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

[Icip]

Hi:)

 

tinnitus has almost gone. It was loud/noticeable before the past few months. I can hardly hear it even when listening for it.

 

re the above - I’m a lot better! I’ll do a big update at some point

 

icip

[Icip]

hei

 

Update!

 

Hello all, the past summer has been challenging in more ways than one - pushing a few emotional, and physical limits that I've developed over my period of healing. On the emotional side, what would've sent my mind skyrocketing in panic, stressed me out invariably yes, but was manageable - I took steps to improve my situation, and deal with it, though the 'dealing with it' took several months, over which a moderate amount of stress did start to aggravate my symptoms. My DP/DR was awful, and along with bad brain fog, my working memory and general comprehension seemed to dip greatly.

 

All of these are close to baseline, other than my comprehension; reading just feels a little harder as information feels a bit harder to take in. I have completely cut out caffeine - sometimes I slip up, and ask for a caffeinated, rather than decaf cup of tea at work, which makes me sleepy beyond afternoon hours, and worsens the aforementioned symptoms close to where they were at the height of me being stressed. I've sensitised my system, but thankfully, it appears to be able to go back to baseline with just a night's rest, and not much more. It's only really now that I'm able to see, and appreciate not just the linear timeline of improvements in my symptoms, but also the hardening of my nervous system. I in many ways feel more 'normal' and human now, than ever before, as my soul feels strong, my mind feels strong, I feel fixed in my body, and reality again. It's nice:)

 

I'd have to say, with a little better reading, and mental ability/'quickness', I'd be pretty happy with my healing! The visual snow does not bother me, other than when it gets worse, as I said before, the tinnitus is reduced greatly, all I really want, are the metrics which allow me to function, anything else is just a luxury.

 

I just wanted to say thank you, as I have done a lot before, to everyone on this site, I would not be where I am now without it. I graduated University a couple of weeks ago with a 2:1, and a First on my dissertation; all of which that was graded and went towards this, was done after my reaction all the way back to November 2019. I'm not happy that I got that grade, I'm happy that I got that grade having been going through all of this. I'm now starting an internship, I've moved into an intern house in my city's centre, in a Georgian park square with three of my friends who I'm lucky to be doing the internship with.

Then, I'm hoping, to do a Masters in Edinburgh, in Public Policy, or some form of conservation policy course, of which there seem to be many! I don't think I would have allowed myself to have even thought about the possibility of any of these things happening three years ago, so, healing has happened, as I'm sure there is a lot more to come.

 

Life is still harder, I don't feel 'fine' - I still feel the extent of which the medication has changed me each minute of each day, I feel limited, and whilst this has eased a lot, it still exists as I'm sure it will do for the next few years, or beyond. I just have a little more control over it, I'm able to have more control over it.

 

Again, thank you to all,

 

Icip.

[mstimc]

Thank you for posting, Icip.  It does take time and the effects linger, but you are healing and with your sense of resolve, you will continue to recover.  And congratulations on your graduation!  That's a huge step; even more so because you did it in recovery.  That should really give you hop for the future, and your Master's is a great incentive to continue practicing self-help and healing.

 

We were Edinburgh last November and hope to return in 2024.  A truly magical city.  Positive thoughts to you from the States!

[Icip]

Thank you @mstimc, that means a lot as ever to hear from you! It is pretty isn't it:) I've been watching many 'walk around' videos on YouTube, I'm hoping there's good cafés!

 

Icip

[mstimc]

Just now, Icip said:

Thank you @mstimc, that means a lot as ever to hear from you! It is pretty isn't it:) I've been watching many 'walk around' videos on YouTube, I'm hoping there's good cafés!

 

Icip

We found several nice places.  Of course I can't remember any of their names! 😆

[Icip]

Hi,

 

Just to add for future/external reference.

 

Saturday 12th November - woke up with sick feeling in the back of my mouth, stomach (actual organ stomach) get like it had been kicked.

Felt sick when standing for too long, almost fainted in the shower. Felt horribly cold, had to sit down for the entire day, feeling faint anyway. Then, actually fainted after running upstairs for a wee at 2am, in the bathroom. Waking up on the bathroom floor however much longer later. Had no appetite.

 

Sunday 13th - sick whilst standing up, same general feeling. Had to sit down for most of the day.

 

Monday 14th - sick off work, felt queasy, worried would faint, or be sick if confined to a small place, with little refuge to rest in if I did get worse. Felt more sick later. The sick feeling was more of a general ‘my soul feels sick/uncomfortable, equal to I want to throw up feeling. Noticed lights sensitivity.

 

Tuesday 15th - in work, felt a little weak at times. Hiccuping all day. Again noticed light sensitivity.

to add: I felt very ‘off’, and wrong over these days. Something just didn’t feel right, that felt beyond a viral, or bacterial sickness.

 

Fainting, as well as having an eternal sickness feeling/not being able to stand didn’t really go together as symptoms of a virus, without having a fever, cold symptoms, or general cold/flu feeling. The upset tummy too, again without evidence of food poisoning (I don’t really ever eat meat) made me think it was IBS.

 

IBS, as well as fainting (orthostatic hypotension), and light sensitivity I thought would indicate nerve problems. Whether they flared my IBS which I do have, or whether IBS itself flared my nervous system.

 

I haven’t stopped hiccuping today, after drinking water, after drinking anything, and after four hours of not drinking - each period I’d spend atleast half an hour hiccuping. I’ve been hiccuping for half an hour now.

I had a look on Google (sue me) at overly regular/persistent hiccups without liquids as a trigger - and the first thing that popped up was vagus nerve dysfunction.

 

which after having very clear POTS symptoms for the first year or two of my reaction, and vagus nerve dysfunction being common amongst us; this has all added together to peak my curiosity a little.

 

whether this is a flare up caused by me, or something changing - I haven’t done anything, consumed anything, nor am stressing enough to warrant such an alien nervous system reaction. I just thought I’d share - I do like little things like this piecing together! Reminds me of earlier on, after my reaction.

These are more notes to myself, to be able to build a linear view of my recovery, and symptomatology than a continued dialogue - equally for others!

 

Blessing, and healing,

 

Icip.

[KenA]

Hang in there @Icip! This too shall pass!! You are doing awesome!!

[peaceandlove]

Hello how are you? I was wondering if you ever had acid reflux as one of your withdrawal symptoms ?

