Freaked

I have this all the time the last month, visual disturbances and bad light sensitivity. No idea what's going on. Docs say it sounds like migraine but I only had one bad headache. Had a normal ophthalmic exam.

Thanks for the replies; reassuring to know this feeling can happen with POTS. I think I may have figured out what was going on, or as much as you ever do with POTS. Often I get very breathless after dinner when my blood pressure drops, but weirdly the opposite happened. My BP went to its healthy level and I could breathe again. I think I'd been going *way* too long without eating in the mornings for a few days. I just can't tolerate a 14+ hour gap between meals I suppose; I should have known better.

I was a very calm person pre POTS, though always prone to palpitations if I overdid the coffee or cigarettes. And I have crazy genetic hyperhidrosis, so it is possible my sympathetic nervous system was always out of whack, but I'd never had a panic attack or been prone to anxiety. Can't say that now. This thing has terrified me and lowered my tolerance of stress to zero. But I was on benzos for a while so I got to see exactly what was mental, or at least adrenaline-related, and what wasn't. 'Collateral' symptoms were better on the benzos. I found it easier to eat and had less (not none) pains, breathlessness and sweating, when i wasn't standing. Whenever I did have symptoms, it took a lot more for them to scare me. But the basic standing symptoms were the same. So that at least gives me something to say to any doc who doesn't know about POTS and thinks it's some weird form of anxiety.

The last few days my blood pressure has been higher than normal (about 100/75-130/85 or so) and I've been horribly short of breath. I can barely move or breathe and my chest is tight feeling (but my oxygen is fine). I'm only 22, normal weight and I had an echo at the start of my symptoms 11 months ago, but I swear it feels like my heart is failing or something, though i don't seem to have any fluid anywhere at least (touch wood). But it's horrible and I'm afraid being so sedentary and housebound the past year has done something bad to me. Has anyone else with POTS or hyperpots had this? Is it just a weird adrenaline issue maybe, making me feel like I can't breathe?

Thanks for the replies! My pupils don't seem to be dialated at the time, and I don't think it's the usual orthostatic blacking out of vision either. I've also been getting a lot of blue flashes and severe after-images. Just generally freaky stuff and it's really set me back mentally, and it's making me afraid of exerting myself physically. Waiting for a follow-up headscan atm (for a pineal cyst).

For the last three weeks I've been getting an area of vision loss at the bottom of my left eye when I stretch or strain or sometimes bend. Had an ophthalmic exam and apparently my eye looked fine. Docs are saying migraine (I had one episode of pain a week ago) but would that go on for three weeks? I'm only 22 and no particular risk factors but worried being housebound with POTS for the last year and my poor circulation have given me a clot or something. I also have bad non-headache pain and tenderness in my face, head, neck and shoulders, though the vision loss doesn't seem to exactly correspond with pain episodes. I'm going crazy with worry even though I had a clear headscan in May. Anyone else get this?

A psychiatrist told me my tilt-table results were from 'lying in bed'. Never mind that those exact symptoms were what made me become inactive in the first place and started very suddenly. But he was a scary guy.

My reaction to it could almost be described as allergic. I was on it for two days and my blood pressure and heart rate both went bananas (high). But I never really heard of anyone else react that badly. For most it seems to help low BP and lightheadedness, but not heart rate.

So I had an EEG today. After two nights of basically no sleep. The flashing light was horrible. The girl said a lot of people don't even let her finish it. I made it to the end but broke out in a flush and smelled smoke and then had a weird taste in my mouth for like an hour. Those are all things i get occasionally when my POTS gets bad, but apparently they're all symptoms of seizure aura too so now I'm scared. Anyone else without epilepsy react badly to the lights?

I've had certain symptoms always such as hyperhidrosis and jaw/chest/neck pain when I run, but my proper POTS came on very suddenly as I started to come down with a bad flu. Docs said my crazy heartrate was just viral, and it did improve after the flu was gone, but it didn't recover completely and I had to walk everywhere at the speed of ninety year-old. Eventually it became difficult to even walk around the house.

The last week I've been getting vision loss in the bottom corner of my left eye, especially when I bend over, stretch, blink and bear down. I've also had weird nerve stuff going on - frequent vasovagal reactions to my heart rate when I strain, and neck, shoulder and head pain, particular on the left. Some head pressure too. I've also been very dizzy; this could be my vestibular vertigo cos my ears are blocked, but it's adding to my freaking out. Had the back of my eye looked at in hospital, and apparently it looked fine. But I'm terrified of aneurysm. Went to the doctor today, and he didn't know that unruptured swelling aneurysms could even cause symptoms, so that wasn't very helpful. He thought maybe my dysautonomia was giving me minor artery spasming. I also have prominent burst blood vessel in my eye where I'm getting the vision loss, so don't know if that's related. I wonder about occipital neuralgia, which can cause the stuff I've been getting, but would that come on more with straining? I don't even have an anti-anxiety to take the edge off this fear. Has anyone else had visual disturbances like this?

