Birdlady

Angela that is definitely not AMN at all. I don't know what tests your doc has done, but You might want to check out absence seizures. This can cause dots in your vision like you are describing. The fact you couldn't find the words to tell your BF is another clue. Good luck.

One time my husband was admitted to the hospital from the ER because his HR would not come down and his TSH was very low. They thought he was in a thyroid storm. All in all, the week long hospital visit was worthless. They wasted both our time and money. You are better off talking to your GP or cardiologist and being assertive about testing you want.

Angela,

From what my doctor told me they have to know to look for this in order to be diagnosed with it. It's not on most doctors radars at all and since your regular exam tests will look normal, they won't know to pursue it further. You have to get an infrared scan of the eye. That's what I am waiting for now, but that won't be for a few months as we see what happens. I'm to call if more show up. The first retina specialist told me he saw a white dot on my retina at that time and I thought that perhaps I had a white dot syndrome. However my scotoma should have gone away by now if it were one of those. The new retina specialist told me she saw nothing on my exam at all, but I sent over the photographs from the first doc so she could see what the first doctor saw. All I really know is that I have small scotomas in my eyes that are annoying, but in the long scheme of things won't interfere with reading writing or anything like that. It's just frustrating not knowing what is going on. It's also scary thinking I could wake up tomorrow with more spots.... I have had flashing lights, floaters and get weird flashes and lines get stuck in my vision for years. I started seeing eye doctors in 2009 because I had blue lightning steaks in my left eye.

I've had the one larger spot in my left eye since October. I literally went to bed fine and woke up with it. It has never gone away. I now have two other small spots in my left eye and several smaller spots in my right. I made this image for someone else to show the vision loss I have. It is very small on its own and it isn't black blobs or lines, but rather just the vision isn't there. My brain fills in the missing vision with details around it, so honestly I don't even know I'm missing vision until I look more closely at a straight line, pattern or notice the color is off in the blind spots. I don't have blurry vision or things like that. My vision is bad in my eyes, but it can be corrected to 20/20.

http://i16.photobucket.com/albums/b46/danab1984/3-13-2013_zpsf65e7e98.jpg

No there is nothing you can do about it. I haven't seen anyone else with POTS describe what I have. I know many have other visual issues like floaters or visual snow, but not actual scotomas in their vision. You would think others would have this if it was only related to NE and epinephrine.

http://eyewiki.aao.org/Acute_Macular_Neuroretinopathy

I still don't know 100% that this is what I have, but it very closely matches my symptoms. It happened acutely after forcing myself to stand up for a very long period of time on several consecutive days.

Well the doc isn't completely sure yet because I have to get more testing done to confirm this. It's hard to diagnose, but she thinks I might have acute macular neuroretinopathy. There's no treatment or anything they can do about it.

Rama I saw an eye doc the other day and me taking PE will be coming to an end most likely. I have a tentative dx of an eye condition that can be made worse by high catecholamine levels (go figure...). I probably shouldn't chance it anymore considering POTSies have high levels any how, but I'm still curious to see how you feel.

I voted for them all...haha They are all terrible for their own specific reasons, so they don't get done and my house is a disaster.

I don't think so, but I vary so much from day to day it would be hard to tell tbh!

Rama, let us know how you feel on it. I looked around online and I found a segment of people with social anxiety, ADD, ADHD and other similar health issues take PE for a sinus infection and then realize how immensely better they felt on it...It took them a while to realize what had changed to cause it, so it doesn't seem to just be placebo. Some people posted on those threads and thought those who felt better on it were crazy because it makes them feel out of their minds, wired, rapid heart rate and other terrible symptoms, so it's not for everyone.

I have taken it a few more times and I definitely feel better while on it. My heart rate isn't perfect, but it feels like my body is working more properly when I stand. I still have heat intolerance so that's hasn't changed. My mind is more clear though which is awesome.

We were trying to get food stamps in PA. We were denied and the appeal process requires you to go to court. There's no other way. You can't reapply the same way.

