EarthMother

I did GABA and also before that LTheonine. If I recall the L-Theonine has a better shot at passing the blood brain barrier. But I did that "new" GABA that claims it does just that. If I recall I was more fond of the relaxation effect of the L-Theonine. But ultimately gave both of them up when I crashed HARD last spring. I don't believe it had anything to do with the GABA.

I am awful when it comes to "guess that acronym" but best I can remember an atrial run is the same as Paroxysmal Supraventricular Tachycardia or (PSVT) PSVT can also be called paroxysmal atrial tachycardia (PAT). Its not an uncommon arhythmia. Atrial runs are defined as being very fast (150-250 bpm) and are triggered by a premature atrial beat. Most of the time they stop on their own. If I recall I had a few during the day I was tested, but none over 7 beats. As I said, this stuff confuses the heck out of me. So it's very well I got this mixed up with one of the other "rare runs" that the Doctor noted on my chart. ~EM

I've had a few 24 hour holters over the years ... and depending on who is analyzing them you can get different opinions. My cardiologist who diagnosed POTS some 5 years ago recently decided to do one (probably to reassure ME since I was having more "skipper beats" as he called them.) I decided to keep COPIOUS NOTES. Not that short journal form they give you. I wrote down EVERY TIME I stood up, went to the bathroom, walked up the stairs, ate food, layed down to rest, even when I had sex (ok sorry too much information, but I REALLY want to know). The results were more helpful in my opinion because we had so much corelative data to cross reference. In my case it wasn't ever a question of POTS ... but boy it was clear to see it charted out. And it was also reassuring that the few Atrial Runs where brief and my sinus node looked to kick in soon. If you decide to do another one, I recommend taking a lot of detailed and specific notes. And if your Doctor approves push yourself a bit to see how you do under various circumstances. ~EM

The other piece that they'll look at is blood pressure. Mine doesn't change dramatically at home from supine to standing (although my heart rate goes 30+) but at the Doctor's office I tend to run high all around (heart rate and BP). Not unusual. I was shaking so much in my cardiologists office the last time I went in to see him that he didn't even both taking my heart rate during the orthostatic test. He just took my blood pressure laying down and standing ... and said "140/95 ... 100/70" Its your POTS and you are having hyperadrenergic responses. In my case he also insisted on NO beta blockers, since I do very poorly on them and it is his opinion that it would make my situation worse. That was last October. I'm now doing a bit better now as the adrenaline surges have died down quiet a bit. Still don't know why (could be thyroid, could be hormones, could be any number of things.) All we can do is try, one day at a time. Good luck at your next appointment. You may want to keep a chart of your blood pressure and heart rates standing and laying down in the morning and evening for a few weeks time. I used this to take to my doctors as we were trying to determine what was happening, and the data helped them to see the extent of my situation, and I wasn't so worried or dependent on a single test in their office. ~EM

My own sense is that we will never find a single one-size-fits-all cause/cure for POTS. But that the dysfunction occurs when a tipping point is reached in the body's system balance. It could be viral, hormonal, chemical, injury or a combination of several things, but it is the one that final breaks the camel's back that sends us off in a crash. That would explain why we hear so many "cures" and "success stories" from people who have tried various things including diet, drugs, exercise, chiropractic etc. Because for them, they found one of the triggers for their unique situation. In my case, a few years back I DID test positive for systemic candida (expensive blood tests including those IgE tests for food sensitivities i.e. LGS) and after 9 months of treatment (diet) I improved dramatically and the blood tests showed no sign of candida in my system. But a couple years later I found myself in another POTS hole, only to discover Candida was not part of the equation that time around. If it is indeed possible that any one of a myriad of causes can be enough to send out system over the edge and we relapse into symptomatic dysautonomia, then it may be we need to pinpoint the specific trigger at that time in order to see improvement. Or just wait for the body's own wisdom to kick in and find homeostasis on its own.