[Icip]

Hi all -

Sorry for the absence of replying to direct messages, it’s been a tricky past few months.

i was already operating out of quite a high stress threshold last autumn, and I’d hoped that it would reduce back to my baseline over the winter; but it only really kept getting worse. From persistent quite low, lows over the winter, that lasted far longer than any previous experienced SAD episode, to post-Christmas, awful, awful, anxiety, worry, and persistent stress that would come from my ocd generally being itself, and pressures from my job, and having a job at all now being a graduate. It all really started to take a toll on my well-being.

 

Through this, I had a morbid ‘drugged’ feeling, brain fog, and generally quite bad depersonalisation - of which I’d started to become upset at it’s impact on my social abilities, or just closeness to my friends. I felt walled in, erratic, and like I was reacting to what was being said, rather than anything more present, and conscious.

 

I’m not sure what got over me last night, but I decided to take a quarter of a 25mg tablet of lamotrigine - the medication prescribed to me for the VSS/migraines that I’d put off taking for the year that it had been sat in my many various student homes’ kitchen cupboard. I was terrified taking it (obviously), but felt some relief in that I have a constant, and regular rota for the next few weeks at my work.

 

Today (writing this at 1am, about to sleep) I have not felt this connected to the world, present, calm, and I guess like myself since before I took Sertraline. It’s really quite profound, scary yes, but bittersweet(?).

 

I’ve spent today staring out of windows, sat on buses, slowly walking around my work, just being present, and experiencing life a little more like what it is, and was for me.

im not completely there, but it’s as close as I’ve ever gotten.

 

my constant malaise has gone too, I feel like I have energy again, or an energy for life?

As far as I’m aware I have no side effects. I just feel like me. Though, a little more mellow, and estranged from my own condition than to how I had become used to. I have peace with my future plans, peace with my thoughts, opinions, and place socially within my current household (that I’d felt volatile in living with all new people for this year). I can better sit, listen, chat, and connect with whomever im talking with - it’s just so weird. Normality feel weird, not having to just skim the surface of existence, to make it to the next day, but ti actually exist within it, and live for it? I’d again forgotten how it was like.

 

i don’t want to be dependent on a drug, but wow, im floored to be a bit more crass. I feel human again. I’ve within the last hour taken my 6mg or so dose, I don’t have facilities to properly dose as I do intend to micro-dose. I do not feel drugged, I do not feel charged/wired, I can think with purpose, and direction; something that came seldom.

 

Any advice, information, or just general opinions would be hugely appreciated as to my current predicament - as human as this is, im scared.

 

icip

 

(Edit: lamotrigine/Lamictal is an anti-convulsant, prescribed for seizures, migraines, Visual Snow Syndrome, and a lot of other things really. It operates theough different neuronal channels to antidepressants; hence why I felt relatively safe in trying it)

 

(Edit 2: one side effect that’s just popped to mind - I need a wee a fair bit more. I had a high tolerance for needing a wee, so it’s probably just made me a bit more normal anyway)

[mstimc]

Hi @Icip

 

If you temporarily need something to help get your sense of self back, that's not a bad thing.  It shows you can get those feelings back--they haven't been taken from you forever.  Its normal to be scared a bit; you haven't felt normal emotions in a long time, so you need to remind yourself its ok to feel ok.

 

Now you can work on maintaining that feeling without the med.  Take it slow and work on practices and methods that will help you maintain the feelings you regained.  Positive self-talk, reality testing, gratitude and acceptance all have a part to play. Be kind and patient with yourself and you'll find you won't need the new med forever!

[Icip]

Hi @mstimc,

 

Thank you for the words, I'm finding it very tricky to 'reality test', not necessarily in an exclusively compulsion-related way, but not taking enough time, or having enough time to ground myself. I only tried lamotrigine for three days, again at a relatively small dose - the fear of likely future withdrawals, having to go through the process of tapering at one point of another (which I, with a short attention span, and little patience loathes the idea of), along with a constant panic of any weird feelings, or sensations, that in my head indicated that I might have been having a reaction.

 

It was just nice to have that one day, and as you have said, shows that it's all still there, and luckily I think a lot of my current condition can be resolved with extensive therapy.

The feeling of being 'me' lasted for two or so days after I stopped taking it. I thought for those two days that it obviously hadn't done much, but now after having a pretty usual, panicky, and brain foggy day, yeah, I don't know how I feel about it. I ultimately didn't want to keep taking something that had the potential to harm me, I worried that I might have a reaction to it, it might 'kindle' my nervous system, even now I'm constantly checking myself, and how I feel, how my cognition 'feels', to see if it's hurt me, as the head pressure, and 'mental block', were the first to come in 2019.

 

If I don't collapse into an inebriate state again, I might try it again in the future - with the knowledge that it's 'safe' - after I think I've had therapy, if that doesn't work.

 

It's just quite sad that feeling normal, was an experience in of itself.

 

How are you doing anyway? I hope everything is going well with you, and your travels!

 

Icip.

 

[mstimc]

Hi Icip

 

We've been settled back in Southern California for a little more than a year and working on our 75 year-old house.  But we're already planning on a return trip to Europe in the Fall of 2024!

 

Finding the right therapist can really be a godsend.  Once I found the right one, I was really able to use my coping skills to manage my anxious thoughts.  Like any other chronic condition, its an ongoing effort, but also like any other chronic condition, it can be managed and we can life joyful and fulfilling lives!

[Icip]

Hello all -

 

i have not wanted to make this post for a number of reasons, partly out of feeling so ashamed as to my thought processes, and actions despite all that I’d already been though.

 

after taking 6mg of lamotrigine, not feeling a terribly noticeable effect, and believing that I was in a better place to tolerate medications - I took a half pill, once a day, for two days. It was (in hindsight) immediately obvious that it was a bit too much for my system, despite *only* being double. On the second day, I was very overwhelmed, I couldn’t be around people, nor talk coherently (as produced by an effect of the drug) - I decided to stop, and praise God that I didn’t take a third half pill; I was close to doing so.

