masumeh

Just wondering...could this be related to blood flow problems (part of POTS)? Bc my father has diabetes, and they are always watching his nails bc of blood fow issues (sugar levels in blood block nutrients from entering tissues or something like that). Also, are you on Florinef? I was reading their site today, and it was scary how it can knock the immune system and promote infections... Hope your treatment kicks in soon!

Whoa.... 93 diastolic is really high bp (especially for a person who normally averages low)! You should call your doctor as soon as you can. You will probably need to cut down or drop the florinef...a guess from a non-expert. Florinef (you can google to the product's company sight and see for yourself) causes elevated blood pressure (headache is also listed as a possible side effect). I started it today, and had averse reactions (not bp, but others)...so it's fresh in my mind. Hope you can find a solution. Be sure you do call your doctor about this...high bp is stressful for the system and nicknamed "the silent killer"...and is one reason why many ppl drop particular meds. Good luck again.

Not familiar with this medication. But, I would generally be wary of doctors who prescribe medication w/out any diagnosis! I encountered a lot of those when I first had POTS...I always went and bought the drug, (my drawer became a virtual pharmacy), but I never actually took any of it because I was like, "Hey, this doc doesn't even know what the heck I have, and he's so eager to chalk me up with drugs?" Just my personal opinion. To diagnose you properly, you should be off medication, so they can see your baseline reaction to the tilt table test, the stress test, EKG, ECG. If your doctor did not run these tests on you, I would find another doctor. You can use the directory "Physician List" on this website to find a doctor who understands dysautonomia. Getting a diagnosis is really important...for a lot of reasons, sanity being one of them.

There is a lot of info about depression online, in fact, one nursing class I remember quoted the topic as one of the most widely hit and widely availible topics on the internet (among medical issues). So... there's plenty out there that could help you. One tip is that a depressed person feels bad about herself/himself, it mostly revolves around that. It's not like they feel bad about you, or anyone else around them, even though they may sometimes blame you. Really, the cognitive triad revolves around downing themselves, their past and their future. So, it's NOT helpful to point out the negative aspects of their behavior, for example, how useless and counterproductive it is to sleep all day. It's not useful to "force" or "humor" a person out of depression. They need to talk w/an experienced therapist and perhaps get medication (St. John's Wart is a good option for those who don't quite need the heavy meds). So try to help her feel appreciated, and understand that she probably feels very inadequate and might be prone to interpreting others' behavior as personal and offensive (super sensitive, basically). But depression is somewhat different from person to person. I know it's hard sometimes, as we have always our own battles, to be supportive and put aside our own issues to concentrate on another family members' problems. But, of course, that's what family is for. Don't overextend yourself though. I mean, if she doesn't feel better, it's not your responsability. Good luck.

Get that too... Especially in the first year of POTS. An optomostrist told me that colors (especialy green and red) come from low BP. The sinking, etc. is a "crazy" feeling partly, I think for me at least, because of the disassociation from my body...like a "physical things aren't really connected to me" kind of feeling. But, I got used to it and just ignore it as much as possible. The sinking is one reason why I try to stay upright. Like, when I'm dizzy, some ppl will advise me to lay down (logical), but that will make it worse for some reason. I don't lay down unless I'm ready to go to la-la land.

Just wanted to post the exciting conclusion, lol. After a couple weeks of delay (never happened before in my life), I skipped a couple doses of ProAmatine and my period started. I went back to the pills and it seems all back in balance now.

Hi, I hope you find what you need here, emotionally and information-wise. I joined a few months ago, and I have really benefited a lot. It's really great to have a group of people who truly, and really understand the way it feels, and yet have their own perspective and their own unique contributions, and an easy way of contacting them too. Welcome!

I also have Protien S deficiency. I take Lovenox during prenancy, etc. But it's fine outside of prenancy (I had a PE in my first pregnancy, about 6wks gestation). I recently got in touch with a POTS specialist and started treatment. My doctor told me that the thrombo history is one reason why he prescribed ProAmatine, and told me that it will help prevent future clots. I don't feel more POTSy with more clotting (less p.S). In fact, it's just the opposite for me, but that is a combination of factors bc my p.S def. has to do with pregnancy, and my increased blood volume during pregnancy helps aleviate the POTS. One strange link I read...that the number one cause of death among POTS sufferers is a PE (very different from the general population).

