masumeh

my two cents: tell her you feel she's unsupportive about your illness, and that you suspect this is because she doesn't fully understand the medical implications of Autonomic Nerve damage. Psychology, epsecially therapy, includes various schools of thought, orientations from which the practitioner or researcher attempts to understand the human experience. Some are socially oriented, some biologically, some cognitively, some behavioral, etc. Your therapist, statistically speaking, is probably eclectic (combo) or psychoanalytic (think Frued). It helps to ask about your therapist's theoretical orientation. It will help you understand her/his analysis of your feelings, thoughts, experiences. You always have to filter, you know...take the good, leave the erroneous or offensive at the door. In any case, the therapist is there to support you....so let her know you don't feel supported in this regard. -masumeh

forgot to add the age bit...age has nothing to do with pure autonomic failure. you could get it at any age from an accident (like car accident) that cuts the nerves. but there are distinctive emotional consequences. The person would not really care about his/her own illness....it's marked by total apathy, which is studied in psychology (my field) in relation to the biological factors in emotional and cognition. well....hope this is helpful to you. but more helpful would be visiting a POTS specialist. you can check the directory through dinet.org.

I think you can put Pure Autonimic Failure out of your mind. It's extremely rare. You would probably be paralized from the neck down. However, Partial Autonomic Failure is what many of us here are suffering from. Some small damage to the Autonomic Nervous System that results in dysregulation of affected internal organs....exact consequences different from case to case. This can include POTS, IBS, gastroparesis, liver dysfunction, breathing problems, cognitive problems, etc. etc. etc. NCS may also be included. Seems like you have some ANS damage, since you suffer multiple organ dysfunction (not just neurocardiogenic syncope). See a doctor who is experienced in POTS; whether a neurologist or cardiologist, POTS specialists deal a lot with dysautonomia (I use the term as it's usually used here in this forum, although the textbook definition of dysautonomia is a genetic disorder in a very special population of Jewish-European decent).

hot baths. very relaxing. muscles wind down that way. also some tolerable physical activity will burn out the adreniline from your blood stream. Good luck, and enjoy your friendship and the wedding masumeh

Hi Nina, It's been a while since I visited the forum. Sorry to see that you have had such a rough ride in the meanwhile! Hope you feel better soon! For the clots, you might consider liver function as a possible reason for these complications. Some blood tests required to confirm. Liver produces the protiens that regulate thickness, clotting time, etc. Surgery provokes clots in people with Protien S or Protien C deficiency. (I have had this since developing POTS). Maybe you should consult a hemotologist.

Sorry you fainted....it can be embarassing, shocking, makes the person feel insecure in a way. But it's great that it doesn't happen frequently in your case. Just wanted to comment on the kids' reaction. My daughter (almost 4 yrs old now) has seen me faint hundreds of times...I faint often and it's been going on since before her birth. She always gets upset. Sometimes it's anger, sometimes sorrow, sometimes fear. I always explain to her, "Mommy doesn't feel any pain. It doesn't hurt. It's just like sleeping." This seems to help. The only thing that totally relieves her onlooker agony is having someone else there to help her. If my sister-in-law (who lives next-door) is there, she takes her and plays with her (not by force, if she wants to stay near mommy, she's allowed). She became very cool headed about the faints after that. She gets upset again when we're alone. Sometimes she lays on me while I'm asleep and cries, or says, "No, mommy I need you. don't sleep mommy." The best thing is when others are there to help her feel like she is still cared for and protected, and when adults in the room don't over react, when everyone treats it like something harmless (which it is). Another short point...I don't think the ER has anything to offer us fainters. They just waste our time and energy. But you should follow up with your doctor and let him/her know about this recent development. Hopefully it's just a fluke. But be careful about your fluids, salts, etc. for the next few days....as you probably know. Maybe the room was crowded and hot? The weather is heating up these days in my area. Don't know about yours....but I've had lots more symptoms since summer hit. Hope you feel better soon!

Hi Danni Welcome to the forum. You'll find many friendly ppl and lots of support here, I'm sure. I know you are probably overwhelmed right now, since you've just been diagnosed. It takes some time to adjust to the label, absorb the information, etc. But I wanted to give you an idea to keep in mind, since you said you had to drop school to rest. I also dropped out of college my junior year due to POTS symptoms. It was really depressing to let go of that dream...but I soon found that I didn't have to let it go after all. There are plenty of distance learning opportunities, some allow you to go at your own pace, take it one class at a time. I strongly advocate distance learning, it gave me some kind of a schedule, long term goal, and a community. Even if you just take one class per semester, you will eventually finish. Not for everyone, but worth considering.

