Chaos

Thanks for posting Naomi! I liked this one too: Mayo Clinic researchers sent follow up surveys to pediatric POTS patients who were seen at the Mayo Clinic between 2003 and 2010.18.2% of those who responded reported a complete resolution of theirPOTS symptoms, while 52.8% reported persistent but improved symptoms. The remaining 29% hadno improvement or worsened over time. Male patients were twice as likely to report recovery.An evaluation of the mental health of all of these patients was similar to the national norm. I especially like the part about the mental health being similar to the national norm. Seems like males are also more likely to recover in ME/CFS situations. May go back to that whole thing about the female immune system being so much more complicated than males?

Hi and welcome. Think it's hard for people at this age to meet folks even when they don't have our health challenges, but then when you add in those...it really becomes a major issue. I'm states and states away from you, so can't offer to go to the movies or out to tea with you, but I certainly appreciate a sick sense of humor so feel free to socialize here anytime. Personally this site, along with a couple others has become one of my main social outlets (sad but true) on many days when I can't get out to do other things. I am blessed to have family around so that is another source of socialization for me. Family and a few stalwart friends who hang in there with me. Frankly I don't have the energy to keep up with a lot of people so a few friends are all I can handle. Have you enrolled in the Meet Others program...which will shortly become the DINET Connect program... on here? That might help you find other local people near you. Dysautonomia International is a Facebook group that has a world map that people can add patients to and you might find someone on that site as well. Sorry you are having struggles. Hang in there!

Sorry this is causing you such stress. I remember a similar situation at both Mayo and Cleveland Clinic where I went nearly all day without being able to eat or drink because of the testing as it was scheduled. At one point I was in line in the cafeteria to get food between appointments and they called and said "hope you haven't eaten because we can work you in for this test in a half hour ". Argh! But I figured I was there to get the testing and get some answers so tried as best I could to go with the flow. And yes there were some days with nothing scheduled but those were actually kind of nice to relax and try to rest after the whirlwind times the other days. Not fun, but hopefully you'll get some help out of the process and that will make the difficulties you are dealing with now more worthwhile. Hang in there!

Dysautonomia specialists also recognize what's called "delayed accentuated tachycardia" which can occur if your heart rate increases (or continues to increase) beyond the first 10 minutes. You can have POTS and the delayed acc. tachy as well. It's all part of the whole spectrum of dysautonomia I believe.

I agree with MomtoG above....you certainly seem to fit criteria. I know my POTS neuro says you need to meet the HR criteria as well as having other symptoms but you seem to have those as well. Can't imagine any physician who truly knows POTS saying that your TTT doesn't meet criteria, but I had a similar situation with my local cardio who didn't recognize my initial TTT results as POTS. I ended up having to travel across country to see a specialist to get an official diagnosis. Sorry you are having to deal with this stress on top of not feeling well. That's really frustrating!

In the ME/CFS world where they are also looking at the immune system heavily, I am seeing some docs prescribing things like GcMaf, Inosine,and Immunovir . I don't have any personal experience with any of these but you might want to research them. I know several people who have had some improvement with them....especially the GcMaf. The immunologist I see currently doesn't prescribe them, but many of the other specialists in the field do.

I have been the same way for several years with the cognitive challenges. That's one area where I think the antivirals I have been taking have helped the most. Still have days that aren't as good mentally as I'd like when I have physical crashes but overall I think this is where the antivirals have made the biggest difference. This is where the whole ME/CFS and POTS overlap starts getting interesting. There is a lot of documented cognitive impact in ME/CFS. There are SPECT scan studies and fMRIs that show changes in ME/CFS brains vs normals. For example, ME/CFS brains apparently light up whole big areas when asked to do certain tasks whereas normal brains would use a much more specific, smaller area. So it appears that ME/CFS brains are having to recruit parts of the brain differently to process information and perform tasks compared to a normal brain. On certain tasks it's been found that the ME/CFS patients can do the task, but it takes them a lot longer. There are certain types of cognitive things where there seem to be very specific deficits in the ME/CFS brain. And now researchers are wondering if many of the cognitive tests are actually appropriate for picking up the kind of deficits that a lot of us are having. I don't know that there has been much research on the cognitive deficits of dysautonomia/POTS. Certainly seems like it's an area that needs to be researched though because there are an awful lot of us that are having similar kinds of issues.

