upsideDown: Fluoxetine and visual snow, entoptic phenomenon

[upsideDown]

Hey all. New here. Found this site from reddit.

 

Visual snow is ruining my life.

 

I could use some support and advice. 

 

My story: 

 

In 2020 I went through a bit of a hellscape (nothing in comparison really) where I was in tears regarding my health. I've always had trouble with health anxiety but it really flared in 2020, right before the pandemic. The nurse practitioner was really kind in a lot of ways and offered to put me on an antidepressant. She chose Prozac based on a Google search (red flags?) of side effects, I was having GI issues at the time and it listed less than the other she considered. 

 

I had thought about ssris for a while. Being adverse to drugs ever since a parent misused one I didn't think they were for me. But as anxiety wore me down, I thought that maybe I should give it a chance. I had no idea the world of hurt that opening this door would cascade into my life. 

 

For a few years I had success. I talked to my doctor about going off and he encouraged me not to (PNW he said his experience with tapering in winter was bad, wait for spring). So I did. And next summer I went to make an appointment. Six months wait time. -.-

 

So I thought how hard can this be? I googled it. Looks like 4-6 weeks is recommended, and Prozac especially is 'easy to come off of'.

 

Now you see where this is going, but you're actually wrong. I had no issues I saw in the first four months coming off.

 

The next part gets tricky. I started having daily terrible stomach pain. It spiked my anxiety and I was constantly in the doctor. Specialists booked out 6 months again. The doctor ordered tests. Then I was told it was IBS. Tried this, tried that. I contacted the doctor a lot, and providence offered me some virtual appointments with providers as that was a lot faster than waiting for PC, and my health anxiety was through the roof.

 

One of the providers strongly encouraged me to go back on Prozac. I didn't love the idea. Even when I picked up the prescription I looked at the bottle and decided not to take it.

 

I wish I had dumped it down the toilet.

 

My 'just do it' attitude won me over the next day. I thought that it's worth a try. Worst that can happen is that I come off of it for bad symptoms. Big mistake.

 

Nothing happened immediately. A few days later I was headed to work and got distracted by the sky. I looked up and the sky glittered like gold.

 

Oh ****. What is happening. 

 

Google informed me that the blue field entoptic phenomenon is perfectly normal. Then I found visual snow. What ensued is the worst period of my life. The bfep began to haunt me. I would journal and the other page glittered like a dragons horde. I would walk for my sanity and see a thousand stars in a cloudy day. Nowhere I go doesn't sparkle. Then I noticed it was hard to be outside, the sunshine hurt my brain. Another time I was with my partner and realized that I could see two treelines. The wall now has spots that aren't the right color. Occasionally I'll see a blob of discoloration. I went to the store and I couldn't read the cans in the soup isle. The letters I could make out but the visual stimulus hurt me in an inexplicable way.

 

The health anxiety quicky took me to poundtown. Why did I do this to myself? Is there a solution? Desperation led to days of reading reddit forum posts. This is where I am today.

 

Now that I know that this is a misunderstood condition, often lasting lifetimes with no real effective treatment, I just want out of whatever hell I put on myself. I want to go back to character creator and chose a different character. I want to play a different game. 

 

I'm trying everything. I talk to parents daily, hoping that they stick around for a while (they're in their 70s with lots of health conditions). I've seen three eye doctors, a neurologist, a sleep doctor, a surgeon, a nutrionalist, a dry eye specialist, a physical therapist, a vision therapist, several PCP providers and nurse practitioner, and I'm going to an EMT, sleep doctor and nuero opthalmologist. I'm also doing intensive outpatient therapy through charlie health.

 

My symptoms:

Neck pain (improved)

Lightheadness (comes and goes)

Stomach pain

Visual discomfort

Constant minor tension headache

Vision ghosting/double vision constantly

1 second occasional palinopsia

Afterimages that mostly distort colors

Blue Field entoptic phenomenon. Everywhere. Everywhere, I can't state this enough I can only escape this in low lighting.

Flashes of light when I transition from dark to light

Light sensitivity

Muscle twitch constantly

No concentration and reading is weirdly uncomfortable

 

I spoke to PCP about coming off and he supports that as soon as I have the surgery. Early next month most likely.

