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

[AmitV]

1 hour ago, Icip said:

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

these somatic exercises will be quite helpful. Just use it for your symptoms. 
 

You can also look into vitamin b3 niacinamide for mental calmness from PTSD. 
 

https://ctz.dk/vitaminb3/ptsd/
 

I wanted to share the link below, perhaps you can see yourself in overmethylated or under methylated group. Overmethylated group react really badly to SSRI or anything that increases serotonin. 
 

just something worth reading.

 

https://mentalhealthdaily.com/2015/03/21/undermethylation-vs-overmethylation-causes-symptoms-treatments/

 

i know FND is not fun. I have PPPD, VSS, balance problems and massive ptsd from SSRI. 

[mstimc]

3 hours ago, Icip said:

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!

We were in Edinburgh in late 2021 and have plans to return to the UK, including Edinburgh, in November-December 2025 to enjoy the Christmas season.

 

Its all about perspective.  Your mind wants to find the reason your body is telling you to be worried, so you start scanning for something to worry about. It can be exposure to Brasso. Or it can be obsessing one some supposed terrible mistake you made at work. What you don't think about is the 99% of your life you live every day without thinking about it: you can fall down the stairs at home and break your neck, or slip on ice (well, not me since I live in L.A.), or you can go to the store while its being robbed and get shot.  There are a million things to be afraid of every day, but our rational mind knows they are highly unlikely. Then the irrational anxious mind finds that one thing, blows it completely out of proportion, and tell you "Yes!  This is it! This is something to fear and worry about and research and seek multiple reassurances that it's okay." And once you resolve that crisis, your anxious mind searches to the next Big Thing. That's when you say, "No, I'm not going to let this be the thing today.  Brasso is so common my whole neighborhood would be dead if its was dangerous."  I do woodworking and there are any number of ways I could hurt myself if I wasn't paying attention. But I practice common safety measures and focus on my work--it was actually very therapeutic when I was in recovery because it requires absolute attention. And its creative, so its a positive activity.  Despite all my other OCD-fueled fears, I was never afraid the blade on my table saw would fly off and kill me or I'd cut my fingers off because my rational mind was in control.  

Fears are just thoughts that are out of control.  You can manage them with time, practice, and self-forgiveness.

[Icip]

Hi all,

 

Just a little update: it's been a tiring past few months - from when I last posted, my OCD continued to be quite bad, and while gradually abating over a number of weeks, and months, I'm still in a continued 'flare up' rut. I'm exhausted all of the time, I've been struggling to wake up before 11am, regardless of what time I reach bed (I usually try for 11pm/12am), and then through the day I find that I have one task within me, before I start to feel a bit lightheaded, dizzy (migrainous), and weak.

 

I have found that my caffeine tolerance has reached zero. I can't have one cup within feeling a tad buzzed out of existence, irritable, and mentally displaced in a way that will not let me focus, nor pursue recreational leisure in a way that I otherwise would at the end of the day, and especially when not feeling entirely tickety-boo. I can't describe the level of fatigue; it does not feel natural, or achieved, but nervous, and artificial in a way that I remember well from being in the midst of my reaction. I think from my little hiccup earlier last year (almost exactly a year ago) sensitising myself quite badly from Lamotrigine, and a prolonged period of stress, and worry, I have put my nervous system, and self in a much more precarious, vulnerable, and delicate place.

 

Whilst in most cases, I feel the best that I ever have done (post-reaction), in terms of cognitive abilities, the much lessened extent of my derealisation + all uncomfortable feelings that followed it, and my regained sense of 'just being me' that I found was my duly longed dial of normalcy.

 

Worsening: light sensitivity, increase in persistent floaters (when before there have at times been none), systemic sensitivity to caffeine that not only affects anxiety, but also nervous features, loss of energy, and an all-consuming weakness that I am currently finding limiting. These features ignoring caffeine sensitivity, remain months sober of coffee/any caffeine. I have been stringent with my intake at times, and on days where I have felt bad sober - I have found that a cup of caffeinated coffee has made me feel better? It makes no sense to me, I had this earlier last year for a month or two.

 

Improving: my feeling of being 'normal', alive, and present; I don't have the language to express this appropriately, other than the alien, sick, and deathly feeling that followed my reaction, and myself for years post-it. It's close to being gone (would not want to speak too soon). Derealisation is a lot better, though I think accompanying my visual snow/migraine issues, I still have a general (so so minute) air of disconnection. My ability to be conversational, and relaxed within this - I have, over the past couple of weeks, had some of the best conversations of my life, and whilst I realise that this not the most quantitative measure of recovery, it feels real, and tangible to myself; I had a particularly beautiful one on Liz Truss (for British/UK SA users!), and childhood trauma (connect the dots!) that expanded well beyond this, with a new friend who has a similar upbringing to myself.

 

Thank you to anyone reading these; they serve as a discursive account of my experiences within illness for others to view, and as a bit of a writers outlet for myself. Even as a University student, feeling especially stifled creatively through hobbies, or within my life in general - I have found that the only metric for expression that I currently hold, is one for the emotional turmoil of my reaction. Writing about it feels so pure, and liberating; I've been in my head a lot today concerning my capacity, taking four hours just to leave bed, make breakfast, get dressed, and leave the house. Relativising, and medicalising it keeps me grounded.

 

Life is good, and manageable. Even when I said a few years ago in the summer of 2021 that I felt close to being myself; I did not. I was still struggling with connection, feeling grounded on a more neurological level, brain fog, and residual feelings of illness. I feel so fortunate to be where I am now, and I am appreciative for, and excited by the prospect of many more years of healing both of my nervous system's dysregulation, and trauma that I have accrued from this experience.

