MelissaCrystal

I'd say that's extremely typical with most of us here...that's exactly what POTS is all about---our blood pooling and not being able to resist gravity in our veins. I don't know if you have POTS along with NCS---I don't know much about the latter, but I'm definitely familiar with the trickling blood sensation ;p I hate cold limbs! My only advice for that is wear tight socks and constricting clothing, don't put your arms over your head, work out more, and don't put your body in positions that cut off circulation.

Wow, that would have made me unbearably angry. I would've definitely went off on her. Grr! I probably would've yelled, "Well sorry you can't see my HEART CONDITION that can cause me to pretty much DIE ON THE SPOT if I stand or walk for too long you little," and then I'd use a lot of cuss words. The die on the spot part is a bit of an exaggeration, but maybe not if your blood pressure drops too low. But I wouldn't advise that reaction. I'm just really mad for you right now. I'm sorry that you had to put up with that. Just learn a response that makes you feel good to say and that causes the most regret and embarrassment to the target---that's my advice.

I have no muscle so this is hard for me, but what I do is just RUN to the kitchen or wherever when I need something and hurry back to sitting, and I'm usually able to 'beat' the presyncope symptoms. My heart beats kind of fast for a few minutes but that's better than blacking out or getting nauseous. Or what I do is stay low while rushing wherever I need to go, and the blood doesn't escape my head as easily. Btw I don't recommend any of this to anyone else, just sharing how silly I am so that you guys can get a visual of my daily routines.

Definitely happens to me. Also if I sleep too hot at night---I get up in the morning and the acids just fall out of me. Sorry for the grossness.

Btw, this is really making me think about getting a Pace-maker. Anyone have experience with those? Do you think it'd help me in these kinds of situations? Also, a question for people with EDS----does this sound like EDS, cause I've been suspecting that I have it but no doctors have had reason to test for it yet. I just recently was diagnosed with corneal disease too, which I heard is often linked to EDS. What do you think?

Hey guys, So I'm in the bay area, and it's been getting into the 90s----I'm from Sacramento, and back then I had air conditioning, so when it got to 110 I'd just stay in-doors, but the Bay Area CA doesn't have air conditioning in the houses, so I'm miserable. My BP is 70 over 50 right now (it has been worse, 40 over 20, so I think I can handle this for the time being), my heart is going crazy with tachycardia. I haven't taken my pulse, but it's really fluctuating and jumping around so I don't even know what number it would be steadily. Whenever I talk or breathe, my heart speeds up, and of course whenever I move I black out and get ready to faint. So I'm basically stuck where I am. My chest hurts a LOT, and every pump is a painful squeeze. It's really sore from going on like this for two days straight. I'm sweating unbearably. So I'm only 21, my heart is healthy, but this POTS is really putting my body through a lot. I'm exhausted and I feel like I'm dying. I called all of my doctors today---all of them are either busy all day in surgery/deposition or off for the weekend. I talked to a hospital doctor and he says he wants me in the hospital because my BP is too low and it's CAUSING my tachycardia---because I guess he says your heart pumps faster when your BP is low. Good to know. He also said that my Metoprolol beta blockers are contributing to the low BP, but going off of it would be dangerous to my body too. He wants me to go to the hospital to give me different meds, but I just cannot afford it financially. So do you guys have any tips on getting my BP back up and my HR down in this hot weather? Yesterday I spent the day in cold water and that didn't help. I've been drinking a LOT of Gatorade and water and sweating and peeing it all out almost instantly. Hard to keep up. What else have I tried.... I don't know. I guess that's it. Has anyone else been in this situation? What did your doctor tell you to do? Do you guys know what an electrolyte imbalance feels like? I was curious.

