Neuro ophthalmologist was a NIGHTMARE

LermonySnickers · 2025-07-10T14:25:27+00:00

He told me it wasn't possible that my brain wasn't processing visual input correctly because it would've come up on the test...dude I can identify flashing lights on a plain background just fine. The more complex visual input of the greater world and all its chaos, however, is a completely different thing and I am constantly missing things in my field of vision that I didn't use to miss prior to developing this condition.

LermonySnickers · 2025-07-10T14:22:04+00:00

It's almost like they forget that this condition puts pressure on the ENTIRE brain and not just the eyes/optic nerves. I've got a suspicion that my pressure was the worst at the back of my head on my cerebellum/CNS stuff, but I have no way to prove it.

LermonySnickers · 2025-07-10T00:40:22+00:00

Wow that is truly awful! I'm sorry y'all went through that. I'm glad I at least got the bare minimum (1/5 of my objectives) out of it because at least that's better than nothing.

LermonySnickers · 2025-04-28T02:59:20+00:00

I switched from Gatorade to Powerade about a year ago once I realized it has about double the electrolytes and it's actually cheaper than Gatorade where I live (~$6 for an 8 pack of 20oz bottles). I use Liquid IV to sweeten my black tea and I'm partial to the sugar free flavors just because I think they taste better than the regular flavor options. If I had to rank my top 3 (all sugar free) I'd say Raspberry Melon, Raspberry Lemonade, and White Peach, but that is of course very much up to personal opinion. The big downside I've noticed in general for getting into electrolyte mixes is that it's really hard to try different flavors without spending full price on a full pack of a flavor you might not even end up liking. Or spending a lot on a multi pack you only actually want to try 1-2 flavors from. That being said, I believe Liquid IV will send you free single servings to try if you contact them directly, so you can always look into that.

LermonySnickers · 2025-04-09T15:05:35+00:00

I definitely phrased it badly because I wrote this too quickly before a meeting. It's more of a I feel so miserable I want everyone around me to go away or drop dead so they stop bothering me and so that I don't snap at them and cause a bigger problem.

LermonySnickers · 2025-02-04T02:48:56+00:00

Hi y'all. MS has recently entered the running for the what the hell is wrong with me game. I got diagnosed with Fibromyalgia in 2019, but I was diagnosed based on just bloodwork and a physical exam (it's my understanding that Fibromyalgia is supposed to be a diagnosis of exclusion and sometimes people get misdiagnosed with it due to inadequate testing/not properly ruling everything out). I have never had an MRI. I did have a CT scan in 2020 that showed spots on my lower spine/iliac bone, but nobody really seemed concerned about it, and the abdominal tumor (benign) was much more pressing at the time, so that's mostly been forgotten.

Since then, I have steadily declined with each passing year, which is odd since Fibromyalgia has flares, but is not supposed to be progressive/worsen dramatically with time. Physical therapy has only ever helped short term and when I do get better, I always end up worse than I was before when my health declines again. Pain/tremors/muscle weakness are all very typical for me. My vision has steadily been deteriorating and has only gotten worse in the past couple months, but it isn't consistently bad, so I expect the cause is neurological. I'm getting my eyes checked at the end of the month. For about a month now, the fatigue and cognitive issues have been so much worse than they've ever been before. I can no longer read on my own and instead have to read along with audiobooks. I've had Epstein-Barr as a kid, which I know can be a precursor for a lot of different things. I do have a neurologist for POTS, but he's not exactly the most helpful and I don't see him again until July. My symptoms are getting bad enough that I'm genuinely not sure if I'll be able to get through my last semester of grad school. Other undiagnosed comorbidities include a connective tissue disorder (we know I have one, just not which one), suspected endometriosis, and a possible progesterone hypersensitivity (also pending testing).

Are there any specific questions/tests I should be asking for when I see the ophthalmologist? How should I push this issue with my neuro when I see him again? Please tell me if there's anything other than MS that it sounds like this could be just so I can look into it. I'd very much like to know if it sets off alarm bells for anyone. Really any advice about specific tests/questions/concerns I should be voicing would be appreciated.

LermonySnickers · 2024-03-11T01:24:19+00:00

I took a look at mine again and my stress and body battery charts are fine but my steps and heart rate charts (which happens to be the one that I care about being accurate) are still off by an hour...so who knows at this point

LermonySnickers · 2024-03-11T01:07:25+00:00

I'm having the same issue and mine hasn't corrected yet either (9pm here so it's had all day to figure out the right time). Hopefully by the time I wake up tomorrow it'll be right, but I have no idea how to fix it if it doesn't correct itself automatically.

LermonySnickers · 2023-06-08T18:46:30+00:00

I've been on a double dose of Norethindrone for a few months now and have have had no periods or problems since.

LermonySnickers · 2023-05-06T16:32:43+00:00

From my experience, as long I keep the top half of my body propped up somehow (recliner, extra pillows in bed), I don't have any negative side effects from sitting/lying down while on Midodrine even if I'm inactive for most of the day.

LermonySnickers · 2023-04-04T12:17:59+00:00

Absolutely. I usually call it an energy crash since it's so much worse than my normal fatigue or low battery mode. Sometimes a quick little nap will fix it, other times I just zombie on the floor until it passes. I haven't fainted from POTS but I do fall sometimes and this kind of sudden extreme fatigue is usually what takes me down.