Remember that even normal people's heart rate increases like 15 beats/minute when they stand up. So I think you should concentrate more on how she feels overall, like her energy level. You know a kid w/POTS can't run around like a normal child (right?, I think anyhow). Stomach ache is the classic anxiety issue symptom (psychosomatic). It's vague, yet real, painful, yet not serious enough to bar a child from play. Most kids with school-related anxiety complain of either a stomach ache or a head ache. It's really, really common. Sometimes kids who complain of stomach aches, but feel fine at home, are holding in their bathroom business at school because they don't feel enough privacy in the public bathrooms. Try to see if she goes to the bathroom as soon as she gets home. Also, you know, monkey see, monkey do. We're sick, and we model illness. They copy us with and without conscious intent. My 3 yr old daughter always says she feels dizzy and pretends to faint the day or day after seeing me faint. Hope this helped.

Really great replies... It's always so interesting, the similarities and the differences between ppl's internal dynamics.... I want to kind of summerize so far... people find coping strength in: -letting go -fighting -crying and anger cycles -faith and religion -appreciating new qualities -hope for improvement -love and relationships -dreaming, fantasizing -distracting activities (i.e. internet, TV) -therapy and talking about it -short-term goals -flexibility -new, integrated self-concept am I missing anything? It's all really insightful. I'm kind of seeing a process, like -shock (twilight zone of confusion about symptoms, doubting one's self), then -denial (unrealistic hope for a quick cure, the plan to get well and move on), then -depression (giving up that hope and downing the future), then -anxiety (feeling insecure and vulnerable, always on the alert for the next emergency), then -flexibility (learning to let go, without anxious "if"s or depressed "but"s, setting realistic goals), then -appreciation (seeing how new skills and personality traits have developed along the way, acceptance of the new self). What do y'all think? Does it seem to reflect your experience over the years since onset? I think the first 6mnths is twilight zone, next six months to a year is denial, next year is depression (maybe that starts from the beginning, actually), then third year is anxiety, fourth year is coasting and coping, fifth year is a fully integrated self-concept (perhaps not totally free of regret or frets, but reasonably comparable to any normal non-ill person). Maybe it's not step-like, but it seems to have some kind of process behind it...

I wanted to open a sensitive topic on coping. I have realized that letting go of the old me, the pre-POTS me, has really helped me cope with the disease and accept the new me. I mean, I had to stop mourning the loss of certain activities, friends, abilities, and dreams, and start forming new ones, working around the symptoms. I'm wondering, did this psychological process happen to anyone else, especially those who contracted the disease after a period of good health? Or, how do you guys cope? And for those who've had it since birth, what are your coping devices? I thought this topic might help those who have just developed pots...

Periodic fainting and low blood pressure since age 17 (I was overall healthy, so it was not paid any attention), not really POTS symptoms until infectious mono at age 20. It got much better over the years. I'm now 25. How? I think I was somehow predisposed, since I had low BP, low body wieght, periodic fainting, and IBS already. Then, the mono infection just triggered the whole shabang, (nausea, fatigue, exercise intolerance, dizziness, tachycardia, noise and motion sensitivity, memory problems, etc.). I've read that 30% of people in the developed world are not exposed to mono as children. (In underdeveloped countries, 100% exposure by age 10, 90% even by age 18months; they don't get POTS from it.) For that 30% (like me), exposure during adolescence or adulthood can mean complications, including POTS, it seems from research so far. Mono, which comes from epstien barr virus, is in the herpes family, meaning it rests in the nervous system. No wonder it can potentially cause autonomic nerve damage.

