ever don’t get me wrong, it’s just after all of this I can’t really find joy in my course, my head still isn’t ‘right’ and clear like it used to be, but again it’s hopefully still getting better. It’s just a lot.

 

I’ve spoken to one of my friends from the site about this, how did you manage the transition from being so ill, to reality? Coming to terms with your old responsibilities, whilst not feeling so much like your old self? I’m really quite struggling.

 

Also well done on getting moderator:) I’m sure you’ll be amazing as you’ve been that for me over the months I’ve been on the site, almost a year now.

 

Sorry for the mountain of text, you don’t have to reply to all of it. Right now definitely is the hardest part of my reaction, having to come back into the real world still with ailments.

My eyesight has not improved, neither has tinnitus.

My cognition is returning but very very slowly. I feel more like myself than ever, but still not exactly like me. A bit like saying that this years iPhone is the best ever; of course it is.

 

I hope you’re well Sunny, what are you up to right now? Working? Have you been painting in your free time?

 

Icip.

 

[Edit] - how is your cognition? Is your thinking the same as it was pre-antidepressants? Do you feel like yourself again? Sorry if this is a sensitive question, this has consistently scared me, I know I’m feeling more and more like myself, able to think, to spiral from anxiety again, and to just have my inner voice as my own best friend (in a non-psychotic manner, just chatting to myself all day in my head), it’s just a worry I’ve had for a while. Thank you.

[Colonial]

23 minutes ago, Icip said:

this has consistently scared me, I know I’m feeling more and more like myself, able to think, to spiral from anxiety again, and to just have my inner voice as my own best friend (in a non-psychotic manner, just chatting to myself all day in my head), it’s just a worry I’ve had for a while.

 

Sorry to butt in...but...

If you think about it, you probably get better advice talking to yourself all day long than anyone else you probably run into so...

I wouldn't worry about it.. 😎

[mstimc]

11 hours ago, Icip said:

I’ve spoken to one of my friends from the site about this, how did you manage the transition from being so ill, to reality? Coming to terms with your old responsibilities, whilst not feeling so much like your old self? I’m really quite struggling.

Hi Icip

I dealt with the same issue as I got farther into recovery.  Who is the "new me"?  I finally realized the new me was what I chose it to be.  At first, I wanted to go back to the "old me", but the old me was the anxious one who started taking Paxil.  I wanted the new me to be able to deal with life on my terms without the meds.  That's a scary step because its incertain and a little dangerous--getting to know yourself all over again.  But its been a great journey and I'm a much more empathetic and understanding person than I was before.

 

You'll continue to improve and get more comfortable with your new self as you progress.  Good luck and positive thoughts from Portugal! 

[Sunnyday]

Quote

 

I feel better than ever don’t get me wrong, it’s just after all of this I can’t really find joy in my course, my head still isn’t ‘right’ and clear like it used to be, but again it’s hopefully still getting better. It’s just a lot.

 

I’ve spoken to one of my friends from the site about this, how did you manage the transition from being so ill, to reality? Coming to terms with your old responsibilities, whilst not feeling so much like your old self? I’m really quite struggling

 

 

Hi @Icip, 

 

It's good to hear from you. I'm sorry to hear about the things bringing you down right now though.
I remember when I felt that things were starting to improve enough for me to start getting back to things (studies and other responsibilities), life felt very stressful and overwhelming. That time period was very hard to balance at first since I was still experiencing parts of withdrawal. For me it became extra important during that to be forgiving and realise that it's okay we're not able to do things as well as we would like to yet, but we're getting there eventually. I remember all of a sudden my expectations on myself kind of went through the roof because I saw such significant improvement, but I had to step back a bit and realise I wasn't fully healed yet and that that's why I was so stressed out. My expectations didn't match my reality.

I don't know if it's the same for you but it caused me to get into more waves as well until I came to that conclusion, and was able to adjust the expectations. I think it can still be stressful but less so, especially if we use all the things we've learned to cope and also accept feeling more bad some days/weeks. Because I found the waves could catch me off guard even more when I was further into recovery whenever I didn't keep this in mind. 

Pretty much a lot of forgiveness was what helped me, be my own friend (a lot of comforting myself) and accept any potential outcome regarding school and work, because we can only do the best we can.