This is a really interesting question. As I did a detailed log of everything I ate for over three months while I was on a rotation diet and then a statistical analysis on the spreadsheet to see if there was any correlation with particular foods and ensuing "flares". But I was never able to pin point a culpret. Some days it seemed like "corn" wold trigger a reaction. Or avocado. Or cheese. But then other days I could eat a quesidilla with guacamole and not have a problem at all. Looking back it certainly could have been blood sugar issues, since that is a problem I learned later that I was having at that time. However, there is another possible cause I came across while reading about "brain toxins". For people who are sensitive to MSG there is a whole list of foods that contain high levels of "free glutamates". In some cases depending on how sensitive you are ... it may not be how much free glutamate a particular food has in it ... but how many free glutamates are in the meal as a whole, or even how many you consumed that day. So in my case, the chedder cheese may have been fine if all of the other foods I had eaten that day were relatively low in free glutamates. But if I was loaded up on these MSG triggers already then any one of the high glutamate foods could have sent me over the edge. Now, I don't even know if these "brain toxins" are real or not. But it does make sense if you apply the same thought/logic to histamine producing foods. If you are already at your threshold than any food that contains histamine producing reactions might set you over the edge on one day but on another day (when you may by chance be lower on histamine overall in your body) the same food would not produce any reaction. This is of course for people who have food "sensitivities" and not out right allergies. If you are truly allergic to peanuts or shell fish this doesn't apply. But for those of us who seem to have reactions when we eat ... but have not been able to pin point the specific allergen, it could be that it is about the overal "load" rather than the individual item. TOTAL SPECULATION ON MY PART! ~EM

{{{{{{{{{{{{{{gentle hugs cma}}}}}}}}}}}}} It is true most of us believe that things will be a certain way. We make assumptions that we will wake up in the morning. That we will go to work. That our LEGS will WORK and carry us anywhere and everywhere we need to be. Then for some us ... we realize the illusion of our situation. That none of us are walking on solid ground. That each of us are skating on thin ice. And of course that things can change in an instant. But the good news is that things CAN and DO change. Sometimes we like the changes (and we accredit them to things like eating well and exercise) and sometimes we don't like the changes (and we blame ourselves, or our doctors for our situation). But maybe, things just CHANGE. One thing we know, is this moment. How things are right now. And it is only in this moment that we can build our life. Letting go of the illusion that we can control everything (or anything in our environment) can actually be very empowering. When we can accept without guilt or blame that this is where we are, we can focus on places that perhaps our "busy" life before did not permit us to examine. And in this curiosity may lie a new dimension and opportunity for wellness. Welcome to the adventure. I know it is not one that you would have chosen. But it IS the one that you are on, and you are among friends and people who understand how difficult this transition has been for you. You are also among pioneers who have led amazing lives even with the health challenges they have faced. And of course we are among good company to meet you. Good luck on your healing adventure. And Welcome. ~EM

That's the problem with the Internet, things go away. And the now very old link to Yaz exercises that I used many years ago is no longer working, as Rachel pointed out above the images are not loading. Seems they linked the images to an external site that is no longer hosting the graphics. And of course now if you Google YAZ you get lets of BirthControl information! If I come across them again, I'll post a new link.

I was diagnosed CFS many years before the POTS diagnosis. It was probably an article like this that I began to investigate Dysautonomia in the first place. There is certainly comorbidity between the two.

I use to get this all the time. It was more than a bit awkward at board meetings. But folks came to just accept it was just something that happened to me and they more or less ignored it. It seemed to be more pronounced if I was excited or anxious about something. Indeed I avoided intense movies altogether, because my system simply couldn't handle it. Last spring, I noticed the shaking seemed to get much worse and lasted much longer after what I had assumed was the "trigger". In my case, it took months for me to figure out that I was experiencing reactive hypoglycemia and the shaking was part of an overall adrenaline response to try and extract glucogen from the liver to rebalance my blood sugar. As I looked back to the board meetings they also coincided with times that I was skipping meals. A few months of a hypoglycemic diet (small meals, no sugars etc.) I rarely shake at all anymore. Good luck finding something that works for you.

I may have healthcare for the next few years until my husband turns 65 in which case he will no longer be able to qualify to participate in his former employer's group coverage. But since he's 11 years my senior, that leaves me without benefits for sometime. Our current medical group is having contract disputes with the insurance company and it could be that I will loose my Doctor (who has overseen my care for 10 years!) So I made some calls yesterday to see if we could purchase a family plan as individuals under something like BlueShield. The agent asked me a few questions and then gave me a quote for how much it would be to cover my husband, and each of my three kids ... I asked her what my quote would be and she said "You will never get health care insurance with your pre-existing conditions." I guess I knew this in the back of my mind but hearing the words brought tears to my eyes. As I said, we have coverage for a few years still, and perhaps President Obama will be successful in healthcare reform and more options will open up down the line. But I was wondering, what do other people face who try to get health insurance (especially after losing their job because of POTS)? If you qualify for Social Security, does that make you eligible for Medicare? Then of course if Social Security declines your disability status ... but insurance companies insist your medical needs make you uninsurable ... seems like a catch22 that many people with chronic illness must face.

