masumeh

Thanks for the replies. All very helpful. I also got a chalky, fat, pill that disolved at first contact with liquid (a couple times in my throat or just before my stomach and gave me horrible stomach problems as well as heart burn, etc.). That was the US pharmacy brand (Pro-Amantine). But it also worked the best. Then there was the tiny orange pill from Australia (brand name Amantine), ordered online. That was really good...better on my stomach, easier to swallow, really good. Only problem is it takes about 20 days to get to me, bc it goes to my mom in the US, who has to send it for like more than it costs to Saudia. This Austria Gutron is like the chalky white one, but without hardly any benefits. It's good to know that someone else has heard of Gutron....I was beginning to think it was a fake or something. It's just the easiest to get, the only midodrine product I've been able to find so far here in Riyadh. I've never encountered a blue one. That might be a good try....usually the leaflette has the brand name printed somewhere, if you don't mind looking it up? Thanks again, to both of you.

O my! I'm so excited for you This is a wonderful time...the most nervous time of your life maybe...but it's so wonderful expecting a long awaited loved one....a baby! Hehe. Ok....ummm...yeah, the laxitives... Lol. The baby laxitives are usually effective and MUCH more gentle than the adult ones. There's one that just contains sugar water...I think it's the most gentle. But, did you try prune juice? Here's a secret for induction....my friend was like a week overdue.... her OB/GYN told her that the "natural" way to induce labor is to have full intercourse. She said it worked. Also, stimulating the nipples by rubbing will produce oxytocin, that leads to contractions also (this is why oxy nose sprays are used to check baby's response to contractions, in cases where the womb is suspected of being --what's the word--- where it's not providing enough nutrients to the baby anymore due to the woman's age or the lateness, being overdue, etc.....they induce gently with the spray or the rubbing....and then see the baby's hr reaction). Good idea to get the baby out soon...because the lining does start to decay. Good luck with your labor and delivery! I'm sure it will go well, and we'll be getting great news soon!

Thanks for the warning about the midodrine. Otherwise, I probably would have tried it. Ice could sound very good here in Saudia I've tried pomegranate juice, butcher's broom pills and licorice pills for natural remedies. But couldn't take much of any, due to tummy aches. Glad you found a tactic that works for you! masumeh

Hi all! Quick technical question... Does anyone on Midodrine get their meds from factories in Austria? I am in Saudi Arabia, and I've tried a few different sources (US, Australia). The most easily availible to me is the latest try, from Austria, and I am beginning to think it's a placebo or something...I am not getting my usual benefits. The brand name is "Gutron". Ever heard of it?

Are SSRI's all the same....no. But here's a ?....do you have to take an SSRI to ease PMS symptoms? I mean, is that your only option? There must be other categories of drugs availible, since it's an endo thing...right?

I used to have strange "episodes" that sound somewhat similar to yours. I would get weakness, heaviness and hot in my body. It seemed like it often happened on the way to the bathroom....but not always. I was actually able to cut down the frequency by going to the bathroom as soon as I felt the need. Another similarity, they always lasted exactly 45 minutes. I would be out, but I could hear. That's the way I knew I wasn't asleep. Otherwise, I was disoriented, couldn't feel anything in my body, couldn't see, speak or move, and turned freezing cold (and others describe me as turning stiff) and sometimes had convulsions. I would come out of it clenching my teeth (maybe your jaw feeling is similar?) and sometimes sore from things I landed on or how I was laying or whatever. I have no idea what my bp or hr were during those kinds of episodes because they happened for a couple years in the beginning of the illness, and that is a long time ago now. But yes, they really were freaky, to me and everyone around me. I would also see lights, or other strange visual disturbances before....and I would be extremely fatigued after. It never really did me any damage. But I think, like most other kinds of "episodes" that POTSers describe, the body has an adrenalin overload sort of shock reaction, which means high sensitivity afterwards...and that can become a cycle....so it's best to get with your doctor to try to stop them, so your body has a chance to heal. This is not a medical advice....but, I think that if your episodes are the same as the ones I used to have, going to the ER is useless....not to mention financially draining. It's hard to just let it pass....but I used to get these up to 5 times a day, and nothing more than the episode itself ever happened to me. I had two during a 24-hour halter monitor, and all it indicated was sinus tachy. The times when friends and family pushed for the ER were draining, because sleep is very important for POTS, and the ER means a night without sleep, waiting for test results that mean nothing. But you should talk to your POTS doc about it.