Having that mindset of ''it is what it is'' helped a little to not increase the worry. And knowing that while we endure it, it will get better and better. I don't know if this is helpful or not, but it's how I tried to look at it personally.

 

And thank you, I hope I'll be able to help on the site more this way.

 

I am well for the most part, thanks. Less painting lately unfortunately but hoping to get back to it soon. Have you been able to spend time on any hobbies?

 

Quote

how is your cognition? Is your thinking the same as it was pre-antidepressants? Do you feel like yourself again? Sorry if this is a sensitive question, this has consistently scared me, I know I’m feeling more and more like myself, able to think, to spiral from anxiety again, and to just have my inner voice as my own best friend (in a non-psychotic manner, just chatting to myself all day in my head), it’s just a worry I’ve had for a while. Thank you.

 

My thinking is back to normal, and to be honest it seems to be better than it ever has been. I think it has to do with waiting out the WD but also working on things I had issues with before going on the drugs. This situation sometimes forces us to work on very difficult personal issues. To be able to find other ways to live life than coping with substances, since the drugs are not an option anymore. Or at least that's how it was for me. It's scary and confrontational, but so is withdrawal and we get through that, so I think we can get through the other things as well and end up even better than before because of it. Hopefully my rambling makes some sense.

And that bit scared me a lot too, not knowing if I'd ever feel like myself again but I actually feel like a better version of myself now.

 

I hope you will feel a bit better soon, and that the problems with your close ones can get resolved as well. That stuff can have a big effect on our wellbeing I think. 

 

Take care.

Edited November 14, 2020 by Sunnyday

[Icip]

Hi @Sunnyday,

I hope you’ve had a nice Christmas/holidays.

Thank you for your words - I’m starting to be on my side a little more, accepting that I’m not quite better yet, and thinking about all the people in the word that have learning difficulties, or dyslexia, as with my own work, it feels very much so like I have one.

Little headspace, not very concise thoughts, feel slow, slow to take in information, my head feels less like a calculator, as it used to, if that’s not a vain comparison, and more like a pile of mulch; sloppy, viscous, and stodgy.

My brain feels less ‘sensitive’ now, a lot less, I can drink caffeine if I’m careful to limit my dose, though overwhelmingly I feel damaged, like the rug covering the damage has lifted, and I feel human again, but different.

 

Today marks 14 months since my reaction started, I still have: visual problems, tinnitus, derealisation that comes and goes, and poor cognition that I’ve listed above. This is all I have left now.

 

I can feel my cognition improving, though horribly slowly - it feels like it’ll be another year till it’s anywhere close to being what it used to be. The feeling is a lot like my brain is opening itself up again, I have a lot more room to think, and it feels more ‘spacious’ where thoughts can sit and dwell.

Again, the improvement is very small, and almost unnoticeable, but I can notice it atleast.

 

I really enjoy photography, or atleast I’m trying to. I got a new camera a few months ago to replace my old one as I think I was starting to outgrow it, though have had limited use with it as I haven’t really done anything since the first lockdown in the UK, so I like to spend a lot of time editing said photos n making them pretty. It’s a Fujifilm, the colour science on Fuji’s is beautiful, I’ve found my own visual problems, have become good inspiration for the type of photos I’ve been taking recently/how I edit them. I’d love to do more with it but there’s only so many pictures I can take around the same city. I used to run a lot, though that became hard with the joint pain I used to have, and the dp/dr at the time for some reason put me off of it - I didn’t feel as connected to everything around me as I would before, which I used to like. I’m also thinking of trying my hand at painting, light reproduction + texture in photography is something I try to focus on, I don’t think I’d be very good but I’d like to think that the idea is transferable to paint. I’ve gotten back into Lego Star Wars collecting too haha, I used to as a kid, and a mixture of not having much to do, and also from trying to comfort myself with familiar things.

 

I’m glad to hear about your cognition, we’re you ever scared about it? I guess it’s one of those things that you really do only have one of, and living without it to its fullest extent is a hindrance more than the loss of any other limb, or organ (other than the heart).

 

I had a friend that said that adverse reactions/withdrawal are worse than any other condition/illness, as you’re not yourself. From other conditions that are even deadly, you die being yourself. I’ve clung onto that quite a bit.