 

i made myself rather unwell - I became very sensitive to the sun again, had a general ‘drugged’ feeling for a week or two, or until it had fully left my system (1.5 weeks). My eyes ached, along with increased blurred vision, and a general difficulty in focussing that coincided with poor poor concentration. Increased brain fog, again, attention issues, a pressure in my head after mentally exerting myself, either through a 10-20 minute conversation, or the like physically. Fatigue, very bad fatigue, that came with the above symptoms.

 

It was awful, I did, and still do hate myself for what I had done - I’d managed to avoid the sense of repulsion at taking antideresssnts the first time round, but as so, I have it now as I can’t believe that I could have forgotten, and brushed over the extent of injury that I’d let myself achieve. Then now, in my head, I had done it again, though knowingly this time.

 

some weeks have passed, I think four or five. I’m in a much better place - my eyesight is a lot better, especially the light sensitivity + ‘unrealness’ that had returned from years past. With every day the fatigue becomes less so, though I still ‘crash’ and need sleep to regain what feels like my life force.

I’m finding it tricky to concentrate, though again - this seems to have improved, though a little more slowly than I would have liked.

 

I’d only recently regained the ability to read, and be engaged fully, and emotionally within a novel - to have lost this again, and to feel a return to pre-2021, is very upsetting.

i can fortunately still talk, write in a slightly blunted manner, and have maintained a lot of my cognitive processes - they just feel strained, and a bit upset about the very silly decision that I made.

 

my friend has recently started taking medication for anxiety; it seems to be helping her. A part of me that romanticised medication in the past, and believed it to be a ‘fix all’ for my problems reignited, especially as my problems became less and less reaction-based, and more a general horribly increased anxiety stratum - I felt safe taking it, even at 12mg (half tablet) which was only seemingly just above what had been recommended to reduce immediate withdrawal symptoms (this is completely my fault, and is a result of me bending the nature of my genealogy to suit my emotional wants), I did however just want a chance to feel normal, just like she gets to; it’s so unfair.

 

I’m again better, feeling better, and more energy-laden day-by-day. The fatigue is also less consecutively, though I still have persistent daily ‘crashes’ that need varying forms of rest, or escape to alleviate. Even writing this is an improvement on last week.

 

I’m hopeful, but still very scared. I’d come across an article detailing an adverse reaction as a traumatic brain injury, giving relative MRI scans of their brains showing increased white lesions, and a diagnosis of TBI as evidence to this. My MRI came back fine, and healthy in late 2021 - what if this isn’t the case for this episode.

 

i am ok, happy, able, and functional at the very least. I’ve been late to my internship a couple of times, and caught wrong buses when feeling overly tired, and ‘out of it’. I’m not as chatty, or expressive as I’d like to be, as my brain does feel royally turned down a few notches. Then I feel spaced out when I ‘crash’, not so much dpdr, but a known feeling of a stressed nervous system that has been getting better.

 

Foremost I’d like to say thank you to everyone on this site, and despite not necessarily being accountable to you - I would like to say sorry. Sorry for those who have supported me, posted on my thread encouraging, and being happy to hear of progress that I’ve made. I do hope that this is a blip, and a ‘kindling’ of my previous reaction, rather than a new reaction in of itself. In many ways I feel ok, and fine, I’ve just gained a few new uncomfortable ‘feelings’ that have added to an already pervasive rota of accompanying symptoms, and beings that had become adjacent to my life beforehand.

 

Not that I should be surprised after reading countless threads on here - it certainly is insane what just one base dosage of a medication can do to you.

 

If anyone has any knowledge of other users who maybe made unwise decisions pertaining to taking medications whilst unwell/after reactions - I’d love to know of their threads, for reassurance as I am again just a tad upset and worried. I want to be able to read again.

 

holding back the tears for how grateful I am to this site,

 

icip

[Icip]

I’d just like to add too - while I’ve had ‘symptoms’, they’ve not been too bad. The inability to absorb information I’m reading is a worry, though this varies - and might just be increased anxiety.

 

are adverse reactions ever traumatic brain injuries? The article I found was a little scary to read

[KenA]

@Icip Sorry to hear about your setback, but glad to hear that you are feeling better and moving forward again. While I never took another pill again, I did make the mistake of trying to drink alcohol again. It seemed ok for a few weeks, but then I started noticing some symptoms starting to return. Luckily I realized what was happening and cut out the alcohol again. Def a bit frustrating that I still cant enjoy a drink with my family and friends, but it is what it is! Always moving forward and upwards!

[mstimc]

Hi Icip.  Good to hear from you!  First and foremost, please realize guilt has no value.  All it does is keep you in a cycle of despair and negative thinking.  It blows whatever mistakes you may have made way of proportion. If you make a mistake, take it as a learning experience and move on.  We all make mistakes; its not the mistake that's important, but what we do about it. 

 

10 hours ago, Icip said:

If anyone has any knowledge of other users who maybe made unwise decisions pertaining to taking medications whilst unwell/after reactions - I’d love to know of their threads, for reassurance as I am again just a tad upset and worried. I want to be able to read again.

 

I think that would be almost all of us! I made the mistake of taking another AD when Paxil didn't seem to be helping.  It turned me into a zombie so I stopped after a few days.  Anxiety  sometimes makes us make decisions that aren't good for us.  That doesn't mean we've failed or fallen back.  Its all part of a learning curve.

 

Ans I want to reassure you that you do not have permanent brain damage.  Your brain and CNS have learned to behave in certain ways in reaction to your meds, and all that take time to unwind and readjust.  An SSRI doesn't make physical changes to your brain that would cause trauma, and to put something out there to suggest it does was highly irresponsible of the person who wrote it.  You need to give yourself:

Time

Self-forgiveness

Patience 

Self-care

Respect for what you've learned

Self-admiration for the courage to keep going

 

Above all, be kind to yourself.  Treat yourself as your own best friend.  You've had some great windows into what recovery feels like.  Hang onto those when things seem dark, and rest assured you are recoverng! 

[Icip]

Hi @mstimc,

 

Thank you as ever (I feel like I've said this a lot) for the words, I read them when you first posted a couple weeks ago; they were a great reassurance.

 

I've read as much, that withdrawal/adverse reactions are hard to remember in hindsight for anything other than the emotions, and feelings felt through the period - this I think made trying another medication (within reason) more permissible, whilst deepening the dread felt from the reminder of how hurt, and unstable our NSs really are. I was feeling that, and struggling with it whilst writing my last post. It's funny to reenter a place you had thought you'd left, and be forced to re-come to terms with it, and its effects on your life.