Oooo...I guess I'm gonna repeat that pregnancy test...how wierd... Thanks for all the quick responses. It really helps

Those numbers, exact ranges, should be availible somewhere...but, till someone comes up with that, I can tell you a few things... 55 or lower is hypoglycemia. An endocrinologist told me that when I was being tested for it. I was usually around 60-65, so she didn't consider me hypoglycemic. Perfect blood sugar is 80. More than 250 constituted diabetes. But, my father is a diabetic, and he feels wirey at 110 or 120. He was in the 500 range, I think, when they firs discovered it (he was suppose to be hospitalized, but he fasted and drank tons of water and thereby avoided the doctors). The thing is.... People really aren't the same. There will always be a personal range that might differ slightly from the average range. Like body temp, wieght, etc... So you should also pay some attention to how you feel. Like, if you feel lethargic and ready to pass out at 60, you might still have hypoglycemia. That might be like a 55 reading for you. Like my father feels like that sugar rage at 110... so doctors tell him it's a great number for a diabetic, but he knows it's not right 'cause of the way he's feeling. Hope this is of some help

Oh my! You took ProAmatine for 5 years? How was it? My doctor said I could probably get off eventually, like 7 months or so, if my body responded well. But, the benefits have worn off fast.

It's been a long time since I read or posted...I've been traveling, then fall final exams and papers, etc. I'm visiting my parents' in Virginia (for anyone who remembers my father-related references, yes, things have changed a lot, for the better! . Well...my point: I missed my period (like 9 days overdue). This should have been my first menses since starting ProAmatine (midodrine), and I'm suspecting the meds. No, I'm not pregnant. Really, no way. I THINK! :0 ....no, like by the time I miss my menses, I'm already puking my guts out, usually, and I feel perfectly fine, POTSy but fine. Did this happen to anyone else on medications for POTS? My doctor and his nurses have never heard of this particular side effect. Thanks all!

I've been traveling for the past couple weeks, and am still far from home...so I just wanted to say sorry, now that I have a chance to log on, in case anyone was waiting for a reply to anything I posted before starting the trip. I'll be here in VA, visiting my parents and trying seeing a POTS specialist for the coming month or so...then, back to the sand and sun of KSA Busy, tired, but happy to be home! masumeh

PE stands for Pulmonary Embolism (blood clot that starts in the veins of the legs and shoots up into the lungs, 10% fatality rate).

Sorry, this is so off topic... but, aw, my daughter's name is miriam too...only we spell it maryam

Just a quick thought here... did your mom resist the POTS diagnosis after learning about the prognosis (i.e., no real "cure", probably not about to vanish away)? My husband and mother, two of the most supportive people in my life, both had similar withdrawl type reactions when I told them about how well POTS fits my symptoms. My husband was skeptical from the start, but completely closed the door when he heard that there wasn't any easy "cure" or magic pill. He still "doesn't want to encourage my reading about 'that disease'". He wants to believe that I can be normal one day. My mother was also half-accepting about it until the --what does this mean, is there a cure? no-- part. Then she was just silent. I've been through a lot of "hey maybe this is what I have"s....so I shared their initial skeptisism...but it's paradoxical to me that my husband, my extremely supportive husband who went through doctor visit after doctor visit after scan after blood test after ER visit after (back to the beginnign and through the cycle about 15 times) just couldn't accept the final diagnosis. It's shere denial. It shows how difficult it is on him to think about the possibility that I might have this condition for life. It will take time for him to come around, I believe. Maybe your mother (I did not read the initial post which you were trying to retract) had a similar kind of denial? Did she come around to acceptance?

Just wondering what the long term is like with POTS, what it's like in "over the hill" stages of life, senior citizenish ages, and beyond... I imagine we have increased risk for hip fractures at older ages, since we fall/faint. And I've read that the most common cause of death among POTS sufferers is a PE, that we are not prone to strokes or heart attacks. But I'm wondering still, quality of life wise, symptoms wise, etc... What is it like in the long term. Since most senior citizens don't use the internet actively, this might be the wrong place to pose the question....but does anyone know people who are over 60 w/POTS? Or how about a smaller scale, like 15 years down the road, do symptoms stay manageable, etc.??

