EarthMother

Wow what a wealth of knowledge about medicare. Thanks for sharing your experience. I do have a purple wheelchair with raising leg rests. It is a light weight not an ultra lightweight. I lost my rented wheelchair when we had to switch from an HMO to a PPO this year. So I charged it (I think it was around 500) to my high deductible. I am very exercise intolerant but only when upright. That is to say, I can do my 80 ab crunches on the floor -- no problem. Cool thing for me about the chair, is if my feet are raised (or pretzel twisted) my pulse still goes up a bit when I push myself but it doesn't feel bad like when it raises that high and I am standing still. It took me some months to get my upper body in shape but now I have no problem propelling on my own power. I keep the chair in the car and only use it when I go out. But it would have been a big help last summer when I couldn't make it to the bathroom on my own and had to have my husband push me in an office chair -- or use a jury-rigged pot by the bed. Ick.

Is your calcium supplement balanced with magnesium? The calcium/magnesium channel is like the sodium/potassium channel in thst both must be kept in balance. I take magnesium for my heart rhythm and my cardiologist recommends a brand called slo-mag which is balanced with calcium too. It breaks down into the system little by little all day long. I use to take 3-4 times as much magnesium citrate but as with most mega doses of vitamins, i'd lose most of it in my urine. The magnesium chloride and the calcium carbonate in slo-mag work well for me. The slo-mag -- even tho only 25% of your dailr recommended for calcium, may have enough to support your dietary needs. Otherwise, you may want to see if you can find a different brand of timed release calcium. I use to be dairy-free as well as one of my kids when she was only 1 year old (health issues she eventually outgrew) and with some practice and planning we were able to get ample calcium through our diet with certain veggies and fish (we weren't vegetarians back then). Good luck finding something that works for you.

I have no problem with onions or garlic. My bp never seems to go lower with garlic, as suggested. <<Have you read much about the low-oxylate diet?>> I did low-oxylate diet when trying to cure vulvadynia. It helped reduce the pain greatly.

I get sensations occasionally of not enough oxygen ... my lungs are clear, I am taking slow deep breaths fine, but still my 'brain' keeps processing that there's not enough oxygen in my blood. Hard to explain. But probably in my case due to standing or sitting up too long and being a bit hypovolemic (like a car being down a few quarts of oil) which is likely depriving my brain of oxegyn. Rather than continuing to sit up and breathe slowly ... I try to remember (hard with brain fog) to lie flat on the bed. Even better for me is to bring the crown of my head just over the edge of the foot of the bed and let it fall back just a tad. If I then bring my arms over my head and let them gently dangle backwards, I have opened up the muscularture in my chest and provided more blood to my brain. In this position, many of my POTS rebellion symptoms subside. As for voice, mine changes audibly when my thyroid goes out of whack. And heat sensations ... well menapause gives me the ride of my life in thst regard. I can feel heat inside but remain 'normal' to someone's touch of my skin. I do think I am hypersensitive to even small chemistry changes in my body. Unless one seems life threatening, I jot them down and look them over for my next PCP follow-up.

Rachel, Just wanted to let you know that Jobst does make maternity waist-high compression hose. They are a bit spendy, like other hose made by Jobst. I should think insurance would cover these for sure during a pregnancy especially! Just something to think about ...

I did one of those 4-spit-a-day adrenal tests a few years back and repeated it this spring. Results were almost identical. My adrenals seem to be fine. A tad low perhaps in the morning but still within the "normal" range. I have also had the ACTH push done twice in the last dozen years ... most recently last summer to rule out Addison's disease. I was nervous about the ACTH push -- they shoot you up and watch to see what happens. But my body seems to be able to handle a rush of hormone just fine. Well duh! I get rushes all the time on my own and my body does just fine kicking into high gear. lol Good luck on your office visit. Its important to know how each of these pieces fall into place!