 

I can somewhat happily say that I'm a lot better - I had a few weeks of 'crashing', with enhanced eye strain/blur, inability to concentrate, and an awful, awful fatigue, though, as of recently it has seemed to have 'evened out'. I still don't feel like i'm in a place of relative stability which I found myself 3.5 years after my initial reaction, but I'm close, and as it's only been a month since i 'tried' lamotrigine - I'm quite happy about that.

 

I still have pretty bad brain fog. Writing this is a little bit of a strain (it was a bit better, before last Saturday; I was at a close friend's wedding, and had some wine, haven't drank since and I think I will avoid it going forward).

 

As for the actions that you listed; as I mentioned before, it's odd coming back into the known - it feels a little almost like I've travelled back in time, becoming a younger version of myself, but with the knowledge of one much older. As such, life still moves on! I'm still working (though I've reduced one or two responsibilities that made me tired prior to a month ago), and I'm somehow managing to be more active than ever with my friendship circles. They always have been, and continue to be whether they realise it or not, my greatest avenue of joy - one that puts all of this to the back of my mind, until I start worrying about my empty feeling head that is.

 

A lovely reframing of my reaction, and I guess most antidepressant-related ailments, of course depending on severity, came through a friend of mine, from my work, he quoted a passage from the bible where Paul mentions the 'thorn in his side', to describe an ill, or condition that no-one apparently knows of, which binds him again apparently, to being humble and meek in his life. Whilst I'd love to know my true potential at now, 23, it's a nice thought, that it's just a thorn, and whilst causing some discomfort; it does not have to define me! Or us!

 

Thank you for the reassurance, and reaffirmation. This entire process has helped me to reflect on how I was even a year ago - whilst I've had little in the way of symptom retreat in the way of my eyes, or tinnitus; I feel able, capable, at least until last week my anxiety/reactivity had greatly receded. I was closer than ever to feeling 'whole', and like my full self again, rather than the patchy correspondence of screaming cells that had bound together just to get themselves through University. I feel a bit reduced again now, my inner voice is a little quieter, and less nuanced (sleepy), and I as a whole am generally sleepier. I guess this is ok though. It's the memory problems, and brain fog, that worry me the most.

 

Thank you, and I hope all is well with you?

 

Icip.

[Icip]

@KenA,

 

Hi Ken, thank you for your words. As ever I'm glad to see that you're a mentor now on the site - I guess, well done, and thank you for being there for site members. I'd love to reach a place where I can help consistently, and thoughtfully on here; maybe one day:)

 

Icip.

[Icip]

Hi!

 

Just a little update as it’s late here in England + I’m v sleepy.

 

I’ve had a funny past few months - I’ve finished a years internship, and have been in a period of waiting to start a postgraduate course in my city, staying with my parents until then. I don’t think my ocd has been this bad since very early 2021/generally over the pandemic not so immediately post-reaction; since my little hiccup back in April, worse obsessive thoughts + anxiety (somatic or not) spikes have become more fluent in my life.

 

as well as the worse anxiety, that has formed itself as slightly worse dpdr, brain fog, dizziness, and light headedness - I’ve been having hot flushes? Which are completely new. I no longer (post-hiccup in April) can stomach coffee, which is a shame - with pretty horrible dizziness + malingered feelings erupting from withdrawals for days far past the last day of its consumption.

 

I am a lot better than even a month ago, generally. Far better than in late-April. I just seem to have far worse, and more broadly reaching anxiety; over everything. I’m going to start taking supplements again, Coq10, and I think Niacin (I’m going to have to have a bit more of a look into this) after just reading quite a nice post on their efficacy. I’ve taken Coq10 before in 2020; it seemed to help.

 

A little part of me has felt shut off in some ways - like there’s a bit of me, whether emotive or not that’s been trapped for the last few months. I’ve found it hard to articulate worries, or thoughts, lacking words that maybe I once had, or the clear mind to put them forward. I think I’m just stressed.

 

I read a pleasant success story earlier, a guy healed after having a lot lot of symptoms after six months; including eye sight issues - it’s made me feel a little better being even three years, and 11 months post-reaction.

 

For the sake of it, I’d like to include this too: I’ve started regularly reading books again, I’m about to finish Never Let Me Go, by Kazuo Ishiguro - it’s beautiful. Whether this is a point of which I’ve healed to, or rather the reemergence of an always possible habit. I love it.

 

House hunting is horrible,

 

Icip

[Icip]

It’s also a weird thought that I’ve been ‘blogging’ my life for the past four years now? A nice one, despite the circumstances.

 

I’ll add now that I started a relationship on May 11th this year - we’ve been together since then. In August having a little holiday in Bath, then meeting my parents in the countryside, and then up to Edinburgh Fringe. I’m seeing her next weekend, I’m happy.

 

my life isn’t all misery as maybe I let myself believe, and how I express that on here. I’d take the above as a marker for my healing, as much as life living alongside the upset.

 

Icip

[Icip]

All of this brings this song to mind:

 

 

 

maybe less than actuality - more of a feeling!

[mstimc]

12 hours ago, Icip said:

It’s also a weird thought that I’ve been ‘blogging’ my life for the past four years now? A nice one, despite the circumstances.

 

I’ll add now that I started a relationship on May 11th this year - we’ve been together since then. In August having a little holiday in Bath, then meeting my parents in the countryside, and then up to Edinburgh Fringe. I’m seeing her next weekend, I’m happy.

 

my life isn’t all misery as maybe I let myself believe, and how I express that on here. I’d take the above as a marker for my healing, as much as life living alongside the upset.

 

Icip

Great post, Icip! Looking back, even at its worst, I had some very good times when I was in WD and recovery.  The same negative thinking that causes us so much grief also makes us think everything is dark and terrible, when its just...life. 

 

Thank you for positing and updating us, and thank you even more for giving members who are just startling this journey a glimpse of what they can achieve.   Keep us updated!  Best of luck with your new relationship as well!

PS. We'll be in the UK late next year, and Edinburgh is on the list!

[ShadowDancer]

Hey ICIP

My question to you is did your visual snow/symptoms ever got any better at all like your tinnitus did or did they stay the same?

Is your tinnitus coming from your head or from the ears? how loud is it?

Thank you..

