masumeh

Hi all! I'm going to a cardiologist tomorrow who doesn't know about POTS. This is because my specialist lives in another country and I need an ECG pronto. I forwarded some excerpts from dinet and vanderbilt websites to a mutual friend of the doctor, who is also a cardiologist and likewise had never heard about POTS. But I was wondering what websites are considered most reliable and informative for a doctor audience? Maybe the medical people in the forum can shed some light or make some recommendations. If there's a better source than the ones I've used, I'll take a print out with me to the doctor tomorrow. Thanks, Masumeh

Obviously the patient is the best judge of what he/she is feeling and experiencing on a phenomological level. But maybe the nurse or whoever else is making you feel invalidated in your complaints means something different than what you are interpreting. I mean, maybe they are not trying to say that you aren't feeling well, but just that there is nothing about the cardiological events that is causing what you are feeling. They could be wrong...you should see another doctor maybe, or have some further investigations done somehow. Could you have a virus, recent sleep problems, stress or other factors that might be antagonizing your overall symptoms and compromising your body's ability to cope with the (according to them) normal range of tachy, arythmias, etc.? I mean, are they saying it's not different from before, so it's maybe some other cause, not visible in the cardiological tests or maybe not directly linked to the arythmia and palpitations? This disease just has so many faces, so many culprits behind the scenes....the heart rate and rythm is suppose to be telltale, but it's not the whole story and I think it often isn't even part of the story during a flare up, or the beginning of one. Well...just some ideas to think from another perspective about the conflict. Doesn't change the symptoms your feeling, I know. I hope you find some relief somehow. Think about it from all angles though. I often find that flare ups are related to sleep for me. But it sounds like you feel that this is more than a normal flare up. Hope you get some answers soon. masumeh

I used to have really overwhelming GI problems, probably the first two years of the disease. I learnt to control it through changing some of my eating habits, but also I think it just got better with overall recovery, like other symptoms. But I still have to be careful about what and how I eat. Some tips: -No raw fruits or vegetables -Fiber is harsh and causes bloating from gas (limit it as needed) -Eat small but frequent meals/snacks (I do half-meals or tidbits through out the day); this prevents bloating due to blood influx in the stomach (healthy for digestion--if only it were properly regulated by the ANS, damaged in us) -Avoid small, hard seeds (like seaseme and poppy, strawberry or fig seeds, kiwi) -Eat smushy foods (potatoes, carrots....more potatoes) -Don't eat on a nervous stomach (I can't do food and parties....too much stimulation to handle sounds and food too in my system) -Don't eat at night (because by that time, your body is fatigued beyond function...or at least mine is...the food won't go anywhere, just ball up inside...dysmotility style) -No spicy foods (but I find that sour and salty helps me) -Use Tums if you get acid and heartburn....take a dry spoon of honey if you have diarrhea....eat some crackers for acid also...like treat symptoms as they come -Sit for a while after meals; give your body a chance to digest before activities or naps This is part of what helped me. I hope it helps others too.

This is paradoxical but true. I've heard others say the same. Personally, this is only the case for me when I'm having brady, rather than tachy. And the brady is much worse. I just have to stay half-way, like reclining. But it's not always so...sometimes it's tachy, and I should go flat. Soooo many different kinds of symptomatic moods w/this illness; it takes years to get to know them all....and then they shift and change. Good luck.

Hi everyone, It's been a long time since I posted or read posts, but finals are over now and I have something on my mind to say here. I just wanted to thank everyone for coming and sharing and helping each other. This forum has helped me cope with the disease in practical terms. It's not just the practical tips though, and the general feeling that I'm not alone. It's how we discuss the emotional factors involved in living with dysautonomia....the process has a strong effect, a positive one. I recently had a major episode in public, which used to really affect me emotionally because I felt so embarassed by it...but thanks to some discussions we had here in dinet, I was really OK with it. I remembered some of the things people said, like how everyone who sees the fainting just wants to help, and it's so nice that people are just genuinely concerned, so why should it be embarassing... It didn't convince me at the time I read it, but it really helped me in the moment when I was coming back to consciousness and looking at about six people staring at me. Usually, this kind of thing would stick with me, and I would avoid going out, avoid people, etc. This time, I just felt normal. Even the next day, it didn't bother me; I didn't even think about it much. I'm just glad that people are so nice. Thanks again. Masumeh

I work from home and study from home. I work as an editor, sometimes also tutor. Neither of these is really the field I studied, but I've heard that even healthy individuals seldom work directly related to their degrees. Good luck finding your professional niche!