Sorry sweetie. Better to know now than wind up with children of your own with this man and find out he isn't up for the journey. I know my husband often has regrets ... because quite frankly I AM WAAAAAY too much to handle! But he loves me. And on those times when things are so hard and I am a puddle on the floor, I ask him "How can you love me, what is there still that is lovable here?" And he touches me softly and says "I love holding you. You are the mother of my children and I will always love you." When you find that person .... it won't be an issue of how much there is to handle ... but of how much there is to love. Meanwhile, know that you ARE loved right now, in the space you are in, by those who are around you. Love is about what we are feeling in this moment ... not about who we are with at any given moment in time. In Love. ~EM

Welcome to the boards. Sounds like you have a very complicated situation. As for the TTT, I have had a couple of these done and REFUSED the injection each time. In my case, (you can see from my YouTube video under "Demonstration of Dysautonomia) I have textbook POTS and my heart rate goes up just fine all on its own. Both of the Doctors performing the tilt tests agreed. Good luck on your healing journey. ~EM

{{{{{{{{{{{{{{{gentle hugs your way Maxine.}}}}}}}}}}}}}}}}} Holding a good thought for your upcoming procedure.

Count me in, I'd like to help with this project. I think you covered the grades/levels well. It would be nice to have some kind of "ability benchmark" that folks could make an assessment at the onset and every few weeks thereafter in order to see progress. Because as some of us have noted, progress can be so hard to see when it is happening at such a slow pace that we often overlook that we are indeed making strides. Something like a questionnaire where they can check off their symptom severity/frequency as well a physical ability, perhaps pain levels and other factors as well. Unless someone has something in the can for this, I can look around and see what I can come up with. Thanks for getting us all thinking about this. That program in OH would have been ideal ... if it had ever gotten off the ground.

Sorry your daughter is having a rough time but it sounds like you are making progress with a diagnosis. I was diagnosed with Hashimoto in my early 20's which is also about the same time they began making notes in my chart about "orthostatic intolerance". We didn't know anything about POTS back then -- more than 20 years ago. In my case, I had many months in a row when I was very ill ... but then I could go for a few years without many symptoms (aside fatigue). It really does seem to vary by individual. As for the nausea, that is really rough. Personally I can do nothing to force myself to drink when it is really bad. Over the summer, when I was in a very bad crash, I would try and sip water, or even use a spray bottle in my mouth to get fluids in. Less than optimal, but that was the lowest I had ever been. Other things that can help are the high compression stockings ... these can cut down on the nausea which allows us to take in more fluids. When I was a young adult, what worked best for me was an orange juice box beside my bed and a half dozen saltines. I would take these before lifting my head out of the bed and I found it helped tremendously with the morning nausea and pain. There is a lot of good advice here on the web site ... and you have a lot of it already here in this thread. Good luck finding solutions that work for your daughter.

One of the Vandy specialists recommends a FOUR HOUR "enriched sample" taken just after a bad flare. (Void once after flare than collect for four hours.) I met with my Doctor last week and we are going to give this a try for the urine methyl histimine levels. I spent two days talking with the hospital labs (very friendly and helpful) to make sure they could run the non-standard four hour analysis. Eventually we got a yes. So I've got my "jug" now I just wait to see when the next BAD flare happens. Its a strange thing ... to be looking FORWARD to a bad reaction! ;-)

The biggest (ok, maybe just the most recent ) food change I made was to reduce the "free glutamate" in my foods. This is like MSG. But there are so many food items that contain "free glutamates" and when I looked at my diet (which included protein shakes and other "natural" or "health" products, I realized that EVERYTHING I was eating had a ton of this stuff. There a lot of info at The MSG Myth Good luck finding something that works for you.

