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I get these, too. I never knew they had a name before though! Usually they come on in the middle of the night when I wake up with an adrenaline rush. I'm like Aimes, though, I have to curl up into a ball. I usually wait it out on the couch sitting up while curled up or leaning over against the back of the couch. I find ginger ale helps me through it, but that might just be placebo effect. It's my go-to drink when I get like that though. Mine last usually 1-4 hours and my shaking comes in waves, usually the worst in my shoulders, arms, and upper body. I don't think I have issues with my pupils but I have really bad floaters and several instances of visual snow each day.

POTS in Japanese is 体位性起立性頻拍症候群, pronounced "taiiseikiritsuseihinpakushoukougun," NCS/NMS is 神経調節性失神, "shinkeichousetsuseishisshin." Surprisingly, I have met several Japanese people who have heard of this. None of them really knew what it was, though. I recently found out that autonomic dysfunction has been researched in Japan since the late 1950s. One support group website says that "even though these disorders have been studied in Japan since the 1950s, they have only recently come to the attention of medical researchers in the US and Europe" (my translation). I was really surprised to read that! I'm going to have to look into this some more.

I really hate hearing stories like this and I'm sorry it's such a common experience for us. My friends pretty much ditched me when I got really bad a couple of years back. I was in grad school at the time and the department basically didn't believe anything was wrong with me. I got sympathy from ONE professor (out of about 10 I interacted with regularly). One even dismissed it as "probably just seasonal allergies" while I was undergoing testing and had zero energy to go to class. Yes, seasonal allergies often cause sudden fainting and seizures. !! It's just so ridiculous because I feel like if any of us announced we had some form of cancer, people would be smothering us with offers to help.

I had an episode of the visual disturbance like you describe, but mine lasted for probably 45 minutes and the shape kind of slowly morphed. I felt awful while it was happening, nauseous, shaky, adrenaline rush, and thought I was going to faint. I talked to my doctor about it and he just kind of brushed it off :/ I had heard about aura migraines too, but the only migraines I've had were caused by Florinef, when I took it a couple of years ago for a while. I still get the stars or "sparkles" often, but I haven't had the other type of visual disturbance in several months. I wish I knew what caused it because it came on out of the blue.

Gerrik1-- maybe you are crazy, but at least we're all crazy together! Honestly, I was really happy to see others have that experience as well.

Yes! Often it takes me a moment to figure it out, but my dreams are, and always have been, incredibly vivid, and my memories of them are often just as strong as "real" memories. It's often hard to shake the emotion I was feeling in the dream once I wake up, too. I don't take any sleep medication but I am on Zoloft and Wellbutrin (fairly low doses of each).

That is simply unacceptable. There ought to be a black list of doctors so we can all avoid situations like this that just add unnecessary stress to our lives. Is there such a thing?

Hi Starburned, I have this symptom too. I wrote a little about it in the other thread, "Please describe your brain fog." I do the same thing as you, where I try to think of synonyms, but I am bilingual and often I can only think of how to say a particular word in one language or the other-- like sometimes I have trouble forming a complete sentence in just one language because the two languages feel like they've become muddled together in my brain or something. I don't usually tend to write something other than what I mean, as you said, but I seem to make more mistakes when I'm writing since diagnosis (in 2010) and it's almost like I have a harder time making my writing look nice. It's incredibly frustrating for me because my job deals with language.

I have word issues too. I'm bilingual, but when the brain fog is really bad I will only be able to recall parts of both languages. So I'll be able to say part of a sentence in English and maybe the other part in Japanese @_@ Really simple stuff, too, like I couldn't remember how to say "because" in English the other day, but I couldn't figure out how to say the rest of the sentence in Japanese. Argh! The brain fog is one of the biggest reasons I quit grad school. I could not think coherently enough or linearly (is that a real word? lol) enough to continue to do research, do interviews, give presentations, participate in academic discussion etc. When teaching, if a student asked me a question I wasn't expecting, it was horribly embarrassing to have to stop and really think hard about a concept I mastered years ago. I used to have an incredible memory, but now it's like I can't access half of what I KNOW I used to have down pat. One other thing for me is that my dreams are incredibly vivid, often just as vivid as memories. Sometimes I'll have to think about whether something was a dream or a real memory. Ugh.

