Birdlady

I was given nitro during my first TTT. The vomiting, sweating, lightheadedness and headache could have been from the nitro itself. It made me very sick which is apparently common. I have no idea why they gave it to me though. It made my HR/BP take off and was extremely unpleasant feeling. I remember the terrible headache very well.

I went undiagnosed for 8 years. Age 16 to 24. Then after getting diagnosed, the meds just gave me a lot more problems or did nothing. I didn't have any positive change with salt loading, fluid loading, exercise, saline IV's, electrolyte drinks, DDAVP, midodrine and florinef, so I don't bother with those. Beta blockers work a tiny bit, but again not worth the other symptoms I get from it. I consider myself an untreated POTSy at this point... I went to the doctors 5 years ago to get a diagnosis and treatment, but I realized it was not what it was cracked up to be...Some people seem to do better than others with various treatments and some people just get better with time or go through relapses. I definitely can't understand that because that has not been my personal experience at all. For me it's in Jesus' hands at this point because doctors and naturopathic means have had no appreciable impact on my health at all. Take care

If it's an indoor pool, then for me those are impossible to handle. It's too humid in those places, so no matter what I'm doing (sitting, lying down, in water), my HR is always too high and I feel sick. The water can be too hot as well.

Yes I definitely have this problem. For me it's weird though because sometimes I'm totally ok and then other times it just hits me like a ton of bricks. For me I start to feel a bit weird in my head. I feel the life begin to drain out from me. Then my HR will increase to 130+ even if I'm sitting. That's always a sure sign for me it is time to remove myself from the environment. If I don't I usually become a total basket case. I will just begin to cry, which in turn makes my body even more upset. AHH! Then after experiencing sensory overload, I have to take at least 1-2 days to recover. That means no visitors, no talking on the phone or anything. Last night I went to a church meeting and within 3 songs, I was done. I had to get up and run out of the room away from everyone or I was going to interrupt the whole service. I actually did just that a few months ago and that's embarrassing! So I was able to get out before that happened and I put my head down on the table and just waited until the singing was over. I should have brought my earplugs, but I did not expect to react so poorly this time. Thankfully after some prayer, I did feel better and was able to continue on so that was fantastic. For me I have this problem in stores when it is busy. This is why I go late at night when no one is around...haha It is not uncommon to see me at walmart at 3 am!

Ingesting a lot of cabbage like this may affect your thyroid. Something to keep in mind!

I'm surprised more people haven't posted to be honest. I haven't found any results with Florinef, midodrine, increasing salt intake and even saline IV's. Beta blockers just chill the heart out, but none of the other orthostatic symptoms and nothing gets rid of heat intolerance.

s-pot, I also have sinus problems and I'm starting to think it's related as well. The blind spots started in October, so I'm not in immediate danger or anything like that. The next stop is a neuro-ophth, but I honestly doubt they will find anything wrong. There are others online who have this and no one can find anything wrong at all. You just keep losing spots of vision and no one knows why.

This is interesting! I definitely fit this criteria. By the time they got to 70 degree tilt at CC, my HR was already 119 and I met the criteria for POTS. At the end of the 45 minutes, my HR was 150. The moment they laid me back down, the first minute of recovery, my HR was instantly 75. I don't agree at all that if you return to normal while sitting you have a better prognosis or quality of life. I've had POTS since at least age 16 (probably as early as age 9) and I've only gotten worse with time. (I'm now 29). If your HR is instantly at 150 when you stand, then how do they come up with this idea that you have a better quality of life... It makes no sense to me. Even though my heart calms down instantly, I still feel shaky, have heat intolerance and if I overdo it too much, then the big crash comes where I have to sleep it off. This study further pushes the idea that if your vitals are normal that POTS is essentially "turned off", which we all know is not true.

I've already been down that route, many many years ago. I don't have PA, but still used injections to see if there was a change. There wasn't unfortunately. Thanks though.

My blind spots are constant. It doesn't matter what is going on. I do get bright spots that are worse when I am exposed to sunlight. Even the light coming in from a window is too much for me now. My pupils are normal sized, so my doctor thought my photoreceptors were dying, but with a normal ERG that is definitely ruled out. The first thing I did was take B12 and it changed nothing. I've had others tell me this, but sadly I can't say it did anything for me. Part of what you are describing sounds like presyncope vision problems. Where things go dark or white for a few moments and then you recover because your BP stabilizes. I think I can read a white piece of paper ok. Thankfully the blind spots I have are not center vision! The one spot actually looks like a grid or honeycombs, which is new since Friday of last week.

Well my ERG came back normal, so now it's off to a neuro-ophthamalogist guess. My eyes are getting worse almost on a daily basis, so it's weird that they see nothing at all wrong with them. It's also good to know that no one has really replied with similar symptoms. This lets me know this is beyond POTS or perhaps it will lead me to an underlying issue is that is causing POTS. Perhaps I will find out more answers to the larger picture. Unlike most POTSies here I've never been referred to a neurologist.

I was curious if anyone else on here is having permanent, progressive blind spots appearing in their vision? Just to be clear I do not mean what you get when you stand up and feel presyncope and I also don't mean migraine auras. There's many threads about those, but I haven't seen many about other types of more permanent vision loss. If you vision loss, can you describe what you are seeing and if doctors have any idea what is causing it? How many spots do you have? Are they fully dense (black spot) or are they more shiny and reflective? I had a test done on Tuesday, so I'm waiting to hear back from the doctor. In the meantime, I'm just wondering if other POTSies are getting blind spots. Part of me thinks this is something else. Thanks.