Congratulations!!! Wonderful news. I hope you have an easy pregnancy and a beautiful, healthy child. Since you said you've been through it before, not much I can add. It's all just from experience for me...didn't read anything particularly on this topic. But my pregnancy w/my daughter was packed full of faints, tachy, etc. Didn't hurt her either...thank God. I did lose one pregnancy before her, according to my hemotologist, in part due to clotting during pregnancy (liver dysfunction)....but I take blood thinners after that. Hopefully you don't have this problem. But w/POTS, I guess it's worth checking out.

Sounds a bit different from what I experience. But I do get enormous pressure (sometimes resembles pain, but on a headachey level) in my ears when I change positions. It's from blood flow issue for me. Sometimes it even pulsates with my heart beat. Sometimes I actually hear it too. Sometimes it even jiggles my visual field simultaneously. But the pressure feeling in ears....definately blood flow. For you, since it's persistent, maybe there is something else going on. Mine goes away after a few minutes (or I faint, either way it goes away pretty fast).

this is a sensitive topic, it seems...and for many, an important one. Just wanted to add a point about the "record" issue. Have a close friend with GAD, PTSS, and it seems hypochondriasis. While she does often seek medical attention for "physical" sensations which are overblown due to her anxiety disorder, every time she enters the doctor's office, they should take her claims seriously and investigate them properly. She goes home with a bill of health, totally unconvinced that she does not have some kind of complex disease. On to the next doctor, after reading about the symptoms and becoming even more descriptive about her "sensations". X-rays, blood tests....clean bill of health. Ok....now she's on to the next "disease" that a friend or recent news report brought to her mind. The cycyle begins anew. She's healthy, other than her pscyhological disorders. I know how debilitating her disorders are....they are much worse for her life than any of the trivialities she claims in doctors' offices. But the one doctor she refuses to see (until she is completely hysterical and hellucinating, etc.) is a psychiatrist....the one doctor who could actually help her. I think it's probably plain to anyone how this would get tiring for the medical doctors, and expensive for insurance companies, and how there should be some kind of a solution. But at the same time, she does occasionally have valid physical complaints. Then, it's "The boy who cried wolf". Once she had an allergic reaction to a drug/medication, and was initially denied treatment due to the fact that her symptoms were immediately labeled "an anxiety attack". As the problem progressed, the allergy became clear and doctors started to treat her. Just wanted to mention this story to show both sides of the stigma....the truth of it and the falsehood of it. She does have a valid disease, and should seek treatment, but from the right doctors (i.e. psychiatrists rather than primary care or other doctors). But her abnormal behavior in seeking medical attention for imagined symptoms, although this in itself is a disease, is ultimately disruptive to her medical care. Probably, since the process is much like that of investigating a rare disease or "mystery" illness, her behavior (and the same behavior that many others in her mindframe perform) also disrupts the quality of care, attention, and seriousness given to truly physically ill patients who are yet undiagnosed (with POTS or whatever else the medical world is not aware enough about).

Feel better soon, Flop! Sounds like your surgery was a real doozy (sp?). Take your time recovering...you deserve a good break from the day-to-day.

I think it all has to do with blood flow...like the same kind of "deconditioning" we can plainly observe in our muscles might be occuring in its own way in other systems within our bodies...bones, brain, etc. My doc didn't test my VD, but suggested that my bones were "probably" weak just like my muscles, although it was not as easily observable, and prescribed something like 4,000 units/day. I have pill problems, so I just take Flintstones kids' stuff...and try to get some sun sometimes. The thing bones, however, is that even if your blood stream is full of the right chemicals, it won't enter your bones without pressure and stim to the bones through vibration related to walking. That's a factoid from my nutrition class.... Um....your "symptoms" that are disappearing after 2 days on VD....I'm guessing that's not a bone thing, huh? What are you taking VD for?

Yikes...hope you feel better soon, Tearose....root canals are horrible

Speaking of stigma, patience, and dealing with chronic annoying symptoms of any kind.... (otherwise, this might seem really off topic, but here it goes).... Did anybody see the movie "A Beautiful Mind"? I really love that one.. It won the APA award for reducing stigma. Thank God, I'm not schitzophrenic...but I think we can ID with it anyways, because he just keeps trying despite his symptoms destroying his career, mind and relationships. I love the line, "Maybe just try again tomorrow."

Only tooth problems I've experienced were most probably related to malnutrition and acid resulting from hyperemia during my 2nd pregnancy (lost part of a molar, just fell out ) But did you try calcium/VD suppliments? My doctor gave me some due to the POTS. Here's a happy thought though....it's actually better not to have teeth when you are elderly....it's easier for dental and mouth care! (A surprising fact I learnt in the LTC during the nursing clinicals). So you might miss them now....but you might be thankful they're out of the way later on!