I've looked into SS and I never worked enough to have earned the credits necessary because I was already sick and I only worked very low paying retail store jobs. It's a lose lose situation.

http://www.ssa.gov/retire2/credits3.htm

I'm sorry this thread went off-topic because of my discussion! I'm done now!...haha

Thank you Kelly! I live in PA. We were denied due to a stupid technicality so now we have to hire a lawyer and go to court. We can't afford that, so we gave up on it.

Our families have been helping us, but they can't help us forever. We have been selling everything we own. hah

If it's heart rate based, then I usually just stay in my chair on my computer and try to keep my movements to a minimum. I'll take a beta blocker too which helps to just chill my heart out a bit. I may have my husband assume cooking responsibilities if he's able to do it. We are both sick with POTS/CFS, so someone at some point has to push through symptoms. HA! Now if we are talking heat problems like during the summer time, then I crash and sleep for hours. There is no overcoming heat intolerance for me. Once I'm overheated, my mind stops working. I have to lie down or get cold baths. Most of spring and summer is me lying down.

Your hubby has POTS/CFS as well? Holy smokes that must be hard! When I need things done and Im not up to it I ply my wife with caffeine and get her to do it LOL.

Yes we are both sick and neither of us can work. We were denied all state assistance as well. It's been very very hard times here.

Any of you who have a spouse that's still working to support the family, be thankful for them!! Tell them you appreciate the hard work they do. Because if something would suddenly happen to them, then what? How do you eat? How do you pay bills? How do you do anything at all? ...That's pretty much what happened to us. We thought his problems were going to be temporary, but it's now been 4 years. Now we lost our health insurance, so I'm pretty much at the end of my rope. I need a miracle.

It makes me feel worse as I'm doing it and afterward. If I exercise consistently for more than a week, then I'll start to get sick with a cold and sore throat. I don't even try anymore because in the end I'm actually spending more time in bed and feel worse.

Personally for me Phenylephrine doesn't do anything at all. It doesn't even help my sinuses! If you take the nasal spray form it works, but not in the pills.

Found this in google too...I'm not alone apparently.

http://news.ufl.edu/2006/07/19/decongensant/

Unfortunately though I really don't feel comfortable taking pseudoephedrine on a daily basis, so it's just another one of those weird things I have found...

No it was terrible. It actually made me feel extremely anxious and paranoid...

Rama,

I have heard some have the opposite effect with adderall and pseudoephedrine. I have no idea what that means...hah! I can't really say that it made me feel that much more energized. If I had to compare it, I'd say nothing more than a cup of coffee might do for me.

I'd imagine doing well on ephedrine pretty much rules out any sort of NET deficiency right?

I was really puzzled about the whole thing because I don't really have the typical low BP/low blood volume/chronically dehydrated/salt loading type of POTS. I never ever faint and my BP was steady and even went up some during my TTTs. It only got a bit low towards the end of the 45 minutes. My 10 minute NE levels are 613. I have no idea...

I was hoping to find at least one other person who did well on pseudoephedrine. haha

I'm sorry about your sister Angela! Doctors are really quick to throw meds at people. I was offered Adderall by one of my POTS doctors and I refused it. You are right it is basically a legal form of meth! scary!!

It was really amazing!! The first time I took it, I thought maybe I was making it up....haha But I took it again and something definitely feels right. Too bad I don't feel comfortable taking it on a long term basis. The sudafed I have is really old, so I'm not sure if that matters. It expired in 2011...lol

I have taken pseudoephedrine twice now. I've been having terrible sinus problems, so that was the main purpose of me taking it. However I have to tell you, it does something else for me and actually makes me feel almost normal for a few hours.

Last night when I took my vitals standing it was 106/75, 86 heart rate... I guess it's vasoconstricting something in my body. I don't tend to have blood pooling in my feet, so maybe it's somewhere else? I know most people on here avoid this med because it makes their heart race. I don't have that issue at all. I took my vitals a bit later and my HR was 105 standing, which for many of you might not seem like a bit deal, but that's huge for me. I see 165+ on a regular basis.

I'm starting to think that I self-medicated for most of my teenage years with ephedra. It's all starting to make sense to me now. My POTS was not that bad back then. I still had heat intolerance, but the actual heart rate issues were relatively in check...or at least I didn't seem to notice them much.