 

I’ve come to love, and appreciate my friends more than I ever have through this, I’ve met some wonderful people through my late-teens to now, and they’ve at times felt more like a family, than my actual family. I actually read someone else say this, before I’d ever posted anything (it scared me loads as I didn’t want to change, I wanted to just be me), they said that they’re a lot more people-centric now - they don’t worry so much about themselves, or material possessions, but just their friends, and family. It’s been quite enlightening actually, and I feel more emotionally attuned with myself, and other than I ever have, like I appreciate whatever few words I may have with someone, I’ve been getting such a kick just from saying happy birthday to friends old and new hahaha.

 

I think it will be another two years before I’m better, if I ever get better. Looking at it now - visual snow takes a while to go away, along with tinnitus, and my cognition whilst recovering, is doing so slowly. I had two reactions, if that changes anything, one from one pill, then a month later from five pills which I took after mistaking the initial adverse reaction for worsening anxiety, which was the most anxious I’d ever been in my life.

 

Sorry for THIS wall of text and rambling Sunny, it’s sort of a reply to you/general update on everything.

 

I’m not being as frequent with my updates as life feels pretty normal now - I just feel damaged, there doesn’t seem to be any new symptoms ever - though I’ve been having a few derealisation waves recently, which I haven’t had since the very beginning.

 

How have you spent Christmas, and have you gotten anything nice? I got some noise cancelling headphones - I’ve always easily gotten overwhelmed by a lot of external stimulus, I think it’s an adhd thing, it’s a little worse right now because of my reaction so I thought it would be a good idea, they’re rather pretty too.

 

Hope you’re doing well Sunny! Have you been doing anything work-wise? Or now able to work? Don’t feel the need to reply to all of this, as I said it’s a combo message!

[Sunnyday]

Hi  @Icip

 

It's great to hear you notice your cognition improving. Unfortunately it is so typical with this, the slow pace. 
I also love how you managed to use your vision problems as an inspiration for something so creative with the photography.

 

 

On 12/26/2020 at 7:43 AM, Icip said:

I’m glad to hear about your cognition, we’re you ever scared about it?

 

I would say it brought me down and made me extremely disheartened rather than scared. I had a lot of doubt in regards to the future since it messed up the ability to learn and focus. Looking back I think it's very cool how the brain seems to be able to heal itself so well with time, since there's such a big difference now.

 

 

On 12/26/2020 at 7:43 AM, Icip said:

I’ve come to love, and appreciate my friends more than I ever have through this, I’ve met some wonderful people through my late-teens to now, and they’ve at times felt more like a family, than my actual family.

 

Very relatable. This kind of experience seems to have that effect. Some people especially become invaluable and like you say almost family.

 

I spent christmas with my closest family, it was nice. I find it a bit overwhelming as well with christmas at times so I understand you. Although for me it's more the people that are a bit overwhelming, haha. I can imagine the noise cancelling headphones would be useful.
Am doing pretty well, no work recently since I have a lot of other things going on now. Studying full time and some other stuff. Are you still doing the university course?
 

 

Hope you'll have a nice New Year's Eve Icip, it's great to hear from you as usual.

[Icip]

@Sunnyday

Hi:) it’s cool to notice the brain healing - just not a very fun process to be a part of. How has your new year been, and what do you study? Would you say things are quite normal for you again? It’s lovely to hear from you as well as ever Sunny.

The Noise Cancelling headphones have been great, I really love music n am constantly through the day - for quite a while my hearing was so dull, n would shift between being too sensitive, and being ‘dull’; it worried me quite a bit, they sound great n my hearing is fine now, so I’m happy. Good for walking too as I’ve been doing a load of that by the canal in my city.

How has your new year been going? Is your leg problem still under control/ok?

 

Icip.

[Icip]

Long Overdue Update.

 

Generally I’ve been feeling ok, my vision is still distorted and rubbish, though day by day I’m becoming more comfortable with it as much as I don’t want for it to be normalised.

 

I’ve had a few dp/dr waves, after having bad anxiety triggered by a few things. I’m in one right now n it’s the most unpleasant.

