Birdlady

Yes and no. I don't think it is as simple as a hormone being out of balance because treating it should make the symptoms go away and it does not. My theory is the imbalanced hormones are simply a symptom of another underlying issue. However with that said, high estrogen was one of the things we believe triggered my husband's POTS (we both have POTS! haha), so it is very interesting that was yours too. The estrogen is under control now yet he still has POTS! Go figure.

I can relate to this. For years my husband did not understand, but now he has POTS too. /sigh That wasn't what I was going for.

I actually decided to do it myself, but just had one of my natural doctors sign the requisition form. It was through Genova Diagnostics. The results are nearly impossible to interpret though, so either you'd have to see a mitochondrial doctor or try to research it on your own. I'm too broke to see a mito doctor at this point!

Issie this is very interesting. I'm glad you figured out what could have triggered your POTS attack. You could have simply had a reaction to the aspartame. I stay away from aspartame, acesulfame k, sucralose and whatever other artificial sweeteners. Ugh If I eat it, I get massive migraines. When I used to drink diet sodas on a regular basis, I had migraines all the time and lived on Excedrin. I stopped drinking it and I never get migraines now. That's proof enough for me that it's a bad idea! You cannot buy gum at the store without at least 1 or 2 artificial sweeteners in it. Even ones that say "sweetened with Xylitol" will have other sweeteners in it. Gah I just want some gum. haha I had my organic acids/amino acids tested and interestingly phenylalanine was elevated on my tests. I'm not really sure what to think about it all! Nice job investigating all of this!

Most blood tests will come back negative, so everyone who said no should keep that in mind. It is not uncommon. Any positive blood test means you definitely have something going on. A few months trial of GF is definitely warranted. There is a lot of information about this the different types of blood tests and you can search google if you want more information. Here's a post to a celiac forum that is an interesting read. http://www.celiac.com/gluten-free/topic/74266-gliadin-iga/ As Sandy said, if you have low IgA or IgG immunoglobulins in your body, then none of the antibodies tests will ever show an elevation because your body cannot produce enough of them. Ironically this is common in Celiac if I remember correctly. I don't think I have symptoms when I eat gluten, but it could be affecting my nervous system so I just decided to get rid of it. My husband is highly reactive to gluten so I did it mostly for him. You cannot have gluten eaters in the same kitchen as a non-gluten eater. Well you can, but it is extremely difficult to keep cross contamination from occurring. I didn't feel like dealing with all of the hassle. Here's a good blog entry about this problem I found through google. Another really good read for those following or attempting to follow a GF diet. http://tastyeatsathome.wordpress.com/2011/03/20/kids-in-the-kitchen-cutting-down-cross-contamination-in-a-shared-kitchen-and-molten-chocolate-lava-cake/

Ugh I have nothing good to say about ER visits due to POTS symptoms. Yes they will treat you like a drug addict or crazy person. When I went to the ER I was accused of being a heroin addict and they proceeded to check me for track marks. I am not kidding! The doctor told me that I must be really good at hiding them and wanted to check in between my toes. He also said that my neck pain and other weird symptoms I was having was likely withdrawal symptoms or complications of my heroin use. I have never used any drugs. I do not look like a druggy and my husband who was well dressed brought me in. There was no reason to be treated like that. It was completely ridiculous. If your son's life is in danger or if you are very concerned then you have to go to be sure. Just don't expect much...

IgG allergy tests says I have reactions to gluten, so I've avoided it for more than a year now. I'm not sure if it's done anything, but then again I haven't cheated to find out. heh

The fact they removed the charge tells me it is a form of insurance fraud. If it was necessary, then why could they just remove it. You know? They thought you had insurance and was trying to get as much money from them as possible. I know for a fact that 1 doctor office did this to me years ago because my dad had very good insurance through his work. Although an extra $700 is pretty extreme in the case of the OP! They charged me for a complex visit ($120) rather than the normal visit ($80) for an appointment that was no longer than usual. It is sickening and these doctor offices need investigated and charged if the investigation finds something criminal.

Life Extension is really on top of things. My husband subscribed to it a few years ago and I love reading it cover to cover each month. I just wanted to add you should probably check DHEA-S levels rather than just DHEA unless the article specifically says DHEA? I'm trying to think if taking florinef (fludrocortisone) would lower DHEA. I know taking glucocorticoids does because it shuts down that part of the adrenal, but I'm not sure if mineralocorticoids do too. Hmmm Definitely something to consider. Low DHEA can cause low sex drive, low testosterone, decreased immune system function, decreased bone density and a few other things in women. Supplementing DHEA has been very very good for me and I don't have high aldosterone levels. This is not something you should just try though. You need a doctor to test you first because high DHEA isn't good either. Thanks for sharing this Issie!