More Gatorade, more rest. Please don't take more meds, that's dangerous---ask your doctor if you really want to, not internet forums =) I hope you feel better soon. I hate being sick, makes POTS soooo much worse. Just try to keep your activity level low, and try taking some Zinc or Echinatia (spelling?) to help you get over the cold faster. Sometimes cough medicine and all that makes me feel worse, so be careful with all that... they also prolong the cold, so I wouldn't recommend it. Advil or pain killers will help you though----especially try to reduce that fever if it ever comes up.

I had my first Tilt Table Test yesterday, and honestly, all I was worried about was that nothing would happen and I'd test negative for POTS/Dysautonomia. I was nervous about that alone---I didn't realize I would have such a painful experience as I did. I've had experience with passing out in the shower, but it was never as painful as being forced to stand for 5 minutes while my brain was being starved of oxygen. My vision and hearing were completely gone and I was screaming and crying because my brain felt like it was being vacuumed out my forehead. Then they took my blood pressure, found it was dangerously low (like 50/25), and put me down immediately. It felt like it took forever. They told me they were surprised my brain didn't lose consciousness sooner and that usually people pass out long before they start feeling that terrible. I felt like I was dying. I'm sure I would have passed out if they had waited like 5 seconds more. I feel like a wuss because I haven't seen an experience as bad as mine on these forums. I've put up with feeling horrible since I was a little girl, but I've never had something this painful happen to me before. My whole body was numb, my head was in excruciating pain, I was pouring sweat from ever pore, and my chest was tight and beating as hard and painfully as possible. I also couldn't breathe which really terrified me along with feeling like I was trapped inside my head with no hearing or vision (it went black then I was seeing snow). Was anyone else's TTT this bad? I mean I'm glad I tested a definite positive, and they recorded crazy BP and HR. It's going to be very helpful for all my doctors, especially the cardiologist who didn't think I had postural hypotension. They kept me an extra hour at the hospital with an IV, because they had trouble getting my BP back up to a safe level. I had to eat and drink tons, and finally they let me go when I was around 80/60. Normally my bp is 112/80. Walking home was terrible, I should've had someone pick me up. I was so nauseous. I couldn't stop crying and shivering because I felt so traumatized and my body didn't feel good. Today I still feel very nauseous and symptomatic, like my breathing and heart rate isn't quite right, but my BP is fine. I hope I never have to do that again =( I'd like to hear that this is normal, because in this case I really DON'T want to be special. Can anyone relate to me? :)

Crap, what can we substitute alcohol with? =(

That is VERY interesting. Thanks for letting me know, I'm going to bring it up to my doctor. I had no clue that hips were supposed to be so stable. I can dislocate my hip whenever I want, of course it's very painful, but it seems like all I have to do is flex a muscle weirdly or step on the ground in a different way and it pops out and does this gross shifting feeling of that muscle snapping to one side and letting the ball loose. So gross and SO painful. I guess now that I explain it, it definitely doesn't sound normal to me now. Funny how when we grow up with stuff like this we think it's normal.

Have any of you considered asking your doctors about this new study? http://www.slate.com/id/2195863/ http://blog.wired.com/wiredscience/2008/07...a-works-fo.html My doctor already knows I'm having issues with my down there parts, my sex drive hasn't changed but I don't enjoy sex anymore (the feeling just isn't there). She says it's a common side effect of the beta blockers I take AND the Paxil--so I get a double whammy. I just recently saw many articles about this new study saying that the regular viagra pill may help women who are like me----have a sex drive mentally but having trouble physically. I'm really excited, but I'm wondering how weird it would be for a 21 year old to ask her doctor for viagra based on a new study. Are doctors allowed to prescribe a female viagra? Is it against some FDA law you think? I wonder if Viagra would be bad for my blood pressure or POTS symptoms.... I'm with my boyfriend of 4 years and I don't know what I'd do if he got fed up with me not being able to enjoy sex. That was the most important part of our sexual relationship to him before the drugs. What do you guys think my doctor would say? What do you think about this new study? Anyone out there having issues they'd like a miracle pill for?