Congradulations!!! Wohoo! Read somewhere that newborns sleep 22 hours a day....great for moms! Have fun with your little one

I've never heard of this before. But if you are getting shorter, this is very alarming indeed, and must have something to do with your spinal column, either curviture or bone loss and compression. It seems like bone loss is probable, since you also have nail problems, and calcium is a common factor between those two issues. See a doctor as soon as you can....and I mean YOU...don't wait for THEM! Press for an immediate appointment if at all possible. Maybe you are having a hormone problem? Let us know when you find out what it is....and good luck!

Welcome to the forum. I'm sure you'll find loads of support here...there are so many helpful, kind and experienced ppl. A small suggestion about the midodrine, it's my med too.... I also had a problem with how the dose runs out before the next. My doctor put me on a lower dose at more frequent intervals, and this works really well. I take it every 3 hours at half my regular dose. (For me, this is 5 mg every three hours, works out to 5 times a day....before this it was 10mg 4 times a day....less more frequently works a lot better for this med, at least in my case, and it sounds like your reaction is similar to mine.) Good luck!

I read somewhere that the vitals they take laying vs standing (my office calls them orthostatics) which includes hr and bp during changes of position are generally considered some kind of telltale sign by which the doctors can guage overall recovery from POTS. I'm doubting that myself, however. My doctor insists that all symptoms--gastric, cardio, muscular, the whole thing--recover together in a gradual fashion. He's a cardiologist and seems to think it starts with cardiovascular weakness and that affects other organ systems....because he always explains recovery symptoms in terms of, "Oh, that is because your __muscle, ears, whatever it is__ have been deprived of adequate blood flow for so long, they are just now waking up!" This implies that if a medication helps alleviate that key symptom of cardiovascular health, it is probably helping all symptoms or will eventually. Sounds like a cardiologists' perspective, to me, though. I wonder whether a neurologist, who sees the disease from another view point, would concur. I doubt it. It is nerve damage in the area of the nervous system that regulates all organs...however, how much of that system, which specific areas, are damaged for each individual probably differs. I had some experience with Liver dysfunction, GI track problems, breathing, heart rate, but my hormones are fine. So it seems to me like liver, GI, lungs and heart are most affected for me. For others, it seems to be kidneys, adrenal glands, and endocrine system included.... But the common factor seems to be heart and lungs....perhaps because those are affected first? There is so much more that the medical community needs to know about POTS and dysautonomia in general. One problem in understanding the disease is that it affects so many systems, and there is not a single doctor who can specialize in all these areas. So, it seems to me, the disease is not understood holistically...just piece by piece from different specialists without many connections between them. Each specialist treats what he/she knows, and believes that is the most important. It would be really good if there were a POTS treatment center that combined a team of specialists in all the relevant areas, who would coordinate with one another and share perspectives and expertise.

"Tip me over and pour me out." this line sometimes runs through my head...I'm very tipsy, get knocked over by a shoulder tap. But if no one touches me, I can manage to stay on my feet.

I have an aunt who sleeps with an oxygen system (wears the mask all night, gentle flow from a tank next to her bed, etc.) because of the results of a sleep study she had; not POTS related. Actually, her husband also sleeps with oxygen....I think they have trouble breathing partly due to the extent of the obesity....but anyhow, maybe it's something that could help you. How do you ever sleep if you can't breathe though?

Uh, did you say heart attack?! I know they can be minor and symptoms might be overlooked. But it seems like you need to demand more consistent medical care and attention. Why don't you allow them to admit you, maybe it will be a good start for thorough care? A ?....you mentioned that they decreased your Atenolol because of this....does that med increase risk of a heart attack? I'm asking because it was recommended to me and I'm now considering it.

The best way I found to cope with things I hate in my body (like the weakness and limitations) is to #1: don't look; and #2: don't think. I guess that sounds like the little kids who close their eyes and tell you that you cannot see them. But sometimes a little blindness is a good thing. Pretend. If you cannot change it, then pretend until you can. Like for me, when it's working well, I feel that my body is not me...it's attached to me and I carry it around and ppl see me through it...but it's not who or what I really am. I guess this is a bit philosophic...but I have to get out of my body to get my mind out of the disease. Think about the things that really make you you...it's not the purple legs or dizzy memory. What do you love? Why do you keep going? These are things that make you you...I believe.

I've heard that honey helps. You can apply it like a face mask, leave it for 10 minutes, wash it off. A Jordanian friend of mine said she had acne until she used a traditional soap from Jordan, made from the Dead Sea salt. She said it's known in their culture to cure acne. Maybe it could be obtained online?