I know we've had Hispanics on the forum as well. I think dysautonomia probably hits across races and socio-economic groups pretty evenly. Whether it gets diagnosed evenly in all those cases is another matter. I know ME/CFS has been documented to occur throughout all races and socio-economic groups despite it's reputation of being "yuppie flu" that it got back in the '80's. Haven't seen Sugartwin on here for awhile but that was who I was thinking of as well. I know she was having some other neuro issues last we heard from her I believe.

Think it's just like docs....depends on the one you get. I have two sisters who are NPs and I ask them about things long before I bother to call a doc and ask them. They both are super conscientious about learning stuff and following thru etc, etc. However, I've seen a couple in some of my doc's offices that have been totally unhelpful.

I was in a similar situation, although about 10 years older than you when I went to cardiac rehab. I was still about 30 years younger than the average patient there though. A cardiac rehab program, by definition, should be tailored to the specific patient's needs and health condition. In one way, yes, they may expect more of you because you are younger and because a younger heart can usually do more. However all the cardiac rehab programs I'm familiar with have you do testing to determine a safe level of exercise for you to start with. So, while they may theoretically expect more, if your testing doesn't support that then they will have you start where your testing indicates you should start. Also, they usually have a pretty set pattern of progression they have you follow for advancing your program. That was where I had some issues because I didn't follow the "norm" for them. They also had classes on diet and risk factors etc which weren't very appropriate for me as nothing fit my situation. The whole salt loading thing had them totally perplexed. LOL I got some strange looks certainly from the other people there. Most people were preoccupied with their own stuff- just like other gyms. There were several who were very pleasant and wanted to talk so I usually chose to ask them questions and let them tell me about their experiences so I didn't have to try to talk while exercising since shortness of breath is one of my problems anyway. When they'd ask if I'd had a heart attack or surgery (the only 2 reasons they knew of for anyone to be there) I'd keep my explanations pretty short and divert the conversation back toward them. I think when you've had a major event like a big heart attack or open heart surgery it's scary enough that they were happy to keep talking about it.

I don't think insurance will cover 23 and Me testing. It's down to $99 now for the kit though so maybe you could ask for it for Christmas. Sometimes they do specials and it's even less.

Was reading an article the other day http://abcnews.go.com/Health/somatic-syndrome-disorder-mislabel-sick-mentally-ill/story?id=18606406%C2'> criticizing the DSM- 5 which has come under heavy criticism for it's potential for more of this kind of behavior happening. Anyway I was struck at one point in the article when I read that "somatization disorder is associated with sexual abuse and has 37 symptoms". Was wondering if you doctor documented all those 37 symptoms when he made his rash diagnosis or if he just pulled this out of his hat as they frequently do. Might be another avenue you could explore in fighting this? So sorry you have had to endure this on top of being so ill. The LAST thing you need when you're already sick is having to deal with the additional stress caused by people like this!! Hugs!

Or, there may be a genetic predisposition that gets enhanced perhaps when POTS strikes? I know I was never much of a drinker because I didn't particularly like the way it made me feel and sometimes caused a migraine (especially wine). Since POTS hit, I can't take more than a sip without feeling so awful it's not even worth going close to a drink. The 23 and Me genetic testing includes testing for "alcohol flush response" in their results. Has some research on SNP connections that might be related to alcohol dependance but don't see anything that seems to be related to alcohol intolerance yet.

Playing devil's advocate here Issie.... I do worry about this long term antibiotic use. When I had the infection that triggered my illness four years ago, doxicycline was the only oral antibiotic that was still effective against it. Otherwise I would have had to go with one of the "big gun" IV types. My doc said because doxicycline was was one of the older ones it wasn't used as frequently so hadn't had so many antibiotic resistant strains develop yet. However, recently I'm seeing on many forums how many people are using doxicycline for various reasons as somewhat speculative treatments and it's concerning to me. We have very few antibiotics left that still work and once they have been made worthless due to antibiotic resistant strains arising, we're in a boatload of trouble. Sorry, it's just my background of having seen REALLY REALLY nasty infections in the hospital setting that have arisen due to the misuse of antibiotics that makes me super concerned about this. I am really glad you are doing better. I know your doctor is leading the research in this so hope he can get his ideas published soon so other docs can see what he's thinking and hopefully replicate his research. I know there was another thread on here recently from someone about her naturopath telling her to stop her vegan diet because it was too low fat and interfering with her health. When she started adding more fats into her diet she started doing much better, so again it appears there isn't a one size fits all answer for any of us. Since you and I have discussed our situations at length we know that we have very opposite types of symptoms so am just putting this out there for others who read this. Hugs!