 

Crying on the floor. This is me now. It has been for several weeks. I've lost count of how many times I've cried. Crying on the floor I'm waiting for a call back to schedule an appendectomy surgery as I'm told that I have acute appendicitis and all I can think about is that I don't want to do anything anymore. I'm in a bad place. I think I need to believe I can get better and that this isn't all that there is for me.

[Erimus]

Hello, and welcome to Surviving Antidepressants. We are a peer support forum to assist in tapering off psychiatric drugs safely, or recovering from psychiatric drug withdrawal.

 

Your first task is to create a drug signature, with the following:

 

• All current medication you take, the dose you take, when you started the drug, and when you made dose changes
• All current supplements you take
• An accurate history of recent drugs, taken in the last 12-24 months
• Dates for recent should be written as 7 Oct 2023, or Oct 7 2023, or early Oct 2023, or mid Oct 2023
• A history of drugs taken 24 months ago and beyond - if applicable
• Dates for historical drugs can simply be listed as start and stop years
• Please do not use 07/10/23 // 10/07/23 as this is intepreted differently around the world

 

• Please leave out symptoms and diagnoses. See my signature for example of clear and concise information.

 

• Click this link to edit your signature: Edit your signature here.

 

 

This topic is for anything relating to you, and any questions you have. Please do not start another topic.

 

We recommend tapering by no more than 10% of your CURRENT dose each month, to limit withdrawal symptoms. E.g. 10mg --> 9mg --> 8.1mg --> 7.29mg

 

All the answers you are looking for regarding tapering and antidepressant withdrawal are on this site. Please search around and continue to read as much as you can manage. Use the site search function to search for specific words or phrases, such as drugs or symptoms.

 

Here are a few of the most useful links:

 

Important topics in the Tapering forum and FAQ

 

Micro tapering

 

Why taper by 10% of my dosage?

 

Taking multiple psych drugs? Which drug to taper first?

 

How to make a liquid from tablets or capsules

 

Using a scale to weigh and measure doses

 

We only recommend two supplements. Omega 3 Fish Oil and Magnesium. Both should be introduced separately and increased slowly.

 

Regards

Erimus

[Erimus]

22 hours ago, upsideDown said:

I spoke to PCP about coming off and he supports that as soon as I have the surgery. Early next month most likely.

 

Crying on the floor. This is me now. It has been for several weeks. I've lost count of how many times I've cried. Crying on the floor I'm waiting for a call back to schedule an appendectomy surgery as I'm told that I have acute appendicitis and all I can think about is that I don't want to do anything anymore. I'm in a bad place. I think I need to believe I can get better and that this isn't all that there is for me.

Fill in your drug signature as I've described above. I can't suggest doing anything further until you've had the appendectomy. Keep reading and abosrbing the information available on the site, and prepare yourself for tapering.

[upsideDown]

Thanks for the info. I updated the timeline. I started noticing symptoms in Feb and then more when I went back on the Prozac. God I wish I hadn't done that.

[upsideDown]

Can you link if there are others who's visual symptoms subsided after a while? I can't bear the thought of living with these symptoms forever.

[Erimus]

On 4/13/2024 at 9:05 PM, upsideDown said:

Can you link if there are others who's visual symptoms subsided after a while? I can't bear the thought of living with these symptoms forever.

Use the site search function to search for specific words or phrases, such as drugs or symptoms.

[upsideDown]

My doctor is alright with starting tapering in two weeks, but he wants to go straight from 20mg to 10mg, what is your recommendation specifically for prozac? I'd like to go faster than slower but also slower than a straight halving. 

[Erimus]

17 hours ago, upsideDown said:

My doctor is alright with starting tapering in two weeks, but he wants to go straight from 20mg to 10mg, what is your recommendation specifically for prozac? I'd like to go faster than slower but also slower than a straight halving. 

Please read the information I provided above.

 

Here are a few of the most useful links:

 

Important topics in the Tapering forum and FAQ

 

Micro tapering

 

Why taper by 10% of my dosage?

 

How to make a liquid from tablets or capsules

 

Using a scale to weigh and measure doses

 

You have to do your own research and educate yourself on best practice for tapering. We recommend no more than 10% of your current dose each month.