Thanks for sharing It's always nice to hear the good news side of people's stories...and it is often the bad news side that brings us here...so, thanks for updating on this wonderful baby girl you brought into the world

Yes, there are circulation problems to the extremities (fingers, toes). this is the same reason why they get cold. I get this a lot..and never really noticed until it stopped when I took medication (the coldness faded simultaneously).

How long have you had the disease/symptoms? I think it is interesting to track out a common development pathway of the psychological phases patients with POTS go through as they enter the world of chronic illness, adjust to diagnosis, and then adjust their lives and self-concepts around this added life challenge. Might not be possible...maybe there's no universal pathway to psychologically absorbing this kind of change...but maybe there is? "Why?" (sometimes taking the form of medial etiology questions rather than spiritual or existential "why"s) seems to be a part of the process. But I think when the mystery of the symptoms and phenomonological side wear out, then "why" matters less and less. I mean, once you know the course of the illness, and learn to cope day to day, it just doesn't matter how you got the disease (as long as you cannot pass it on to others). But about the tachy and bp....I sometimes feel the worst, check my HR watch, and it's like a perfect 70! I used to get really puzzled, but then I realized (it took a year to figure this out) that I was swaying between tachy and brady. The bradychardia (slow HR, like drops below 60 beats per minute) feels MUCH worse than the tachychardia. The strange thing is that tachy will show up easily, but brady will not show up if I am moving. However, if I lay down and stay still (at those times only, not generally or all the time), it will show up (sometimes). For me, it can get as low as the 30's. With many experiences with it, I can tell by how it feels now, and also by the fact that the readings are unstable. Other times when my HR and BP are not very affected, it can be a food allergy reaction. When I started having POTS, I was not aware of having food allergies. But over the years, I realized that I was avoiding certain foods, without much consciousness--and when I was forced to eat them (as in while traveling or when meals are not under my control), I would feel more POTSy, sometimes have full blown episodes around half an hour after the meal. Again, for me, the food allergies cause low hr, rather than tachy. This disease is so very complex....it takes a long time to feel like you know your own body again.

Interesting question/issue. I sometimes notice fluctuations in my mood before an episode. Others sometimes notice things too. Generally, however, difficult to answer this question because I find that I percieve my mood as far more stable than other people do, like my husband, mother or friends. They can tell faster than I can when I'm starting to fade. Sometimes I'm more hyper, sometimes totally flat. Either way it's not me, in the sense that it's not my true reaction to my environment or surrounding events...it's the disease. I think it's related to fatigue sometimes, or nervous irritation that comes with tachy.

My OB/GYN told me that taking 2 Flintstones multivitamins is the same as taking a prenatal vitamin, and easier on the stomach. So, I think there's nothing wrong or inferior about the children's vitimins, as long as you take an adult dose. Why take a nasty tasting pill when you can take one that tastes like candy? Well...I know a lot of people hate the Flintsones too...but I think they're delicious

The later, the worse for me. I get more and more tired through out the day....it's like a cumulative effect. Also, on my TTT, the second minute showed significant deficit in blood to the brain, but it got worse and worse...so like at 20 minutes it was about 75% deficit (only 25% of the adequate blood was reaching my brain). So yeah, I think there is a delayed effect. But adjusting to position changes makes a difference too...if you don't get out of bed the right way (ie slowly in stages). Hope this helps.

