Birdlady

This is one thing that hydrocortisone has "cured" for me, which I take for adrenal insufficiency. I can drink alcohol now without issue. Before I would never touch it because I felt absolutely horrific. My husband could never understand why I would go out of my way to avoid alcohol.

Of course I don't overdo it at all and make sure I drink water while I'm indulging. I drink like once in a blue moon any way, so it's not habitual. It definitely is calming for me.

Tachycardia at rest is not accomplishing the same thing as exercise. Exercise strengthens your heart muscle, resulting is a more efficient heartbeat over time. I have a life again. In fact, I am taking my kids to Disney World next week. I am running in a half marathon this October.

A lot of your post was aimed at me, so I just wanted to respond and say that we will have to agree to disagree. From everything I have read, you have an unique case of POTS because you actually felt better while exercising. I do not feel better while exercising at all. It takes me to more time to recover than seems reasonable and I never gain any tolerance to it. I can ride 2 miles on my bike 3 times a week for a month and still feel like death when I'm done completing it. We walk the same loop at the park for years now and I still am in the same unfit state I was when I started years ago. Maybe I really am just lazy and weak. We can add that one to the Grinch terminology.

You said that tachycardia at rest is not the same thing as exercise. Have their been studies that prove this in POTS patients? If our bodies cannot figure out how to control our HR's from something as normal as standing, then I do not think we can just assume something as fundamental as this. I'd love to see more exercise related studies and I don't mean just telling people to row for X number of days a week at a certain target heart rate. I want them to test our bodies to see exactly what is occurring when POTS patients exercise and compare that to when we are "at rest" with heart rates in the 150's. There must be a difference in us and those who are "normal", so what exactly is the real difference? Why is the exercise helping some people? Does it really have anything to do with a small heart? Why are we exercise intolerant in the first place?

TXPOTS, please don't take this the wrong way, because that is NOT how this question is meant. But, do you still take your DDAVP and Florinef? If so, then we are back to the low blood volume issue, and then what causes it. Now, if you are NOT on either, then I guess we can assume the exercise fixed everything. It really does make a difference to know if someone is gets well, and still ON meds or OFF meds. It has to be judged by that yardstick.

I think Sue brings in a good point. What is cured and what is better? Are we taking medicines to keep symptoms under control and then calling that a cure? Because in my book that is not a cure whatsoever. A cure is not having to do anything to maintain a normal lifestyle.

Those who are feeling better with all of this, I am extremely jealous. No amount of exercise makes me feel good and I force myself to do the little I get now. I cannot even do leg lifts while lying on the ground before going into POTS tachycardia. This is not exercise-induced tachycardia as I can feel the difference.

Dr. Levine just rubbed a lot of us the wrong way with his choice of words... That's really what it comes down to. We are on the defense.

I completely agree with your entire post.

To add to this...There are now studies that show too much exercise is just as bad as not enough. Who is to say those partaking in this study are not causing damage to their heart? Is this being looked at? Are people being pulled from the study if they are getting negative reactions etc. I assume most of us spend a good portion of our days in tachycardia and I do not think that is a good thing. Does the body know a difference between inappropriate tachycardia and tachycardia from a cardio workout? In my experience, no it does not. Exercise and simply standing up to prepare a meal, give me the same exact symptoms of burnout. Does that mean I sit around and do nothing. Nope, I take walks and live my life as best as I can. In the summer it is much much more difficult for me though.

I have a love/hate relationship with Dr. Mercola, but I found this article very interesting. What might be a normal amount of cardio for one person might be entirely too much for another like those of us with POTS. We are exercise intolerant for a reason (that no one has determined as of yet) and pushing through that may not be good.

http://fitness.mercola.com/sites/fitness/archive/2011/03/22/beware--new-study-finds-too-much-cardio-can-hurt-your-heart.aspx

If you do a little research on this guy he started the "Whoville" study in 2006. It took him until 2011 to find 38 people to fit the conclusions he was looking for. Now this is cherry picking to the extrem. You also find with google search he planted people in his group as members of other forums, and they stir up the same mess they have here.