Oh yeah I totally agree with you. There are many many other environmental things that can cause POTS! Mold is very bad and everyone should have their houses tested for that stuff. Our house was clean thankfully so I ruled that out. There are of course other sources for mercury besides amalgams (vaccines, fluorescent light bulbs, mercury thermometers, from your mother through the placenta) and I didn't include any others in this poll just for simplicity sake. There are other heavy metals which can cause problems aside from mercury too. Lead, tin, aluminum and arsenic are pretty common these days as well. My bathtub, which I used for about 5 years, was made of lead...

Wow that is unacceptable. This sounds like insurance fraud, seriously. Why would any doctor need to charge that much...

Yes It is true not everyone is affected by amalgams or at least not in the same way, so I'd love to know why! More testing needs to be done because there is no doubt mercury is toxic. Some are now looking at Apoe E4 as a possibility. I've never had that checked, so I don't know if that's a possibility for myself or not. I am keeping an eye on my vitamin levels. Thanks It's a long road ahead of me.

Thanks everyone for responding. I appreciate it!! I wanted to wait until we have some responses to post my story. As a child I had an amalgam in nearly every single baby tooth. Most of my childhood memories are from the dentist office. I would cry, scream, kick and whimper as the dentist drilled into my teeth. He did not believe in Novocain... As my permanent teeth came in, I tried really hard to keep them from getting cavities. I still ended up with 8 amalgams also with 4 root canals. Overall I have 16 cavities and I don't know why. Nowadays the dental hygienist tells me how I am her favorite patient because she doesn't have to do much because my teeth are very clean. I have blamed dry mouth for a lot of my cavities over the years. The dentists tell me I need 4 crowns, but I've been avoiding that because of the expense. Everyone is right, my mouth will likely cost the price of a small house in this area. lol I had all of my amalgams removed 2+ years ago and replaced with composite. I do not suffer from any sensitivity and the amalgams I had in my mouth, were already deteriorating and had decay underneath them. They were only 2 years old when they were removed. I still have a lot of accumulated mercury in my body from all those years of amalgams in the mouth. The problem with mercury is that it does not just leave the body very easily. After many years of trying other things to help my POTS, I am now focusing on chelation again. I tried it a few years ago and the side effects were so severe, I had to take a break. Now I am sticking with this no matter what and it's not going to be an easy thing or quick fix, but I'm trying to be hopeful. I suppose the side effects I get are proof enough to me, that something is definitely wrong.

I know this is a touchy subject for some people and I'm not looking to get into a debate about this. I just want to know whether you have ever had any amalgam fillings in your lifetime. If you never had any (not even as a child), then answer no. If you've have amalgams or had amalgams removed at some point, then vote yes. Thank you.

Here is a study but you will note that people with hyperthyroidism have LOW (yes low) catecholamine levels even though they suffer from a hyperadrenergic state. Hypothyroid patients have higher levels of catecholamines, but it has everything to do with the receptor sites. http://www.ncbi.nlm.nih.gov/pubmed/2189309 Here's another one that just says thyroid hormones play a role in the beta-adrenergic receptor responses to catecholamines. http://www.ncbi.nlm.nih.gov/pubmed/6257196 If you type in catecholamines thyroid into google you'll find a lot more info.

Yep I get this too. I feel worse if I sleep in too late. Not really sure why!

Naomi you are speaking my language. I've been tackling this for about 7 years now and I still have not found my cure. I don't know if there is a cure, but that has not stopped me from trying a million different things. I've ruled out a lot of more serious problems, have tried hormone replacement, vitamin replacement and for now that leaves me with heavy metal toxicity. I know I am in the very least, lead and mercury toxic and that is what I am working on right now. It is not easy. It is not a quick road and most people who chelate don't really do it long enough or get into the trap of using natural chelators which I think work very very poorly. I am constantly questioning everything and I am better for this. I don't suffer from a lot of the symptoms others have here because I have done a lot to help myself outside of just taking rx pills. I feel pretty confident that most mainstream doctors really have no idea what POTS is nor do they have any ideas on how to treat it. I completely agree with you that it is simply a SYMPTOM of a larger issue. Everyone has breakthrough POTS symptoms regardless of the number of rx they take... What they are pushing is just NOT working. I also wanted to get more and more tests, but I realize no matter what those tests say the doctors won't have answer for you. In fact I believe they will actually get you to believe there is nothing that can be done. Maybe there is not, but I have to at least keep trying or there is little reason to keep going at times. That's just my opinion.

