masumeh

As always, there is something very interesting to me coming out of these posts... I wonder: How many of us have been romantically manipulated by dishonest men/women --not despite our illness and volnerability, but BECAUSE of it?? Did anybody every read "Nobody Nowhere"? It's the autobiography of a severely autistic woman, from childhood to adulthood. She runs into more than a few men who take advantage of her illness and lack of social support to achieve their own selfish aims (i.e. steal her money, use her body, get kicks off feeling superior, insulting and degrading her for their own self esteem booster). I wonder how many sociopaths like this we meet every day... Scary...no, hope for good in ppl masumeh.... But really, several of you have had the experience. How can we tell the nice person from the shallow swindler?

From my experience over the past 4 years, and from what I've been reading, POTS is NOT progressive. That might be the best/only really good news about it. Your symptoms could get worse or better, but it's not the kind of disorder that trails down a meandering path to the grave. No, it's a syndrome, a set of symptoms which, depending on the cause and that differs from case to case, do not get worse or better indefinately. It's just ups and downs for life, it seems. That's how I conceptualize it based on my past and what I've been reading. I could be wrong. But, it seems like we all go through these 'flare ups' and flare downs, depending on other things in our lives (i.e. stress, illness, extra job or home demands, medications, pregnancy, etc). The first two to three years I had this disease, I would get better, then regress, back and forth. The fourth year I seem mostly to have stablized, but that may be due in majority to developing stable coping strategies (like getting help with house work) and other factors. But I read somewhere that it takes about 4 years on medication to really recover to the person's potential functioning. I never took meds, and the same timing seemed to apply to me. Hope you get some rest and have good days soon!!! Masumeh

You should really discuss it with your doctor, and if your doctor doesn't know, you should try a second doctor. But did you ever think about St. John's Wart? It's a natural, over the counter, herbal that relieves depression for many people. I have a friend who takes it, then I read about it in my psyc texts, and I recommended it to my sister-in-law. She has had major depession on and off for almost her whole life, but she took this for three months and since then she has been good for a whole year. She's enjoying life again. So it really works, but you always have to check about drug interactions.

It must be a difficult balancing act to fight both POTS and bipolar disorder. I have a close friend who is very bipolar, and she really goes through a lot, even after stablizing on the right meds. Keep fighting!

I've never heard of this disease before. Hope you and your doctor can find the right treatment for you!

Don't know if this is helpful...I've never dated bc I'm an orthodox Muslim...I married a friend from my Mosque and we've built our relationship from the beginning based on our shared religious and moral principles. It's all about trust and friendship, and working together to make a home that promotes each individual's happiness in this world and the next (each, including children, we have one daughter). So my perspective it totally from the outside....but that may be more accurate, or less, in some ways one and in others the other. Anyway... I think that when a person cheats on his/her SO, it shows a deep lack of consideration for the relationship, the trust, and the other person's feelings and well being. It can also be due to severe lack of maturity and lack of self-control. This of course depends on the person's (and the SO's) values concerning fedelity....some people really don't care either way (for themselves or their SO). That's just a different way of life than most people want, however, and I don't think it promotes a stable home for raising children in, or depending on each other in the long term. No one who has that much lack of commitment and personal accountability will admit that he did it because he's immature and selfish. So don't expect him to make you feel better about why he did it confessionally...he's maybe just not at a point in his personal development where he wants or can handle monogomy, commitment, staying power, trust, etc. at the marriage level...it's not your fault....but it is your choice, your choice to care or not, to move forward and move on to someone more ready. I don't think illness necessarily disrupts relationships. Don't be afraid to demand what you really want from a relationship (be it trust, commitment, monogomy, or whatever), just because you're ill and you feel low about yourself....it's a feeling, not a reality. If you are looking for someone to raise kids with, grow old with, and depend on, perhaps your church or a similar setting would be a good place to look...? Just an idea...I know everyone is different and finds their partner in their own ways and at the time that comes to them.