[AmitV]

11 hours ago, ShadowDancer said:

Hey ICIP

My question to you is did your visual snow/symptoms ever got any better at all like your tinnitus did or did they stay the same?

Is your tinnitus coming from your head or from the ears? how loud is it?

Thank you..

 

I'm eager to hear from icip also. I have visual snow syndrome with tinnitus. 2 different tinnitus. One from the left ear and another from the head.

[Icip]

Hi @ShadowDancer, and @AmitV,

 

Re Visual Snow, and Tinnitus:

 

Both have gotten a lot better, and represent in symptomology relatively equally; they're both unnoticeable for around 85%-90% of the time, only becoming noticeable if I drink alcohol, when I wake up, or if I'm stressed. The VS remains fairly the same, with only photophobia (light sensitivity) worsening if any of these factors are to blame. My tinnitus is gone for the most part, and only reawakens when any of the aforementioned factors are accountable. I'm in a pretty stressy state now, at university, and struggling with housing in my City, so both photophobia for me, and tinnitus are noticeable.

 

I'm not sure to what extent you have read my thread - I had a little mishap playing with Lamotrigine in April of this year, resensitising myself quite badly in the process. Before this, my tinnitus was hardly ever noticeable/for the most part, gone, and my VS whilst still there, was never noticeable, had become a part of my life that I very much so accepted (to the same extent as a blurred vision, in the early hours of the morning after waking).

 

I get tangible migraines, during which symptoms worsen, as I have now, with headaches, blurred eyesight, photophobia, and brain fog.

 

My tinnitus mainly comes from my left ear - it's a glitchy slight woosh (think waves) kind of noise. It varies in loudness, if I'm relaxed (rare), happy, and have a rested nervous system, it is undetectable, then if I'm stressed, have had alcohol, caffeine, or am in any semblance of a wave, it's there - but easily forgettable. Even when it's loud, four years after my reaction, I don't really ever notice it.

 

I hope this answers any questions, I'm sorry that it's not more well thought through, I've a particularly foggy head right now! It might not be completely what you want to hear, but you get used to it, regardless of if it dampens or lessens. It becomes normal, not that It's always there, and I'm aware of it, and it's normality, but in that I forget that it's there. In forgetting, and not paying attention, my brain renders it non-existent to an extent. It might as well as gone.

 

I hope you're both okay, thank you for stopping by,

 

Icip

[AmitV]

On 11/25/2023 at 9:13 AM, Icip said:

Hi @ShadowDancer, and @AmitV,

 

Re Visual Snow, and Tinnitus:

 

Both have gotten a lot better, and represent in symptomology relatively equally; they're both unnoticeable for around 85%-90% of the time, only becoming noticeable if I drink alcohol, when I wake up, or if I'm stressed. The VS remains fairly the same, with only photophobia (light sensitivity) worsening if any of these factors are to blame. My tinnitus is gone for the most part, and only reawakens when any of the aforementioned factors are accountable. I'm in a pretty stressy state now, at university, and struggling with housing in my City, so both photophobia for me, and tinnitus are noticeable.

 

I'm not sure to what extent you have read my thread - I had a little mishap playing with Lamotrigine in April of this year, resensitising myself quite badly in the process. Before this, my tinnitus was hardly ever noticeable/for the most part, gone, and my VS whilst still there, was never noticeable, had become a part of my life that I very much so accepted (to the same extent as a blurred vision, in the early hours of the morning after waking).

 

I get tangible migraines, during which symptoms worsen, as I have now, with headaches, blurred eyesight, photophobia, and brain fog.

 

My tinnitus mainly comes from my left ear - it's a glitchy slight woosh (think waves) kind of noise. It varies in loudness, if I'm relaxed (rare), happy, and have a rested nervous system, it is undetectable, then if I'm stressed, have had alcohol, caffeine, or am in any semblance of a wave, it's there - but easily forgettable. Even when it's loud, four years after my reaction, I don't really ever notice it.

 

I hope this answers any questions, I'm sorry that it's not more well thought through, I've a particularly foggy head right now! It might not be completely what you want to hear, but you get used to it, regardless of if it dampens or lessens. It becomes normal, not that It's always there, and I'm aware of it, and it's normality, but in that I forget that it's there. In forgetting, and not paying attention, my brain renders it non-existent to an extent. It might as well as gone.

 

I hope you're both okay, thank you for stopping by,

 

Icip

Thank you for writing back. As I read your signature about symptoms that have gone. I’m like holy crap!!! I had all of those. I was recently diagnosed with drug induced Functional Neurological Disorder. Neuro said no meds, just trauma therapy and rehab.

[ShadowDancer]

I'm sorry to hear about your problems @Icip

 

I have Insomnia, headaches, tinnitus, hyperacusis, tensor tympani and full blown VSS/Hppd. Some muscle twitching that coems and goes, some body heat regulation problems that comes and goes.

I can barely function.

 

I need my ear problems to be gone along with afterimages and light sensitivity. But I can't do anything about anything unless the insomnia resolves or gets better.

 

For tinnitus, there will be some potassium channel opener drugs coming out in 3 years. Codenamed BHV-7000 and XEN-1101. waiting for those to come out and help with tinnitus.. 

 

For the visual symtoms, I heard lamotrigine works for some people but others reported bad side effects from it too, since it also touches serotonin. And ups the HCN2 currents, which may exacerbate your tinnitus.

 

Keppra apparently helps for some people. I want to try it but the things I heard about its withdrawal and side effect profile, insomnia and irritability, makes me want to wait a few years before I even try. But seems safer than Lamotrigine.

 

If all goes well, maybe the potassium channel openers will help with visual problems too, lamotrigine blocks sodium channels, meaning it blocks the brain from hitting on the gas, and BHv7000/xen1101 opens potassium channels, hitting on brakes and permanently stabilizes the resting potential of the neurons, should be safer than the alternatives but they are 3 years away.

 

Those are my last hopes at getting my life back. I hope I can survive long enough to either heal from my problems or for the drugs to come out and help me.

 

Also to anyone reading my post, do your own research on these drugs and do not take it as medical advice, consult a doctor before trying these meds at all. Because there may/will be heavy side effects.