The recommendation for synthroid et al. is to take on empty stomach in the morning. I feel like crap in the morning and not always able to take something right away. I've been taking my synthroid (ok, levoxyl) at night for years. No problems. I sleep like a log. (ok, a log that has to get up and pee at night, but that's not the thyroid meds and I easily fall back asleep each time.) Keep in mind ... thyroid meds work because of their half-life, not because they carry a payload. For instance, you take an advil ... you feel the effects in 15 minutes and it wears off in 6-8 hours. In a dozen hours you likely don't have any ibuprofin left in your Blood supply. Thyroid med on the other hand has a half life that's huge -- it is literally DAYS befores half of it is out of your bloodstream. That's why it takes us sooooo long to feel better on a new dose. The amount we take each day (or night ;-) is insignificant. That said ... do some of us feel the effects of each pill and do better taking it in the morning (as prescribed)? Sure. It wouldn't be the first drug that ANS dysfuction folks have microsensitivity to. Personally though, I have no problem taking at night as my body doesn't seem to recognize the tiny booster in any appreaciable way.

Thanks for the lead Dawg. There does seem to be a lot of published studies on this selective estrogen uptake inhibitor. I wonder how long before we see word from the FDA.

Its a common misperception that the Mirena is 'hormone free'. Or even that it only has progesterin. The Mirena has the same amount of hormones delivered systemically directly into the bloodstream via the uterus as a lowdose bp pill or the cervix ring. The only non-hormonal option (fda approved) is the copper iud, the today sponge (back on the market this month), the diaphram, the cervical cap, and ofcourse male and female condoms. For those considering a permanent solution, there are two fda approved 'new' techniques that place a tiny coil inside the fallopean tube. The procedure, Essure, can be done in the gyn office without anesthesia. Can you tell that I am a perimenapausal woman who's been researching non-hormonal bp options for sometime now? lol The only thing I see on the net about Saheli ... is forums where women talk about who became pregnant while using them. It would be grand if it did work and the fda could get some studies to support its use here in the US.

I go by symptoms AND TSH. If my TSH is 1 or a 2, I won't mess with the dose. But if it is a 4 or a 5 and I feel like crap (either way, tired or wired) I'll bump up the dose to try and knock out my own thyroid production. I have Hashi though and its tricky that way.

All three of my births were very rapid -- like the rest of my autonomic system! Unlike many folks here, I didn't have anything unusual about my deliveries. I made sure that I found a really good OB who wasn't "frightened" by the tachycardia and would be as flexable as possible. We had a wonderful birth plan that we designed together and that he signed that went to the hospital and stayed in my charts so that the nursing staff on duty knew exactly what to expect and how we wanted things to go (and not go). Having a birthing plan spelled out gives you a chance to talk in detail with your OB about what things might come up and how they might be handled. It has to be VERY flexible, but under the best of circumstances it helps to guide the general direction you hope things might go. As I said, my deliveries were really quick --- which by no means implies easy. Think of a traditional labor squeezed into one quick rollercoaster ride. When people talk to me about doing lamaze, I tell them I practiced lamaze too, but in the end opted for the yelling and screaming childbirth method. :-) My last baby came so fast, (no one believed me that they should call the Doctor NOW) that the Doctor wasn't even in the room and all of a sudden we had a baby in my bed! Whoosh! Good luck getting all the information you want to feel confident and the medical tests you need to be reassured. If our POTS has not already taught us about patience and flexibility ... motherhood certainly does.

Congratulations! I know you're not ready to hear that yet ... so tuck it away until you feel the first ripple in your tummy. That first butterfly kiss sensation from inside your body is simply indescribable! My first pregnancy was probably the first time Doctors realized there was something going on with my ANS. The orthostatic hypotension was horrific the first tri-mester -- actually it was more like 20 weeks! I was out of work for the first time on short term disability. Could barely get off the couch. And like you ... I was simply terrified that I wasn't going to be able to handle all of the changes my body was facing, let alone a new baby! But halfway through my first pregnancy everything shifted and I felt less nauseas and much stronger. I was able to return to work and worked right up until the day my daughter was born. My body had a rough go after delivery. Standing up was once again out of the question. So we arranged my bedroom with everything on the floor. My mattress, snacks, a changing table, diapers ... etc. And I just kept the baby with me in bed. Slept when she slept and nursed in bed with me. Eventually, I regained my strength again about three months after her birth and return back to work. We kept the family bed because it was so easy to do with a nursing baby. Turns out, for me, the first pregnancy was the most difficult. Probably because I didn't know what to expect. My doctors cautioned me not to put on too much weight -- which was a mistake for me. I needed the extra volume to handle the new functions my body was doing. I was only 110 pounds at the beginning of my first pregnancy -- at 5'5" I was very thin. I think that's why I did better the more weight I put on. With my next two babies, I made sure my weight was higher (125) at the onset and I was surprised that I didn't feel anything like the first time around. I never missed work, and even post partum felt pretty good. (We kept the family bed for the babies because it worked so well for all of us -- way more sleep, less work, all around.) Like POTS, pregnancy symptoms can turn on a dime. Hang in there, some relief may be right around the next corner. If not, then its surely around the next bend!