Just remembered something (actually, I remembered it a few times and always forgot it again by the time I got in front of my computer...anywho...) The neurologist that thought I was having hyperventilation way back when told me that the dizziness, etc. with that kind of attack comes from CO2 working on the blood vessels, and therefore it's alleviated by breathing into a paper bag (bc it's from lack of CO2 and breathing exhaled air returns higher levels of CO2 to your body). We tried this (I would be semi-conscious, unable to move or speak, so my husband would hold the bag around my mouth and nose) during what later turned out to be POTS episodes....it does not have any positive effect then. Anybody with panic attacks ever tried the paper bag thing? Does it help for that?

Willow, Very sorry to hear that you are in so much pain. I have to admit that I couldn't understand all of your posts...but I wanted to say: I'm really enjoying your British English I'm American myself, but I have a cousin in Britain....he always cracks me up....and my sister-in-law's mother is British....reading your posts, I can almost hear her. In fact, I even imagine that you must look something like her while I'm reading. Just me probably. Hang in there! Masumeh "Inna ma'al-'usri yusraa" (Qur'an) Translation: "Surely with hardship comes ease!"

Sara, I was 20 yrs old when I got sick (had mono, PE, pneumonia sp?, hyperemia) early in my first pregnancy, which miscarried at 8wks. I expected to become "normal" after the miscarriage, and just became worse and worse (although the infections died away, the fainting, dizziness, brain fog, weakness etc. got worse and worse). 6 months later, I decided to get pregnant again because I assumed that I was going to die and wanted to leave behind a child who could do the things I never got to do. Thankfully, that pregnancy set my health on an upward road. I was fainting three times a day when I became pregnant the second time. First trimester, it just stopped. For three months I did not faint. That was really amazing at the time. Although a couple weeks after delivery, I started fainting again (5 times a day due to exhaustion and lack of sleep), I still felt a lot better overall, and I slowly progressed over the following three years to a nearly functional state. I care for myself and my daughter independently, and although I know my episodes upset her (she is only three and brings me pillows for my head--cutie!), I know also that she is the best gift I am giving to the world, and the best gift I've gotten from it too. So I totally encourage you, if your doctors think it's right for your type of POTS etc., to have a child anyways, even though you feel sick now. Or at least, I wouldn't assume that your chances are over, if you wanted children, just because you've developed POTS. And anything else you want to do with your life...it's all just a matter of adjusting your method and time schedule...Like, I wanted to be a nurse....too bad, that really can't happen, but I might give back to medical care more as a patient than as a nurse, if I can help raise awareness about POTS (I plan to revisit every doctor that told me I was crazy!!)...or college, I just do Distance Learning...working...I work from home... The pace is different, and that can be a big blow to busy people...but just remember that more is not always better. Here's the rhyming version... Diagnosis Q&A Question: Laughing?it?s so funny?the pain away. Crazy?what?s my option?the doctors say. Trying?nothing else left?to hope and pray. Dropping?that?s a keyword?both work and play. Speaking?to myself now?words fly away. Holding?small and gorgeous?my baby girl. Falling?will they catch her??scenes spin and whirl. Tired?POTS?day after day. Fainting?all or nearly?my life away. POTS*POTS*POTS*POTS*POTS*POTS*POTS*POTS*POTS*POTS*POTS*POTS*POTS*POTS*POTS Answer: Cool. Slow. Work from home. Salt. Stroll. H2O. Calm. Friends? Family stays. Love. Life. Anyways!