I can't wear the chest straps ... annoys the heck out of me. I'm also not in need of "super accurate" all the time, but I do want something that has a continuous display. Because of that, I rather like the Prevention HR-180PV/MF-180PV Chest Belt-Free Heart Rate Monitor. But this new "light beam" technology is making strides (or at least getting picked up by everyone now it seems.) And there are a lot more products on the market that use it. I bought one this week called the "LifeSpan Fitness Heart Rate Monitor Ring" from Amazon that was selling for $20. Same light beam that the Prevention device that I use. Have no idea if it will work when I stand up and move around. But it was cheap enough that I'd take a shot and see. Good luck finding something that works for you. ~EM

Precisely what I have learned over the years ... ENDO = EGO. I'm pretty sure ENDO is the latin root for EGO as the two are clearly synonymous!

Thank you so much for posting these! I have an appointment with my Doctor tomorrow morning and was looking for a good summary of the current state of research/theories for POTS and this fits the bill to a T! I asked an expert in the field this same question so that I could discuss the test with my Doctor tomorrow to see if thinks it is a good idea to rule this out in my case as well. The researcher said " [the test] is called a urinary methyl histamine level. We usually ask subjects to wait until a bad flushing episode. At the onset of the episode, the patient is instructed to void and discard. The patients should then collect a 4 hour urine sample and send this to the laboratory. The rationale is to collect an ?enriched? urine sample. This is more often negative than not, but this method is designed to optimize the yield." Of course the last section "This is more often negative than not," concerns me ... but it's worth a try. And I'd much rather get some kind of empirical data because I'm not likely to try anti-histimines without any indication that it could help.

It would be interesting to see what a large meal does. If it is even minor fluctuations in blood sugar that could cause a rebound effect. See what happens, and if it seems to backfire try smaller (protein rich) smaller meals in the a.m. I totally over looked blood sugar issues as a culprit last spring because I had always been normal and had no signs of diabetes or any other blood sugar related issues. It wasn't until I was months into my crash that I stumbled onto some information on reactive hypoglycia and that 'what the heck I'm trying everything else'. The home glucose kit I bought at the pharmacy gave me good information (I was really LOW in the morning, with frequent crashes throughout the day) that I could talk with my Doctor about what to do. It took me 4-6 months of changed diet (small frequent meals etc.) before the blood sugar seemed to stablize. Let us know how it goes for you.

Do you have a handicap sticker for you car? Where I live we don't have to pay the meter with a blue hang tag. Even when I was able to work, there is no way I'd be able to walk even a single city block to get to the office. It's important that you got this documented with HR and it sounds like you did. Make sure they understand that the stress this is putting on your body could cause serious health issues for your Dysautonomia. They may not grasp what you are saying ... but they'll have it in your file should you ever need to take a medical leave. Do they have any handicap parking near your building? If not, your work place can speak with the city on your behalf to designate one of the spaces as handicap parking. My employer had additional blue spots added to our parking lot when more of our employees required them. (Gee maybe that was a sign! ) I know it's hard to speak up for yourself. But you owe it to your future Self, to take the very best care of the body you have now. All we can do is ask, in a calm, patient and compassionate way (some version of "I know you may not know how to help, but I'm at a real dilemma here and I could use your added input for a think tank on this problem ..." Good luck, I hope things resolve themselves soon.

Morning panic is one of my signs that I am in a crash. I wish I could say I found a "cure" for it ... as something eventually correlates with the diminishing of symptoms. But if I take an analytical eye on the past two decades, I'd have to say that it eventually just goes away on its own ... often as mysteriously as it came. From my vast repertoire of things that have "seemed" to help in the past ... * compression hose before getting out of bed * 16 ounces of water taken quickly before getting out of bed * eating a late night snack of protein, fat and carb (cheese sandwich, sometimes even with butter, on whole grain bread worked for me) * drinking 8 ounces whole milk ... before getting out of bed * Saltines and Orange Juice * Changing my thyroid level meds (up OR down ... didn't seem to matter which!) * Calming Tea (e.g. chamomile) Unfortunately more times than not ... it was only TIME that seemed to help. The only good news for me is that it does eventually go away, sometimes after weeks, or as with this last crash months ... but somehow the body figured out what to do and things shifted back to a more "normal" POTS cycle. Good luck finding something that works for YOU.

Was the reading done via a finger prick or a vein draw? I know at least one endo who believes a blood sugar reading is not reliable unless it comes from a vein draw. Go figure. Do you have a home glucose meter to test yourself? Is this the first morning it was high? I test regularly now since I started having problems with blood sugar last spring, and subsequently a "pre-diabetes" reading during a glucose tolerance test. I noticed for myself, that if I get very angry or frightened it can impact my blood sugar pretty rapidly. Good luck getting some answers that make sense for you.