I'm not talking about herpes or anything outside the mouth--- just ulcers of the membrane inside your mouth. Do you guys get canker sores a lot in your mouth? I get like...infestations of these suckers all the time. Usually if I skip ONE day of brushing, or if it's before my period, or if I cut or bite anything in my mouth, it instantly turns into an angry horrible canker sore. I was wondering if this had to do with too much stomach acid, or any kind of immune system weirdness. What would make me so sensitive to getting these? I've done research but can't find why I'm special. Anyone have any ideas or experience with this issue?

Yeah I just dislocate my hips while walking or getting out of chairs. It's the most painful thing in the world, scares the crap out of me whenever it happens, which is way too often. Hard to recover from too. Thanks for the info, I'm going to go to your links and let my doctor know about it. Thanks! ***** that there isn't a cure, but the more knowledge the better.

That's what wikipedia says. I don't know if it's related to dysautonomia directly, but dysautonomia can cause certain issues that perhaps in turn can cause clubbing.

So I'm on a mission to find out what's causing my POTS and a lot of my symptoms fall in the EDS category. I dislocate my hips a LOT and I have floppy, hyperextendible ankles that I roll constantly and injure. My knees are also in bad shape, and I sprain them a lot. My skin is more stretchy that my boyfriend's, and I can impress him with it, BUT it's thick like a normal female's and isn't anything like the pictures I look up in google. It is very soft, but just like a normal female's. I do have hyperpigmentation on my nipple and finger, but that's all. I burn easily so I have to stay out of the sun, and melanoma runs in my family. I'm very pale with light colored eyes, but I don't have blond hair. One skin problem I do have is atrophic scarring, that are thin, and stretches over time. I scar really easily and really badly. I also bruise easily. And my skin breaks at the corner of my mouth (angular chelitis), my nostrils, my earlobes, anus, fingers, and gets irritated on the corners of my eyes VERY easily. I also heal slower than normal. I'm trying to help my doctor with diagnostic testing ideas to get down to the cause of my POTS, but I don't want to bring up EDS and act like a hypochondriac if I'm nothing like an EDS patient. Is it possible to have EDS without the elastic skin element? I've seen that the Hypermobility version (as opposed to the classical) of EDS capitalizes on the joint aspect of the condition, but I don't know if that means that maybe the skin isn't an issue sometimes.

When I first started talking a half a 25mg pill, I got a lot of weird side-effects, but they went away completely after a month and half, and now I feel 'normal' on it, and horrible off it. You might not like the feeling of only taking it once in a while. My doctor said that if after a month I still didn't feel well on it, I should just stop taking it. I wouldn't suggest only taking it here and there because it might make you feel worse (having a pots episode on top of putting up with side-effects). I say take your doctor's prescribed amount for a month and if you don't like it, go off of it. Always taper on and off though (split the pill in half for a week to get used to it, and when you're getting off of it, split it in half for a week to get off so that it isn't a shock for your heart). Btw, my side-effects was extreme fatigue, pressure on my chest and neck arteries (like I was being strangled), and muscle weakness. But they all went away completely, and it was totally worth it.

I'm seeing Dr. Jade Schechter at Metropolitan Medical/Noe Valley Clinic, and she's willing to learn about POTS but she feels like she needs help from other doctors with experience. I'm seeing a Neurologist named Dr. Marilyn Robertson, but she also has never heard of POTS though knows some about Orthostatic Hypotension. I don't have the money to fly to LA for the nearest specialist, but I'm willing to educate and go along with any doctor who has had experience with it before. If you're in the Bay Area, who are you seeing for your disorders? Have you heard of any recommendations?

Yeah I'll ask her if a stress test may help her understand what I'm feeling during activity. That's a good idea, thanks. I think that's the issue here, me not being able to exercise. I think things would get better if I were able to exercise, so a stress test may help her more than a tilt. I definitely wouldn't go off the beta blockers for any reason, I love them. I've been on them for about 8 months now and I'm happy with the ratio of pros and cons. I guess it just doesn't fix everything, and I'd like to figure out how to get to the point where I can get back to work, exercise, and normal day activity. I made an appointment with her for Aug 5th to see what she's comfortable with doing, whether it's a stress test or something else. Thanks!