When I worked my clinicals as a nursing student, my primary patient was isolated for MRSA (convenient for him, since he seemed to prefer having his own room--there's always a silver lining . I had POTS then, and that was my last semester in traditional college due to my POTS symptoms. I worked with him for a month, and I did not contract MRSA from him. When my instructor asked me if I have any small kids at home, I told her about my highly immunocompromised nephew, who lived with us, a micro-premi still hooked up to oxegen tanks, etc. She didn't worry about it. The problem is that it's resistent to medication (thus the name, meth resistent staph aurius). But, it's not necessarily dangerous to the carrier. My patient was in the LTC facility for Parkinson's, his MRSA was inactive. How's your daughter doing now?

Wibbleway, We've all been there...when I get badly ill, I just try to ignore my body and think, "It's just a day, just an hour, just a minute....it's gone." If you can't go out together, you can still have fun together. Do you like corny jokes? My husband's a corny joke fanatic! Here's one I got off the internet: Learn Chinese in 5 Minutes (apologies to Chinese readers...but read on, it's really funny) That's not right... Sum Ting Wong Are you harboring a fugitive?... Hu Yu Hai Ding? See me ASAP... Kum Hia Nao Stupid Man... Dum Gai Small Horse... Tai Ni Po Ni Did you go to the beach?... Wai Yu So Tan? I bumped into a coffee table... Ai Bang Mai Ni I think you need a face lift... Chin Tu Fat It's very dark in here... Wai So Dim? I thought you were on a diet... Wai Yu Mun Ching? This is a tow away zone... No Pah King Our meeting is scheduled for next week... Wai Yu Kum Nao? Staying out of sight... Lei Ying Lo He's cleaning his automobile... Wa Shing Ka Your body odor is offensive... Yu Stin Ki Pu

It DOES get better. And then it gets worse... better.... worse... better... worse... This is one of the frutrations of POTS, the ups and downs. But, I think for most people, it gets better overall... At least, for me, after the first year or so, it started to become steadily better. One reason is learning coping strategies and consistently applying them (i.e. after reclining, gettting up in a slow, step-by-step process, sit for a few minutes before standing; don't ware yourself out emotionallyor physically; drink lots of water and salty foods w/potassium; if you have IBS or allergies, manage that dietarily; etc.). Your youth at onset is not uncommon; it usually starts before age 35. I was 20, now 25. Good luck! Try to stay calm and relax....it's upsetting, naturally, but it's not the worst thing to happen to a person, and your health has a better chance if you can manage to avoid becoming depressed. I was really depressed in the beginning (I had just lost my first pregnancy, had to drop out of college due to fainting and fatigue, had a big ongoing conflict w/my dad, and didn't know where the health problems were coming from). It's really great that you found out about POTS so early. I suffered for more than 4 years with a "mystery" illness, and now I'm so glad to finally know. Believe in yourself! You CAN get better....and even at the moment, pluses probably still outweight minuses... right? Just give yourself enough rest, staying as active (and I believe upright, physically sitting if possible instead of laying down all the time, bedrest means bp will drop even for a healthy person) as you can tolerate w/out getting fatigued. Keep your friends around you if you can...mine seemed all too busy to drop by, but I think it was partly because I was too proud to scream help...too proud to have them over when I was too tired to clean, cook or hostess. Just make do....it really helps to accept limitations and make do. That's my current philosophy anyway, and it seems to help me. An old friend of my mother gave me good advice at my baby shower, because it's hard to care for an infant, sometimes in the middle of the night the diaper duty, the projectile vomiting (that lands on you:), the crying, etc.. She said, "Learn the phrase, 'This too shall pass.'" That has helped me with POTS too.. just pure unadulterated patience. Again, hope your condition improves soon!

Doctors have egos too...they don't necessarily like being second-guessed by another person in their own specialty. I wouldn't necessarily tell the first doctor about the second one unless new results are discovered. For the depression, there are so many treatments, other than chemical therapy. For example, there is a sleep program, they avoid REM sleep by making the person sleep early and wake up in the last part of the night (last part is high rate of REM). There is shock therapy. There is cognitive therapy. They all have about equal statistics for recovery rates. Don't ignore the social factor too...social therapy is the funest....go out with your friends and keep smiling at them!! Hope you feel better soon.