EarthMother

With fingers crossed as you chart out the appt. with nephrologist ... and quietly beginning to hum tune from Love Boat.

Sorry, I can't comment for myself. But did want to mention that my husband started a brand name statin about a half dozen years ago. Within 6 months he had horrid back pain. He stopped the prescribed statin and began taking Red Rice Yeast -- with our Doctor's knowledge. The RRY lowered his cholesteral just as much as the prescribed drug but with no side effects. I saw last week in the news there are some recent positive studies on this natural compound -- which does act as a statin in the blood. A Doctor's follow up with either is essential. I can't recall what brand he uses, but can look it up and PM whoever is interested.

Sometimes you just feel like laying it on the line! In my very non-zen example, my own Dentist's office had been calling leaving messages for a while saying that I am very overdue for an appointment. I told them that I was ill and that I knew I needed a cleaning but that I would call when I was able to schedule something and they need not continue to leave me voice mail reminders. Somehow that message didn't get through to the right person, or maybe the right brain of the person taking the message. Sure enough in a few months time I get another call ... and it was on one of my "bad" days. I picked up the phone and said "Listen! I have a chronic illness and scheduling any appointment is very difficult for me. So yes, I know I need to come in and see the Dentist ... but I also need to schedule my pap test, mamagram, eye doctor appointment and a follow up with my primary care physician and quite frankly you are on the bottom of my list so when I get all of those done I'll give you a call!" Not one of my better moments ;-) and truth be told this Dentist is a gem, I love him to bits and I know he'd schedule me off hours to make things easier on me if need be. But it was just one of those days and sometimes ya' just gotta lay it on the line. There. Now I feel better.

In a recent thread about an article on teens with disabling POTS the writers noted it was a disease that often is time limited and that these young people "outgrow" POTS as young adults. I wondered after reading the article, if we actually have any good longitudinal data on teens with POTS who recover and if there is the possiblity (probability) that POTS come back again in their 30's, 40's etc.? In my own case, I recall having notes in my medical chart in my early 20's like "tachycardia on mild physical exersion." And was on verapamil for years before my first child. However, I was fully functional back then. And though I had crashes up and down for the next coupe of decades ... I tended to 'recover' to a lessor degree each time but had periods of some degree of 'normalacy' inbetween. Until this last breakdown two years ago. So interesting question ... did many of us have undiagnosed POTS as young people and furthermore what speculation do we have on the impact this may have on our current situation. In my own case, I honestly don't know if anything I did or didn't do back then would have changed the course for me. I was given Florinef 15 years ago, even before an official POTS diagnosis (they called it idiopathic hypotension as early as 1992). Nothing seemed to work for very long ... and things seem to wax and wane on their own unpredictable timeline. So who knows? Now this brings me to another interesting question/observation ... what if you have POTS by definition (your heart rate goes up 30+ when you stand up) but you are completely asymptomatic? That is to say, you don't have syncope, you seem to have no negative effects from the anomoly but yet technically you have POTS? We know from that one poorly designed research study with all the healthy army recruits that you can sample thousands of healthy young adults and find a sample population who meet the head-up tilt criteria for POTS. Do these people really have what we know of as POTS? Will they likely have an onset of the life limiting POTS down the line? Interesting questions. I wonder about this for many reasons, but in particular because at least two of my children meet the technical criteria for POTS. Both are very healthy and strong young people with excellent endurance. My youngest does tend to gray out when getting up quickly, but doesn't seem to have any other red flags. Neither are interested in pursuing a diagnosis, because they don't have any negative effects from the way their bodies are compensating. Not now. Who knows what happens down the line? All we can each do is speculate. Hopefully in our hindsight and collective attention ... our insights can lead to answers and better treatment options down the line.

"I feel like a sinking ship and the doctors are rats running off..." I know the feeling. But let's flip this around and see if we can't wiggle a better story out of it, if only for our own amusement! Your PCP took the time to review all of the notes and is feeling overwhelmed (and a bit dodgy of the legal implications). BUT he still wants to help get you in the right hands. The nephrologist sounds like a great next step. Let us set our intention that this new specialist will be a step in the right direction! As I mentioned before, this is about building your dream team, and at this stage you are still looking for your team captain. It might not be your PCP, it may be a new internest that he or your new nephrologist recommends. It will be someone that really really wants your case and wants to work with you and your other dreamteam specialists. Hold on! This ship that is sinking wasn't seaworthy in the first place and there is a luxury liner just up ahead that is waiting to pick you up, give you a tropical umbrella drink and welcome you aboard. And this new ship will take you to the exact ports and places that you need to see! Send a post card, ok? Holding the Love Boat vision for you. ~EM

I love that article. It really gets to the frustration level of the patients, caregivers and invested physicians. Shame it focused only on teens and made it sound like everyone "outgrows" this in a matter of time. Moreover, I have to wonder if there is a longitudinal study tracking some of these teen POTS cases to see if they tend to relapse in their 30's or 40's etc. Thanks for sharing the article. We should have a repository where we could put links to various research and "public service" articles like this one.