sjprince23, thanks for sharing your experience. It's really true that everyone has their own factors, situations, and ways of coping, solutions, etc. Since even symptoms differ, let alone family and social support, job environment, medical support, etc...this seems to come up often, the differences and everyone having is own concerns and coping techniques. For the injury part, back when my doctors suspected that I had epilepsy, I read about tips to help epileptics avoid injury during a siezure. Although my fainting spells (which can last up to 45 minutes unconscious time and involve some tremors/convulsions) are not technically siezures, I've benefited a lot from the simple advice I read for epileptics. Since your husband has grand-mal siezures, you've probably read it all before...but just in case, one tip that I've benefited from very much is flooring: Always have paded carpeting--everywhere. In my house, all but the bathrooms and kitchen are carpeted. The worst head injury I got was from hitting a concrete floor after falling from a standing position when the carpet had been pulled out due to a washing machine mishap. Also, cooking, being careful to keep pan handles and knives out of knocking range. Personally, since I'm out cold for so long, I mostly cook soups and things that can sit by themselves w/out burning while I'm unable to turn off the stove. Stairs--I get very nervous/scared taking stairs when I'm dizzy and I try my best to avoid that. Would any of that help prevent injuries for you guys? It's nice to take a friend along, and nice that your friends can calm you down. For me, it's just embarassing, even fainting in front of my family, because it's like weakness to me, and everyone gets all upset and worried and cries every time. It's just embarassing to be the cause of it. I guess I imagine that I look stupid too, with my head falling this way and that, my clothes out of place, and my arms twitching, and God knows what else because I can't tell really. Before getting sick, I'd always been athletic and proud of it...I guess this weakness is humbling. It helps a lot now, being able to say it's POTS, instead of saying, "Well, my doctors think I'm subconsciously reacting to past trauma (conversion disorder--yeah, why did it start when I had mono during my honeymoon, instead of 9 months before that when my father was trying to kill me for trying marry out of my "race"? let me not go there.)...but really I'm not, at least I don't think I am...what do you think?" It really helps to have a label, and others suffering with similar symptoms...instead of everybody around me having their own theories (husband=possession; sister-in-law=anorexia; father=stress reaction; mother=life-threatening "something" like a brain tumor; me=curse of God for some sin I cannot even recall). Since I just found out about POTS a month ago or so, I'm hoping it will relieve some of the embarassment. Like I'm not "doing it to myself" by being anorexic (I swear I eat a lot when the IBS is okay...but since all anorexics say the same, I can't prove it to anyone) or by failing to resolve the past in my head or heart. Yeah, that helps a lot. I hope that I can find the right medication too...and perhaps even stop fainting... So thanks everyone...for making me feel normal. Although I wish no one else, no one at all, had to go through these things. Sorry for getting a bit off track.

It's interesting to me how everyone has their own way of dealing with their fainting and spells, their own way of thinking about it and acting around it. I picked up on a few things from what ppl are saying. One important point is that anxiety has physical effects AND physical roots. Anxiety is not something in your mind that produces hyperventilation, increased heartrate, etc. Anxiety is also something in your nerves that produces this reaciton in your organs and consequently your mind attempts to justify the feeling with some kind of cause. This is a well supported theory in physiological psychology. In addition to this physical role of anxiety in our psychology, we POTS sufferers have exaggerated physical responses to stress. So, although not all POTS sufferers experience the symptom of exaggerated anxiety, it is part of the disease and can be treated, like other symptoms, with appropriate medications. Quiet Spike, the "stope the anxiety cycle" is very well put. It is a downward spiral, or cycle, and it can be stopped through interruption, not only stopped through a "cure" or such. Fear of going to public places, or fear of crowds, social fears, go hand in hand with fainting, panic attacks, and siezures. The common thread: feeling extremely embarassed during bad experiences (ie fainting in public or hyperventilating in public) in the past, and fearing that embarassment will recur. Patricia, it seems as though you have been able to avoid developing this phobia due to the fact that you have conquered the embarassment; you don't care what ppl think of the episode. This is great for you. Personally, I have fainted many times in public, and I have gone through different stages with my psychological reaction. I don't like big crowds of strangers and I avoid parties or crowded stores. At one point, I would not go out w/out my husband, and it became like a dependency (when I faint, he picks me up and carries me to the car, tells passing strangers that I'm "just tired" and so forth). It's not just bc of the fainting in public though; it's because the heat of crowds and parties makes me faint. Heat is a big trigger for me. I have a friend with an anxiety disorder (not POTS related). She has GAD, PTSS, and Panic Disorder. She has had panic attacks many times and she knows them very well. All her sisters suffer from the same problem and it seems genetic in origin. She saw one of my POTS episodes, and afterwards (when I was fully conscious), she told me, "Masumeh, this is definately NOT a panic attack. This is neurological." At the time, my neurologist had done a "just in case" EEG, told me that I do not have epilepsy and therefore have conversion or anxiety disorders behind the scenes of my episodes. My episodes are wierd. THey are preceded by a hyper state wherein I cannot stop talking and I ramble on very very fast. I can't concentrate or stop talking (if w/ppl) and my mind skips from one topic to another relentlessly. Then the wall. My episodes start with a sleepy feeling. Then, I become aware of weakness in my muscles and start leaning against things to keep me stable. Then I cannot use my hands (like, can't turn a key or pick up a glass of water). Then I can't speak very fast, or understand anyone easily. I usually respond to everythign with a "What? I don' know." Then I can't pick my legs up, have to drag them along. Sometimes I'll see stars or have sharp pain wrapping around the left side of my head from just above my eye towards the middle over my ear before the wall. In the end, I just black out and fall over. Sometimes everything turns green before or after the fall. This green tint on the world is due to low blood pressure. It's green in one eye, red in the other. I never feel scared...but sometimes I get hyper, or sometimes angry or annoyed with whoever is with me for no particular reason. Even though I don't panic or get nervous or scared during my episodes, I still like to avoid crowds, etc. See, it's not just anxiety or panic disorders that result in this coping mechanism. It's just embarassment that does it. Hope you figure out the best treatment for your symptoms. I think it sounds like anxiety meds would really help.