Sounds like some of it could be high cortisol (Cushings).

Many years, I spent almost all of my time researching. I was so sure that I would find that one thing that would make me better. I'd get that one special test done or try some special treatment or supplement and then everything would be better. Well that did not happen. I have been at this for about 8 or 9 years now. I had to walk away from all things research and even this forum as well as even stop talking to some of my sick friends. I just needed to get a new perspective on this and that is when I decided to listen to God. He has told me, he is going to heal me, so whenever I have energy I channel it into knowing him instead of knowing POTS or knowing a diet or knowing some other medical research thing. Getting to know my sickness became so unhealthy at times. I could really relate a lot to what Giraffe said. You have to find peace and live in a place from that peace. Now for me that is knowing God and seeking him. I know for some, they do not subscribe to this because many think that God actually gave them their sickness for some reason. I believe that God is good and not putting sickness on his children to teach them, so this is where my journey has taken me now. God bless and take care!

Yes I take naps and it helps. Sometimes it is more like a crash though!! Sometimes it is physically impossible for me to stay awake, so I sleep. Just the other day I took a 3 hour nap. I felt much better afterwards. There are some times where I don't feel better after a nap, but that happens too infrequently to really worry about it. I may go a whole week without taking a nap, but then another week where I take one every other day. I just listen to my body! BTW outside of circadian rhythm problems, I don't have problems sleeping at night. I've used one of those CO2 things and I don't show any events at all. I never had a full sleep study though.

The only person I know who was totally healed got prayer. She was also healed of several other conditions at the same time too. It is that person's testimony that started me on my own journey for healing.

Agreeky, At night when I turn the light off, my eyes will flicker for a while. Then once the closed eye hallucinations begin it feels like waves of darkness coming over my field of vision. It is darker than the darkness in the room. Now some people online say they see colors and I do sometimes, but I mostly just see black darkness moving across my vision. I try to position myself in a way so I can see light through the crack in the door and it will cover up light and actually block objects in the room! It can be claustrophobic feeling and scary. I have not had this my whole life, so something has changed within the past year or so. The first 30 seconds of this video is what I see, but it's not a cool color. There have been times I've seen a really pretty purple or yellow, but that is pretty rare! It will keep repeating the same motion over and over again like waves crashing. Sometimes I do feel like I'm losing it...lol

I have a lot of eye symptoms. The lights and floaters started several years ago, but everything got a lot worse in Oct when I woke up with a permanent blind spot. Now i have several more and in many areas the vision isn't quite right, but it's not a total blind spot. On exams my retinas are fine. I have visual snow, blue, yellow and red dots, afterimages, as well as dark and bright spots in my vision. The one day I was driving home and the sky was flickering. Several times now I've had a large black scotoma appear out of nowhere for 30-45 seconds at a time and then go away completely. It's pretty hard to even describe everything I've seen. My eye problems are related to all of my POTS symptoms. The longer I am upright or if I am overheating, the worse my vision gets. Take for instance today it was very hot and the flashes in my eyes were terrible. I also have closed eye hallucinations in dark rooms which could be the tunnel vision the OP was talking about. The movement of the images can make it seem like you are blind! When it first started happening, I had my husband turn the light on a few nights. Supposedly this is normal, but many people have never experienced these (unless on drugs). My eye symptoms aren't related to low BP. I've had those problems where the vision goes all white or the edges turn dark and start to pulse. What I have now is definitely different. Since I've been examined so many times, I figure it's probably something neurological. My doc now says it may be Persistent Positive Visual Phenomenon.

Yes for me anything that requires you to hold your breath or regulate the flow of breath increases HR. When you drink or eat food you are actually holding your breath for that time. This is why many POTSies can't sing at all.

I'm one of those weird POTSies that does not really have gastro problems. I am very lactose intolerant though. I ate gluten free for years and at some point I thought maybe it helped, but after being back on gluten for a while now, I have not noticed any changes in my stomach or in POTS. I just have to avoid dairy or I will have bloating, nausea and all of those symptoms.

10 years ago before I knew what was wrong with me, I was well known for my caffeine addictions. Coffee, tea, lattes and soda were the only way I could do anything at all. At that point I was working 40 hours a week and going to school full time. I don't know how in the world I did it. I still do fine with coffee, but there are just some days where it's really bad. For me my heart isn't the problem. Usually I will get the crash that Rama mentioned and then I'll have to drink more caffeine to pull myself out of it. My morning coffee is something I look forward to and I rarely have issues with a single cup. When I have more than 2 is when I begin to have trouble, so I try not to do that very often! Someone mentioned chocolate....For some reason the ultra dark organic chocolate bars are terrible for me. I feel nauseous and get a headache. Regular hershey's or Nestle's chocolate has no effect on me. Go figure though, I can take pseudoephedrine and feel better, so this all makes so little sense to me. haha!

High DHEA can be caused by late onset congenital adrenal hyperplasia. There may be other causes, but that's something to consider.

"I take a normal dose for congestion, every other day:" That's probably what I was doing too. Very interesting!! Thanks for reporting back. I haven't taken it for a while especially now with the summer heat, I worry it will make my heat intolerance worse.

Hi Carrie! We spoke through emails a LONG time ago! Wow it seems like another life time ago! haha.... Nice to see you on here. I will check out the video sometime this week.

Yes I get tired after eating. My heart rates are always 20-40 points higher, my tremor is worse and I usually feel terrible and then take a nap. Interestingly I don't have digestive problems with POTS, so for me it just seems like a blood flow issue. Many of my naps are after eating. I used to take my blood sugar during these times and it was never unusually high.