[mstimc]

Hi @upsideDown. I had terrible health anxiety when I was in WD as well.  You've done all the right things--having your issues checked by medical professionals, and it seems they haven't found anything serious. The hard part is accepting that and letting go of the anxiety about your health. I've bene there. I drove my GP nuts coming back for symptoms that were largely created by my anxiety.  There are a lot techniques for managing unreasonable fears, like CBT, that will decrease your health anxiety, and therefore your physical symptoms, including the visual snow. Floaters and snow can be annoying, but if you've been checked and the doctors said you're okay, its more likely anxiety.  A lot of people--including me--have floaters, especially as we age. Normally, our brains learn to ignore them and they disappear from our field of view.  But your anxiety may be forcing you to focus on your visual issues instead of letting them fade away. 

[upsideDown]

@mstimc 

I have floaters, but my vision also now has a hundred little flying dots whenever I'm in bright light. I can see the floaters float past them, all together obscuring what I'm actually looking at. It's quite overstimulating, and I don't think they're the same thing. I'm 30 and I've noticed floaters since I turned 21, but this I didn't used to experience and now it's every time I walk outside, and it has been this way for over two months now.

 

I really don't think that is normal, personally.

 

All that said I really appreciate your words. I'm starting to believe that a lot of my feelings are depression related to the symptoms. I can not feel this way if I can simply accept that my sky is full of gnats now and the feeling of hopelessness and dp/dr will hopefully go away.

 

That is entirely easier said then done though. I'll have a day where I accept and the next I'm angry again that I did this to myself or a doctor decided to suggest it.

[upsideDown]

Another week has passed. Recording my thoughts will probably help me process them.

 

I'm doing alright I guess. I wake up and lament how broken I feel now. Afterimages are worst in the mornings and unfortunately I can't escape them. BFEP continues to make me feel accosted outside. I toured a wedding venue and couldn't help but feel like a hundred flying gnats were flying at me. The vistas were beautiful, as hard as it was to see them behind a sea of distortion. 

 

I feel scared for the future, still. Between chronic constipation, twitching, appendix pain, ear ringing, bfep, afterimages, knee pain, jaw/neck pain it feels hard to point to a part of me that is functioning... well. Time feels cruel, constantly expressing me to further symptoms. Healing on all accounts feels slow if not nonexistant. At least Monday I won't have my appendix problem again. 

 

How do I break the belief that change is a bad thing, that I've broken myself irrevocably permanently? Not yet do I feel comfortable in my own skin again. But I'm also not grieving 24/7 anymore. Grief waxes/wanes and lately it's been receding. 

 

Yesterday was perhaps what is referred to as a window. I'm not tapering the antidepressants, but visual snow tends to take a large portion of headspace 24/7. I had stretches where I did not think of it and enjoyed playing Dragons Dogma 2, perhaps 30 minute timeframes.

 

I guess that's something. 

[mstimc]

Hi Upside

Your post is a classic sign of anticipatory anxiety. You're scared of the future and fear change. Your anxious mind is creating a future that doesn't exist yet, complete with catastrophic consequences.  One of the definitions of anxiety is that we live in the past and the future, but never in the present moment. We replay all the mistakes and bad things from our past, and we build elaborate stories about what will happen, all based on fear.  Think back in your life--I'm sure you've had negative experiences but you handled them, even if it was just a flat tire or a erroneous charge on your credit card.

 

90% of the things we fear never happen, and we handle the 10% that do. Try replacing fearful thoughts with positive affirmations. Instead of "What if I have all these physical problems when I wake up tomorrow,"  try "I get another shot at healing tomorrow, and maybe a symptom or two will be better". You'd be surprised how powerful affirmations can be if you keep practicing them. 

[Erimus]

On 4/20/2024 at 5:37 PM, upsideDown said:

Between chronic constipation

You might try high dose vitamin C for the constipation, after you've recovered from the appendectomy. You have to gradually increase it, though, rather than jumping straight to 4000mg at once. I found it helped when I my digestive system wasn't working well.

 

Hope the op goes alright.

Edited April 22 by Erimus

[upsideDown]

Thanks @Erimus.

 

Operation went as good as the nurse said she's seen! No adverse affects from the drugs either. Just have to wait out some pain, doing most anything hurts right now. My stomach looks like a warzone but it's only temporary. Anestesia seems fun afterwards, when you don't remember a thing.