I have read in several articles that although POTS is mainly thought to affect people when standing, there are definite abnormalities that can be seen in sitting and even in supine. http://www.research1st.com/2012/03/05/ans-dysfunction/ This link shows some slides of ANS dysfunction as charted for patients even in a quiet sitting position compared to normals. I think it's interesting that the doctor notes that all this was going on and the patient had very little sense of anything being wrong. Makes me wonder what a graph like that would look like when we have these episodes where we REALLY know something is wrong. If we're living with these fluctuations all the time, all day long, I imagine we filter a lot of it out until there is something pretty big that catches our attention.

There were outbreaks in Incline Village (near Tahoe) in the 80's but there have been numerous outbreaks documented back into the 1800's. Apparently they were calling it "polio light" as many times nursing staff at the polio hospitals would come down with it. They even think Florence Nightengale had some version of this. Yes, I definitely think it all looks like variations on the same theme. Hope they start recognizing it as such. Seems like some docs are catching on to the fact that there are clearly overlapping situations here. Wish more of them were. Thanks for posting this TED talks Sue. Last I saw they were up to a significant amount of the financing they need to make the movie. Any exposure we can get would be helpful. Maybe I'll email her and see how much time she might be willing to devote to the POTS part of her disease on film.

So far there isn't one specific test (aka biomarker) that can be used to identify ME. It's kind of like POTS in that it requires clinical symptoms in addition to findings on several different tests and is largely a diagnosis of exclusion. http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full Here is the link to the 2011 International Consensus Criteria on ME where they attempt to define it more specifically than the vague definition of CFS given by the CDC. http://sacfs.asn.au/download/me_international_consensus_primer_for_medical_practitioners.pdf Here is a link to a primer for practitioners with more specific info regarding specifics for which types of tests are helpful for diagnosis.

A headache on one side along with neck pain and stiffness is fairly common in POTS. It's sometimes referred to as "coathanger" pain as it follows a pattern that would look like a coathanger if it were to be laid over your shoulders/neck/head region. I get it frequently and have been having it a lot recently. Temperature regulation issues are also common with POTS. A brain eating amoeba is a real thing, but pretty rare. Most people get them from swimming in open water,, although I guess there have been a few isolated cases recently from people getting them from using tap water in their sinus neti-pot rinse systems. I think those cases were mostly down in LA if I remember correctly. Recommendation for that is to use distilled water I believe if you are using a neti pot or other type of sinus rinse system. Not saying you couldn't have it, but given your other diagnoses, I think you have more likely causes for your headache, neck pain and hot/cold feelings. Hope this is reassuring for you.

Welcome to the forum. Sorry you are struggling with such symptoms. Yes, some people do have an insidious onset of POTS. However, interestingly you also note you have some other co-morbid conditions that frequently coexist with POTS. So, it may be that this is just another aspect of whatever underlying process is going on that is causing your other symptoms as well. POTS is generally considered to be a symptom rather than a disease itself, so most of us are looking for the "cause" of our POTS. Fibromyalgia, ME/CFS, POTS, Interstitial cystitis, IBS, Migraines, Ehlers-Danlos or Joint Hypermobility Syndrome, Autonomic Neuropathy, Lyme Disease, Inappropriate Sinus Tachycardia, Mast Cell Activation Syndrome, all seem to have overlapping symptoms and blurring between the lines as they frequently occur together and run along parallel paths. I think endometriosis has also been discussed on here a fair amount if you search the forum for it. There is an area of research going on now in what are being called "Neuro-Iimmune-Endocrine" diseases and I think this is where we will likely find a lot of the answers we need to address both POTS and a lot of these other things. They are all so very closely linked you can't take them apart. They have to be looked at together and as a whole or I don't think they'll ever find the answers we need. Hope you find a warm welcome and answers to your questions here. Good luck on your adventure!