OCsunshing- If you are thinking that you might have experienced a PE (a blood clot in the lung), which is what I got from the breathing trouble description, I can tell you that they do disolve by themselves, just like any other clot, although a large clot might damage the organ (especially if it's a clot in the brain, ie stroke), leaving its effects for years to come. My PE was small (according to my pulmonologist, it "only" knocked out 15% of my right lung). It disolved as he predicted, over 7-10 days. With this very small clot, I was barely able to speak. Of course, with POTS, we have shortness of breath anyways; but the feeling is very different with the PE. It's not painful unless the clot is bigger. I did not have much pain, just a feeling that although I was breathing normally, I was not really breathing....like the air wasn't getting into my body...(indeed, that is exactly what was happening, but only in the area affected by the clot). Anyways....so glad it's over. And if your breathing problem took less than 7 days to resolve, then it was not a PE. Also, pain and difficulty breathing sounds more like a spasm in your diaphram...my sister-in-law has a small hole in her diaphram and she gets some pain that feels like a heart attack w/some referred pain to her arm and back and difficulty breathing....this is from the hole in the diaphram. It could also be heart burn....? Lots of possibilities...best to ask a doctor I think...especially if it happens again. Melissa- I really feel for you. It's terrifying being on blood thinners for just that reason--the possiblity of internal bleeding unchecked that does not stop. It's wonderful that you noticed and were able to safely stop the thinners in time!

THank you all for sharing!!! The more I learn about how others feel living with this disorder, the less alone I feel with the challenge. I tried to look up the part on how/why concentration lowers heart rate in my biological psyc textbook (that I know I read it in originally) but couldn't. If I find that tidbit, I'll post it here.

Speachless. Hang in there! My wrists are also aching, from finger tips to shoulders...carpal tunnel...but, it's BURNING hot here in Saudi Arabia....("cool" means able to turn off AC). Again, hang in there!

Try to keep your head above water....I mean, don't get tripped up in all the day-to-day ups and downs. God willing, it will get better overall, little by little. I don't believe in "normal" anymore. I don't think it's fair to ourselves to demand that of our bodies, not with this condition. I think it's important to decide what's most important to you, what things make you feel real, alive, and happy, and put them first and find ways (maybe new ways) to achieve those things. For me, I need to be useful. I need to help. My daughter satisfies this for me, because I know even just smiling at her is helpful for her personality development, etc. Also prayer gives me a sense of purpose and self-fulfillment. I am taking social psyc this semester, and recently read about how, at the onset of a "catastrophy" (i.e., what the individual thinks of as tragic for his/her life), the person feels and thinks that he/she cannot cope and imagines that life w/this problem is never going to be enjoyable. However, when questioned about quality of life/satisfaction with life several years down the road, the problem always takes backseat to the person's coping devices, optomism, self-esteem, etc. As the author wisely put it, there's the problem and then there's EVERYTHING else in life. When the problem becomes old news, everything else in life evens it out and more. My point: Feeling better doesn't always mean getting better.