So I just wanted to share this you all. I don't recommend anyone try this unless you ask your doctor.

A nice perk to all of this, is my mind is super sharp while this is active in my body. Just in the past 2-3 years my ability to write has gone down drastically, which has affected my ability to work even from home.

If it's heart rate based, then I usually just stay in my chair on my computer and try to keep my movements to a minimum. I'll take a beta blocker too which helps to just chill my heart out a bit. I may have my husband assume cooking responsibilities if he's able to do it. We are both sick with POTS/CFS, so someone at some point has to push through symptoms. HA! Now if we are talking heat problems like during the summer time, then I crash and sleep for hours. There is no overcoming heat intolerance for me. Once I'm overheated, my mind stops working. I have to lie down or get cold baths. Most of spring and summer is me lying down.

Even if there's no research on this, I think so. I wouldn't be surprised if I've had it since birth. Even though I consider my onset at 16, I absolutely had signs of POTS before that time, but it was not debilitating yet. As a kid, I used to cry and get upset in the heat, while shopping or doing other things that required being upright for long periods of time. I think I just acted out because I felt so sick, but I didn't know this to tell my parents. At age 9, an uncle died, so the whole family went on a trip to be at his funeral in another state. I specifically remember knowing something was very wrong as I could not keep up. I stayed home that day and slept because I had a splitting headache and had felt so sick from the heat. Around 13, I started to notice more issues. I tried out for volleyball, but I had to quit.Then only a few years later is when things escalated and I have been getting progressively worse.

My brother has some signs of POTS. He doesn't seem to be as affected by it though. Hopefully for him it won't ever get to a place where it affects him daily. I do have a mutation on the NET gene, but I have no idea if that SNP in particular is of any significance to cause OI/POTS. The docs I emailed at Vanderbilt never responded to my requests.

A few names I have heard in passing over the years.

Dr. Kapoor http://www.vitals.com/doctors/Dr_Wishwa_Kapoor.html

Dr. Erek Lam UPMC Passavant

Dr Ganz

I have no experience with any of them except for Dr. Ganz. He is listed on dinet here. He's mostly concerned about just trying different meds and not about testing to find the underlying cause. If you want more info, I'll have to take it to PM"s as we are not allowed to discuss our doctor experiences on here.

I've never had any of the testing done to check for it, but I think I have it.

My rheumy thought I had the traditional form of neuropathy so I had a EMG done. The tech was convinced I had it too because of my symptoms and the way my legs look. However he said afterward that my results were perfect and he had no idea why I had numbness, tingling and other symptoms there. He did not seem familiar with SFN.

Now I am without health insurance, so despite my curiosity, I am no longer getting any testing done.

Yes I have this, but probably not as quite bad as you do. However, it seems like I go through varying spells of increased heat intolerance where I can feel overheated even when it's 50 degrees. The best way to describe it for me is any rapid rise in temperature, even if it's completely "normal" for most people, is extremely uncomfortable for me.

Sadly, I haven't found anything to help heat intolerance. I think it's probably one of the most insidious symptoms. You don't realize until it's too late that you are overheated and then you cant' think clearly enough to get help. This is one of the big reason I don't like to go to the store alone. I always overheat in every store I am in.

Heat intolerance is also why I can't exercise. The moment my body gets hot, I am done.

I agree that I'd rather be cold than warm even for a moment. You can always put more clothes on or get a heating blanket, but you can't change the temps of stores, businesses etc. My feet are always cold too. If I'm not careful and I'm taking a beta blocker on a regularly basis, I will get chilblains.

Achilles,

I play WoW (it's an online video game) and a few years ago I swore off ever doing arena or rated BG's because of the way it made me feel. Lately I have ventured into raids and if something happens to my character where I need to move out of the way of something or if it's an intense part of the fight , I actually shake and feel ill. Afterward its like I'm coming down from a high. It is awful. I have never taken my temperature, but that's a really good idea. I bet it's high like yours. I used to randomly take my temp and it would be 99.6+. One time during the summer and it was 103! I was not sick. just heat intolerant.