 

I am sure that it shows, but even writing this has made me oh so sleepy! I've still another 500 words of an essay to write + an email to my regional mayor to request an interview for my dissertation, + a research ethics application for said interview(s), AND apply for a policy thinktank internship in London with a deadline in two days - yuck!

 

ICIP

[Icip]

@mstimc,

 

Thank you, for the entirety of what you had said to me in late December - I was feeling quite stuck, and a bit in crisis after the culmination of quite a few very stressful months had started to weigh down on me. I read this at the time, and I have read before that offering reassurance isn't the best way to go about dealing with someone else's OCD - though a large part of my worries are that I am the only person going through this, that this is abnormal, and it only happens to me because [XYZ]. Like with what I had said above, relativising it + becoming more aware that this is very normal, even for people that I look up to has a destructive effect on my fears. I feel safe, say if my partner were to do something that I would otherwise be a little shaky of - though I am aware that this does not treat the underlying fear of something only happening to me, that outwardly seems safe, and not atypical (I wonder where this fear comes from!).

 

That's some future thinking, I'm not sure if I have ever been in a place to think so far ahead! You are certainly choosing the most beautiful city in the UK to spend Christmas in. I had a friend who spent their time studying in Edinburgh, and made her way through half of a Masters before becoming quite grossly unwell - I don't think of the city without thinking of her!

 

I do hope that you are well, you come to mind a lot!

[mstimc]

Hello from California!

Thank you for the kind words.  I'm glad I was able to help.

Interesting thing about floaters...I was bothered by a perceived increase in them a few years ago and saw an ophthalmologist.  She said they tend to increase with age (yay) but also with perception.  They really never go away and the only treatment is some kind of laser procedure that runs the risk of burning your retina. Unless there's a sudden increase in them, they're harmless, but annoying.  Eventually, your brain learns to ignore them and eliminates them from your field of vision.  I notice mine more when I'm looking at something with a light background. Maybe your still-heightened anxiety isn't allowing your brain to start the process of ignoring them.  At least you know they're not serious--but they are very annoying sometimes. 

 

IMHO, OCD never completely goes away. Like any other chronic condition it can flare up at any time.  But it can also be managed and we can have perfectly normal and happy lives.  There's nothing "wrong" with us anymore than you'd tell someone with diabetes there's something wrong with them. Just as a diabetic's body processes sugar differently, our minds process some thoughts differently.  When it flares up, my ICD tries to convince me that this time, the thoughts really are about something real and terrible. I have to remind myself I've been wrong 100% of the time; that even when something negative happened, I could handle it, and its never as bad as I thought it would be. 

 

The fact you are seeing improvement in some areas should tell you recovery is happening, just maybe not in ways you expect and not as fast as you'd like. But it is coming. Don't think in terms of days, but look back in months or years and you'll see how much progress you've made.

 

You are on the path to recovery!

[KenA]

Hey @Icip  Sounds like you are seeing some improvements and things are heading in the right direction  Slow and steady wins the race my friend!! 

[upsideDown]

Hey @Icip, new here (and for the record wish I wasn't)

 

I recently tapered off fluoxetine over a few months and was then encouraged to go back on it. After I started developing palinopsia and strong blue field entoptic phenomenon.

 

You had some ppl mention that the visual symptoms went away eventually. Reading your story has brought me some peace that I can get through it, but I'm scared and angry. I feel like I dipped my toes into the water of antidepressants and picked up a permanent visual damage, just trying to do what was best and trust my doctor.

 

I would love you to tell me that your visual symptoms went away, but ultimately if you could encourage me that things will get better could be helpful as well. I mostly just wanted to ask how you are doing I guess.

 

Thanks for the information you put in the forums. 😊

[Icip]

Hey @upsideDown,

 

Firstly, I'm so sorry that you have had this experience - the feelings that you have right now, especially concerning eye problems are very normal. I felt particularly haunted by them for a while, when they were especially bad.

 

Sorry if this reads as awkward - I'm having a bit of a stressy time with work so my head is a little foggy: as far as my reading suggests, a lot of people with standalone palinopsia have had this go away in its entirety. I had strong blue field entoptic phenomenon, too - and despite my static sticking around, this went away entirely for me, too.

 

I suspect that my case of antidepressant-related eye issues is permanent. I have quite a lot wrong with them, and where I have read of people with eye issues to my extent, I have yet to read of them getting completely better. Though, it does not sound like yours are like this.

 

Some advice that I clung onto whilst struggling, and this I think applies regardless of your chance of recovery/symptom cessation is that, the symptoms are only frightening because they are new, and over time our brains become accustomed to any sensory alterations within our body (e.g. a lost limb, or! a change in sensory organ). It took around 16 months for me to be able to go a day without at all noticing my eyesight symptoms (namely the static), much sooner before, I began to not be so affected/scared of them. I wanted to say this just in case, but again, from what you have said - these symptoms should go away. Just taper slowly, avoid triggers like stress, alcohol, and caffeine (caffeine can make my eyesight worse, amongst other things), and you should be ok.

 

I am okay, I still have though lessened visual static, blurred eyesight, and double vision. Palinopsia, photophobia, BFEP (blue field), changes to the contrast of my eyesight, and my floaters have all gone for me, thankfully.

 

You may also field that some people, friends, or family, may even experience your visual symptoms to the same extent as you, and that is normal for them. I have friends who have heavy BFEP and claim that they have always had it, friends with floaters, and who are by default very very sensitive to light. My partner, and even my ex-girlfriend both have/had visual static, very heavy visual static. Though neither had ever questioned it (before I told them about it, whoops!). I know that I did not have it before my reaction, which is what made it harder at first.

 

I probably think about it as much now, as my partner.

 

Please do shoot me any other questions, or anything at all - I'd be happy to talk/answer anything!

 

ICIP