Thankyou for the detailed info on the testing. Nothing I was reading seemed to indicate they could diagnose it so straight forward. I've had tinnitus for the last few years. Its not bad, just quite in the background all the time. But during those weeks when that ear pressure would come on acutely the ringing would be much louder. My sense is that I'll wait and see if the acute phase comes again (intense pressure in the ears and sensation of room spinning) then I'll see about a referral to an ENT. Thanks again for the pointers. So sorry to hear how hard this all is for everyone.

I don't have a Meniere's diagnosis, but came across the syndrome when I was getting acute episodic "pressure" in my ears. I can't say its pain, but sudden and intense pressure like you are decompressing or trying to decompress. Then the room starts to spin ... and I have to crouch down. It seemed to last for 30 minutes to a few hours with each attack I first noticed the ear pressure sensation even before I left work in 2007, then it seemed to get much worse last winter and stayed that way for a few months. Can't say its happened at all in the last couple of months though. My PCP checked what he could see externally and there really wasn't anything to be seen -- no infection etc. When I read about Meniere's it said one of the treatments was a LOW SALT diet. I figured that's pretty much a Catch 22 and wasn't very interested in pursuing it further at the time. If it comes back with a vengeance though, I'll have to take another look into it. What type of Doctor diagnosed your Meniere's and are their any treatments that seem to help that don't aggravate your POTS further?

So sorry this bout has been so bad. I haven't been leaving the house for a couple years now. I know what you mean about one system improving as another ones breaks down. Seems we just shift our healing crisis from one set of issues to another. At some points the weight loss and intense nausea are the worst, other periods the hyperadrenergic surges rudely rule my day, then at other times its the knock-me-down-dead feeling of 'flu-like' symptoms that can keep me in bed for days. It seems so common for some of us, I'd like to believe its part of the healing journey. That somehow our body is tidying up each corner of the autonomic system and eventually we will get some of our fuctions back. Its a fine line about how hard to 'push' oneself. I am able now on a rare occasion to get out to a local store -- now that I have my wheelchair. I can only stay 5-10 minutes, nothing actually 'productive', but I think of it as 'exercise' more than anything else. On 'bad days' I don't push myself. I accept that my body is having a difficult adjustment and I tend to lay low and wait it out. But even on the 'good days' when I make a trip to the garden center of the hardware store or petsmart ... my body exhausts quickly and I am literally wiped out for hours afterwards. But I still go, because I never know if indeed 'this is as good as it gets' ... so my goal now has shifted from 'waiting' until I get better to seeing how to 'be sick' outside the house. Or even to 'be sick' alone in the house ... which is something else I haven't done in a very long time. Keep your humor, if it doesn't out right heal you it will be your saving grace. And remember, progress doesn't always look like what we thought it would. ~EM

Welcome to the forum. You will no doubt meet people who can give you much more medical information than I, on your diagnosis and treatment options. From my own healing journey I can say that things DO improve. However, I can not say that I have ever reached my "lowest" because it seems each time I go into a POTS tailspin it does seem to be worse than the time before. That doesn't mean that things are always downhill for everyone. It seems rather that these autonomic illness are at the very least unpredictable. In one moment, everything can turn on a dime -- in either direction! Whether we are having a good day ... or a bad slump ... the phrase "This too shall pass" seems to accurately describe our lives. Hang in there ... its bound to change again. ~EM