Beccia- I find it interesting that you do yoga breathing when you have these episodes. I practiced and taught yoga for many years before becoming ill, so naturally went into that habit when I would have these episodes or start to get lightheaded. Ironically slow, deep, controlled breathing almost seemed to make things worse in some ways. Reading Dr. Julian Stewarts work on hypocapnia/hypercapnia (CO2 levels) in the brain and blood with patients on TTT I think he's onto something, but I still can't quite figure out exactly how it all fits with us. Seems like there is a paradoxical hypoperfusion from vasoconstriction to the brain that occurs when we're upright for some reason (in at least some POTS patients). Usually the body has a self preservation reflex where the brain is preserved at all costs and blood goes there no matter what. We're different and that doesn't seem to happen. When you've been in the hospital after these events do your blood CO2 levels run high or low? Just curious. Mine always tend to run high so wonder if my body tries to hyperventilate to try to blow off CO2 as a way to change an acid/base imbalance that occurs. That's one way it can do it, if I remember right. Did you have POTS onset after a viral or bacterial infection? Can't remember, sorry!

artluvr09- yes, it's sometimes very hard to distinguish between panic attacks and the symptoms that POTS causes. Speaking only from my own experience, I can say that many docs and nurses told me I was having panic attacks because my physical symptoms mimic them. Personally I didn't have feelings of mental anxiety associated with the physical symptoms I was having. However, I did have massive drops in BP (like into the 30/20 range) right before having these types of symptoms so I am totally convinced there is a biochemical process that occurs that causes the symptoms. For me, anxiety is not an issue. Since both our emotions and our physical symptoms from POTS are affected by the same neurotransmitters (dopamine, seratonin, norepinephrine, etc) it's hard to separate out which is which. Unfortunately a lot of us get labeled as being anxious or depressed when that is NOT the cause of our symptoms. For some of us anxiety is very much involved in our situations. For many of us, that is not the case and it's very frustrating for us when docs (and others) try to use those diagnoses and treatments which are not helpful and blow us off otherwise. I'm glad they have found a diagnosis and treatment which seems to work well in your situation. More than half the battle in medicine is getting the right diagnosis. Treatment is usually fairly easy after that.....assuming you don't have POTS.

I am constantly amazed that "outside their specialty" means outside their one tiny little area of focus in your body. Eg...go see a neurologist and he refuses to even discuss the autonomic nervous system and will only address migraines. Hello! Whatever happened to doctors looking at a patient as a whole person? Does not the autonomic nervous system integrate have some impact on migraines? Do migraines not affect the GI system (nausea and vomiting?) Does that not have cause "stress" (every doctor's favorite diagnosis these days? ) on the immune system? Does that not also have an effect on the endocrine system? How can they be so blind to all of this???? Sorry. Rant over!

I too have EDS hypermobility as a component of my POTS. When I was talking to my POTS neuro at Mayo at my last appt. he was saying that he's learned over the years of treating "us" that he thinks to some degree that tachycardia is a normal compensatory mechanism for our stretchy vessels so he finds that he doesn't have good success if he's too aggressive with trying to decrease the HR. As a general rule he said he avoids things like clonadine etc and sticks more with midodrine and either beta blockers or florinef for this type of patient. Of course every patient is different and needs the individual tweeking of meds based on their individual complement of symptoms. Ffor example, in my case, I have EDS as a component, but also have MCAS and had a post-surgical (neuropathy) onset along with a post-op infection (immune system) trigger, so there are multiple factors involved that need to be addressed.

I use a manual cuff as well. Got tired of getting error code after error code because my pulse pressures were too low and the machine wouldn't accept it so went back to a manual cuff about 3 years ago. Recently however even the manual cuff is starting to make me wonder if I'm really as weird as it says. LOL My left and right arm are sometimes exactly the same (or very close) as they should be but sometimes are wildly different. For example, right arm was 128/90 and left was 100/80. At the time my left hand was cold and numb feeling and right was warm so maybe that accounts for the difference. Too weird though!

Sorry Becia and anyone else who has these tremors! They are miserable. I had them the first couple of years I was sick but haven't had them for the past couple. Some research indicates that ME/CFS disease changes at the 3 year mark, so if, as some speculate, POTS and ME/CFS are all part of the same spectrum of disorders, then POTS may have a similar course. These tremors etc certainly look (and felt to me when I was experiencing them) more neurological than anything else. Wonder if the woman on the video still has them.