I noticed that I could tolerate coffee again, I bought a coffee grinder, and coffee machine the other day to celebrate n to get back into it like I used to be pre-adverse reaction; I just wanted to feel like me again, I wanted to have my old routine back - it was nice till I started to feel really a few days ago, generalised anxiety, ontop of a destable brain caused by coffee has pushed me into another dp/dr wave. I’m going to be a little more careful in future.

 

I’m becoming quite deflated and down about my situation. I just want to be normal again, to feel normal, to drink with my friends (moderately), to meet new people, to concentrate on my university work, and so I can be the friend to my friends that they’ve been to me. For all I’ve improved, for all that I feel better, the slow pace of recovery makes the end feel so far away, especially having Visual Snow aswell, which seems to take a lot lot longer than other symptoms to heal.

 

I went out for a ‘date’, the other evening, I spent the entire time wishing that I could have been someone good enough, or ok enough to actually be good for them, little things like this are just getting to me; normality feels so far away. Thank you to all on this site who’ve helped me, people who have reached out to me and all. Not to sound hyperbolic, but this is the most pain, the worst almost-never ending nightmare I could ever imagine. It feels like a long nightmare, sometimes I forget that I was ever ok as my whole sense of reality has shifted, the old me feels like my life, n that stopped and I’m in a different universe. I’m writing this incredibly tired, and having pushed my nervous system to the brink of crash with several cups of black brewed coffee a day, and stress. It sucks, I just can’t wait to be able to tell write an overly positive message on this site.

 

Icip.

[Lostinwonderland]

Keep your head up, VS is a very aggravating thing too have. It will go away with time I assure you. I had it before. Twice and recovered both times. Now is my third time and I know its just a waiting game. We have alot of the same symptoms especially the vision. Mine is very very slowly getting better Also I too have been able to drink coffee again but if I over do it then I will rev up my symptoms I usually drink three cups over a 14 hour period. Still can't drink energy tho. Its charges my nervous system to much. 

[mstimc]

9 hours ago, Icip said:

sometimes I forget that I was ever ok as my whole sense of reality has shifted, the old me feels like my life, n that stopped and I’m in a different universe. I’m writing this incredibly tired, and having pushed my nervous system to the brink of crash with several cups of black brewed coffee a day, and stress. It sucks, I just can’t wait to be able to tell write an overly positive message on this site.

Hi Icip

Going through the trauma of WD and recovery can't help but change us, and force us to question who "the real me" is.  But nothing can change your intrinsic value as a human being in this world.  I, too, worried if I would ever be good enough or strong enough for others, especially my loved ones.  In the end, it made me more empathetic and understanding of others' struggles. And it made me realize I'm much better dealing with reality than with the stories I write in my head.  Recovery is a long hard and rocky road but you will make it!

[Icip]

Hi @mstimc,

 

Thank you for your words, I’ve felt that in some instances. At times I’ve felt more comfortable in my own body since my adverse reaction, than I ever have done before. More comfortable, and more able to be a better friend.

 

I’m still facing the ups and downs of it all though - my neighbours (at my student home) smoke a ton of weed, it stunk my entire flat out around a week ago, and since I’ve had head pressure, and have felt really spaced out - I was pretty anxious about it, and getting overly anxious normally makes me spaced out for a while, though something at the back of my head always tells me that the drug did this, and it’s permanent. I’ve come back home to my parent’s and I’ve decided that it’s probably best for the foreseeable future to stay here.

 

I think the reintroduction of coffee, and the stress/anxiety has charged my nervous system a little more than I ever have in the past - or atleast I hope this is what’s happened, and that it’ll go away. I just feel disconnected (moreso than usual, I started to feel quite grounded actually before this), my head’s foggy, it almost feels the same as when I have too much caffeine - like my brain in a certain area is overly excited. The anxiety I had which caused this lasted for a few days, so I don’t expect it to abate anytime soon, maybe it’ll stick around for another week or so, that’s if it goes.

 

How are you doing? It’s been awhile, how was your Christmas? Are you still in Portugal?

 

Thank you,

 

Icip.

[mstimc]

2 hours ago, Icip said:

How are you doing? It’s been awhile, how was your Christmas? Are you still in Portugal?