Sorry for you, I get these too and can't say I've found anything that works all of the time. But there are somethings that work some of the time for some people. Such as: * Take long, slow and DEEP breaths. Make sure you expand your belly when you inhale and pull your diaphram down towards your pelvic floor. This not only increases the amount of air in our lungs but it gives a little massage to our vagus nerve which tends to get a bit jumpy in a surge. The pushing and pulling of the diaphram as we breath in (and make sure you exhale completely) can help slow down the central nervous system. * When there is a big energy cycle that we can feel in one part of our body ... there is a natural tendency to turn our attention on it and focus on the vortex of the surge. Instead, see if you can find ONE place in your body that is relatively less agitated. It may be a tiny spot on the sole of your foot, or the tip of your nose, or you might feel a sense of solidness in the palm of your hand. Direct your attention to this solid place in your body and just hang out there. Notice how big it is, if it is warm or cold. Avoid the temptation to get pulled back to the adrenaline surge and instead go deeper into this settled place you have found. After a while, you may notice that even the vortex of energy that you felt previously, has changed or shift in some way. * Ice packs. Hot packs. When my ANS goes off ... all of my temperature sensing goes haywire. If I place an ice pack on the sole of my foot or a hot pack on my stomach, it tends to sooth the flare. Some people like ice cubes on their pulse points like wrists or back of the neck. * Sometimes our hyperadrenergic reaction comes on because we've done something to trigger it ... getting over heated, over eating, standing for too long, even normal stresses of the day can trip us up if our central nervous system is over sensitized. If you know the trigger you can counter the duration (sometimes) by getting out of the sun, laying down, having a cool drink, misting water on your body. Each of us have an arsenal of things that seem to help us ... and sometimes we have to use ALL OF THEM! Hang in there ... ultimately it passes, and I know it doesn't help to hear that when we are in the thick of it, but at times it is the best that we can do to just ride it out ... one storm at a time. ~EM

I seem to have horrendous reactions to meds. What I can tolerate, I have to take in tiny doses. However, there are a few that I have no problems with at all like DDAVP and Florinef. Both were lifesavers when I use to take them. And should my symptoms support taking either again, I 'd do so in a heartbeat. I first was prescribed Florinef more than a dozen years ago -- even before my POTS diagnosis! Never had any trouble with it. At some point it seemed not to work as well, and I havn't taken it again now in years. But it is on my list of "good things to try". Good luck finding something that works for you. ~EM

I let my primary care physician whom I have worked with since before my POTS diagnosis, pick my specialists. And if I am having a problem, he is the one I go to for clarification and as needed a new specialist. At times, depending on my insurance, I've asked him to recommend 'the best', who he would see perhaps if he was in my shoes. It may or may not be inside his own medical group. At times it has been things like accupuncture or massage therapy recommendations. Same goes for meds ... we discuss prescriptions as well as herbal medicines equally. Ultimately, it is your chosen team of doctors who must be able and willing to work together in your best interest. When you think you have a team captain that you like, then let them help you create your dream team. It may be your PCP picks an endo and others ... or a new neurologist that makes sense to you picks your general practioner and others. The way that I found my current PCP was to ask my kid's pediatrician. I knew and loved this woman for years through three kids and when I was at my wits end, I told her my problems and said "I really need a good diagnostician. Who would you see if you were in my shoes?"

I feel better on ibuprofin. I only take 1 pill at a time. During my period I may be on it for days (every 5 hours or so). My POTS flares seem to be less (shorter, less often) if I am taking ibuprofin. At times, I get hip socket pain (like when we are going to get rain) and I'll take it again for a few days at a time. As I am aware and cautious about taking this too often, for reasons futurehope stated above ... if I get a headache or mild discomfort, I try and do everything else (hot packs, ice, ginger, aloe, lavender ...) before deciding to take an Advil. But when I do take one, both the pain and level of sympo symptoms subside.