You'll need to be completely still. For me, I can walk and move around just fine, but on bad days I have a lot of trouble standing perfectly still. Also, during an actual TTT you're strapped in so that you literally can't move, so try to be as still as possible. I think for it to be POTS your HR has to increase 30+ BPM within 5-10 mins of standing/being upright (someone check my numbers please, I'm not sure). You should probably try to do it several hours after a meal so you're not getting any side effects of digestion, which can affect your HR. For my TTT when I was initially diagnosed, my HR jumped over 60 BPM within 2 minutes and I was unconscious between 3-4 mins. One thing that would help you measure is a heart monitor. You can get decent ones pretty cheap on Amazon--I got mine for about $30 and it's pretty reliable. I use it when I exercise, but I think it would also give you a clearer picture about what's going on if you try it with a poor man's tilt.

I have seized while unconscious, but not to the extent you describe, Tobiano. To me, that sounds atypical, and I would not attribute it solely to POTS or ignore it. Those symptoms almost sound similar to ones that sometimes occur with brain inflammation, including some types of meningitis.

A lot! About every 1-2 hours, more when I'm nervous or having an adrenaline surge. I was in rural TN last fall with my family building a house, and it was awful because there was of course no plumbing, and the nearest bathroom was at the only restaurant in the area 20 mins away. I just kept apologizing for my "enlarged prostate" and "being an old man" (I'm female btw ) and brought back hot chocolate for everyone as an apology for bailing on the work sometimes when I went, ha! I've had one bladder infection and it was no fun at all.

YES I am constantly bloated! It's driving me crazy! I've been trying to figure out if it's caused by certain foods or not. The only thing I know for sure is that soda is a trigger. But as far as anything else, I'm just not sure at this point. I'm trying to limit my gluten intake to see if that has anything to do with it.

Abby- I haven't talked to anyone who has done the combo I'm doing, although my doc said it has been done before. I have read on this forum that several people did well on Wellbutrin alone. At first I added 75 mg to the Zoloft, but like you are worried about, I was very jittery and tachy with insomnia and obsessive thoughts (like a broken record playing in my head that I couldn't stop). I am really sensitive to meds, though (caffeine too), so bear that in mind. I quit after 5 days at that dose and then a few weeks later the doc told me to cut the pills in half and try that, so that's what I've been doing for a couple of weeks. I had a slight stimulant feeling at first, but not nearly like before. I was a bit confused about why they wanted me to do it-- I think it's mostly to do with my weight. I haven't gained weight on Zoloft but it's like I can't lose weight on it even doing tough workouts 5 days a week. My weight is still well within the normal zone, but it's frustrating for me. I was also complaining about bloating issues and night sweats, but I don't think the Wellbutrin is intended to really help with those unfortunately.

My story is really similar to abbyw. I'm currently on 100 mg Zoloft and I am functional, I believe, because of it. I went on it first a few years ago for supposed "panic attacks" then went off about a year after that. I was awful during that time and started it back up on my own at 25 mg. Soon after I was diagnosed and my cardio stepped me up to 100 mg. I went down to 75 mg for a few months last year, but I started feeling sick again so I stepped back up. My doc also recently prescribed Wellbutrin and I've added that at 35 mg for now. They told me it would stabilize my weight, which I'm really hoping for. I don't like being on meds anyway though so I'm hoping I can step the Zoloft down to 75 mg now that I'm on Wellbutrin too. I definitely had a huge increase in anxiety and nausea when I started Zoloft. The first time I went on it, I was pretty much huddled on the couch for two weeks with nausea, adrenaline surges, and zero appetite. It was horrible, but after that initial period it really has helped me to be able to do daily activities.

How about black/gray/white to look like visual snow?