This guy was also one of the doctors on the paper that set new definitions for POTS, NCS and not one word about small hearts or cures..........hum.

The "whoville" study needs to be looked at as spam or an infomercial, just watch how many posts start popping up selling this crap.

Sue I think you bring up really good points. Our bodies do not work even close to what is normal and as I have said in other threads, even though our hormone levels seem to be out of balance, getting them to what some call "optimal" levels does not cure us. Some feel improvements, but it does not make us better.

Chicken or the egg?

At Cleveland Clinic they started me at supine for 30 minutes because they were getting baseline catecholamine levels. Then after that blood was taken I was raised to 30 degrees for 3 minutes, then 45 for 3 minutes, then 70 for 45 minutes. If you don't faint (I never have) then you will go for the entire duration the hospital deems appropriate. I met POTS criteria within the first minute of the 70 degree tilt, but they kept me to there to see what would happen with BP and heart rate. It was not fun whatsoever. lol At the 10 minute mark, they took my catecholamines too. I definitely recommend having those checked if you are going through all of this.

I think he could have use a better choice of words and been a little more compassionate. He's the one that came out with guns blazing with the grinch terminology, so we are simply responding back. He's also the one that used the word "cure" in his study... This is simply another treatment. Nothing more, nothing less.

Currently I can do this to my skin too. I actually drew a heart on my stomach the other day to show my hubby. However mine was brought on by taking DMPS which is a heavy metal chelator. Before taking chelators, I never once had a rash or hive on my skin so there is some sort of connection there.

I hope you can get some more answers to your questions.

tearose,

Interestingly my heart is also getting larger which is evident on my echocardiograms. I'm probably due to get another one soon, but think it's not worth the $$ at this point.

I was already sort of questioning the person who was quoted in this article and it seems like she is always the one they refer back to...Even Dr. Levine does exclusive interviews for her on her blog. Something just seems really fishy to me about this whole entire thing. Part of me thinks this person was picked to promote Dr. Levine and his research team. The entire blog reads like an advertisement for him... I'll just leave it at that and lets others make up their own minds.

When I got POTS I was 16. What 16 year old do you know is lying around in bed doing nothing? Here's another thing to consider. Are these astronauts disabled for the rest of their lives after coming back from a mission? I'm thinking NO, but I honestly haven't ever looked into this much. I assume they feel a little out of sorts for a few weeks/months and then are normal. That's the important part here. They then go back to being normal.

If I oversleep I actually feel worse, so I try to make myself get up after 8-9 hours.

Mercury disrupts a whole bunch of things in the body. If you start to look into it, it's quite frightening. But as I said there are other heavy metals out there too and it is not just specific to mercury.

I wouldn't expect your blood mercury levels to come back high unless you are getting exposure on a daily basis. Typically mercury only lasts in the blood a very short time and it is absorbed into the tissues and organs. That's what makes it so hard to test for. I did a challenge test, which I'm not going to recommend on here because some people have gotten sick from them. However, that challenge test let me know something is definitely not right. Chelation is sooo difficult on my body and I think the reactions I get from it are proof enough that this is in fact my problem. I may not be able to cure myself, but I need to get some of this metal out of my body. If I lessen the burden, maybe my body can detox the rest on its own. I have no idea! lol

It is a scary thing to think about. I have metals in my body that could be giving me POTS. It is a huge under taking and right now I'm scared about it all. I cannot chelate without getting severe hives all over my body.

I have found that even though a lot of us have low aldosterone replacing that hormone with Florinef does not help with the POTS. I know some people get some benefit from it, but if that was the cause of our issues, then florinef would be our "cure". I've got all the way up to 2 tabs (0.2mg) and it does nothing for the heart rates and heat intolerance.

its good because if you have POTS that would be one of the simplest pathophysiologies to remedy.

Are there any other reasons why methylhistamine would be elevated? I guess this would be something to consider. I'll have to google this one.

Yes I have had this happen too. For me it is just dysregulation of body temp. If it's warm in a room, then my temp goes up. If it's cool, then it is normal.