[Icip]

@mstimc

 

Hi! I've been having a bit of a tricky time with my OCD as of the past few weeks - I don't think it has ever 'spiked' so acutely. It's ranged from worries over my relationship, to my studies, over my own morality, and as of today onto something that I wondered if you would be able to share any thoughts/experiences/sentiments over.

 

I was visiting a friend earlier today, and sat in his large kitchen/dining area alongside his family, chatting for forty minutes or so. His Father was polishing silverware (they're v old-school!) with brasso (solvent-based polish) around three or four metres away from me. Throughout the duration, i did feel a bit funky, though reasoned with myself that this was just anxiety, and had one single little 'ache' pulse feeling in my head as I got up to go for a walk with my friend outside.

My nose has felt very very slightly irritated. I've got into a bit of an existential funk over damage, marginal solvent poisoning, or whether this has caused some form of irreparable damage that may dramatically alter my life-course/make me stupid.

 

Since my reaction, my OCD has reverberated around this theme, to an extent that I have started to understand it as PTSD, over anything more typical of me. I'm exhausted, tired, upset, and I just would like a break - a part of me wishes that I could revert back to yesterdays worry, that today never happened, or that I had acted in the moment when I had been so nonchalant and 'this is fine' in its duration.

 

Has anything like this ever happened to you, in being exposed to solvent/fuel fumes (sorry this is the reassurance side of my query), how have you dealt with persistent, or strong 'episodes' of ocd in the past? Again, I don't think I have ever quite had such strong episodic intensity in my life-long owning of this illness. Right now I feel foggy headed, a bit spaced out, and a little generally 'off', which I know are my general panicked symptoms; it's just hard to now equate them to something more, and much more scary.

 

Thank you, and I'm sorry if this is a bit of a dump,

 

Icip

[AmitV]

9 hours ago, Icip said:

@mstimc

 

Hi! I've been having a bit of a tricky time with my OCD as of the past few weeks - I don't think it has ever 'spiked' so acutely. It's ranged from worries over my relationship, to my studies, over my own morality, and as of today onto something that I wondered if you would be able to share any thoughts/experiences/sentiments over.

 

I was visiting a friend earlier today, and sat in his large kitchen/dining area alongside his family, chatting for forty minutes or so. His Father was polishing silverware (they're v old-school!) with brasso (solvent-based polish) around three or four metres away from me. Throughout the duration, i did feel a bit funky, though reasoned with myself that this was just anxiety, and had one single little 'ache' pulse feeling in my head as I got up to go for a walk with my friend outside.

My nose has felt very very slightly irritated. I've got into a bit of an existential funk over damage, marginal solvent poisoning, or whether this has caused some form of irreparable damage that may dramatically alter my life-course/make me stupid.

 

Since my reaction, my OCD has reverberated around this theme, to an extent that I have started to understand it as PTSD, over anything more typical of me. I'm exhausted, tired, upset, and I just would like a break - a part of me wishes that I could revert back to yesterdays worry, that today never happened, or that I had acted in the moment when I had been so nonchalant and 'this is fine' in its duration.

 

Has anything like this ever happened to you, in being exposed to solvent/fuel fumes (sorry this is the reassurance side of my query), how have you dealt with persistent, or strong 'episodes' of ocd in the past? Again, I don't think I have ever quite had such strong episodic intensity in my life-long owning of this illness. Right now I feel foggy headed, a bit spaced out, and a little generally 'off', which I know are my general panicked symptoms; it's just hard to now equate them to something more, and much more scary.

 

Thank you, and I'm sorry if this is a bit of a dump,

 

Icip

hey icip both you and I have the same thing, drug toxicity inducec functional neurological disorder and ptsd. Unfortunately, the longer you ignore it, symptoms begin to stack one top of another. 
 

I highly encourage mind-body therapy such as the brain exercises on the steady coach YouTube channel and learning to befriend your symptoms. 
 

if you have any childhood trauma or past traumas. EMDR or IFS therapy will greatly help reduce your symptoms. Even eliminate visual snow syndrome and tinnitus.

[mstimc]

9 hours ago, Icip said:

@mstimc

 

Hi! I've been having a bit of a tricky time with my OCD as of the past few weeks - I don't think it has ever 'spiked' so acutely. It's ranged from worries over my relationship, to my studies, over my own morality, and as of today onto something that I wondered if you would be able to share any thoughts/experiences/sentiments over.

 

I was visiting a friend earlier today, and sat in his large kitchen/dining area alongside his family, chatting for forty minutes or so. His Father was polishing silverware (they're v old-school!) with brasso (solvent-based polish) around three or four metres away from me. Throughout the duration, i did feel a bit funky, though reasoned with myself that this was just anxiety, and had one single little 'ache' pulse feeling in my head as I got up to go for a walk with my friend outside.

My nose has felt very very slightly irritated. I've got into a bit of an existential funk over damage, marginal solvent poisoning, or whether this has caused some form of irreparable damage that may dramatically alter my life-course/make me stupid.

 

Since my reaction, my OCD has reverberated around this theme, to an extent that I have started to understand it as PTSD, over anything more typical of me. I'm exhausted, tired, upset, and I just would like a break - a part of me wishes that I could revert back to yesterdays worry, that today never happened, or that I had acted in the moment when I had been so nonchalant and 'this is fine' in its duration.

 

Has anything like this ever happened to you, in being exposed to solvent/fuel fumes (sorry this is the reassurance side of my query), how have you dealt with persistent, or strong 'episodes' of ocd in the past? Again, I don't think I have ever quite had such strong episodic intensity in my life-long owning of this illness. Right now I feel foggy headed, a bit spaced out, and a little generally 'off', which I know are my general panicked symptoms; it's just hard to now equate them to something more, and much more scary.

 

Thank you, and I'm sorry if this is a bit of a dump,

 

Icip

Hi Icip

Oh yes this has happened to me many times about all sorts of real or imagined exposures.  First, let's do a reality check.  You were exposed to an odor that triggered your OCD and may have irritated your nose for a short period.  But think about the guy doing the polishing--nothing bad happened to him.  I've actually used Brasso barehanded a few times.  It has a definite funky smell but in such small amounts its not going to hurt you, especially since you didn't actually handle it. Its far more likely your nose was irritated by something in the air or the cold when you went for a walk. 