 

Hi Icip

 

Great to hear from you!  We're still in Portugal but hope to return to the States in the Fall once the vaccine has been more widely distributed.  Christmas was okay, but we miss our son and other family terribly; it'll be nice to be home among them.

 

Regarding the feeling of head fog, it could be related to your neighbor's weed habit.  I'm allergic to almost all smoke; it gives me a ringing headache.  And the few times I tried weed in my teens, it left me foggy and mushy--anything other than peaceful or euphoric.  I think your parents' house will offer a nice respite and a chance to get some balance back.  We all go through those periods when we think we'll never recover, but you will.  Your nervous system is still trying to find some balance--it will come with time and being in the right environment.

 

Take care!

[Icip]

Hi @mstimc,

 

How do you find your experience in Portugal, compared to the states? I think you’ve found yourself in the most ‘different’ part of Europe (culturally speaking) - or atleast I think it is from what I’ve seen. Are you still ‘enjoying’ it as much as you can during a pandemic?

 

I’ve felt especially rubbish today, whereas I felt quite a bit better yesterday evening. I really got back into coffee, black coffee namely - so I suppose with that, the weed, and anxiety/stress around the weed, I think I’ve ‘crashed’ my nervous system. I don’t really feel depersonalised, nor derealised, but I feel disconnected and ‘damaged’ in a familiar way which I couldn’t really put my finger down on. I feel right now how I felt during the evening when I first felt all of my symptoms come on, and how I felt the day after, and after that, so yeah, like my nervous system is horribly charged. I even have a feeling of something malfunctioning, or going wrong in my head - it’s hard to describe but I last had it two Christmasses ago. Hopefully with time it eases, and goes away; I’ve got a rather large amount of university work to be doing.

 

Home has been nice, my Dad isn’t the most considerate, nor understanding person in the world - though it’s not that hard to make him turn a blind eye as he’s a big softie for my step-mum. He can say hurtful things in regards to how I’ve been since getting ill, I’ve just had to accept that not everyone will understand, nor does it mean anything as he doesn’t understand.

 

Thank you for replying! I’m reading Capital by Marx for my course right now - I’ve found some solum in reading within recent weeks as I’ve felt able to again. Actually enjoying more than I have for quite a while as I used to, but stopped reading around the time of college.

 

I hope you’re staying safe in Portugal,

 

Icip.

[mstimc]

Good Morning @Icip!

 

Portugal is different in so many ways!  Coming from California, anything built before 1920 is "old".  Here, its not unusual for people to be living in houses hundreds of years old.  The language is especially challenging; my wife and I speak Spanish, but Portuguese is much different.  It sounds like a mix of Spanish, Italian and Russian.  But the people here are very gracious and appreciate any effort we make to communicate.

 

Its been a major cultural shift but we've learned a lot about ourselves and what our real priorities in life are.  When we return to the States in November, we will be living very different lives with a much simpler outlook.  

 

8 hours ago, Icip said:

I’ve just had to accept that not everyone will understand, nor does it mean anything as he doesn’t understand.

 

It can be hard for others to fully understand what we experience.  Even my wife, who has been very supportive throughout the years, sometimes gets frustrated and can't understand why I just don't "get over it."  But as you say, we can't expect others to live inside our heads.

 

I find great relief in reading as well.  I like American history and I'm just finishing my third reading of Shelby Foote's 1,000 page history of the final 15 months of the Civil War.  I also do online classes through the Great Courses, usually history or religion.   I also love watching Youtube's videos with Tony Robinson walking ancient hiking trails and the great cathedrals of England.  You certainly live in a beautiful country!

[Icip]

@mstimc,

 

I can imagine! I think that's the beauty about different parts of the world, each have their own take on life. I have some friends who live on the mainland of continental Europe - it seems quite freeing to be a drive away from a ski resort at any part, or to have the mountains, and the areas of open land that are over there; it's quite different to England. While nice here, you can't escape people, i can walk as far as i can into the countryside and i'll still manage to pass people - the same goes for land development, and housing. It's a little suffocating.

That's nice to hear, simpler is normally better, i think this experience in itself has taught me to appreciate the things i once took for granted or couldn't really process, like my friendships, morning coffee, and feeling comfortable in my own skin.

 

Oh are there videos of Tony Robinson doing that?! I really like him, especially in Blackadder if you've seen that, i'll have to have a look!