Aldosterone is affected by salt intake, so it's hard to know exactly what that means unless you were salt fasting. If you were loading on the salt and eating salty foods the day before this test, then I don't know how to interpret it. It's normal for aldosterone to be low under those types of conditions. Renin is another thing you can check too.

Hmmm This is very interesting. If I took a picture of my skin right now and put it on here, all of you would freak out. Chelation has actually caused me to develop dermatographic urticaria and hives pretty much all over my body while I am off-round. If I scratch or rub my skin a hive forms. Before chelation though, I never ever once had a hive on my body and I could scratch my skin without any hives forming.

This convinces me more and more every day that toxins of some type may be the source of these issues in some of us.

I guess my biggest question is...even if you get an MCAD (I've seen a lot of this coming up lately) or UP diagnosis , other than taking anti-histamines, what does that really do for you? I'm sort of past the part of gathering up more diagnosis unless they actually mean something. Like Rama said, do the histamine blockers help with orthostatic issues? I can say with certainty, they do nothing for my POTS. I'm just adding all of this as another symptom of a larger issue we haven't uncovered yet. At least that's my opinion.

What kind or chicken are you eating? I know that sounds like a dumb question, but a lot of chicken at the grocery store have "flavorings" injected into them or they are packaged in a broth. Perhaps something in there is causing an issue?

My mom and her mother both have/had the white patch of hair in the front. Neither of them had any other white patches on their skin, so I think that rules out vitiligo. It only started later in life, so I don't think it is piebaldism, but I'm not sure if it was ever investigated. I'll have to ask my mom. My mom though does not have POTS at all. She is so active it puts me to shame.

Funny story. My mom does not dye hers. As as a little kid, I would always be able to find her in a store because of that white patch. It saved me from getting lost a few times when I didn't keep up. HAHA

Added: I did a little digging and it sounds like poliosis. The cause can be unknown as far as I read.

Here's a link though I found. http://dermatology.cdlib.org/142/case_presentations/poliosis/young.html

The literature regarding poliosis of the scalp has been dominated by case reports. Poliosis has been associated with a variety of diseases, drugs, and lesions. These include Marfan syndrome [1], Vogt-Koyanagi-Harada disease [2], sarcoidosis [3], herpes zoster [4], and alopecia areata [5]. Drugs, including chloroquine, cyclosporine, and topical prostaglandin F2α analogs [6] have also been reported to cause poliosis. In addition, poliosis can overlie lesions, including neurofibroma [7, 8, 9], giant congenital nevus [10], congenital intradermal nevus [11], nevus depigmentosus [12], halo nevus [13], nevus [14], and melanoma [15, 16].

Why this occurs is curious. Is it caused by destruction or dysfunction of melanocytes? Autoimmune and inflammatory diseases can damage melanocytes, and may explain why poliosis is associated with diseases such as alopecia areata, and herpes zoster, respectively. But what about poliosis associated with drugs? What about it overlying melanocytic lesions? Are melanocytes displaced? Do nevus cells take up melanin? If so, then what is the explanation for poliosis when it is associated with nonmelanocytic lesions such as neurofibromas? The pathogenesis is not known and is likely multifactorial.

Biopsies are known for its false negatives. If they don't take samples from an exact spot with damage, then it will show negative. You could have damage in another section that they completely missed and still have Celiac. This study specifically mentions children, but note in the objectives it says they are already aware of the issue in adults and were seeing if it affected children as well.

http://www.nature.com/ajg/journal/v105/n1/abs/ajg2009557a.html

http://www.celiac.com/gluten-free/topic/12697-negative-biopsy-positive-ttg-antibodies/

You really should go completely gluten free and see how you feel on it. The positive blood work is enough in my opinion because those usually don't show anything. Unfortunately if you want to do this, there is no consuming gluten here or there. It is all or nothing and I don't support what the OP did. I understand the frustration with the diet though because I get it too at times. However cheating on the diet is just going to make you sicker, which doesn't make a whole lot of sense to me. I would first be checking every single thing I have been putting into my mouth since the diarrhea started and see if I am consuming gluten. You can't just assume you aren't because sometimes something we had been buying for a while, now has gluten in it. We don't think to take a second glance.