Remember, with OCD, thoughts are not reality.  Its not the Brasso, its the need for your anxious/OCD mind to find something to worry about.  There were times when I was in WD and recovery when I literally found myself thinking "Okay, I solved this crisis--what's next"?  Anxiety and OCD need a constant state of agitation to survive.  

 

Ruminating on the wish to just "be normal" adds to the anxiety, because then your mind starts creating false narratives that everything was okay yesterday or a few years ago, but now its awful.  But a few years ago you were faces with other everyday problems and they didn't affect you.  Think about all the things you do today--do you worry the light switch will shock you when you turn on the lights?  Do you worry your house will suddenly collapse?  Of course not!  Your OCD mind has to find something to worry about or it loses power over your thoughts.

 

One tool that works well is focusing on "doing what I came to do."  You went to a friend's house to enjoy a little company--that was what you came to do.  Someone using a small amount of silver polish 14 feet (never got my head around metric) away did not and will not pose a threat. When the OCD thoughts begin to creep in, tell yourself "I came to the store to buy groceries, not to worry about catching a disease from the shopping cart handle". 

 

Ask yourself how many times you've worried about something and it either 1) didn't happen or 2) happened and it wasn't a disaster, or 3) you looked back and realized how silly it was to worry about it.  Putting the anxious thoughts in some perspective robs them of their power. It takes time and practice, but being mindful of where you are what you came to do is a good place to start.

 

Let me know how you're doing!

[AmitV]

On 12/12/2019 at 10:16 AM, Sassenach said:

Hi Icip

 

It is your decision.

As you will see from the links I sent you two months is outside the normal period we would recommend for reinstatement but has been done successfully.

Are your symptoms more or less severe than one month ago?

Your baseline is not a short period but a moving average during your stabilisation, ie three steps forward, two back.

As long as the overall trend is positive you will get better.

I cannot tell you when as we react differently, but we do get well.

You need to focus on distraction and acceptance techniques, please see

https://www.survivingantidepressants.org/forum/8-symptoms-and-self-care/

 

Keep in touch and if you experience any major uptick in symptoms let us know.

 

All the best.

 

Sassenach

That’s correct distraction and acceptance will be very helpful. 
 

the ocd you so speak of is hypervigilance that accompanies ptsd. Trauma therapy will benefit too.

[Icip]

@mstimc

 

Thank you for such a carefully penned response, and I'm sorry that you have had to do this on Christmas Eve no less.

 

This I think has very much so been a case of, "what's next?" - I'd finally the evening before 'put something to rest', so to have another, much more violent question over my own competency/humanity (as I feel questions over brain damage are for me), has just been horrible.

 

I was in their large kitchen area, sat around quite a big table with the Father (Brasso-user), his wife, step-daughter, and my friend. He kept making remarks of, "oh these fumes are making me hyper", which didn't help. The Father seemed himself, watched TV afterwards, said he was tired and then went to bed. Everyone did seem fine, and my friend is usually hyper (has just started ADHD medication). I was in the room with them for around 40 minutes, with the window being opened after 15/20 - I was uncomfortable though I can go into a 'freeze' mode, not feeling like I can act on, nor verbalise my unease. The whole room smelt; it wasn't incredibly overwhelming, but very noticeable!

 

Everything that I've ever hyper fixated on, or worried over has always passed; this for some reason, as they each and always do, feels the most 'real', a tangible situation of exposure where I felt a little funny whilst going for that walk. Part of my worry is that I'm the only person, or atleast University student that this happens to. A lot of my fears revolve around yes, further irreversible/significant damage, and then any affects that may hinder my ability to complete University well.

 

I'm just not sure what to believe - I know that I'm fine rationally, it just feels as if there is a block stuck in the forefront of my mind that refuses to leave, that won't let this issue, or the fear leave. It's impossible to talk, or rationalise it away, and yet it's impossible to ignore. Can I ask if you got over each of your 'real' exposure instances, and if any were similar to mine?

 

I feel a lot better for reading your post, so again, thank you - I'm having windows (heh) of calm, and acceptance that I'm okay, with spikes throughout the day. I was ok for quite awhile earlier trimming my dog's hair (my Dad who I don't see very often lets her ears get quite matted!), but now in trying to sleep, I've spent the past two hour reading journal reviews into acute solvent toxicity. Most saying that small-exposures pose little to no worry (ad lib), but none fit my situation, and none talk of Brasso directly. This is exhausting mstimc, I agreed with myself last week that I would seek therapy in the new year, I haven't so far as our National Health Service has little to no capacity for funded Therapy. I've managed to find a therapist with specialisation in OCD, as well as acquired brain injuries, functional movement disorders, as well as adjustment to life with a disability/chronic illness, in my City.

 

I hope yourself, and your family all have a wonderful Christmas, wherever you're celebrating - are you up to anything specific or a little more lax after your years of travelling?

 

Icip

[mstimc]

12 hours ago, Icip said:

@mstimc

 

Thank you for such a carefully penned response, and I'm sorry that you have had to do this on Christmas Eve no less.

 

This I think has very much so been a case of, "what's next?" - I'd finally the evening before 'put something to rest', so to have another, much more violent question over my own competency/humanity (as I feel questions over brain damage are for me), has just been horrible.

 

I was in their large kitchen area, sat around quite a big table with the Father (Brasso-user), his wife, step-daughter, and my friend. He kept making remarks of, "oh these fumes are making me hyper", which didn't help. The Father seemed himself, watched TV afterwards, said he was tired and then went to bed. Everyone did seem fine, and my friend is usually hyper (has just started ADHD medication). I was in the room with them for around 40 minutes, with the window being opened after 15/20 - I was uncomfortable though I can go into a 'freeze' mode, not feeling like I can act on, nor verbalise my unease. The whole room smelt; it wasn't incredibly overwhelming, but very noticeable!

 

Everything that I've ever hyper fixated on, or worried over has always passed; this for some reason, as they each and always do, feels the most 'real', a tangible situation of exposure where I felt a little funny whilst going for that walk. Part of my worry is that I'm the only person, or atleast University student that this happens to. A lot of my fears revolve around yes, further irreversible/significant damage, and then any affects that may hinder my ability to complete University well.

 

I'm just not sure what to believe - I know that I'm fine rationally, it just feels as if there is a block stuck in the forefront of my mind that refuses to leave, that won't let this issue, or the fear leave. It's impossible to talk, or rationalise it away, and yet it's impossible to ignore. Can I ask if you got over each of your 'real' exposure instances, and if any were similar to mine?