I have Karl Marx: Capital to look forward to tonight - i have an assessment on it in a few days, and havent been able to bring myself to revise. I find it really hard concentrating with my vision, and whilst not feeling fully like myself. Same goes for motivation, i really wish i could sleep till this all goes away. Have you heard of Michel Foucalt? He's one of my favourite political/social theorists, even economists, his work transcends any names as much as i don't understand him myself. I've a huge backlog of books i've been meaning to read since pre-reaction. Kinda sad.

 

I wanted to ask, and you've answered before but i've not really known how you meant it. Do you feel like your old self, in that you feel stable in your mind, and feel human and not damaged like i presume you used to before the medication/withdrawal? People say that they're a new person after recovering, and i do feel already like a completely different person in that my perspectives, and motivations for life has changed, along with my image of myself and society - but i mean more of a mental/physical similairty, that you feel 'normal', and fully healed?

I feel cognitively speaking 'almost there', i have brain fog but i generally feel ok unless anxious/charged my nervous system up. I just feel this slight sense of being 'off'/out of it, which i think might be dp/dr, which can be attested to my vision if it is. I think i'm going to try either a benzo (once to see if it changes my vision), or an anticonvulsant, i think Lamictal can work in some cases of Visual Snow Syndrome in reducing symptoms as it slows down areas of the brain that are over-metabolising. I probably won't end up doing this as having a reaction to one medication i think has given me a bit better judgement on ingesting things which no one really knows how they work, and mess with as sensitive an organ as our brain - though i've started thinking about it, not for a long time till my nervous system is a lot more stable/healed. To be honest i can live with the static, after images, colour changes, and tinnitus, it's just the dp/dr that distresses me as it tends to get worse when i'm stressed, which then leads to me worrying that it'll never go, and i avoid everything that i think will make it worse.

 

Thank you for replying mstimc, it's always nice to hear from you! I hope you're okay,

 

Icip.

[mstimc]

Hi Icip

 

Here's a link to one of Tony Robinson's videos:  https://www.youtube.com/watch?v=Kmx-D8DyzUM&t=1800s.  I find them quite interesting!  I've heard of Foucalt and his theories about the relationship between power and knowledge, but I haven't read his work.  I might as soon as I finish reading a book about the myth of the "Lost Cause" of the Confederacy.  Good stuff for an American to be reading right now.

 

 

8 minutes ago, Icip said:

I wanted to ask, and you've answered before but i've not really known how you meant it. Do you feel like your old self, in that you feel stable in your mind, and feel human and not damaged like i presume you used to before the medication/withdrawal? People say that they're a new person after recovering, and i do feel already like a completely different person in that my perspectives, and motivations for life has changed, along with my image of myself and society - but i mean more of a mental/physical similairty, that you feel 'normal', and fully healed?

 

This is a great question and well-phrased!  Yes, I do feel more stable and able to deal with adverse situations, especially when it comes to handling anticipatory anxiety (the doom and gloom feelings).  I also feel more drawn to spiritual issues--not a specific religion or denomination, but the sense of being connected with other people.  OCD never really goes away, so I need to continuously practice coping and mindfulness techniques.  Reading and video classes are great ways to help me stay grounded and not churning negative thoughts over and over in my head.   I think the biggest change is that I've moved past just surviving and actively seek ways to enrich my life.  My wife is really great at finding new growth opportunities for both of us.  

 

One thing I'm looking forward to when we get back to US is getting back into woodworking.  I did quite a bit before we went overseas.  I had a very challenging managerial office job before retirement, and woodworking was a great outlet for me to be physically creative instead of just using "brain power."  Anything creative is also incredibly life-affirming.

 

Hope this helped!

 

[Icip]

Hi @mstimc,

 

I do recommend Foucault, especially when paired with Schumpeter, or even Marxist/Gramsci theory of state. It’s transformed my perception of society, and capitalism at that!

 

Thank you for your words, does that ever shock you, that you’re able to feel that level of stability again? I can’t ever imagine feeling fully okay; the day to day mental pain just sort of feels like the norm.