Sexual function (or dysfunction) has been a passion of mine (only small pun intended ;-) for most of my life. The history of sexual myths or customs, sex during pregnancy, sexual desire and menapause etc. I often joke that I can't stand up at all, but I am amazing laying down in bed. Humor no doubt plays a big role in all facets of my life. When I talk with women about bedroom issues, I usually recommend being very clear about their situation (wants and don't wants) with their partner. I'm a big fan of discussing sexual relaxations outside of the bedroom. I've talked to dozens of women over the years who were struggling with intimacy issues, including some with chronic health problems and here are the things that seemed to help in some circumstances. * Naked Tuesdays! Ok, it doesn't have to be Tuesday, and it can be more than one night a week. But for couples who are on different sleep schedules or for other reasons are missing time with skin to skin contact, having a scheduled time to just hold each other can really help. Its not about sex. For many couples, they decide in advance that this time is just about closeness. No talking. Just holding one another. For some women, it takes the pressure off of performing and allows us to gradually build up acceptable levels of tactical stimulation. * Different positions. We need to have creative flexibility in all facets of our lives with POTS. Temperature problems (too hot, too cold) excertion issues, as well as orthostatic intolerance influence what feels good and what is a distrator. With some creativity (and occasional giggles) you may be able to find a position where one person can have blankets while the other one enjoys the breeze from the fan. Be mindful of what weight bearing you can do yourself and how much you feel good about assuming. Oh, and be prepared to change ... several times if need be. * Go slow. Women and men reach orgasm differently. If I recall women are influenced by the parasympathetic system more during sex. (But, I could be misremembering.) Our pace may be different than when we were younger or before we developed POTS. If you can't schedule an hour ... consider getting this on your schedule. * Be reassured. In addition to discussing these issues with your GYN, its a good idea to be frank with your other specialists as well. For me, my heart rhythm is always a trigger. Those skipped beats are an immediate 'deal breaker'. So when I had another Holter test last year, I made sure that I wrote down in my journal my sexual activity including the time of orgasm -- I glanced at the clock and wrote it down afterwards ;-) I wanted to make sure the report included notes about my heart function during sex, so that I could put my mind at ease. (I also made notes about doing situps, walking up stairs, being outside ... not just about sex. I used a separate journal with time stamps and details about the activities. It really helped me to see what was going on and when.) Just some food for thought and fodder to begin a conversation of your own.

I can't increase fluids as typically suggested unless I am taking DDAVP ... otherwise I not only seem to pee it all away, but it seems to over activate my kidneys and I tend to lose MORE body fluid than I am taking in. Some dozen years ago (when we just called it idiopathic orthostatic hypotension) my endo discouraged me from drinking water (in volume) because I was flushing out my electrolights. (Strange, I think I was even on florinef at the time.) In later years I drank copious volumes of gatorade. Ended up with systemic candida -- my Doc and I became convinced it was the sugar content in the sports drink. I only take DDAVP now if I am dropping weight. So I don't drink the volume some folks do. I do tend to salt tho, because it helps me keep IN what I do drink.

Cool article, thanks for posting link FW. "The attenuation of MSNA during LBNP supports the concept that melatonin might have a negative impact on orthostatic tolerance in the general population and may be deleterious to astronauts who are susceptible to post-spaceflight orthostatic intolerance." Ramakentesh how might this be related to computer use? ~EM

As always I believe that all we can do is follow our heart and your heart leads you to neuroplasticity (you may enjoy Jeffrey Schwartz book one of the definitive anthologies of Mind Brain and Neuroplasticity). When I first became interested in mindfullness meditation (some dozen years ago) I was motivated by the desire that it would be a healing path. I am by no means discouraging anyone to enjoy the practice ... but rather to perhaps consider that healing may look different than what we imagine before we take our seat upon the cushion. Enjoy the journey.