YES! Thank you! Avacado is the word

Yeah, tearose, that was a funny anecdote Thank you all for your responses. It helps put things in perspective. I know most people need more support than they receive from family and friends, and I am thankful that my husband takes a helpful attitude. But in any given matter, there are two extremes, and the middle is the best way...at least that's my philosophy. My husband is the extreme of helpfulness, and the unintended effect is destruction of my self-efficacy. I legitimately struggle with feeling half-alive due to the limitations of chrnoic illness....I don't need anyone around me whose behavior further reduces my ability to keep fighting. This forum helped me get my feelings pinned down....articulate the problem to myself. I know he cares, but he's a worrier and his anxiety over my health is NOT helpful to me. It makes ME feel anxious too....bound up with "if"s and "in case"s. Besides making me feel my tiredness more, it's parental, and I don't want to be treated like a child just because I'm sick. I'm still an adult and I need my autonomy. For example, if I feel up to going out, or I don't but I'm just so sick of the house I've got to get some air even if it chokes me, he steps in to "remind" me that I'm too sick to do so....or he'll get around it by various means, just like I might put off my 4 year old about a toy she wants but can't have. Like if I want to invite some friends over, he'll say, "Maybe next weekend, I'm pressed in work this week." Next weekend there will be another excuse...eventually he'll admit that he doesn't want me to cook all day and faint all night. Can't I decide that for myself? I'm 26 years old! He's particularly restrictive about letting me do things alone, or even in a group without him present. I feel that his reactions limit my life more than the illness itself warrants. On the other hand, he's not trying to do so intentionally...it's just his nature to worry, and it affects his own life even more than mine. He even started working from home so that he could be there for our daughter "in case" I faint. But it's demeaning in a way. He's so vigilant and constant in this behavior, it makes me feel like just giving up and resigning myself to his babying for lack of energy to fight over it. But that's not who I want to be....I was never the depedant type, and I need a lot of space in a relationship. I once brought it up with him, when he wanted to carry me and I wanted to walk myself home. I told him to let me walk, and he insisted on at least hovering around me, holding my arms. I shook him off and told him, "I'm not an invalid." He replied, "Yes you are." Even if I am, I can walk....um....sometimes That time, I could. I don't want his help when I don't need it. Am I being a grouch? Maybe I'm making a big deal over nothing...maybe I am an invalid and I just need to face the facts. But I want to feel like an equal in the relationship...and I don't want to be treated as a child. There is already a big age difference between us, also before engagement and marriage, he was my teacher and that's how we met. I sometimes attribute his behavior and parentalism to that...although he says it's not that. He says he's just being a normal husband...but I don't like these chivalrous ideas...I want to be treated as an adult, an equal... Does this make any sense at all? I feel so much better away from him (I'm on vacation in another country, visiting my parents)...I feel less anxious, more free in my thoughts. I feel so much more able to function...even though I'm not really doing more than I usually do at home, I feel like I could if I wanted, like the decision is my own. Also, my family acts normal, accepts my help in little things, and they go out if they like, without worrying about whether I can go or not. It's like a normal life around me, and it makes me feel more normal. I'm not constantly feeling guilty for being ill, because it's really not affecting them....they're not quitting their jobs to stay home because of me....they're not cutting off friends to prevent me from becoming tired at parties.... They're just going on with a normal life, and inviting me to be a part of the fun whenever I feel like it. Sorry for making this incredibly long...but it's heavy on my mind these days. I know the person I really need to tell these things to is my husband himself....but I want to get my thoughts straight first...I know he'll say I'm sick, and his reactions are normal...which may be true...but they are not helpful in reality, because they make me feel insignificant and powerless....or maybe I'm just blaming him for the way the disease itself makes me feel....I don't know.

Welcome! Diet-wise, be careful about allergies. I have many food allergies, and have been finding them slowly. Milk is a common allergin for POTS patients, according to my specialist. For me, it's also egg whites, strawberries, tuna fish, and --forgot the name--pardon my word recall difficulties...the green thing that you make guacamoli out of?...anyway... Also my doctor told me that the IBS related syptoms would be worse when I eat high fiber, which I found to be true (even though most doctors who are not familiar with POTS will recommend high fiber for IBS!)... Of course, stay hydrated (which includes having enough sodium and potassium intake to keep the fluids in your blood). Hope you find the support you need

If you like "Pride and Prejudice", you will really love "Evelina" by Frances Burney...she's Austen's predecessor as 18th Century lady novelist, and her use of absurdity in humor will make you laugh out loud (even though it's the kind of funny that would never work on screen). Hope you can find a copy...it's really a fun novel

This is a total coping topic...and not really medical at all. But I wanted to hear from anyone who might have the same experience as me... My husband is very supportive, ect and has been through out my illness. We don't always have the same feeling about the disease though. I'm traveling w/out him these days, and it's made me realize that he really overprotects me, to a point that makes me feel more like and invalid than I am. I feel so much more empowered by myself...I'm just wondering if we (my husband and I) fell into some kind of relationship trap because of my illness...like the balance in our home started to bend around my inabilities instead of both our strengths. Does anyone else experience this in their relationships (husbands, parents, whoever)? What role does illness play in your relationships with family members? Is it clear or easy to analyze? thanks...

Late thought on this post.... I was once told that muscle spasms involve potassium deficiency. That can come w/some med's used for POTS (like florinef). Did you ever check your K levels?

I gotta reply to these hot bath comments.... If you are a fainter, or even if you're not but you could faint, you really shouldn't risk the hot bath thing if you're alone in the house (or your husband isn't around to check on you during the bath). We're fortunate with POTS in that there aren't many ways to die from it...just takes away from functioning, etc....but it's not a lethal or fatal kind of disease. However, there are ways that it takes people's lives...if you faint at the wheel while driving, or if you faint in a pool or bath. Last week I visited my POTS specialist, and I happened to walk into the empty waiting room while two nurses were discussing another patient's case. She just passed away because she had POTS and fainted and drown in her bath. My doctor recommends a warm bath to relax muscles at the end of the day, to help me fall asleep....but I think these baths need to be watched by a competent helper.....at least for those of us who faint frequently. That "calming" effect is sometimes difficult to distinguish from lethargia that precedes a faint.