Hmm...I'm trying to find a response...."have you had such a hard time with it?".... Mine started in such a different way compared to yours. I fainted before any other symptoms came to light. And in the beginning, there was no pain (except head bumps), and the doctors originally told me it was related to my pregnancy (first pregnancy)...but later we found it was POTS and it was actually a mono infection at work on my ANS. In fact, within two weeks from the first faint, I was completely bedridden, and was soon hospitalized with a PE, developed nosocomial (sp?) pneumonia, hyperemia, and then miscarried. The symptoms didn't pass with the child, though. And there began the mystery illness....4 1/2 years of questions. So for me, in the beginning, it was just like, "Whatever...if this is going to be a strange pregnancy, Ok....I can deal...." But later, it was like, "What the @$@%$^ is up with this fainting (#(%#)$*@#(*.." It caused me to drop out of college....and I was in one of the top 10 nursing schools in the world.....but life it not what we plan for ourselves....no matter how hard we fight for control....our circumstances will always exert significant influence....but WHO we are depends on HOW we adapt, not WHAT we achieve. I believe so, at least. I AM NOT my disease....I am the patience that responds to it. I AM NOT my failures....I am the happiness that triumphs over them. I guess it's all attitude....but every day is a new challenge...and some days are better than others. The first year was really hard. Now, it's usually just there in the background somewhere....thanks in part to having this forum to drain the pain. (Thanks everyone!)

Hmmm...passing out...how do I begin? It's happened to me more than 1,000 times. I actually take it in stride most of the time now; but that was a long process coming. Cardiatec, you obviously have the technical side of the event down pat...and more so. Here's a bit on the psychological/phenomenological side of it: -remember that when you are about to faint, fainted, or recovering from complete unconsciousness, you cannot be totally aware. you will be somewhat disoriented and unaware of some of the events your body experienced. it helps to have a witness, who is observant and cool headed, to tell you, like "oh, your head hurts? that's because it banged the bedpost on your way out." this dysorientation can cause you to do strange/unwise things, such as take the stairs, continue standing, etc. just before the faint. it can last up to an hour after the faint (so let yourself rest, don't do any important mental work just afterwards, drive a car, etc.). -also, it's scary, in the beginning. but the more you calm yourself, generally the faster it will pass. try to think of something funny, to laugh, etc. it's almost impossible to think straight, but it helps to laugh it off. the panic aggrevates the disregulation of the hr. the "dieing" feeling is a result of the HR, Jamesian emotion theory: the physical sensation precedes the cognitive explanation...but you can help your ANS through top-down processing, by logicizing yourself out of the Jamesian effect. So, you know the HR is not going to kill you, so you know you are not dying, and that should help calm you down. You must learn to get up more slowly, in a process of sitting first (for a few minutes), then standing (if necessary, with the back of your legs touching the seat for reassurance), then walking. Give your body more time to adjust to the change in posture. As for the associated pain...I felt that a lot the first year or so...during that period, I was very frustrated by the faints, and I was constantly struggling against the faint during an episode, trying hard to come back, testing myself to move, etc...I believe that these efforts caused much of the pain (bc at points, some parts of my body worked and others didn't, and it was a strain on the working parts to complete the functions alone). I learnt to relax, totally give myself over the faint, and that helped to reduce pain and also to shorten the length of the semi-consciousness between blackout and total recovery. Maybe my body itself also adapted to the faints....the tachy ones, at least. Chemically, your body goes into shock, there is too much adrenalin, and it primes your nerves for sensation (so a touch might feel uncomfortably electric, a sound might cause a headache, motions might send your brain aspin and even feel like a seizure, lights flash, etc). Good to give yourself some release time, in a dark, quiet place after the faint. One question, you said your doctor explained this development to you by the "progressive" nature of POTS? I was under the impression that POTS itself is not progressive (although some of the underlying causes are). I contracted POTS from a virus (about 5 years ago now), and it got better, actually, over time....went from bedridden to wheelchair bound to semi-functional, now almost fully functional. So, maybe you and your doctor should look for a different explanation if you are regressing....maybe it is a side-effect of your medication...or maybe your meds are masking your previous warning signs, so you are not taking the measures you used to (drinking water, sitting down, resting, etc)? ?? Well....in any case, I know it's a major stress to regress in any form....it's one of the most frustrating things...so I hope it's a brief and temporary stage for you.... Feel better fast!

First time posting a poll question....but it's been bugging me. For those taking medication related to POTS, who also suffer from symptoms related to loose joints (like subluxation-dislocation, etc.), did you notice any before-and-after differences correlating to being on and off medication? If so, please elaborate if possible in comments...and also please note which medication you are taking and what kind of joint hypermobility you experience.