Thanks a bunch! I will try the site. It really helps to know my options. Thanks for sharing your experience, and for taking the trouble to call up the specific info for me

Ooo.. You mean "flatlined" like your vitals dropped ?! That's not a "little" reaction! Hope you feel better fast! Never heard of this procedure before. Learning all the time here on the forum. Ppl try so many different things for their pet-peeve symptom. My sister-in-law gets migraines (not from pots, but she has some wierd unexplained stuff) and she said it's best kept at bay through drinking lots of water. (That for me would mean even more bathroom trips...but maybe it could help a bit for your). Take some rest and feel better

So sorry you're hitting brick walls these days. It's very frustrating to suffer AND not have the proper support around you. No magic wand here....but I really hope you find some peace somehow. Wish I knew a good, dedicated, compassionate neurologist...actually I do know a couple neurologists. One is a friend of a person close to our family...the other is my uncle's step-daughter. What state are you in? It never hurts to have a personal recommendation from someone with a little pull.

Honestly, I'm not sure. It was something my doc threw into the mix. He mentioned that it naturally thins the blood. I guess mine is too thick? It might have been related to my clot (PE) history.

Ok....thanks for clarifying... I think your doctor is wise to insist on the fact that your reaction to postural changes alligns you with POTS, even if you have IST as well. Worththewords (I think it was) had very good advice for you, I think, her story seems directly relevant to your case, since you both seem to have IST and POTS...and the quote you posted mentions that aggressive treatment of IST (ablation) can aggrevate POTS, as it did for her. But, if your doctor isn't your style....I think you could find another that might be along your wave length. Does your IST explain your GI problems? I think it's a pots thing...when the person has various dysautonomia symptoms (like various organ systems effected) alongside the up hr w/posture change.

I did look at the link, and the teeth grinding thing is uncanny. But, at the time when I was having the most severe of these episodes I saw a neurologist. He seemed like a bit of an airhead, honestly, and kept insisting that I was having a conversion disorder post-miscarriage and need to deal with my grief. I told him this started before I even knew I was pregnant...made not a blink in his eye...he just kept referring me to a psychiatrist friend of his. Gosh...that guy was so annoying. But he did run an EEG (which was normal), and told me that epilepsy presenting at my age (late teens early twenties) never presents with daily siezures (rather, it is like a once a year siezure if it starts at that age). I do think it's worth it to see a neurologist anyways though, since that one was flakey, and since I have some other questions about the dysautonomia. Thanks

Sounds like a reaction I got to Florinef....I was so out of it, slept for like 24 hours, and felt disconnected from my body. I do get it every once in a while since then, even though I stopped the Florinef long ago. My POTS specialist told me that the lethargy is part of POTS. Sometimes it's very severe, and I feel that someone must of slipped something into my food, it's so overwhelming and like a fake chemical feeling. But the doc reassured me that it's the disease, not the medication. I still wonder though...it really feels like an artificial, drug-induced kind of mood. Hope you find something that helps!

Well, I really can't follow this one. What's the difference between IST and POTS? Why do you prefer to think of yourself as one instead of the other? And if you know your body and your medical info well enough, then why do you need your doctor's official stamp of approval? I mean, ---and I know this goes way against mainstream med--- but I think that if you know what it is, and you know what you have, then you don't need a diagnosis to verify it. I know that I have carpal tunnel, and I use a wrist brace for long typing projects to prevent a flare up. I never saw a doctor about it, and I don't need to because I studied carpal tunnel and I know that I have the symptoms, and the treatment works for me. I don't need surgery, so why do I need a doctor? Like, if you have training and thorough understanding in cardiology, (which, as you mention you are an instructor, so I'm sure you do)....then why do you need to put faith in your doctor's opinion? You know your body better, and you have a lot more time for your own case than he does. Maybe you want to re-route your treatment plan??

not sure if this comment would help put you at ease or not...seems like in general from many of your posts, you are really struggling to pin down exactly what is happening with your heart...so maybe this would help put you at ease or maybe not. My father-in-law has regular irregular heart beats, and I caught the skip when I first started training as a nursing student. He said it was dealt with long before and determined to be regular irregular...but with his high bp, I take his bp with a stethescope periodically. Last year he had a stroke, and after that his pattern is all over the place, especially in the first few months after the stroke. It skips irregularly, often, for long periods, etc. This is especially true if he fatigues himself. But it got better over the past year. Anyways, with all of that (and by the way, he is about 75 years old), he is still working (he's a scholar in theology and travels around the world giving lectures at conferences and so forth), writing, meeting with people, etc. He's not worried about it, and whenever I tell him to rest or slow down because of his skips increasing, he just laughs at my concern and says, "There must be a price for living this long." And then he ignores all my advice and goes to the next conference in God knows where. How can I hope for him to slow down, he left the hospital after a serious stroke, gave a public lecture to an outdoor gathering of hundreds, then returned to the hospital since he wasn't technically discharged yet (we were all holding our breath that he didn't forget where he was or what he was saying during the address, since he had just come out of a comma). He's a really tough guy. And although I can't relax about health problems the way he does, I do sometimes think of him and it helps. So I think that if we can live with less worry, we will all live longer and happier.