Me too....it gives me a headache kind of feeling, makes me irritable, and generally more symptomatic. It especially bothers me if in contrast to darkness, or on bad days. So night car rides are heck because it's a lot of passing flashes of lights from other cars, street lights, etc. The mechanism explained to me is that the tachy makes the body produce extra adenaline, which primes the nerves and makes them more sensitive (to light, sound, touch, etc). It's definately a POTS thing....I sometimes feel so much overstimulation, I just have to take some time out to hand upside down (blood to head) in a dark, quiet room. Bat-style

I get the "out of body" dizziness only in reaction to strawberries...I get a little foggy with milk....but strawberries makes me feel almost schitzo, swimming room, etc. Did you possible eat something you're allergic to? Especially since it struck all of a sudden.... Something to think about...

Adrenaline is a big problem. My doc suggested a tredmill 10 minutes to burn out the adrenalin from the blood stream. It's really strange that 88 bothers you. Maybe it is up and down and you catch an 88 type moment...is it a stable reading? Try taking it a few times to make sure. Sometimes when I feel racing heart rate, the first reading shows something normal, next (1 minute later) shows 190, next 60, next 80, next 150, etc. Good luck!

I said "other" because I had my daughter after onset, before diagnosis. Her pregnancy actually bolstered my recovery....I was totally downhill before, and I didn't know what was wrong with me (didn't know about POTS, nor did any of the -like- about forty doctors and specialists I saw). I was bedridden, getting worse exponentially over about a 6 month period...then I just decided that I didn't want to die without having a child, and got pregnant. I was hyperemic, but that was better than the constant braindead and in bed state I was at before the blood volume increase, hormone changes, etc. helped rid me (temporarily) of dizziness and fainting those first few months. Well...now that I am highly functional and fainting only rarely (four years and a thousand faints later, mind you), I really don't want to do it again (the hyperemia, I mean). Thanks for the interesting topic!

I find the religious life in this forum interesting...and wonderful too. My cousin is a Lutheran pastor, and my husband is a Khateeb (Muslim term for a person who delivers Friday Congregational Prayer sermons). I'm a Muslim too. Well...I also suffered hyperemia in both pregnancies (first one miscarried), and some of the common complications too. With my daughter's pregnancy, I was underweight before pregnancy and continued to lose about 15% of my body weight in the first trimester. But she and I both turned out fine in the end. No more pregancies in my near future though, I hope! I love children and I love being a mother....but the nausea and vomitting I can do without! I really wonder about people who are hyperemic in pregnancy and have more than one child....like, if you know what's coming, how can you submit to it? People (family members, mostly mother-in-law) try to convince me that a third pregnancy could be different entirely....but I doubt this, since I'm nauseous all the time even when not pregnant....and during pregnancy is too late to change one's mind in case the hyperemia recurrs....and....well...then I've deprived my daughter of a mother for about a year because I'll be completely incapacitated.... How did you cope with your second pregnancy and small child simultaneously??

Hi all! I haven't visited the forum much recently. In fact, I've been feeling really good health-wise, and functioning much better since I got off Midodrine in May. I usually use this forum to unwind or work out mental frustrations, etc. So I guess it's good to be less dependent...but I do miss hearing from everyone and feeling connected. Anyway, tonight I had an episode due to an allergic reaction. The difference between this and my regular POTS fainting is that it starts with a stomach ache, head ache and a dizziness that differs qualitatively from my normal POTS dizziness. Then my breathing just seems to almost shut down completely, worse than in regular POTS shortness of breath. It's similar also, because it involves bradycardia that knocks me unconscious for a couple hours. I get all the post-episodic syptoms of weariness, mental disorientation, etc. too. But I only get these kinds of reactions to strawberries (although I'm also allergic to eggs and milk, I only get brain fog, muscle cramps, and sweats with those allergies). Is anyone else here allergic to strawberries? If so, how does your reaction take form? Also, I'm thinking that staying home is best during these episodes, due to the fact that ER people always seem so clueless about POTS. I tend to shrug it all off, because I'm happy that I'm better than I used to be....but my mother was present at tonight's --whatever, episode thing-- and her anxiety made me second guess my comfort with such events. Should I be worried? I feel fine about it, except that I know allergies can be dangerous in normal people....but I thought that it's just another POTS thing for me, which never seems to kill, just annoy. Thoughts???