My lab results were flagged for having low thyroid output, but my doctor doesn't seem to think it's a big deal because my periods are normal. I have mood swings and hot flashes at night though. I'd like to get to bottom of this as well. I have no clue if there's anything up with my adrenal gland.

Okay so my Cardiologist is kind of weird in my opinion, but if you guys have been told this same thing let me know so that I can stop suspecting her of ignorance. My first appointment with her, she said she didn't care about diagnosing me with POTS because there is no cure and a tilt table test is expensive and scary. She said she's going to treat my symptoms ONLY---orthostatic hypotension and tachycardia (based on simple bp and hr monitoring during sitting and standing). Then she said I should go to other specialists to treat the rest of my symptoms (GI, vision, etc). Well, she gave me beta blockers, and told me to increase sodium in my diet. My health is declining because of deconditioning and not being able to walk much (which is my exercise). The beta blockers have made me very weak and have almost no immediate stamina, though I have more energy overall throughout the day. (I used to function in spurts, while now it's pretty much low yet even). Anyway, my point is, this isn't going to cut it. I need some more help from her. I've gone to other specialists (for GI for example) but they keep recommending I go to a cardiologist since they don't know -why- my bowels are acting up and they don't know how to treat dysautonomia. I'm going to a Neurologist right now and she's getting me a brain scan, but it's going pretty slow (she's really busy). I was wondering if I am going to benefit from asking my cardiologist to approve a tilt table test. She said it's my choice if I want to do it, but that she doesn't think anything helpful is going to come out of it. She just thinks I should keep working at getting in shape (I'm losing weight, I'm a thin person, right now I'm very weak and can barely stand for 10 minutes let alone walk for 30). Does she know what she's talking about? Isn't there stuff to gain from doing a tilt table test, like the specifics and uniqueness of my particular case of POTS? What should I do and what should I say to her in order to help her help me?

Metoprolol 25 mg dropped my BP to where I was almost worse than before---BUT it gave me more energy because my heart rate stays lower. It also got rid of my migraines and a bunch of other symptoms. I basically traded symptoms. Right now I'm trying to get my BP up, and I plan on staying on beta blockers. I tried going off of them for a week and I regretted it. Your heart rate is really low though...I don't know about your case---it's a bit different from mine. My HR was 90 normally, then on 25mg of Metoprolol, it stays at 65 (though doesn't help on posture changes, still shoots up).

If you put all your energy into doing the job, then perhaps, but I was wiped out when I got home. I couldn't make dinner or do my college homework. I had to make a choice, and I chose school first. One big problem I had while working was standing for a long time. I had a really sore back and would get majorly dizzy. Also I'd get hungry too often because I'd be burning up my energy. I was allowed to take a lot of water breaks, but the hunger really brought me down. I honestly wouldn't be able to do your job because of the bending and lifting, I'd definitely pass out, but that depends all on how you're feeling. You might want to test yourself during workouts to see if you can handle it all day.

Before beta blockers, my heart rate was constantly in the high 90s while at resting, and I would get worn out fast during the day. Now that I'm on Toprol, I'm comfortable at 65, but when I stand I go up to 120 so it hasn't really fixed me. Just made me more comfortable at my resting heart rate.

I've been looking for a legit work at home telemarketing/or some kind of phone service where I actually get paid by the hour. I've only run into scams. =( If anyone has any suggestions, let me know.

I'm really sensitive to most drugs---and then lots of drugs also don't work at all on me. It's hit and miss----no drug seems to work properly on me and it always confuses my doctor. Anesthetics and sedatives usually don't work on me. I get sick on a lot of pain killers, but I don't think I've ever had an allergic reaction.