u/notsickenough

Hey everyone, so I don’t know if I’m just paranoid and having an anxiety spike because of the meds or if this is actual cause for concern. If you don’t want the extra details and background skip to the bottom for the TLDR.

Exactly as the title says, I know Reddit is not a replacement for medical advice etc etc. (mods don’t worry I know)

I am going to contact my dermatologist via the patient portal message feature to let her know what’s going on regardless of this post. But I also knew I wasn’t going to get a response at 11pm on 4th of July lol.

So I have fibromyalgia, and my migraines get to be at an incapacitating level at points. I’ll feel like my head could explode, nauseous, dizzy, and yes at times vision changes (like blurring). Which are all overlaps with ICP from everything I’ve been reading.

I’ll preface this by saying I have waited 20 years to get on this medication, so I am trying to be very sure of my symptoms and side effects here.

Greatest fear my whole life has been going blind (career and hobbies all surround physical art- painting, drawing etc.) so I would be devastated. And as I said I’ve waited two decades to get on these meds (insurance barriers, money, other health issues etc) and I have horrible acne that actually triggers my migraines (shows up over lymph nodes and pressure points) plus this has been a struggle for me for a long time.

Nothing has ever worked topically, or orally with otc or prescription. So accutane really is the final line of defense here and I really want it to work and for me to be okay. I finally have my chance at good skin and now I’m getting paranoid about ICP from Accutane.

I started my first dose of Accutane Tuesday evening, and I ended up having an episode last night. And I say episode because it could be one of my shitty FM migraines or the ICP that everyone warns about.

I genuinely cannot tell the difference because automatically the anxiety set in because of the horror stories of ICP and going blind etc. even if it’s only a 1% I could be that 1% of people. And on the other hand, I desperately want this to work because I’ve barely just started and I would be devastated if it just had to permanently be discontinued and my chance was over before it ever started.

So I guess I’m looking for any insight on CLEAR DISTINCTION BETWEEN THE TWO THINGS. I know that is hard because there is quite some overlap but ya girl is struggling between the anxiety/fear of “fuck around and find out” and the grief of “this is what I’ve wanted for my entire adolescent and adult life don’t take this from me”.

So I’m very back and forth because normally I can trust my gut even when I’ve been on deaths door I have known my body very well even when it was issues I had never experienced before (I know it’s weird) but I also know accutane can affect mood as well, hence the anxiety portion (I’m not really an anxious person by default but I’ve experienced anxiety like everyone else in life)

I am trying to stay calm and not jump the gun but also not ignore something that can potentially be permanently damaging to my health.

TLDR & Relevant Facts:

•I have fibromyalgia, migraines, tinnitus and vestibular issues. My migraine etc. symptoms overlap with intracranial pressure symptoms (head pressure, vision changes, eye pain, nausea, dizziness, ringing in ears)

•I started taking 20mg Accutane BID 5 days ago (Tuesday, PM) (5’1” and 167lbs shh working on it lol)

•Yesterday I did kind of poorly with hydration and nutrition until a little later the afternoon

•I was indoors and out of the sun/heat because both fibromyalgia and accutane

•Episode in question lasted less than an hour, felt longer because I panicking

•Episode accompanied by: head pressure (right side and top of head mostly which I’ve had before) mild burring vision (also regular FM symptom for me)

•My pupils reacted normally to light when I checked them

•After checking them I felt almost instantly better (the reason I’m questioning if this was anxiety making a FM migraine escalating to a psychosomatic problem)

•No worsening with positional changes, and my tinnitus didn’t “pulse” with the head pressure

•I skipped my dose last night because I was too afraid to risk making it worse in case it is ICP

•I woke up feeling absolutely fine aside from mild nausea (normal for me even before accutane)

•Husband was a trauma specialist for 8 years, reassured me that the pupil thing is a good sign (did also see that it doesn’t necessarily mean you don’t have it, just means it’s less likely)

So I’m sure you all see why I’m worried. This could be very serious but I’m seeing so much conflicting information and it’s hard to calm down about it (I think also anxiety may be from the meds!) so any input on distinguishing would be helpful.

Again regardless of this post I’m going to make my doctors aware. I just wanted to know if I was overreacting before jumping in the car to go to the ER or urgent care (would be so embarrassing if I was fine)

Hello! So, I’ll try to keep this short, with as much relevant info as I can.

I have fibromyalgia, and sometimes get weird headaches or migraines where it’s hard to describe the sensations since they can vary but: pressure in my head, “numbness” in my head, vision changes, nausea, dizziness, tinnitus, and basically all the symptoms are nearly identical to increased intracranial pressure.

I just started Accutane Tuesday evening, and I’ve noticed pretty much all the side effects from the Accutane are similar or feel like they amplify or trigger my fibromyalgia symptoms.

So I’ve been having a very difficult time distinguishing between the two but especially with my weird fibro migraines vs ICP. Because I know ICP is no joke, and I had an episode of some of what i described above earlier and it came and went. But also literally my only fear for myself is going blind so I obviously don’t want to shrug it off like it’s nothing. And of course, today is a major holiday and it’s late at night where i am. I’m stressing about it and I guess I’m just wondering if there’s any way to get a “if it this or that” here at home before I start ringing the alarm bells.

I saw something saying that if your pupils still react to light normally it means you don’t have it. Then I saw something else that says you can still have it if your pupils are okay so I’m not sure what to believe 😭

If any of you kind people can lend some deeper insight it would be much appreciated, especially since I’ve just been on a rollercoaster of emotions since the episode earlier and I’m so anxious I can’t just trust my gut right now. And I also didn’t take my night dose yet because I’ve been too afraid just in case.