A trip to an ophthalmologist and neurologist might be in order. But I get weird visual stuff too. Lately I've been getting disturbances in my left eye, in one segment in particular, especially when I bend over or bear down which is pretty freaky. But apparently the back of my eye looked normal and I had a head scan in May that was basically okay. I have pain and tenderness in the left side of my head, sometimes triggered by swallowing and things, so I'm wondering if my problem is occipital neuralgia brought on by my neck/shoulder problems on that side.

A neurologist scheduled an EEG for me a while ago, but he thought it was very unlikely to be abnormal. I haven't really had any fit-like symptoms (touch wood). So I was wondering what they're like? The letter said they'd have to scratch my head thirty-two times and stick electrodes to it. I have very thick hair and I'm worried they'll have to shave loads of it. Also, how 'difficult' is the test for potsies?

That sounds great! I wish there was research in my country I could get involved in. I'm sure they'll find some useful information!

It is very scary. Last time it happened to me I was in the car with my friends up the mountains, totally freaking out cos I was going numb and couldn't tell at all how fast my heart was going. Majorly freaked out. Turned out I had a temperature, typically.

What you're describing sounds exactly like reflex anoxic seizures. Anyone mentioned those? Worth asking about. http://www.stars.org.uk/patient-info/conditions/ras

This happens to me, in my wrists in particular. Also, I discovered that sometimes when you're having a POTS episode, you can't actually feel your pulse sometimes, but other people can. One time I pushed myself too hard and my heart was going about 150, felt like I couldn't breathe, the usual, and I couldn't feel my pulse at all. But when my friend tried, she could feel it easily. The nerves in my hands were obviously messed up at the time from my breathing or adrenaline or whatever, and I don't have neuropathy or anything.

Thanks, hopefully it is migraine. The vision stuff and nausea (and worse orthostatic symptoms) started happening a few days ago though. Has anyone had auras go on that long? Or is it just that this flare up caused those symptoms and the headache independently? I'm so confused. Also, my neck/shoulder on the left get very sore and have been bad the last few days, and I have a sensitivity on my scalp on that side. So i was wondering about occipital neuralgia. Anyone have that? I really need a new doc (again); last time I saw mine she said she had no idea what to say to me cos she knew nothing about POTS. Pretty sure she thinks I'm nuts. And my specialist is a cardiac electrophysiologist; the neurologist I got to see didn't consider autonomic dysfunction to be something he could do anything about.

Not too often, just a few times. Tbh I think I've had fewer headaches than before I had POTS, but they've been weirder and scarier. And now I have a temperature which is making me feel shivery and awful, in spite of paracetamol. Dysautonomia is so great isn't it :-/

Hi, thanks for your replies. An opthamologist dialated my pupils and looked at the backs of my eyes, and said there was no swelling or inflammation. Yeah they suggested migraines and I have gotten some weird apparent migraine stuff since I've come down with POTS. Had a head scan last May that was fine. Just scary feeling this way.

Had to go the hospital yesterday cos I kept losing vision in part of my left eye, worse if I bent over or beared down. They said everything looked normal. But now I've got a headache and feel really dizzy and almost like my speech is thick. It's horrible and I'm terrified of an aneurysm.

Thanks for the replies! Great to know I'm not alone. Unfortunately, things have gotten worse. Had to go into the hospital due to a visual disturbance. Everything looked fine, but I seem to have terrible vagus nerve stuff going on today. Every time I strain at all, my heart starts doing slow pounding and I get very dizzy. Feel awful

Thanks for the replies everyone! Good to know I'm not alone in that. Yogini, this would be staying in the same spot, during a 'POTS attack'.

I've been having a bad POTS time the past few days. Nauseous, sweaty, can barely stand, weird visual stuff, and to top it all the occasional horrible skipped beat. You know the kind where it feels like you can't breathe for a second, you wonder if it will actually go back to normal again, and you can feel your heart scrunching and it sort of hurts? Ever get those? They scare me. Anyway, these days really depress me cos it brings me back mentally to the days when I felt awful all the time (as opposed to recently when I've mostly just been symptomatic when I stand). And my parents are so used to me feeling bad that they have very little sympathy or patience with it anymore, as if I can just snap my fingers and be better. Sorry, needed to vent :-/

I've developed an exaggerated startle response since I've had POTS, worse sometimes than others, due to my high adrenaline issues. Stimuli such as flashing lights make me feel a lot ickier now than they ever used to, but then even feeling excited in a positive way often makes me feel bad. I just have a low tolerance for anything stimulating. An overactive sympathetic nervous system can cause a lot of weird problems. Trying to be calm mentally can't help beyond a certain point, but freaking out certainly makes things worse. It's difficult to find a doctor who understands the distinction.