Sometimes it hard for me to discern what causes what symptoms for me. But in a nut shell (mine of course, not yours) I was on birth control pills for over 20 years (accept for three children in between :-) So it would be impossible for me to know if there was any contributing factor of the hormones. As I approached 40 I decided to try the Mirena IUD ... I knew it had some hormone in it, but didn't realize how much ... I really thought I was going to a lesser hormone than the pill. But that wasn't the case. However, the lose dose Mirena did pretty much stop my period entirely. I had no problems with it for five years. However at the end of the five years I did have a serious POTS crash and couldn't figure out if the Mirena was part of the problem. So off hormones I went. That lasted 3 months and as I continued to slide down POTSville my PCP suggested I go back on hormones to try and stabalize my thyroid which was way off (Hashimoto). I tried, the Seasonique which is one of the continious options .... then about another 3 different brands. All the while my symptoms continued to just get worse. Meanwhile, back at the POTS-farm, my Cardiologist insists that I go OFF hormones all together -- because I'm TOO OLD. I'm sure he said it in a much nicer way. But he's right. I was 45 at the time and that was last October. I've been off all hormones since last fall. My periods are now AMAZINGLY HEAVY ... in perimenapause they call it flooding. I couldn't beleive I could bleed that much and still be standing. But I am. And I must say, I don't have any cramping despite the heavy flow. All of my labs are coming back normal and for whatever symptoms I am having now ... I can't pin point my "female" hormones at the top of my hit list. But who knows. Good luck finding something that works for you.

What meds? Thyroid meds? It takes 6 weeks to adjust to a new thyroid dose, so feeling out of sorts while your body is making the adjustment could be normal. However, my own experience with Hashi is that after a wild ride of hyper symptoms (because the Hashi is in rage mode) I can experience a period of Hypo symptoms (after the anti-bodies have died down for a while.) Unlike "normal" hypo-thyroid, which some patients eventually do become with auto-immune thyroid disease (Hashimoto) -- Hashi folks can expect periods of Hyper as well as Hypo. If you are feeling only the Hypo (sluggish, low thyroid) symptoms and these persist after 4-6 weeks, you may want to talk to your Doc about upping the dose of thyroid meds a smidge at a time. Most of us don't feel "good" unless out TSH is 1 or a 2. Good luck.

There are at least one seriously flawed study that reported POTS subjects improved with strenuous aerobic exercise. Problem was these were not "traditional" POTS patients. Everyone in the study was very healthy army recruits. Top knotch, excellent stamina etc. They had no previous diagnosis of POTS or any symptoms. The researchers simply screened THOUSANDS of healthy people and found a bunch who failed the tilt table and then called them POTS. After several weeks of long distance running, this POTS group improved. What nerves me about the "research" is that this study is often referenced in other POTS reports, but they leave out all of the anomolies about the subject pool. Clearly this group has very little in common with what we know POTS is like to live with, and I'd have to believe their etiology is very different as well. That said! I can't "exercise" worth squat, by any traditional means. Standing makes me feel horrid and I get wiped out easily. However, when I got my wheelchair last winter, I realized that I could push myself and my upper body could endure a good "work out" without any of the side effects of POTS. My pulse would go up, as anyone's would who was doing mild strength training, and I'd feel good. My arms would be a bit fatigued afterwards, but it was "normal" muscle fatigue that went away as one would expect. So in terms of exercise, for me, it depends if I can do it sitting down or reclining. I also love situps and crunches (though I will often to strain my back because I tend to over do these a bit.) Keeping tone is important to me ... I figure once "science" figures out how to get me up and on my feet again, I want a body that will be in condition to do it! ~EM

I also can get 'sun poisening' on my chest and it shows up as bumpy, painful rash. Like mkovan, I got it first as a young person in the tropics. With this pityriasis rosea that i've been trying to clear up for over a month now ... I also need some daily sun to fight the virus (rash) on my skin. To accomplish this, I do eary morning sun or very late in the day. I get the UV that I need but less sun damage it seems than if I was out the same amount of time during the peak hours of the day.

You may be caught in a vicious circle. I know how hard it is to eat during these cycles but in my case the infrequent eating prolonged my suffering. It took a good three months of diligent eating every two hours and then another three months after that eating about five mini meals a day before my system got back into a more normal POTS balance. The metformin is a clue that you need to balance this with small frequent meals. It can't do it alone. Sometimes, all I could handle was one mouthful of mellon and one walnut. But that was enough to begin to balance my body chemistry. One cracker with almond butter. Then in another two hours, one cube of whole milk mozerrela cheese and a quarter of a rice cake. Then another two hours ... another nibble. Making sure there was a whole fat and some protien with each morsel. The fat is what helped stabalize my chemistry the most. Hang in there.