{{{{{gentle hugs}}}}}}} I've heard stories about people with chronic illness who have had "specialists" suggest Munchausen Syndrome. I'd really like to see someone fake a tilt table test! About a dozen years ago I had an Endo insist that I see a psychiatrist -- I did, and the one that he recommended in fact. After reviewing my history and listening to my situation he insisted I DROP the ENDO and find a new doctor because it was CLEAR to him that I had an organic physical condition that was underlying my problems. I actually heard an article recently stated that things like mental illness (depression, anxiety, schizophrenia) are hereditary and that Doctors should ASK about the MENTAL HEALTH of our PARENTS when they are asking about traits like Cancer or Heart Disease. My first thought was NO WAY! Its bad enough to be told we are crazy based on our own presentation and history ... but to be told its all in our head because the nut doesn't fall far from the tree? No thanks. I think having a life limiting illness is a big challenge for even the most centered and stable person. I also find that having a therapist who understands that I have a physical illness which creates some really hard body sensations to manage can be a big help. In my case, my therapist has been a wonderful advocate in validating my situation which is an asset when it comes to "new" doctors as well as well intentioned but misinformed friends and family. So sorry you had to go through that sweetie. As I tell my kids when they get called a name --- its never about YOU, its always more to do about something inadequate in the other person.

By all accounts I am a high-tech-geek. I could debug my way out of a complex subroutine back in the day ... and I still can every now and then on a "good day". But when I am standing up ... there are times I can't even remember the word REFRIGERATOR as I try and ask one of my kids for help. Those of us with POTS are operating like a car that is down a quart of oil. We simply aren't getting the blood everywhere it needs to be ... and much of the time that is to our BRAIN! Before I understood for myself the nature of this illness, I would beat myself up all the time for not being able to do things. I bought in to all those lies about "not trying hard enough", "not pushing myself further" and worse "its all in my head." Then as I would experience a good day here and there, I realized that when my body is not fighting gravity I can do simple things -- but when I am in the throws of POTS simple things are simply impossible. As a mother I know you worry about finding a balance of compassion and discipline ... but to err on the side of compassion is never a wrong move (in my humble opinion). This disorder will teach your son more about gratitude, commitment, perseverance and patience than perhaps any other life event. Not to worry he is most certainly going to become an amazing adult -- and deep bow to you for being an attentive mother, asking questions, questioning the answers and being flexible to change gears as many times as needed to meet the all the changes he is going to encounter.

When my blood sugar was out of whack last year I would get crazy episodes of tachy and high blood pressure moments as well. As I understood it ... when my body was depleted from all the stress etc. and I missed a meal my adrenals would kick in to high gear in order to produce the epinephrine to release the glycogen from the liver in order to restore blood glucose levels. In my case the "panic attack" would have been brought on by a really low blood sugar level. Did they check your blood sugar at the ER? Or during one of those 7 vials? Sorry you had such a rough go.

I take 88 mcg of Levoxyl daily for Hashi. Supine: 75-85 bpm occasionally I'll get a bit tachy if I roll over, but not lately. Sitting: 85-99 unless I am talking, eating or otherwise "engaged" in almost anything ... in which case it is likely 95-105. Tricky thing for me about heart rate, is that when I am particularly activated my heart rate variance is very wide. That is to say it may be 85 when I exhale and shoot up to 105 when I inhale. And it does this on every single breath. So when I look at my heart rate watch I realize that the value it displays is actually give or take 10-20 bpm! Oh I wish it was an exact science! Good luck getting your dose where it feels good for you. {Good, of course being a relative term.}

I am grateful for my SSDI approval this winter, as it will help me with insurance in another year when that kicks in. But in my case it doesn't add any money. Like you, I am currently receiving long-term private disability payments from my previous employer and the way the policy is written ... it says that if I am awarded SSDI they will reduce my private benifit by that amount. In addition they reduce my benifit by the amount awarded to my TWO CHILDREN who are still under 18. Seems odd on the surface that the private insurance can not only take my SSDI but that it can also take my children's award. You may want to read the fine print of your private insurance just so that there are no surprises. As for me, I am just grateful they are paying. In another few months that one comes up for review, and I'll be back in the thick of red tape and paperwork again. Good luck on your appeal.