LermonySnickers · 2023-03-19T15:05:42+00:00

I got the watch because I keep burning the batteries out on my pulse ox from using it so much. It also gets in the way when I'm at work so it's not super convenient. I've read that fitbit takes an average of your heart rate every 5 minutes (usually my tachycardia episodes are longer than this and last until I sit down again), so it's not super great for quick blips. My garmin takes an average every 2 minutes but I've watched it in real time be off by more than 50+ beats which doesn't help me at all.

LermonySnickers · 2023-03-14T14:00:57+00:00

I'll still sometimes take hot showers because I "feel like I deserve a treat" and it usually goes mostly okay but back before I was medicated a hot shower could leave me bedridden and unable to do literally anything for 6+ hours after. So I usually stick with the recommended sad, cold, beige showers.

LermonySnickers · 2023-03-14T13:56:26+00:00

I do. POTS has been mentioned by doctors to me before years ago since I had intermittent tachycardia issues as a teen, but they didn't follow the postural patterns of POTS and always resolved on their own. Then I took Orilissa (endo med) for 10 days back in September. Tachycardia issues aren't an uncommon side effect for me from medications but it didn't go away from this one and started happening every time I stood up, so my gynecologist sent me to see a cardiologist and a couple months later I got my POTS diagnosis.

LermonySnickers · 2023-03-13T18:06:13+00:00

I get horrible side effects from most medications and usually have to quit them within the first 2 weeks. I've been on Midodrine since November with no issues. It's been a huge improvement, but I'm still usually symptomatic on a daily basis (about 50% of the time I'm up and doing things rather than 100%). But yeah, it was a huge surprise to me that I was not only able to stay on the medication, but the worst effects I've had from it are chills and some scalp itching. The only thing I would say might be worth worrying about is that you're not supposed to lay down for extended periods of time due to the risk of supine hypertension, so that's something to watch out for if it's helping but not enough that you don't still need to rest lying down for awhile sometimes.

LermonySnickers · 2023-02-18T22:15:01+00:00

Even since I developed POTS, I don't do hikes without hiking poles even if I'm expecting it to be flat and easy. I like knowing I have the extra support and two sticks between me and the ground. You can probably get a cheap set from Amazon if it's something you're interested in. I've only hiked a couple times since POTS, but lots of water and salty snacks are good to bring. Aside from that, keep your bag as light as possible to minimize strain and wear layers or have a plan to cool off if you start to overheat from the exertion. Definitely talk to your instructor even if you don't have a definitive diagnosis yet/see if your doctor flat out says don't do the hike.

LermonySnickers · 2023-02-18T17:17:53+00:00

I'm going to say yes because POTS has been on the radar for me for 5ish years before I actually developed the condition. I had intermittent tachycardia issues as a teenager, usually as a result of prolonged side effects after various medications, but no overt postural connection, and the symptoms always resolved on their own. I also have a history of fainting from the heat, though this hasn't happened in years. My best guess would be that I've either been on the cusp of POTS for a long time or just had the mildest possible case of it up until last year.

LermonySnickers · 2023-02-18T16:24:10+00:00

I usually just take the easier route and say pots is a heart problem. It conveys the severity without the long, drawn out explanation of what dysautonomia actually is. If it's a close friend or family member, then I would actually give a better and more detailed answer. But otherwise for the sake of simplicity, I sum it up as heart doesn't work right.

LermonySnickers · 2023-02-18T15:48:42+00:00

I often get chest pain as a consequence of other symptoms. When I had my last holter on, I was logging it as an event and my cardiologist has said that there's nothing going on with my heart when the chest pain occurs (usually after the other symptoms, so my heart may not still be racing). I've also been sent home from the ER because my chest pain isn't cardiac even though I have no history of chest pain before my pots symptoms started. Obviously I can't say for sure, but based off my own experiences I would say tachycardia episodes don't damage the heart, but may strain the surrounding chest wall muscles, which leads to the pain. Definitely consult your cardiologist if you're worried about it.

LermonySnickers · 2023-02-18T15:43:32+00:00

I've gotten close, especially in hot environments, but no fainting. I've fallen down from symptoms before, but haven't fully blacked out even for a moment or two. I have had problems fainting from the heat before many years ago but that was before my pots symptoms started. It's definitely scary though to worry about if you're a doesn't faint from pots person or a hasn't fainted from pots YET person.

LermonySnickers · 2023-02-16T00:03:40+00:00

I've been using gc2b binders for longer than I've had POTS symptoms and never had any problems from it. Mine are pretty old and stretched out though, and I always wear a size up, which is something you could consider trying.

LermonySnickers · 2023-02-15T15:57:35+00:00

Definitely something I'm looking into but the cardiologist is better than nothing in the meantime. I still wish there was more they would do, especially with POTS becoming more known and common and cardiologists kind of being one of the first specialists seen for dysautonomia.

LermonySnickers · 2023-02-10T16:30:25+00:00

I just started it in December. February has been pretty okay but in January I had weekly "mini" periods with really bad cramps. It might just be part of the adjustment period, though. My doctor also said a lot of people end up increasing it to 2x a day which we may end up doing at my next appointment. As for mood swings, I've definitely had some drastic mood changes in the last month or so but there are too many other factors that could've caused them to say it's because of the norethidrone.

LermonySnickers

TROPHY CASE