The best way to avoid gluten is just eat fruits, vegetables and meat. I do eat rice btw and don't have problems with it that I am aware of, but I know some people are sensitive to GF oats. My tests were even stranger because I had no reactions to barley, spelt, oats or rye, but only to wheat.

Sarah, I am one that had a 4x high anti-gliadin, but biopsy was negative, so told I didn't have celiac. Of course, the medical community has not "defined" gluten-intolerance, and so they don't know what to tell me with the 4x the upper limit result. I do consume a little gluten here and there, as I can't cook or prepare my own food. So, who knows.

I was given 0.2mg nitro sublingual during my 1st TTT and my heart rate went through the roof (178) and I was terrified. I felt like I was going to die on the table and will never ever let anyone give me that medicine ever again. Just shows we are all different.

Yes I agree with this. As I continue to chelate, smells aren't bothering me as much as they did about 6 years ago. Before, I could not wear perfume at all and now it doesn't bother me! I have heard that taurine, molybdenum, pantethine can help alleviate MCS. Interestingly I have been taking these for a while now for chelation. Do your own research on this stuff though and don't take my word for it. I am not a doctor.

I really believe there is an underlying form of toxicity here in everyone with MCS. Perhaps whatever that is is also causing POTS symptoms. That's my line of thinking these days. If we can figure out the larger issue, then we should theoretically be able to cure ourselves.

Multiple Chemical Sensitivity (or Environmental Illness) is often caused by toxic overload. I suffered from this after living in a house that had hidden water damage and toxic mold. After moving out, I was made worse by subsequent exposures to pesticides and herbicides. If you do have these sensitivities, the best thing to do is to make sure you are living in a clean/safe environment, avoiding pesticides and harsh cleaning products, and eating organic foods to lighten the load on your body. Through avoidance, it's possible to slowly heal and be able to tolerate more as the years go by. I also know of a family that started a rigorous detox regimen under the care of a specialist to help them with their sensitivities. You can find their story and resources here.

I was put on birth control and spiralactin for the high testosterone.

Yes but why is it high. BCP and Spironolactone are just bandaids. I don't understand why these doctors don't look into this stuff more before putting their patients on drugs. Makes me wonder if you still have excessive ACTH excretion occurring which is stimulating DHEA-->Testosterone

Your insomnia really still sounds like it could be cushings. I cannot believe they haven't kept a closer eye on your hormone levels. What have they said about the high testosterone levels? Have you ever had your DHEA-S tested? Seems like there are multiple things going on and I agree getting yourself to a research hospital is probably a good idea.

There seems to be no rhyme or reason to my symptoms... My BP can be low (90/60) and I'm no worse than usual. Meanwhile one day my BP can be really good around 115/75 and I'm highly symptomatic. For me BP does not tell me how I'll feel as my POTS doesn't seem to be affected by it. I didn't have severe orthostatic hypotension during my tilt test nor did I faint yet my heart was 160.

My resting heart rate is usually low (60-75), but there are some odd days I have tachycardia sitting. It's so frustrating at times! hah

Nothing to add to the hormone theory but Dana your post caught my eye. Imagine you and your husband both have pots. 2 of my son's first cousins (boys) have pots, and of course my son.

It certainly is weird...I've had POTS long before I met my husband too, but I think it has to be something environmental. Although my husband was "sick" when we first met, he got worse over the years too. I am now learning my brother likely has POTS too, but it isn't as severe as mine...yet. It seems like everyone in my family has postural issues except my mom! haha My brother is still in his early 20's (21). When I was 21, I could push myself through some of the symptoms. Makes me wonder if in a few years, he will be just as bad as me. He has the heat intolerance like me..That's how all of mine started!

Issie, My husband's estrogen went too high because his doc put him on way too much testosterone gel. Excess testosterone typically gets dumped as estrogen. Once he backed off the crazy dose of testosterone, it has since normalized. DIM supposedly works, but I don't know how much it works. A lot of men with estrogen issues go on tiny doses of aromatase inhibitors. He never did that but has considered trying it to see what happens.