All of this is very confusing and I even question NE > 600 automatically putting you into the Hyper POTS category. For me I have standing NE over 600 but I don't suffer from high BP upon standing at all. Mine were tested following proper protocol too! I think our adrenergic receptors can be ultrasensitive or insensitive, so a 600 for someone could be "normal" meanwhile maybe someone with levels of 400 can cause hyperPOTS like symptoms. There are studies out there about the receptor sites and how they change according to thyroid function, so I think this is likely with POTS too. I'm just me thinking out loud and realize this isn't really going anywhere!!!...haha

The diagnosis criteria is slightly different everywhere and it really depends on what hospital/facility/doctor you see. Some hospitals categorize hyperadrenergic POTS for anyone with standing NE levels above 600. Obviously this means that being >600 is the exception rather than the norm...but that's just my opinion!

I haven't been on here for weeks, but I wanted to sign in to say that I agree 100% with what Todd was saying throughout this thread. Dr. Levine needs to revise his study and take out the word cured. It is absolutely ridiculous to even think that he's cured these people of POTS. Over the years I have done a lot of non-traditional means to find a cure for myself and I have yet to really find anything that has put a dent into my heart rate increases. The only thing that fixes me is staying as cold as possible...haha. I'm still working at it and I have crossed off a lot of things on the list. For me exercise is really nearly impossible because of my severe heat intolerance. How can you raise your heart rate without also raising your body temperature? As soon as I get warm, it does not matter if I'm lying down, sitting, standing, swimming or in a frigid cold room, I become symptomatic. I have a recumbent bike and my heart will go from 70 resting to 140 just because I am getting warm. It has nothing to do with actual cardic output. Perhaps someone can explain to me, how exercise is any different compared to when we are just standing in tachycardia. Surely while we are tachying away at 150bpm, that is a type of exercise for our bodies? lol Anyway I have nothing more to add to this, but I think Dr. Levine is pretty out there for thinking he's cured POTS.

From one of the articles, Right here shows you the way drugs are approved in this country is a joke. First they can change what the original hypothesis says and any other studies that show their drug isn't working, don't even have to be submitted to the FDA! WHAT? It is no wonder many drugs which are dangerous slip through the cracks. Also why many drugs that actually do nothing, but cause side effects slip through as well. They are allowed to do anything they want apparently I don't take midodrine because it did not help me, but I am curious to see what happens with all of this. You certainly don't want an ineffective drug taking midodrine's place if they do decide to stop producing it.

wow that is really interesting and actually quite scary (both of your cases). I'm not exactly sure what could be the problem, but I agree it seems like too much of a coincidence. I'd think about looking if there's mold, heavy metals or any other type of chemicals in the house. Have you ever had your water tested? What kind of work did your family do? Is it possible they brought the toxins home?

This is the sentence that I think was sort of offensive. "To expect a man or others to just "go without forever" is imo, selfish." There is nothing selfish about not wanting to have sex when it hurts, yet I felt guilty all the time. Every time I had to turn my husband down I felt like a failure of a wife. I have immense amounts of guilt from that dark time that I do not need a stranger to tell me it was selfish. See where I am coming from? In my mind I never thought it would be forever, but I knew it was going to be for the foreseeable future. Yes it frustrated the heck out of my husband, but it wasn't like I was sitting around on my butt doing nothing to fix my issues. I wasn't trying to be rude either! You are feel to speak your mind. Just don't be surprised if someone disagrees.

Sophia I think some may be offended by your post. Finding a solution is not always as easy as you've made it seem. I think for the most, admitting there is an issue is the hardest part. It is necessary though. Going to your spouse and telling them there is a problem can be quite embarrassing especially if it wasn't always a problem or if you are young. I was 20 years old and was not feeling it at all. For years, I tried to figure out what was up. I read books, took herbs, tried those romantic novels etc. If a person is having pain, then none of that is going to help. You start to become scared of having sex! My gyne had no solutions for me and basically told me to get used to it. (I'm not kidding!) Anyway, I just wanted to reply to your post because even though you meant well, I think some may take it the wrong way.

A few years ago I had no sex life too. Having sex was soo incredibly painful. The poster who said it feels like they are poking an organ, yes exactly. I think that is how I described the pain too. It would almost be so bad that I'd nearly vomit and dry heave. When something hurts that bad, you don't want to do it. DUH! It's especially difficult because society expects you to be having sex like 5-6 times a week in your early 20's. Once or twice a month was a good month at that point. The intense guilt I had during this time still haunts me. I still feel bad for all of that and probably won't be able to forgive myself. Eventually I got so angry about the problems, that I started looking for alternative solutions. After a lot of research I realized that I probably had fibroids causing the painful intercourse and some other symptoms too. Testing came back clear, but I was not satisfied with that answer. I began taking an enzyme supplement which is supposed to dissolve fibroids. Within 3-4 months there was noticeable improvement and I can gladly say that I can have sex with no pain now. Getting the sex drive back was more complicated, but knowing it is not going to hurt helps a lot. It's only natural to want to avoid something that hurts! My sex drive returned when I added in DHEA and it has been good ever since. I'm not saying this is what will work for you or what you need. Just relaying what worked for me.