Hope these post-op symptoms are just the strange stuff and anesthesia and pass as strangely and suddenly as they showed up. It's often the case. If it's limited to her hand, I'm sure it will fade out, hopefully. Take care Flop! Get well soon.

THanks for all the great ideas and ready support! It's interesting that 4 seems to be the age, the time when energy is high but the kid is still out of school. Day care isn't an option here in Saudia...but I think I might be able to make a more stable arrangement with some extended family. I always liked reading child care books to find the "right" developmental games and activities for my daughter...but now, it's just all different because -thank God- she has so much more endurance than I do. She likes dolls, and creates intricate games and scenes with her stuffed animals...I think that could be a time when I could play an act laying down (maybe I could be the mote of the castle?). Crafts sounds like something she'd really enjoy...although I am an ex-girl scout, and my mother was the GS leader, and well....can I say I do not like crafts! My daughter does have an art center in her room, and she is so used to independant play, she even cleans it up herself! Well...I have some more ideas now...and something to consider about creating a better support system. Thanks again! masumeh

Like that quote...."Today is tomorrow I worried about yesterday, and all is well." Nice thought! Here's my two cents... It all depends on you. How long can you sit up, walk? How frequently can you go out per week (without detriment to your overall level of function)? Are you a self-disciplined, critical reader? In-class courses are more physically demanding...at-home tutorial courses (online or print-based) are more intellectually demanding (because it's all you, you are both the student and the professor, with only the textbook to inform you about the topic). Both take about the same amount of study time. I've done both, but the traditional style only worked for me when I was healthy (pre-POTS). I'm all DL (distance learning), but it is slower this way because I get so sick of the books!! Having classmates and a superimposed schedule is a big help for pushing a higher pace...but not possible for me. Hope you find your niche! masumeh

Just wanted to see if POTS moms here (especially the severely symptomatic ones) have found good ways to stay interactive with small children. I find it difficult these days, as my daughter nears 4 years and her energy level is quickly overtaking my own. I'm trying to find ways to play with her laying down. We have a couple games, like tickling, bouncing her on my legs. Other than that, I'm feeling fairly useless on bad days. She is getting frustrated too...she hates it when I lay down, and she is often left alone to play if I get knocked out from whatever. I'm constantly having to shush her and ask her to play in her room when my stimulus sensitivity is high. Feels guilty...although I'm doing my best. Any ideas???

Opposite thing here too... When I notice that my feet, nose and fingers are abnormally cold (in comparison to room temp), it's a reminder that I forgot to take my med, and I should be careful getting up to take it (due to black outs).

Play with my daughter...this forum...other internet stuff...reading (I like non-fiction and maintain a pretty good library at home)...bother my husband on the phone...go to the roof (it's flat w/walls) and look out at the city...call my parents...look at interesting pictures (usually I get "bored" as in want to SEE something interesting)...eat...Skittles...very...slowly...sit with my mother-in-law across the hall...water the plants...laundry and other household chores...occasionally hobby writing/composition...drawing dream house floor plans...making other ridiculous plans...look up jokes online...stuff like that.

Most ppl seem to understand fatigue best in terms of what the person CAN do, rather than how it sensationally feels. Like for shortness of breath, I kept telling doctors it's hard to breathe, I can't breathe, I feel winded, it's as if someone belted my chest so I can't take a breath really well....they just bypass all the "feels like this" description (which, by the way, many doctors hear psychological/hypochondriasis symptoms in detailed "feels like this" complaints rather than believing the physiology of it) and they ask, "How many stairs can you climb before you feel out of breath, stop for air, or start to breathe heavily?" When I say, "STAIRS! Oh my God! Like, maybe two." Then they finally understand (believing is different, always). Fatigue...It helps to describe also in "I can do...before I have to stop due to fatigue" terms. Like it seems to turn the light bulb on in a listener if I just say, "If I vacuum and wash the dishes in the same day, I will faint." I guess the fact that I faint so much and so easily makes it easy to show ppl how tired I am...although they're not necessarily related.

Welcome! Just one thought to add to the previous replies...if you have been fainting since childhood, then your doctor might be able to find the cause, if it is genetic/familiar or if there is malformation detectable on an MRI x-ray. This might help you identify possible treatment routes. Many of us get it after childhood (teenage years or adulthood)...I think usually in late onset cases it follows a viral infection or accident involving whip lash action in the neck. But, for the childhood onset, (those of you who have childhood onset, plz correct me if I'm wrong), seems to me from reading pplz stories, they generally have the kind of abnormal nerve formation that is visible on an MRI scan. It could help to know how. It might not really make a difference in the end, but some ppl can get surgeries in the neck that can help. Anyways, welcome to the forum!