I had a Pulmonary Embolism (PE, clot in the lung) at the beginning of my "crash", when I was bedridden four years ago or so. They did not find any other clots with the dopler. I've seen several hemotologists, and I used to rush to the urgent care any time I had an odd looking bruise w/no memorable cause (bc I was found to have Protien S deficency, one of the anti-clotting agents produced by the liver, there's also Protien C, but I have enough of that, thankfully). But a hemotologist recently told me to calm down about it, that a serious clot in the leg would be unmistakable, painful, swollen, red. I bruise easily and often do not recall the cause of the bruise. But if you remember what hit you, or what you hit, it's definately not a clot. Another tip, clots in the leg often happen around the upper calf (where many women's hoses squeeze their viens). A bruise there, accompanied by pain and swelling, is more suspicious than a bruise, say, on the top of the knee. Hopefully, you do not have a clot. But, for those who do clot, the hemotologists have to put us on blood thinners under several special circumstances, including: pregancy; long travel; surgery; any bedridden illness. But, if you don't have one, you don't want one bc the blood thinners are just annoying (I had to take over 300 shots of Lovenox in my last pregnancy and postpartum).

Christina, I remember how hard it was to start college Distance Learning after getting sick...I don't think I would have done it w/out my husband, mother, and father-in-law (3 of the most wonderful ppl inthe world) encouraging me unconditionally. It's easy to doubt yourself when you know you are starting the race w/a broken leg...but every step taken brings you that much closer to your goal, even if you're walking slower than the others. Definately keep your smile on, encouraging her and reminding her of her inner potential, etc. I know that the supporters of ill family members can get tired too...hang in there! Your belief in her might be the most important medicine she has! For the Distance Learning route for her...I think if she is eager and confident in her study skills, she should start with the community college's distance learning classes (they can admit her w/out a GED--a seldom known secret of homeschooling high schoolers...my friend got her associate's instead of her GED, that's a real time saver). If she prefers to get her GED, she might still find the community college a good starting place bc they usually offer what every freshman needs to start out w/ (i.e., psyc 101, phil 101, eng 101, etc.). Let her take even just one course to start. If she does well, and she should w/just one, it will build her self-confidence and she will feel more motivated to continue and take a couple more classes next semester. It need not be all or nothing, I'm sure you know. Some helpful webpages for searching for the right college: www.findyouronlineschool.com www.directoryofonlineschools.com www.edu-directory.org www.50states.com/college I did a small scale search and figured that she will probably not find a DL for fashion...but she will find many, many options for legal studies. If she gets her GED, she can get her associates, bachelors, and masters in legal studies, criminal justice, and a couple related fields through Kaplan University. I highly recommend signing up for more information and allowing college representatives to call your home. Many of the totally online colleges have private webpages, not accessible w/out a password. The rep will give you a Prospective Student password so that you can view their services first hand. More later Hope this helps some... Masumeh

I know this post was from a long time ago...but I just read it, so thought I'd add my two cents worth... Did you have some kind of caffiene product, like Exedrine or coffee? My husband's systolic spikes after high caffiene intake. The systolic/diastolic should be about 30 points apart. Maybe you were having tachycardia at the time they took the measurement. "Nerves", they might have been referring to "White Coat Syndrome", which happens to some ppl when a doctor or nurse takes their bp; it shows a drastically abnormal (for that person) reading due to nervousness about the setting (hospital), and they are advised to take it at home or in a non-clinic setting. And talking, walking, hand gestures, etc. can increase the bp by about 10 points on each (syst/dia)...not much more than that, even if the person just took the stairs. Has this problem been resolved, since the post was a while back? Hope you are feeling better.

Does anyone else here faint after reading for a long period? In the beginning, when I was bedridden etc., I couldn't read at all...now I can read, but it usually makes me dizzy and often fainty afterwards; it makes for a potsy day I guess. Just wondering if anyone else gets affected by reading. I read that concentration in general lowers heart rate, maybe a contributing factor.

futurehope & Jess... Maybe "too much sleep" for you two is like "down time" for me. I noticed that putting my head lower than my shoulders makes me dizzier upon rising....of course, this makes sense for a number of reasons, but laying in bed for a long period of time, like when I'm sick with the flu, is part of what makes being sick so detrimental to my overall wellness. If I just sick, it's best. Anything that messes with heart rate or bp is bad, bad, bad for me...so bed means lower bp (even for a normal person)...I often faint after reading because concentration lowers heart rate... Any body else here faint after reading? Maybe I should make that a seperate thread.