Episodic bursts of adrenaline can happen with hyperadrenergic POTS (and in my case also with perimenapause!) Last summer I had this happening all the time ... realized that in my case it was probably in part caused by hypoglycemia. My blood sugar was dropping out at 2 or 3 in the morning routinely. It took me about 6 months for dietary changes to staballize my blood sugar and I don't notice the night shakes as often any more. I will however still wake up with heart pounding after (or during) a vivid dream. Things you may want to jot down (for your own piece of mind, or to collect to chat with your PCP about) is what time it is when it happens, how fast is it going (do you have a heart rate monitor or blood pressure cuff that simple and quick?), how long does it take before it comes back down? What you ate the night before? Sometimes these notes help to sort out what is going on ... sometimes its just something to do while we are waiting for it to pass! Hang in there.

Gosh talking with my mom would cause me to toss my cookies! Take care hun. This is an arduous journey and you like most of us are in completely uncharted waters. Hang in there. You are doing an amazing job. ~EM

I get my aloe vera papaya (the papaya is important) juice at vitacost.com -- because I buy lots of product there -- heavy cans etc. -- and its all $5 shipping. But it is also available at health food stores. Sometimes when I change around my diet, I add stuff BACK IN. At the moment, I am drinking WHOLE MILK, which I hadn't done in years. Another change last summer was to move away from foods with high free glutamates (a form of MSG) the website ... msgmyth.com is loaded with information on this.

For a visual reference, I did a short YouTube last fall so that people can use it to show their family and friends. It gives a little bit of insight with live graphics that may help bridge the gap of what goes on for us behind the scenes so to speak.

Diet is something I have to change up often with my illness. Things that work for several months, years, seem to problematic down the line. When I begin the serious post-pranial symptoms (waves of heat, tachy, shaking) ... I know its time for me to make big dietary change again. I remember one phase when I had a meditation practice with my husband and kids that was after dinner. I was teaching my kids how to quiet the mind and sit with the body very still. And there I was sitting up full lotus for 20 minutes ... with my heart rate 120 and beads of sweat all over my upper body. I still occasionally flare after eating ... not related to a particular food, or volume ... just seems to coincide with the POTS being on a binge. I also never stay upright anymore after eating. I prop a pillow and rest with my feet up. Even with little meals. At one time, I took vegetable glycerin (1 TBL in 1 glass of water) after every meal -- because I think it increases the speed in which food leaves the stomach. Which seemed to help a bit. Now I tend to take 2 ounces of aloe vera papaya juice after every meal. It seems to help dampen the post pranial agitation. Trial and error... Good luck finding something that works for you.

Morgan, Just saw your post after sending mine --- how elegant and wonderful example and explaination. As well as a direct answer to the question! While my own intent is often a crow's path, my actions tend to meander all around the forrest. But that's just how my disordered mind manifests. :-)

I'm not a fan of labels, as it seems to me most people have "addictions" of one sort or another. Some type of neural pattern (habit) that we perform on a regular basis. Checking doors, over-eating, hypervigilance, googlechondria, we all seem to have something ... and no doubt when we "beat" on addiction, another one is there to take its place. Some people "trade up" when it comes to habit practices. Like the over-weight bloke who becomes the fitness guru. One habit for another (both likely a bit over the top). Some people don't even recognize their level of conditioning and certainly don't see it as a problem. Like the always-on-the-move gal who has an imaculate house. Always cleaning, always busy. I often joke, I wish I had THAT disorder. lol There are of course a small percent of truly tortured individuals whose hands are chapped from over washing, who can not meet an appointment on time because they have to DRIVE BACK HOME ten times to check if the door is locked and in these extreme cases there is a constant level of angst and agitation. But aside from these classic cases of OCD ... it seems to me we each cling to ritual and habit especially when we feel so out of control in other areas of our life (like standing!) in order compensate for the feeling of helplessness and to give ourselves the illusion that we are still at the helm. But hey, that's just me ... your mileage may varry. ;-)