What were you making from wood? My Dad is a carpenter, a large part of my childhood was spent sawing wood + nailing random pieces together to make dubious ‘chairs’. I made a desk for myself the other week, and I’m planning on making a bookshelf (bookshelf = nailing a plank of wood to my wall, with supports underneath, so not complicated).

Oh it is, I can imagine the fulfilment. What does your wife think about it? I imagine it to be one of those ‘boys and their toys’ sort of things.

 

After studying politics at university, and having quite a stressful A Level (post-high school, pre university) experience - I’ve been trying to get back into being a little creative, like I used to be. I always wanted to go into design, whether graphic, or more material-based when younger, and up until university even. I’m still not sure what was going through my mind when I chose to study Politics; I love and enjoy the subject, it’s just becoming a bit tedious now. I’m trying to get into painting, I made a huge pastel picture on my wall last week, I’m quite proud. I like the idea of having pictures on my bedroom walls, or even posters, though I’ve always felt like it’s ‘cheating’ to buy cheap prints, as I’d always want to do it myself

[mstimc]

8 hours ago, Icip said:

Thank you for your words, does that ever shock you, that you’re able to feel that level of stability again? I can’t ever imagine feeling fully okay; the day to day mental pain just sort of feels like the norm.

Yes, I often surprise myself.  As my wife says, I sometimes go overboard with a problem (with my OCD) but she knows I'll get my balance back pretty quick.  Besides coping tools, I think we eventually just get tired of creating crises.  I went from constant fear/anxiety to feeling just kind of numb, and then finally stable.  It takes time but it will happen.

 

I did different woodworking projects.  I made a custom bookcase for our house and some other furniture pieces, but I also made little things like desk organizers.  When we get back to the States, I'm already committed to making a desk for my wife for our home office. 🙂.

 

Keep on painting!  Doing anything creative takes you out of your head and focuses energy on something positive instead of ruminating on negative thought cycles.  Plus it affirms your value as a person.  I'd love to see what you painted on the wall! 

[Icip]

Aw I know the feeling all too well, it's sort of like your 'head blows up', and it takes a little while for the ashes to settle, then at least I can think about a problem more rationally, or forget about it and move to the next worry. My OCD has only been getting worse recently. For a few months it almost disappeared, along with a lot of my emotions, and ability to 'feel', ability to 'feel' even music (which scared me a lot), though since around early May, I never manage to find a second of peace anymore, there's always a worry that feels so real, and so catastrophic, then I manage to get over it and move to the next. My OCD has always been bad, just never this consuming, consuming of my energy, and consuming in it's ability to find something to be worried about. Did you say that it was apart of your withdrawal symptoms, do you think it could be that? That would at least provide some space of mind as it's felt like I'm gradually going insane - I've never done much to fight my obsessions, or compulsions.

 

Did the bookshelf fit into your wall, or custom in size? I can imagine you have a lot of books - that's been something I've always wanted to have, a large book collection. I just have to make sure to read them all first as it defeats the point to have unread books lying around!

 

Have you ever tried wood carving? I'm not sure of the name of the tools, I think planes? But that's quite fun if you wanted to make something a little more ornamental. I tried to make a spice rack for my step-mum last summer, though it's been repurposed as an egg holder!! (I carved out spheroid bunkers for in my mind, the pot to sit in).

 

Honestly, I've never found my politics course to be very fulfilling, whilst in enjoyed first year, it never felt like 'me', as much as I'd always wanted to be more academic. I wanted to go into graphic design pre-university, it's what I wanted to do, or at least some form of design course. I still am not sure why I chose Politics, I love it and I'm so grateful that I've been able to study it as it's given me a whole new appreciation for the world; I wouldn't call myself a Marxist, far from it, but as a critique of Capitalism - it doesn't half change your world view, and show you what your priorities should b in life, which is I think being more fair to people, and seeing money as nothing more than a means to a goal, and not the fetishised aloof of security it's made out to be. I've been blessed with an amazing professor, he's really the only reason I think I enjoy Politics as he teaches the Political Economy realm of Politics - which is the only part that I find myself enjoying anymore.

 

Did you go to University, if so what did you study? Have you always been into reading? Have you read any books in Spanish, or atlas since you've been in Portugal?

 

I'll try and see if I can put an image on here! I haven't really done anything like it since I was a child, and I'm also horribly colourblind, but I'm proud at least!