I hate bananas TOO As for the ?....I went from bedridden to nearly functional over a period of four years. I had a sudden onset, so from what I've read, perhaps that viral beginning was easier to beat than for example an underlying neuro abnormality. It helped most to stop pushing and let my body rest. In the beginning, I was also very depressed because I had to drop out of Nursing School w/GMU, a goal I had been working towards since high school. So, I think the depression (which of course was exasterbated sp? by the loneliness that accompanies being disabled after surrounding oneself with very active ppl) was a big hinderance to my physical recovery. Once I lowered the bar and accepted my limitations as a part of a new me that I had to love for the good parts, I was able to move past the emotional barriers and my recovery started to click along at a very slow and fluctuating, but generally upward, pace. The worst thing is to totally overdo it. That always sets me back. For example, I felt better and better over the past year, but about 4 months ago I stretched myself by taking care of my elderly in-laws while their maid and daughter were having surgeries and illnesses....that killed me for like three months. It feels okay at the time bc of adrenalin, but the aftercrash is horrible and slow to recover from. I've never taken meds. I just take it easy, stay happy, and drink lots of water w/salty foods (and high potasium food, ie potatoes), and limit down time. Down time, which is horrible for me because it lowers bp, is any head position lower than sitting. If I am sick, I should sit, not lay down. Laying down means not getting up w/out fainting. Sitting was impossible at first, but it is how I spend most of my time now. Standing is not good either. If you want to go to college, I highly recommend distance learning. There are many, many colleges that offer distance learning programs, including most community colleges. To mention a few: University of PHeonix, University of Maryland, Mary Baldwin College (my current), Northern VA Community College, and so many more. There's a web page with DL search function, if you are interested I can get the exact addy. For me, commuting back and forth to campus was an impossible energy expenditure. DL works great and I can go at my own pace with MBC. Anways, let me know if you're interested bc I did a long exhaustive search when I first started w/DL and maybe I could help you find the right one for your interests. Masumeh

I can't really say I've "tried" the type you mentioned, but I've had several run-ins with alternative medicine. My father is currently corresponding with a doctor who treats with herbals, but when I spoke to him, I didn't feel he had a clue. He just called me "a car without gas" and admonished me for not eating breakfast. Several years ago, a close friend brought her trusted homeopathic medicine practitioner friend to visit me in hopes of being helpful. She examined me by messaging my head with smelly oils and I vomited. Then she reverted to examining me by my feet, which she claimed corresponded to various parts of the body. She also had a "theory" with no answers. But she recommended minerals as a blanket treatment. At least she was a nice person and much more sympathetic than the other dude. I'm living in Saudi Arabia right now, and my husband's friend here suggested an ancient Arabian treatment which is similar to blood-letting from the back of the neck. It's called "Hijamah". I don't think I'll go there either though. The best alternative medicine I've found is prayer and patience...of course, that one is not for everyone since not everyone finds comfort and solace in religion. But, truly, the doctor merry-go-round, whether alternative or mainstream, just seems to wear my energy down without any benefit.

I was also hyperemic during both my pregnancies. There are two meds I was given, one called phenergan (sp?), which is the cheaper and first line resorted to by HMOs, it also has more side effects and left me in total convulsions; I was allergic. The second was helpful for me, called Zofran, but it's very expensive and HMOs only give it if you twist their arm or need it by reason of allergies to Phenergan. Zofran is great, but a side effect is constipation. I took it through the seventh month, then my OB told me to wean off because it's only suppose to be taken first trimester. Anyway, I had the shots, supposotories (sp?), pills, plus of course IVs for fluids. I was one pound away from TPN, when thank God, I finally managed to start eating. My advice for nauseous pregnant women (unlike any other source of nausea): Eat whatever you want! I think cravings are adaptive, i.e. your body telling you what it needs. Suck lemons! This sounds weird, but it takes that "empty stomach acid" nasty smell out of the mouth. Ginger Ale! Or 7Up, Sprite, whatever. They all work just about the same. But go slow. Don't cook! Cooking smells are totally bad for nausea. Stay away from rice! It gets stuck in your nose. EW. (My OB suggested ginger tea or any other ginger product due to recent research about ginger relieving nasea, but this did not work for me.) Hope this is helpful. Masumeh