I also have a diagnosis of both POTS and CFS. My POTS diagnosis came several years after my CFS diagnosis. It has been my experience that you can have one or the other or both, but that not everyone with POTS has chronic fatigue, as well as not everyone with CFS has ortho intolerance. I noticed for instance, that one of my daughters has postural tachycardia. Her heart rate jumps up as high as mine does from supine to standing. However she is not symptomatic at all. Looking back, I imagine my body was much like hers at that age. My doctors wrote in my chart "tachycardia on mild physical exertion." And this was when I was in excellent physical condition. My daughter jogs, works, goes to school and is healthy as a horse (that is a strange expression isn't it?) In fact, I remember reading a military study recently that talked about screening hundreds of cadets for POTS and they came up with a large number who met the traditional criteria on head up tilt. Again, here's a group of HEALTHY young people who are in peak physical condition. Yet they also had symptoms of POTS on tilt. The researchers then put a pool of these "newly diagnosed POTS" candidates into several groups -- one being a high aeorobic training group. These recruits ran for like 20-30 minutes several times a week. The upshot of the "study" was that POTS could be CURED with aerobic activity. Silly scientists. The problem of course, is that these "sound bytes" tend to get picked up by others who are citing "research" and then they forget to mention that these were all HEALTHY young adult men and women. Hardly what we could consider Dysautonomia patients. Ok, off my soap box. The point that I was trying to allude to ... was that having a technical diagnosis of tachycardia upon standing does not always go hand in hand with an illness like CFS.

Some people can't handle nightshades very well at all. When I was doing food sensitivity testing I went off of EVERYTHING that I previously had been eating. Through the help of my doctor and a licensed dietician who speciallized in food sensitivities ... my diet included amaranth (high protien whole grain), buckwheat (its not wheat and is completely gluten free), millet and a whole slew of other foods that I never tasted before. I couldn't ever eat a whole peeled potato, because my blood sugar would become too unstable. I can handle a small red potato with skin on and lots of butter. Perhaps, given the fact you are having a rough time with your current regime, you could check with your specialist about a "rotation diet". These are traditionally used during a healing crisis. You might eat amaranth and garbonzo beans one day, venison and buckwheat the next day, millet and lamb the third and turnips with buffalo on the final day and then back again to day 1. {I made these up of course as an example -- my diet included the strangest foods at that time. And tho I was vegetarian, I do recall the list included some really strange fish, fowl and game for those who ate meat.} The theory being that most food sensitivity comes from an autoimmune reaction that builds up over time (like eating potatos every day could do). But that if you rotate your food every four days with foods from completely different families, then your body won't have a chance to develop a response. Good luck finding the answers you need for your unique body. Good thoughts that you feel better soon. ~EM

While I was able to work, before 2007, I had massage weekly and I think it did help to keep me going for as long as I was able to do so. However I couldn't handle the "normal" massage with all of the scented oils and direct pressure. Instead, my massage therapist did a kind of "powder massage" that they tend to use on people who are very ill (cancer etc.). It was a very light tough and full body. I could handle this much better than the traditional massage, which for me tended to release too many toxins in my tissues at once (at least that was the theory -- all I know is that it made me sick as a dog.) I also felt very good when I was getting ear, hand and foot reflexology. I could handle the harder pressure on these accupressure points and typically felt very good for a day or two. I find that acupuncture varies depending on the particular practiioner and the ailment you are targeting. A few years back I was diagnosed with vulvodynia and after nine months of no luck with traditional treatments I found a GYN who was also a licensed accupuncturist. She had never treated vulvodynia before with accupuncture, but did some research on articles that had and designed an extensive protocol (like 40 needles from my head to my toes and places you wouldn't even THINK of placing needles.) She told me that I could expect to feel much worse after the treatment for 1 to 4 days. And she was right. I felt awful afterwards. The pain was more intense and I was in agony for about three days. Then nothing. The vulvodynia was completely cured -- that as I said was a few years back. I was so impressed with the success of this protocol that I asked her if she could design something that would help with my dysautonomia ... long story short, she was amazing and we tried for about six months, seeing her once a month for a lengthy session. But nothing we did seemed to make a dent in my POTS at that time. During that time, my husband and I did learn how to do some aural accupuncture (ear accupuncture) ... and while I wouldn't recommend anyone do this at home ... it is something that we use from time to time for pain or other acute conditions. My own sense is, that everyone is different and even different bodies react differently at different times. If you are inclined to try accupuncture, I'd recommend talking with a few specialists and seeing which one you feel comfortable with and then if it doesn't show any sign of improvement in a month or two ... move on to plan b, or c or .... Good luck!