 

I feel a lot better for reading your post, so again, thank you - I'm having windows (heh) of calm, and acceptance that I'm okay, with spikes throughout the day. I was ok for quite awhile earlier trimming my dog's hair (my Dad who I don't see very often lets her ears get quite matted!), but now in trying to sleep, I've spent the past two hour reading journal reviews into acute solvent toxicity. Most saying that small-exposures pose little to no worry (ad lib), but none fit my situation, and none talk of Brasso directly. This is exhausting mstimc, I agreed with myself last week that I would seek therapy in the new year, I haven't so far as our National Health Service has little to no capacity for funded Therapy. I've managed to find a therapist with specialisation in OCD, as well as acquired brain injuries, functional movement disorders, as well as adjustment to life with a disability/chronic illness, in my City.

 

I hope yourself, and your family all have a wonderful Christmas, wherever you're celebrating - are you up to anything specific or a little more lax after your years of travelling?

 

Icip

Merry Christmas!

 

Yes, I did have the same kind of fears, and I did learn how to manage them.  Part of ERP (Exposure Response Prevention) is to give yourself room to say "Its okay to feel okay."  One way to do that is by telling yourself "I'll wait 20 minutes before I research my latest symptom/fear/reaction". See how you feel after 20 minutes and if you can make it 30. 

 

We all know how dangerous the Internet can be in affirming our worst fears.  If you want to find something bad, you will.  When I was dealing with severe health anxiety, I researched symptoms and always found something horrible. Then I'd go see the doctor and he'd tell me it was something minor that would go away by itself.  When I got home, I'd look up the doctor's diagnosis and find it was far more common than whatever exotic disease I thought I had. 

 

Brasso is common cleaner that's been around for decades. I suppose if you snorted it or drank it, that would be bad, but if you use it for the purpose its intended, as your friend's father did, its harmless. 

 

I know how real these fears can be.  Give yourself a break and accept that feeling good is alright and nothing bad will happen if you accept you're okay. Brasso won't make you stupid. You don't have brain damage and you will do fine in university.  Remember doing what you came to do.  You're in university to learn and possibly support a future profession. You're not there to fail or develop an obscure mental disease.  Accept that. for the moment, these unreasonable fears will come, but they mean nothing.  Its just a habit your brain has developed, and with a little mindfulness and reality grounding, they will pass.

 

[Ashpashley23]

Hi @Icip

 

Can I ask how your dpdr is these days? I had an adverse reaction 10.5 months ago and this is my worst symptom - it’s been 24/7 and very debilitating. Basically when this goes I will consider myself 85% healed. Just curious about others who have had it as badly/as long, and had it go away. Thanks!

[Icip]

Thank you @mstimc,

 

I read this on the day of you sending it, and it immediately brought me a bit of calm; you're right. It's still on my mind, as something that ti feel compelled to disprove, or move away from - it usually just takes a bit of time, time realising that my abilities are the same, that I can talk to people in the same way, and in some cases hearing stories of other people.

 

I've spent quite a few sleepless nights looking on forums, reading stories of Chemists/doctoral students accidentally 'huffing' solvents, and feeling dizzy after, or students in a lab, getting headaches from solvent exposure: all worse than what I had experienced, and yet - they're fine. I'm finding, and I always have (though I'm just slightly more cognisant to it now) that my mind makes up facts. I'll for a while say, start to believe that I felt inebriated, dizzy, lightheaded, or off, when I in fact felt fine, if not a bit anxiety-brained from worrying in the moment, and freezing.

 

My Father being a carpenter had a spray shop when I was younger - I spent a countless amount of time around his factory, in there with him, he and I both not wearing masks (oops) as he sprayed vestiges of furniture. I studied Product Design for seven years, too; I remember quite a large beeswax polishing session I had between myself, and a lamp that I was assembling. I'm finding following these paths that I've laid for myself in obsessions-past, quite humbling. I've not had this kind of immediate-fear for a while, which makes it easier to see, and notice.

 

My worry stems from, an incident like this not being normal, that it's isolated, and has only happened to me. As I'm coming to realise, in a similar fashion to the very fabric of having an adverse reaction to a psych med: something so inhibitory, discreet, and unfashioned that will only affect you, and your own performance at 'life'.

 

Thank you mstimc, and I'm sorry that you have been through all of this before. I've come to label it internally as immediately more disabling than any of my concurrent adverse reaction symptoms; as much as the OCD was kindled by my reaction, and my OCD now continues to kindle my CNS and prevailing symptoms. The notion of, "it's okay to be okay", is one that I've self-circled around my brain at times of distress, and in the mornings when bad thoughts are often invited back to my conscious - I've found it empowering, in bringing me to the moment, sensing myself, and how I feel now - that now I am fine; I have always been fine, so I will continue to be fine.

 

I struggle to comprehend how simple these affirmations are, and yet how totemic they can be over OCD.

 

How has your Christmas been, and how have you spent it? Have you already been to Edinburgh, or is that a trip still yet to be!

 

Icip

[Icip]

Hi @AmitV,

 

Sorry for not getting back to you sooner- I've just wanted to properly process the above before speaking/sharing thoughts! Since you had first mentioned FND; I've seen it in and around a swathe of literature that I've been reading's s well as commonly in a couple of place. I'm curious, and I will bring it to my GP, or in after seeking an appointment with my neurologist; I'd like a check-up!

 

Therapy seems like the most obvious route of treatment for me, for my somatic symptoms as well as mental - in times now past, even a 1.5/2 years after my reaction, I had a couple of months of calm, untriggered, and periods of good healing. This went in hand with what felt like at the time to be a dramatic reduction in my symptomatology - I yearn for this again, and in reading FND symptoms of being largely somatic, and linked to awareness, I saw parallels.

 

I'm going to try my hardest to book an appointment with my GP in early January; I'm moving houses over the next couple of days so hopefully I can go into it with a clearer, and less materially travelled mind. I'm thinking of going at it from a: 'I've already been diagnosed/have had all of the tenets of FND observed by various practitioners - would you agree that it looks like this' end, I did the same before receiving as Visual Snow Syndrome diagnosis, as my neurologist was then unaware of its existence as a diagnosis. I'll share anything I get back after!

 

Icip