 

Turns out I did catastrophize. The operation was pretty easy. Recovery is going to be a b****, I'm finding difficulty standing and pain 24/7, but my partner took time off to ... check my notes... help me get out of chairs and into other chairs and feed me 😅 I'm very lucky for the support.

 

I'm still most excited about getting off this stupid Prozac poison pill. My new belief is that I shouldn't have been prescribed it.

 

It's curious that much vitamin c helped but I'm willing to try a lot of things at this point. I'm stuck with laxatives to have anything resembling normal. I guess that's life sometimes? I found a great post on Reddit I might follow to try and narrow the issues down more: https://www.reddit.com/r/ibs/s/PWk1sgrpAx

 

[upsideDown]

Here is my first pass at a tapering schedule, each would be separated by 2-3 weeks

 

1 - 15 mg

2 - 10

3 - 8

4 - 7

5 - 6

6 - 5

7 - 4.5

8 - 4

9 - 3.5

10 - 3

11 - 2.5

12 - 2

11 - 1.5

10 - 1

decrease by .1 now

[upsideDown]

I got the okay from my prescriber to taper using this schedule. He was strangely okay with it for previously being somewhat a stickler on doing this slowly. I'm going the fluid route.

 

The pain of the appendectomy recedes 😊 and I begin to be able to bend over again! Thank the stars.

 

More worrisome is the fog. The fog of war against illness. My responses slow, my processing lapsed, my vision obscured.u Functionally I have lost nothing. Or, barely something. Occasionally I wonder if this really was what my vision was like all along.

 

But I'm sure things are different. At night, what was once near perfect black is now mottled blue/black. Snow I don't see at daytime comes to life dancing a rhumba of blue and black, shifting like sand. Patterns are beginning to make me feel ill. Light can be pain. Objects remain in my eyes after closing for several seconds. I constantly wonder if the snow lurks in the shadows of my daytime, peering at me from behind bookshelves and corners. Seeping into my awareness. My gratefulness in avoiding daytime snow starts to blur as hypervigilance continues to pull the strings of my curiosity and worry. Is it worse today? Will it be worse tomorrow? Have I always struggled to see my hand with the lights off in the dark? Am I seeing a spot in my vision, just momentarily? This spot that is only in my peripheral and seems to come and go at its leisure. It just ever slightly obscures things like text. I managed at one point to recreate it predictably but only in specific light.

 

Am I going mad or simply aging? Sometimes I'm not sure which direction I'm walking, and if I will emerge still miles away from my destination. Is visual snow (from antidepressants) the cause of my vision strain? I never used to have daily eye strain, but now I feel it from the moment I wake up (it's not strong) and it increases to a dull ache and then a strong ache. I've been a computer programmer for years, with little to no issue in this regard.

Night ointment seems to be my only sword to wound this particular evil, as the ointment seems to stick around as a lubricant for the next day as a kindness. But even armed with a visual therapist, these ointments, eye drops, exercises, breaks, walks, and hot compresses, I still cannot use the computer without noticing eye strain every few moments, with increasing ferocity as the day goes on. Yes it's almost the only thing I do all day. But is it normal for a switch to turn and one day feel symptoms all the time?

 

Nothing I can point to in my life prepared me for a years, possibly lifelong healing journey that I gear up for regarding my vision. I almost don't care about the acute appendicitis, the constipation, the sleep apnea or the psoriasis. It's the strange unknown disorder of visual snow that hides behind the curtains. The disturbances hidden underneath reality. If anything was going to make me believe in a spirit realm, this would be it.

 

I do hope this all goes away when the medication is gone from my system. It's at the top of my want list by a football field. By the distance to the moon. But that's just not where I am. Sometimes I see the snow at night and it scares me. Even with my eyes closed. 

 

Is how this affecting me noticable? Maybe only to me. Self compassion, compassion, compassion.

 

Easier said than done.

[upsideDown]

More improvement with the stomach! If anything the visuals are worse. Could be due to the antibiotics from the surgery, could be stress, could be anything really. 

 

I'm going to stop saying that I hate visual snow, even though that's how I truly feel. I guess if I feel that way forever than I might hate a part of myself for an unknown amount of time.

 

I just wish this wasn't happening, I'd trade a lot for it. I have to have a lot of compassion with myself and what I can actually accomplish now. My energy is still way down.