I just got over a horrible cold myself. Vick's on the chest always helps me, and I drink a lot of herbal tea (especially ginger), green tea, and chicken broth. This last time I took several different OTC meds (Advil Cold, Vick's NatureFusion, Benadryl, etc.), but the biggest thing I noticed was just getting tachy. I took two Benadryls one night to help me sleep, but they didn't knock me out. Weird. I also took vitamin C drops and zinc drops, although as SeattleRain said, I got pretty nauseous on them. I found a Chinese herbal tea specifically for cold & flu, and I believed that helped a bit. Beyond that, I can only recommend a quiet place and PLENTY of extra-soft tissues if your nose becomes a faucet like mine when you're sick. Try to walk a bit and do stretches to keep the blood moving, too.

I don't know for sure, but I wouldn't be surprised if the two were related. I've had floaters since I was a child and mine are pretty bad too. It's really annoying, especially on days when it's cloudy but bright outside.

My symptoms were just starting to get serious when I was an undergrad but I did have some issues. Sleep was a big one. I had a single room, but the noise from outside was often too much for me to get a good night's sleep. I slept much better once I moved to an apartment off campus my junior year. However, I can definitely see the benefit of being closer to classes. Unfortunately it's often just the luck of the draw as to what kind of dorm situation you find yourself in. I lived in an honor student dorm and it was one of the noisiest housing situations I've ever experienced. Oh, and definitely make sure he can have an air-conditioned place. Many of the dorms at my undergraduate school (in Ohio) did not have AC, it was awful the first few weeks of class. Some of the older classroom buildings didn't have AC either, so make sure he has a fan or cooling vest or something. One time it hit 108 degrees during one of my classes in an old building where some of the windows didn't open. No way could I do that these days. I would recommend talking with instructors before the beginning of the semester to explain the condition and try to work out some options if he gets really sick. Most classes have attendance requirements, but often professors will make exceptions for special cases. One of my biggest issues was sitting through class. I felt dizzy, nauseous, and very anxious because of the POTS. I found it helped to sit near the door and take a bathroom break if needed. It's also easier to slip out unnoticed that way if it gets bad.

I have this problem too, and sometimes it scares me because I wake up with it and it takes a while for the feeling to come back. Also, just like jenniferlynne and imapumpkin, I tend to curl up now at night. It's weird because I used to sleep on my back, straight out, with my hands above my head. But now, I'm either on my back with one leg curled up (so my legs almost make a "4" figure) and my hands under my butt (not sure why this is suddenly comfortable??) or I'm on my side with my arms all curled up and my hands under my neck or pillow. I also find that clutching a stuffed animal helps. I toss and turn a lot though, probably due to my awful night sweats >_<

I use a sinus rinse squeeze bottle thing made by Neil Med. It gives a little more pressure than a neti pot, which is really helpful. I find it really helps with inflammation. My ENT recommended this device several years ago because it has slightly more power than the regular neti pot. But like the other posters said, don't use tap water. I have well water so I boil the heck out of it and let it cool and then use that. When I had city water, I bought jugs of distilled water.

It's hard to know. But since we're all sort of reporting visual disturbances of some sort, even if they aren't exactly the same, it's probably safe to say visual disturbances are associated with pots. I think the doctors might agree it's associated. It was mentioned in one article I think. Interestingly, I just saw a new doctor today, and one of the first things she asked me was "How has your vision been?" I was shocked, haha! I didn't even mention anything before she asked, but it's great to have found a doctor who believes that all these seemingly unrelated symptoms are actually related to POTS/ANS problems.

I'm self-employed and work from home. I was forced to quit a PhD program and turned down a university teaching position because of my health. There's no way I would be able to work full time, especially not at a job as taxing as teaching. I still want to earn a doctorate, but I have to be a full time student to qualify for financial aid, which means teaching 2-3 classes per semester on top of taking classes and doing research-- just not gonna happen for me.

I hope you're feeling better! I'm on 100 mg of Zoloft myself and I couldn't imagine stopping cold turkey. I have heard that Benadryl can sometimes help with side effects of weaning off an SSRI, but I've never tried it myself. I haven't heard of Lamectil, is it another AD?

I don't get this sensation, but bright artificial light bothers me. Also, if I close one eye, the vision in the other gets very dark, with lots of black visual snow. I wonder if that could be related to ANS issues?